Newsletter – Page 8 – Polio Survivors Network

Linc Pin Volume 6 Issue 3

The Lincolnshire Post-Polio Information Newsletter Volume 6 – Issue 3 — November 2007

WebSite – http://www.lincolnshirepostpolio.org.uk

This publication is provided as a service to those seeking such information. The opinions expressed in this publication are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

POLIO SURVIVORS KAY and LINDA Mum and Daughter Pages 16/17

JAZZ UP

YOUR

CANES

PAGES 18/19

CONTENTS

3. Editorial 4. Message from Your Chair

7. British Polio Fellowship Expert Panel Report

8. Report on British Polio AGM and SW Regional Forum

10. Help, Help, help… Article from Jean Murdoch on Care Assessments, Direct Provision, Direct Payments and more

16. Polio Survivors, Kay and Linda, Mother and Daughter.

17. A few funnies. 18. Decorated Canes.

20. Non Paralytic Polio—Ernest W Johnson MD, Editor, American Journal of Physical Medicine and Rehabilitation

DONATIONS

We would like to thank the following for their generous donations.

John Hartmann, Frank Knights, Frances Turnball, Joanne Curtis, Yvonne Grosse, Lynn Hobday, Winifred Hyam, Margaret Lamb, Heather Chadwick, Viv Holland, Stuart Barnett, Jean Simm, Jim & Jenny Rayner, Sylvia Fortune, Post-Polio UK, Bridget Langdon, Ann Stone, Christine Darlington, Elizabeth Tilbury, Margaret Edmonds, Janet Corr, Dianah King, Mrs KF Preece, JD Witheridge, Mrs JE Shaw, Yvonne Webb, Pat Galvin, John De’Ath, PAB Peacey, Angela Johnson, Ivor Hills, John Doohan, Norman Jones, Sandy Yarrow, JM Deans, Lincoln Motorcise, Agnes Walker, Steve Clynch, Pamela Minnit, Cynthia Evans, Mrs AM Carmichael, Kathleen Burrell, Hilary Davies, J&VA Scrivener, Vin Murria, Steve Clynch, Pamela Minnitt, Cynthia Evans, Anne Carmichael, Kathleen Burrell, Hilary Davies, Agnes Walker and donated expenses from the Trustees and Operations Team. USA – Robert Price and Virginia Ottonello.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, *** NEW ADDRESS *** P.O. Box 954, Lincoln, Lincolnshire, LN5 5ER, U.K.

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Post to Membership Sec, UK, 13 Derville Road, Greatstone, New Romney, Kent, TN28 8SX UK Membership – Life Member (LM) £150 or £5 x 30 months S.O. – Member £12.50 a year. All UK Memberships payable by Standing Order – Forms from Membership Secretary. Overseas Newsletters by Airmail.

European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – February 2008

Articles for publication 4th January by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee [Trustees]

Chair & Email List Facilitator – Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk Secretary– Hilary Boone – hilary.boone@lincolshirepostpolio.org.uk

Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Committee Members – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk Ruth Bridgens – ruth.bridgens@lincolnshirepostpolio.org.uk

BPF Expert Panel Member – Mary Kinane Operations Team

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk Phone Team – Di Brennand (Leader), Margaret Edmonds, Judy Barter Administrative Support – Sheila Dunnett, Pauline Butler, Barry & Olivia Branston

Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Copyright of material published in the LincPIN is retained by The Lincolnshire Post-Polio Network and/or the original author(s). Reproduction and redistribution of any material via any media requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s). Where permission is given, original material must include a credit to the LincPIN; material from other sources should credit the original publication.

Editorial by Hilary Boone.

We pay for our PO Box mail to be redirected so that no-one has to go and collect it. When one member reported that she had not received a response to a letter we checked with Royal Mail to find that on some occasions mail had been put in our Box instead of being redirected and it was still there! So we know we have been having some problems with our Post, but are there more we don’t know about or are nearly all of you experiencing Polio Brain Fog! Do you too need to have regular serious talks with the Filing Clerks in your brains about their filing and retrieval methods. I am sure you will agree with me that it is not really fair to us that our ‘Filing Clerks’ put items in the wrong file or file things away in storage before completed. I have had to resort to adding a white board to my office so that I can list the important ‘to do’ items and check this person has done their job properly before I rub it off.

If you would like to join others rebutting the ‘Survivors of childhood polio do well decades later as they age’ [a] ‘Polio Survivors faring well’ [b] and ‘No polio effects’ in later life’ [c] Media headlines I reported last year in an article titled ’Polio Survivors throw doubt on Study’ [The 15 year Mayo Clinic Study] then we need a photocopy of your completed Self Assessment Questionnaire to send to Dr. Walter Bradley who along with other delegates at the April Miami PPS Conference, Dr. Walter Bradley felt it was important to publish a paper that presents the histories of a group of patients with post polio syndrome as a counterbalance to the papers from the Mayo Clinic and has agreed to take on this task. This is not a scientific survey but will place in the medical literature examples of our experiences. Your copy will be made anonymous before posting to Dr. Bradley.

Our sincere condolences go to our Phone Team Leader, Di Brennand and her family. Her husband, Stuart died peacefully in his sleep on the 28th July 2007 with Di and their girls at his bedside. Our thanks to Judy and Margaret for standing in for her when needed. Remember if you are not on the Internet and need some help with PPS issues give these gals a call. They do a very important job and are only too pleased to help others as they were helped when they first rang. Two newsletters ago I published an article ‘Pacing our emotional stress’ by Sandra Cuadra, a PPSer in Florida who came to our Wedding. In this she stated that she found the stress of attending funerals is to high a price to pay and that she prefers to remember the dead as they were in life. Sadly I have to tell you she passed away on September 15th.

You will notice that I am no longer justifying the paragraphs in Newsetters. I liked them to look neat and tidy but on reading the guidelines from the Blind Society learned that it is easier for partially sighted people to read like this. If you still find this difficult to read then do let me know and I will make a special larger print copy for you.

MESSAGE FROM YOUR CHAIR Mary McCreadie

The AGM in September saw a goodly number of members attending, which was very gratifying. For a group such as ours, it is often particularly difficult for members to attend, whether because of health problems, or simply a matter of distance. Our membership is remarkably spread out across the country (and indeed, the World!) and we were delighted that so many people turned up – some of whom had travelled several hundreds of miles to be with us. The minutes of the AGM will be found attached with this newsletter, but it is important for me to say here that from the nominations received, the following Trustees were nominated, proposed and voted in:

Mary McCreadie	Chair
Hilary Boone	Secretary and Founder
Denise Carlyle	Treasurer
Mary Kinane	Committee member & BPF Expert Panel Member
Ruth Bridgens	Committee member

I’d like to take this opportunity to thank Di Newman for her time as a committee member, and wish her well in her future activities with Cambridgeshire ME Group and Neurological Alliance.

New Trustee – We are delighted to welcome Ruth Bridgens to our committee. Ruth has been a member since 1998, and you may remember her article on post- polio syndrome entitled “We aren’t dead yet” was featured on the front page of our June 2005 LincPIN. Ruth has very kindly written the following paragraph to introduce herself to you all:

“After having troubles getting a PPS diagnosis in the 1990s, I saw an ad for a new Open University MSc in Science on understanding controversies in medical research, which sounded like it might be interesting and helpful. Many years previously, I had received a BA in art history and biology from the US, and an art degree in the UK. During the MSc, I carried out a small questionnaire on PPS symptoms, and discovered that most of the participants identified with a symptom, muscle fatigue, which was hardly ever included in medical PPS surveys. From the MSc, I moved on to an ESRC-funded PhD in medical sociology at Cardiff University (2001-5), “Narratives of polio and post-polio syndrome” which combined a larger PPS survey with 31 interviews about people’s experiences of living with polio and PPS. Besides people’s experiences, I tried to understand the medical attitude to PPS and how the research has tended to look at polio and PPS in a somewhat narrow way, excluding some experiences and symptoms. While writing the PhD, I had a commentary to an article on PPS published in the BMJ (2005) (which I instigated) widening the view of PPS to include people who recovered well and did not necessarily have obvious physical after-effects. Recently I had a letter published in the Journal of the Peripheral Nervous System (2007) about flaws in the reporting of the recent Mayo clinic follow-up study. I have given papers at numerous sociology conferences and have had several articles published.”

Thank you, Ruth! I am sure that Ruth’s experience and expertise will be a great help to us all.

The AGM proved to be quite an experience. It was my first AGM in any official capacity – and as such, did cause a few butterflies to run riot around my insides! Once the business of the AGM was concluded, we were delighted to welcome our first speaker of the day, member Jean Murdoch. Jean is a great lady who has been researching the vagaries of Direct Payments for Care Packages because of her own problems. Her talk was most entertaining and extremely interesting. It is clear that there are a number of differences in how Local Authorities view their responsibilities. Although Jean’s work relates mostly to Lincolnshire, she was able to give plenty of information on finding out what your entitlements are under the law, and how to approach your local authority. All the details can be found on pages 10 to 15 of this newsletter. After her talk, Jean answered various questions from the audience, until it was time for lunch. The food, which was purchased by Hilary Boone, was well up to the usual excellent standard, and I would like to say a huge ‘Thank You!’ to her as well as to Sheila Dunnett and Francis Turnbull, who did a wonderful job of setting out the buffet, and making sure everyone had plenty to eat. Thank you too, for organising and distributing tea and coffee, and for so cheerfully tackling the mammoth tidy-up when the meal was over. You made light of the work you did, and we are very grateful to you!

You will remember that we had arranged for various health professionals to hold workshops in the afternoon, so that members could discuss the problems they had had in getting their PPS properly assessed; obtaining the correct advice or aids etc. We were really looking forward to the workshops, feeling that a lot would be learnt on both sides, but regrettably, each and every one of the health professionals who had agreed to come, dropped out at the very last minute, leaving us with no opportunity to replace them. But what appeared initially to be something of a disaster turned into a very informative and interesting afternoon discussion amongst members and Trustees, covering a wide range of topics, and allowing a freedom of expression that might otherwise have been a little difficult! We heard several stories of members still being told that PPS ‘doesn’t exist’ and having less than helpful appointments with NHS professionals. Wouldn’t it be nice if we could wave a magic wand, and find that the situation changed overnight? All we can do is keep on spreading the word – keep passing information to our doctors, nurses and physiotherapists, until the message begins to sink in. LincsPPN has continuously campaigned for diagnostic tests such as manual muscle testing, lung function, sleep-testing etc., to be reviewed. We know that the tests are basic, and often insufficient to pick up the subtleties of declining function in PPS. Getting the medical profession to accept the truth of what we say and actually do something about it, is an uphill struggle. But we will prevail!

Responding to requests for information

Last newsletter we sent you out a slip to fill in with your current details. Due to a series of problems beyond our control, the newsletter was sent out very late, and you may have thought we didn’t need the information any more. But we

DO need to hear from you – even if none of your details have changed. So far we have received some 20 forms back, and we really need to hear from the rest of you so that we can get our membership list bang up to date. So please – get those forms back to us! If you no longer have the form, please would you drop a note of your full name, address, telephone number and e-mail address to P.O. Box 954, Lincoln, Lincolnshire, LN5 5ER, U.K., or send it in an email to the address at the bottom of this page. Thanks in advance for your help in this. During the winter months, we shall be attempting to sort out this problem by telephoning everyone on our Membership list, but if in the meantime you would assist by remembering to fill in the form, you would be doing us a great service. We look forward to another year of hard work, in our efforts to bring information about the diagnosis and management of PPS to our members, Health Professionals, and of course, to the general public.

You can’t always judge a book by its cover!

I was rolling back to my car today, with my wheelchair festooned with carrier bags full of shopping, when I saw a group of fairly scruffy youths skateboarding in the car park – a bit too close to my car for peace of mind. I don’t know if like me, you feel a touch wary of lads like these, but I found myself mentally gearing up to combat any trouble. But just as I got to the car, three of them zoomed up on their skateboards, smiled broadly and in very refined tones asked if they could help me in any way!

With considerable relief, I smiled back and said no thanks, but how nice it was of them to ask. They hung about and chatted whilst they watched me use the hoist to get the wheelchair back in the car, and as I pulled out of the car park demonstrated some pretty nifty moves on their boards. Thanks lads, you made my day!

Learning to accept help gracefully is probably one of the most difficult things to accomplish. We don’t always need it – as demonstrated above – but sometimes we do, and are maybe a bit too proud to admit it. It’s taken me a number of years to realise that there’s really no percentage in trying to do everything myself all the time. There are occasions when a little bit of assistance is worth its weight in gold as far as pain, anxiety and energy levels are concerned! I got into a situation the other day when I found that (after I’d filled up with diesel) I hadn’t noticed that there was an enormous step into the garage shop. I didn’t have any cash with me and was going to pay by card. But there was absolutely no way I could get into the place. Not knowing quite what to do, I saw a chap coming towards me. ‘Problem?’ he asked. I explained – and with no more ado, he put a beefy arm right around me, and lifted me bodily right up the step! He waited for me to finish paying, and helped me back out again. He couldn’t have been kinder – and when I thanked him, he said it gave him ‘a real kick’ to be able to help. It seems to me that accepting help can actually be a two-way street, and maybe we do as much for the helper as they do for us.

Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk

British Polio Fellowship – Expert Panel

In January, The BPF’s Expert Panel met for the second time and fine-tuned the key issues needing to be addressed, with detailed discussion papers on a number of issues; Terms of Reference were presented by the BPF so that the Panel would be clear about its remit. It did not take long for the Panel to acknowledge that there is an identifiable and real need amongst polio survivors in the UK to access medical treatment and services for those with long-term conditions which are not currently available to them.

By May 2007, it was agreed that a clear working definition of PPS needed to be agreed before other crucial issues could begin to be addressed with any effectiveness. Some robust discussions have taken place about the nature of PPS, and the panel has, by September 2007, finally agreed its top level definition. This was not an easy process, with varying views being expressed about how we could define the kinds of problems which are all too familiar to our members, i.e. fatigue, including muscle fatigue. I believe that the Panel is in no doubt that it has a clear objective to make recommendations which can improve the lives of those living with PPS in the UK, through improved services, and in order for this to happen three sub-groups were formed early on with the added benefit than anyone on the panel could join in on the discussions of any of the sub-groups. These sub-groups cover the following broad areas: PPS-Definition, Campaigns and Research.

As mentioned above, the panel has now agreed on a top-level, working definition of PPS, which will be recommended for use in a number of settings relating to the dissemination of information about PPS nationally. The next step (currently being taken) is the development of a more narrative piece which supports this top-level definition and which it would be useful for GPs to be able to access when patients come to them initially for help with PPS symptoms, as well as for other clinicians to have ready access to. It is already agreed that while having specialist centres with improved diagnostic services is a good thing, it is necessary at the same time for GPs and specialists within particular NHS trusts to be equipped with better responses for patients, and for a patient pathway to reflect this. Dr Steve Sturman, Consultant in Neurology & Rehabilitation Medicine at Birmingham City Hospital, is an effective champion on PPS issues and will be feeding back to the panel over the next few months on diagnostic issues, along with Dr Ruth Bridgens, PhD, who has had a crucial role on the Panel from its inception.

To date there have been four key meetings held in London, face to face, with much discussion and work also taking place behind the scenes, both via key staff at the BPF’s central office, and via a new e-mail list which was set up for panel members to exchange information and views. It was at an early stage that it was decided to refer the crucial area of Orthotics back to the BPF for consideration for action as a separate and important project. It has already been noted that the areas of orthotics and equipment (such as wheelchairs) do not necessarily need to be lumped together, although one of the sub-groups – that of Campaign Issues – could indeed include the issues of adaptations and equipment in any recommendations it eventually makes.

Mary Kinane, B.A. (Hons)

Trustee, Lincolnshire Post Polio Network,

Member of BPF Expert Panel September 2007

Report on British Polio AGM and SW Regional Forum

At our AGM, member Lynn Hobday suggested that it might be a nice idea to include a few paragraphs in our newsletter about what the British Polio Fellowship is doing these days. As many of us are also members of the BPF, we are happy to oblige. The BPF held their AGM the week after ours, at the Sheraton Hotel near Heathrow. LincsPPN members – Pat Galvin, Paul Stanton and I – attended. Apparently, I was sitting right behind Pat, and we even had some conversation – but neither of us realised who the other was until a couple of weeks later!

In the morning, instructional sessions were held for those in official positions in their branches. A very nicely presented lunchtime buffet followed, and the AGM began at 2.00p.m. It was fairly volatile initially, as Jackie Ball unveiled their new logo. This has been changed to the words ‘british polio’ in rather pale shades of green and blue, beside a picture of three circles. It was felt that the word ‘fellowship’ was not generally understood by the public, and was a bit old fashioned. However, many members objected to ‘Fellowship’ being left out, as well as the use of lower case lettering for ‘british polio’. It was made clear that the BPF will include the word ‘fellowship’ everywhere else in their literature except on the front pages. It was considered that lower case lettering was more modern and eye-catching.

After Sir Bryan Askew’s opening speech, Treasurer Aidan Smith gave his financial report followed by a talk from Leo Redpath about the introduction of a new internet site where members can talk via chat forums, and have access to information on benefits and PPS as well as take part in surveys. Leo Redpath gave a very constructive presentation about how the idea would work, and you can find out all about it at www.forum.britishpolio.org.uk

The members were then asked to vote on changing the BPF’s Memorandum and Articles (which was accepted), but another vote to change the structure of the Trustee Board did not succeed.

Next year’s AGM will be moved up country to Blackpool, and will be held on 20 September.

South West Regional Forum

On 7 October, the BPF held its South Western Regional Forum at BAWA, in Bristol. The meeting was fairly informal, and offered a great chance to socialise. LincsPPN and BPF members Dinah Foweraker, Ruth Bridgens, Paul Stanton and I attended and it was great to catch up with all the news. After a welcome from Regional Chair Pam Jones, a talk about PPS was given by Dr. Steve Sturman, who also sits on the BPF Expert Panel. I agreed whole heartedly with much of what Dr. Sturman had to say about the diagnosis and management of PPS – which incidentally, reflects everything LincsPPN has been saying for years! – but what disturbed me was his assumption that the rest of the medical profession think the same way. As so many of us know, the current level of understanding makes assessment, correct diagnosis, and treatment of any kind very difficult to achieve. It’s all very well telling people to ‘get themselves properly assessed’, but where and by whom?

Dr. Sturman went on to say that it’s a good idea to spend the winter months in a warm climate. This is a nice one to dream about – but practical? For the majority of us, I think not!

His closing words I found most interesting: ‘Evidence shows that people with PPS get more out of their muscles and joints than would have been expected. They seem to remain independent in the long term to a degree that is contrary to expectations.’

Could it be that we are so used to being determined to do what we need to do, to manage when there’s been no help from health professionals or the Welfare State, and to help ourselves regardless of the difficulties that it extends to our recalcitrant muscles and joints as well? I wonder….

If anyone has any local BPF information that they would like added to these pages please let us know by the date advertised on page 2.

Lord, grant me the serenity to accept

The things I cannot change, The courage to change The things I can,

And the wisdom to hide The bodies of Doctors I shot When they said,

“You’re perfectly healthy, It’s All In Your Head.”

Three old guys are out walking. First one says, “Windy, isn’t it?”

Second one says, “No, it’s Thursday!” Third one says, “So am I. Let’s go get a beer.”

Now that I’m older (but refuse to grow up). Here’s what I’ve discovered:

1. I started out with nothing and I’ve still got most of it

2. My wild oats have turned into prunes and All-Bran

3. I finally got my head together; now my body is falling apart.

4. All reports are now in; life is officially unfair.

5. If all is not lost, where is it?

6. It is easier to get older than to get wiser

7. It’s hard to make a come-back when

you haven’t been anywhere.

8. The only time the world beats a path to your door is

When you’re in the bathroom.

9. If God wanted me to touch my toes,

He would have put them on my knees.

10. When I’m finally holding all the cards,

why does everyone decide to play chess?

11. It’s not hard to meet expenses….they’re everywhere.

12. The only difference between a rut and a grave is the depth.

13. These days I spend a lot of time thinking about the hereafter

…I go somewhere to get something and then wonder what

I’m here after.

Over recent years the Government has found that it is very costly to provide residential care for people who can no longer manage to look after themselves at home, and those who have chronic disability and the elderly place an increasing financial strain on the NHS.

Government has decided that it is much more cost effective to provide appropriate support for people in their own homes and, of course, people prefer it. How much better to use public funds to prevent or slow physical deterioration than having to use precious funds to treat the consequences with the NHS.

The Department of Health sets out the guidelines for both health care, provided by the NHS, and social care, mainly provided through councils by social services. Funding for social care is shared between the Department of Health and Council Tax.

If you use the N.H.S.’s help, the Department of Health would rather you used Social Care to reduce your need for help from the NHS. If I had not asked for and received Direct Payments eight years ago I would have tried to struggle on and failed, be considerable more disabled now, need much greater NHS support and have no quality of life.

What is the support provided by Social Care?

Currently there are two forms of support provided through SOCIAL SERVICES.

1. Direct Provision – where the Council will arrange basic care such as help to get

up, washed dressed, fed and put to bed.

2. Direct Payments – where the Council send you the money every month and you

employ people to meet your care needs. The money has to be accounted for.

3. A third – Individual Budget – is a scheme being piloted at the moment by 13

councils and is likely to become available to all next year.

http://individualbudgets.csip.org.uk/index.jsp [CSIP – See bottom page 13]

How to get Social Care Support?

You will need to have a Social Services assessment. This is not a medical assessment; it is an assessment of your need for support to live independently. It is essential to prepare for the assessment. It is not likely that the Social Worker will offer you everything you may need. If you are prepared by reading up beforehand the policies and guidance available from the Department of Health together with your own council’s policies (available on their websites), you will then know the sort of support to which you are entitled.

Each council has its own form of assessment but it should follow the basic principles as laid down in Fair Access to Care Services.

Preparation

You will be asked for your diagnosis and symptoms; prepare a list of your symptoms so nothing gets forgotten, also a list of your medication. The Social Worker will probably have very little medical knowledge. If you see a consultant,

speech and language therapist, orthotist, physiotherapist or any clinician, either on the NHS or privately ask them to write you a short note stating the symptoms they treat and support you need. Your GP may be willing to do the same. The social worker will automatically accept what clinicians say, but may not accept what you say.

The Social Worker will probably visit you at home and may go into every room of the house to evaluate how you are coping and if you need a visit from the Occupational Therapist who will assess equipment you may need.

Do not get too excited – they do not supply much, but you may be entitled to a Disabled Facilities Grant for alteration to your property for access and use of kitchen and bathroom.

If your house is usually untidy because you cannot manage to keep it tidy, do not tidy it or get someone in to do this. This is not your mother-in-law visiting so you want your home looking as it normally does, it is someone who will decide the level of support you need. If you say you have great difficulty in washing up this is not confirmed if your kitchen is spotless. If you say you have great difficulty in making the bed this is not confirmed if it is a neat as a pin.

This is an assessment of you. If you have support from a partner or family, social services will want to know. Discuss with your family or partner beforehand what support they really want to give and what support could be provided by people you employ. If family is willing to support you, why should Social Services?

Family who are carers have often told me that over the years their relationship with the person they care for, their husband, wife, mother or father has gradually disappeared and changed into carer and cared for. Keep your relationship with your family and partner as just that – do not allow them to turn into full time – long term carers.

After you have read Fair Access to Care Services you will realise that risk to independence is at the heart of the assessment, Risks to autonomy, health and safety, ability to manage daily routines and involvement in family and wider community life.

Prepare a list of all the everyday living tasks you cannot do easily. Do not forget to add tasks that someone else is now doing for you. Most councils will not provide support for cleaning, but on health grounds they are required to ensure hygiene can be maintained in say the kitchen and the bathroom.

The most important thing is you have to be really honest with yourself. Can you make your bed? If you answer “Yes with difficulty” that answer equals no support. If making your bed means hopping around on crutches and having to rest three times before you finish exhausted an hour later – then the answer should be no.

Do not minimise the amount of pain you experience in doing everyday things. If you say by really struggling you can manage, then you will not get the support to which you are entitled and you health will deteriorate faster than it needs to.

You can only be honest with Social Services if you are first honest with yourself. When I was asked ‘do you have good days and bad days’, I replied ‘No – I have bad days and worse days’, something I seldom admit, particularly to myself. When people ask how are you, I usually reply ‘I’m fine’ – but not to Social Services, I tell

them how I really am.

Preparing for the assessment is very depressing. It brings to the fore of your mind just how much you can no longer do and have had to give up, perhaps how much you rely on others. However if you do not do this preparation it is not likely you will get the help to which you are entitled.

How much will I have to Pay

Many people worry how much they will be asked to contribute towards their care and so do not ask for support. You can work it out for yourself after you have read the government’s Fairer Charging Policy and your local council’s Fairer Charging Policy which will differ from council to council but must follow the government guidance. Some councils do not charge at all, most do. Those on Income Support or Pension Credit will pay nothing.

Briefly, if you have a partner you are assessed as an individual, not as a couple. Your total income from all sources (except earnings) is added up, and allowance of the equivalent of Income Support or Pension Credit is deducted. House costs such as rent or mortgage, council tax and some heating costs are deducted and then all your Disability Related Expenditure is deducted.

Disability Related Expenditure is anything you purchase because you are disabled that you would not purchase if you were able-bodied. This includes any equipment, large and small, dietary supplements – anything and everything that you would not have to pay for if you were able-bodied. If you really think about it and list everything it will reduce your charge even further, perhaps to nothing, If you do not wish to have a financial assessment you can just pay the maximum your council has laid down.

You are now prepared

You are now ready to contact social services and request an assessment. Councils have a statutory duty to provide an assessment for those who are disabled, but it is polite to ask.

J. H. Murdoch, Member and Direct Payments user. Lincolnshire.

Preparation Leads to Success

[Editors note – Jean has prepared the following notes to help you access the articles that should help you prepare for your Assessment

The LincsPPN fully appreciate that this is not going to be easy or happen overnight [personal experiences]. You WILL need some support to go through all this regardless of how strong you have been in your past life. Whilst it is easy to help someone else deal with all this it is tough doing it for yourself and seeing it all in black and white.

We fully appreciate that not all members are on the Internet but it is likely that you have a family member that is who can help you download the information you need. If you do not have anyone to help you with this then please get in touch either by letter or ring the Phone Team Duty Member and/or contact the British Polio Fellowship on 0800 018 0586

The best Website for Public Services all in one place is

www.direct.gov.uk

There are two allowances that the Government provides:-

1. Disability Living Allowance for those under 65 and

2. Attendance Allowance for those over 65.

1. Disability Living Allowance – sometimes referred to as DLA – is a taxfree benefit for children and adults who need help with personal care or have

walking difficulties because they are physically or mentally disabled.

You may get Disability Living Allowance if:

• you have a physical or mental disability, or both

• your disability is severe enough for you to need help caring for yourself or

you have walking difficulties, or both

• you are under 65 when you claim

You can get Disability Living Allowance whether or not you work. It isn’t usually affected by any savings or income you may have. http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011731 Or ring 0845 7224433 for application forms, have your National Insurance Number to hand.

2. Attendance Allowance

You may get Attendance Allowance if:

• you have a physical or mental disability, or both

• your disability is severe enough for you to need help caring for yourself

• you are aged 65 or over when you claim

Attendance Allowance is not usually affected by any savings or income you may have. http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012425

Independent Living Fund.

Another fund that has been established to help disabled people is the Independent Living Fund.

Set up as a national resource dedicated to the financial support of disabled people to enable them to choose to live in the community rather than in residential care. You need to be under 66 years of age to apply.

http://www.ilf.org.uk

Government legislation – Guidance for Councils.

To read the guidance for Councils provided by Government Legislation you will need to go the Department of Health Website.

http://www.dh.gov.uk

N.B. When you read any of these documents when the Department of Health says ‘should’ it means the Council must do as it says, and when it says ‘could or may’ means the council has a choice.

Direct Payments

Direct Payments are cash payments made in lieu of social service provisions, to individuals who have been assessed as needing services.

http://www.dh.gov.uk/en/Policyandguidance/Organisationpolicy/ financeandplanning/Directpayments/index.htm

Essential Reading

Direct Payments Guidance Community Care, Services for Carers and Children’s

Services (Direct Payments) Guidance England 2003

[This is 68 pages and not available in hard copy.] http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4096246

Useful Reading

A Guide to receiving Direct Payments from your local council: a route to independent living (August 2007) [84 pages]

Available as hard copy Product Number 282882

from DH Publications Orderline, PO Box 777, London SE1 6XH Telephone: 0870 155 54 55 (8 am to 6 pm Monday to Friday ) http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_078092

Linc Pin Volume 6 Issue 1

The Lincolnshire Post-Polio Information Newsletter Volume 6 – Issue 1 — May 2007

WebSite – http://www.lincolnshirepostpolio.org.uk/

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

Photos from MIAMI PPS CONFERENCE

Dual screen with contemporaneous transcript. Above right: Prof. Mike Kossove, Organiser Barbara Gratzke & Prof. Walter Bradley. Below: Tatiana & Luiz Baggio Neto

from Brazil.

Below right: Phyllis Mass & Mary McCreadie.

CONTENTS

Page 3 – Editorial by Hilary Boone. Pages 4 to 6 – Message from your Acting Chair Mary McCreadie. Page 7 – Email Forum. Pages 8 to 12 Ask Dr. Perry—Revised reported by Mary Clarke Atwood. Pages 13 and 14 – AGM Information and Reply Slip. Pages 15 to 18 – Growing up with Polio by Joyce Kelly. Page 18 – Pacing our emotional stress by Sandra Cuadra. Page 19 – Have you found any Aids and Assistive Devices that might help us manage our lives more easily? Slide in Bath—photo on back page. Page 20 – Dates for your Diary, Mobility Roadshow and our AGM. Map showing venue of AGM and Ibis Hotel. Separate 4 page form – What you need to know about me. http://www.lincolnshirepostpolio.org.uk/downloads/extra/wyntk.pdf DONATIONS. Grateful thanks to all that has been received. Names will be added next newsletter. Sincere apologies for not including the names in this issue due to Hilary requesting this information late, and our Treasurer is away from home.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, *** NEW ADDRESS *** P.O. Box 954, Lincoln, Lincolnshire, LN5 5ER, U.K.

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – August 2007

Articles for publication 4th July by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee (Trustees)

Acting Chair & Email List Facilitator – Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk

Secretary– Hilary Boone – hilary.boone@lincolshirepostpolio.org.uk

Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Committee Members – Mary Kinane, mary.kinane@lincolnshirepostpolio.org.uk Di Newman – di.newman@lincolshirepostpolio.org.uk

Operations Team

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk

Phone Team – Di Brennand (Leader), Pat Hollingworth, Margaret Edmonds, Judy Barter Administrative Support – Sheila Dunnett, Pauline Butler, Barry & Olivia Branston Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Editorial by Hilary Boone.

I apologise for the delay in your receiving this Newsletter. I have been told that the older you get the faster time goes as you have more time behind you as experience. Time is just whizzing by some days and I am finding that I am getting less done than I could have done last year. I wonder has becoming an ‘Old Age Pensioner’ got something to do with it? The Miami PPS conference was excellent in content and a great chance to meet ‘old’ and new PPS friends. Sharing of information has and always will be the best way to gain more knowledge about the issues that arise and how others have dealt with them. Two great things came out of the PPS Conference. The first was new initiatives to work together with other PPS groups and the second Dr. Walter Bradley, Professor and Chairman Emeritus of the Department of Neurology, University of Miami congratulated me on the work I had done on the Mayo Study and has offered to work with us. More on that soon.

In this newsletter you will find ‘Ask Dr. Perry – Revised’ article authored by Mary Clarke Atwood of the Rancho Los Amigos PPS Group in California. Dr. Perry has decades of experience of polio and post polio issues and authored many articles.

Joyce Kelly from California offered us the story of her polio life. For me, who remembers nothing of my polio age 5 and little of my growing up years, this gave me some idea of some of the things I might have experienced at school and medical appointments. I just blocked it all. I have included this because so many are reluctant to talk about those years, not only polio survivors but family members as well. Our parents do not really want to open their box on our polio past. Our siblings most probably were too young to really understand what was happening. It might be helpful for your family and friends to read what it was like to have been in our shoes.

Following that I have included – with permission – the text of an excellent email by Sandra Cuadra about how we need to pace our ‘emotional life’ as well as our physical life. This triggered many other emails about the stress that many of us have experienced from health professionals who are lacking in knowledge and understanding of PPS. If your health professionals have not corroborated your symptoms is it any wonder many of us report family members also thinking ‘it is all in our minds’.

When some folks wished me a good time on the Cruise that followed the PPS Conference I realised that I must have worded this badly. Unlike many Polio Survivors representing their PPS organizations neither Mary McCreadie nor I got any financial support towards the cost of the Conference, Hotel or Travel. Much as we would have loved to go on a Cruise afterwards the cost was way beyond our means. The only way I have been able to attend Conferences up to now has been from donations from my family and equity from my home that I really could not afford. We urgently need to raise funds to continue our work. We would love to publish more of our members articles but to do this you have to write them so how about putting pen to paper, or fingers to the keyboard?

AGM reply slip page 13/14. You can send us the information by email, letter, cut the bottom part of the page from the newsletter or download pdf copy of pages 13/14.

MESSAGE FROM YOUR ACTING CHAIR Mary McCreadie

Being thrown in at the deep end is sometimes the best way to learn – and that is certainly how my first couple of months being Acting Chair of our committee has panned out!

Quite apart from the normal duties required of the position, it also coincided with the Miami PPS Conference which I had decided to attend as soon as I heard about it. I had never been to a conference of this type before. It involved a major journey to America with all the associated bits and pieces such as getting my lost passport replaced, getting a photographic driving licence and making sure all the travel and hotel arrangements were in place. I found it all very exciting, but at the same time pretty daunting – especially as PPS has prevented me from travelling very far for a number of years. What I was not prepared for, was the length of time it has taken me to recover from such an adventure. I, of all people, having preached ‘pace and rest’ to everyone, found myself guilty of not doing so, and am still paying the price. Let that be a lesson to me!

The most important things to come from the conference for me, were the friendships and associations that we [LincsPPN] were able to make – which simply would never have been possible otherwise. Finding that our problems are the same world-wide, regardless of race, colour or creed, and that we are not ‘the lone voice crying in the wilderness’ really brought home the enormity of the dilemma.

World Polio Group. Many PPS support groups represented at the conference found themselves galvanised into forming The World Polio Group. The idea came from Kim Dowds, who is the Director of the March of Dimes, Canada. The aim is for PPS support group leaders to come together to share ideas and initiatives, so that polio survivors worldwide can speak with one voice. To this end, an e-mail list has been set up which enables members to talk with one another easily even though we live on different continents. One member – Luiz Baggio Neto – comes from Brazil, where if anything, PPS is even less recognised than it is in the UK. Luiz is the director of ABRASPP (Brazilian Association of Post-polio Syndrome). The group is fighting to get PPS recognised in the International Disease Catalogue ICD 10. If anyone is interested, details of ICD 10 can be found at: http://www.apheo.ca/indicators/ pages/resources/ICD_10_CA.html

ABRASPP is also involved in attempting to educate health professionals and society about PPS, giving support to polio survivors, and trying to stimulate research. Sound familiar?

On the social side, it was really wonderful to meet so many polio survivors, and it would have been nice to have had more time to talk and reminisce, but attending the workshops and lectures were more tiring than I would have believed possible. However, I would particularly like to thank Phyllis and Herb Mass, a delightful couple from Fort Lauderdale. Phyllis runs the Fort Lauderdale PPS Support Group, which meets every other Sunday. Phyllis and Herb invited a friend and me to their home, and then treated us to a truly lovely

day out at Flamingo Gardens, a sanctuary for Florida wild-life and botanical gardens.

Greater contact with Members. A conversation with Linda Priest of the Atlanta Post Polio Association, about their new Care System – A team leader in each area – brought our own situation very much to mind. Last year, we were able to organise a little ‘get-together’ with our South-Western members. This was so successful, that we wanted to extend the idea to cover the whole of the country – but time, health and other commitments rather got in the way. No one person can cover the whole country, so the success of this idea depends initially on members of our Committee and Operations Team being prepared to host such events. Maybe you could be a host in your area? It takes time and effort to organise, even though it’s only a ‘little’ meeting – but our feeling is that members everywhere might enjoy such contact.

We know that many of our members are not in a position to travel to any sort of meeting, and feel a little isolated. This could be easily solved by a regular phone call if it is what people would like. We certainly do not want to ‘poke our noses in’ if we’re not wanted, but I know from experience how good it is to make friends over the phone with other Polio survivors. I am still in touch with a number of members whom I contacted about the South-Western meeting, and I value the time spent chatting with them.

It would greatly help us if people who think this would be a good idea, would let us know. A quick phone-call, e-mail or letter (details on inside cover) so that we can estimate the level of interest will allow us to decide on the best way to arrange things.

Incorrect volume number last newsletter. We have just noticed that the last newsletter has an incorrect Volume and Issue number. Hilary apologises for forgetting to change this. It should have read Volume 5, Issue 12 of 12. If you like to keep your LincPINs in order, please alter the number!

Our Annual General Meeting has been booked for 15 September 2007, at The Memorial Hall, 317 Newark Road, North Hykeham, Lincoln. LN6 9RY. This is the A1434 and the building is almost opposite the North Kesteven School and Sports Centre. All attendees will be sent tickets which will include two mobile phone numbers to contact during the weekend.

The plan for the day is to open the doors at 10.00 a.m. for an AGM start of 10.30. We anticipate from previous years that this will take about an hour. Jean Murdoch will then speak on Direct Payments [Social Services assess you and you are then given a set amount of money to buy your own care]. Jean has just been featured in a county newspaper promotion of the scheme but also speaks from personal experience of some years.

Buffet Lunch will be served from approximately 12.30 p.m.

The Afternoon session, starting at 1.45 p.m. will be workshops with health professionals in attendance. This is a two way process:-

• giving you a chance to air the issues and problems you have had with

assessment, advice, treatment and equipment, which will give the health

professionals present a much wider overview of what is occurring

• receiving advice from the health professionals as to possible solutions We look forward to another full and interesting meeting, and hope that as many of you as possible will be able to attend. Further details in the next newsletter. For those of you who need to stay overnight, The Ibis Hotel is convenient, and well used to people whizzing about in wheelchairs and scooters! The address is: Ibis Hotel, Runcorn Road (A46 off Whisby Road) Lincoln, LN6 3AZ. Tel: 01522 698333. State member of LincsPPN. It is a good idea to book early! We will be holding Get-togethers in the Bar of the IBIS hotel both Friday and Saturday evenings.

Nominations On pages 13/14 you will find a nominations and attendance form for the AGM. You can send us the information by email, letter or cut the slip from the page. Please return it to us by 31st July 2007. Many thanks. Funding. During the ten years that LincsPPN has been operating, the time, effort and money that has been devoted to our Charity by the committee and Operations Team have been phenomenal. The work that they have done, and everything they have achieved, would in the ‘real’ world have cost tens of thousands of pounds, and deserves proper recognition. However, I can offer only a public thank you, to all concerned – both past and present. Lincolnshire Post-Polio Network would not exist, were it not for your valuable efforts. Funding is an ever-present worry, and we are looking for someone who would be prepared to assist in attempting to raise substantial funds. It takes time, dedication and a certain amount of knowledge. If anyone feels that they could help us in this, then please contact us as soon as possible. The more funds we have, the more we can do to further knowledge of PPS and raise awareness. The Mobility Roadshow is probably the world’s largest event of its kind, and is the annual national motor show for disabled people. There will also be a showcase of a great variety of products and services to aid an independent lifestyle. The Mobility Roadshow aims to give anyone with a mobility problem the chance to assess what is available to help solve that problem and most importantly to try out and evaluate the options in a ‘no pressure’ environment. The Show will be held on Thursday 19th, Friday 20th & Saturday 21st July 2007 at Kemble Airfield near Cirencester, Gloucestershire. Opening times are: Thursday & Friday 10am- 5pm, Saturday 10am-4pm. It’s an ideal opportunity for as many of us as possible to get together as well. Hilary, Richard and I will be attending, and suggest that we all meet on the Saturday at 2 p.m. It’s difficult to pick a suitable meeting place without seeing the layout, or knowing the state of the weather for the day. If everyone who wants to join us lets us know we will get back to you. If you decide at the last minute, forget or get lost then we will ensure the folks on the BPF stand (No.D22) know where we are. We look forward to seeing you there!

Mary McCreadie. mary.mccreadie@lincolnshirepostpolio.org.uk

The e-mail forum has proven itself to be a great medium for supporting our online members, especially when things are worrying them. I was really glad that so many of our ‘listers’ were able to offer empathy, experience and encouragement to member Anne Wood, who had to have an operation recently. Hospitals are not the nicest places to be in, especially when you are afraid that the staff won’t understand the particular needs of a polio survivor. Add to that the possibility that the consultant or anaesthetist may not recognise or know how to deal with possible breathing problems during such an op, and it can be really worrying. Despite a more complicated operation than expected, everything seems to have gone well, and Anne has just let us know she is back home and doing well.

This incident happened to coincide with a draft initiative from the Neurological Alliance and other associated bodies. They have drawn up a document entitled ‘What you need to know about my condition’, and it is specifically aimed at providing medical staff with information about the patient’s needs during a stay in hospital or perhaps a convalescent home. It is very simply written, and gives the opportunity to list in detail what you do or do not need. I was so impressed with the idea, that I printed out the draft and filled it in – just to see if it was as good as it looked. Little did I know that three days later I would be rushed into hospital too! I took the filled in form with me, and gave it first to the ambulance crew who used the information to fill in their forms. Their reaction was a heartfelt ‘I wish everyone had one of these!’

Having all the relevant information in black and white meant they didn’t have to ask me when I wasn’t in a fit state to give sensible answers, and there was no chance of mishearing or misinterpreting. The ward staff were also delighted with the form as it made my needs clear and easy to understand. Unlike my last incarceration in hospital, I didn’t have to keep explaining to each and every individual that I couldn’t walk – especially if they took my elbow-crutch away from me! We have worked hard over the last two weeks on an adaptation of this form for Polio Survivors, which I am pleased to say we have included with this newsletter.

As usual many different subjects have been discussed, including a Post Polio Course at St. Thomas’ Hospital in London, which member Glenna Tomlin is attending. We look forward to hearing all about it.

The list did go ‘quiet’ a few times. I always hope that when we have quiet times, it means that you are all out enjoying yourselves.

You may not realise quite how much your posts help others who read them – even if those people don’t actually contribute. So keep on writing! If you haven’t yet

joined our on-line community, you can do so by sending an e-mail to join-pnl@lincolnshirepostpolio.org.uk.

Remember if you are not online you can write to us or if you need to talk to someone then give our Phone Team a ring on 01522 888601. A message will give you the number of the Duty member who will help you find an answer to your questions.

Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk

Ask Dr. Perry – Revised

With Jacquelin Perry, M.D. Reported by Mary Clarke Atwood

Rancho Los Amigos Post-Polio Support Group Newsletter-May 2006

Editorial assistance by V. Duboucheron, J. Perry, M.D.

Updated March 2006

Our thanks to Dr. Perry for so graciously taking the time to review and update these responses. Since retiring after 40 years of dedicated, full time county service, polio specialist Dr. Jacquelin Perry continues her work at Rancho but in a new capacity — as a volunteer consultant. The Rancho Los Amigos Post-Polio clinic continues to be a source of excellent care each Friday afternoon due to the commitment of two other excellent physicians. Dr. Sophia Chun is the current chief of the clinic; her medical training includes both internal medicine and rehabilitation. Dr. Vance Eberly is an orthopaedic surgeon. Both attend the clinic regularly and Dr. Perry is there frequently. Dr. Perry also volunteers as a medical consultant to the Rancho Los Amigos Pathokinesiology Laboratory. She no longer gives lectures.

Question 1. What is the natural progression of post-polio syndrome? Will a person return to the same degree of paralysis that was experienced at onset?

Answer: When focusing on the natural progression of PPS it is important to understand that muscle function depends on three systems:

Control from the brain Sensation from the periphery

The lower motor system from the spinal nerve cell (anterior horn cell) down to the muscle.

The third system is the most important for people with PPS because if you lose the nerve, you lose the muscle. We talk about muscle weakness, but polio is actually a nerve disease that damaged or killed anterior horn cells. This makes a lot of difference in terms of exercise, etc.

Acute: During the acute phase of polio some spinal nerve cells died while others were injured but later recovered. Some people had paralysis but others did not. The effects were like spatter paint. If you had a lot of “paint” you had a lot of damage, while others were just touched lightly. But all survivors were left with a damaged neuro-muscular system.

Recovery: Recovery from polio entailed all three methods of recovering function: Neuro recovery

Between 12% – 91% of the nerve cells that were injured by the poliovirus recovered.

Axon sprouting

New branches of the remaining nerve cells were sent out to adopt the orphaned muscle fibers. The result was that each nerve was then doing 50%

more work, or even up to four times as much as normal. Hypertrophy

The muscles enlarged themselves up to about 40% so they could increase function.

It is not known how much a survivor’s recovery was due to spontaneous nerve generation, nor how much could be credited to patching by the axon sprouting, nor what amount was due to hypertrophy. Upon recovery polio survivors had a random disability in regard to the amount of paralysis. The amount of muscle weakness a person had was pure chance; it depended upon the amount of poliovirus a person had and where it went. Some survivors remained paralyzed, while others looked or felt normal although they were not.

Research: During the 1940s Bodian traced the poliovirus in the motor nerve cells of monkeys. He found that polio, a systemic disease, affected 95% of these cells by either injuring or destroying them. Research confirms that there is some obvious weakness as a result of polio:

Agre found that polio survivors with no current symptoms had only 80% of normal muscle strength. Symptomatic survivors had 60% or less muscle strength compared to the normal group.

Following a four-year study Grimby reported a normal 2% – 5% loss of muscle strength in asymptomatic polio survivors, but for symptomatic survivors this loss may be as high as 13%.

A study by Grimby confirms that weaker muscles work longer and twice as hard.

An electromyographic study by Dr. Perry also confirmed that weaker muscles work longer and twice as hard.

This research says that it is necessary to protect an overused muscle system. The muscles that are grades 3, 3+, and some 4s are getting all the exercise they can tolerate. In order to maintain this function these muscles must be protected from overuse. Dr. Perry added, “New damage is prevented or curtailed by being active, but avoid getting tired. When fatigue begins, STOP and rest. Two 20-minute rest periods a day preserves one’s endurance.”

Now: For many, many years polio survivors have been working with a damaged neuro-muscular system that keeps working harder than ever to meet normal demands. We need to appreciate the fact that each anterior horn cell innervates several hundred muscle fibers and the surviving horn cells have been doing 50% more work than normal. Plus it appears they don’t like being overworked!

Because of this overuse of the neuro-muscular system, new weakness is now developing. Survivors may develop new weakness not only in “polio” muscles but also in other muscles that did not seem to be involved during the acute phase. Although the amount of weakness a polio survivor develops in later life depends upon the original involvement; age is also a factor. Anterior horn cells do not have infinite durability — they begin aging at about 60 years of age. So polio patients aged 70 and up have a natural weakness just from age that needs to be appreciated and put in perspective also.

Question 2. Do you know of any research on treatments for PPS? Answers:

Mestinon: There was a six-center study of the drug Mestinon (pyridostigmine) in 126 patients. Mestinon acts at the nerve-muscle junction by changing the chemistry and making the connection last longer. For many years this drug

has been used for myasthenia gravis patients. Since Grimby’s research has shown that polio survivors can overuse the nerve-muscle junction, the use of Mestinon for some polio survivors makes sense to Dr. Perry.

In this 1995 Mestinon study, Dr. Daria Trojan reported that there was trouble getting statistical significance, but the best correlation between Mestinon and relief versus the placebo occurred in subjects who had 25% or less normal strength, i.e. muscle grades 3+ and down. Dr. Perry believes Mestinon has a role for those who are quite weak, but for people with grade 4 muscles and up she has observed no improvement with its use.

Anti-inflammatory Drugs: These medications have been Dr. Perry’s mainstay because the first reaction to muscle overuse is inflammation. These drugs take away the added insult from having overdone but they are not pure pain medicines. Dr. Perry does not use pain medications per se for PPS because they only mask a person’s overuse and do not help that problem. She wants patients to control their lifestyle and not overdo and thus avoid the pain of overuse.

Growth Hormones: These drugs have been found to relate more to muscle function than to nerve control. They seem to parallel function rather than control function. No significant changes have been found for polio survivors.

Question 3. Are you familiar with electro-stimulation for polio survivors? Answer: The answer is yes and the answer is no. The easiest way to stimulate a muscle is to use one that has a nerve. Therefore, this involves the nerve-muscle junction. Electro-stimulation has been tried on a few polio survivors at Rancho with no affect; Dr. Halstead, a polio survivor affiliated with National Rehabilitation Hospital in Washington, D.C., tried it on himself with no affect; several of Dr. Perry’s patients tried it at Dr. Pape’s office in Canada with no affect. So electro-stimulation is not an answer. Post- polio patients’ problems are with the nerves.

Exercise: Some researchers in other parts of the country favor exercise for certain polio survivors. I observed that their research has been done in parts of the country that have bad weather — so their subjects already have about 3 months disuse due to climate. Here in Southern California we do not have disuse because of bad weather. If disuse of muscles does exist, then exercise may be needed. But if there is no disuse, such as here in Southern California, exercise is not indicated.

Question 4. Can trauma be a trigger for PPS?

Answer: The answer is yes. Following an acute injury there is a period of disuse during recovery. Up until the time of injury a person’s strength has been built up very gradually. There is an old saying that says, “If you can lift a calf every day, when you become an adult you can lift a cow. But don’t ever stop.” This phrase is saying that if you got a very small amount of increased exercise on a regular basis (as the calf got larger) you built up yourself gradually. But don’t ever change the model. As soon as you stop, there is no way you can exercise that gently anymore. It is very difficult to recover on a therapeutic basis after that. Once there has been an injury the model has been changed.

Question 5. Does spinal stenosis occur earlier for polio survivors?

Answer: Spinal stenosis is the thickening of bone around the spinal canal. It does

occur in natural society but it is not very common. I have not seen any PPS patients with spinal stenosis.

Question 6. Could you give us some tips for putting less stress on our upper extremities?

Answers:

Problem 1: Shoulder pain develops in crutch users.

What does a crutch do? It supports body weight. The more weight, the more it goes on your hand, elbows, and shoulders. When the normally powerful shoulder depressors (pectoralis major, etc.) wear out, the shoulder takes the strain and the supraspinatus tendon gets impinged (pinched). This impingement cannot be prevented. Pain indicates it is time to ride — in a wheelchair or scooter if appropriate.

Problem 2: Upper arm pain when reaching overhead.

Reaching overhead uses two muscle systems. A person can avoid overhead reaching by using a reacher when necessary and by not placing things above the shoulders. Find other activities that do not involve shoulder use.

Problem 3: A person’s arm dropping away from the socket (usually about 1/4 – 1/2 inch).

Slings don’t usually work well because they hang from your neck. I prefer to use a gunslinger apparatus to help support arm and shoulder. A gunslinger is a device that rests on the hips/pelvis area and has one or two attached pieces to support the forearm(s).

Some patients use a fannypack [U.K. bumbag] under the arm for support. Problem 4: Shoulder and neck pain when working at a desk.

When working at a desk, do not lean forward to do your work. Instead, try to lean back ten degrees so gravity is helping your muscles. Bring your work to you.

There are three things a person can do to relieve the strain on the upper body muscles:

Eliminate reaching Support the arms Break up activities

Advice: Listen to your body. Feel the aches and pains. Then do something about it. “Be an intelligent hypochondriac!”

Question 7. When should we use cold packs or hot packs?

Answer: Cold for 5 minutes or less is good. It breaks up the edema formed by overuse. Then follow with heat for 10 minutes and REST a while.

Question 8. Are you sending any PPS patients for acupuncture?

Answer: I am not sending anyone for acupuncture although some patients are trying it and getting help. It is not going to do any harm. The reason I do not prescribe it is because I do not have any indication of whether it will help or not

help. When I make a prescription I would like to know the outcome.

Question 9. Can PPS be part of a weakening heart muscle?

Answer: No, PPS cannot be part of a weakening heart muscle. The muscles and nerves to the heart are a different system so there is no direct connection to PPS. A person can be deconditioned by not being active, but if you are not strong enough to be active your heart does not have to be that conditioned. So don’t worry about it. Just don’t get fat and do avoid cholesterol!

Question 10. How can a polio survivor control muscle twitching and/or cramping?

Answer: Muscle twitching is a sign of overuse. It can happen to anyone, not just people with PPS. Cramping is also a sign of overuse. A polio survivor needs to change his lifestyle to avoid overuse of muscles. [Conserve it to preserve it.]

Question 11. What are your thoughts on hip or knee replacement surgery? Answer: For an arthritic hip, total joint replacement is just fine if you have the muscles to control it. A polio survivor needs to have about grade 3+ hip muscles for this surgery to be successful. Otherwise the hip will dislocate.

The knee is simpler to handle because it can be put in a brace since it is a tubular structure. But there is no brace for a hip.

Question 12. How can sleep problems be helped?

Answer: A study on sleep disorders compared people with PPS to average people. Both groups had the same problems — restless legs, etc. I suggest that, before going to bed, people get themselves comfortable, warm, and perhaps take 2 Advil (or something like that) to get rid of the aches and pains. If a person awakens in the middle of the night, it may be helpful to get up and start again. Half the world has trouble sleeping all night. This is not unique to polio.

If a polio survivor has been diagnosed with sleep apnea it is probably related to breathing or swallowing problems from PPS.

Question 13. Is there any connection between polio and meningitis? When I was a baby my parents were told I had meningitis. Several years ago a doctor told me I never had meningitis but I had polio.

Answer: Meningitis is an inflammation of the coverings of the spinal cord and brain. Polio is an infection of the anterior horns of the spinal cord. The inflammatory reaction also involves the meninges. At one time it was called polio-encephalomeningitis. It was actually an involvement of the whole system. The main way of identifying polio was with a spinal tap. If it got into the anterior horn cells it was called polio. There are a lot of neurological problems that are not highly defined, but can be identified by lesions revealed during autopsy.

Reprint permission must be obtained directly from Rancho Los Amigos Post-Polio Support Group RanchoPPSG@hotmail.com

LINCOLNSHIRE POST-POLIO NETWORK AGM 2007 REPLY SLIP – LINCPIN NEWSLETTER MAY 2007

Completed Reply Slip must be returned to us by 31st July 2007. Post to Lincolnshire Post-Polio Network, P.O Box 954, Lincoln, LN5 5ER,

or email the information to agm2007@lincolnshirepostpolio.org.uk

Current Trustees are:-

Acting Chair Mary McCreadie.	Secretary	Hilary Boone
Treasurer	Denise Carlyle

Committee Mary Kinane (British Polio Fellowship Expert Panel Member)

Diane Newman.

The Trustees meet twice a year in person and via the Internet at other times by mutual arrangement. If you would like any more information then please ring or email. You may nominate yourself for any Trustee position. The Operations Team— non-Trustee posts—are listed on page 2. If you have a few hours a month to spare and would like to join them and support our work then do please get in touch.

Nominations are requested for the following Trustee positions:-

Chair

Vice Chair

Secretary

Treasurer

Committee Members (4)

A copy of this reply slip (pages 13/14) can be found at www.lincolnshirepostpolio.org.uk/downloads/extra/agm2007replyslip.pdf

AGM is FREE. Full day including buffet lunch £4 – Without lunch £1.00

Rooms are available at the IBIS Hotel just off the A46 Bypass on 01522 698333 All rooms are now Non-smoking and priced at £48. [1 or 2 guests] 10% discount for Ibis Loyalty Card Holders. Continental breakfast ‘eat all you want’ range of bread rolls and pastries, bread for toast, juice, yogurts, cold meats & cheeses, hard boiled eggs, cereals, fresh fruit is £5.25 per person.

Snacks are available. Take Away’s are permitted. Full meal service in Pride of Lincoln next door, Frankie and Bennies Italian eatery next to that.

Social Evening Get To-gethers will be held as in previous years both Friday and Saturday night in the Bar of the IBIS Hotel.

If you live locally and are able to offer accommodation please contact us.

There are B&B’s in the area but we do not have information as to their accessibility. Contact Lincoln Tourist office on 01522 873256 or 01522 873213.

Why not share a room or transport? If you would like to join up with others then please let us know so that we can put you in touch.

Questions for the AGM or afternoon workshop can be included at bottom of this page.

I …………………………………………WOULD LIKE TO / WILL BE / WILL NOT BE

Attending the AGM on September 15th in Lincoln.

Address

………………………………………………………………………… …………………………………………………………………………

……………………….. Telephone Number………………………….

Accompanying me will be ……………………………………………………………

I enclose £ …………………………………………… for ……………….. tickets.

I enclose a donation of £ …………………….. [First class stamps always welcome]

Dietary request ……………………………………………………………………… I would like to share transport/a room if at all possible. I am Male/Female. QUESTION FOR THE AGM …………………………………………………………

………………………………………………………………………………………… ………………………………………………………………………………………… SUBJECT I WOULD LIKE TO RAISE/BE RAISED AT THE AFTERNOON WORKSHOP. ………………………………………………………………………………………… ………………………………………………………………………………………… ………………………………………………………………………………………… ………………………………………………………………………………………… …………………………………………………………………………………………

Growing Up With Polio in California by Joyce Kelly.

joyjoykelly2@yahoo.co.uk

I was born in 1957 in Los Angeles County, California. At the tender age of four months old I came down with a very high fever and as it subsided my mother noticed that I was no longer moving my legs. I was diagnosed as having contracted the poliovirus. My mother told me that the doctors tried all sorts of medical techniques on me such as wrapping my legs very tightly with elastic bandages, supposedly to help keep my muscle tone intact, and other things that did not work. She also told me how all the neighbours shunned our family after it was known that I had had polio.

By the age of two I was taught to walk with a brace on each leg and use crutches. At age three my legs had not gained back their natural strength so I was given a surgery to cut the ligaments in my legs. This was to keep the atrophying muscles from causing severe leg bone curvature during my growth and development. I can recall being in the hospital for that surgery. Mostly I remember my toys falling out of the bars of the hospital crib, and being lonely. I had no idea what they were doing to me even though I could see the incision wounds on my legs.

I do not remember being conscious that I was “crippled” or “different” as a toddler, but I do remember the braces being very uncomfortable especially when they had a bar attached from ankle to ankle to keep my legs stretched away from each other for some reason. I also remember always having to go to therapy but it had not dawned on me that I was permanently going to be disabled. I had two brothers and three sisters, none of whom had caught polio, but still I did not realise that I was any different than they.

When I was about four years old my grandparents took all of my siblings and me to the Ice Follies. I loved the show and I remember looking up at my grandma, who was sitting next to me in the stands, and telling her that when I grow up I wanted to be an ice skater. My grandma just smiled back at me without saying anything. I had no idea whatsoever that I would never be able to ice skate. A few years later, although I knew I was paralysed from polio, I still did not fully realise the limitations that I would have during my life. At age nine I read a book about a young lady who became an airline hostess. I thought her life seemed very adventurous so I then wanted to be an airline hostess when I grew up. Even at nine years of age, I did not know that I could not become an airline hostess.

I became a Poster Child for the March of Dimes organisation when I was two years old. My photo was taken about once a year to be used as newspaper advertisements for the local Mother’s March of Dimes fund raisers. I can remember having to go to a big annual square dance function to have my photo taken with the dancing club that was also sponsoring fund raising for March of Dimes. Sometimes the photographers would be sent to my school or clinic to take my photo. I did not think anything unusual about my photo being taken until I became five or six years old and began to be annoyed with it. The last time they took my photo was when I had to have it taken with some “old” ladies from some woman’s club and I did not want to cooperate. The ladies wanted me to smile and smell some flowers, and I was just so disagreeable. In my mind, the ladies shoved flowers into my face, although I am sure they really did not go that far. The photo did get taken and

printed but I was never asked to do a March of Dimes photo shoot ever again. One very obvious issue that had a great negative affect on me was that people were often staring at me. It made me feel uncomfortable. I often complained to my dad, “Those people are staring at me.” My dad’s reply became, “Well, if you were not looking at them you would not know that they were staring.” So I began to be wary of looking at anyone in his or her face, even those who were talking to me. I protected myself from people’s glares by looking down most of the time. I became awfully shy as a result of this. I assume staring was the strongest message I encountered which let me know that I was different and that being “crippled” was something to keep people from liking me.

In the 1960s in Long Beach, California, physically disabled children were not allowed to go to the “normal” public schools. We were sent to the “special” school where children with all types of physical disabilities were put. I really did not have any specific complaints about that particular school, but I wanted to be able to attend the same school that my brothers and sisters went to. I complained to my parents about going to the “regular” school but that did not do much good at first. In second grade (seven years old) I began to act out by refusing to read because I did not want to go to that school anymore. The teachers tried to coax me to read; they even tried to bribe me by sending me to the library by myself and having the librarian show me nice picture storybooks. But I was obstinate and I would not open a book no matter how tempting the cover looked. My schoolteacher called my parents concerning my behaviour. Finally, my mom decided to try and get me into the “regular” public school. She had to go to the school district offices. They did not believe that I would be physically capable of “regular” school, but in the end they agreed if a doctor of their choice examined me and thought I could manage “regular” school then they would allow me to transfer. I passed the examination and I was allowed to begin “regular” school the following year.

I made the transition into public school with few difficulties. I could not do all of the sports at recess—but I did fine. I even played Dodge Ball, both inside and outside of the circle! Only a few kids made fun of me, and that was because of the ugly shoes that I had to wear on account of my brace, not on account that I was paralysed. [At age three I was no longer forced to wear a brace on the right leg since it had about half of its muscle ability intact.] I was the only physically disabled child in the entire school and that was just fine with me because I was at the same school as my sisters and brothers. One boy my age did throw some small rocks at me on the way walking to school, which caused my leg to bleed. When I arrived to my class I told my teacher about it, but in those days little was done, if anything, about these types of incidents. It was just considered teasing. I was not emotionally scarred for life; however, I still remember the boy’s name, which I otherwise probably would not have.

My peers in junior high school were less accepting of me, but I think that was more due to the awkward stage kids at that age are going through. Many adolescents will tease anyone who is different than what they think individuals should look like. I do not remember any other students with crutches in junior high school other than those who were recovering from accidents. During the junior high school years I was tripped on purpose (by Mike Lawson—I remember his name too), had food thrown at me during lunch by a group of girls (the type who smoked cigarettes in the lavatories—so you’d just expect that type of behaviour from them), verbally

teased quite a bit, and once had eggs thrown at me by a boy named Don. I went to the dean of the school and complained about that boy hitting me with eggs but he was not reprimanded at all. After awhile I just gave up on complaining to teachers and the school administrators and began staying home from school whenever I could. My mom would let me stay home and she or my grandma would write me notes that I was sick.

My fellow students in high school treated me much better, and during those years several other physically disabled students—even a few in wheelchairs were attending the public schools. There was a special “homeroom” for the disabled kids but I had bypassed it since I had been in the public system for six years by that time. A few times teachers would say to me, “Aren’t you supposed to be in the special homeroom for the handicapped students?” I did not care for their assumptions—it stereotyped me as handicapped, but their question did not seem to be meant as an insult. The laws to include handicapped children in public education had improved so much by 1972 that our school district in Long Beach, California, even had one class of driver’s training for those who needed hand controls to drive—this was before the big education budget cuts in California began to destroy the state’s education system; nothing free like that exists today. So I was taught to drive when I was 15 years old, received my driver’s permit, and had my official driver’s license by the time I was 16 years old.

The worst incident pertaining to my disability in high school came not from my peers, but rather from one of the administrators of the school, Mrs. Hale, known as Mrs. Hell to the students. One day as I was walking to class she stopped me so she could humiliate and accuse me concerning my disability. I was wearing a knit top with a cotton button down shirt over it tied at the waist. As now, and as I will always have to deal with, when I take a step with my crutches they often pull my blouse up—anyone who has had to use crutches will know about this. There was a rule at school that not a bit of skin could show at your waist, and I guess as I walked my crutches pulled up my shirt causing some skin at my waistline to become visible. Mrs. Hale said to me, “Don’t think because you are crippled that you can get away with breaking the school rules! Go home and change your clothes!” I did go home, but I did not come back that day. In this present age a student could bring a lawsuit against the school for an incident of verbal harassment and public humiliation such as that. I have never forgotten what Mrs. Hale said and how she said it with utter contempt; it stands out as the most unjustified thing that ever happened to me throughout all of my childhood.

The only other thing I wish to say about my time in high school is that I had a 3.97 grade point average and no counselor or teacher even took notice. By the time I went to a counselor at school on my own initiative to ask for scholarships to go to college—the counselor told me they were all taken. I did end up getting a small bond from the Lion’s Club, just about enough to buy two textbooks back in 1976. However, I thought that the high school would have been trying to guide a good student into college—but it was never mentioned to me. I was never called into a counselor at all and Long Beach high schools had many counselors in those days so I do not know why I was slighted. No teacher even suggested to me that I should go on to college or gave me any information how to find out about college and scholarships.

Graduating high school and turning eighteen years old in 1975 classified me as an

adult so I will end my childhood details and dilemmas at this point. I often wonder how much I was affected by the things that happened to me and by the things that were said to me as a child and teenager. I think it has a lot to do with why I hate to be disabled, along with all of the other reasons why being disabled is not a preferred existence such as pain, medical expense, and inability to do many tasks and activities. Unfortunately, the degrading by others does not stop just because the disabled person gets older. Actually, in my estimation it has become worse because people regard us as burdens that they are forced by law to accommodate and they take their aggravation out on us in other ways. Being paralysed from polio has caused me to be denied of so many things in life and to be treated as an inferior human being, and it continues to do so today.

Pacing our emotional stress by Sandra Cuadra, Florida.

biglol@VERIZON.NET

We frequently discuss the ways in which we can slow down and pace ourselves physically to stretch out and maintain our mobility. But, just as important is slowing down and pacing the effects of emotional stress we encounter.

Some one on a Polio list responded to an email by remarking that ‘surely 30 miles was not too far to travel to visit G’pa more often.’ I thought at the time that it isn’t a matter of miles, it is a matter of emotional equilibrium involved here. Visiting G’pa may be very emotionally stressful. We may love G’pa to bits but only be able to take him in small doses.

I think we all may have family or friends that fall into a ‘toxic’ category, and because at one time we could absorb the stress being with these people may cause, we feel obligated to continue. This shouldn’t be the case. When you have PPS, you are obligated to pick and choose stressful situations you will tolerate, and do everything in your power to avoid all others.

I no longer go to funerals. The dead don’t care, and the stress involved is too high a price to pay. I remember the dead as they were in life, not in a box. I remember the grieving with cards, flowers and mementos, not my presence at such an emotionally charged event as a funeral.

I see family members who are ‘royal pains in the ass’ as little as possible, while before PPS, I would tolerate them whenever the need arose. I nurture my relationships with family that do not drain me emotionally and bring stress into my life. I am not saying we should put on rose colored glasses and shut out loved ones because we have PPS. On the contrary, I say we should look at our emotional life as we do our physical being and prune out the stress.

[Editors Note – This really hit home as I have virtually no relationship with my brother and now both parents have passed on wonder whether I will ever see him again, which saddens me. My last contact was a year ago when he told me by email that the reason we did not have a good relationship was because of my imaginary health issues. It upset me considerably, more so I realise now because of the huge amount of time I have given to LincsPPN work. Now I have calmed down enough to deal with this I now wonder should I just leave this or is there a way I could redress this without incurring too much stress? hilary.boone@lincolnshirepostpolio.org.uk]

Have you found any Aids and Assistive Devices that might help us manage our lives more easily?

Bathing – Soaking aching muscles is something we all want to do but many report they have been told that a flat floor shower is all that Social Services will support. Before making any decision you need to research all the options. It is imperative that you try before you buy.

Member Sandra Walline, had a video made of how she manages her life in her home, putting on a swimming costume for the bathroom filming. An excellent idea to demonstrate our ‘HOW’ to health professionals.

Dr. Lauro Halstead, one of America’s top PPS Specialists – and a fellow Polio Survivor – advises that to ensure hand rails and accessories in the bath or shower are in the right place you need be wet before deciding.

Whilst searching for a new bath we found the following which we look forward to viewing in July at the Mobility Roadshow.

The WIBCO—Walk in Bath Company – Slide in Bath. STOP PRESS – Stand D12 Mobility Roadshow July 19 – 21 2007.

Wibco state they invented the first ever walk-in bath with an inward opening door in 1996 are confident that this new approach will benefit many people. This new model can be used independently by anyone who has even modest upper body strength. If a carer is needed to help the bather, then very little effort should be necessary to assist the bather to enter and exit the bath.

Seat Height is the same as a wheelchair. No need for a lift or hoist. Anti slip base. No electrical power required. Easy installation. Double wastes for fast emptying. Supplied with a TMV3 thermostatic valve and taps, Height 1130mm (44″). L e n g t h 1315mm (52″). Width 700mm (28″). Available in white only.

They can only fit within 50 miles of Portsmouth but state that any competent Plumber can do this within a day and they are only a phone call away. The Universal bath, on a supply only basis delivered anywhere in mainland UK, is £2500.00 excluding VAT. The optional automatic hydrotherapy spa system is £599.00 + Vat. If the end user, or some one in the same household, has a disability (they do not have to be registered disabled) then the purchase price can be exempt from VAT, this is a simple procedure that only requires the signature of the user and description of the disability. We can supply ‘Eligibility Declaration Forms’ on request. This is a simple statement that will accompany your order confirmation. http://www.wibco.com/walkinbath_Universal.htm

WIBCO, Unit B3, Mountbatten Business Park, Jackson Close, Drayton, Portsmouth, Hampshire, PO6 1US, United Kingdom

Tel: +44 (0)23 9237 2000 Fax: +44 (0)23 9238 4040

Why not write and tell us about your aids and assistive devices. Why were these prescribed for you/did you choose them. If, like Kathleen Burrell, you have made these yourself then please send details and photographs. What make of car/van and hoist/ramp/lift do you have? We would like to devote a LincPIN issue to this subject as well as it being our main AGM topic.

IBIS HOTEL

MEMORIAL HALL 317 NEWARK ROAD [A1434] LINCOLN LN6 9RY

THE LINCPIN SEARCHES FOR AIDS THAT MIGHT MAKE OUR LIVES EASIER

SLIDE IN BATH FOUND

By WIBCO

See info page 19

and at the Mobility Roadshow

July 19—21st Cirencester. Stand D12

Dates for your Diary

Meet other members at 2p.m. on Saturday 21st 2007. See page 6.

Additionally, Hilary and Richard Boone are booked in at the Swindon West Holiday Inn Express, just off junction 16 of the M4. They will be arriving mid-afternoon Friday 20th and leaving Sunday 22nd after lunch. So if you can’t make 2pm on the Saturday, they would be delighted to see you at the Hotel sometime during week-end. Contact Hilary to arrange a date and time (see page 2 for contact details).

Linc Pin Volume 6 Issue 1 Read More »

Linc Pin Volume 5 Issue 12

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 12 — February 2007

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

‘Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one’. © C.S. Lewis Posted on members email list by member Hazel Coleman

WebSite – http://www.lincolnshirepostpolio.org.uk

CONTENTS

Page 3 – Editorial Pages 4 to 5 – Message from the Chair Pages 6 to 11 – Origami Seagull by Member Robin Brierley Pages 12 to 14 – A West Country Childhood, featuring Member Bridget Langdon Page 14 to 15 – The Driving Test by Mary McCreadie Pages 16 to 17 – “Handicapped” Suite and “Handicapped Person” are now living together by Viola Pahl Pages 18 to 20 – Email Forum Page 21 – How many of these did you know? Page 22 – Helping you with your Polio and PPS related Problems Page 23 – Other Organisations that may be able to help you. Page 24 – Australian PPSer June Middleton receives Guinness Book of Records Certificate for living 57+ years in an Iron Lung

Donations towards our work, for which we are most grateful, were received from

Jim & Jenny Rayner, Sylvia Fortune, Lesley Forsyth, Jean & Jim Simm, Heather Chadwick

Lynn Hobday, Anne Wood, Yvonne Liggins, Diana Nash, Vivien Holland, Brenda Fleet Ann Williams, Leonard Reeves-Hall, DW& S Rose, Margaret Edmonds, Mrs J Curtis, Yvonne Grosse

And donated expenses from the Trustees and Operations Team USA—Robert Price, Jim Whitlock and $100 in memory of John Hartman.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, *** NEW ADDRESS *** P.O. Box 954, Lincoln, Lincolnshire, LN5 5ER, U.K.

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – May 2007

Articles for publication 4th April by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Acting Chair & Email List Facilitator – Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk

Secretary– Hilary Boone – hilary.boone@lincolshirepostpolio.org.uk

Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Trustees/Committee Members – Mary Kinane, mary.kinane@lincolnshirepostpolio.org.uk Di Newman – di.newman@lincolshirepostpolio.org.uk

Operations Team

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk

Copyright of material published in the LincPIN is retained by The Lincolnshire Post-Polio Network and/or the original author/s). Reproduction and redistribution of any material via any media requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author’s). Where permission is given, original material must include a credit to the LincPIN; material from other sources should credit the original publication.

Editorial by Hilary Boone.

Please note the NEW ADDRESS for the Lincolnshire Post Polio Network is on the Front Page. Please use this address for all correspondence apart from membership which should continue to be sent to the Membership Secretary address on Page 2. I am pleased to include a very poignant fictional story based on fact ’Origami Seagull’ by Member Robin Brierley a.k.a. ‘Hermit’ starting on Page 6. The isolation hospital, was originally built in 1893 to cope with the diphtheria epidemic. It was part of the old West Norwich Hospital, which in it’s turn had started as a workhouse. Apart from the installation of the patient’s radio system around the 1940s it had changed very little. Goodness know what germs were lurking in the cobwebs. Please note the warning at the beginning of this story – it is likely to open the box of anyone’s memories who was around during those years.

Viola Pahl’s story of her move to residential accommodation is something some of us might have to consider in the future. I hope the points raised will help if you get to the stage of looking to see what is available.

Shortly after joining the LincsPPN, member Bridget Langdon agreed to take part in a television program ‘A West Country Childhood’ made by Testimony Films in Bristol and shown on ITV West. This was videod/dvd and if you would like to see it then write or email us. Read the Western Daily Press article starting on page 12. Viola Pahl, a Canadian PPSer and author has often been a contributor to the LincPIN. Her husband passed away recently and she decided to move to a retirement home. She has written up this ’moving’ experience so that anyone considering this might have advance notice of some of the things to look out for. On the back page we congratulate June Middleton in Australia on her Guinness Book of Records achievement of living in an iron lung for 57 plus years. Thanks to Dennis Lloyd for sending us this story. Two of our UK members are now going to be spending the winters in Australia increasing our contact with this country.

Miami PPS Conference Update. [April 9th to 11th, entitled ‘Partnering for a better tomorrow’.] ‘My husband and I’ [First time I have said that] are pleased to report that Jann Hartman, Mary McCreadie, Paul Stanton, Ros Sinclair and her husband have also registered. We look forward to reporting the latest info in the next issue. We were very sad to learn of the sudden death of Monica, Sister of California member Jean Hill. In her early career as a nurse she looked after polio patients and was looking forward to writing a story for the newsletter. She attended the AGM and had become a great friend of Lincoln member Lynn Hobday.

The Trustees and Operations Team of the LincsPPN are all volunteers – all but one living with PPS – and give up numerous hours each month to assist in accessing and disseminating information for the rest of the members. To share the workload out a little more two of your Trustees have changed ‘chairs’. See next page.

As you will see, Mary McCreadie is the new acting Chair of Lincolnshire Post-Polio Network, as of February 2007. I remain an active Trustee, and continue to concentrate on the collaborative links which we have seen established with the British Polio Fellowship’s Chief Executive and Trustees. I am now a panel member of the BPF’s Expert (Patient) Panel, which includes a number of medical and allied health professionals and well as administrative staff and a trustee of the BPF; so far we have had two meetings and we are being led by Sir Bert Massie, Chairman of the Disability Rights Commission and who helps guide the Panel in its objectives. The remit of the panel is to help the BPF to bring about overall improvements for their members, who number in the thousands. You might like to look up the BPF website, www.britishpolio.org.uk (see under “New” Expert Panel) as they have decided to post minutes of these meetings as a way of encouraging transparency by the organization for its members. Objectives of the Panel are: to raise the profile of issues related to Polio and its associated effects including Post Polio Syndrome (PPS); to provide direction and advice on matters of strategy, research and policy; to engage effectively with health and allied professionals to promote knowledge sharing and networking across the professions; to ensure publications and other literature produced by the Fellowship are accurate, up to date and easy to understand; and, to underpin and give additional credibility to the work of the Fellowship.

There was a timely need to establish links, beyond the informal ones which, as you know, develop between polio members of different organizations. It is my view that this more formal collaboration (the work of the Expert Panel being a good example) can only serve to strengthen the resolve of those who, like our Founder Hilary Boone, have raised their heads above the parapet and campaigned on behalf of the rights and welfare of polio survivors who experience the late effects of polio and/or PPS (including themselves) for many years. I would also like to thank Hilary for continuing to network and keep people in touch with each other, as well as fostering new alliances with a rights-based focus on disability issues and health. One of our pressing concerns continues to be campaigning for improved access to appropriate orthotics services in the UK. In my attempts to highlight what is a national problem with regard to adequate orthotic provision, I continue to sit as a patient representative on the University Hospitals of Morecambe Bay NHS Trust Orthotics Review Committee. Flagging up service user/ patient representative viewpoints allows us to feed into a system which didn’t used to consult patients on issues which directly affect them. The issues which are brought up for discussion and/or review have several times included a polio perspective. I believe that this committee forces providers to be more transparent in their decision-making regarding various aspects of orthotics service, and it puts a face to what is often an unrecognised (post

polio) patient profile. More recently, I have been asked by the review committee to look into reviewing patient opinions about the service – and would indeed welcome feedback from members, especially in the north west of England. We acknowledge that this is not yet a national review process, but think it is a good starting point.

Hilary and Mary McCreadie are attending the Miami Post Polio Conference, entirely at their own expense. I know that Mary McCreadie is full of enthusiasm in her new role, and would love to network more. Our resources remain limited at this time, so we still struggle to make these networking opportunities possible. We hear that there are plans in the pipeline to hold an England-based conference which would gather together our island groups (England, Wales, Scotland & Ireland – both Northern Ireland and the Republic) as well as others in our ever-expanding Europe, but this is in its early stages.

I would like to thank you, the members, for supporting me in my role as Chair for the last 2+ years, and especially to thank the team of dedicated people who continue to keep the operations machine oiled and running, with little reward. Please do let Mary McCreadie know that you support her in her new role, and support us by writing in with your news, views, stories and requests.

Best,

Mary Kinane, B.A. (Hons) mary.kinane@lincolnshirepostpolio.org.uk

Dear Members,

Sharing our workload is imperative if we wish to maintain our own health, and following discussion amongst the Committee, I agreed to take on the position of Acting Chair as from 7th February until our AGM in September. I am pleased that Mary will be staying on the Committee as a Trustee, and I would like to thank her for the time, effort and energy she has put into the job of Chair during the past two and half years. I wish her the very best in her work as one of our representatives on the Expert Panel.

As Acting Chair, I will do the very best job I can for the committee and membership of LPPN, and look forward to a busy and productive time.

Mary McCreadie, mary.mccreadie@lincolnshirepostpolio.org.ukk

Editors Warning. Reading this excellently written and poignant story could evoke unexpected emotional responses for some readers. You may remember nothing, like me. You may have been young and could only understand and remember at the age level of language that you had at that time. You may remember it all. Regardless of age, there can also be words, sounds, smells, and pictures that trigger memories.

Origami Seagull

It was November 1952, tomorrow would be Guy Fawkes Day. The box of fireworks was safely stored in the bottom of the airingcupboard, away from the damp that pervaded the old house with its coal-fires and draughty door-frames. In the triangle of neglected kitchen-garden behind the back-lane garage, a pyramid of brushwood stood tall, awaiting only a priming of crumpled newspaper and the pyromaniac match.

At the dark end of the afternoon, school had been out for half an hour and most of the children, like Rob, were already home. He should have been excited, rushing around with a torch, making final preparations, finding one more forkful of garden rubbish to thatch the bonfire, collecting long-necked squash bottles to launch the rockets and from somewhere in the attic, unearthing that old camping-stove to kindle the reluctant sparklers. But since returning home from school, the ten-year-old had not been well. His mother took one look at his flushed face, noted his listless collapse onto the old sofa in the alcove at the back of the breakfast-room, worried at the lack of clamouring hunger, then felt his forehead and sent him straight to bed.

At five o’clock she went upstairs to check on him, carrying a tray with milk, biscuits and a saved copy of the Eagle, usually issued several days late as an incentive to be good. Rob wasn’t interested, the bedclothes were scrambled, he could hardly speak. The room felt as if a three-bar electric-fire had been left on for hours. She checked his temperature – a hundred and two – then called the doctor.

The doctor got there after evening surgery and examined Rob thoroughly, listening carefully to his complaints of strange flutterings in the stomach and pains in his arms and legs, then dispensed penicillin directly from his black-bag – something they did in those days – and promised to return in the morning.

Eventually the fretful and feverish night was over. The doctor repeated his examination, took samples and went away.

For Rob, the day was a waking nightmare of burning fever, but, towards the end of the afternoon, his temperature dropped a little nearer normal and he rallied enough to show his disappointment at having to miss the fire-works. It is difficult to refuse a poorly child, especially when a little effort makes a satisfactory compromise. His parents decided that a limited Guy Fawkes celebration could be held. The bonfire, so far from the house, was out of the question, but there was space on the terrace outside the French-window, to let-off the

smaller fireworks. Rob was carried downstairs wrapped in an eiderdown, then ensconced on the big old sofa and turned to face the window.

Vesuvius, represented by several different sizes of gunpowdery cardboard cones erupted in unnatural ruby-reds, traffic-light-greens and magnesium-whites. Roman candles produced either one more, or one less, soaring ball of light, than advertised on the packet. Crackerjacks jumped unnervingly at mother’s skirts, Catherine’s sparkling spirals whirred on the fence-post and impatient rockets tried to whoosh-off father’s hat.

Rob forgot his fever and watched the bright-eyed magic, but before the final rocket had flown over the oak-trees, he had fallen asleep. Later, when he awoke, he was back in his room. The doctor was standing by the bed, mother beside him, looking pale and worried. Father again wrapped him in the eiderdown and carried him downstairs to where an ambulance was waiting.

The ride to hospital was strangely dreamlike. The vehicle swayed, Rob’s mind seeming to catch up with each movement in time for its dizzying reversal. He didn’t know who was with him, but there were comforting voices and a hand in his or on his brow. Then, when they stopped, there was a sudden burst of frosty air, jolting trolley-wheels and a sharp instruction to ‘Hold the door.’ Bright light beat at his eyelids, turning the world a glowing red. Hands pushed under him and lifted him onto a bed. Then he was alone, the brightness gone, leaving a strange yellow twilight glowing above him He tried to move but found himself too weak. The effort brought back the fever and his mind floated deliriously free in a maze of lingering, fire-ball after-images.

They didn’t let him rest. In the early hours, light blazed again, just one bright white fire-ball, hovering above his bed. He opened his eyes, but couldn’t stand the dazzle. His momentary glimpse of white masks and coats would have been terrifying, had he been conscious enough to care. They pulled at him, pushed him from side to side, forced him to sit up and held him there, hit him on the knees and elbows, drew patterns on his stomach with sharp sticks, then did the same to the soles of his feet. They muttered and grunted among themselves, ignored his moans of protest and eventually, like demons of the lightbulb, left him shuddering in the dark.

For four days his only waking moments were when roused, either by the frightening white demons, or by a routine succession of nurses who helped him to drink or encouraged him to urinate. In Rob’s mind, a universe of stars, the deeps of the ocean, billowings of sun-stitched clouds and the groaning depths below the mountains of the Earth, held sway. He soared high, tunnelled low, exploded with the galaxies or crushed himself to nothing under seeming tons of bedclothes. Reality was reversed, it was his waking moments that were nightmare.

On the fifth day, as night paled to dawn, he awoke. The bright stars of his delirium had become screaming seagulls wheeling against

the grey sky beyond the window. For the first time he was able to see the detail of the strange room and the alien territories beyond his bed, the erstwhile domain of the light-bulb demons and land of starch encrusted nurses.

He lay, curled-up on his side, facing the glooming sky where bits of it had become trapped between the slender bars of the tall sash. Below the high sill, the space was filled with the massive creampainted arcades of a cast-iron temple that radiated warmth into the sharpness of the air. Above it, the glazing-bars swam in the rising current, exaggerating the movements of banshee gulls as they skirmished, shrieking past the window, diving out of sight, then reappearing with loaded beaks and rising amidst battles for possession.

To the left of the radiator, a huge rectangular china sink, with curious long-tailed taps, separated it from the door. A heavy, greenpainted affair, with panels in the lower third and nine grey-sky-andseagull-framing panes above. Whatever the birds were fighting over must be just beyond it. Sudden silence heralded its opening; a harsh grey woman, like a fragment of that November sky, hauled down and stuffed into a tight, dark-blue uniform, bustled into the room.

‘It’s your breakfast, they’re eating!’ she announced, ‘You should have been awake when we offered it to you.’

Rob, to whom these were the first words he had been consciously able to understand since the ambulance man had asked for the door to be held open, was frightened; he burst into tears. The ward-sister called for a nurse to, ‘Sort him out!’

The nurse, a wide-faced girl with fair hair and a pale-blue uniform, came in and sat down beside the bed. There was warm tea in a spouted feeder; she applied it with a smile. ‘Can you manage to hold the cup?’ she asked. Rob thought he could, that is until he tried and suddenly realised something was seriously wrong. His left arm would hardly move and there was no way his head would rise above the pillow. He struggled, trying to pull his right arm out from under him, but seeing his distress, the nurse relented and continued to help him drink. As soon as the routine was over and the nurse had left, Rob wanted to return to the warm, wonderful dreamland of his recent delirium, but his retreat had been cut off by the end of the fever, all he had now was the pain of discovery to fill his head and the sharp cries of the gulls for company.

By mid-morning, after another visit from the nurse, this time with the spout delivering orange squash, the door opened and a tall man strode in and stood by the bed. Rob, fortunately not recognising him as the leader of the light-bulb demons, looked up from the pillow in silence.

‘Hello, young fella,’ said the demon-in-disguise, the words more friendly than the tone of voice, ‘I thought you’d like to know you’re suffering from Heine-Maiden Disease, named after the doctors who

discovered it.’ – for Rob, this was just another layer of confusion, another flock of feathers falling through the pillow of his mind. Whatever reaction the doctor had expected, Rob failed to give it.

‘You might have heard it called “Polio,” poliomyelitis, that is.’ The man paused – the child still had nothing to say – and continued, ‘I expect your parents will explain. Now all you’ve got to do is rest and recover.’ – Rob got that bit, he managed a wan smile.

‘Is there anything you’d like to ask?’ concluded the doctor, hovering a moment before hurrying out.

Ask? Well, no doubt there would have been, had Rob understood what had actually happened to him, there was the problem with his left arm for a start, and why couldn’t he sit up. He was an intelligent, technically-minded sort of kid, nobody who had seen his Meccano set in action would dispute that.

What he should have been told, was that polio effects the nervous system; that parts of the body work a bit like model cranes. That the bones are moved about their hinge-points by strings of muscle. If there is nothing to tell the strings to move, then nothing works. Polio attacks the cells that give the muscle-strings instructions; that was what had happened to Rob’s arm and much of the nerve-structure down his left-hand side.

Muscles which do no work, fade away and leave bones unsupported, so they become unbalanced and grow awry. Nobody told Rob any of that, in fact, apart from the junk about Heine and Maiden, nobody had told him anything, not even where he was. He thought it was probably a hospital; but the isolation ward looked more like a prison than a hospital.

The room, a cell about twelve feet cube, was divided, on two inner sides, from other similar cells by five-foot of solid partition; the space above filled with glass. The only access was that outside-door, the one besieged by seagulls. Light came in through the tall window or from the single central light with its dazzling white-enamelled shade, or when he was alone, as a distant yellow glow from the glass-walled nurse’s room, filtered through the intervening cells.

Apart from occasional items, such as the door and the waste-bin, where the pre-war grass-green paint had been retained, almost everything was painted glossy-cream. Glossy that is, where it had been washed, the lower halves of the two solid walls were clean, but above that they were smutty, cobwebbed and discoloured. The junction between cleanliness and microbe laden squalor was wavy, graded and banded according to the changing stature of subsequent generations of cleaners. Apparently, the hospital’s policy had been either to employ smaller and smaller people or supply them with lower and lower chairs to stand on.

With nothing better to do – he was alone and locked to his pillow by the debilitating illness – Rob observed his surroundings. Four walls,

ceiling, red quarry-tiled floor, those portals to an outside world dominated by seagulls, a locker, the radiator, sink, two chairs and his bed, there was nothing else.

Curiously, the bed, despite being closest, was the last thing he examined. It felt large, but that was because he was curled-up small. It was hard; under the mattress his hand discovered a platform of boards, not an inner-sprung divan, like at home. The ends were silverpainted metal tubes, a mixture of builder’s scaffold and tiger cage. At each corner were sturdy posts carrying an overhead frame.

Then he noticed something new, almost out of sight, hanging behind the grillwork of the bed-head. It was a set of headphones. He struggled a few inches across the acres of his pillow to get a view between the bars. It was a headset just like the ones in every black’n’white war film he’d ever seen. Beside it, in the centre of a metal plate, was a rotating switch, with ‘Off’ at the top and four numbered positions. Here, at last, was a worthwhile target for investigation, he began to uncurl, take stock of his position.

Until then, the pillow had been his life-raft, something to cling to, as if he was slowly drowning in a rumpled sea of hospital sheets. The nurse was constantly complaining that whenever she came to tidy him up, all she could find was a heap marooned against the foot of the bed. In fact, it was from that position that Rob began to plan his campaign, and from there too, the bed-head was a far shore indeed.

He scouted the distant coastline through a telescope of hollowed hand. The shore was defended by the breakwater of the bed-frame. Would that be help or hindrance? Behind the defences, a sheer and shiny, gloss-paint cliff loomed high, topped by the rolling landscape of part-washed grey hills supporting a filthy, smut-stained sky. Here, unlike the real sky outside the window, he must imagine the seagulls and the gathering tempest he needed to complete his plan.

The mind-storm broke, calling up the breakers that helped him during the exhausting swim from the foot to the head of the bed. The final effort, pulling himself one-handed as high as he could onto the life-raft pillow, nearly sunk him, but at last, he had a hand against the cliff-wall. He walked his fingers up towards the knob, grasped and hung on, then clicked it one notch to the right. Suddenly his imagined seagulls had gained a scratchy, twittering voice, but they were too high and far away for him to hear the song. He subsided, satisfied and floated with the linen tide, as waves of crumpled sheets washed him back to his haven at the foot of the bed.

When Sister came in with her favourite question about the opening of bowels, she was annoyed that someone had left the earphones switched on; she turned them off, fussed with the loop of trailing flex and centred the headband on its bracket. ‘There will be visitors, soon,’ she said, following that with her second favourite sentence, ‘Sort him out will you Nurse.’

‘Visitors?’ Who could it be, he had asked for his mother, but had

been told this was an isolation ward and epidemics must be contained. But, wonderfully, it was his mother. She had to stand by the door, not allowed to hug him; so she’d brought cheerful words, pencils, paper, heaps of comics and a jar of peanut-butter.

When, too soon, Sister whisked her away, he read the comics. All his favourites were there: Beano, Dandy, Lion, Eagle, Film-Fun and Practical Mechanics.

The drawing-paper he folded into a seagull, an origami recipe he was delighted to find in the Lion. Now all he needed was some way to fix it in the smutty sky above his bed-head. Nurse, helpfully, stuck it to the overhead frame with shiny pink sticking-plaster; it wasn’t what he wanted, but it would have to do.

Later, Sister declared it both a collector of germs and an affront to tidiness, she ripped it down and dumped it in the bin. He was angry and showed it. She took away his comics, refused to switch-on the light and left. The shadowy frame above his bed threatened like prison bars. The gulls had already returned to the sea, leaving only a splatter of sleet and the mournful howl of winter’s wind to rattle the sash. He lay there sobbing, his comic lifeline from the outside world torn away. Once more, he was alone, adrift in the frighteningly alien world of the mind.

Outside the sky darkened into night. The distant yellow light came on in the nurse’s office Nobody came near him and eventually he fell asleep. Almost at once, the origami seagull stirred and rose, whole and haloed white, from the grave-like hollow of the waste-bin. Rob watched as it circled amid the scarlet whorls of his unforgiving anger, trapped in the shadows of the room. The pale reflection of the glosspaint cliff attracted it to the bed-head and there it roosted, to await its fellows.

Morning arrived, and with it, nurse and warm tea, bedpan, marmalade and toast – no sign of his peanut-butter. He left the crusts, but Sister caught him before the nurse had time to give them to the birds. She made him eat them, standing there, hip-handed to ensure obedience.

The origami seagull watched from the top of the bed-frame, unseen by all but Rob. When Sister went to leave, it flew, beating strong, wide, wild, white-paper wings, then passed straight through the tall sash-window to rally a feathered squall of gulls from the high grey clouds of dawn.

As the door shut behind Sister, he watched the ravenous seagulls dive past the window, knowing they would be dining well. Soon, screams and cries confirmed it. After that, he felt a little stronger, more able to make the journey to the bed-head, and solve the mystery of the headphones in time for Christmas.

Hermit <munzly_hermit@BTINTERNET.COM>

A West Country Childhood

On Tuesday 6 February, a program was screened on ITV West which documented the effect of childhood polio on three survivors. One of these brave people was our own member Bridget Langdon. The program was sensitive and poignant, and showed without sentimentality just how courageous polio survivors are – and these three deserve every credit for having the emotional bravery to tell their stories.

Aleisha Scott of The Western Daily Press wrote the following piece about the program, and we have very kindly been given permission by the News Editor of the Western Daily Press to copy the text here:

BLIGHTED BUT NOT BEATEN

A polio epidemic after World War II hit the West Country harder than any other part of Britain. Ahead of a new television programme, Aleisha Scott talks to three people whose childhood was blighted by the disease:

Mothers and fathers once lived in fear of a virus that could strike without warning, leaving their children paralysed or at the mercy of the dreaded Iron Lung.

At its peak, polio paralysed and killed half a million people every year, the majority of whom were children. In the West during the 1950s, three times more children contracted polio than the national average.

Three people who had to rebuild their lives after being struck down by polio are sharing their experiences in the final part of the ‘A West Country Childhood’ series on ITV 1 tonight. Being strapped into a frame for most of

his early childhood taught Phillip Whitmarsh, a valuable lesson. In 1945, at the age of four years, Mr Whitmarsh fell over while out playing and couldn’t get back up. He spent the next 10 months in Bath Orthopedic Hospital paralysed from the waist down.

“What I found most scary was the doctors in white coats and nurses standing around looking at me,” said Mr Whitmarsh, now 66, who lives in Frome.

“I remember undoing the ties on the frame so I could sit up but eventually the nurses tied them in such a way that I couldn’t get to them.”

After physiotherapy, Mr Whitmarsh was finally sent home but wore callipers on his legs until he was 14.

“One leg was very weak and it never recovered, it was also three inches shorter than the other,” he said. “I say now that my good leg is double my age, because it did most of the work for most of my life.”

Mr Whitmarsh didn’t start school until he was six, was unable to read or write and only attended class in the mornings until he was 10.

“I was put into the dunces’ class for a year before going into mainstream classes,” he said. “I failed my 11-plus and by the time I was 13, I had only done two full years at school. I managed to catch up thanks to a wonderful maths and sports teacher who turned my life around. He told me I had a brain and I should use it because I wasn’t going to earn a living digging holes in the road. That was the first time in my life that someone had told me that I had ability.”

After leaving school with a string of G.C.E.s, Mr Whitmarsh worked for Frome Rural District Council. He then worked for an insurance company,

rising to area manager before he and his wife bought a shoe shop. He later started a business as an independent financial advisor. After retiring, he became the Mayor of Frome and is president of Frome Rotary Club.

“They tried to write me off but I wouldn’t have it,” he said. “When they put those irons around me I wouldn’t take it lying down and I’ve been like that ever since. I was bullied at school but they soon realised they couldn’t push me around. “Polio has been eliminated in this country so no one will have to go through what I went through.”

—————*————— DESPITE being paralysed since he was a boy, Professor Robert Giddings counts himself as lucky. Having completed a doctorate and written 20 books including an autobiography, Prof Giddings, 71, has ensured he takes every opportunity given to him. Struck down by polio at 11, Prof Giddings never recovered the use of his legs. But he says he was lucky to get such wonderful support from his family, friends as well as doctors and nurses. Prof. Giddings, originally from Bath, was about to start grammar school when he collapsed with a fever while on holiday. After finally being diagnosed with polio, he spent the next two years in hospital. “I was completely paralysed apart from my left arm,” he said. They tried to get me walking with leg irons. I was almost 13 when I returned home. My father knew how important schooling was and he got me into the Lord Mayor Treloar’s Cripples College and Hospital, which was a training college where you could learn a trade. But they could never got me mobile enough so they sent me home.”

Prof Giddings then had an operation to bend his knees and straighten out his

feet so he could sit up and wear shoes. He secured a place at the commercial college in Bristol where he took his Olevels and A-levels before winning a scholarship to the University of Bristol where he did a BA and MA. He taught in secondary education for many years including 18 years at Bath Technical College. He got a doctorate in Victorian literature from Keele University and then became Professor of Communication and Culture at the University of Bournemouth until his retirement.

“I try to lead as normal a life as I can but I believe that the rights of disabled people have a long way to go and we still face prejudice,” he said.

—————*————— Decades on and Bridget Langdon is still coming to terms with the full affects of polio. She caught the virus at 18 months old and has now found out she has post-polio syndrome (PPS).

“Polio was known as infantile paralysis in those days and it was not until I was 15 when I was having an operation that the surgeon confirmed I had had polio,” she said.

“At two years old, doctors discovered my spine was curving and I had always had some sort of breathing problem. I wore callipers and had a brace around my stomach that went up to my arms and irons to hold my back straight. I even had to sleep in a plaster case. I’m supposed to be 5ft 8in but because of the curvature of my spine I’m 5ft.” Despite being told that she would never be able to have children, Mrs Langdon, who lives near Yeovil, has three children and five grandchildren.

Relatively unknown, PPS affects polio survivors years after recovery from an initial attack. It leads to new weakening in muscles that were previously affected by the polio infection as well as in

muscles that were unaffected.

“Until this week I had not seen an orthopaedic specialist since I was 16,” she said.

“For years I had minor things wrong with me, like aches and pains. Last December I read an article about Lord Snowdon who also sufferers from PPS. I looked it up on the internet and went to see my GP. It explains a lot, but no one knew much about it. There must be thousands of people out there who had polio but do not know about PPS.” ©Western Daily Press, 6 February 2007 As well as coping with tremendous problems resulting from polio, Bridget also suffered when the doctors overseeing her spinal graft made a dreadful error – and gave her 8 and a half pints of Positive blood during the operation. Bridget’s blood group was Negative. The error could have killed her, and the knock-on effect meant that the children she had subsequently might have been born with serious disabilities. Each one needed a complete change of blood at birth, and thankfully, they all survived with no damage. Bridget is very proud of her children and grandchildren!

Despite suffering from PPS, Bridget still manages to run a Luncheon Club in her village. She obtained funding for the club through a Lottery grant – which is not as easy as it sounds, and takes a tremendous amount of tenacity. With the £6,500 grant, she set up the club to provide proper home-cooked threecourse meals once a week for elderly and disabled folks, and has 8 other ladies to help with the work. She also works hard as a member of her Parish Council.

Bridget found the Lincolnshire PostPolio Network on the Internet and was soon driving with her husband Derrick to

Lincoln for the 2006 AGM. Bridget was assessed by Helen Kent from Progressive Medical in California – our main speaker – and told that she urgently needed assessment for a night time ventilator. It took some months, nothing unusual in the U.K., for her to get through the assessment procedures but she has just received her night time ventilator and will let us know how she gets on next issue.

The Driving Test

It’s a chilly, grey day – the traffic pretty heavy, but I’ve managed to get where I have to be in plenty of time. My nerves are in reasonable condition, and I’m eager to get the test over and done with. In the little script below, imagine the voices using that sing-song cheery-cheery ‘I know I mustn’t pat this poor lady on the head…’ type of voice..

Press intercom buzzer to announce arrival for 9.30 appointment. ‘Please wait, someone will be along to collect you in a moment.’

‘So sorry to keep you waiting – please follow me.’

‘Let’s make sure your vehicle is roadworthy. Hmm. We don’t need lights, do we? No. Oh yes, nearly forgot – we do need to reprogram you. Just a moment, I’ll ask Richard to come along.’

(Richard arrives with bright smile, electronic pad and pointy thing like screwdriver. Fiddles around with controls on vehicle.) Beep beep be-beep. ‘There you are – all reprogrammed, so let’s go. NO – WAIT! I’ve just got to fix this thing on your undercarriage…..’ OK, now we really can begin the test.

‘Now Mrs. McCreadie up here turn left, turn right and wait at the junction … that’s right. Now we will both be with you, and the test will take about three quarters of an hour…… No hang on, not so fast please or we won’t be able to keep up……Left.. I

mean right….have you checked for traffic? Oh good. Straight over, and up that narrow lane. Yes, you go round the first barrier, and then around the second barrier and continue straight on. Cold isn’t it? That’s the only problem with these open-top models.. Yes, straight on until you reach the next intersection… Did you check for traffic? Good! Now when we reach the traffic lights up ahead, stop if they are red. Jolly good, you stopped! Keep watching the traffic… Did you press the button? Oh well done…….Now the little green man is showing so we can cross to the next traffic light…… Did you press the button? Well done – yes, there’s the little green man. Over we go… Now let’s just go into Sainsbury’s.’

By now it should be obvious that this was no ordinary driving test! No, it was a test to make sure I could handle my newly-souped up electric wheelchair in both vehicular and pedestrian traffic. If I failed, it would mean that my chair would be programmed back to the 1mph I was so keen to get away from. I’d been waiting months for Wheelchair Services to arrange this test, and didn’t really know what to expect. The basic test was simple enough – embarrassingly so – but Health and Safety Regulations demand that anyone having an electric wheelchair from the NHS is required to prove their driving abilities. The fact that I’ve been using a scooter for years, and have been driving a car for more years than I care to remember has no influence on H and S! The remainder of the test was a different matter. Apparently it is essential to prove that you can also get up and down a 4” kerb. I was taken to the requisite place – on an extremely awkward junction, where, from my somewhat low position, it was almost impossible to see any traffic. I had to start from across the road and travel as fast as I could head-on towards the kerb, and keep going until the w/chair was up on the pavement. Now this can be a bit unnerving – especially as there was a stone wall beyond the pavement. I have to admit it, I

failed the first time. Didn’t go fast enough, and ended up sort of side-ways on half way up the kerb. So I tried again and succeeded in mounting the kerb, but the jolt to the wheelchair and my system was not appreciated! Then of course, I was required to go down said kerb. This was terrifying. I couldn’t see possible traffic and I had to go down backwards into the road before being allowed to turn around. Although I managed it, I did say to my tester that I would never EVER do that in the usual course of events, and that I considered it highly dangerous. We eventually got back to the Wheelchair Services office, where I was given the glad tidings that I had passed the test. So my chair now bombs along at a reasonable 4mph, and I can take it out on the pavements legitimately.

One small thing did escape attention until I pointed it out. The kerb-climber that had been affixed to my undercarriage made it absolutely impossible for me to get out of the chair! I was told to ‘just move it into the ‘up’ position’. Oh yeah? And how do I do that? When you are sitting in the chair, it simply isn’t possible for someone with my problems to make any impression on the thing at all! I could no more push the thing into the ‘up’ position than fly, so Richard (bless his heart, it made him blush as well as me!) leant down, shot a hand right between my lower legs and forced the handle of the kerb-climber out of the way. Even so, the additional bar still makes it more difficult for me to get out of the chair, but I can manage.

So the moral of this story I suppose, is that if you want to pass your test and have the benefit of a wheelchair that goes at a sensible speed: put up with the ever-so slight-patronage with a sweet smile, do whatever they ask you to do as well as you can. Then high-tail it out of there and enjoy the freedom! mary.mccreadie@lincolnshirepostpolio.org.uk

“Handicapped” Suite and “Handicapped Person” are now living together.

I have moved from my magnificent-view condo to an independent seniors complex. In 1981-1985, my husband was chaplain at the Evergreen Baptist Home (EBH) in White Rock (near Vancouver, Canada). White Rock in yester-years used to be a beach resort town. Now it is a very busy city, lots of seniors. Now, it can take from 2-3 years to get into EBH, and because I have so many friends here and there are a lot of church meetings, I wanted to get into the home. I think I was given some preference because of my husband having been part of the staff in earlier years.

There is a section of the Home for intermediate nursing care. Attached to the building is a six-storey condo for independent living. The four corners on each floor are for married couples (one-bedroom suites); the rest of the suites are bachelor suites. However, on the first floor, the four corners are designated as “handicapped” suites where hallways, bathrooms, doorways are wider. So you can see with a two-year waiting list, with only 4 suites for handicapped, I felt I must move in while the place of my choice was available. My husband (now deceased) and I always made changes based on the following: make a change BEFORE you must, and in this way, you have control of the situation and can make choices that you would want. However, I have had polio 58 years and I am 81 years old, so the move was very hard on my muscles, etc. I had help, but when no-one was around, I move this or that, but I suffered the consequences. On my right leg, from the crotch to the knee I got a bruise 9 inches long and 5 inches wide probably a ruptured vein. It has taken weeks for the bruise to travel down my leg into my foot, making it swell and impossible to put on shoes. Things are looking up a little more now.

The EBH was built in the ’50’s, and no matter how well intentioned the architects were – they allowed some features to be incorporated that are absolutely ridiculous for seniors with disabilities. I maintain that any building enterprise should have a physically handicapped person on the committee, or else ask several able-bodied committee members to spend one or two days in a wheelchair to experience first-hand some of the hazards we encounter. I am, of course, a legally handicapped person. The other seniors in the complex are physically disabled because of age.

The first unit of EBH is for the intermediate care seniors. It is only recently that switches were installed so that the outside doors could open up for wheelchairs. Unfortunately, the entrance here as well as the entrance to the condo complex do not have a “covered” entrance, so if it is pouring rain, you can get quite wet from your car to the entrance door. And if you have a wheelchair, walker, etc. to unload as well, or one’s slow pace of walking, this is unfortunate. There are no wheelchair switches on the doorway to the condo. Unless there is someone in the foyer, I cannot open the heavy door and hold it open from a wheelchair position.

The condo and the intermediate care section have between them a dining area, several offices, a chapel, and a huge lounge area. All these features are most desirable BUT – the two major parts of the complex have two formidable slopes – a long rambling slope, plus a shorter extremely sloped runway. I CANNOT get up these slopes by myself because of the stress it places on my shoulders. So – I wait to get “pushed” up the slopes by someone who is more mobile than I am. It is no problem – but my question is: why, why, why are these slopes in buildings which house tottering, shaky seniors? Many of them really have great stress in tackling these slopes.

Down the hall from my suite is a garbage disposal room. I am unable to open the heavy door – so must rely on someone else to take my garbage away. There is a big balcony for general use – but can I get onto the platform? No. Above the concrete walkway is wooden slatted flooring – I guess so people don’t have puddles to walk through when it rains. However, I cannot get my wheelchair over the ledge to get outside. “Handicapped” people – or – “handicapped” buildings?

.And now, ladies and gentlemen – the “handicapped” suite! I have a lovely kitchen, big front room (more like an office with all my computer stuff, files, big desk, etc.), and a roomy bedroom. Let’s analyze each room. First, the kitchen. The counters are 36 inches high and one cannot reach the taps nor the stove switches from a sitting position. At least I can stand to reach but some handicapped people would not be able to. They did not leave an open space under the sink – an open space would have meant that the wheelchair could go under the sink, thus making it easier to reach the taps. The shelving above the counters was so high that even an able-bodied person had trouble reaching them. They were able to lower the shelving – but still – one has to be able to stand to reach the shelves. In one corner of the kitchen was a small open space – a storage cupboard. I was able to have them remove the doors, and I can put a small deep freeze into the area. I have a small table with folding leaves in the kitchen, so it doesn’t take much room, and I can easily push it around

the kitchen, and then into the front room if guests need it for eating. “Handicapped” people – or – “handicapped” kitchen?

The bedroom. I was able to put my sewing machine and table ironing board along the window wall. Nice light, and everything fits great. Instead of doors on the closet, there is a lovely lace curtain. What is that monstrous thing covered with a gold velvet cloth? Well, friends, here I must make a confession. I have purchased a battery-operated wheelchair so I can get up and down those miserable ramps in the building, but so far I haven’t had the time or strength to practise with it. But my two wheelchairs are okay in the bedroom – not much floor space is left, but who walks around the bedroom anyhow.

And finally, the front room. To get the wheelchair from one doorway to another requires back-up, adjust wheels an inch or so – WATCH OUT – you’re getting your fingers caught in the doorway – OUCH! The builders left just a quarter of an inch on each side for clearance. Ridiculous. One wall is the patio door area, and the doorway has to be kept clear because of fire regulations. The suites open up to a wrap-around walkway, and I am at the beginning of this walkway. On my doorway I have a sign saying “Welcome to Viola’s cosy corner of Brilliant, Beautiful, Butterflies.” Yes, butterflies have been acquired by me over the years, so I have made “butterflies” my theme: some are from Brazil, Australia, and a peacock made of butterfly feathers from Africa. One side of the room has TV, two bookcases which I use for artifacts and not books, a long glass topped coffee table with 4 fibre optic lamps on it to bring a rosy glow to the room. Against the other wall, my desk and computer equipment, plus 3 two-drawer filing cabinets and 3 sets of plastic drawers, all covered with cloth from Thailand to hide the “ugliness” of filing cabinets. There are two chairs for guests. My recliner is in a corner, and the whole room is interesting and “cute.” “Handicapped” people – or – “handicapped” living quarters?

My daughter does my shopping, takes me to medical appointments if necessary, etc. I am very blessed to be so fortunate. At the Home, I can go to the chapel to join up with the orchestra (I play Hawaiian steel guitar). I take one Sunday evening program a month. I know many people – even a gal who was in my church’s youth group in the 1940s. I miss my dear husband so much, but all things considered, I am blessed to be so well looked after in my old age. If you have any questions, don’t hesitate to write me privately.

The lovely chapel was built when my husband was chaplain. Unfortunately, because it is a link between the two buildings, it is built on a slope, and I have seen newcomers nearly take a tumble on the sloping floor. The first time I went into the new chapel, I sat on one of the padded pews. My face fell with dismay – the pews are some of the most uncomfortable I have ever sat upon. I need an air cushion to sit on when I am playing my instrument. The pews are not wide enough for our tender “seats”. My husband put a foot board across some of them so people could brace their feet on the pew ahead of them for a little more balance. There are two HIGH steps to the platform – and it took them years to put in a handrail. The handrails are terrible – the railing ends on the first step, so when you come off the last step to the auditorium floor, there is no railing support for the last step down. The chaplain stands at the bottom of the steps to provide his arm for the additional support for choir members when they come off the platform. I could go on and on – but you get the idea – able-bodied designers just didn’t get it.

Now I ask you: Are the hallways, suites, chapel “handicapped” or am I “handicapped”? Well, in spite of the builders’ endeavors, I would say that the suite definitely is “handicapped” and I hope that builders nowadays will have a little more sense when it comes to building a “handicapped” suite. And it goes without saying, I am handicapped and will continue to be thus for the rest of my life. Let’s get the word out: build wisely for handicapped people – some of the changes needed would require no extra money, just better planning and with lots of input from handicapped people things could be much more convenient.

Conclusion. Hear ye, hear ye: “Handicapped” Suite and “Handicapped” Person are now living together – for better or worse – in sickness and in health – until death do us part. As always, polios are survivors, so I think I shall survive this situation in grand style – but not without protest!

Viola Pahl, Viola Pahl <viola@PAHL.CA>

Whilst I have a computer I know many of your readers do not. If anyone would like to correspond then please write to me at the Evergreen Baptist Care Home, 1550 Oxford Street, White Rock BC V4B 3R5, Canada.

E-Mail Forum

Once again, the e-mail forum has been buzzing, and I am very pleased to report that I’ve received a number of private e-mails telling me how much the forum is appreciated. Being able to discuss problems, offer experience and advice to others, share a giggle or simply off-load one’s feelings in a safe environment, can only be beneficial. The couple of months before Christmas were particularly busy – although January has been a little quiet! I’m looking forward to hearing much more from you all very soon. Anyway, here’s the usual sample of what we’ve been talking about:

1. I went to see our local chest consultant a couple of weeks ago with a view to getting help with the cough I have especially when I have back pain and on exerting myself. His answer was that unless the cough became primary or I became suicidal (his words) then he wouldn’t refer me. I wonder what happened to caring for the people like this government said.

“One minute the government is saying we have choice and can go to other countries to get operations (oh, but that helps waiting lists) but we can’t even see a doctor in another county. Where is the choice?”

“If you already have a respiratory specialist that you see I don’t see why you should have to pay for tests privately. Surely if you saw a specialist outside your county any tests could still be done locally. Also many doctors will see someone privately and then arrange for tests on the NHS…. For that matter, with a bit of pushing you can probably see someone outside your county on the NHS if you can just show that there is no expertise in the county.”

“Seeing a specialist privately is no guarantee of success: all it does guarantee is that you will see the specialist much quicker…. I think the golden rule here is – always try to obtain a personal recommendation from someone who has seen the specialist already, although that does not always work because different people can form very different opinions about a specialist – it may even come down to how s/he was feeling on that particular day and how s/he reacted to that particular patient.” 2. I’m still at the stage of wondering whether early retirement through ill health is definitely the way I want to go.

“… if you leave it too long then you may find the decision of when to go is taken from you, and you may be in a less fit state when you do finally retire. I do think that anyone with PPS who is able to give up work should do in order to conserve what they still have and to be able to enjoy other things in life. It is a difficult decision and only you know what is right for you. I wish you all the best in your decision making.” “The decision to retire is a huge one, personally it took me 2 years of iffing and butting, until finally I reached the point when it wasn’t just me to consider. After I’d bitten the bullet, it all came together….for the first time in ages I was able to think about what I could do especially with my husband who had been doing all the housework etc to enable me to work! I thought I wouldn’t be worth as much as a person if I gave up my profession, how stupid that sounds now.”

“I can echo many of the things that have been said… I felt it was time to pack up when colleagues were ‘carrying’ me and taking work off my in-tray, and I was making too many mistakes, and dropping off to sleep at 3 pm. If you’re on top of the job – fantastic. If the job’s on top of you – disaster.”

The retirement issue then developed into a discussion about problems with Incapacity Benefit:

3. It took me 10 years to retire, then I screwed up on IB and have to appeal. Should I take someone knowledgeable with me to the tribunal, if so who? I didn’t apply on time and was given bad advice.

“We had a talk from John Gill at Lincoln CAB and I am sure he would have the answer for you on this from the excellent talk he gave us. He prepares and attends many appeals. He spoke at a Lincolnshire Neurological Alliance meeting this year.” “I think it’s best to have someone with you. These tribunals can be very unpleasant, and you need support. Try your CAB – they should be able to send a rep to come with you, and if you give them permission, will speak on your behalf. You need to do your homework first and be properly prepared, because the questions you will be asked can be very skewed.”

“I always get the CAB to help me with forms and things. I find they are very good and very helpful in may ways.”

4. The only thing I loathe is having to wear horrid lace up shoes and trousers all the time, but this is just pure vanity! The first thing I always look at in magazines are SHOES!

“I do so agree about the shoes. It’s worst on those rare dressy occasions – what wouldn’t I give to slip my toes into some delicate strappy beauties? I keep saying that if/when I start using a wheelchair all the time, my first purchase is going to be the most alluring pair of killer heels I can find!”

“At the San Francisco Conference there were about eight of us PPS support group gals all standing talking.. well some of us were leaning against the tables.. and we were all dressed to the nines. Someone suddenly laughed and said.. look down at our feet. All of us had white sports shoes on….

“Shoes! I had to wear lace up shoes, brown” Kilties”, my right shoe had to be built up one and three quarter inches until I had my graft ,when I was 14. I could have no slippers, sandals. or daps. Once I could wear “proper” shoes I for years spent every penny on shoes–,I still have some of them. 4 inch heels black, green, red, you name it I had them. Just as well really because now I’m in Jesus sandals my feet and ankles do get puffy.”

5. How different would our lives have been without polio? Better or worse? Judging by the way we all seem to be so positive (most of the time!) and so determined, and to prove we can do everything just that little bit better, it occurs to me that the very fact of having polio has changed the characters that we might have been otherwise.

“I have come to realise and life has shown me that polio was the best thing that happened to me. It allowed me to be my own person and a very strong individual. I also agree that many things do not get past polio people and to prove a point on Sunday my husband (who has MS) and myself did ice skating in our wheelchairs in an outdoor ice rink outside Windsor Castle. It was magical and there were so many spectators that wanted to see us get on (along with many other able bodied peeps), we had comments like “I would not be so brave to get on the ice”, and that I should get special ice tires for my wheelchair! It was the first time that anyone had asked

the organisers if wheelchairs could be taken onto the ice and after a little confusion we got on!!!! So there is always a way if you are willing to take the risk and enjoy life to the full!

“At least it has been and interesting and certainly not a boring life and I have met a lot of interesting people.”

“I think having had polio has contributed to my character in countless ways. Throughout my life, reports on me have usually included words such as ‘tenacity’, ‘determined’, ‘won’t be beaten’, etc., and I’m sure the same has been said of most of the folk who post messages here. I think polio has had another effect too. I think I’ve become quite accepting of the small annoyances in life that seem to wind other people up (traffic jams, waiting for hours for an appointment, etc.). Somehow, having to live life so slowly seems to put so many niggles in context. I’m usually quite happy to listen to the car radio or read magazines while waiting. Fretting and agonizing won’t change a thing, and will only make the fretter feel more het up, so I try to just ‘live in the moment’ and make the best of it.”

Quite apart from the above, we have covered many other subjects including VAT, Public Transport and holidays, as well as commiserating with each other about the weather. I’m very pleased to welcome those members who have recently joined the ranks – it is great to have you with us!

If you would like to join the e-mail list, please send an e-mail to

join-pnl@lincolnshirepostpolio.org.uk (please include your full name in the email).

Those of you who are not on the internet can write to our main address with your questions, stories, memories or concerns. Alternatively, you could call the Polio Survivor on duty (details are on 01522 888601). The more we share experience, the more we learn!

WHEEL USERS – SAFETY TIP

If you are going anywhere with your wheels where you might be alone or go off the beaten track ensure that you not only have a well charged batteried mobile phone with you but something that makes a loud noise so you can attract attention of others. Plus tell someone before you go where you are going and how long you think you are going to be away. Whilst at the Singing River Rendezvous Richard [without brace on] was killing time waiting for the moccasin traders to open up. In his wheelchair he went along the nature park tracks and all was fine until he hit a small bump and veered off into some sandy ground. Although he could hear people in camp and was only 40 yards from folks they could not hear the beep on his wheelchair. He tried banging SOS in Morse code on a tree only to be answered by a woodpecker! He got off the chair onto the ground and pushed himself backwards towards the main track into camp. The 70 foot journey took him an hour and a half. We have been given a police whistle but are also looking for a noise making machine that you can push a button in case we don’t have enough breath to blow the whistle. Any ideas? We do have walkie talkies and a mobile phone but as we were living pre 1840 we did not take them with us. There were seven sets of wheels at this Rendezvous and it has now been decided that provided usage is kept to a minimum mobiles and walkie talkies for ‘wheelies’ will be allowed. Mary McCreadie reminds me that when its cold batteries can run out early and the three of us have all been stuck like this and had to be ‘free-wheeled’ back to base, and me more than once!

How many of these did you know?

A sealed envelope – Put in the freezer for a few hours, then slide a Knife under the flap. The envelope can then be resealed. ====================

Use Empty toilet paper roll to store appliance cords. It keeps them neat and you can write on the outside of the roll. ====================

To remove old wax from a glass candle holder, put it in the freezer for a few hours. Then take the candle holder out and turn it upside down. The wax will fall out. ====================

Candles will last a lot longer if placed in the freezer for at least 3 hours prior to burning. ====================

Blood stains on clothes? Not to worry! Just pour a little hydrogen peroxide on a cloth and proceed to wipe off every drop of blood. Works every time! …..(Now, where to put the body?)

====================

Use vertical strokes when washing windows outside and horizontal for inside windows. This way you can tell which side has the streaks. Straight vinegar will get outside windows really clean. Don’t wash windows on a sunny day. They will dry too quickly and will probably streak. ====================

To clean artificial flowers, pour some salt into a paper bag and add the flowers. Shake vigorously as the salt will absorb all the dust and dirt and leave your artificial flowers looking like new! Works like a charm! ====================

Spray your TUPPERWARE with nonstick cooking spray before pouring in tomato based sauces and there won’t be any stains. ====================

Wrap celery in aluminum foil when putting in the refrigerator and it will keep for weeks. ===================

To get rid of itch from mosquito bites, try applying soap on the area and you will experience instant relief.

[Editors note – This really does work]

Use air-freshener to clean mirrors. It does a good job and better still, leaves a lovely smell to the shine. ===================

When you get a splinter, reach for the scotch tape before resorting to tweezers or a needle. Simply put the scotch tape over the splinter, and then pull it off. Scotch tape removes most splinters painlessly and easily. ===================

Now look what you can do with Alka Seltzer……..

Clean a toilet. Drop in two Alka Seltzer tablets, wait twenty minutes, brush and flush. The citric acid and effervescent action clean vitreous China.

Clean a glass vase. To remove a stain fill with water and drop in two Alka Seltzer tablets.

Polish jewelry. Drop two Alka Seltzer tablets into a glass of water and immerse the jewelry for two minutes.

Clean a thermos bottle. Fill the bottle with water, drop in four Alka Seltzer tablets, and let soak for an hour (or longer, if necessary )

Unclog a drain. Clear the sink drain by dropping three Alka Seltzer tablets down the drain followed by a cup of Heinz White Vinegar. Wait a few minutes, and then run the hot water.

Helping you with your Polio and PPS related Problems.

Apart from finding and disseminating information about Polio and PPS, LincsPPN is dedicated to helping with any problems or concerns that members come across. If we do not know the answer then we usually know someone or another organisation that might be able to help. We have listed some of the organisations that we use on the facing page. However, we do need YOU to ring or write to us and tell us what you are concerned about! I heard recently of someone who had a problem, failed to tell us what it was and then was unhappy that we had not been able to solve it. With the best will in the world, we are not telepathic and nine times out of ten you won’t be the only member with this problem.

The e-mail forum recently flagged up something that I had not previously considered. Not all of us have cars, or if we do, may not always want to use them and would prefer to use the bus. But just how easy is it to access public transport? The following post made me think: “We have just received our first disabled bus in this area and one of our ladies at the day centre was asked by Radio Cumbria what she thought of it. She went off and tried the bus. Her experience was to say the least terrifying. To start with it was a ramp that the driver had to put out for her friend to push her onto the bus. Then the allotted space for the wheelchair was very tight and hard to manoeuvre in. So with difficulty her friend managed to get her into the space. On the journey she had to hang on for dear life as there was no way of clamping the wheels down. Every time the bus stopped or set off the wheelchair tipped, and when the bus went down hill it slid forward. Needless to say she has given her report to Radio Cumbria and also wrote to Stagecoach. The lady in question is my friend who has PPS and she like the rest of us likes to make her point very strongly.”

Getting your wheelchair into a cramped space, and then finding yourself sliding around at the whim of the bus movement does not sound healthy to me! I decided to look into the situation myself. After speaking with the Disability Rights Commission and looking at several web-sites on the matter, I spoke with the Operations Director of Stagecoach (West) and told him of my concerns. He was extremely interested and helpful, and has offered me and my wheelchair the opportunity of a test-run in one of their buses – which I will definitely take up. Assuming I remain in one piece, I’ll report back! He told me that the law requires that wheelchairs are restrained in mini-buses and the like, when the passenger is facing forwards. In larger buses, the arrangement is that the person in a wheelchair faces to the rear of the vehicle, and the w/chair is backed up to a special board. Thus the chair cannot go shooting forward if the driver has to brake suddenly. Interestingly, nobody seems to have thought that when standing on a smooth or carpeted floor, a w/chair with the brakes full on will still slide. Restraints are not considered an option because a) they are deemed unnecessary, b) it would take too long for the driver to apply them, c) the passenger needs to be able to do things by him/herself in the interests of equality and d) they don’t want the driver getting out of his seat as that might mean that his ticket money and the bus are ‘at risk. I now have a copy of Stagecoach’s leaflet on their responsibilities to disabled people, and their progress towards getting the whole fleet up to Disability Equality Duty standards. I will comment further once I’ve seen the information and tried the bus for myself. Wish me luck!

Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk

[Editors Note – We stay overnight at the Gatwick Airport Travelodge and use the Hoppa Bus. They fold the ramp out and Richard goes in first in his electric chair and there is room for him to turn by the wheelchair space—get in the space, but getting out is another matter. I walk by my scooter and take it in backwards having to hootch it round a bit physically and stay in the aisle. I doubt together we could ever travel on a bus. Riding the Greyhound in the USA was an experience facing forward and hanging on to the seat in front]

BRITISH COUNCIL OF DISABLED

PEOPLE

UK’s national organisation of the worldwide DPA, setup by Disabled people to promote equality in UK society.

Phone: 01332 295551

Web: www.bcodp.org.uk BRITISH POLIO FELLOWSHIP

We provide a wide range of information and advice on your rights, housing issues, equipment, Self-Management courses, the late effects of polio/post polio syndrome etc. The list is extensive and you will find a great deal of information here on the website. If you can’t find the information you’re looking for, please contact our helpful office team

Eagle Office Centre, The Runway, South Ruislip, Middlesex. HA4 6SE Freephone: 0800 0180586

Web: www.britishpolio.org.uk

E-Mail: info@britishpolio.org.uk

DIAL UK

DIAL groups give advice on all aspects of disability and are run and staffed by people with direct experience of disability.

Phone: 01302 310 123

Web: www.dialuk.org.uk DISABILITY ALLIANCE RIGHTS ADVICE LINE

Telephone advice on benefits for people with disabilities. Publish Disability Rights Handbook among other titles.

Phone: 020 7247 8763

Web: www.disabilityalliance.org DISABILITY LAW SERVICE

Provides free confidential legal advice to disabled people, their families, carers and enablers. Service is made up of solicitors, advisors, trained volunteers providing informed legal advice.

Phone: 020 7791 9800

DISABLED LIVING FOUNDATION

Leading source of information on disability equipment, day-to-day household gadgets, new technologies and training techniques.

Phone: 0845 130 9177

Web: www.dlf.org.uk DISABILITY RIGHTS COMMISSION HELPLINE

Provides information and advice to disabled people and employers and service providers about their rights.

Phone: 08457 622 633

Textphone: 08457 622 644

Web: www.drc-gb.org HOLIDAY CARE

Providing holiday and travel information for disabled people and their carers; funding, accessible hotels and respite care.

Phone: 0845 124 9971

Web: www.holidaycare.org.uk MAKING CONTACT.ORG

A service of Contact a Family, Making Contact.org is a place where families of disabled children or adults, their friends or disabled adults themselves can find and contact others affected by similar disabilities or other local disabled people.

Web: www.makingcontact.org

MAVIS (MOBILITY ADVICE AND VEHICLE INFORMATION SERVICE)

Driving ability assessment including advice on car adaptations and the opportunity to test drive a range of vehicles.

Free information service.

Phone: 01344 66100

Web: www.dft.gov.uk This is just a small selection of phone numbers and web-sites that just might be helpful to some people. If anyone has found a particularly useful/helpful organisation that you think might benefit other members, do please let us know.

OTHER ORGANISATIONS THAT MAY ALSO HELP YOU

June’s Iron Lung Guinness World Record

Following an application by the Polio Advisory Committee of Polio Network Victoria, Mr. Peter Turner, CEO of ParaQuad Victoria today joined with team members of AFL’s Carlton Football Club to present a very proud June Middleton her Guinness World Record certificate. The wording on the Certificate reads:

“June Middleton of Melbourne, Victoria, Australia, has relied on an iron lung to keep her alive since contracting polio in April 1949. Ms June Middleton, (b.4 May 1926) spends approximately 16 hours each day on the negative pressure respirator and has done so to date for over 57 years.”

June Middleton in 1949/1950 and in 2007 in her iron lung at the

Austin Hospital’s Bowen Centre

Mr. Peter Turner, CEO of ParaQuad Victoria and Mary-ann Liethof [Polio Community Officer] photographed with June Middleton.

Also present at the Ceremony were Carlton Football Club members. Captain, Anthony Koutoufides. assisted in the presentation of the Certificate and said ‘June has been a wonderful supporter of Carlton Football Club for a long time; she has built some very strong friendships.” In fact, June keeps a poster of the team on the inside lid of her iron lung stating that she “sleeps with the whole Carlton Football Club team every night.”

Ms. Middleton, 80, contracted polio in 1949 at the age of 23, and now spends 16 hours a day at Austin Hospital’s Bowen Centre inside the machine which helps her breathe. “I suppose it is amazing when you consider the doctors told my parents I wouldn’t last 24 hours, and I’m still here 57 years later,” Ms. Middleton said.

http://www.polionetworkvic.asn.au/newsevents/items/2007/02/136192-upload- 00001.pdf

This article was sent to us by Dennis Lloyd – ddlloyd@aapt.net.au M. Liethof – polio@paraquad.asn.au

Linc Pin Volume 5 Issue 12 Read More »

Linc Pin Volume 5 Issue 11

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 11 — December 2006

WebSite – http://www.lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

Hamish,

our youngest member aged 9, moving ‘without’ and ‘with his bits’

AGM

September 9th 2006

Back Row, Robin Butler, Middle Row, Denise Carlyle, Speaker Helen Kent,

Sheila Dunnett,

Ros Sinclair, Pauline Butler, Front Row, Hilary Boone,

Mary Kinane, Barbara Taverner and Silkie

CONTENTS

Page 2 – Contents and Contact Information. Page 3 – Editorial by Hilary Boone

Pages 4 and 5 – Chairs Piece by Mary Kinane Page 6 to 11 – Hamish’s story by Hamish and David.

Page 12 to 22 – Three Press Releases from 21st to 26th August 2006.

includes Page 18 – 21

Examining a Controversial PPS Publication by M. Falconer and E. Bollenbach. Page 23 – How I cook the Turkey, A Thanksgiving Story by Mavis Matheson. Page 24 – It’s happening every day.

Page 25 – The Post Polio Experience, info on new book. Page 26 to 27 – What’s been happening on the email Forum Page 28 – First meeting of South West Members.

A Big Thank You for the Donations received from:-

Bob Price, Jim & Jenny Rayner, Sylvia Fortune, Hilary Davies, B Bradley, A B Brown, Vivienne Holland, Yvonne Webb, Ann Telford, Deborah Jackson,

Ros Sinclair, Kathleen Burrell, M Edmonds, Peterborough ME/CFS group, J I McGowan, The Brennands, Pamela Minnitt, Winifred Hyam, John De’Ath and the Operations Team and Committee.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – March 2007

Articles for publication 5th February by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Secretary– Hilary Boone – hilary.boone@lincolshirepostpolio.org.uk Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Committee Member – Di Newman – di.newman@lincolshirepostpolio.org.uk

Committee/Email List Facilitator – M. McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk Operations Team

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk Phone Team – Di Brennand (Leader), Pat Hollingworth, Margaret Edmonds, Judy Barter Administrative Support – Sheila Dunnett, Barry & Olivia Branston

Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Copyright of material published in the LincPIN is retained by The Lincolnshire Post-Polio Network and/or the original author’s). Reproduction and redistribution of any material via any media requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author’s). Where permission is given, original material must include a credit to the LincPIN; material from other sources should credit the original publication.

Editorial by Hilary Boone.

Yesterday, 31st October we were out in T shirts and it felt really warm and was 18C [65F]. Today is November 1st and it’s a lovely sunny day with not a cloud in the sky but it’s only 9C [48F] today and we have put the central heating on during the day for the first time this year.

This newsletter is again full of information on Post Polio issues. Mary Kinane, Chair, reports on our Annual General Meeting and other meetings she has attended. Next, our youngest member, Hamish aged 9 today, ‘Happy Birthday Hamish’, tells his story. If any reader has any idea how to help this delightful young man achieve his dreams then please get in touch.

Page 12 is where you need to take a deep breath and relax your shoulders before reading although we can tell you now that whilst this seemed disastrous at first it has certainly brought PPS into the headlines and the outcome is looking more promising. The lead author Dr. Eric Sorenson has responded that ‘we do have valid criticisms’ regarding the 15 year Mayo Study and we now await his response to 22 specific questions. Unfortunately he has responded that he does not have time to

answer the questions. We will not be leaving it there and will report what happens in the next newsletter. A big thank you to members Marcia Falconer, Eddie Bollenbach, Ruth Bridgens, Mary Westbrook and to Mavis Matheson for sharing their responses to the Study. Mavis, who I met at a PPS Conference in Toronto, shares with us her latest after dinner speech on page 23. Mary McCreadie reports on some of the subjects discussed on our members email list.

We have received notification of two PPS conferences in 2007, I will be in Florida so have booked for the Miami conference and member Jann Hartman has confirmed she is attending and going on the Cruise. If you are going to attend either Conference then do let us know. N.B. Unless money is donated to the LincsPPN towards Conference attendance we pay our own costs.

March 29th to 31st 2007 – Como, Italy by the Associazione Nazionale Polio e Sindrome Postpolio. Sessions will be conducted by physicians dealing with polio and post polio. Also on March 31st The European Polio Association will meet to discuss various proposals that the group can undertake at local and national level. See www.postpolio.it

April 9th to 11th 2007 – Miami Florida by the Post Polio Association of South Florida & The International Post Polio Support Organisation ‘Partnering for a Better Tomorrow’ at the Radisson Hotel, Miami Downtown. The Boca Raton PPS Group have organised a 7 day Caribbean Cruise to follow the Conference. Details of the Conference and Cruise can be found at http://www.post-polio.org/PPConfApr9-11.pdf

Margaret E Backman PhD sent information on her new book, The Post-Polio Experience, I bought a downloadable version for $6 and I found it very informative. We need to ensure we allow our family and friends to tell us how they feel about the way PPS has changed our/their expectations. Viola Pahl in Canada, who long time readers of the LincPIN will remember, has moved to a residential home and whilst downsizing decided to donate some copies of her books to the LincsPPN. Viola thank you so much, and we look forward to printing some of your story of your new home in the next issue. Not only is it informative but makes you smile as well.

Also in the next issue – member Robin Brierley shares with us his inspiring fictional based on fact story of a child getting polio. Remember when visiting your past, which can also be triggered by smells, pictures and reading about someone else, it can make you very emotional, often totally unexpected. You are not alone in this and whilst ‘opening the box on the past’ is tough the majority will tell you that it has helped them move on. Send us your stories and/or photos.

STOP PRESS. Congratulations to Phone Team Member Pat Hollingworth on her engagement to Terry Bevington on 4th November.

It has been a busy period for Committee Members. Our AGM was held in Lincoln on September 9th with 33 attending. Unfortunately the caretaker who was to have opened up the Memorial Hall for us could not be found and I would like thank Sheila Dunnett and Barbara Taverner for sorting out a nearby venue in a very short time. The Trustees of the venue have apologised, refunded our money, and offered us free use of the premises next year, should we so wish.

Voted in were myself, Mary Kinane (Chair), Denise Carlyle (Treasurer), Hilary Boone (Secretary), Diane Newman and Mary McCreadie as Committee Members. Thanks went to all our Operations Team volunteers for all their hard work this year. We do not have any paid staff – all the work is done on a voluntary basis. Member Ros Sinclair, also a British Polio Fellowship Trustee gave us a short update on their work and how greater co-operation was planned between our two organisations. We feel that this is a welcome development, especially for our UK members. It was decided to hold next year’s AGM in early September; the date will be published in the next newsletter.

Member Dr Sally Sennitt, the Medical Director of Kingfisher Healthcare, a medical devices company based in Belgium, was our first speaker. She came to introduce herself, the company and the work they are doing with microcurrent in the treatment of fatigue in chronic illnesses and in particular PPS. They are producing hand held devices that deliver microcurrent, (very low electric currents) a fascinating and promising technology which has until now, never been fully developed for use in specific diseases or symptoms.

The philosophy of Kingfisher Healthcare is to develop products optimised for a particular use (e.g. fatigue, wound healing) that have been proven in clinical studies; assisting individuals to manage their own conditions safely and effectively.

Unlike TENS, microcurrent does not trigger any nerve activity and cannot contribute to muscle overuse. The devices support physiological processes at cellular level, amongst others by stimulating the body’s own cells to produce more ATP, the energy source for all cell processes. This allows the cells to carry out their normal processes faster and more effectively hence more energy, faster healing and recovery etc.

A study in a group of PPS patients in Belgium, the Netherlands and the USA, has shown very promising results with a statistically significant increase in stamina of 43% and a 36% reduction in fatigue over a period of 3 months. Dr Sennitt presented the results and after a searching and informative question session asked for volunteers to join the UK branch of the study. Many of you did and we will let you know the results in due course. Dr Sennitt’s medical background is in anaesthesiology, a welcome addition to our knowledge base.

We then had a lovely buffet lunch and time to chat. Our Main speaker for the afternoon was Helen Kent, BS, RRT and owner of Progressive Medical in California. Helen told us that patients with neuromuscular conditions need to have some simple respiratory tests included as part of their yearly assessment. This will give an early indication of possible respiratory issues and results should be reviewed on a regular basis.

Helen tested 21 of our members during the day. The tests consisted of Maximum Inspiratory Pressure (MIP or PiMax) Maximum Expiratory Pressure and Forced Vital Capacity. Helen advised all those with MIP’s lower than -60cm H2O to ask their General Practitioners to refer them to a Respiratory Consultant for further testing.

[Two quotes from “Hypoventilation? Obstructive Sleep Apnoea? Different Tests, Different Treatment” by Judith R Fischer, MSLS, Editor Ventilator-Assisted Living – see full article in LincPIN Newsletter, March 2006. ‘Hypoventilation. Generally, in people with neuromuscular disorders who are having breathing problems, the main problem is hypoventilation (under ventilation) – not breathing deeply and/or often enough. Muscle weakness, scoliosis and/or chest wall stiffness make it difficult or impossible to fully inflate the lungs.’ AND ‘A result of <50% predicted FVC or a MIP <60cm H2O may signal that it’s time to get some assistance with breathing.’] The results were 4 at -50, 6 at -40, 1 at -35, 1 at -30, 5 at -25, 1 at -20, 1 at -15 and 2 at -10, all cm H2O. All 21 were lower than –60cm H2O [note that where a negative scale is used for MIP, e.g. -60 instead of 60, -50 is lower than -60 and -10 is lower than -50]. The San Francisco PPS Group Testing results were 22 of 25 had MIP’s lower than –60cm H2O. Two of our members attending were already using Bi-level Night Time Ventilation and they and their partners confirmed that all four lives were greatly improved by this.

I would like thank Member John DeAth who arranged a dinner in Jesus College for the Kents and Boones to meet Professor John Stradling, Consultant in Respiratory Medicine at Oxford. They report ‘A wonderful meal in awesome surroundings with very lively conversation regarding PPS and respiratory issues.’ A big THANK YOU to Helen and her husband who re-scheduled their holiday itinerary to spend a few days in England, so that she could speak at our AGM and do the respiratory tests for members. We were very pleased to welcome Graham Ball (Chief Executive) and Mike Egan (Trustee) of the British Polio Fellowship (BPF) who joined us in the afternoon. Denise, Hilary, Richard and myself, all BPF members, attended their AGM two weeks later in Walsall.

As a further step towards our collaboration with the BPF, I attended the inaugural meeting of the BPF’s Expert Panel in London in October. Two other members, Dr. Ros Sinclair and Dr. Ruth Bridgens are polio survivors and BPF and LincsPPN members. There are other specialists in research, rehabilitation, neurology and respiratory medicine. In preparation for the next meeting in January, each member will be putting forward what they consider to be important issues which need addressing. The opening remarks by the Panel’s Chair – Bert Massie CBE – that we were there ‘to make a difference’ to polio survivors will, I hope, continue to guide us

Denise Carlyle and I were invited to give a presentation on self-assessment at the Scottish Post Polio Network’s AGM near Glasgow, also in October, so it has been a very busy month. Our presentation was well received (this was based on the material developed by Hilary Boone and ourselves for the PHI Conference at St Louis, MO in 2005); afterwards we had quite a few requests for copies of the self-assessment forms which we ran out of on the day! Other speakers included a very accessible session by Billy Cassidy, qualified Self-Management Tutor: “Managing Life with Post Polio Syndrome” and a talk by Dr Christopher Roy, Consultant in Rehabilitation Medicine, Southern General Hospital, Glasgow. Both Billy and Dr Roy live with a disability themselves and I thought that their approaches were both informative and down to earth. We hope to have more on these in the next issue.

On behalf of the Committee I wish you all a safe, warm and peaceful winter.

Best wishes, Mary Kinane, Chairperson. mary.kinane@lincolnshirepostpolio.org.uk

Our youngest member says: I’m Hamish, I am 9 years old and ….

I had polio at 9 weeks old from my vaccine. I have to be in a wheelchair nearly all the time.

In my walker I have to wear my spinal jacket and legs splints. Mummy puts me in my walker lying down on the floor, she then lifts me up, to standing. I move my hips forward and backwards and side to side to move the footplates so I can walk. I also move my arms. I like to stand up, it also gives me a good stretch, but if I’m in for more than an hour my legs really hurt and its painful when I come out and bend my legs. I think I will need a new swivel walker soon as I’m growing taller.

I love swimming as I’m free as I don’t wear my bits [See photo front page]. I would love a swimming pool at home to swim in every day. I went to Florida by myself with 7 other disabled children, it was fantastic. I want to go again.

I go to Shirwell School and I have lots of friends. I have one sister, Christina and two brothers, Michael and Joshua and a dog called Phloxy.

I just wish I could walk. That’s all I can say. Hamish

Note from Dad:- [picture on front page]

The swivel walker was designed by the same person who designed the Spitfire in WWII. He designed it to help injured pilots and the concept is that the footplates are angled just like an airplane wings. As weight is transferred to one footplate the other lifts off the floor and can be swung forward by twisting the body or hips. Transferring body weight to the opposite side enables the other footplate to be moved forward. There is a spring loaded strut connecting the front of the two footplates keeping them parallel for stability. This works very well but only on flat firm surfaces. Hamish’s Story. [Editors note:- all information is in the public domain]

Hamish was born on 1 November 1997 in Barnstaple, North Devon. His family had moved to England from Johannesburg in South Africa just 4 months earlier. Hamish’s Granny lived in Croyde which is a seaside village 8 miles from Barnstaple and when his parents decided to move back to the UK Granny’s house became home for a while.

At the time of his birth Hamish’s siblings were Christina aged 7, Michael aged 5 and Joshua aged just 18 month old. All was well and six weeks after his birth the family moved into a small house they had managed to buy in Braunton.

At about 4 weeks old Jacqui, Hamish’s Mum, noticed a pimple like spot form on one buttock right next to his anus. This became hard and was obviously tender to the touch. After a couple of weeks it formed a head and then while changing him one day the head came off and the spot appeared to clear away. At the same time another spot appeared on the opposite buttock but this one seemed to get bigger and more tender.

Just before Hamish was 8 weeks old this spot had become so large that it was more like a lump and was obviously becoming very uncomfortable. This was so much so that on the Sunday before he was due his 8 week vaccinations Jacqui called the emergency doctor to seek advice.

Have you ever tried to explain to an emergency Doctor on a cold winters Sunday

morning that your 8 week old baby has a spot on his bottom and that he is very uncomfortable and that you think there is something wrong without sounding like a paranoid mother who is wasting the Doctor’s time? The end result was that it was agreed that as Hamish was due his vaccinations in the morning as he would be going to the Health Centre it would be best for this to be addressed there. The next day was 28 December and as a result the whole family were together due to the holidays. David, Hamish’s father, as well as Jacqui and all the children took Hamish to the Health Visitor at the Health Centre where he was weighed and measured. The Health Visitor, when told about the lump, wanted a Doctor to examine it. She went off to call the duty Doctor, Dr Grey, and returned looking sheepish with a prescription for a local topical antibiotic cream. Jacqui was told to apply the cream and if there was not improvement in a couple of days then to come back.

Both David and Jacqui asked if they should still take Hamish to the Nurse for his vaccinations. The health visitor indicated that this would be fine.

When the family took Hamish in to see Nurse Dalimore she asked if Hamish had any problems. She was told about the lump on his bottom and shown the prescription that had just been given. Nurse Dalimore immediately decided to examine him. When she saw the lump she insisted that a Doctor come and examine Hamish. Off she went and then came back saying that Dr Grey was unavailable and that Dr Bradford would come as soon as he was finished with his current patient.

The whole family waited in the surgery until Dr Bradford came through. He looked at the lump, decided to squeeze it and take a swab for analysis and prescribed an oral antibiotic. He said that if there was no improvement in the next two to three days Hamish should be brought back.

David then asked if it would be safe to proceed with the vaccinations. Dr Bradford replied in a dismissive tone that the lump was at one end that the vaccinations were at the other and therefore there was no problem going ahead. With that he left the room and Nurse Dalimore proceeded with the vaccinations. As she gave Hamish the Oral Polio Vaccine she reminded his parents to wash their hands after changing his nappy as the polio vaccine was live and was passed through the bowels for a couple of weeks after vaccination. With that the family left and went home. Both David and Jacqui commented in the car afterwards to each other about the strange expression Dr Bradford had used regarding one end and the other. By Wednesday evening the lump had increased in size and was more uncomfortable than ever. Most of Wednesday night Hamish cried and could not sleep.

The next morning, being New Years day 1998 this lump was big red swollen and looked really angry. Jacqui once again called the emergency Doctor who this time told her to bring Hamish straight in to the clinic. She examined Hamish and sent Jacqui, David and Hamish directly to the children’s ward at the local hospital. There Hamish was examined by the surgeon on duty who contacted the consultant surgeon and then advised that the perianal abscess needed to be lanced and drained under a general anaesthetic immediately as there was a serious risk of septicaemia.

This was done and after the procedure had been carried out there was a hole ½ inch wide by ½ inch long and ¼ inch deep. Bearing in mind that Hamish was only 22 ½ inches long this was quite a crater. It was very difficult to dress the wound and over the next few days each time Hamish had a bowel movement the wound was filled the faeces.

Over the next few days Hamish responded well and seemed to be more comfortable but by the Thursday, being a week after surgery, he developed a high temperature and was extremely irritable. On the Friday morning Jacqui took him back to the Doctors and Dr Pearce told her to take him straight to the Hospital as he suspected Meningitis.

Hamish was admitted on the Friday and by that evening he was diagnosed with Meningitis. On Saturday he began to develop twitching movements but on Saturday night he seemed to sleep right through the night. On Sunday morning Jacqui told the Nurse that he had slept through and was still asleep. The Nurse examined Hamish and discovered that he was unconscious. He remained in this state for a few days and was totally floppy. The only way you could lift him was on a pillow. Hamish was then diagnosed with encephalitis which it was thought was causing the state of semi consciousness.

Fortunately the paediatrician who was caring for Hamish left no option unexplored and after a week of tests and debates with the virologist Dr Bosley diagnosed Vaccine Associated Paralytic Poliomyelitis. (VAPP).

Hamish spent the next month in hospital and when he was discharged he had to be carried home on a pillow. He had lost all movement, his voice and had a very weak sucking ability.

Very slowly over the next few weeks little movements appeared to return. First his hips could be felt moving slightly and then his right fingers began to move. What was surprising was that improvements were noticed and continued to appear for the next three years.

Hamish is now nearly 9 years old and due to the vast quantity of live polio virus that went into his system through the wound site, bypassing any normal body defence mechanisms, he remains severely physically disabled. His legs are true polio legs and his shoulders are very weak. His upper arms are severely affected and his left hand does not function. He has a double scoliosis with the lower curve last measured at 68 Degrees.

Despite all this Hamish is a true polio survivor. He is charming, bright, determined and a real joy to know. He is fast becoming a whiz on a computer as Hilary has learnt from experience.

Hamish’s parents were told by a number of medical professionals that Hamish should never have been vaccinated at the time. It was negligent of Dr Bradford to proceed with the vaccination when Hamish was unwell and that this needed to be taken further.

On this advice the case was referred to a specialist London Clinical negligence firm of Solicitors. The solicitors were first contacted in 1998 and six years later, having explored all aspects of the circumstances of the vaccination, the case was heard in the high court in London. During the trial it came to light that Dr Bradford had not taken any notes of the consultation and that he and Nurse Dalimore had concocted

a story that Jacqui and David were concerned about Hamish’s hips at the time of the vaccination and that the lump was not an issue. Furthermore Dr Bradford had diagnosed a reoccurring perianal abscess but never told Hamish’s parent of this diagnosis or that he had never seen this before in his life but he accepted the only treatment of a perianal abscess was lancing and draining under general anaesthetic.

Dr Bradford did not mention that there was a risk that Hamish would require surgery within the next few days. His argument for not disclosing this was because he thought Hamish may not be brought back for his vaccinations if he was not vaccinated that day.

Dr Bradford relied very heavily on the government advice given in the guide to vaccinations commonly know as the Green Book. This book states that surgery is not a contra indication to vaccination with the oral polio virus. This advice is in direct contrast to the advice given out during the wild polio epidemics in the 40’s to 60’s when doctors were advised to postpone all tonsil and adenoid operations when wild polio was around. This is also in direct contrast to the published Strebel study proving what is known as provocation polio.

After a 5 day hearing in the high court the Judge ruled in Hamish’s favour and he had won. Whilst damages had not been discussed it was reported that due to the extreme nature of his polio Hamish would be due to receive damages of around £5,000,000 in order to provide the right level of care he would need for the rest of his life.

Whilst Dr Bradford was being sued he was protected by the Medical Protection Society (MPS) who defended his side of the case. This meant that Dr Bradford would not be affected financially should he lose and even though he was found to have provided a level of care below that of a competent medical practitioner he personally would not be affected at all.

The MPS appealed the decision of the judge. The appeal was allowed and a year later there was a hearing in the Court of Appeal in London before three Appeal Court Judges. This process was most disappointing as of the two days allocated the MPS were allowed total free rain for the first day to present a picture which was totally out of kilter with reality. Unsurprisingly the appeal was won on the grounds of forseeablity in that Dr Bradford could not have foreseen Hamish contracting polio. The Appeal Court judgement stated that: The maximum any competent GP could have foreseen was that if Hamish had an adverse reaction to the vaccination he would have a greater degree of discomfort as a result of possible surgery and not that of contracting VAPP.

So after 8 years of David and Jacqui having to relive, over and over again, the tragic day that they watched Hamish be crippled because they accepted the doctors answer to their questioning him being vaccinated that day, it came down to this. When Hamish was vaccinated the virus used was live and as it is excreted for a few weeks advice must be given. The nurse cautioned us ‘to wash our hands after nappy changing as polio can be caught from the excreted virus’. However, the judges deemed the GP could not forsee that Hamish might contract polio when he most likely will need to have his perianal abscess lanced within a few days which will be flooded with live polio virus every bowel movement.

The other great lesson being learnt is that all the knowledge and experience gained over the past 60 years for the treatment and rehabilitation of polio victims has been thrown out as “polio does not occur anymore”. Compared to all the reports read on intense physiotherapy and hard work done in the ’50 and ’60 Hamish’s rehabilitation has been left to his Mum to do because the medical professionals “Don’t know what we can do as polio is untreatable”.

David and Jacqui will now spend the rest of their lives paying for Hamish’s care because they allowed Hamish to be vaccinated that day believing that a doctor and the Department of Health won’t get it wrong.

David Thompson <dlt42@btinternet.com>

Editors Notes:-

1. On the 10th August 2004, The Chief Medical Office, the Chief Nursing Officer and the Chief Pharmaceutical Officer issued the New Vaccinations for the Childhood Immunisation Programme. Paragraph 2. ‘The risk of polio infection being brought into the UK is now very low. This is because polio has been eliminated from large parts of the world due to the success of the global vaccination programme. JCV1 has recommended that a switch can be made from live oral polio vaccine (OPV), which provides good individual and community protection, to inactivated polio vaccine (IPV), which provides effective individual protection. Also, IPV does not carry any risk of causing vaccine associated paralytic polio, that occurred very rarely with OPV.’

2. Quotes from the current Green Book, a publicly available document on

immunisations against infections disease. Poliomyelitis. The disease…

A. The virus replicates in the gut and has a high affinity for nervous tissue.

Spread occurs by way of the bloodstream to susceptible tissues or by

way of retrograde axonal transport to the central nervous system

B. Transmission is through contact with the faeces or pharyngeal secretions of an infected person. The incubation period ranges from three to 21 days. Polio virus replicates for longer periods and it can be excreted for three to six weeks in faeces and two weeks in saliva. (Gelfand et al, 1957). Cases are most infectious immediately before, and one to two weeks after, onset of paralytic disease. (Sutter et al, 2004)….

C. Routine immunisation with inactivated poliomyelitis vaccine (IPV—Salk) was introduced in 1956. This was replaced by live attenuated oral vaccine (OPV – Sabin) in 1962… Following the introduction of polio immunisation, cases fell rapidly to very low levels. The last outbreak of indigenous poliomyelitis was in the late 1970’s. The last case of natural polio infection acquired in the UK was in 1984. Between 1985 and 2002, a total of 41 cases of paralytic polio have been reported in the UK. (Figure 4.2) Thirty cases were vaccine-associated paralytic polio (VAPP); six cases had wild virus infection acquired overseas; and a further five cases, all occurring before 1993, the source of infection was unknown but wild virus was not detected. (From the chart in 1997 there were two cases of polio recorded, one for vaccine recipient and one for vaccine contact.)

D. Precautions. Minor illnesses without fever or systemic upset are not valid reasons to postpone immunisation. If an individual is acutely unwell, immunisation may be postponed until they have fully recovered. This is to avoid wrongly attributing any new symptoms or the progression of symptoms to the vaccine.

http://80.168.38.66/files/gbpolio.pdf

Under Information for Travellers.

A. Contraindications specific to OPV[1] Current GI upset.

B. Adverse events. OPV[1] Paralysis temporally associated with vaccination,

termed Vaccine Associated Paralytic Poliomyelitis (VAPP) has been

reported rarely in vaccine recipients or contacts of vaccine recipients.

The risk of VAPP is higher after the first dose of OPV than after the

subsequent doses, ranging from 1 case per 1.4 million to 1 case per

2.4 million first doses administered.

http://www.nathnac.org/travel/factsheets/poliovaccine.htm

Hilary Boone asks readers… Do you think the judgement was correct?

I first met Hamish when he was about two years old. I have seen him grow up to be a strong willed, determined, very intelligent young man with a wicked sense of humour. At five years of age he mastered the track mouse on my laptop, something he had not seen before, and in about two minutes was looking through the photos on my computer. A swimming pool fund has been started with a generous donation from David’s firm. Any suggestions as to how we can help enable him to enjoy movement ‘without his bits’ would be welcome.

Tricks that we use to achieve actions by Mary McCreadie.

There’s no doubt about it, things can get complicated when you have PPS – especially when bits of you don’t work as well as they should. Hilary and I were talking today, free video phone via Skype on our computers, about how we carry things – like a carrier bag with a little bit of shopping in it. Simple, you say. Just pick it up and walk off with it.

Yes, but I only have my fairly feeble left arm to use, as the right one is busy with my elbow-crutch. If I try and carry a bag as one normally would, my grip gives way and the bag hits the deck….. and I stand there like a lemon, watching my tomatoes (or whatever) roll down the road! My strategy is to get my hand and forearm right through the handles of the bag, and then grab the collar of my coat, locking my arm into position. That way, I can usually manage to at least get the shopping into the house before disaster strikes.

Hilary, who is also using stronger right arm for cane or arm crutch, has a different approach. She also puts here arm right through the handles of the carrier, but she then hooks her thumb into the waistband of her trousers, and hopes to goodness that the elastic is strong enough to counterbalance the weight of the shopping! Ah well, each to their own….. But why not write and tell us all more about your lives and the tricks and ways you have devised to do actions.

What works for one might just be the tip that someone else needs.

Three Press Releases from 21st to 26th August 2006

Relating to a medical article from the Mayo Clinic, Rochester, MN, U.S.A.

‘Survivors of childhood polio do well decades later as they age’ [21.10.2006 – [a] ‘Polio Survivors faring well’ [24.10.2006 – [b]

‘‘No polio effects’ in later life’ [26.10.2006 – [c]

The initial statement [a], on the 21st August 2006, was the announcement by the Newsbureau of the Mayo Clinic in Rochester, Minnesota, of the research findings reported in an article in the Journal of the Peripheral Nervous System, ‘Electrophysiological findings in a cohort of old polio survivors’ by Eric J. Sorenson, Jasper R. Daube, and Anthony J. Windebank.[1] This was taken up by other journalists and reported by HealthDay on 24th August [b] and then BBC NewsHealth on 26th August. [c]

Here is a quoted response from Dr. Sorenson from each of the Press Releases:-

a. “Other researchers have suggested that polio is a more aggressive condition

later in life, but we’ve actually found it to be relatively benign,” says Eric

Sorenson, M.D., Mayo Clinic neurologist and lead study researcher. “Our results

suggest that polio survivors may not age any differently than those in the normal

population — they’re not doing too badly compared to their peers. This tells us

that the cause for the decline in muscle strength in polio survivors may be aging

alone.”

b. He added that the findings should be comforting to people worried about poliorelated decline later in life. “Though the likelihood is high that patients who have

had childhood polio will complain of weakness later in life, they can expect years

of stability without the need for major lifestyle modifications.”

c. “Our results suggest that polio survivors may not age any differently than those

in the normal population – they’re not doing too badly compared to their peers.”

He added that the findings should be comforting to people worried about poliorelated decline later in life.

BBC NewsHealth [c] made some modifications to their initial press release following an email from one of our members daughters. The email and response follow.

Dear Mr Herrmann,

In response to the “‘No Polio effects’ in later life” article (26 August 2006, http:// news.bbc.co.uk/1/hi/health/4799725.stm,), I would like to say that after contracting and recovering from polio, my mother lead a full life, with little disability, the referred to ‘period of stability’. Thirty years down the line she began to experience progressive muscle weakness and pain in her forties, and was in an electric wheelchair by her fifties.

I do not call this ‘normal ageing’ or ‘not doing too badly compared to her peers’ – her peers are playing sports, going on holidays, working full-time and doing housework or gardening. My mother has had to give up all these things, and much more, including her art. She lacks the muscle strength and stamina throughout her body, she experiences muscle pain in her arms and shoulders, and even her breathing is affected through weakness of the diaphragm and intercostal muscles.

My mother’s experiences are not unique – She is in contact with many other people across the world who had polio earlier in life and are now experiencing disability greatly out of proportion to their age, and the severity of their initial acute poliomyelitis viral infection. The Post-Polio Syndrome (PPS) community in Britain and the USA has been fighting to get diagnosed, to have the condition recognised, to get the disability benefits they deserve, and to feel supported and believed, all whilst experiencing declining health and finding their world getting smaller and smaller. A research report such as that of the Mayo clinic could potentially damage the progress that they have made so far.

Anybody who knows anything about research will understand that 50 people living around the Mayo clinic is not a statistically representative sample of world-wide polio-sufferers, and that the Mayo clinic’s findings can only apply to people who had polio in that small region of America. It is likely that most of those people had the same strain of polio, which perhaps may turn out to cause fewer post-polio symptoms than other strains. To imply that PPS does not affect any polio victims is not a conclusion that can be drawn from such a limited study.

‘Benign’ is a wholly inappropriate word for this condition, which is progressive. The fact that it is so poorly researched and understood, means that those with PPS face an uncertain future, with no prognosis, and little treatment. For the Mayo clinic now to state that this life-devastating condition doesn’t exist, is just cruel and I think that the BBC has a duty to present the other side of this issue, rather than just reporting on a factually dubious and non-representative study.

Do I need to point out that if I had followed fifty people in my home town of Brighton who had had cancer, but survived, and then I published a report that said, “cancer doesn’t kill”, I would be drawing an equally crass conclusion?

Let’s have some responsible journalism. Yours sincerely [Anne Wood’s daughter]

Richard Warry replied:- Steve Herrman passed your letter dated I September on to me, as editor of the health index of the BBC News website. First please may I thank you for your message – and interest in the site. I apologise for any offence the piece caused you, but believe it to be a fair representation of the research.

That said, in light of your comments, the introduction has been changed to read “many people” rather than “most people”, and extra paragraphs have been added to highlight your concern that the sample was small and not necessarily representative.

My reporter did run this past a leading polio organisation, which was very positive about the study, and so I don’t think it fair to suggest that the research was presented uncritically. [Editors note—Post-Polio Health International]

Neither do I think it fair to suggest that the piece intimates that post-polio syndrome does not exist. In fact, it explicitly states that people who were most badly affected when originally infected are most likely to experience problems in later life.

Please may I assure you that every effort is made to ensure only responsible journalism appears on the site.

Kind regards, Richard Warry

Health desk BBC News website T: 0208 576 9610 news.bbc.co.uk/1/hi/health/

Readers attending our AGM, and/or subscribed to our Polio and Post Polio News Service and/or our Members Email List will already know that this caused a huge response from Polio Survivors worldwide.

I can well imagine your comments as you read this article. Take a deep breath, let it out slowly and relax those shoulders. Now read on. A huge amount of time has gone into reviewing all the related medical articles, writing, rewriting following peer reviews, and preparing the final documents for uploading to the Website. We would welcome comments from anyone reading this newsletter, and that includes your family and friends and health professionals.

The information in the medical article [1] had been extrapolated from a 15 year study of polio survivors in Olmsted County, Minnesota, that had been ongoing since the early 1980’s. In February 1996 The Lancet printed a review by McCarthy of the 1996 Windebank et al article ’Lack of progression of neurological deficit in survivors of paralytic polio: a 5-year prospective population-based study. [2] with the title

‘Study throws doubt on Post Polio Syndrome.’ [February 1996 – [3] Within weeks polio survivors were reporting that doctors were now telling them that PPS did not exist. Rebuttals were written to this article and Helena Edwards of the Leicestershire Polio Network pulled them together under the title ‘The Mayo, The Lancet and the Revolting Polios’, which can be read in the Online Library on our Website. [4] This was also published in the May 1997 LincPIN. [5]

Rebuttals to the main article in question were written by members Dr. Marcia Falconer and Professor Eddie Bollenbach [full article starts page 18 – [11]. Dr. Mary Westbrook in New South Wales, Australia reported this and wrote a rebuttal in their August newsletter [excerpt page 21 – [12]. Other rebuttals followed from Dr. Mavis Matheson [excerpt page 21 – [13], by member Dr. Ruth Bridgen [excerpt page 21 – [14]. I have also written an article [summary of some of the issues starting below – [15] but did not confine myself to this article, I looked at all other medical articles that related to studying polio survivors in Olmsted County. [1,2,4,6,7,8,9,10]

I was one of the Polio Survivors told in 1996 by my neurologist that ’he had just read an article in a medical journal that showed it had now been found that PPS did not exist’. I was therefore delighted when Mary McCreadie suggested the following as the title for my article,

‘Polio Survivors throw doubt on Study’ [September 2006 – [15]

I sent the article to Dr. Eric Sorenson with a covering letter. He replied ’Many of the points you raised are valid criticisms’ and made general comments ending with ‘I am sorry if our work has provided you or your colleagues difficulty or distress, none was intended.’[18] I replied with a list of very detailed questions but before I go any further I need to start at the beginning……..

The Mayo Clinic in Rochester, Olmsted County, Minnesota, U.S.A., are in the unique situation of having all medical records for the county since 1907. These were data based in 1938 using a coded diagnosis for easy retrieval.

In the early 1980’s the new problems being experienced by polio survivors presenting to clinics began to be discussed at conference level. The Mayo Clinic

decided to do a population based study to see if the results from the patients currently presenting could be generalized to the total population at risk. The retrieved information from the database showed that ‘608 people had been diagnosed with acute poliomyelitis between 1935 and 1960’. Based on the definition of paralytic poliomyelitis and a further clarification of the word paralytic in the

National Conference on Recommended Practices for the Control of Poliomyelitis, Ann Arbor, MI, 1949, personal communication it was decided that ‘300 met the criteria for paralytic poliomyelitis. The remaining 308 were either nonparalyzed or they had such brief paralysis that they did not fulfil the requirements.’

Mary Codd et al, in a preliminary report in 1984, [6] reported that 316 polio survivors had been recorded as being diagnosed with acute poliomyelitis in Rochester between 1935 and 1955. 201 were classified as having had paralytic polio and 115 non paralytic polio. Just over 50% of all cases occurred in 1952. 23 died at the acute phase and 7 since then and 23 remain untraced. Questionnaires were sent out and 125 completed questionnaires returned. 97 reporting no symptoms and 28 reporting new symptoms that had started between 12 and 35 years with a mean of 25 years since their polio. The questionnaire was supplemented by a detailed telephone interview for those who indicated deterioration since their maximal functional recovery from polio.[28 quoted above] In this interview, the subjects were questioned about excessive fatigue, decreased endurance, extent of muscle weakness, fasciculations, muscle cramps, muscle and joint pain, atrophy, contractions and deformity. Activities of daily living and increased needs for walking aids, wheelchair, personal and ventilatory assistance were discussed. In addition, patients were asked about intercurrent illness, surgical procedures, falls and fractures.

Based on these responses it was decided to expand the survey to include all residents of Olmsted County who had paralytic polio between 1935 and 1959. A 15 year study of 50 people was planned. Anthony J Windebank M.D. was the lead medical professional at the inception and at five years and Eric J Sorenson M.D. at fifteen years.

Our initial response is – as it has been since the Lancet article in 1996 – ‘Do the cohort of 50 fully represent the polio population as a whole’? Following a presentation at St. Thomas Hospital in London by Dr. Windebank on the results of the first five years study [2], I asked “How many of the 50 did sport?” Dr. Windebank replied that “one man could manage three holes of golf.” When I asked, ‘No swimmers, athletes, rugby referees, people in the police or armed forces?’ he emphatically replied, ‘these people had paralytic polio’. I replied, ‘so did the people I am talking about, including myself. They all had paralytic polio and some were even in iron lungs’. The seminar restarted and Dr. Windebank did not answer a follow-up letter.

I now go back to the medical article in question [1] and the statement made by Sorenson et al ‘Fifty representative subjects were randomly chosen from 298 patients’ which leapt out of the page. Light-heartedly we ask you to imagine a cartoon depicting a cemetery where the 53 polio survivors that died at the time of polio and since then are lying in their graves, with finger bones crossed, hoping that they are not going to be randomly chosen ‘for detailed historical, functional, psychological, clinical and electrophysiologic examination.’ Quoting from the 1991

Inception article ‘Of the 300 polio survivors identified, 30 (10%) died at the time of polio and 23 in subsequent years. 2 remain untraced.’ 300 minus 53 leaving a possible 247 if the 2 untraced were found and 245 if not.

In the 1991 article [8] Windebank reports ‘From the 247 survivors’ ‘58 subjects were called in to recruit 50’. ‘Fifty survivors who lived closest to Rochester were selected for the study. This group was likely to stay in the area and be available for follow-up study.’ Later in the article Windebank stated ‘There may be a tendency for more handicapped residents to remain geographically closer to our clinic.’ and ‘These subjects were not seeking medical attention; they were invited to participate on the basis of their having had polio.’ So you can see that randomly chosen is not an accurate statement.

I extrapolated phrases and numbers from each of The Study’s articles onto a large chart. I found other apparent anomalies and points that I felt needed raising with the authors of The Study. The following are some I am taking up with Dr. Sorenson.

1. In the 1991 [8] article In Table 2 they compare some statistics between the 50

chosen and the 197 not chosen (50 + 197 is 247). The age at polio and then

34/35 years later is given for the 50 (1.5 to 36) (35 to 71) and for the 197 (1 to

47) (35 to 76). Age 47 + 35 years is 82 not 76.

2. The mean age of polio survivors at the time of polio starts at 9 years in 1984,[6]

increases to 13 years from the 50 involved in the study [8,2,10] and to 15 years

from the 38 remaining in the latest article.[1] As polio was originally called

infantile paralysis, do you think 13 and15 as the mean (average age) seems

high?

3. Comparing figures at the three points of the study, Inception, [8] 5 years [2] and

15 years. [9]

a. At inception 32 of the 50 are reported as having symptoms, 18 did not. [8]

b. At the five year point the figure with symptoms reduces to 30. Windebank

reports ‘Of the original cohort of 50 subjects, 46 returned to complete the

studies. Of the four who did not return, two completed the symptom

questionnaire and two reported by phone that they were doing well. No data

were analyzed from the two subjects interviewed by telephone.’ One

therefore assumes that this is why the number is reduced to 30. However, in

the next paragraph he states that ‘23 individuals had at least one of the

complaints at the first and second evaluation, 12 had no complaints at either

evaluation, 7 had complaints at the first but not at the second [this is the

only mention of this fact, no explanation is forthcoming] six had no

complaints at the first evaluation but did have a complaint at the second.’ [2]

23 plus 6 with complaints is 29 not 30. 12 plus 7 without complaints is 19. 29

plus 19 are a total of 48. (Figures on table and words do not match)

c. At fifteen years out of 38 remaining in the study, 31 had symptoms and 7 did

not. [9]

4. We know from the 1991 Inception article [8] that ‘Creatine Kinase levels were

increased in 10 of the 50 subjects…all of these subjects had new symptoms’ and

‘All of the subjects with increased CK values also had significant residual

weakness and atrophy’. In discussion they also stated ‘Of note, equally weak

subjects without new symptoms did not have increased CK levels, and there

were no subjects with a normal examination who had abnormal CK levels.’

Excerpt of 337 item questionnaire.	COULD	CAN
A	B	C	A	B	C
1. Manage a small flight of stairs (10 steps)
2. Get in and out of bed
3. Sit down/get up from a chair
4. Manage to bathe or shower
5. Dress and Groom myself
6. Feed myself
7. Carry out home activities (cooking, laundry,cleaning etc)
8. Go out shopping.

There is no mention of CK testing at the five or fifteen year points of the study.

5. Functional testing – Some tests for diabetic neuropathy were chosen to test polio

survivors function. To test function of the legs the only test was a timed test to

walk 100 feet. To test arms the tests were standard timed pegboard tests of

placement and displacement, pin and collar manipulation and screw

manipulation. Do you think these four tests were an appropriate choice to test

functional change in polio survivors?

6. Windebank decided to compare the maximal score for complaints in polio

survivors to those with ALS [8] (Amyotrophic lateral sclerosis or Lou Gehrig’s

Disease or MND – Motor Neurone Disease). Survival from diagnosis of ALS is

rated as 2 to 5 years. The combined score for ALS is 10 to 20 (early disease)

and 20 to 40 (late disease). The combined score for the polio survivors at the

inception of the study was 8. However remember these subjects were not

seeking medical attention and had been diagnosed with polio between 30 and

50 years earlier. Do you think comparing Polio with ALS is appropriate?

7. The questionnaire covered 337 items, so initially one would expect this to give a

considerable amount of information. Unfortunately all the questions were ticking

boxes. Here is a sample. A – Independently and with ease. B – Only by using

adaptive equipment. C – Completely unable to do this.

As most of our readers know, Polio Survivors will gladly answer ’Yes’ to ‘Can you’ because we are proud of what we achieve. Ask us ‘How do you’ and hear a huge variety of answers, which tells a different story.

Take question 3. Sitting down and getting up from a chair. There is no mention of height of chair or if it is a dining chair with or without arms, or a lounge chair. My answer would change depending on which chair. Also using my arms to push myself up I don’t think is using adaptive equipment so therefore my only option is to say that I do this independently and with ease which is not accurate. How do you answer question 7 when (cooking, laundry and cleaning etc) are combined? Leaning against work surfaces, holding on with one hand whilst you use the other, sliding saucepans instead of lifting them, using a slotted spoon to

list the veg out of the water, vacuuming a different room each day instead of doing them all each day as you used to, etc., How would you answer this, and do you think the way you do this is using adaptive equipment?

When you add this to the first rebuttal of the article [1] by Members Marcia Falconer, PhD and Professor Edward Bollenbach [11] published on 27th August 2006 on our Polio and Post Polio News Service.

Examining a Controversial PPS Publication by M. Falconer and E. Bollenbach.

Recently a controversial article, “Electrophysiological findings in a cohort of old polio survivors” by Sorenson, Daube and Windebank was published in the Journal of the Peripheral Nervous System, volume 11, pages 241-246, September 2006. The findings in this article are the subject of heated discussion in the PPS world. Below we examine this article.

A scientific article usually is divided into parts; an abstract, which gives a brief overview of the article; the introduction, where related findings are discussed; the methods, which tell how the work was done; the results, which tell what was found in the study and the discussion in which the results are put into context with previous findings. In this final section the authors can speculate on wider implications of their findings.

The discussion section is often the source of intellectual debate. On occasion this debate can be vigorous, particularly when data from different studies point toward very different conclusions. Science would not be science if it was not exciting and controversial. We can expect scientists to have honest disagreements about methods, results and especially the discussion section of a paper. Unfortunately the debate is sometimes removed from the scientific arena to the public one when the popular press, or the internet, seizes upon an idea or a statement in the article. This appears to be the case in the article by Sorenson et. al. In particular, one statement in the discussion section has been sensationalized. The statement is: “This suggests that the most likely cause for the decline in our polio survivors is aging alone.” It is easy to understand why this sentence was highlighted. Taken out of context, this statement can infer that Post-Polio Syndrome (PPS) does not exist. It can even be interpreted, incorrectly, to mean that people with PPS are no worse off than their similarly aged peers with all this implies. Taken within the context of the reported data, the statement does not mean any of this.

This study is based upon two electrophysiological studies with the results explained using statistical methods and models. It is complex for the layperson to read and understand but it was not designed for the general reader. It is designed to pass specific data to people working in the field who are conversant with the methods and the interpretations of this data. We present here a less technical, but still scientifically accurate, summary of the main points in this paper.

In this study, the muscle strength and symptoms of 38 people with a history of prior paralytic polio were studied at 5 year intervals for 15 years. Innervation to two muscle groups, the thenar muscle at the base of the thumb and the digitorum brevis muscle on the sole of the foot, was examined using two electrophysiological measurements. One technique, CMAP (compound muscle action potential), examines the maximum amount of muscle contraction that can be achieved. The second technique, MUNE, (motor unit number estimate) provides information about

the number of motor units in that muscle. A motor unit is a group of muscle fibers for which the message to contract is carried by a single neuron coming from the anterior horn of the spinal column. Both techniques indicate the functionality of the nerve that is tested.

The underlying cause of Post-Polio Syndrome remains unknown. Current theories include chronic inflammation of the spinal cord and die-back of recovered neurons from overuse. The “die-back hypothesis” suggests that fragile neuronal sprouts (which reinnervate muscles after the loss of neurons during acute polio) die because of metabolic stress caused by overuse. These two suggested origins for PPS are not necessarily contradictory but rather examples of different levels of observation; one at the tissue level, the other at the cellular level.

31 of the 38 people in the Sorenson study indicated they have PPS and experienced progressive muscle weakness during the 15 year period. 7 did not have PPS symptoms and did not experience this. It was found that the amount a muscle could contract (CMAP measurements) declined equally in people with PPS symptoms and people without symptoms. The number of motor units that could be activated (MUNE measurements) declined in both groups, but, oddly, there was a greater decline in people who did not report new muscle weakness! Since increasing weakness is associated with increasing loss of nerve connections to motor units, clarification or discussion of this unexpected result would be good. A significant flaw in this article is the use of results derived from another study with different methods. It is acceptable to discuss and compare results from different studies. It is not acceptable to use the results of others to replace missing elements of your own study. This is particularly true when different methods were used to obtain the results. The authors did exactly this in the most provocative part of the publication. Because this study does not have a ‘normal control group’, the authors took the results from another, undefined study, with different methodology, to get data about people who did not have polio. They then compared the results from their electrophysiology study on polio survivors with the results from this undocumented study. By doing this, their comparison of the effects of aging in polio survivors and normal people is meaningless.

It is clear that the statements causing most concern to people with PPS are the ones least supported by the evidence. Unfortunately, these statements also are the ones most likely to be picked up and sensationalized. They are, in the authors’ own words, “…the similarity of our results suggests that our polio cohort did not age any differently than a normal population. This suggests that the most likely cause for the decline in our polio survivors is aging alone.” To make a statement with such import, the data that supports it must be impeccable. It is not. Without appropriate data the conclusion is unfounded and inflammatory.

Saying that “the most likely cause for the decline in our polio survivors is aging alone” invites many questions. For example, all polio survivors age, but not all polio survivors report an accelerated decline. What about them? What about young people, from the less developed world where polio is still endemic? They are reporting symptoms of PPS and they are not at the point where age causes loss of neurons. To ascribe aging as the main cause of PPS new muscle weakness ignores the other severe problem of PPS – central fatigue – which has no obvious connection to aging.

Indeed, to say that the decline is due to aging alone also suggests that the aging process is the root cause of PPS. This is a gigantic leap and ignores documented differences between similar aged polio survivors who have PPS and those who do not. Specifically, the profile of proinflammatory cytokines is significantly different in the two groups (Gonzalez et. al. J. Neurol. Sci. [2002] 205: 9-13), as is the presence or absence of poliovirus fragments in cerebrospinal fluid (Leparc-Goffart et. al. J Clin Microbiol [1996] 34: 2023-2026). Neither of these is typical of an aging population.

In addition, the Sorenson et. al. citation of work by McComas et. al. is perplexing. McComas disagrees about aging being the most likely cause of new weakness. Indeed, actually says the opposite. To quote from McComas et. al. “…denervation progresses in patients with prior poliomyelitis …and …this progression is more rapid than that occurring in normal aging.” (McComas et. al. Brain [1977] 120, 1415- 1421).

The data in the current study shows that people with prior polio lost motor units at 3% per year. In the McComas article people with prior polio lost motor units at the rate of 6.7% per year and people without prior polio lost motor units at half this rate. Sorenson et. al. then say that “The rate of decline in our polio cohort was approximately the same as the normal population in the McComas study but about half that in their polio patients.” It is not clear why this statement is included. It appears the authors are saying that the decline in the polio group in their study is the same as the decline in the normal population of the McComas study and this supports their contention that PPS weakness is due to normal aging. However they are comparing apples and oranges – results from two different studies. Moreover, the two studies came to diametrically opposed conclusions about PPS weakness and aging.

Another controversial part of the article is the suggestion by Sorenson et. al. that there are two models to explain new muscle weakness in PPS. One is “linear loss” where the loss of neurons (and hence of strength) is a constant rate of decline for everyone as happens in normal aging. The other model is “proportional decline” where the loss is related to the amount of damage from acute polio. In the discussion, the authors say that the proportional model best explains their findings. However the authors also say that neither model closely fits their data! This strongly suggests that neither model is correct. Therefore, the pattern for new muscle weakness is not related to a slow general loss (as is found in everybody with aging) and it is not (solely) related to the amount of original paralysis. There are other rate laws which could describe the way new muscle weakness is appearing. It might have been illustrative if these had been explored. It appears that the model preferred by the authors does not support their hypothesis that muscle weakness (loss) is related to normal aging (the first model).

Sorenson et. al. tell us that “The large degree of variation seen in both models may be a reflection of the underlying variation known to occur with most MUNE techniques available currently.” This means that the method used to obtain this data may not be adequate for the job asked of it. In other words, be a bit sceptical about the results.

On a different topic, the authors say that “There was no association between the magnitude of decline in either the summated CMAP amplitude or the summated

MUNE and the presence of symptomatic progression.” One interpretation of this data is that a decline in the function of the two muscles they tested does not correlate with symptoms of new muscle weakness elsewhere in the body. If there is a significant relationship between the muscles tested and those generally reported as becoming weaker, this should be demonstrated or referenced.

This article is controversial not because of its actual findings, but because of the interpretation of its findings. The authors were poorly served by reviewers whose job was to point out all of the inconsistencies described above. This article has many statements that are not supported by the evidence. Unfortunately the popular press found a critical one and sensationalized it.

Address Correspondence to marcia.falconer@lincolnshirepostpolio.org.uk and eddie.bollenbach@lincolnshirepostpolio.org.uk

Also take into account the additional rebuttals in date order

In Post Polio Network (NSW) Inc’s Newsletter Issue 71, August 2006. Dr. Mary Westbrook titles her rebuttal ‘Inaccurate Mayo Clinic News Release Threatens Polio Survivors’ Wellbeing and Healthcare; and ends her article with the paragraph, ‘Thus it is clear that this recent research suffers from several significant limitations. The sample was small in size and did not identify those with PPS and those without PPS. The measures failed to include important symptoms of PPS and these often have the most negative influence on survivors’ quality of life. The spin placed on the results by the Mayo Clinic News Release in inconsistent with the study’s results. The release ignores, and is contrary to, findings from a very large body of rigorous research into the late effects of polio, many examples of such research can be found in Silver and Gawne’s recent book [17]. The greatest concern for polio survivors is the potential damage that this media release may cause in undermining their family and social support and increasing the risk that health professionals may dismiss their symptoms or prescribe inappropriate treatments. Post-polio support groups frequently witness how such happenings can have very detrimental effects on polio survivors wellbeing.’ [12]

In “MUNE data review”, Dr. Mavis Matheson discusses significant inconsistencies in the math. “I’ve reviewed the article and if the math is done correctly, one gets entirely different results.” [13]

In another article “The Mayo Clinic haunts postpolio patients again”, member, Dr Ruth Bridgens discusses a number of aspects including the cohort’s applicability to the wider population of polio survivors, the limitations of the measures chosen and the interpretation of their findings. [14]

4th November 2006. Dr. Sorenson has just replied to my letter and list of questions stating ‘I am sorry but I am unable to dedicate all the time necessary to respond individually to the detailed correspondence you provided. If you wish to share my previous responses I have no objection to that. Unfortunately I am not able to come to Jacksonville while you will be in the States. I would be happy to meet with you if we could arrange a mutually acceptable time.’

References.

a. Mayo Clinic Newsbureau – August 21st 2006. http://www.eurekalert.org/pub_releases/2006-08/mc-soc081506.php

b. HealthDay reporter – August 24th 2006.

http://news.yahoo.com/s/hsn/20060825/hl_hsn/manypoliosurvivorsfaringwell

c. BBC News – Health – UK Update – August 26th 2006 (some wording later modified)

http://news.bbc.co.uk/1/hi/health/4799725.stm

1. Sorenson EJ, Daube JR and Windebank AJ (2006) Electrophysiological findings in a cohort of

old polio survivors, Journal of the Peripheral Nervous System, Vol 11:241-246

2. Windebank AJ, Litchy WJ, Daube JR, and Iverson R. (1996) Lack of progression of neurological

deficit in survivors of paralytic polio: a 5-year prospective population-based study. Neurology

46:80–84

3. McCarthy M. (1996) Study casts doubt on postpolio syndrome. Lancet, 347: 458

4. Edwards, H. (1996) The Mayo, the Lancet and the Revolting Polios: Comments on The Lancet

review. The Lincolnshire Post-Polio Library, http://www.ott.zynet.co.uk/polio/lincolnshire/

library/uk/peerrev.html

5. May 1997 LincPIN, Newsletter

http://www.ott.zynet.co.uk/polio/lincolnshire/linkpin/linkpin975.html

6. Codd MB, Mulder DW, Kurland LT, Beard CM, and O’Fallon WM. Poliomyelitis in Rochester,

Minnesota, 1935-1955: Epidemiology and Long-Term Sequelae: A preliminary report. (1985)

In LS Halstead & DO Wiechers (Eds.) Late effects of poliomyelitis. Symposia Foundation,

Miami, 121-135.

7. Windebank AJ, Daube JR, Litchy WJ, Codd M, Chao YS, Kurland LT, Iverson R. Late Sequelae

of Paralytic Poliomyelitis in Olmsted County, Minnesota. In: Halstead LS, Wiechers DO, eds.

Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains, NY: March

of Dimes Birth Defects Foundation; Ser. 1987;23(4):27-38.

8. Windebank AJ, Litchy WJ, Daube JR, Kurland LT, Codd MB, Iverson R. Late effects of paralytic

poliomyelitis in Olmsted County, Minnesota. (1991) Neurology 41:501–507.

9. Windebank AJ, Litchy WJ, and Daube JR, Prospective Cohort Study of Polio Survivors in

Olmstead County, Minnesota. (1995) Annals New York Academy of Sciences. The PostPolio Syndrome: Advances in the Pathogenesis and Treatment. Volume 753:81-86.

10. Sorenson EJ. Daube JR. and Windebank AJ. (2005) A Fifteen year follow-up of Neuromuscular

Function in Patients with prior Paralytic Poliomyelitis. Neurology 64(6):1070-2

11. Sorenson EJ and Windebank AJ (2005) Incidence of adaptive equipment use in subjects with a

remote history of paralytic poliomyelitis Neurology, 65: 963

12. Dr. Marcia Falconer PhD and Professor Eddie Bollenbach ‘Polio and Post-Polio News Update:

Examining a Controversial PPS Publication. [Part IV – The Rebuttal].’

http://mt.lincolnshirepostpolio.org.uk/archives/pandpp-news/001879.html

13. Dr. Mary Westbrook. PhD, AM Post Polio Network [New South Wales] Inc. Network News –

Issue 71, August 2006. http://www.post-polionetwork.org.au/news/Mayo_Research.pdf

14. Dr. Mavis Matheson. MUNE data review.

http://www.lincolnshirepostpolio.org.uk/downloads/extra/munedatareview.pdf

15. Dr. Ruth Bridgens. The Mayo Clinic haunts postpolio patients again.

http://www.lincolnshirepostpolio.org.uk/downloads/extra/mayohauntsagain.pdf

16. Hilary Boone. Study throws doubt on Post Polio Syndrome.

http://www.lincolnshirepostpolio.org.uk/downloads/extra/poliosurvivorsdoubtstudy.pdf

17. Silver JK, MD and Gawne AC, MD. Postpolio Syndrome published by Hanley & Belfus,

323 pages. www.elsevierhealth.com

18. Dr. Eric Sorenson. Polio and Post-Polio News Item. [Part VI – The Authors response]

http://mt.lincolnshirepostpolio.org.uk/archives/pandpp-news/001995.html

Another medical article of Interest to those of us who have Memory Problems. We will endeavour to get more information for the next newsletter.

23rd October 2006—The Mayo Clinic in Rochester, Minnesota, U.S.A.

Mayo Clinic Study suggests that a Central Nervous System Viral Infection can lead to Memory Deficits in later life. The study was published in the November issue of Neurobiology of Disease and explores the implications of picornavirus infections. The authors of the study are Charles L Howe, Ph.D, a Mayo Clinic neuroscientist and Eric J Buenz, Ph.D, a recent graduate of the molecular neuroscience program at Mayo Graduate School.

How I Cook the Turkey, A Thanksgiving Story By Dr. Mavis Matheson – mavis.matheson@accesscomm.ca

Thanksgiving is over here but Christmas won’t be far behind. Turkey dinner is the traditional meal on special occasions. When I tell fellow polio survivors I still make the turkey dinner for holidays they are impressed. They say “I just don’t have the energy any more.” Using my cooking methods, anyone can make the festive dinner. An aside about side dishes – DELEGATE – It doesn’t matter if you insist your guests bring everything else, she who cooks the turkey, cooks the dinner. I MAKE SURE EVERYONE UNDERSTANDS THIS. I cook the turkey.

About a week before the holiday, turkeys go on sale. I’m not strong enough to actually lift a frozen turkey so I need some help. After their first experience of lifting the third, fourth and fifth turkey out of the freezer for me to reject, the store clerks eyes glaze over and they scatter when they see me coming. I have to flush them out of the foliage in the produce department to get their help. Family members know they will be eating the bird so they have a vested interest in helping me pick the best one. I find by rotating the job, each family member has time to forget the experience of his last turkey expedition. After we choose the bird, he puts it in the shopping cart, lifts it on to the checkout counter, loads it into the car, carries it from the car to the freezer and puts it in the freezer. My turkey rests in the freezer until I am ready to prepare it.

When I am working in the kitchen, I dress the part. The day before the big feast, I thaw the turkey. I put the plug in the sink. I get someone to lift the turkey out of the freezer, and put it in the sink. I run cold water over the turkey and let it sit until it thaws. This takes me about 12 hours. Once the turkey is thawed, I call for someone to lift the turkey into a bowl and put it into the fridge until it is time to get it ready for the oven.

My son loves stuffing so I get him to cut the bread into squares, chop the celery and dice the onions. I put the bread and herbs and spices together. I set the stove to 325 degrees. I get my partner to lift the turkey out of the fridge, take off the wrapper, clean off the bird and put it on the roasting pan. I spoon in the stuffing. He turns the bird over so I can stuff both ends.

My partner puts the roaster into the oven. It takes me 5 to 6 hours to cook the turkey. Two or three times during the cooking process, he lifts the turkey out of the oven and tips the pan so I can get at the drippings. I baste my turkey. He returns the pan to the oven. My partner takes the turkey out of the oven so I can remove the cover for the last half hour of cooking. He returns it to the oven. When it is done, he removes it from the oven again.

I allow the turkey to sit on the cutting board for 10 minutes before carving. My partner puts it on a serving platter and puts the platter on my kitchen trolley cart. I triumphantly push it into the dining room. I savor my turkey and my family’s admiration.

Because I cooked the meal, my family cleans up. They cut the meat off the turkey, put the leftovers in the fridge, boil up the bones for soup, and clean the kitchen while I have another coffee. I know it all seems like a lot of work but your friends and family will appreciate it. Cooking the turkey for your feast, it’s a good thing.

Dr. Mavis Matheson lives with her partner, Adam and two sons in Regina, Saskatchewan, Canada. http://nonprofits.accesscomm.ca/polio/Mavis.htm

– – – –

POLIO: A VIRUS’ STRUGGLE A Graphic Novella

By James Weldon http://www.scq.ubc.ca/?p=45

This is a heads-up to those friends who haven’t experienced it yet, and an explanation to those friends and family who have. Most of you have read the scare-mail about the person whose kidneys were stolen while he was passed out. Well, read on. While the kidney story was an urban legend, this one is not. It’s happening every day.

My thighs were stolen from me during the night a few years ago. It was just that quick. I went to sleep in my body and woke up with someone else’s thighs. The new ones had the texture of cooked oatmeal. Who would have done such a cruel thing to legs that had been mine for years? Whose thighs were these and what happened to mine? I spent the entire summer looking for my thighs. Finally, hurt and angry, I resigned myself to living out my life in jeans and Sheer Energy pantyhose.

Then, just when my guard was down, the thieves struck again. My butt was next. I knew it was the same gang, because they took pains to match my new rear end (although they attached rather poorly at least three inches lower than my original) to the thighs they stuck me with earlier. Now, my rear complemented my legs, lump for lump. Frantic, I prayed that long skirts would stay in fashion.

It was two years ago when I realized my arms had been switched. One morning I was fixing my hair and I watched horrified but fascinated as the flesh of my upper arms swung to and fro with the motion of the hairbrush.

This was really getting scary. My body was being replaced one section at a time. How clever and fiendish.

Age? Age had nothing to do with it. Age is supposed to creep up, unnoticed, something like maturity. NO, I was being attacked repeatedly and without warning. In despair, I gave up my T-shirts. What could they do to me next?

My poor neck disappeared more quickly than the Thanksgiving turkey the replacement one resembles.

That’s why I decided to tell my story. I can’t take on the medical profession by myself. Women of the world, wake up and smell the coffee. That really isn’t plastic that those surgeons are using. You KNOW where they are getting those replacement parts, don’t you? The next time you suspect someone has had a face “lifted”, look again. Was it lifted from you? I think I finally found my thighs, and I hope that Cindy Crawford paid a really good price for them!

This is not a hoax. This is happening to women in every town every night. Warn your friends. P.S. I must say that last year I thought someone had stolen my breasts. I was lying in bed and they were gone! As I jumped out of bed I was relieved to see that they had just been hiding in my armpits as I slept. Now I keep them hidden in my waistband.

See If You Can Figure Out What These Words Have In Common.

Assess — Banana Dresser — Grammar Potato — Revive Uneven — Voodoo

Answer on bottom of page 27.

The Post-Polio Experience: Psychological Insights and Coping Strategies for Polio Survivors and Their Families

Margaret Backman, Ph.D., a Clinical Psychologist in New York City, has written numerous articles and given presentations on the psychological aspects of post-polio. She has now published a book based on her more than 25 years of experience with those who had polio.

Today many polio survivors find themselves with new symptoms reminiscent of the earlier days when they first had polio– these new symptoms trigger frightening memories that had long been repressed, along with anxieties about what the future holds.

In The Post-Polio Experience Dr. Backman, examines polio survivors’ psychological reactions to their earlier experiences and to their current struggles with the late effects of polio. Topics include:

0 Understanding the early years

0 Issues of abandonment and anxiety, loss and bereavement

0 Facing the future

0 The Polio Personality: Does it exist?

0 Role changes from the perspective of significant others The book also includes practical guidelines for survivors on:

o Coping with the emotional and interpersonal aspects of PPS

o Giving and receiving help, gracefully

o Managing stress and depression

o Negotiating relationships with family and friends

o Developing a positive self-concept

o Improving doctor-patient communication

Family and friends will also find the The Post-Polio Experience of interest. In the book they learn how to deal with the changing roles that they and the survivor now face and gain insight into their own needs, which interact and sometimes conflict with the polio survivor’s needs.

Mental health providers, physicians, and other health professionals gain a better understanding of their patients’ psychological reactions to Post-Polio Syndrome–paving the way for more effective treatment. An entire chapter is specifically written for physicians to aid them in their interactions with polio survivors.

The following from page 130 was suggested by Margaret Backman to reproduce in this Newsletter.

Table 4 – Communicating with Significant Others. Survivors say:

“When I say I’m tired, I mean it.” “Don’t overestimate what I can do.” Significant others say:

“Consider me too.”

“When you see I’m busy give me time to finish what I am doing.”

“Thank me once in a while.” POSITIVE BEHAVIOURS:

Think about what you really want, and how you can make it happen…

…. In a positive way.

The Post-Polio Experience can be purchased through the publisher: www.iuniverse.com, or 1-800-288-4677, Ext. 501. The book is also available through Amazon.com, Barnesandnoble.com, and through special order at Barnes and Noble bookstores. The cost is $18.95, plus shipping and sales tax, where applicable. U.K. www.amazon.co.uk the cost is £10.91 and available for Free Delivery on orders over £15.

What’s been happening on the E-Mail Forum

It doesn’t seem to matter what the problem or question, there is always someone on the email list who is able to help! In the last few months, we’ve discussed quite a variety of subjects – everything from the BBC through to Incapacity Benefit, and many points in between. Here’s just a small selection of what we’ve been talking about:

Incapacity benefit forms. “A few days ago I received an IB form in the post. I have been on this benefit since 2001, and wonder why they have decided to send me another form now (to be honest, I had a few minutes of blind panic). Once I had calmed down, I rang jobcentreplus and asked why I had been sent it, but I just got a lot of waffle and stonewalling – the upshot being that if I didn’t go through all the rigmarole and return the form I’d lose the benefit. Has anyone had a similar experience recently?”

“This happened to me a couple of years ago and I was told that it was a routine check to see how my condition had changed. I think their concern is that some people succeed in claiming IB then their condition improves and they do not notify the authorities.”

“…current IB can be reviewed by DWP at any time but I don’t have any info on how often or for what specific reasons.

Disability Rights Handbook – http://www.disabilityalliance.org/drh31.htm

Absolutely everything you need to know including how to fill out forms. It costs £13.50 for people on benefit but is worth it (it’s updated every year). It’s also supplied as a CD-ROM but that’s more expensive.”

“I got help from my local council’s Care and Repair department. Every council has something of this nature, and it might be well to contact yours and ask. These departments aren’t always called the same thing, so you’ll have to explain to the receptionist what you mean! They are well versed in completing IB application forms, DLA and IS….you could also ask the BPF for help.”

“Travel insurance; if you need it where is the best deal?”

“I have used my Banks Holiday Insurance. I get 30 days free insurance and then have to pay for days on top of that. There are no questions asked, nothing to fill in. All they ask when I ring is for the date of leaving and the date of returning and work out the extra amount that I have to pay.”

“This is a) not from personal experience, just from a search in response to a similar question on another list, b) “cover is for Medically or Physically disadvantaged people up to the age of 60 years inclusive” and c) possibly more expensive than Saga. http://www.ourway.co.uk/pre-existing.htm”

“I’ve just had a quote from Saga, for insurance for a week in the USA. £40.20 – which covers me for absolutely everything, including re-patriation. PPS didn’t seem to be a problem at all – although if I had breathing problems, then I assume the price would go up”

“What hobbies do you all have?”

“I am a singer and singing has been my main hobby most of my life, in amateur operatic societies, choirs and for 7 years we had our own semi-pro folk group which was enormous fun.”

“I have found that having a “project” or two in hand at all times is a good cure for moods that lead to depression.”

“I go to a day centre for disabled people… I find it very gratifying and it helps me get out of the four walls twice a week. I get to meet all kinds of people and the other people that go on the same days I do are always smiling and joking.”

“If gardening is an interest there is a charity called ‘THRIFT’ who help disadvantaged people.

“I did a computer course several years ago and that was free but our local place has been closed due to redevelopment and cut-backs.”

“I play speed chess on the internet which depending on the time allows me to be beaten (mostly) by any nationality in the world and more recently I’ve started taking up digital photography.”

“I’ve learnt to play bridge and now play socially but also play on line.” “Should we, as disabled people, receive free TV Licences?”

“One way to avoid paying the TV licence is to live with someone over a certain age…I think it’s 75…? Perhaps you could persuade a Golden Oldie to move in with you.”

“We all complain about discrimination against disabled people. If we received free TV licences, wouldn’t that be discrimination?”

“We pay our licence monthly by direct debit. It makes it easier and doesn’t come as a shock at the time of the licence renewal.”

Thank you to everyone who contributes to the e-mail discussions – your input is absolutely invaluable. As with any e-mail group, we know that we have some ‘lurkers’! (This is not a rude expression, just a term to describe those who like to read but perhaps don’t feel ready to contribute.) What you have to say is important to us all, and we’d love to hear from you! If you would like to join the e-mail list, please send an e-mail to join-pnl@lincolnshirepostpolio.org.uk (please include your full name in the email). Those of you who are not on the Internet can write to our main address or you could phone the Polio Survivor on duty this week [message on 01522 888601 as to who is on duty]. The more we share information and stories the more we learn.

Have you ever written a Limerick?

Well by chance we came across this site OEDILF—the Oxford English Dictionary In Limerick Form. ‘The OEDILF Project, our online Limerictionary, is proud to present the work of writers living in more than a dozen countries.’ At the moment you can write Limericks from pre-A to Cd. Your Limericks are reviewed by Editors with suggestions of how you can improve them and they progress through New to Tentative to Approved. Hilary has submitted seven so far and here is the one she wrote for the word assessment.

Neuromuscular patients complain, Lack of testing repeat or sustain, Can grade muscles much higher, With results that are dire:

“Change assessment points, that’s our campaign”.

Answer from Page 24. Put the first letter of each word at the end and read backwards. Same word.

First meeting of South Western Members

I did not actually know anybody locally with PPS. There are no easily reached groups or meetings to join in my area, and one tends to feel very much ‘the only one’. Attending the Lincolnshire PPN AGM, taught me that being with a group of people who accept you as you are – without the sideways glances that say ‘I wonder what’s the matter with her’ – or the feeling that others are having to make special arrangements for you, is both energising and liberating.

22nd September saw the very first, and decidedly impromptu meeting of some of our members in the South West. Hilary and Richard had decided to take a few days break in Bristol which seemed an ideal opportunity to have a little get-together.

I contacted as many members in the area as possible, to let them know that we would be at the Central Travelodge in Anchor Road from 11.00a.m. onwards, and that they would be very welcome to join us. I have to admit, I was a bit concerned that we hadn’t given people enough notice – but I needn’t have worried – it was a wonderful turn-out!

The manager of the hotel was a delightful man, who seemed to be quite happy for us to take over his café-bar and provided free coffee for us all. As the hotel didn’t serve food at lunchtime, he allowed us to ‘picnic’ on sandwiches bought from M & S across the road from the hotel. It’s surprising how hungry one gets just laughing and talking!

This was essentially a social occasion – a chance to put faces to names, meet people who are going through the same difficulties, and swap ideas on how to overcome various problems. But perhaps the most important thing about socialising in this way, is that it underlines the fact that we are NOT alone. And even if we’re spread out geographically, we can occasionally meet, chat, laugh and learn.

The photo below shows just a few of the gang – sadly we just couldn’t get everyone in shot :

Member Kay Preece [they caught polio at the same time] who couldn’t be with us.

I’d like to thank everyone who turned up, and made the whole thing such fun! Many of you travelled quite a distance to be with us, and it was much appreciated. I’m hoping very much that we can have more get-togethers like this, and do please note that everyone is welcome, no matter where they live! The weather and time of year are somewhat against us just now, but it won’t be long before Spring arrives, and we can arrange to meet again.

If anyone has any ideas about where they would like to meet, or ideas for things to do, please let me know! The Exeter area, with an overnight hotel stay, has been suggested. [If you would like to meet up with others in your area then email me or write to me c/o our main address and I will do what I can to help facilitate meetings in other areas.]

Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk

Left to Right are Shirley Rose, Dinah Foweraker, Paul Stanton, Hilary Boone, Vic Oliver,

John and Pat Thomas.

Not shown in the picture, but very much with us were Richard Boone, Bridget and Derek Langdon,

David Rose (who took the picture— thanks David!) and Linda, daughter of

Linc Pin Volume 5 Issue 11 Read More »

Linc Pin Volume 5 Issue 10

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 10 — August 2006

WebSite – http://www.lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

As the Hudson Bay blanket is placed around their shoulders by Best Man Bill Westfall,

Hilary and Richard become one

married by ‘Walking Owl’ on March 25th 2006

PLEASE SUPPORT THIS EVENT Full Flyer Page 15.

Kathleen Burrell from Lincolnshire. Continues on back page.

CONTENTS

Page 2—Contents and Contact Information. Page 3—Editorial by Hilary Boone

Page 4—I was so lucky I had a ‘Full Recovery from Polio?’ by member Ellen Riddle. Page 6—Hints, Bits and Tips from other Polio Survivors.

Page 8—Mary McCreadie’s Kitchen Saga Page 10—A few bits to make you smile.

Page 11—Excerpt from Kathleen Burrell’s chronicle of her life Page 14—Dysphagia by Carol Blatcher, Speech Language Pathologist.

Page 15—Flyer for the AGM [Please let us know if you can/cannot join us] Page 16—Kathleen Burrell shows us her ‘Helpers’

ENCLOSED—Annual Report and Accounts

A Big Thank You for the Donations received from:-

Norman Jones, David and Jane Shaw, Michael Horton, Roy Prentice, Pamela Minnitt, Val Scrivener, Robin Butler, Margaret Edmonds, Patrick Peacey, Jacqueline Williamson, Angela Johnson, Margaret Lamb, Barry Branston, Steve Clynch, Clare Colfer, Agnes Walker , Joan Deans, Thomas Croker, Kathleen Burrell, Jeffrey Edwards, Lynne Hobday, Robert Price, Jann Hartman, Jean Hill, Beverly Buccellato, Lena Jennings, Susan Sonski, Jim & Jenny Rayner, Sylvia Fortune, and the Operations Team and Committee.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – September 2006

Articles for publication 4th August by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Secretary– Hilary Hallam – hilary.hallam@lincolshirepostpolio.org.uk Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Committee Member – Di Newman – di.newman@lincolshirepostpolio.org.uk Operations Team

Email List Facilitator – Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Editorial by Hilary Boone.

Quite a few people have contacted me asking for a photograph of our Wedding and I realised that I had not put one in the last issue. The one on the front page is special to us as it is the moment when Richard and I became husband and wife. As part of the Native American ceremony I had to bring a basket of fruit and corn to show that I could feed ‘my hunter’ and he had to bring a blanket to show he could provide shelter for me. This blanket is then used in the ceremony and put round our shoulders to join us as husband and wife. “Grandfather, they came to you as two and they leave as one” said the Reverend Walking Owl lifting his bearded face to the sky. “Never again shall they walk alone in the world. Walking Owl is a fellow Florida Frontiersman and Spiritual Leader of the Métis nation. Richard introduced me to Re-enacting the Pioneer/Mountain Men life of the 1700’s to 1840 We joined the Florida Frontiersmen and with their help we have participated for five years. Thank you to the folks who contacted me regarding the last newsletter, commenting that they could relate to some of the phrases, e.g. ‘Do you run out of breath before you finish a sentence. Others reported that they too had answered Epworth Scores for a good day and had also received low scores and two told that there was no further need to be tested.

Remember that you have a marvellous opportunity to be respiratory tested, free of charge, on the day of our AGM. Saturday September 9th 2006. Even if you do not think you have any problems now you will have a base line assessment for the future. 22 of the 25 tested at the San Francisco PPS Group meeting had figures below the norm.

Dr. Darren Barnes-Heath, A Chiropractor with specialism in Neurology and our speaker last year, is coming to our AGM to hear Helen Kent and meet up with Dr. Betty Dowsett [a Life Member and one of the UK’s prominent ME/CFS Specialists] and has agreed to answer questions. He asks that you put them in writing as soon as possible. Your AGM return slip has an area for questions on it, and we would be so grateful if you could return these, ring or email the information as soon as possible.

The Committee decided to do a smaller issue early with the AGM information as new postal rates on size come into effect on August 21st. It is mainly information from other PPSers because we know how much we learn from reading about someone else’s symptoms and problems. Maybe you have problems like another PPSer but thought you were alone in this. At an East Midlands Strategic Health Authority Meeting this month all seven tables placed Number 2 on the NSF for Neurology and Long Term Conditions list at the top of the list. Assessment and Diagnosis. Nearly all the neurological support groups there reported that the current system of assessment is failing their members and for similar reasons. I am taking this further to other meetings and hope to have more news for you next issue.

Mary Kinane and Denise Carlyle worked extremely hard on preparing the Annual Report and Accounts that are enclosed with this newsletter. Your Committee would like to remind you that all the hours spent on our work are voluntary and that nearly all of us are Polio Survivors with PPS. Like you we live on reduced energy tokens. If any members, or family or friends can spare us a few hours a month to share the workload then do get in touch. We could do so much more with more help.

I was so Lucky. I had a “Full Recovery from Polio”

Something very interesting seems to happen when various discussions come up on the different pps email groups I am on. Some just lend to my stopping and looking at my own polio story focusing on a particular facet or two which in sharing often clarifies it just a bit more for myself while, at the same time, seeming to help other’s clarify points of their own story.

Recently on one such list a writer pondered this thought. How could any of us have ‘fully recovered’ when we are now finding that with pps we are loosing anywhere from bits of this ‘recovery’ to major pieces of it. He pointed out how in his own life he is finding he is getting progressively weaker with the passing years.

Something many of us do not want to think about but if we are honest we can definitely identify with.

So I pondered his question. And in sharing this facet of my polio, post polio, and now PPS story this is what I came to see as a possible answer.

For this sharing I will start at the end of my hospital stay. I will remind those who are familiar with the basics of my stories (and those of you not) that I had polio in the fall of 1950 at the age of 4. I don’t remember any of it and rely on the stories told over the years by my mother and my older sister.

When I left the hospital walking, the doctor lifted my left arm and he and my mom watched as it collapsed to my side. He looked at my mother and told her that polio had destroyed all the nerves and muscles and not to bother spending money on any physical therapy. Instead, he told her to just help me learn to adjust to it. Then, he smiled and said, two things, ‘besides, she is lucky to be walking out of here and very lucky to be alive.’

So, in answer to part of the writer’s inquiry I never received any real physical therapy for my left arm.

Part one of my story… the early years after polio.

My left arm was useless, but my left hand seemed ‘good’. So I used it a lot. I had a rubber ball that I always carried with me and squeezed constantly. this ‘developed’ muscles in the lower half of my arm.

Then, later when I was in high school I insisted on learning to type. Succeeding at that I next insisted on learning to play piano. I started this in my junior year and continued taking lessons right through my college years. Both activities helped me gain lower arm development. Yet, I never did develop any upper arm or shoulder muscles. (And still have not up to this day).

I always had to lift my arm and place my hand where I wanted it to work. [Even now I type with the palm of my left hand resting on the keyboard while my fingers stretch to reach the keys. All the while my right hand ‘floats’ as it should.]

Part two of my story… corrective surgery on my left arm at age 29.

Before the two operations I had an EMG of my left shoulder and upper arm so the surgeon would know what he was working with. This test showed what I already knew. There was almost zip on the nerves in the shoulder and upper arm with the same results on muscles. Actually, there were a few very tiny useless ones hanging

around there.

The first surgery was on my elbow. In order to give me the ability to bend my arm he cut a piece of my elbow bone and pulled my largest lower arm muscle over my elbow and pinned it almost dead center to my upper bone. This shortened my arm further as it no longer can extend completely straight to my side. I didn’t mind this one bit as it was and still is wonderful to be able to bend it.

The second operation was on my shoulder. Here the doctor put in a plate bent over my shoulder and down my arm about three inches using five pins to hold it in place. One is very large and goes deep into my scapula bone. The result is that this is sort of an under the skin brace. It allows me to use my back and side muscles to lift and move my arm. While this is simply miraculous to me in reality it’s actually very limited in what this allows me to do. Yet, I no longer have to place my arm, it simply moves to where I want it to be. It is as ‘close’ to normal as this will ever be.

Part three of my story: now enter my PPS years

This is when I came to find out that my legs had also been affected. This was when I had that awful EMG experience in 1995. This is electrical testing of the nerves by inserting needles and stimulating them electrically and recording the results. This was done by a neurologist. He did both of my arms and both of my legs at the same time. He used both the small needle and the dreaded large Teflon needles.

I was told that I have fewer nerve cells and have over-developed more muscles in my left leg than my right. But the surprise, to me, was that I had the same damage in both my right leg and arm. It was to a little lesser degree, but the bottom line was that I have damaged nerves in all limbs.

When I got to my best recovery from my polio to my mind I only had problems with my left arm. The rest of me was fully recovered. So I got on with my life, pushing myself to the limits and beyond [as so many of us have done] not realizing that the recovery in my other limbs was not complete but enough for me to do what I did. But, since I was able to do so much of what was what normal then you could say I fully recovered. In fact, until PPS woke me up both my doctors and I agreed I had (except for my left arm) made a full recovery. I was lucky.

This is something many pps experts outline in their books and articles. This is part of the problem with pps. In short, these over-extended and over-developed muscles that enabled me to pass so well for so long; these muscles that lent to the picture of ‘full recovery’ are now simply wearing out.

It is why learning to pace and conserve is the key of my life today. It is why I have been using a power wheelchair about 60 to 70% of the time now. I am doing all I can to preserve the strength and ability to walk and stand as needed and to be able to use my good arm for as long as possible. Disuse is bad for us, Overuse is bad for us, it is finding that line in the middle that is important.

My hope is that I am doing well. My hope is that even though, like so many of us I still can see a gradual continuing of weakening that I manage to keep enough to stay independent till the end of my life. But, if I don’t I will be able to accept it better as I know I have done all I can to do it.

The Texan One Armed Bandit.

Ellen Riddle moonshadow2@lonellen.com

Hints, Bits and Tips from other Polio Survivors. They used to wait for me, now I wait for them.

I could lean against a pole, a wall, a building, but finding something to sit on was just heaven, low walls were the best. I never said I was tired or asked them to walk slower.

I was always able to keep up with them in the beginning but soon would be a couple of steps behind, when they realized that they would stop and wait or walk back to me and we would start out again at my pace. But soon I would again be behind them. I do remember being angry at myself that I could not keep up, but they never showed by word or gesture that it bothered them to walk at my pace or to wait for me to catch up.

Now in my chair I am the one who has to slow down and go at their pace, and it is so hard and frustrating. I think my friends and family were fantastic in the way they never showed their frustration. Margaret Campbell.

People rushing in to help

I fell more often due to my brace leg slipping on something. Once I was down, it was always a problem when people came over to help, and tried to pull me up by my arms. I learned quickly to ask them to please release my arms and assured them I was okay (even though I wasn’t always). I had to get myself up even if it wasn’t too good looking to do… bottom up first (probably why I started wearing slacks more and more).

It’s the same with doors when I had to open them myself, and some kind hearted soul trying to help, pulled it out from under me…making me fall, unless I caught myself. It took a lot of learning to keep people from helping too much, but it also took some practice to ask for help (especially now with PPS when I really need the help).

With the onset of PPS, I found standing to be agonizing, and the scooter to be wonderful because now I always have a seat and do not have to hunt for one all the time. Jann Hartman. [now in Seattle]

‘I know how you feel’.

One reason I feel that I get comfort from other pps-ers agreeing with how I feel, when what has happened etc is that they ARE in the same boat with me. When someone who isn’t, who I see as ‘normal’ tries to identify with me, too often I go immediately back to when I was a child and got the pats on the head ..’there there its really ok’. type thing. Even if they have similar pains or fatigue I am more ‘suspicious’ of their saying they understand. this isn’t fair to them. but there it is that is how I feel, and like so many of us I go to great lengths so they don’t know I feel this way at all.

I think it is also especially hard to be honest with anyone in a white (medical) jacket as we were praised so much for being that good non complaining solider as children. It is difficult to get it through on a deep gut level that letting them know we hurt is not complaining, whining or being weak. For me.. often I don’t even let myself know how much I hurt. I am very good at psyching my pain to the background and ignoring it. In some ways this is a good thing (I need less pain

killers) but in many other ways it can be more harmful than good.

I find before I go to a doctor I have unpsych my pains. I have to allow myself to feel them so I can tell them what is really going on with me. Those health professionals who know me well can see it in my face/eyes, but most don’t.

I was never taught how to fall, as those around me as a child blamed it on my being lazy. Instead I had to learn not to fall. Somehow I did. Now, whenever I feel the least bit unsteady or overly fatigued, I use a cane or hang onto someone, or use my wheelchair, whichever is nearest.

Oddly enough for not falling much after the age of 12 or so (except for going up stairs which lasted many years longer). I have a deep seated fear of falling. Ellen Riddle.

How much of our body was affected?

Today, after three early mornings and a visit from my sweet but tiring granddaughters, I absolutely believe that not one muscle in my body was unaffected. Even my eyelashes are tired! Millie Malone.

Wheelchair bound.

• Wheelchair-bound. “This is the worst tabloid-speak phrase. Are pedestrians

classed as shoe-bound? Are cab drivers taxi-bound?”

• Wheelchair-bound is used in the press all the time – usually when a wheelchair

user has been swindled in their own home by a phoney salesman. The Press

does not do compassion well.

• As far as I know there is nowhere called Wheelchair, so how can you be

wheelchair-bound?”

• Wheelchair-bound is beaten only by ‘confined’ … (to a wheelchair). It sums up

people’s fears that disability is indeed a confinement, and this in itself gets in the

way of acceptance. I’m only bound to my wheelchair when I ask to be tied up on

a Saturday night, so long as my partner has the feather duster handy!

• “My wheelchair does not ‘bind me’; it frees me.”

• “I want to shout out loud, I am wheelchair-independent. I am wheelchairliberated!” Marsha Coleman

Kitchen tip

A pull-out shelf can be installed below a wall oven or microwave with a SideHinged-Door. This helps wheelchair users to insert or remove items from the oven and partially protects them from spills during the process. Marsha Coleman

How do you cope with phrases said to you?

Life is tough moving to wheels where once you used to walk. So it is not surprising that we find it a little difficult to answer those well meaning folks who say things like, “You really do manoeuvre that thing well”.

On one of the polio lists many comments came back as to things you could say, and had said, and some were really funny. One lady stopped us in our tracks when she said that “surely most people meant well but just had a hard time in phrasing something. At least they have spoken to you.” Hilary Boone.

Mary McCreadie’s Kitchen Saga

Why is it, that immediately you have a big project to contend with, everything else seems to either go wrong, happen at the wrong time, or generally make life even more difficult than usual?

I am the Members Email List Facilitator so those of you on the Internet will know that I was given a Disabled Facilities Grant to make my house wheel-chair friendly. The main problem being the step down into the kitchen. It took a great deal of effort to get the grant sorted out and agreed, and 8 months after getting the OK, work was finally able to begin. I hope the following will help others of you who may be considering getting such a grant, to remember to get EVERYTHING in writing, all i’s dotted and all t’s crossed, and make sure that every eventuality is accounted for.

I was extremely lucky to be able to have the builders I wanted to do the work – heaven knows what state I’d be in now, if the tender had gone to anyone else! The job entailed ripping out my existing kitchen, and raising the floor by 6 and a half inches. Not too bad so far…..but the back door and window also had to be taken out, the lintel raised by the same amount, and a new door and window put in. As the electric meters were installed above the original back door, they had to be moved. Nightmare! The electrical work somehow managed to involve every single room in the house – carpets and floorboards up everywhere – and even though these were the tidiest builders you could wish to have in your house, the mess was unbelievable! After that, the door into the hallway had to be widened considerably, and then the kitchen walls made good and decorated, before the new kitchen units were installed.

And that’s where the problems (apart from the sheer difficulty of coping with all the noise, lack of electricity and mess) started. It had been agreed (verbally – and therein lies the problem) that it would be not be possible to re-install the old units – especially as I had a lot of high-level cupboards which I could only reach with extreme difficulty when on my feet, and would be impossible to reach from a wheelchair.

It was just as the builders reached this point in the work that the Man from the Council arrived. Now the chap I’d been dealing with prior to this was very helpful; he truly understood the difficulties and was more than happy to agree the necessary new units. This new one informed me that my original chap was on long-term sick leave, and that he was taking over, and was decidedly miffed that he ‘had to do someone else’s work’. Very much looking down his nose at me, he looked over the job so far, and pronounced it excellent. Then he dropped the bombshell. Apparently no actual figure for new kitchen units had been specified in the Schedule, and therefore I could not have ANY new units. He insisted that I have the old kitchen put back – even the sink! “Nothing wrong with it – perfectly OK for you.” The fact that it had only been kept operational by the nifty addition of hose pipes, and shifted around daily – sometimes even outside! – and had been used as a repository for everything from hammers to drills, screws, nails, bags of plaster and everything in between did not seem to register. I was absolutely furious. Perfectly OK for ME? Why? Does a disabled person somehow not know the difference between a decent sink and one that has been completely wrecked? And does a disabled person need fewer cupboards than an able-bodied one? Then he said that on consideration, he

supposed I could have one cupboard replaced, but that the old units still in one piece (a small cupboard and a drawer unit) would be perfectly all right to use. As it was impossible to match the doors on the one new cupboard I was so graciously being given, I would have to put up with odd ones. I was completely devastated. To have the floor raised was wonderful – but at the expense of not having a functional kitchen at all? And with no warning? I immediately rang my OT (Occupational Therapist) who had been out to see me the week before, and had said how thrilled she would be to see my new kitchen, and was totally thrown by the way she completely back-tracked and said it was nothing to do with her. In the end, I had no option but to buy the new units I needed myself. My builder was fantastic to say the least – the nonsense with not getting a proper go-ahead from the council meant that all the other work had been done, and there would have been nothing for them to do unless we could get the new units quickly. He pulled out all the stops, went and fetched the units instead of waiting for them to be delivered, and got them installed in double-quick time. Knowing that money is a real problem, he has let me have them at cost-price. Even so, paying for them will mean that I have to tighten my belt for the best part of some time to come.

So the upshot of it all is, I have a beautiful new kitchen, and a completely level ground floor! Absolute heaven! I’m still a little short on space, so I have to dispense with anything not absolutely necessary, but it is a kitchen that works for me in my electric chair. The work surface level is two and a half inches lower than normal, which makes it very easy for me to reach into the sink, or to the back of the work surface, yet is high enough to be easy to work at when I am able to stand, and also to support myself on. I have drawer units where most people would have cupboards; I have two ‘pull-out’ units for easy access; two enormous deep drawers under the hob, and a normal cupboard under the sink. I also have an ordinary corner unit. I can’t reach the back of it, so I shall be storing things I don’t need very often in there, and will probably have to wait for someone to get things out for me when I do need them. Interestingly, the much-vaunted ‘train carousel’ which can be used in these corner units, and which the manufacturer’s make so much of for disabled people, I found to be completely useless. There is NO way I can actually get close enough to the thing when I’m in the wheel-chair to actually get anything out! Ah well…..!

There was one problem – my washing machine would not have fitted under the lowered work-surface, and I have no outside place I could put it. To get over this, my builder has made a sort of ‘mini utility’ room for me under the stairs! Talk about ingenuity!

In the midst of all this mayhem, I had a bit of a relapse from an operation I had a couple of years ago, which meant that I had to go and stay with a friend – one simply cannot be ill when there are builders in the house. But I’m almost back to my normal self now, and I have another 4 weeks to recover before the builders return to start on the outside work of providing me with a ramp to get me down into my garden. Won’t it be wonderful not to have to carry my cup of tea out through the front door, round the side of the house and through the back gate in order to sit at the patio table any more? I can’t wait!

Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk

The old Chinese proverb ‘Be careful what you wish for – you might just get it’, struck a chord with me the other day. When I was young, I used to wish that I wasn’t so big and tall. Why couldn’t I be a delicate 5’ 1” or so and 6 stone in weight to go with it? Well now I have my wish in part…..in my wheel-chair I’m only 4’ 7” – pity the genie forgot about the 6 stone bit!

E-mail Forum

Huge apologies, but it has simply not been possible for me to write the usual E-mail column this time, due to both building work and illness. The list has been very busy, with lots of ideas, information and a bit of humour too, which is really good. Look out for an extended column in our next issue.

Mary McCreadie mary.mccreadie@lincolnshirepostpolio.org.uk

Two patients limp into two different American Medical clinics with the same complaint. Both have trouble walking and appear to require a hip replacement. The first patient is examined within the hour, is x-rayed the same day and has a time booked for surgery the following week. The second sees the family doctor after waiting a week for an appointment, then waits eighteen weeks to see a specialist, then gets an x-ray, which isn’t reviewed for another month and finally has his surgery scheduled for 6 months from then.

Why the different treatment for the two patients? The first is a Golden Retriever. The second is a Senior Citizen.

Translating Medical Terminology – The following email enquiry was received… I suffer from sequels of poliomyelitis. I’m writing you since in Italy the orthopedic ateliers have given up making laminated outhouses for polio sufferers. The reason is that polio is a disease in extinction and they made up their minds not to invest in this activity. [A serious enquiry and one we know only too well, but what a wonderful visual picture. If you know of anyone who can draw cartoons for our newsletter, please contact us]

This exercise is suggested for seniors, to build muscle strength in the arms and shoulders. The article suggested doing it three days a week.

Begin by standing on a comfortable surface, where you have plenty of room at each side. With a 5-lb. potato sack in each hand, extend your arms straight out from your sides, and hold them there as long as you can. Try to reach a full minute, then relax. Each day, you’ll find that you can hold this position for just a bit longer. After a couple of weeks, move up to 10-lb potato sacks. Then 50-lb. potato sacks, and then eventually try to get to where you can lift a 100-lb. potato sack in each hand and hold your arms straight for more than a full minute.

Once you feel confident at that level, put a potato in each sack.

Old Harold In The Hospital – Harold was an old man. He was sick and in the hospital. There was one young nurse that just drove him crazy. Every time she came in, she would talk to him like he was a little child. She would say in a patronizing tone of voice, “And how are we doing this morning”, or “Are we ready for a bath”, or “Are we hungry?”

Old Harold had had enough of this particular nurse. One day, at breakfast, Old Harold took the apple juice off the tray and put it in his bed side stand. Next, he was given a urine bottle to fill for testing. So, you know where the juice went!

The nurse came in a little later, picked up the urine bottle and looked at it. “My, it seems

we are a little cloudy today .” At this, Old Harold snatched the bottle out of her hand, popped off the top, and drank it down, saying, “Well, I’ll run it through again. Maybe I can filter it better this time.” The nurse fainted! Old Harold just smiled!

Never take a pill that has more side effects than you have symptoms

Excerpt from Kathleen Burrell’s chronicle of her life. CHAPTER ONE

MY CHILDHOOD

I was born on 14th February 1912, a healthy little girl and the only daughter of George and Edith Burrell. I had three older brothers, Frank who was born nine months and two weeks after my parents were married, Stanley, who followed two years later and Artie who arrived two years after that. I came hot on his heels a year later. With three elder brothers I was probably in danger of becoming a tomboy, as I followed them around trying to do all the things they could, when at the age of five and a half I was struck down with poliomyelitis, or infantile paralysis as they called it then.

We lived in a small village in Lincolnshire called Bicker, nine miles from our nearest town. of Boston. Bicker was, and still is, a pretty village with a stream running through it, and we lived at Sycamore House, which is near the centre of the village. However, when I was young Bicker was rather isolated having no railway or bus service and very few people had cars, so my father earned his living with a carriers cart which he took to Boston twice a week on market days. Mother would go with him and their route took them via Swineshead, Drayton, Blackjack and Kirton End, arriving in Boston by the London Road and High Street. Father would also collect along the way, both passengers and goods that people wished to sell on the market. Sometimes people would give him lists of articles they wanted my parents to purchase for them. But when the First World War started and my father was called up, he sold the carrier’s cart as he expected to pass his medical and be in the army for the duration. However, father had had rheumatic fever when he was young and the doctor told him he would not pass the medical. Father was now so fit and well and confident of passing it that he had a bet with the doctor that he would pass. Unfortunately he lost his bet! However it was fortunate for the rest of the family in that he did not have to leave us to go to war.

I think as a small child I was rather shy and timid, but at times would like to ‘show off’ especially when I had learned a new nursery rhyme. I liked to climb on the table, which I think was my stage, and recite with eloquent actions and facial expressions, to my audience who were usually some visitors or anyone who might be around and would be kind enough to listen to me. I think I was the

original Shirley Temple with my curls and bows of ribbons in my hair. My masterpiece was ‘The Postman’:

Hurrah! For the postman who brings us the news, What it must cost to pay for his shoes,

Red stripes round his hat with clothing to match it,

He walks many miles each day of the week. If he lost any letters My! wouldn’t he catch it!

I ask you, who could ask for better entertainment?

My memory of happenings around this time seems to have been deleted by my illness and largely what I know now is of hearing Mother talking of them. One event she spoke of was when she took me to see a 1920 German Zeppelin that had been brought down by the British in some way. For many years we had a small piece of aluminium like metal that she brought back from the wreckage. She had taken me to stay for a few days with her parents at Barnet 12 miles north of London. The Zeppelin had come down some time late in the war at Potters Bar, approximately 2 ½ miles away. A pushchair was borrowed, she and some of her sisters decided to walk there and take me with them. I wish I could recall this event of such importance at the time. I remember very little of the First World War but I do recall my brother Frank saying how very frightened we all were when the enemy planes came dropping their bombs, sometimes not very far away, and he said we used to scramble under the table.

There was another occasion when I think I may have saved Artie’s life. I was sitting in my pushchair on the bank of the stream that meanders through Bicker village and which ran opposite our house, when Artie, who was playing near the water’s edge, fell in. He had probably been

catching sticklebacks, but I’m sure he didn’t intend to get quite so close to them as he couldn’t swim. He was soon being dragged down, so I called for our father who was in the yard and he quickly came and pulled out a very wet and frightened little boy. However, I received no medal for my bravery!

I was five years and eight months old when my mother, one Monday morning in 1917 getting me up to go to school, found that I was unable to stand! The family doctor was called and he diagnosed the trouble as rheumatic fever, as the symptoms were similar to polio. However he soon changed his mind when my condition worsened. Also there were other children in the village similarly affected and it was eventually realised that we were all suffering from polio. At the onset I was semiconscious for nine days and completely paralysed from the neck downwards. After some weeks a little strength returned and I was able to feed myself. By Christmas I was able to sit up for a while. A little massage was given to me by the district nurse every day but this was the only treatment I received for five months. At this point it was decided to send me to the Cottage Hospital in Boston, where I stayed for six weeks. There they gave me mild electrical treatment to no avail. I remember very little of my stay there, except that I had my sixth birthday whilst there and that day I was taken around the men’s ward and made quite a fuss of. I am almost certain that they were wounded soldiers as some of them were wearing uniform. On my return home our doctor asked my parents for permission to send me to a London hospital, but as the Great War was still raging and London was being bombed, including the hospital to which I was to be sent which had already received some damage, they refused. However they said they would like me to be admitted as soon as the war was over.

On my return from Boston Hospital I spent some time each day lying on our couch with my paralysed leg tied over the high end, taking the weight of my body on the lower end. This was done in the hope that it would straighten my bent knee, but of course it didn’t. I had an operation to correct this when I eventually reached the London Hospital.

For a short while towards the later part of the war, retired schoolmasters were called out of retirement to release younger men for war duties. This had happened at Bicker, which resulted in Mr Hopkins from North Lincolnshire being billeted with us, for I believe about six months. By this stage I could sit up long enough to play board games. Mr Hopkins was a very kind gentleman and spent hours teaching me to play patience etc during the evenings.

Another example of how different things were then than they are now, was when at the age of fourteen and eleven respectively, my brother Stan and I had our adenoids removed by Dr Morris, on the dining room table. This was the same table on which my father had had his teeth removed at an earlier date!

After some time my mother had found a way to get me around the house without lifting me. I was much improved in strength, especially my right leg and arm, but I was getting too heavy for mother to carry me bodily for any distance so she had to devise an alternative method of moving me about. I was able by now to put most of my weight on my right leg, balancing with difficulty, and she would stand behind me, put her arms around my waist and sort of ‘hopscotch’ me along, my right leg taking my weight after each jump. This was rather ungainly and slow, but it was exercise for me and also saved her taking my full weight. Eventually a wicker pushchair appeared from somewhere and she was able to push me around the village in that. From then on I managed to lead an almost normal life at home, and although I could not walk about the house I spent many happy hours sitting on the hearth rug playing with my toys, but I still needed a wheelchair in the street.

After the first World War ended nothing was done about sending me to a London hospital and it was only after my father confronted the doctor in no uncertain terms that a place was found for me. I was very lucky to have such caring parents who were determined that I should have the best treatment available to me at that time. The hospital in question was called The National Hospital for Paralysed and Epileptic Patients, and it was in Queens Square, London. Each journey to and from this hospital is completely obliterated from my mind. We must have gone by train from Donington Station to Kings Cross, as there was no other means of travelling that distance in those days. I know

both my parents went with me, and we took a taxi from Kings Cross to the hospital. The taxi driver, presumably thinking that as it was a child he was taking, it must be Great Ormond Street Children’s Hospital we wanted to be at. It was not until I was already undressed that it was found that we were at the wrong hospital! Fortunately the National Hospital was virtually across the road.

I don’t remember saying goodbye to my mother and father, like many unpleasant things in life one chooses to forget them, but I’m sure I was a very unhappy little girl at being left by them so far away from home. However I’m sure I would have settled down after a few days ready to make the best of it, as I understand I was always a happy child by nature. As it was to play a major part in my early life I think I should describe the National Hospital and my life there, mainly to show the difference then and now in hospitals. It was an impressive Victorian building with large wards each with a coal burning fire at the far end. There was a cot either side of this fireplace and eleven beds for women down each side of the ward. There were no unisex wards in those days! I did not see any male patients at any time, I think they must have occupied another wing. A rather strict matron was in charge and everyone was in awe of her. She was very kind to me though and once invited me to her sitting room for tea, so that I could play with her cat which had had kittens. I think she was in charge of the whole hospital. There was a staff nurse for two wards and two other nurses to each ward. The floors were bare boards which were scrubbed once a week by two maids on their hands and knees. Everywhere was very much ‘spit and polish’.

I was lucky as regards food as my mother sent me a food parcel most weeks, which included butter etc and also boxes of eggs. My grandmother, who lived only twelve miles away, visited me alternate Thursdays and brought me jars of jam etc, otherwise the hospital menu consisted of breakfast and tea which was a thick slice of bread and margarine and a small cake. Dinner most days but not Sunday, was sloppy mince, cabbage and potatoes with milk pudding to follow – this latter I detested – and this menu seldom varied. I disliked milk pudding so much that it eventually started to make me retch and finally one day I was sick over it. One of the other patients who was fairly mobile and liked to do little jobs around the ward was going to take my dish into the kitchen, when the Ward Sister, who was nearby and had seen what was happening, told her to scrape off the sick as I must eat the rest of the pudding! This lady, however, was determined that I should not have to do this and promptly ignored the Sister and took the plate to the kitchen where she rinsed it down the sink. The result of this little incident was that, although I still had to have milk pudding every day, I was allowed to have a spoonful of my grandmother’s jam with it, which helped a bit with the struggle I had to get it down. You can see what the discipline was like!

Early on when I first went to that hospital I lost my little gold charm bracelet which my mother had given me when I was quite tiny. It had never been off my wrist since the day she gave it to me. A nurse was about to bath me one day when she told me to take it off, which I did. She put it in her uniform pocket and I did not see it again. When questioned she denied ever having seen it. One of the charms was of the Lincoln Imp and was rather special as my mother’s friend Ivy Dawson had given it to her to put on my bracelet only a few days after I was born.

Every day our beds were tidied between 10am and noon, and again between 2pm and 4pm. Everything including toys, knitting, books etc had to be put away in our lockers. Nothing was left on the locker tops and the bed clothes were tightly tucked in with no creases. This was in preparation for the doctor’s visit. On two of my stays in the hospital my doctor was a kindly man whose name was Dr Tooth. There was a park on the opposite side of the road to the hospital called Queen’s Square – the Queen in question being Victoria – and I was taken with some other patients to sit on a bench for a while when the weather was good and a nurse had time to take us there. The rush of the traffic fascinated me as it was quite different to what I was used to in Bicker or Swineshead.

If you want to read more of this fascinating story, go to www.lincolnshirepostpolio.org.uk/downloads/kathleenburrell/

If you do not have access to the Internet then drop us a line and we will post you a copy for a small charge of £1.50 to cover paper and postage.

Dysphagia by Carol Bratcher, Speech Language Pathologist. This presentation was given in 1991, but is worth an Encore.. Carol Batchers father is a polio survivor.

There are three phases to swallowing: oral (mouth), pharyngeal (throat), and esophageal (tube to stomach). Two things are important: the tongue and larynx (voice box). If either is weak, there is a problem swallowing. When the bite goes into the mouth, as you’re chewing, your tongue is moving the food to each side of your cheek to form a ball. If your tongue is weak, you already have trouble swallowing, moving the ball to the back of the throat and forcing the food ball down the esopahgus (slam dunk) – the tongue, not the muscles of the throat, as one might think. The throat muscles then close the door behind the food so it doesn’t go back up. When this process doesn’t happen smoothly, there is a swallowing problem.

The type of polio you had, treatment, your history, and breathing should be evaluated if you are choking. A video fluoroscopy is a very good test for this evaluation. In the swallow, we want to make sure there is no aspiration (food entering the airway). When a person truly chokes, something blocks the airway. As you swallow, breathing stops. If the airway is blocked, you have trouble breathing again.

Swallowing is a muscular function. The tongue is made up of 8 muscles. It must function in an organised manner. Your whole throat, uvula, soft palate, voice box, vocal cords, 20-30 muscles are involved in the swallow. The tongue must be strong to push the food through or it will stop along the way in ledges and pockets like the pyriform sinus and epiglottis. Something ‘stuck’ in your throat may well be in one of those pockets. Normal swallowing takes less than a second. If it takes longer, it’s a sign the muscles are weak. Sometimes in polio one side of the swallowing mechanism is weaker than the other, one side is going down faster than the other.. one side is doing all the work.

If you fatigue at the end of the day, eat a light supper, take smaller bites and wash down ‘the pockets’ by alternating solid and liquid. Fatigued and weak muscles increases your chance of difficulty. More than half the problems of post polio swallowing can be improved with proper diagnosis and instructions.

Reprinted from FLORIDA EAST COAST POST-POLIO SUPPORT GROUP May/June 2006 Newsletter. 12 Eclipse Trail / Ormond Beach, FL 32174 386-676-2435 / e-mail address: bgold@iag.net

Editors Note. Once again it is important to self assess so that you can give detailed information to your health professionals. Write down what happens and take this with you and remember that we can do things once, twice and more times before our weakness sets in. It is up to you to tell the health professional when this happens so that they can test you to that level.

Have you changed your eating pattern; have you stopped eating certain foods; do you eat more slowly; pause between swallows; have a drink handy to help food down; sometimes feel as if a tiny crumb of food you just ate is sitting right on the edge at the back of your throat almost as if someone is stroking it with a paint brush; choke when you burst out laughing; aspirate bits of food so that you have to cough and cough till you bring it up again; etc. N.B. The last line above.. can be improved with proper diagnosis and instructions.

Annual General Meeting

Saturday 9th September 2006

Memorial Hall, North Hykeham, Lincoln, Lincolnshire

Doors open 10.00 a.m. AGM starts at 10.30 a.m. Buffet Lunch at 12.00 followed by

MAIN SPEAKER Helen A. Kent, BS, RRT,

Owner of Progressive Medical, Carlsbad, California, U.S.A. 92010 www.progressivemed.org

Helen will be speaking about the problems experienced by people who have neuromuscular conditions:-

1. What tests should be done and the information they provide

2. Mechanical ventilation equipment being used today

3. Support that patients should expect.

Helen is very passionate about her work, helping neuromuscular support groups in California and patients with various types of neuromuscular problems all over the world.

Her holiday plans bring her to the UK in September and she offered to fly in a few days earlier to speak to our members. She is offering all attendees some free tests which will show if they need/do not need to see a Respiratory/Sleep Consultant.

Tea, Raffle and Questions & Answers. Please submit questions, even if you cannot attend.

Doors close at 5.00 p.m.

N.B. There will be Friday and Saturday Evening Get-togethers.

All members attending who would like to be tested please

return the enclosed slip as soon as possible so that we can assist Helen in planning her day.

B C

Kathleen Burrell from Lincolnshire – our oldest member at 94 years of age – wrote to tell us all about her ‘Helpers’. She looked at aids on offer but they did not fit the bill for her, she cant grip very well, but she can pull and push, so she made her own. They looked like good ideas so we asked if we could visit and take photographs. We met yet another determined polio survivor who not only showed us round her lovely home, but gave us a copy of her ‘amazing llife story. We enjoyed it so much we asked if we could have permission to share it with you and put on our Website. Go to page 11 to read some of Chapter One.

Here she shows us the three helpers she has made from wire coat hangers. [A] is for pulling the door to behind her and hangs on the radiator in the hall.

In her hallway there appears to be closed curtains over a window [D] but it is not a window. They hang over her open bathroom door. Now she has privacy and can get in and out easily in her electric chair.

At the bathroom sink Kathleen can only reach the tap on the right so she thought about it and came up with [B] which has a small loop that fits nicely over the left hand tap. She can pull it ‘on’ and push it ‘off’ easily and then tuck it under the right hand tap when not in use.

She has a table in the lounge with all the bits on it that she might need during the day. She made [C] with a hook size that fits round the items that stay out of the way until she needs them.

[Our youngest member, aged 9 will tell his story next issue.]

Linc Pin Volume 5 Issue 10 Read More »

Linc Pin Volume 5 Issue 9

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 9 — June 2006

WebSite – http://www.lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

TO BREATHE we use Lungs, Diaphragm, Intercostals and Accessory Muscles.

Changes happen slowly and become our new norm – we must report the changes.

• Do you run out of breath now before finishing a sentence? • When you cough do you have to do this softly as it hurts your rib muscles to cough loudly? Ask to have your chest expansion measured on repeated breaths. • Do you have to pause for a few seconds between mouthfuls of food or drink? • Did you turn over in your sleep but now do you have to wake to a higher level of consciousness to physically turn over, and how often do you do this each night? • In bed – have you noticed you sleep in one position far better than any other?

Diagram shows Diaphragm and Accessory Muscles

Do you have weakness or stiffness in any of these muscles?

Do you stop breathing to concentrate on achieving an action? If you do, is this because you are using accessory breathing muscles to assist your weak muscles to achieve that task?

See Back Page

Scanlan, CL, et al. (1989). Egan’s Fundamentals of Respiratory Therapy.

CONTENTS. Page 3 – Message from the Chair Page 4 – Editorial

Page 6 – Do you have any ‘dropping off to sleep’ issues? Page 7 – Do you need respiratory testing? Page 7 – Personal experiences from Richard, Gladys Swensrud and Larry Kohout Page 11 – To breathe or not to breathe… Informative article with explanatory boxes taken from Dr. Oppenheimer’s ‘The evaluation and management of Respiratory Disorders’ Presentation at the San Francisco Bay Area PPS Group / Kaiser Permanente PPS Conference in 2003. Page 24 and 25 – Excerpts from two medical articles. 1. Long Term Ventilation in neurogenic respiratory failure

Robin S Howard and Craig Davidson. J. Neurol. Neurosurg. Psychiatry 2003;74,24-30.

2. Pulmonary dysfunction and its management in post-polio patients.

John R Bach, Margaret Tilton—NeuroRehabilition 8 (1997) 139 – 153

Page 26 and 27 Email Forum and letters Page 28 AGM Info.

Donations: Jim & Jenny Rayner, Sylvia Fortune, John Doohan, Sue Pownall. Eunice Stone, Kay Preece, Diana Nash, Yvonne Webb, Ann Stone, Norman Jones, David Shaw, M. Horton, Pamela Minnitt, Roy Prentice, Judy Barter, Barry and Olivia Branston. Di Brennand, Pauline and Robin Butler, Denise Carlyle, Sheila Dunnett, Margaret Edmonds, Hilary Boone, Pat Hollingworth, Mary Kinane, Mary McCreadie, Di Newman, Chris Salter;

and from USA, Robert Price, Jean Hill, Beverly Buccellato, Lena Jennings and Susan Sonski.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – September 2006

Articles for publication 4th August by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Email List Facilitator – Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Dear Readers,

This is an important time for the organisation, and for our members in the UK, some of whom are also members of the British Polio Fellowship. Many of you will have followed recent developments in the debate about PPS and how services can and must improve so that more polio survivors can benefit from further research. At the time of going to press, we have been invited to collaborate with the BPF in the context of an Expert Panel on PPS. It is our considered belief that most of our members would welcome a more formal collaboration with the BPF at this time, so we will be keeping you posted on this issue.

Numbers attending the AGM have been decreasing. We wondered if this is in part due to the time of year, late October. Many of us find travelling in the colder months difficult. With this in mind, we have changed our financial year to run from April to March. This means the Annual report and accounts can be finalised earlier in the year and we can hold future AGMs in the warmer months. We did not get confirmation from the Charity Commission in time to send out information for a June meeting so this year we have fixed the date for September 9th. This year’s accounts will therefore encompass the shorter period August 2005 to March 2006. Thanks go to Denise who has been working hard behind the scenes to complete the accounts and find an external examiner.

We are grateful, as always to Sheila in Lincoln who helps us keep in touch with local contacts, especially when Hilary is in the US, and are pleased to confirm that Sheila has secured the Memorial Hall in North Hykeham as a venue. Our main speaker for the afternoon, Helen Kent, will be here to address current issues in respiratory assistance.

Members of the Operations team continue to do trojan work behind the scenes, bringing up topics suitable for debate, and keeping the Subscriber’s List active around a variety of topics. If you have recently acquired a computer this is a good time to subscribe to our lively members email list. All contact details appear on the inside front cover, in case you wish to subscribe.

Best wishes, Mary Kinane, Chair.

Contact mary.kinane@lincolnshirepostpolio.co.uk

Editorial by Hilary Boone.

Yes folks, Richard and I got married on the 25th March 2006 in a wonderful native American ceremony in the ‘Plaza’ of the Portavant Temple Mound, Emerson Point Preserve, Florida, near where we spend our winter months [except its hotter than the UK summer]. We chose a native American ceremony because of our love of re-enactments and it was performed by a very dear friend and fellow Florida Frontiersmen of ours, Pat Walking Owl Murphy a Reverend of the Métis tribe. As we married during the Manatee County Heritage days members of the public were coming into the clearing to see the time line of re-enactors. From early Ameri Indians, through the times of the De Soto Spanish Landings, Pioneer times of the early 1800’s [the time we do], and Civil War Re-enactors of the 1860’s. When you read the piece below from our Wedding Invite you will see why this place is so special. We married near the shore of the River between the Temple Mound and a huge cross on the opposite shore line.

Taken from our Wedding Invite and excerpted from Naturalist Karen Fraley, ‘Around the Bend Nature Tours’ http://www.aroundbend.com/

Our haunting walk through the woods ends abruptly at a clearing. To our right is the Manatee River and to our left is the largest known temple mound on Tampa Bay. The trail takes us through this 1,000-year-old Indian village. Interpretive signage helps us imagine what life was like then: “The heavy growth of trees you now see would not have covered everything: The shell mounds would have gleamed white in the sun, topped and surrounded by thatched houses. Smoke from cooking fires drifted skyward as people worked at their daily tasks and children played. Canoes of hunting parties landed along the shore to unload the day’s catch, while the air filled with an irregular rhythm of conch shell hammers tapping open shellfish.”

We look up and imagine the chief and shaman leading a ceremony for the villagers below. For reasons unknown, the ritual buildings on top of the temple mound would be burned down regularly. The people would cover the mound with another layer of earth and shell and erect new buildings. In this way, the temple mound grew over the years in size and elevation. The native people started building this mound around 800 A.D. and abandoned it about 1500 A.D. A recent rain has turned the resurrection fern a lush and verdant green, carpeting the branches of the giant live oaks that protect this ancient temple. We are reminded that, as visitors here, we are guardians of both the past and future. We try to identify with the spiritual importance and natural order that the passage of time has given to this special place.

We got a big surprise when the Press turned up and we made the next days issue of the Sarasota Herald. We camped out that night on a loaned feather bed in our tent to the sounds of the night… including one of the Civil War horses getting his hoof caught in his lead and panicking and kicking a large plastic bucket to pieces. The next day we demonstrated items that we use in our re-enactments to the public that visited. At about 4p.m. with help from the other re-enactors we packed our belongings drove home and guess what… crashed out and spent the next two days catching up on energy levels. Honeymoon will come later when we have saved up enough energy……

This issue, Number 57, of the LincPIN I have devoted mostly to Respiratory Issues. I know that some of you may not want to read all the information but it is important that we continue to highlight the issues that more polio survivors are asking us for help on. These issues are being discussed on other polio lists, highlighted in others newsletters, so its not just us, it’s a worldwide problem. How long are we prepared to be told there is nothing wrong with us when there is, because the form of testing used did not pick it up?

When we eventually take the plunge and report symptoms to our health professionals stating that we think we might have breathing and/or sleep/swallowing issues and get told that ‘if you did not have bulbar polio then you won’t have problems’, ‘the figures are all within the normal range’, etc. you begin to wonder if you are losing your mind. After all it’s taken months if not years to admit the problems/symptoms to yourself, let alone a medical professional, and now you are told you don’t have them.

I reported on my sleep study and respiratory lab testing in the December issue. In February’s issue added an article from Post Polio Health International, Ventilator Users Network. When Richard started having more problems we asked to be referred to a pps knowledgeable physician. Richard was told ‘not expected to have any problems if you were not in an iron lung, and from seated testing only his diaphragm was strong. Luckily the health system works more quickly in the USA and because of abnormal oximetry testing at home [25% of the night under ventilated] and ‘apnoeas per wife’ [doesn’t that conjure up a marvellous picture] he managed to get a cancellation sleep study. The Doctor rang next day to say ‘you are right he does have severe problems and I have ordered a bi-level machine for him’. We are so lucky to have internet contacts across the world and were able to call on many friends for help. Gladys Swensrud from San Diego, and Larry Kohout from Minnesota stepped in with information and full explanations of all the terms. We had to go through a very fast learning curve. Gladys put me in touch with Helen Kent, the Owner of Progressive Medical in San Diego. This led to the first machine being changed for a better one, and the settings adjusted from the downloaded information. Result, Richard is sleeping better, he has more stamina during the day, and less muscle cramping pain. [NOTE, just got email regarding knee replacement for a non polio, statement by therapist – that holding your breath while doing stretches or exercises can give you cramps in whatever you are stretching or exercising.’ Do you hold your breath to concentrate on an action?]

Helen Kent founded Progressive Medical in 1983. Their goal is to ‘wake up America’ to the benefits of better sleep while eliminating the dangers of sleep disorders. They work with patients, physicians and other providers to make them aware of the serious risk of sleep disorders, sleep apnoea and disease-related breathing problems. Their speciality is Neuromuscular Ventilation. They work closely with organisations supporting people with ALS, MS, MD and PPS. As you will see from the back page, Helen is going to speak at our Annual General Meeting and offer all attendees that wish it some simple respiratory tests that will show if you need to take the matter further. Some days life is hard, but the day I got Helen’s email offering to come and help us in the UK was a real boost.

Because of the steep learning curve we had to go through to understand all this I decided to put it all together in this issue. The main article I have put together from the slides and notes of Dr. Oppenheimer’s presentation in San Francisco in 2003. I have added explanatory boxes, definitions of words and phrases, and information from others sources. If you need more help in digesting this, [maybe we should print on rice paper] then please get in touch. You may not need this information now, but you could need it later on. Please do not rely on being told that you are fine, if you think your symptoms match what you read here. Prepare yourself well for your appointments. Ask for copies of your tests and the reports. If you find yourself in the position of NOT having your symptoms corroborated by the tests and/or assessment, then its time to look at all your notes, pick the most important issue and go and see your GP asking for his last appointment. Demonstrate this issue if at all possible and point out anything on the report, test results that you think might have been misinterpreted. Your GP is the best person to case manage you on your journey to better management of your condition.

Do you have any ‘dropping off to sleep’ issues?

Epworth Sleepiness Scale

The Epworth Sleepiness Scale is used to determine the level of daytime sleepiness. A score of 10 or more is considered sleepy. A score of 18 or more is very sleepy. If you score 10 or more on this test, you should consider whether you are obtaining adequate sleep, need to improve your sleep hygiene and/or need to see a sleep specialist. These issues should be discussed with your personal physician.

0 = would never doze or sleep.

1 = slight chance of dozing or sleeping 2 = moderate chance of dozing or sleeping

3 = high chance of dozing or sleeping

Situation	Chance of Dozing or Sleeping
Sitting and reading Watching TV Sitting inactive in a public place Being a passenger in a motorvehicle for an hour or more Lying down in the afternoon Sitting and talking to someone	____________
________________
Sitting quietly after lunch (no alcohol) Stopped for a few minutes in traffic
while driving Total score (add the scores up)(This is your Epworth score)	____
____

I want to highlight a problem for Polio Survivors with this Questionnaire. How you answer these questions could affect how you are perceived to be having problems. If you have PPS and are using aids and assistive devices, pacing and resting and managing your energy levels well then you would be factoring in rests and nap times. Are you working on ten energy tokens a day, seventy a week and planning your life? So if you answer, like we did, for a normal ten energy token day [after all that is most of our days] with very low numbers you get a total low number.

There are events that we want or need to do and we know that they will take up more than 10 energy tokens a day. What do we do, we plan the week ahead. This weekend we can see both days will be 16 token energy days. So we know that the day/s before we need to use less tokens and store a little energy, and we know that come Monday we are going to be more fatigued, have more pain, etc. We ensure the fridge has easy to reheat food in it, we get up later. We sit around and read and watch TV and don’t mind dropping off to sleep. We might go and rest in the bedroom instead of chair in the afternoon. What we can be missing is that this is important information and if you answer the questions after a day like this how high is your score now?

We have just asked a Pulmonologist about this and he says he always tells his patients ‘to answer as if it was your worst day’ e.g. when you have overdone.

Do you need respiratory testing?

If, as you read on, you think that you are experiencing any of these symptoms, then think about how you are going to word this to a health professional. When do they occur; time of day; after doing a certain action – bending over putting your shoes on -do you have more scoliosis leaning further forward as you walk/do an action of daily living, after using up more than normal energy tokens. Do you hold your breath when concentrating on an action. For instance, when you have to climb a few stairs; when you are walking and carrying an item; when you are bending up and down to get items from the dryer and folding the washing; etc.

What we are asking you to look at is which muscles are you using to do an action. Are you using others instead of paralysed or very weak ones and/or are you asking other muscles to assist weak muscles to continue to achieve that action? Are you using accessory breathing muscles to assist? Are you now causing conflict for your muscles?

‘Ok’ your Muscle Team Leader says, ‘she is walking but she has leg muscle weakness, so come on trunk muscles numbers 3 to 7 will you please assist’. Now you stop and pick up the washing and your Muscle Team Leader says ‘oh!, weak arm muscles need more help, trunk muscles 5 to 10 your help is needed’. A minute later Trunk Muscles 5, 6 and 7 call out ‘we need more assistance here, we are struggling she is walking and carrying Grandma’s crockery.’ The Muscle Team Leader does not get the information in time and rather than let her drop the crockery trunk muscles 5, 6 and 7 go to help the arms and that leaves the legs without the extra needed help and they fold and she finds herself on the floor, wondering how on earth she got there.

Factor into this that some trunk muscles are also accessory muscles of breathing and may have their own weakness and we can have major problems.

The following are excerpts from polio survivors own experiences.

Hilary and Richard. Lying next to someone and listening to them breathe and then stop

and then breathe again is tough. Richard had told me that I snored very badly and that I

stopped breathing at times. The way my tests were reported did not corroborate my

symptoms, but I now have more information I will be taking this up again when we return to

the UK. I did not realise how worrying it was for Richard to watch me and wonder if he fell

asleep would I carry on breathing, till I started doing this for him. Recently I have watched

him lying on his back, breathe five times and then nothing—one recorded time was 42

seconds!. In the past when I heard no breath I would just nudge him, not realising the

seriousness of the situation. He now has a bi-level VPAPIII S/T machine – this machine

keeps his airways open and instigates breathing if he stops – his breathing at night has

improved considerably. He has much more stamina during the day and has noticed

considerably less cramping pain in his muscles. [See added note on page 5]

Larry Kohout – [Excerpts From the Fine Art of Breathing, published in full in an earlier LincPIN] Forty-two years passed….. In the early to mid ‘80s, however, I started suffering from overwhelming fatigue, increasing muscle pain. Because of these symptoms, and the evidence of denervation seen by the EMG, my doctors diagnosed PPS. But breathing or swallowing problems were still miles away in my mind. About 1995 I began to realize that I became short of breath after consuming an alcoholic beverage. The realization came slowly, and when I did make the connection the solution was simple: I quit drinking. It was hardly a sacrifice since Cathy, my wife, is allergic to alcohol: the two of us rarely drank. And remember, I didn’t have any breathing problems.

In the late fall of 1999 I became aware, again slowly, that when I was talking I’d often run out of breath before I came to the end of a sentence. Other things began to filter into my consciousness. When I’d exert myself in the slightest, I’d start to pant. I’d feel breathless when I’d read aloud. I was breathless after meals. At the same time I was aware that I was waking up at night on an almost hourly basis. When I did wake I’d often have to go to the bathroom, and so I became concerned about a possible prostate problem, but I didn’t connect this to a breathing problem…..

When I went in to see my PCP [Primary Care Physician} to discuss the outcome of the tests, he told me that the tests were entirely consistent with neuromuscular disease, and there was nothing to be done for it. He did say if things got bad enough, he would put me on oxygen. That’s when the bells went off in my head. I had read an article that talked about the fact that oxygen was a no-no (well – only in very special cases) for people with neuromuscular problems. I went home and dug out the article Oxygen is NOT for Hypoventilation in Neuromuscular Disease by E.A. Oppenheimer, MD, FCCP. Here it said quite clearly that “Patients with neuromuscular diseases who are developing progressive respiratory failure due to respiratory muscle weakness will die unless mechanical ventilation is used.” Opps! Did he say die? Yes, that is exactly what he said. I’d best do some more looking.

Before I get too far, I want to point out an important issue. My PCP had told me that there was nothing to be done for this. That is exactly what he believed. He is not dumb, undereducated, or out-of-touch. He is just like so many other people who work in a particular field; he doesn’t know everything. I later came back to him and told him the results of my search. He nodded quietly and said, “And again, I’ve learned something new.” This is precisely why I believe I must take responsibility for my care, and why I spend so much time reading all I can regarding my condition…..

[Larry has asked me to add a note here – I found a pulmonologist familiar with neuromuscular breathing problems. As it is the transitions are harsh and confusing. It was the pulmonologist who prescribed the BiPAP for me.]

The doctor also prescribed a machine called a bipap for me. A BIPAP is a Bilevel Positive Airway Pressure ventilator. The machine is small and quiet and, in the machine I got, ran on either 110 volt house power or a 12 volt battery. It connects to a mask that fits over your nose and supplies a volume of air that is forced in at a prescribed pressure for the inspiration cycle. It then drops the pressure but still blows air into your nose during the exhalation cycle. The reason for the constant flow of positive pressure is to make sure your nasal passages do not close down, obstructing your breathing.

The very first night I used the machine I only woke up once. My waking problems were not caused by a need to go to the bathroom but by my breathing problems. The doctor had recognized my wakefulness as a symptom of the breathing problem. From that night on I slept through the night with only one or two waking episodes. But I had a sleep study scheduled and I had to discontinue use of the bipap for 48 hours prior to my sleep study. Apparently, use of the bipap (or any other mechanical ventilator) throws off the data that is gathered in the sleep study.

This article is ended here. The full article was printed in LincPIN.

Larry Kohout, email:- lkohout@mn.rr.com

Richard E. Van Der Linden email:- PPSMan@aol.com

http:members.aol.com/PPSMan/PPSManager.htm

Post Polio Syndrome – Fourth Year Lessons

By Gladys Swensrud – February 2004 to February 2005 Excerpted paragraphs with permission.

I made a visit to my Pulmonary Care doctor, Dr. Murray We discussed the importance of correctly assessing and maintaining my neuromuscular breathing difficulties. We reviewed how I was first assessed by an overnight-at home, night oximetry, sleep study in November of 2001, and for 2 ½ years I used a Continuous Positive Air Pressure (CPAP) machine, to attempt to meet my breathing needs, for what was thought to be very mild, Obstructive Sleep Apnea (OSA). In spite of using a CPAP faithfully during that time, I was still experiencing many daytime problems, which could be night breathing related. After extensive reading and research on pulmonary issues specifically related to Post Polio, I requested further testing to be sure that Continuous Positive Air Pressure was in my best interest with my muscle challenged situation.

Dr. Murray was extremely helpful in doing every test possible within my HMO’s ability to get to the core of my problem. All the tests he ran came back nearly “within the normal range” (one of my HMO’s favorite statements!). Although he had done what he could, current medical understanding of what I was experiencing is puzzling to most health professionals. Throughout the weeks in which this was unfolding…I remained tenacious! Even if my HMO’s testing process did not indicate a change in the present therapy, I knew something was definitely still wrong, and at any cost, I needed to find out how to fix it. It was the intervention of Progressive Medical, coupled with Dr. Murray’s assistance, which finally set me on the right course.

Because of my concerns that I shouldn’t leave any stone unturned where my breathing problems were related, I next went outside of my HMO to Progressive Medical for a breathing evaluation. They determined with a simple pre-test that I had a breathing deficit, which would require a change from my CPAP to a bi-level machine. And they felt I should be further studied; their in-home test would be advisable. Based on the Progressive pre-test information, and trusting my judgment that Progressive Medical might have a solution to my predicament, Dr. Murray, doing everything he could to help me, approved the trial of a bi-level machine to be paid for by my insurer to replace my CPAP. And he ordered an overnight, hospital sleep study within my HMO to determine the values at which my bilevel would be set. To complete my investigative cycle, I, at basically the same time that my HMO hospital sleep study would be done, agreed to the Progressive in-home extensive sleep test. This would complete my groundwork and give me input from two directions that could be essential in solving my breathing puzzle.

Once the HMO, overnight sleep study was performed, the personnel in charge of evaluating/ reading the computerized print out determined (in their opinion), 2 ½ years later, I now had moderate Obstructive Sleep Apnea with no signs of Central Sleep Apnea. They felt my bilevel values should be set at 16/12. That was a far cry from my HMO’s original testing value determination of a CPAP setting at 10cm of continuous pressure, which I had lived with for the last 2 ½ years. And to complicate this even more, I would have continued to live with a CPAP of 10cm for the foreseeable future because I was the one initiating this inquiry, not my HMO.

With my overnight, hospital sleep study in hand [which if I had not requested a copy, I never would have received one], and as an informed, modern patient, I went directly to the Internet to find out how to correctly read my results. There is a plethora of information available, but one site was particularly useful to me. It analyzed the results step by step and walked me through the meaning of each result. What a magnificent treasure trove of information! http://www.suite101.com/article.cfm/sleep_apnea/57133

And after absorbing the data, I was left wondering how my HMO could just assign a diagnosis to me without first explaining how they reached their conclusion? I think medical professionals no longer have the time to participate in that portion of the diagnostic process.

After examining my results, I had questions galore about my sleep study. For instance: Why did I never get to stages 3 and 4 of the five sleep cycles? Why had my oxygen level fallen to below 60% at one point and close to that at other times? Why could I not stay in the few REM cycles that I did finally reach? It was like I would go into and out of them in a flash. Why was I constantly in stages 1 and 2 of sleep, and what exactly did that mean? What did it mean that I instantly fell asleep, almost the second I laid down? Even with electrodes stuck to me, literally from head to toe, to record my every move, in a cold, foreign, hospital room with a hard bed and strange noises coming from a CPAP machine that wasn’t mine, it took me only 1½ minutes to fall asleep. Wasn’t that unusual?

The next step was to take my sleep study results to Progressive Medical to be thoroughly reviewed, at which time they sent me home for a 4-night sleep test using a ResMed VPAP III (S/T) with Res-Link machine. It used a smart card, which evaluated my breathing along with other vital statistics of my sleep habits within that period (from total hours of sleep to Minute/Median Minute/Maximum Minute Ventilation to Mask Leak timing to Tidal Volume to AHI to Time in Apnea to % of Spontaneous Breaths per night with EPAP settings of 4.0 and IPAP settings of 12.0 to Pulse Rate, to Rise Rate, etc.). The results were very specific to my particular situation, and they discovered with bi-level (S/T) values of 12/4 and a back up rate of 8 Beats Per Minute (BPM), I was having no nighttime apnea episodes. Another important component of their testing equipment was they were able to determine, within the 4-night test, I relied upon my back up rate to initiate breaths 30% to 50% of each night. This would be supportive of the fact that my breathing issues also have a Central Sleep Apnea component that was not read by the HMO testing method.

I must recognize at this point my 1½ years and growing friendship with Rick Van der Linden, the PPS Manager himself! Rick has been the sounding board for most of my zany thoughts in year four. His analytical mind keeps me on track when I waver from my Post Polio objectives. I can bounce ideas off of Rick, and, unlike my dear, overloaded husband, Keith, Rick’s eyes don’t begin to glaze over and roll around after I inundate him with a ton of data. What I see in my own situation, and in that of many other polio survivors experiencing PPS, is a desire to protect from overdosing our spouses and loved ones. We must live with Post Polio Syndrome every minute of the day, but why should they? They are the glue of our lives, and TMI (Too Much Information) causes them to hear, “Blah, blah, blah, blah, blah,” instead of what is most important for them to hear. So I have found gathering with other polio survivors in support groups and sharing friendships via snail mail and email with those also experiencing my issues is extremely helpful.

Gladys Swensrud—swensrud@pacbell.net

“To breathe or not to breathe To sleep perchance to dream To wake refreshed From this sea of troubles we devoutly wish To promote more awareness of neuro muscular issues And end the heartaches and thousand times frustration

Of non-corroboration of our reported respiratory symptoms.” With thanks and apologies to William Shakespeare.

This article has been compiled by Hilary Boone, Founder, Secretary and Newsletter Editor of the Lincolnshire Post-Polio Network, from the majority of the text and notes on the slides of the following presentation and other sources as reported. I have resequenced some of the information presented but retained the Slide Numbers for reference.

The Evaluation and Management of Respiratory Disorders Edward Anthony Oppenheimer, M.D.

Los Angeles, California

San Francisco Bay Area PPS Group / Kaiser Permanente Conference

Aging with Disability – The Late Effects of Polio

Sept. 19, 2003

During the Conference Dr. Oppenheimer gave me permission to use his presentation and handouts to promote the respiratory needs of polio survivors. It is only in the last six months, since personally experiencing the testing, and more importantly the last three weeks when my husband has gone through the same procedure, that I have come to understand the problems being experienced, the terminology of testing and machines and realised the full importance of this work. I have expanded on initials and added dictionary definitions of many of the terms used for better understanding. It is with regret that I have to report that Dr. Oppenheimer is no longer with us. His expertise in this field was invaluable to polio survivors and those with neuromuscular disorders. We must continue his work.

The knowledge and experience of physicians (even specialists in neurology or pulmonary medicine) is often limited regarding PPS (Post Polio Syndrome) and care of people with Neuromuscular diseases. Often this is linked with lack of enthusiasm, lack of encouragement. Many physicians today are so busy that they do not find time to dig deeper when an unfamiliar problem presents itself, when a polio survivor comes in for an office appointment. Ideally a physician would be delighted, and would study the issues, and consult with available colleagues who are specially experienced – and then provide good care and progress in his/her abilities as a physician. Many polio survivors have difficulty finding such a physician. Other speakers on the program at this conference discuss this and how to prepare for a visit with your physician. The more prepared a person is, with good information and discussions with other polio survivors, the better.

[Note from last slide]

[Slide 2] The very slow progression of motor neuron impairment in PPS may result in early symptoms being over-looked both by the individual and the physician.

“Respiratory muscle weakness frequently goes undetected in patients with neuromuscular disease until ventilatory failure is precipitated by aspiration pneumonia or cor pulmonale (Heart disease that results from abnormally high resistance to the passage of blood through the lungs; it often leads to right heart failure). Diagnosis is delayed because limb muscle weakness prevents patients from exceeding their limited ventilatory capacity. A few patients develop severe respiratory muscle weakness despite little or no peripheral muscle weakness.”

– Laghi and Tobin (2003)

[1] Breathing Problems in Polio Survivors [Slide 6]

• Respiratory muscle weakness

• Bulbar impairment [affecting nerve cells in the base of the brain, controls breathing]

• Chest wall stiff and inelastic [Try taking chest expansion measurements per breath]

• Scoliosis [When standing are you now leaning over and squashing diaphragm?]

• Sleep disordered breathing

• Other additional conditions such as COPD (Chronic Obstructive Pulmonary Disease)

• Aging

[2] Who is at high risk for respiratory problems? [Slide 7]

42% of patients with post-polio syndrome

88% of who needed ventilator during acute phase

High spinal polio resulting in upper body weakness and/or diaphragm weakness; or bulbar polio during acute phase

Scoliosis

Polio survivors who also have COPD, asthma, obesity, or cardiovascular disease

[3] Symptoms of PPS respiratory problems. [Slide 8]

• Excess fatigue, low energy, anxiety, cognitive impairment

• Poor sleep, frequent awakening, orthopnea (The inability to breathe easily unless one is

sitting up straight or standing erect.), daytime sleepiness, restless legs, morning

headache

• Shortness of breath, orthopnea, DOE [could not find explanation]

• Weak cough, difficulty clearing secretions

• Ankle swelling

• Aspiration [the sucking of food particles or fluids into the lungs]

[4] PPS Muscle weakness: Respiratory impact. [Slide 9]

• Inspiratory muscles – inflate the lung – Prescribe: assisted ventilation: NPPV

(NPVV, noninvasive positive pressure ventilation, commonly said as Nippy)

• Expiratory muscles – effective cough – Prescribe: use assisted cough methods if

PCF < 270 lpm (Peak Cough Flow, litres per minute)

• Bulbar – upper airway function – Prescribe: both of the above, plus PEG and if

severe TPPV (PEG, feeding tube insertion – TPPV, tracheotomy positive pressure

ventilation ) Continues on page 14.

How do lungs work?

Every time you breathe in (inspiration), air travels from the nose or mouth, through the voice box (larynx), and down the windpipe (trachea), which then branches into the main bronchial tubes with one going into each of the two lungs.

The bronchial tubes keep dividing, becoming narrower and narrower in the process. At the end of the smallest airways are the alveoli, tiny air sacs that look like clusters of grapes. There are 300 million alveoli in the lungs – if you laid them side by side, they would cover a tennis court.

The alveoli are the “work horses” of the lungs since it’s here that the oxygen from the air is soaked up by blood, at the same time that the blood dumps carbon dioxide, which the body cannot use, back into the alveoli. The blood then distributes the oxygen throughout the body so it can produce energy, and the carbon dioxide is breathed out (expiration).

Diagnosing respiratory muscle weakness: from www.mndcentre.org.uk

During metabolism the body consumes oxygen and produces carbon dioxide. Oxygen is supplied and carbon dioxide is removed by the lungs. This can only occur if an adequate volume of air is exchanged in the lungs and this is achieved by increasing, then decreasing, the air pressure in the lungs. The co-ordinated action of the diaphragm, accessory and abdominal muscles expand and contract the rib cage creating the differences in pressure which are responsible for the flow of air. The diagnosis and treatment of ventilatory compromise therefore requires some understanding of the action and anatomy of respiratory muscles.

To breathe in, the upper thoracic accessory muscles contract and the ribcage moves out and up and at the same time the diaphragm contracts and moves down. This expands the lungs, reducing air pressure in the lungs and so drawing air in through the airway.

Abdominal Pressure Abdominal Pressure

Normal

Respiratory

Function

Accessory muscles move the rib cage out and up

And the diaphragm contracts, pushing down abdominal contents.

Weak Respiratory

Function

Accessory muscles are unable to move the rib cage outwards and the diaphragm can be too weak to contract and push down abdominal contents.

[5] Inspiratory muscles: [Slide 12] Diaphragm * Internal Intercostals – parasternal * Scalenes * Sternocleidomastoid	Expiratory muscles:[Slide 15]Pectoralis Major (upper)Latissimus DorsiInternal Intercostals – interosseousTransverse Thoracis
Trapezius	Internal Oblique
Levator Scapulae	Rectus Abdominis
Rhomboids	Transverse Abdominis
Serratus Anterior	External Oblique
Pectoralis Major
External Intercostals

* Active during normal inspiration. Others are accessory respiratory muscles.

[Slide 13 note] Most polio survivors with respiratory muscles weakness have a weak diaphragm. They are more short of breath when lying down, and have a Vital Capacity lying down (supine) >10% lower than when sitting up. However this depends on which respiratory muscles are impaired – thus there are some polio survivors who breathe best lying down (Dr. Arnold Beiser was an example of this).

[6] Bulbar muscles: [Slide 16]

• Responsible for pharyngeal and glottic upper airway function, swallowing, speech,

cough

• Pharynx – a collapsible floppy airway stabilized by contraction of pharyngeal

muscles. Muscle weakness à unstable airway with obstructive events

• Epiglottis (The flap that covers the trachea during swallowing so that food does not enter

the lungs.) closes automatically upon swallowing – incomplete or uncoordinated

closure cough, choking, gagging, aspiration, infection…

[7] Sleep and the weak diaphragm [Slide 14]

• Mechanical aspect: Postural disadvantage occurs when lying down

• Neurological aspect: During deep sleep, particularly REM (rapid eye movement)

sleep, intercostals (Muscle tissue between two ribs. This muscle is a type called skeletal

muscle.) and accessory muscles (see later in article) become flaccid and are not

available to assist the weak diaphragm.

Dreams occur during REM sleep. We typically have 3 to 5 periods of REM sleep per night. They occur at intervals of 1-2 hours and are quite variable in length. An episode of REM sleep may last 5 minutes or over an hour. About 20% of sleep is REM sleep. If you sleep 7-8 hours a night, perhaps an hour and half of that time, 90 minutes, is REM sleep.

REM sleep is characterized by a number of other features including rapid, low-voltage brain waves detectable on the electroencephalographic (EEG) recording, irregular breathing and heart rate and involuntary muscle jerks.

By contrast, NREM (non-REM) sleep is dreamless sleep. During NREM, the brain waves on the EEG are typically slow and of high voltage, the breathing and heart rate are slow and regular, the blood pressure is low, and the sleeper is relatively still. NREM sleep is divided into 4 stages of increasing depth of sleep leading to REM sleep. About 80% of sleep is NREM sleep. If you sleep 7-8 hours a night, all but maybe an hour and a half is spent in dreamless NREM sleep.

[8] PPS Respiratory pathophysiology [Slide 17]

• Gradual loss of muscle strength:

inspiratory, expiratory ± bulbar

• Scoliosis

• Decreased chest wall compliance

• Deep stages of sleep worsen Respiratory

Failure

• Sleep disordered breathing (SDB) due to

bulbar impairment ± central CNS (Central

Nervous System) changes:

OSA (Obstructive Sleep Apnoea),

CSA (Central Sleep Apnoea), hypopneas,

[9] Sleep disorders are frequent in PPS [Sl.18]

• Hypopneas and hypoventilation

• Sleep disordered breathing without

hypoventilation

• Obstructive Sleep Apnoea

• Central Sleep Apnoea

• Mixed sleep apnea

[10] Sleep always worsens respiratory

failure [Slide 19]

This slide’s title is quoted from Dr. Colin Sullivan, Sydney, Australia (Margaret Pfrommer honor lecture at ACCP’s CHEST 2000 – a version of this presentation is included on ResMed’s CD ROM – order #10712)

• Intercostal and accessory muscles are

flaccid during REM sleep + weak

diaphragm with postural disadvantage

• Hypoventilation:

O2 CO2

• Initially arousals which sleep

fragmentation

• Cascade of events follow, including:

• Blunted arousal response, reduced

REM (Rapid eye movement) sleep

• Depressed chemoreceptors

progression of Respiratory Failure

• Cardiovascular and neurohormonal

changes

• Cognitive impairment

Continued on page 16

The central nervous system is that part of the nervous system that consists of the brain and spinal cord. The central nervous system (CNS) is one of the two major divisions of the nervous system. The other is the peripheral nervous system (PNS) which is outside the brain and spinal cord.

The peripheral nervous system (PNS) connects the central nervous system (CNS) to sensory organs (such as the eye and ear), other organs of the body, muscles, blood vessels and glands. The peripheral nerves include the 12 cranial nerves, the spinal nerves and roots, and what are called the autonomic nerves that are concerned specifically with the regulation of the heart muscle, the muscles in blood vessel walls, and glands.

(Hypopnea: Literally, under breathing. Breathing that is shallower or slower than normal. Hypopnea is distinct from Apnea in which there is no breathing.) (Hypoventilation: The state in which a reduced amount of air enters the alveoli in the lungs, resulting in decreased levels of oxygen and increased levels of carbon dioxide in the blood. Hypoventilation can be due to breathing that is too shallow (hypopnea) ) or too slow (bradypnea) or to diminished lung function.) Cardiovascular: The circulatory system

comprising the heart and blood vessels which carries nutrients and oxygen to the tissues of the body and removes carbon dioxide and other wastes from them.

Pulmonary hypertension: High blood pressure in the pulmonary artery that conveys blood from the right ventricle (chamber of heart) to the lungs. The pressure in the pulmonary artery is normally low compared to that in the aorta (artery that leaves the heart) Pulmonary hypertension can irrevocably damage the lungs and cause failure of the right ventricle.

Cerebrovascular: Pertaining to the blood vessels and, especially, the arteries that supply the brain.

Dr. Colin Sullivan – Oct. 2000 – Pfrommer lecture – ACCP

[Slide 19 note] At onset of sleep ventilation falls lowest in REM sleep. Arousal is the 1st and most important mechanism to protect you but it causes sleep fragmentation. Cardiovascular changes: Pulmonary hypertension, cor pulmonale (with ankle edema—swelling), Arterial hypertension, other cardiovascular complications (coronary vascular and cerebrovascular events). Increased sympathetic output, Hyperexcitable state. When bulbar muscles are significantly impaired upper airway obstructive events can occur during sleep. This may also explain the tendency for deaths to occur at night.

— References:

Sullivan, C. E., F. G. Issa, et al. (1981). “Reversal of obstructive sleep apnoea by continuous positive airway pressure applied through the nares.” Lancet 1(8225): 862-5.

Sullivan, C. E. and E. R. Ellis (1987). “Nocturnal positive pressure ventilation via a nasal mask.” Am Rev Respir Dis 136(3): 791-2.

Ellis, E. R., P. T. Bye, et al. (1987). “Treatment of respiratory failure during sleep in patients with

neuromuscular disease. Positive-pressure ventilation through a nose mask.” Am Rev Respir Dis 135

(1): 148-52. Continued on page 18

Respiratory Muscle Testing. The respiratory muscles elevate and lower the ribs, in a cyclic manner, resulting in inspiration and expiration to maintain arterial blood gases within a normal physiologic range under varying conditions from rest to extreme exertion. Due to a large cardiopulmonary reserve, homeostasis is usually maintained in spite of severe lung disease or respiratory muscle weakness. Respiratory insufficiency or failure, which results in abnormal blood gas tensions, occurs after the work of breathing exceeds this reserve.

Without careful assessment of respiratory muscle function, significant weakness may go undetected.

In restrictive pattern disorders there is a mechanical or bellows dysfunction resulting in impaired ventilation. Examples include post poliomyelitis syndrome.

The diaphragm is the primary muscles of inspiration. Vital capacity (FVC) and maximal inspiratory pressure (PiMax/MIP/NIP) are good indicators of inspiratory muscle strength. Vital capacity is measured with a spirometer. The patient is instructed to inspire maximally then exhale as much air as possible; slow maximal exhale measures VC, and rapid maximal exhale measure forced vital capacity (FVC). PiMax also known as negative inspiratory pressure (NIP), is measured after maximal expiration at residual volume.

Pitfalls.

1. Failure to measure lung volumes in both supine and seated positions in persons with

neuromuscular disorders or spinal cord injury.

2. Poor effort due to cognitive status, pain, or anxiety during pulmonary function

testing. CLINICAL PEARLS.

1. The most sensitive indicator of respiratory muscles weakness is reduction in maximal

static inspiratory pressures. (PiMax or MIP)

2. In persons with neuromuscular disorders or spinal cord injury, spirometry should be

performed in both supine and seated positions. In persons with neuromuscular

disorder who have diaphragmatic weakness, lung volumes are lower in the supine

position due to increased work of breathing required to move the diaphragm against the

abdominal contents and overcome gravity.

©Handbook of Manual Muscle Testing by Nancy C Cutter and C. George Kevorkian McGraw-Hill, Health Professions Division. ISBN 0-07-033150-2

Excerpted from chapter by Sally Ann Holmes, MD,

Assistant Professor, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine.

Pulmonary Function Studies.

FVC – Forced Vital Capacity.	The amount of air moved when lungs are forcefully expanded after maximal expiration.The amount of air moved in normal inspiratory effort.The amount of air contained within the lungs at the end of maximal inspiration.The amount of air in the lungs at the end of normal expiration.The amount of air in the lungs at the end of maximal expiration.Forced expiratory volume in one second.Tidal volume times rate of breathing per minute
TV – Tidal Volume. TLC – Tidal Lung Capacity
FRC – Forced Residual Capacity.
RV – Residual Volume
FEV1 – Forced Expiratory Volume Minute Volume
PiMAX or MIP – Maximal Static Inspiratory PressurePeMAX or MEP – Maximal Static Expiratory Pressure	Static pressure measured near RC after maximal expiration
Static pressure measured near TLC after maximalinspiration.
MVV – Maximal Voluntary Ventilation Total volume of air expired during 12 second period of
patient breathing as fast and as hard as possible: expressed in L/minThe amount of air flow during maximal cough expressed in L/second.	PCF – Peak Cough Flow

©From Handbook of Manual Muscle Testing by Cutter and Kevorkian—ISBN 0-07-033150-2

TESTING PATIENTS WITH NEUROMUSCULAR CONDITIONS.

Testing Polio Survivors. Not an easy task. No two the same, no set pattern. If we have arrived in your office/hospital for an appointment then it is because we have had symptoms for some time. Where we are now is the last place we want to be. Ask us when we notice these symptoms; what actions are we doing, have done earlier in the day, the day before. Ask us how we do the actions and if possible observe them. Repeat test three times to same level if possible. If you are asking patients with neuro muscular weakness to do this and are telling them to rest as long as they need between tests because of their fatigue then PLEASE record their resting times. You have allowed their weakened muscles to recover between each test – the figure recorded only relates to how they achieved this test. It may not relate to their ability in real life. What result would you get if you asked them to repeat to standard resting time? Using other muscles to achieve breathing tests. Polio Survivors are canny folks and for all their lives have used trick movements, asked other muscles to take over tasks and/or assist in actions. To hold their breath for ten seconds might require additional muscle use. For instance, are they tightening leg muscles and pushing both feet hard against the floor to hold their breath for ten seconds; are they raising their head to bring in more muscles to assist in the supine test? Has this skewed the figure recorded?

Observing us doing some of the actions might show that:-

• we stop breathing to concentrate on achieving an action;

• that we could be using our accessory breathing muscles to help us achieve another task taking away

their ability to assist in breathing

• that we lean further over as we walk/walk and carry reducing the ability of our diaphragm;

• we are upper chest breathing for long periods, etc.

If you are testing in a hospital environment where the patient is not doing their normal daily tasks – using up their normal energy tokens – have they got more energy available to achieve what you are asking? If your sleep testing is done in a multi bed ward, is your patient sleeping as deeply as they do at home? Are the tests you do and they way you record the results giving you an accurate picture of how neuromuscular patients breathe as they go about their daily lives?

Always start with NPPV unless this is not tolerated.

[11] Clinical evaluation [Slide 22]

• Listen to the person’s story, goals and preferences

• Physical examination

• Tests that may be helpful:

Spirometry; supine VC, MVV Peak cough flow (PCF) Echocardiogram

MIF and MEFPulse oximetry, ABGOvernight home oximetry

Sleep study if no hypoventilation is present

Follow-up monitoring

• Physical examination: check speech and voice volume, cough, scoliosis,

ability to breathe lying down, abdominal movement during inspiration, etc .night home oximetry only if other tests listed above it are relatively normal and there is a reasonable question regarding respiratory/bulbar muscle weakness.

• Sleep study (polysomnography) is advised for selected polio survivors who

have sleep related symptoms, when there is a question of Sleep Disordered

Breathing, and the other tests find no evidence of significant respiratory

muscle weakness with hypoventilation.

[12] Monitor respiratory status [Slide 23]

• Clinical physiological monitoring allows patient to choose MV (mechanical

ventilation) or palliative care, before acute respiratory failure occurs

• Vital Capacity sitting and supine

• MIP and MEP (Maximum Inspiratory and Expiratory Pressure)

• Peak cough flow rate (PCF)

• Spot oximetry, and nocturnal oximetry

[13] Home respiratory monitoring by patient [Slide 24]

• Peak cough flow (PCF) Unassisted and assisted PCF

• Peak flow rate

• Incentive spirometer (e.g.: Tri-flow type)

• Oximetry spot tests (e.g.: Nonin Onyx 9500)

by RT, (Resp Therapist) PHN (Pulmonary Health Nurse) or by patient

Deciding to use assisted ventilation requires careful consideration to achieve optimal decision-making. Ideally the Polio survivor and family member or friend should participate in a specially designed educational program for about two hours (with experienced staff available, Respiratory Therapist ± Respiratory Nurse ± Pulmonary MD) this can often be coordinated and presented by an experienced RT. This should include:

• Easily understood information

• Possibly a video showing the home ventilator and interface options

• Some hands-on opportunity to try different available ventilators and interfaces

• Peer networking

• A group discussion period

• An opportunity to discuss issues on individual follow-up visits

[14]Major options if Mechanical Ventilation is needed [Slide 27]

• Iron Lung, porta-lung, cuirass

• Rocking bed, pneumo-suit

• NPPV – Noninvasive positive pressure ventilation

• In-Exsufflator: CoughAssist

• Pneumobelt (IAPV)

• Tracheotomy ventilation (TPPV)

Pneumobelt is useful for daytime assistance – It is under-utilized. IAPV = intermittent abdominal pressure ventilator.

Tracheotomy is useful for selected VAIs when NPPV is no longer satisfactory.

[15] Reasons to start NPPV early [Slide 28]

• To improve: symptoms, Quality Of Life, sleep, and daytime function

• Provide the experience and skills needed in case acute respiratory infection occurs

• Hands-on NPPV experience helps with ventilator decision-making

• Equipment may improve cough

There should certainly be symptoms related to respiratory muscle weakness and some evidence on pulmonary function testing that support this conclusion. The available guidelines need to be kept in mind, however each person needs individual consideration in view of their situation with the advice of their pulmonary physician.

[16] USA Consensus Conference NPPV Guidelines Criteria to qualify for NPPV:[Sl.29]

Diagnosis of PPS with respiratory symptoms attributed to hypoventilation, and At least one physiological abnormality:

• FVC < 50%, or

• MIP < 60 cm H2O, or

• PaCO2 > 45 mm Hg, or

• Sleep oximetry SpO2 < 88% for at least five continuous minutes

CHEST (1999) 116:521-534

American College of Chest Physicians (1999): Clinical indications for noninvasive positive pressure ventilation in chronic respiratory failure due to restrictive lung disease, COPD, and nocturnal hypoventilation–a consensus conference report. Chest (1999) 166:521-534

[17] HCFA Respiratory Assist Device (RAD) Policy [Slide 30]

Requirements for a Bilevel Respiratory Aid Device (NPPV) device with or without back-up rate for Neuro Muscular diseases:

Documentation of NM disease (without significant COPD)* and…

1. PaCO2 > 45 mm Hg while awake; or

2. Sleep oximetry SpO2 < 88% for at least five continuous minutes; or

MIP < 60 cm H2O, or

FVC < 50%

* By MD with experience & training in non-invasive respiratory assistance -Oct 1999 Medicare Guidelines are similar to those recommended by the Consensus Conference (Chest 1999) – previous slide.

HCFA is now CMS (Centers for Medicare and Medicaid Services).

FDA has regulatory authority to approve a product as a ventilator (not CMS). The FDA approved bilevel equipment with back-up rate capability as ventilators. A ventilators, by law, require on-going Medicare reimbursement as long as the beneficiary uses it. The level of reimbursement is higher because a “ventilator” requires “frequent and substantial servicing” by the home medical equipment company. CMS proposes to change reimbursement for these bilevel ventilators (K0533) to ‘capped’ reimbursement which is a lower monthly payment for only 13- 15 months…

[18] Most Post-Polio VAIs use night-time Mechanical Ventilation [Slide 31]

• This improves: Survival, Quality Of Life, and daytime function,

Abnormal Blood Gases and sleep quality

• Daytime function improvement is due to:

• Resting muscles for 6-10 hours at night

• Ventilatory support at night prevents sleep related progression of respiratory

failure

The two explanations for the benefit from nighttime Mechanical Ventilation are:

1. Resting muscles for 6-10 hours at night

2. Ventilatory support at night prevents sleep related progression of respiratory failure

Both statements are probably true. Traditionally it was felt that muscle rest was the reason. Today it seems clear that treating the sleep related problems, that result in progression of Respiratory Failure, is very important.

[19] Interfaces [Slide 32 and notes]

Nasal mask or pillow- Mouthpiece – Full face mask – Custom made interfaces

I usually advise my patients to have three comfortable interfaces: a nasal mask and a nasal pillows; and a mouthpiece. Most people need to work with an experienced Respiratory Therapist and try at least 6 – 7 different nasal masks and pillows to find two that fit correctly and are comfortable. If a mouthpiece is used with a bilevel S/T ventilator, a small hole needs to be drilled into it or it needs to be attached to a whisper valve to work properly with bilevel’s EPAP.

Ideally a person come to an experienced medical center for day visits, or stays overnight, to be properly started on NPPV. This requires time for the staff to work with the patient, provide a “no rush” situation to try different equipment and interfaces and time to get used to the experience. Louie Boitano, MS, RR (Northwest Assistive Breathing Center, Pulmonary Clinic, University of Washington, Seattle) describes his approach in an article in Ventilator-Assisted Living: “Getting Used to Noninvasive Bilevel Pressure Ventilation” – Ventilator-Assisted Living (Summer 2003) Vol. 17, No. 2

Post Polio Health International Ventilator Users Network [IVUN] www.postpolio.org/ivun/index.html

Home Ventilator Guide is IVUN’s latest resource compiled by Judith R. Fischer. The comprehensive resource displays technical information about the world’s home ventilators in charts that are easy to read and makes comparing home ventilators more convenient. It features bilevel positive airway pressure ventilators, volume-cycled ventilators, pressure support ventilators, and combination or multi-mode ventilators.

http://www.post-polio.org/ivun/HomeVentGuide05S.pdf

Bilevel Positive Airway Pressure Ventilator. – Bilevel ventilators developed by modifying CPAP to also produce inspiratory positive airway pressure [IPAP] to assist inspiration (breathing in). IPAP and expiratory positive airway pressure [EPAP] setting are adjusted separately. People with neuromuscular disease and weak diaphragmatic muscles often may have difficulty breathing in and need IPAP set higher than EPAP, e.g. an IPAP of 14 and an EPAP of 3. The difference between IPAP and EPAP is called the span, and in these cases should be at least 10. [From Home Ventilator Guide page 3]

[20] Bi-level Spontaneous “S” Mode – (set to switch between prescribed pressures.) [Sl.39]

• Delivers an expiratory pressure (EPAP) and a higher inspiratory pressure (IPAP)

• Goal to normalize ventilation (blood CO2 level) OR relieve airway obstruction

• Responds to spontaneous effort only

• Useful for selected COPD and Sleep Disordered Breathing

[21] Bi-level Spontaneous / Timed “S/T” Mode – (set to spontaneous mode but switches to a timed mode [referred to as the back up rate] when breaths are not initiated by the individual.) [40]

• Same as “S” mode with the addition of:

• Back-up rate setting for periods of

apnea,

hypoventilation,

or to decrease work of breathing • Most appropriate patient types:

• Neuromuscular disease Post Polio Syndrome

• Central apnea

• Nocturnal Hypoventilation

[22] IPAP – inspiratory positive airway pressure [Slide 41]

• Pressure support delivered to the patient when the machine is triggered into the

inspiratory phase

• Increasing IPAP and IPAP-EPAP difference will increase tidal volume

• Improves alveolar ventilation – Rx for hypoventilation

• Decreases CO2 levels and/or increases O2 levels

• Reduces accessory muscle use

[23] EPAP – expiratory positive airway pressure [Slide 42]

• Amount of pressure remaining in the circuit during the patient’s expiratory phase

• Increasing EPAP will:

• Eliminate obstructive apneas and hypopneas

• Increase Forced Residual Capacity

[24] Factors Affecting the Level of Ventilatory Support [Slide 43]

• Difference between the IPAP and EPAP levels set: DP should be > 10 cm H2O

• Inspiratory time

• Impedance of the patient’s chest wall / lungs

[25] Bilevel S/T (Spontaneous/Timed) ventilator usual initial set-up: [Slide 38] EPAP: 3 – 4 cm H2O

IPAP: 8 – 10 cm H2O

IPAP is gradually increased, as needed, to 14 to 20 cm H2O

P (IPAP – EPAP) should be than 10

High-span bilevel ventilation is advised. The P (IPAP – EPAP) should be greater than 10 cm H2O to achieve satisfactory alveolar ventilation.

[26] Back-up rate in S/T mode [Slide 44]

In the Spontaneous / Timed mode, the rate is set as a “back-up”

• To decrease work of breathing (WOB)

• If patient has exhibited central apnea

• In case of abnormal slowing in the patient’s spontaneous respiratory rate Suggested initial settings:

• Daytime: 4-6 bpm below the patient’s resting respiratory rate (RR)

• Nighttime: set at patient’s resting rate

OXYGEN SHOULD NOT be used to treat hypoventilation [Slide 43]

Indications for oxygen for a polio survivor • COPD, cor pulmonale,

other lung disease causing a low PaO2 –	without hypoventilationPalliative care
• Pneumonia	Air travel

The suggested initial back-up rate settings reflect my usual approach. This needs to be adjusted to the needs of each individual ventilator assisted person (there is no one approach that is correct for everyone). My goal is to provide as much muscle rest at night as possible, and thus to eliminate the need to use respiratory muscle effort to trigger breaths while sleeping at night by adjusting the back-up rate to the person’s resting rate while sleeping. It requires an experienced RT to adjust the NPPV ventilator to achieve the best synchrony between the patient and the bilevel ventilator [this is discussed by Dr. Colin Sullivan in his talk “Sleep – It’s Role in NPPV given at Chest 2000 – the Margaret Pfrommer honor lecture)

[27] Setting-up NPPV requires [Slide 49]

• Experience: MD, RT, RN + Patient – and team work

• Equipment and interface options [look at a variety of masks and try more than one]

• Time to work with patient

[28] Initial goals of NPPV [Slide 46]

• Relieve symptoms

• Normalize sleep

• Provide experience with NPPV, as the number of hours needed daily gradually

increases

• Prepare patient’s ability to survive an acute respiratory infection

• Maintain oxygen saturation at 95% – use NPPV without added oxygen

[29] Follow-up of NPPV [Slide 47]

• Regular visits to check patient and adjust equipment

• Initial IPAP: usually is 8 to 10, then increase gradually to 14-20 cm water

• Initial EPAP: 3 to 4 cm – usually not changed

• Patient comfort and skin care

• Several interfaces – include a mouthpiece

• Safety issues

[30] Effective cough is critical [Slide 56]

• Practice repeated huff cough

• Breath stacking techniques – increases MIC

• Check peak cough flow rate

• Manual cough assist methods – increases PCF

• Train to use a device to improve cough and clearance of secretions; e.g. –

CoughAssist

• NPPV often fails if secretions cannot be cleared

[31] Nutrition and Respiratory muscle strength [Slide 51]

• Malnurished people become weaker, immune function becomes impaired

• Respiratory muscle strength is further impaired if person is malnourished

[CPAP – CONTINUOUS POSITIVE AIRWAY PRESSURE [Slide 49] CPAP should NOT be used for a polio survivor with respiratory muscle weakness and hypoventilation.

CPAP is useful for polio survivors without hypoventilation (with good respiratory muscle strength) – who have sleep apnea.

[32] Respiratory muscle performance Well nourished. Poorly nourished* [52]

MIP {-cm H2O} 95 35

MEP {cm H2O} 151 59

VC {% predicted} 101 63

MVV {% predicted} 80 41

*71% of ideal body weight.

Arora & Rochester (1982) Amer Rev Resp Dis 126:5-8

[33] Safety drills are very important [Slide 50]

• Make a list of all possible problems & emergencies …with action needed

• Ventilator Assisted Individuals and caregivers should be trained; and practice at least

once a month the actions needed for each possible problem

• Basic emergency equipment should be available, including an Ambu bag

[34] Respiratory tips to staying healthy – Basics [Slide 20]

• no smoking;

• avoid second-hand smoke and environmental hazards;

• get both pneumovax and influenza immunizations;

• avoid people with viral respiratory infection;

• good posture; treatment of scoliosis if needed;

• good nutrition, avoid obesity.

[35] Respiratory tips to staying healthy – Additional Steps if needed:- [Slide 21]

These are additional steps to consider particularly if there appears to be evidence of some slowly progressing respiratory or bulbar muscle weakness.

• Consider home monitoring using simple equipment: Peak Flow meter, and an

incentive spirometer (used at hospitals for post-op care) – using these once

every week or month allows you to be sure you are staying the same or

detect a pattern of worsening and keep a written log

• Glossopharyngeal breathing; learn and practice it daily. [GPB or Frog breathing

uses the muscles of the tongue (the glossa) and the throat (pharyngeal muscles) to

force air into the trachea and lungs through a repetitious process. This process

involves using the tongue and throat muscles as a pumping mechanism to force air

into the lungs]

• Chest expansion exercises – Use GPB, Ambu resuscitator bag, or volume

ventilator to maintain lung and chest wall compliance:

• Learn assisted cough techniques when peak cough flow (PCF) becomes

abnormal < 270 lpm

[UK information. See next page, paragraphs relating to this subject taken from UK article by Dr. Robin Howard and Dr. Craig Davidson from the Lane Fox Respiratory Unit.

Long Term Ventilation in neurogenic respiratory failure]

Long Term Ventilation in neurogenic respiratory failure.

Robin S Howard and Craig Davidson. J. Neurol. Neurosurg. Psychiatry 2003;74,24-30. The Lane-Fox Respiratory Unit and Department of Neurology, Guy’s & St. Thomas’ Hospital, London,

Excerpted paragraphs from UK perspective.

1. Respiratory failure often develops insidiously and symptoms may not be pronounced of

complained about. Breathlessness is particularly unreliable in the context of a patient with limited

mobility. Nocturnal hypoventilation and/or recurrent upper airway obstruction with sleep disruption

may initially cause no symptoms. Eventually patient of carers notice insomnia, daytime

hypersomnolence and lethargy, morning headaches, reduced mental concentration, and depression,

anxiety or irritability. In addition there may be a complaint of abnormal sleep movements, nocturnal

confusion, or vivid or distressing dreams.

2. When upright, active abdominal muscle contraction during expiration may mistakenly suggest

preserved diaphragmatic function as the diaphragm passively descends at the beginning of

inspiration. It is an important, and often missed, sign of profound respiratory muscle weakness.

3. Adequate ventilation is dependent on respiratory muscle pump, the ventilatory load placed upon

it, and the central drive. In patients with neuromuscular disease, more than one factor is often

present. A reduction in central drive occurs in sleep, even in health, when respiration is dependent on

diaphragm function, especially during REM sleep when the accessory muscles become inactive. At

this time, airway resistance also increases, particularly of the upper airways. These factors may thus

combine to cause hypoventilation. Sleep is a critical period for respiratory compromise.

4. During acute poliomyelitis respiratory insufficiency occurs as a result of respiratory muscle

weakness or involvement of the central respiratory control mechanisms. Respiratory insufficiency

may develop many years after poliomyelitis, even in the absence of any obvious respiratory

involvement during the acute illness of convalescent phase. [19]

[19 – Howard RS, Wiles CM, Spencer GT. The late sequelae of poliomyelitis. QJM 1988:251:219-

232 Forced vital capacities of the 40 patients who did not receive respiratory support during their

acute illness but came to needed after a mean latent period of 33.7 years ranged from 0.8 to 1.81

whilst FVC of the 48 patients who received support during the acute illness, but have not required it

subsequently, ranged from 1.3 to 2.31. Additional note. Most of the people in the study were

severely affected originally, 58.2% needed respiratory support during the acute illness.]

5. Symptom scores, such as the Epworth sleepiness score, are of less use in neuromuscular disease

than in conventional non-neurological OSA [Obstructive Sleep Apnoea]. This is partly because of

acclimatisation to symptoms, partly the expectation of deterioration in the more progressive disease,

and also because OSA is associated with more sleep arousals leading to sleep deprivation. OSA

occurs more frequently in neuromuscular disease than in the normal population. For instance, we

found that >40% of polio survivors referred with fatigue and other symptoms of the post-polio

syndrome have OSA caused by occult or mild bulbar weakness. OSA is also more common in other

neurological diseases, especially with bulbar involvement.

6. Continuous positive airway pressure (CPAP) is effective in treating OSA. It stents open the upper

airway and, by reducing arousals, provides relief of daytime fatigue. CPAP therapy does not correct

alveolar hypoventilation and in progressive neuromuscular disease we would initiate NIV [non

invasive ventilation, same as NPPV] in the absence of symptoms if significant nocturnal

hypoventilation is revealed by oximetry or the daytime Pco2 is >7.5kPa. Risk factors for respiratory

failure include clinical evidence of diaphragmatic weakness, such as paradox or orthopnea, a vital

capacity >50% predicted, or SNIP < 30cm H2O. As the vital capacity falls progressively, in many

conditions, serial measurements can guide both discussion of NIV and its initiation.

N.B. We recommend reading the full articles to ensure full understanding of the excerpted items

Pulmonary dysfunction and its management in post-polio patients. John R Bach, Margaret Tilton—NeuroRehabilition 8 (1997) 139 – 153 Excerpted items – Lincolnshire Post Polio Library article.

1. Abstract

Respiratory dysfunction is extremely common and entails considerable risk of morbidity and mortality for individuals with past poliomyelitis. Although it is usually primarily due to respiratory muscle weakness, post-poliomyelitis individuals also have a high incidence of scoliosis, obesity, sleep disordered breathing, and bulbar muscle dysfunction. Although these factors can result in chronic alveolar hypoventilation (CAH) and frequent pulmonary complications and hospitalizations, CAH is usually not recognized until acute respiratory failure complicates an otherwise benign upper respiratory tract infection. The use of non-invasive inspiratory and expiratory muscle aids, however, can decrease the risk of acute respiratory failure, hospitalizations for respiratory complications, and need to resort to tracheal intubation. Timely introduction of non-invasive intermittent positive pressure ventilation (IPPV), manually assisted coughing, and mechanical insufflation-exsufflation (MI-E) and non-invasive blood gas monitoring which can most often be performed in the home setting, are the principle interventions for avoiding complications and maintaining optimal quality of life. © 1997 Elsevier Science Ireland Ltd.

2. Respiratory muscles weaken with age, fatigue, and ultimately with the death or dysfunction of over-worked anterior horn cells which had survived the acute poliomyelitis. This is manifested by a decrease in pulmonary volumes, maximum inspiratory and expiratory pressures, and peak airflows. 3. Patient evaluation – [a] Full batteries of pulmonary function studies and arterial blood gas sampling are rarely useful for outpatients with any primarily restrictive pulmonary conditions unless concomitant intrinsic lung disease is suspected. A careful history, simple spirometer, and a peak flow meter are most useful for routine patient evaluation and an oximeter and capnograph are useful for more affected patients.

[b] The VC should be measured with the patient sitting, supine, side lying, and when wearing thoracolumbar orthoses when applicable. A properly fitting orthosis can increase VC whereas a poorly fitting one that restricts chest movement will decrease it. The VC is often most reduced when the post-poliomyelitis individual is supine because of inordinant diaphragm weakness. The presence of CAH may not be suspected unless the VC is obtained in this position. Evaluation of FEV1 should be done whenever COPD is suspected.

[c] Although patients with CAH can have many transient and often severe oxyhemoglobin desaturations, a ‘sawtooth’ pattern with more than 10 transient 4% or greater desaturations per hour in a symptomatic patient with normal supine VC and mean SaO2 may signal uncomplicated sleep disordered breathing. For symptomatic patients oximetry studies alone are highly sensitive in screening for this condition. Outpatient polysomnography can assist in the evaluation of patients who are symptomatic despite having inconclusive nocturnal oximetry and carbon dioxide studies and relatively normal VCs . Some patients’ symptoms are the result of a combination of inspiratory muscle weakness and sleep disordered breathing. Patients should be re-evaluated yearly or whenever there is a change in symptoms. should be done whenever COPD is suspected.

4. The management of post-poliomyelitis respiratory sequelae – Patient counselling includes cautioning to avoid dehydration, heavy meals, extremes of temperature, humidity, excessive fatigue, exposure to respiratory tract pathogens, obesity, sedatives, and narcotic use. The need for appropriate flu and bacterial vaccinations and early attention to maintaining alveolar ventilation and eliminating airway secretions during respiratory tract infections are important to decrease the risk of pneumonia. Therapeutic exercise programs, extremity bracing, energy conservation, assistive equipment needs, and day to day functioning should also be addressed. The key therapeutic goals are to maintain normal alveolar ventilation around the clock, to provide ‘range of motion’ to the lungs and chest wall, and to provide sufficient PCF to effectively clear airway secretions. Therapeutic options for accomplishing these goals should be presented and the patient ultimately trained and equipped. [End items]

E-Mail Forum by Mary McCreadie.

The Forum became decidedly lively following the March issue of the British Polio Fellowship’s bi-monthly magazine, The Bulletin. “In a profile of three newly-appointed BPF Trustees,. One stated that ‘She became frustrated with the direction of the Fellowship and decided to become a Trustee. She felt it was going more towards supporting people with post polio syndrome rather than all the members. “Not everyone thinks there is such a thing, it could just be old age,” she says.’ Our members responded…

“I thought the BPF had come out of denial about PPS and to read that one of the Trustees puts this forward as her main reason for taking on the position has, frankly, annoyed and upset me.”

“If a Trustee of a body, representing those with this condition openly doubts the existence of the condition then what hope have any of us, whether BPF or LPPN members, have of convincing our GP’s etc that it is genuine.”

“….I expect something better from an organisation which supposedly exists to represent and support people like me. If this lady thinks PPS is ‘just old age’ can she explain why my symptoms first appeared in my mid-forties?”

The latest issue of The Bulletin contained a well-written letter from one of our members Diana Foweraker, which voiced the feelings of most pps sufferers beautifully. The BPF now states that the trustee’s remarks had been ‘taken out of context’; that the profile wasn’t complete. The BPF have published a Policy Statement defining PPS in outline, and confirming their belief that it is a genuine condition. Whilst the whole affair caused a lot of upset and outrage, something good has come out of it – which proves that it is much better to speak up than suffer in silence! We must point out that they have mentioned PPS in a considerable amount of past literature.

Loos [UK light hearted term for Toilet] featured once again – this time we discussed access to disabled loos, and some good advice was given:

“As far as pubs are concerned, if visiting a new one, it is worth ringing up beforehand to find out if they have an accessible loo.”

“Ring your local authority, tell them you are disabled and would like a ‘Radar’ key, [Radar keys open all toilets with Radar locks, and we have found Radar padlocks on gates in nature preserve as public access is a ‘kissing gate’] and they should then tell you that you can have one by calling at the office and producing £6.”

“Alternatively, go to: http://www.radar.org.uk/radarwebsite/ Select “National Key Scheme” from the left hand navigation column and that will provide background information. Note that as previously covered on this list, you should be able obtain the key ‘VAT free’.”

There were also tributes to the longest iron-lung survivor, John Prestwich. “Sadly, John who had been in hospital since January 12th passed away on February 27th. http://www.action.org.uk/news_media/john_prestwich.php

We’ve discussed itching, thin and cracked skin – which has produced some useful advice: “I have found taking Vitamin C and zinc very good. I take 1000mg of low-acid Vitamin C every day. This advice came from one of our Australian sources – Tessa Jupp, who is a nurse and nutritionist. When things get out of hand with a skin infection, it’s homeopathic remedies every time and they work for me like antibiotics never have.”

“I use a product with Urea in it for my feet called CCS Skin Care Foot Care Cream. It helps with cracked heels, and it has had an interesting unexpected effect: for years I suffered with verrucas on my feet, and found them impossible to eradicate – if I got rid of one, another would appear. After using this product for a few weeks, all the verrucas disappeared, and have not returned! It’s available in branches of Boots and Lloyds chemists. ”

A discussion about the best kind of wheelchair cushions taught me a lot! The advice given enabled me to tell Wheelchair Services what I needed. In a very short time I was provided (free) with a superb gel-cushion which has done a lot to alleviate the soreness which comes from sitting in one position for any length of time.

As we’re short of space this issue, I shall just mention a few more of the other topics, in the hope that they will inspire more of you to come and join in! The more voices we have on our list, the more information can be passed on. As you can see, we talk about anything and everything that affects our lives as polio survivors.

Other subjects ranged from helping-hand dogs, experiences with neurologists, attitudes of medical professionals, and the television film on Sister Kenny.

If you would like to join the list and are a paid-up member of the LincsPPN, send an e-mail to join-pnl@lincolnshirepostpolio.org.uk including your full name.

Email request – Dear Lincolnshire Post Polio Network Members,

I am a novelist working on a book that revolves around London during WWII. One of my characters, a woman, contracts polio in late 1942, perhaps early 1943. She would be around 23, living in Middlesex and working for the Women’s Auxiliary Air Force. She’s born in Dagenham, where her parents and younger siblings still reside during the course of the story. I’m having the dardenest time finding any information on treatment of polio during this time. I am aware there was the Iron Lung, but was this the only course? If anyone has any memories of this time and would feel comfortable sharing them, please feel free to contact me either by email or letter. Being as specific as possible about your personal experiences or memories of others’ experiences would be incredibly helpful. What might seem like a boring detail to you, could be a gold mine to me!! Thank you deeply in advance. Best Wishes.

Jane Ratcliffe, 2588 Marcy Court, Bloomfield Hills MI 48302 USA janeratcliffe@mac.com

Email about Shiny Braces – Barbara Snow from the San Andreas PPS Group in California posted the following on a Post Polio List about her braces.. She was more than happy to share this when I asked if I could publish and said she would love to hear from some more UK PPS folks.

In high school I wore two long leg braces. I remember getting a new pair and they were all shiny, stuck out like a sore thumb I thought. I got a metal file and sat there for hours in my room trying to make them dull. Of course if they weren’t shiny no one would see them! On a visit to my Orthotist he questioned me about how this happened, I told him the whole story. He was furious as he said he worked hard making those braces look nice. I got my last

brace from him 11 yrs ago and he still remembered…….. P.S. I never could walk and hold

hands or an umbrella because I used crutches. Now that I am in a power chair I can do both.

Barbara Snow <basilbabs@GOLDRUSH.COM>

Annual General Meeting

Saturday 9th September 2006

Memorial Hall, North Hykeham, Lincoln, Lincolnshire

Doors open 10.00 a.m. AGM starts at 10.30 a.m. Buffet Lunch at 12.00 followed by

MAIN SPEAKER

Helen A. Kent, BS, RRT,

Owner of Progressive Medical, Carlsbad, California, U.S.A. 92010

www.progressivemed.org

Helen will be speaking about the problems experienced by people who have neuromuscular conditions:-

1. What tests should be done and the information they provide

2. Mechanical ventilation equipment being used today

3. Support that patients should expect.

Helen is very passionate about her work, helping neuromuscular support groups in California and patients with various types of neuromuscular problems all over the world.

Her holiday plans bring her to the UK in September and she offered to fly in a few days earlier to speak to our members. She is offering all attendees some tests which will show if they need/ do not need to see a Respiratory/Sleep Consultant.

Tea, Raffle and Questions & Answers. Please submit questions, even if you cannot attend.

Doors close at 5.00 p.m.

N.B. There will be Friday and Saturday Evening Get-togethers.

All members attending who would like to be tested please

return the enclosed slip as soon as possible so that we can assist Helen in planning her day.

Linc Pin Volume 5 Issue 9 Read More »

Linc Pin Volume 5 Issue 8

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 8 — March 2006

WebSite – http://www.lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

21st January 2006 Mary and Denise

Celebrate their Civil Partnership Ceremony

25th December 2005

Luke and Grandma Ellen Riddle

29th December 2005

Fiona and Grandma Marcia Falconer

February 14th 2006

Tony & Diane Meladio’s Wedding Day

at Montego Bay, Jamaica.

CONTENTS. Page 3 – Message from the Chair Page 4 – Response to article on pensions by Margaret Edmonds, Page 6—Cherish Your Arms by Anne Wood Page 10 – Comfort Hints from Viola Pahl, Air Cushion and Apron. Page 10 – Dear Post-polio’s, anyone know my Dad? Page 12 – Hypoventilation? Obstructive Sleep Apnea? Different Tests, Different Treatment. By Judith R Fisher, MSLS, Editor, Ventilator-Assisted Living Page 15 – Information on Sure Foot Cane and Crutches. Page 16 – Hydrotherapy by Mary McCreadie Page 18 – Back Page Pictures, Plus some smiles. Page 20 – Members Email Forum Page 22 – Caregivers Pages—Bill of Rights, Tips and a Message to Our Caregivers Page 24 – Photos re pages 6 and18 and Get Well Soon to John Hartman WE WOULD LIKE TO THANK THE FOLLOWING FOR DONATIONS RECEIVED TOWARDS OUR WORK.

Robert Price, Lesley Forsyth, Yvonne Grosse, Ewan Peddie, Sylvia Fortune

Jim and Jenny Rayner, Judy Barter, Barry and Olivia Branston, Di Brennand,

Pauline and Robin Butler, Denise Carlyle, Sheila Dunnett, Margaret Edmonds,

Hilary Hallam, Pat Hollingworth, Mary Kinane, Mary McCreadie, Di Newman, Chris Salter

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – June 2006

Articles for publication 4th May by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Email List Facilitator – Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Dear Readers,

Welcome to the first of our quarterly newsletters. Team members, including some new volunteers on this side of the pond, have been busy writing pieces for this edition. Mary McCreadie has been monitoring some of the issues which come up for discussion and debate on our Members E-mail Forum which is basically a discussion group on e-mail. Some of these discussion topics are printed in this edition for your interest. Thanks to Mary for helping to bring a focus to specific topics relevant to polio survivors both in the UK and beyond. Hilary has also begun a section of congratulations to members who have recently had grandchildren, married or indeed formed civil partnerships (the law changed here in the UK in December), so we hope to continue this trend of publishing members’ good news on a fairly regular basis. Thank you Hilary for finding the time and energy, and the copy, to put this newsletter together when Richard has been through so much recently. I also want to acknowledge Robin’s regular contribution and wish him well with some surgery on his feet next week—if I get this piece in on time we will have the newsletter printed on time, despite busy schedules. I would encourage members to send stories and viewpoints, to join the e-mail forum, to volunteer some time to help with our upcoming AGM (we are awaiting the Charity Commission’s go-ahead to hold the next AGM in June) or just to keep reading the newsletter and sharing the information.

With best wishes. Mary Kinane, Chair. mary.kinane@lincolnshirepostpolio.org.uk

P.S. Here is an article from my local neurological alliance, the Lancashire & South Cumbria Neurological Alliance (LASCNA), which was published in the December 2005 – Volume1, Issue 3 of Neuro News and which I thought might be of interest. What is happening in your area?

The inadequate provision of electronic wheelchairs, across Lancashire & South Cumbria, was brought to our attention by the Regional Care Advisor for the MND Association. LASCNA presented a paper, at the June meeting of the Neurosciences Commissioning Advisory Group, demanding answers as to why waiting times depended very much on postcode.

In response to this paper, PCTs have found additional resources to help resove this issue. Of the eight PCTs that commission wheelchairs, from the Disability Service Centre in Preston (part of Lancashire Teaching Hospitals Foundation Trust) four have committed additional resources, on a non-recurrent basis, to reduce the numbers on the waiting list and to especially target those that have been waiting an unacceptably long time.

The extra amounts made available are: Blackburn with Darwen £50,000, Blackpool £50,000, Wyre £36,000 and Fylde £12,000. Blackburn with Darwen have also made a further commitment to clear, entirely, their waiting list. The approximate cost of this would be about £45,000.

At least 80 extra patients would be treated with the initial £148,000 and another 23 for the second tranche of Blackburn funding.

Morecambe Bay have stated that there is no extra funding available we are still waiting to hear from Burnley, Pendle & Rossendale, and Hydeburn & Ribble Valley. Preston PCT have given a commitment to clear their relatively small backlog.

Response to article on pensions: by Margaret Edmonds. Following the article in the last LincPIN about occupational pensions, Dinah Foweraker wrote to me with some ideas. Dinah herself obtained ill-health retirement five years ago and her article about it was published in an earlier issue of LincPIN.

She suggests that it may be getting more difficult to get early release of pensions on health grounds and I think in these days of everybody being expected to work longer and longer before getting any pension at all, it’s worth being aware of this and being very clear about your own needs and rights – an occupational pension is part of what you’ve earned over the years.

Dinah makes some very valid points, including:

a) looking carefully at the rules of your own pension scheme; if you are a member of a trade union or staff organisation, get help and advice from them at an early stage. They may be able to act as a ‘friend’ at any discussions with your employer if you feel you need support.

b) Remember that Occupational Health works for the employer, not for you. But while it’s true that the occupational health doctor may not know much about PPS, on the other hand there is a possibility that he or she may have come across it before in an employment situation, as there are lots of us around! The occupational health doctor can make suggestions to the employer about accommodating your needs within the work place regardless of diagnosis. The Health and Safety people in a large organisation may also be able to make practical suggestions. It’s sensible to look at all options before deciding that ill-health retirement is what you want, partly because if you can be seen to have tried to adapt and make changes at work and are still having difficulties, that is ‘evidence’ of the need for ill-health retirement. The more understanding you gain of the way other people view things, the more clued-up you will become about the best way to present your own point of view. And the clearer you will become about what is best for you.

c) Dinah rightly says it’s worthwhile taking the time to get the unequivocal support of a consultant if you can, even if you have to ask your GP for a referral outside your home area. As some neurologists have doubts about PPS, an orthopaedic consultant may have greater practical understanding of your difficulties and the implications. Seeing a consultant privately might be quicker but doesn’t necessarily guarantee the results you want.

It’s probably true that pension managers will take a letter from a consultant seriously but in my own case, being unable to get written support from anybody relevant (other than verbal support from the occupational health doctor, who couldn’t act for me), I got confirmation from the pensions managers that ‘medical practitioner’ means your GP. In effect, the role of the consultant is to support and enhance what your GP says.

Whether you are seeing your GP or a consultant, make sure they are aware of how your circumstances and health have changed and if necessary provide evidence about how you used to be. No doctor has the right to doubt what you say about yourself, then or now, if you stand by what you are saying.

I would also suggest providing information about PPS for both the doctors and the

pension managers, but make sure the articles are pertinent to your own situation and keep information as brief as possible. Don’t be afraid to disagree with the doctors but be ready to give your reasons for disagreeing. Dinah makes the point that it’s not necessary to get a diagnosis of PPS to get ill-health retirement, but in the UK PPS has now been recognised by the Department of Health as a genuine long-term condition and this can be pointed out in cases where doctors are still suggesting it may all be a myth. The permutations of retirement/ ill-health retirement/ part-time work/ less stressful job etc. are different for everybody and different factors also come into play depending on whether you are applying for your pension from your present employer or from a previous employer. Or whether it’s a private pension from a financial provider. The key to success seems to be persistence and patience – don’t apply for the pension until you are sure you have all the information needed. Be clear not only about the pension scheme rules and how your situation fits the rules, but also as far as possible be clear about your own experience of polio and your past and present experience of its after-effects. Your truth about yourself is inviolable.

The Post Polio Awareness & Support Society of British Columbia, Canada is presenting a Post Polio Symposium in the spring of 2006. Location: Vancouver, B.C. Canada. Dates: March 30th to April 2nd 2006. Theme: Maintaining an Independent and Healthy Lifestyle. LincsPPN Life Member Marcia Falconer is a speaker NEUROINFLAMMATION, STRESS AND PPS SYMPTOMS: Marcia Falconer PhD., Virologist from Ottawa http://www.ppass.bc.ca/

Lincolnshire Post Polio Network, Polio and Post Polio News. February 23, 2006 – Welsh drop commitment on disability.

The Welsh Assembly has dropped its manifesto commitment to provide free personal care for disabled people after admitting that it could not afford its plans. Labour’s 2003 Welsh manifesto promised to introduce free care, after estimating the total cost at £50m over three years. But last week health minister Dr Brian Gibbons said new costings had shown that ‘we could not put in place our original plans equitably and affordably’. Instead a package costing £76m over the next three years will be created, following consultation. The Welsh Assembly government blamed legal issues over definitions of ‘free’ and ‘disabled’, and pointed to evidence from Scotland where demand for free care rose after it was introduced. The minister said funding would be targeted towards disabled people on the lowest incomes who paid for personal care.

Health Service Journal | Welsh drop commitment on disability. 23rd February 2006.

The original of the above article can be found at http://www.hsj.co.uk/nav?page=hsj.news.story&resource=4404983

http://mt.lincolnshirepostpolio.org.uk/archives/pandpp-news/001593.html

Cherish your arms, by Member Anne Wood

Accompanying photographs Page 24

Having been on the slippery slope of PPS for at least 15 years, I have amassed many short cuts, tips, etc. I’ve been jotting things down as I think of them, but so many ways have become second nature to me by now that it takes a bit of headscratching to think of them all and wonder if everyone does things my way or if I have developed strategic methods peculiar to me.

One of the biggest shocks to my system came when I realised that I had really overdone it after a particularly frenetic Christmas five years ago. My arms and shoulders didn’t recover like usual after the last minute shopping and wrapping on Christmas Eve. When The Day dawned I still felt exhausted and my arms were very sore….. just moving them or having them hanging by my sides hurt. I spent much of the day sitting down with my arms supported on pillows. I was getting really worried that the pain would be permanent, as I remembered years ago talking to another polio survivor whose arms ached most of the time.

In the following weeks my GP tried a variety of painkillers, but nothing was effective. I spent days at a time lying flat in bed with a heated pad under my shoulders, crying with despair, my depression deepening as I envisaged the rest of my life in a chair with my arms almost useless. Weeks turned into months with no improvement and my husband had to shoulder most of the housework, cooking and shopping as well as having to work from home, while I was miserably laid up. I could no longer drive, my social life had gone down the tubes, including my singing, and I had resorted to voice recognition in order to continue using my beloved computer. It was a thoroughly miserable time.

Eventually I saw my neurologist who told me there was a drug he used to treat epilepsy but which was also effective with neuropathic pain – Neurontin (gabapentin) – so he started me on a low dose. The pain began to ease as the dose was increased over several weeks, in conjunction with the other painkillers I was on – dihydrocodeine and Dosulepin (dothiepin). I tentatively began using my arms a little more, feeling hopeful, but still I was very careful and in fact it was over a year before I began driving again, after an assessment at a mobility centre to make sure I was safe behind the wheel with my limited strength. They recommended arm rests be fitted to my car, which gave wonderful support when driving. Looking back, I am sure that the deliberate rest I gave my arms for such a long time enabled me now to lead a more fulfilling life, albeit with restricted arm usage and careful pacing.

This long preamble is to show how seriously I took the deterioration in my arms and shoulders……losing leg strength is one thing, overcome to a reasonable extent by using a wheelchair and other adaptive equipment, but arms are even more precious. A home can be altered fairly straightforwardly to cope with wheels, but there is no device to take the place of arms and life is incredibly difficult when their use is lost. I am conscious of my arms at all times, they are at the forefront of my mind whatever I am doing…….. I never over-tax them either with movement or weight. To this end, I have various coping strategies which help my arms and, along with the enforced rest mentioned above, I haven’t needed to take the Neurontin for

over 2 years now.

One of the worst stresses arms undergo is lifting and carrying, and I look back ruefully at the years I spent pushing myself up from chairs and beds as my legs began to weaken. Currently I have a perching stool, a manual wheelchair, indoor and outdoor powerchairs, all set at just the right height for me to get up without using my arms, and a rare recliner armchair which raises me vertically without tipping me forward… see http://www.chessco.net . They don’t mention this chair on their website but it’s worth contacting them if you are interested.

I also have a powered cushion-lift www.mangar.co.uk/products/cushion which again raises me straight up and I can take this with me when traveling.

My bed, likewise, raises me the same way, as well as having a reclining mode – email them at tbs@thebedshop.co.uk I don’t go anywhere if I can’t take one of my wheelchairs as I need the armrests and one of my air cushions at my back to accommodate my scoliosis. The air cushions cost a few pounds in a camping shop and I tuck one, half filled, into a cheap cotton tote bag, or other lightweight bag with straps to put over the wheelchair arms. The tote bags are invaluable to carry shopping and I can hook any number on my chair…. I’m sure I must be known as the local bag lady, but I stopped worrying about that when it became necessary for me to take full responsibility for myself after my husband left me.

Also hanging off the arm of my chair is a tubular pencil case with a double zip into which I put my half-litre bottle of water, and I keep a mini umbrella on the back handle. In my capacious wheelchair bag I always keep a pocket urinal www.woodstockit.com/products/Uribag which is a complete unit, or a Whiz www.whizaway.com used in conjunction with my own one pint plastic screw-top milk bottle with handle.

Thanks to the wonderful Internet I can order bulk groceries from my local superstore, and I ask the driver to put the bags straight on to the kitchen table. I generally arrange for a friend to help me put them away, but if I’m on my own I put the goods on my kitchen trolley to move them nearer the fridge, cupboards, etc, pushing it with my stomach or sideways on with my hips.

Still in the kitchen, I slide heavy pots and pans across the worktops which are in a continuous run along the walls in an L-shape. I rest the edge of saucepans of cooked vegetables on the sink and slide the contents into a colander, rather than draining with the lid. [Editors note: Try using a chip pan basket in the saucepan, or lift larger veg out with a slotted spoon].

My kettle sits in a tilting stand and I fill it using a plastic jug. I eat in the kitchen and my perching stool is just the right height at the table – I either drag it or “walk” it to the right spot, and I can perch on it to work at the sink with the cupboard underneath open. If a table isn’t convenient for a wheelchair or perching stool, try fitting a tray into an open drawer to make a little table for one.

I have a washing “basket” on wheels to carry washing from the laundry bin to the

sink, then to the tumble dryer or washing line, and I have a peg bag on a hanger to hook over the line. If it hurts to bend down I can grasp the washing with a grabber, though this does place more strain on my arm. The grabber is invaluable for picking up dropped items ….. more and more things seem to end up on the floor these days as my grip isn’t so good …. and the little magnet on the end is useful. It can also reach up to shelves, though things I use on a regular basis I keep lower down.

I have a long-handled dustpan and brush and a wide cotton mop for quickly running over my parquet flooring which is so easy to keep clean. We ditched some of our carpets which had become stretched and rumpled from the wheelchair, and had the natural wood-flooring restored which is much more suitable.

I rarely iron, but I bought a little travel iron very cheaply and it is extremely lightweight for the odd item needing a press. It can be painful hanging heavy clothes in the wardrobe, but getting them down is easier if you can slip the item off the hanger first then retrieve the hanger on its own, rather than lifting the laden hanger up over the rail.

I am right-handed and because my left shoulder is paralysed I’ve greatly over-used my right arm, so I try to use my left arm instead when carrying anything small such as a book or hot water bottle. I tuck it right up under my armpit so the dead weight of the arm keeps it there. If it’s a little too heavy I grip my waistband or pocket with that hand to take the weight off the straining arm muscles.

I try to avoid my arms hanging loosely at my side because of their weight, so if possible I rest them on something or, again, tuck them into my waistband or pocket. A note of caution here – don’t walk with hands in pockets if you are prone to falling as your reaction time may not be quick enough for you to break your fall with your hands: it could be worse to injure your head or face than an arm.

Holding a telephone to my ear is impossible for more than a few seconds and I wouldn’t manage without my headset which I keep plugged into the phone. They aren’t cheap but are essential for me. The phone is a cordless model and I have two so that one is charging while the other is kept in my pocket or clipped on to my waistband. At night I put the phone on my bedside table.

Also inseparable from me is my Community Alarm button worn round my neck, which I can press for help in the event of a fall. My local council supplies this for a small monthly charge. In the dark evenings I have more than one light on so that when a bulb blows I’m not in total darkness; I have a battery light or torch in most rooms for the odd occasion when there is a power cut.

It took me a long time to work out a comfortable way of using my computer – even the occupational and IT therapists weren’t very helpful. I park my indoor wheelchair as near to the desk as the control will allow, then I rest a beanbag tray on the arms of the chair and the desk, put the cordless keyboard on the tray and I use the cordless mouse on the tray in front of the keyboard. I have a lightweight flat screen monitor which is very easy to move around. The beanbag tray is useful for many activities when one might sit at a table, and I also take it to choir practice to rest my

music on.

[Editors note:- another idea is to work from your recliner/electric rise recliner chair. Either with a laptop on your lap, or some PPSers put all their computer gubbins on a wheeled trolley and park this by the recliner chair and use a beanbag on their lap for the keyboard. The trolley can be pushed out of the way or into a bedroom/ garden room, allowing computer use at different times/places]

I’ve just splashed out on having my bathroom turned into a wet-room with a levelaccess shower and it’s bliss to relax on my adjustable bathroom stool, instead of having to clamber into the bath in order to have a not-too-safe shower. My new toilet has a built-up base, [Editors note, I had a much higher toilet base fitted so I did not have to use the booster seat] and with my smaller 4 inch booster seat is just the right height. I opted for a lever action for the flush rather than a button so that I could operate it with my elbow, and in fact my builder ordered a wide paddle especially for that purpose. I wouldn’t be without my electric toothbrush as it saves all that back and forth movement which is so tiring.

I am very fortunate to have a south facing, beautiful terrace outside my kitchen with level access through French doors, and raised flower beds which are just the right height for me to work on them. Gardening is wonderful therapy when it’s not too arduous and as my terrace is covered I can work or sit out there even when it’s raining. I plant up lots of pots which are moved around according to what’s currently in flower, courtesy of visiting friends. A good tip to keep your garden in colour or interest throughout the year is to visit a garden centre once a month and buy one or two plants which take your fancy at that particular time of year. My terrace is my pride and joy and I revel in the compliments given me.

My digital camera beautifully captures the changes in my terrace throughout the year and I can recommend a great place to store your digital images….. go to Google, click on More and scroll down to Picasa – a free place to find, edit and store your photos, and it is very easy to use.

All these ideas help make my life a little easier, and I hope some of them will be helpful to you now or in the future.

I am sure others have many more ideas, share them with us, and know that at least one other member will be saying, ’Why didn’t I think of that?’

Anne Wood January 2006 Anne <poglet@BEEB.NET>

26th January 2006 we learned of the passing of Member Raymond M Owen.

Our condolences to his family and friends. His continued support for our organisation was greatly appreciated.

COMFORT HINTS—Air Cushion and Apron from Viola Pahl

Air Cushion—The usual air cushions don’t last all that long, so my husband came up with the idea of using the inner tube of a wheelbarrow wheel. I covered it with fake fur, also putting a strip of fur for a small handle so it could be easily carried from place to place. I have not had to put air in the cushion for two years – and it doesn’t need air replacement as yet. Earthquakes can have an unexpected effect on air cushions, though! I was sitting on the air cushion when it began to rock and roll like a water bed. After a minute or two, my knickknacks began to rattle on the glass shelving. The earthquake was east of Seattle – and we are at least 90 miles away. I phoned the seismologist and he said the reason for the agitated air cushion was that the air was trying to escape. So – just hope that if there is an earthquake near you, that you experience nothing more than the shaking of your air cushion.

Apron – Here is my idea for keeping things within easy reach when you’re in a wheelchair. A good old-fashioned apron, to which I have added pockets of varying sizes, which will take things like your mobile phone, pen and paper, keys, scissors, cutlery etc. As the pockets are going to be supported on one’s lap most of the time, it’s possible to use something like ‘Wundaweb’ in order to stick them into position, especially if you’re ‘sewing challenged’ like me!

Requirements:

1 Apron – Material for making the pockets – Pins

Wundaweb (or similar) – Iron and damp cloth

Once you have decided on the size and shape of your pockets, cut them out from the material. Fold rough edges inwards and pin on strips of Wundaweb cut to size. Spread apron out flat, place ‘wundawebbed’ pockets into position. Place a damp cloth over the pocket (I recommend doing one at a time!). Using a hot iron, press pocket until firmly attached. Leave to cool before tackling the next one. Remember to remove pins! If you are more adept, then simply sewing the pockets on does provide a stronger result!

Dear Post-polios,

I am an established writer at the start of some major research for a book looking at my parents’ life together from the time that my father got polio in 1952 and TB some time later, how it affected our family life together and the realisation, much later, that polio never really is ‘got over’ but can reappear in the guise of PPS.

My father died in 2003 aged 76, telling us very little of his decade of illness despite having been a wheelchair user for fifty years. My mother is fit and well and has encouraged me to write their story but there are large gaps in her memory. If there is anyone who remembers my father, had experience of the hospitals he was in, knew any of the medical or nursing staff, or has any memories triggered by the names, places and events outlined below, I should be very grateful if you would like to get in touch.

Prockter Pulman (also known as Push, PT or Pete) spent the early part of 1952 training for selection for the Helsinki Olympic Rowing team. He failed selection but he and his partner beat the selected pair later and was expected to be a serious contender for the 1956 Olympics. He took a new job at Muntz Engineering, married Diana Latta in September 1952 and became ill with polio late October where he was taken to the Uxbridge Isolation Hospital (possibly now Hillingdon Hospital). After 8 weeks he was moved to The London Hospital (now the Royal London) in Mile End Road. He was in the orthopaedic section,

Hanbury Ward and the Ward Sister there was Anne Johnson (still a family friend). The physiotherapist was Wendy Hillier. He was there for nearly two years.

Sometime in 1954 he was being measured for callipers and was getting fit enough to try walking (particularly tricky as he was six feet and four inches tall) but he developed TB and was moved to the London Hospital Annexe in Brentwood, Mann Ward. Treatment for TB was the opposite for polio, all the physio sessions had to stop and instead he had to have complete bed rest. He had streptomycin treatment but his legs were too wasted to inject so every injection was in his arms which became very ulcerated. Strep. had ‘bad batches’ which my father unfortunately experienced but I have no idea what the result of ‘bad’ strep.was Has anyone knowledge of polio and TB together?

Eventually, my father went to Stoke Mandeville which was under the direction of Dr Ludvig Guttman, the founder of the para-Olympics. His treatment was heralded as revolutionary in technique and certainly had a good success rate but my father said he and his team were pretty brutal. I’d particularly like to know about this regime. While at Stoke Mandeville he was encouraged to practice archery. He made friends with a fellow wheelchair user called Jim (no surname) who was in the RAF (my father too had been in the RAF and in the Berlin Airlift). Jim was interested in observing how arrows and bowstrings behaved in flight. Together they designed a photographic devise to capture these images. I have a letter and photographs of Jim and my father shooting arrows under a score board for 1955. The letter from Jim is written shortly after his release from Stoke Mandeville and he is staying at the Officer’s Mess, RAF, Headley Court, Nr. Epsom. I would love to find out who Jim was. He talks about a woman! called ‘Coach’ at Stoke. Any ideas? Jim was also interested in Aeromodling and had a mutual friend called Dick (also known as Wicky) Higham.

Other facts about my father might help jog some memories. His family home was at Thelveton in Norfolk, he had a scholarship to Cambridge before the war and studied engineering then went up again after the war and did an MA in Business Law. He rowed for London Rowing Club, the RAF and Leander RC before he was ill. He was immensely tall, fair haired, had a black front tooth and was very, very funny, in fact I’m told by Anne Johnson that he had the medical staff in despair because of all the elaborate practical jokes and stunts he would pull. He sounds rather a liability to have on a ward and if you were with him you might remember him because of the chaos he caused!

Finally, if anyone would be prepared to speak to me about what they remember about the first few days of onset of the disease and about the years of rehabilitation, I should be very grateful.

Although my father was almost completely paralysed at one point, he never had to use an iron lung, which was a mercy. He regained his mobility to waist level, minus his thumbs. He had his own successful research and development engineering consultancy, raised me and my brother, provided more than adequately for his family and maintained a strong marriage with my mother until his death. He was a powerfully patriarchal figure with a huge character, very controlling, sometimes very frightening, highly motivated and expected the same from everyone around him. I had a sometimes very prickly relationship with him but I think he would be pleased to know that I was doing this and it is with the complete cooperation of the rest of the family. I miss him like crazy and want to do him proud.

Please contact me, Sarah Passingham, by email: sarahpassingham@btinternet.com

Or write via our main address putting Sarah’s name on the bottom left hand corner of the envelope and we will pass the letter on to her.

Hypoventilation? Obstructive Sleep Apnea? Different Tests, Different Treatment.

Judith R Fisher, MSLS, Editor

Ventilator-Assisted Living. Fall 2005, Vol 19. No. 3

Reprinted from Ventilator-Assisted Living with permission of Post-Polio Health International (www.post-polio.org). Any further reproduction must have permission from copyright holder.

People with neuromuscular disorders may be misdiagnosed and mistreated when they encounter breathing and sleep problems. Many general practitioners, and even some pulmonologists, neurologists and sleep physicians, may not fully understand respiratory insufficiency in this group.

Hypoventilation. Generally, in people with neuromuscular disorders who are having breathing problems, the main problem is hypoventilation (underventilation) – not breathing deeply and/or often enough. Muscle weakness, scoliosis and/or chest wall stiffness make it difficult or impossible to fully inflate the lungs.

Hypoventilation results in an imbalance in the carbon dioxide (CO2) and oxygen (O2) exchange in the blood—too much CO2 is retained, too little O2 is taken in. Because hypoventilation usually first occurs during sleep and because several of the signs and symptoms overlap, it can be misdiagnosed as obstructive sleep apnea (OSA).

Although any trained health care professional can perform simple pulmonary function tests (PFT’s) of breathing ability during an office visit, the tests are most likely to be performed by a pulmonologist, neurologist, nurse or respiratory therapist. The challenge lies in understanding the results of these tests in the context of a person with neuromuscular disease.

Two important measurements of your ability to breathe deeply are the forced vital capacity (FVC) and maximum inspiratory pressure (MIP or PiMax). The SNIP (stiff nasal inspiratory pressure) test has been shown, in some studies, to be a more sensitive test of respiratory muscle weakness, but it is not widely used in the USA.

Forced vital capacity measures the volume of air you can breathe in and then blow out quickly and completely through a device called a spirometer. It should be measured in both the upright and supine (lying face-up) positions, because you can’t breathe as efficiently lying down.

Another simple test that measures the strength with which you can breathe in is the MIP. A mouth piece is attached to a negative pressure gauge via a narrow tube. With a nose clip pinching off the nostrils, you exhale and then suck on the mouthpiece as hard as possible; the gauge registers the pressure.

A result of <50% predicted FVC (Forced Vital Capacity) or a MIP (Maximum Inspiratory Pressure) <60cm H2O may signal that it’s time to get some assistance with breathing.

However, the most important factor in diagnosing hypoventilation is an elevated level of CO2 (above 45mm Hg). This can be measured invasively with an arterial blood gas (ABG) analysis or noninvasively using exhaled end-tidal CO2 monitoring or transcutaneous CO2 monitoring.

The pattern seen on an overnight oximetry tracing may also be helpful for identifying early hypoventilation often seen first during the deepest rapid-eye movement (REM) sleep stage.

Signs and symptoms of nocturnal hypoventilation may include one or more of the following:-

♦ Fatigue or exhaustion after normal activity;

♦ Excessive daytime sleepiness;

♦ Shortness of breath, breathlessness with minimal activity;

♦ Claustrophobia or feeling that air in room is somehow bad;

♦ Difficulty in speaking for more than a short time;

♦ Quiet speech with fewer words per breath;

♦ Inability to lie flat while awake due to shortness of breath;

♦ Inability to life flat during sleep/need sitting up (orthopnea);

♦ Trouble falling asleep and trouble staying asleep;

♦ Anxiety about going to sleep.

Other signs and symptoms, which may also be seen in OSA, (obstructive sleep apnoea) include:-

♦ Excessive daytime sleepiness and need to nap during the day;

♦ Nightmares, night sweats, bedwetting, or need to urinate frequently;

♦ Morning headaches;

♦ Restless/fragmented sleep with frequent awakenings;

♦ Shallow breathing or cessation of breathing for 10 seconds or more;

♦ Awakening from sleep with choking sensation;

♦ Worsening mental status, impaired memory, concentration, cognition.

Do not ignore these signs and symptoms hoping they will go away. They are serious. You may need evaluation and treatment immediately!

The treatment for hypoventilation is NOT oxygen but assisted ventilation, generally at night with a bilevel ventilator. Bilevel units that offer the S/T mode (the unit operates in a spontaneous—S—mode, meaning the user can spontaneously initiate each ventilator breath, but switches to a timed—T—mode, referred to as the backup rate, when breaths are not initiated by the individual) are recommended for people with neuromuscular disorders.

Bilevel ventilators provide pressure support ventilation which is achieved by the difference in two set pressures; IPAP (inspiratory positive airway pressure) and EPAP (expiratory positive airway pressure). The IPAP and EPAP pressures settings can be adjusted separately.

People with neuromuscular disorders have more trouble breathing in. They generally need IPAP that is set at least 5-10cm H2O higher than EPAP and EPAP that is set at the minimum level. Higher EPAP makes it too difficult for them to exhale. “In my home care company, we start out people new to bilevel with ‘training wheels’ – a minimum span of 5cm H2O. After they become acclimated to the treatment, we increase the span if the individual is more comfortable and/or needs more volume”, says Diana Guth, RRT.

For reimbursement of a bilevel unit in the USA by Medicare, the requirements are a diagnosis of a progressive neuromuscular disorder, absence of chronic obstructive pulmonary disease (COPD) or if present it does not significantly contribute to the individual’s respiratory limitations, and one of the following test results:-

• FVC <50% of predicted.

• MIP <60cm H2O,

• PaCO2 arterial blood gas >45mm Hg.

• Nocturnal SpO2 (oxygen saturation)

• <88% for five continuous minutes while asleep.

Obstructive Sleep Apnea (OSA)

Apnea is the cessation of airflow for more than 10 seconds. OSA occurs when tissues in the throat collapse, intermittently blocking airflow during sleep. Snoring is often a major indicator of OSA, but not always.

A sleep study (polysomnogram test or PSGT) is primarily used to determine and design treatment for individuals with OSA. A sleep study is not absolutely necessary for the diagnosis in people with neuromuscular disorders but it may be helpful when first introducing bilevel treatment.

The main breathing problem is almost always hypoventilation, although people with neuromuscular disorders early on may also have undiagnosed OSA. Most sleep labs are not equipped to measure CO2 levels, and therefore cannot diagnose hypoventilation.

The standard treatment for OSA is continuous positive airway pressure (CPAP) to help keep the airway open or a bilevel unit without a backup rate.

Thanks to Josh Benditt, MD, University of Washington, Seattle. benditt@u.washington.edu); Peter Gay MD, Mayo Clinic; Diane Guth, RRT, Home Respiratory Care, Los Angeles (Diane@hresleep.com); E.A. Oppenheimer MD (retired) Los Angeles; and Jesper Qvist, MD Respiratory Centre East, Copenhagen, Denmark (jq@dadlnet.dk) for their assistance.

http://www.orthoticmobility.com/steppers.html

It walks with you!

The Stepper® product line includes both Sure Foot® and Sure Step® canes with attachments and varying sizes available. Each utilizes a skid-resistant sole with a traction surface of 18 square inches — much larger than the small tip on traditional canes (1 to 2 square inches). The Stepper’s sole remains flat on the walking surface regardless of how it is placed, and the patented ankle has a shock absorber to soften the impact on the user’s hand and arm.

These revolutionary, user-friendly products are lightweight and able to stand alone. They provide added stability, greater accessibility and convenience not offered in traditional canes. The Sure Foot and Sure Step are the world’s only stand-alone canes with an ankle that “walks with you.”

Steppers are constructed of aluminum and stainless steel. They are fully adjustable and very lightweight. A 90-day warranty (parts and labor) is included. Typically, using a cane requires a person to be cautious about where the tip is placed, restricting where it can be used, and increasing the chance of a fall and injury. This isn’t so with a Stepper! They can be used on most walking surfaces, including stairs, snow, grass and stones. The slid-resistant 3″ by 6″ base of a Stepper will take you where you need to go. In fact, users often describe the Stepper as an extra leg and foot.

[Sandra Cuadra visited me and showed me her arm crutch. ‘Gosh’ I said, ‘the foot plate looks more disabled than a ferrule’ to which we both laughed. I tried hers and was very surprised at how much easier it was for me to walk and stand still. To give a cane/crutch an ‘ankle joint and foot’ was a great idea, and it is really good on sand and rough ground. I ordered my own and am very pleased with them—Hilary]

MSRP

Sure Step $59.95 Sure Foot $69.95

Sure Foot FA $109.95 (single) Sure Foot FA $189.95 (pair)

Hydrotherapy by Mary McCreadie.

‘I think we’ll try some hydrotherapy and an AFO before we go down a surgical route’, said my new Orthopaedic Surgeon. Not only has he seen and treated polio victims in the initial stages of the disease, but he actually knows about PPS. He is concerned that the problems with anaesthetics and recovery from surgery with PPS patients, coupled with the danger of actually making things worse, outweigh possible advantages. Finally getting to a doctor who knows about PPS, was rather like winning first prize in the Lottery!

I thought it would be months before I got an appointment for the hydrotherapy – but within a week, I was called to go for a preliminary examination by the Neurological Physiotherapist. I rather came down off my little ‘cloud 9’ when I met this lady. She was a touch heavyhanded, and her perfunctory examination (which didn’t include actually looking at my polio leg) made me somewhat apprehensive. Questions like: ‘Well WHY can’t you do….’ this, that or the other, didn’t help either. She admitted that she had never heard of PPS – but told me that having done a little research on the internet, she now knew all about it. Guess which site she looked at? Yes – ours!

As the doctor had suggested trying an AFO (ankle, foot orthosis) for me, the Physio brought me an ‘off-the shelf’ one to try, shoved it on me and sent me on my merry way. WARNING! Don’t ever let anyone do this! AFO’s must be fitted properly, although I didn’t realise this at the time. The idea is fine, but a) my foot is too twisted to accommodate an AFO, b) my boots were too shallow to take my foot and the AFO. c) the part of the AFO which runs up the back of the heel was the wrong size for me and cut in badly, so by the time I got half way back home I was in serious trouble with it. My foot had swelled so much I had great difficulty in getting my boot off, and my knee had swelled to football-like proportions. I did try the AFO again, but with the same result. So that went back, and I now have an appointment for a proper fitting.

My first dip in the water came a few weeks later. I arrived in plenty of time – time enough to start worrying about how I would get from changing cubicle to the water, how I would get in and out of the pool – you name it, I worried about it! But I needn’t have done. I was able to drive my scooter to a cubicle ‘pool-side’, which was big enough to accommodate both the scooter and me, and once I had changed into my swimming costume, was ready for the pool. The attendant pulled back the curtains, and brought a hoist (which looked rather like an enormous sun-bed on a pole) right to me, so that all I had to do was get myself onto it. The attendant helped by lifting my legs up for me, and once settled, the whole thing was wound up and around and then down – very slowly and gently – into the water, where the Physio was waiting for me.

Her attitude towards me changed dramatically when she actually saw my leg. I wonder whether she had secretly thought I was ‘making it all up’, and had been expecting a perfectly normal leg….

I will never forget the delicious feel of the warm water – first time I’ve been immersed in water for nearly 10 years! I didn’t have to actually do anything. The Physio supported my neck and back with floats, and proceeded to do what she called ‘sea-weeding’ for about 5 minutes. ‘Sea-weeding’ involves being held by the shoulders and being wafted from side to side. The idea is to loosen and stretch muscles in one’s back, and to get sideways movement at the waist. Initially, not much appeared to happen, other than I became extremely tired. I was then asked to stand holding the rail, and to stretch up to make myself as tall as possible. After a couple of stretches, my time was up and it was back to the hoist to be lifted out and back into the cubicle. After dressing again (which took me ages!), I was given an appointment for the following week, and I got back on the scooter to go and get a well-earned cup of coffee before going home.

Although tired by the hydrotherapy, I was feeling pretty good. But after a 30 mile journey back home I began to feel the effects. The following day I was very, very stiff and uncomfortable – not what I had expected – and it took a couple more days to get over the effort.

The second appointment was far more rigorous. I was in the water for about 20 minutes, did more of the ‘sea-weeding’ and then the Physio started to push and pull me about – albeit fairly gently, with the idea of getting my leg straighter. (I have a flexion contracture of the knee, unstable valgus of the ankle, and my foot is drawn up tight under the arch.)

I did try to get the Physio to understand that I was finding the manipulation of my leg too painful – but she thought it was necessary and ‘a bit of pain’ was only to be expected. I’m not too good at standing up for myself when pushed like this, and didn’t feel able to argue. I wish I had. The consequence was that I spent the next few days in bed through exhaustion and pain, and had to cancel the next appointment. That did not go down very well! However, another appointment was arranged for the following week, and we went back to doing the very gentle work done in the first session. I have a break for three weeks now, as my Physio is away, and then I shall have one or maybe two more sessions.

Results from all this? I have to say that there has been a slight reduction in pain – but more importantly, I am finding that I can sit just a bit straighter in my wheel-chair – which in turn, helps with lessening pain. So all in all, there has been some benefit, but whether it will last, I can’t say. Was it worth all the effort? Bearing in mind that each session cost me at least two days of enforced inactivity to recover, it was expensive in time, but any reduction in pain has to be good.

I think it is important to realise that for PPS patients in particular, going for hydrotherapy is not like a well person simply ‘going for a dip’! We need to consider the effort that will be involved quite apart from the actual therapy. In my case, I had to:

a) get the scooter ready and in the car the previous day.

b) drive 30 miles to the hospital.

c) off-load the scooter, and drive to the Physiotherapy department

d) get changed ready for the pool.

e) have the therapy.

f) get dressed again

g) drive back to the car and re-load the scooter

h) drive 30 miles back home.

If you have the chance to go for this treatment, I would still recommend that you take it if you feel you can. Who knows? You might well benefit.

Mary McCreadie

[Editors Note—Back over seven years ago I was offered four weeks hydrotherapy. All ten in the pool had to do the same exercises, regardless of condition. It was do 10, do another 10. Although I knew a bit about PPS by then I did not know enough and assumed that their ’I know about PPS’ meant that they did. I got a lot of pain/fatigue from the sessions and in fact found out later that two of the exercises were totally contraindicated for the weak muscles in one leg.. Now with my Advanced Swimming Teacher hat on—Warm water and gentle stretching and gentle exercise, that takes into account your Polio body and which muscles can do what and how often, can be very good for you, provided you have the energy from your daily use to do all the getting there and undressing/dressing etc. Listen to your body, write it down and try and get the therapist to work with you to get the most out of the sessions. Therapists are taught to count in 10’s, and many find it hard to be asked to work with other numbers. I am good at 3 sets of 3 repeats with rest in between but push me to five repeats and I am in pain and can do no more.

Good Luck. Hilary Hallam, F.I.S.T.1,F.I.S.T.{LS2}] 1 Fellow of the Institute of Swimming Teachers. 2 LifeSaving.

Back page pictures by Mary McCreadie.

Imagine coming home late on a February afternoon, tired and gasping for a cup of tea – only to find that the Highways Department who have been resurfacing pavements in your area, have knocked off early and left your gateway in this condition! It was known that I was disabled, and we’d had quite a bit of discussion about the problem of access. Not only could I not get over the impossible ‘surface’, I couldn’t even move the bollards!

I was absolutely furious! It took some little time to find one poor little JCB driver who had made the mistake of returning to his vehicle to fetch something he’d forgotten – only to be faced with a very irate me! He came and surveyed the scene, scratched his head and said

‘Well………dunno what we can do ‘bout it…..I s’pect foreman’s gone ‘ome.’ Foreman had indeed gone home, but the driver did manage to find the number of the depot for me. So, I rang and spoke to a chap who immediately organised a gang to come out and try to make it possible for me to get back into my home. They arrived half an hour later armed with several buckets of quick-setting tar to try and smooth things out for me. NOT very successful! But with great good humour on all sides, two of them lifted me over the mess and I at least got back into my home. The following morning, everything was put back to rights, and one of the workmen knocked on my door to ask me to come and see how beautifully they had rolled the new pavement – extra smooth, just for me!

N.B. I don’t really have the wheelchair sign on my gate at the time – it’s just a bit of computer flap-doodle for fun! But, I will put one up in the future if I know this is likely to happen again.

TOILET CLEANING INSTRUCTIONS.

1. Put both lids of the toilet up and add 1/8th cut of pet shampoo to the water in the

bowl.

2. Pick up the cat and soothe him while you carry him towards the bathroom.

3. In one smooth movement, put the cat in the toilet and close both lids. You may

need to stand on the lid.

4. The cat will self agitate and make ample suds. Never mind the noises that come

from the toilet, the cat is actually enjoying this.

5. Flush the toilet three or four times. This provides a “power-wash” and “rinse”.

6. Have someone open the front door of your home. Be sure that there are NO

people between the bathroom and the front door.

7. Stand behind the toilet as far as you can, and quickly lift both lids.

8. The cat will rocket out of the toilet, streak through the bathroom, and run outside

where he will dry himself off.

9. Both the toilet bowl and the cat will be sparkling clean.

Yours Sincerely, THE DOG.

No Nursing Home for Me—Author Unknown

About 2 years ago my wife and I were on a cruise through the western Mediterranean aboard a Princess liner. At dinner we noticed an elderly lady sitting alone along the rail of the grand stairway in the main dining room. I also noticed that all the staff, ships officers, waiters, busboys, etc., all seemed very familiar with this lady. I asked our waiter who the lady was, expecting to be told that she owned the line, but he said he only knew that she had been on board for the last four cruises, back to back.

As we left the dining room one evening I caught her eye and stopped to say hello. We chatted and I said, “I understand you’ve been on this ship for the last four cruises”. She replied, “Yes, that’s true.” I stated, “I don’t understand” and she replied, without a pause, “It’s cheaper than a nursing home”.

So, there will be no nursing home in my future. When I get old and feeble, I am going to get on a Princess Cruise Ship. The average cost for a nursing home is $200 per day. I have checked on reservations at Princess and I can get a long term discount and senior discount price of $135 per day. That leaves $65 a day for:

1. Gratuities which will only be $10 per day.

2. I will have as many as 10 meals a day if I can waddle to the restaurant, or I can

have room service! (which means breakfast in bed every day of the week).

3. Princess has as many as three swimming pools, a workout room, free washers

and dryers, and shows every night.

4. They have free toothpaste and razors, and free soap and shampoo.

5. They will even treat you like a customer, not a patient. An extra $5 worth of tips

will have the entire staff scrambling to help you.

6. I will get to meet new people every 7 or 14 days.

7. T.V. broken? Light bulb need changing? Need to have the mattress replaced? No

Problem! They will fix everything and apologize for your inconvenience.

8. Clean sheets and towels every day, and you don’t even have to ask for them.

9. If you fall in the nursing home and break a hip you are on Medicare; if you fall

and break a hip on the Princess ship they will upgrade you to a suite for the rest of

your life.

Now hold on for the best! Do you want to see South America, the Panama Canal, Tahiti, Australia, New Zealand, Asia, or name where you want to go? Princess will have a ship ready to go. So don’t look for me in a nursing home, just call shore to ship.

PS – And don’t forget, when you die, they just dump you over the side at no charge.

– o – o –

Fifteen days ago, I read that smoking can kill you; the next day I stopped smoking. Twelve days ago, I read that too much red meat can kill you; the next day I stopped eating red meat. Eight days ago, I read that drinking can kill you; the next day I stopped drinking. Yesterday, I read that having sex can kill you; this morning I stopped reading.

Members E-mail Forum by Mary McCreadie

The last couple of months have seen a really big increase in the number of postings to the email forum, which is very gratifying! Welcome to LincsPPN, member James Pullin – great to have you aboard!

Subjects discussed since the last Newsletter have again been diverse and interesting, as well as being very helpful. Remember if you do not have access to the Internet you can always write and ask me the question and I will put it on the list for you. Write to the Lincolnshire Post Polio Network address on page 2 and put “For Mary McCreadie” on the bottom left hand corner of the envelope.

So here’s a brief look at some of the questions that raised the most responses:

Q – Anybody know of a good neurologist/doctor/health professional? “I finally got to see an orthopaedic surgeon, after waiting nearly two years. I had been absolutely dreading going to see him, as previous experience with neurologists has been so horrible. I took some pps literature with me just in case he was one of those doctors who would argue about the diagnosis. This man was a delight, and knew not only polio but was well aware of pps and all the ramifications.”

“I am mostly a person looking at the positive, but it makes me angry that we have to sit and worry in advance about consultants and their moods. (The consultant) was rude in his manner with me and I just had enough of it all and I lashed back at him. Told him I do not work for him and IF they are afraid of him it is their problem. I heard the collective breath being sucked in and he stared at me and then cracked a smile, from there on we became good buddies until he retired. I prefer peace and quiet. Upsets make me feel off for days afterwards so I avoid them like the plague where I can.” “It is difficult recommending any health professional unless you have had experience with them yourself and have had help, although that in itself is not enough as you might have totally different problems from other folks.”

Note: We are considering the possibility of compiling a list of neurologists, surgeons etc. who have proved helpful to our members. However, we know from past experience that there are a number of significant issues that have to be addressed first. In the meantime, if you have had a positive experience, do please continue to share that with other members on the list.

Q – What are your experiences of being out and about on a scooter/wheelchair? “…at first the electric wheelchair seemed very daunting to accept. NOW? I will not change it for anything.”

“I’m glad that I’m not on my own in feeling angry and resentful when pushed in a manual. Another thing I’ve remembered is that the pusher seems to have no idea of where in space our feet and the footplates end and I keep having to keep an eye on other people’s legs, and steering myself away from obstacles – which we can avoid perfectly well when in control of a power chair.”

“I hated my first time being pushed in a Manual Chair, all those bus exhausts and wheels the same height as you, and cars that seemed to be coming at 90 miles an hour.. and kerbs and the clunk as you came off the kerb.”

“Did you know that you can get electric controls that also go on the handle of the electric chair so that someone can push and steer you if you are in a crowd where you can’t see enough.. or if you get tired…. YOU control when you want to and let someone else take over when necessary.”

“I find that when I am on my portable electric scooter people are very pleasant, holding doors open, letting me through and even admiring the scooter and wanting to ask about it!….. When you are on a scooter it is obvious that you are OK apart from your legs, whereas when you are in a wheelchair there could be anything wrong with you – does he take sugar syndrome!”

One question which brought a flood of replies (if you will pardon the pun!) was about portable loos! Anyone disabled is going to have a problem at some time or another, so this question was really helpful:

Q – Help! My daughter’s house has 24 stairs – in stages – to the bathroom, so I am in need of a Porte Jane. Please could someone give me a website?”

“I got two kinds, courtesy of my GP so didn’t have to pay for them. One is called the Whiz www.whizaway.com and is a funnel type which you direct into, in my case, a 1 pint plastic milk bottle with a screw top lid! You have the option of asking someone to empty it down the loo, or taking it home with you The other is the Uribag www.woodstockit.com/products/Uribag which contains granules. They turn solid when the urine hits them and it will hold quite a lot. You dump the bag when full. I also bought another one called a Traveljohn on the internet from ‘www.betterlifehealthcare.com’”

“I believe Tesco sells the Traveljohn – ring a few supermarkets to find out. Alternatively, your chemist might even have one or other of the above, in these more enlightened times.”

“How about a commode that you take with you?”

“Just type Toilet Frames + Portable into an internet search engine and go look at what’s available. I did not have the time to look today at more than a couple but what I would like is something that can be folded and put in the car…”

“UK Benefits Now Shop have ‘Folding Commodes’ the most expensive of which appears to be height adjustable (see http://www.benefitsnowshop.co.uk/). While it appears the site offers quite a range of disability aids, although some items look good value, a lot of items seem quite expensive to me.”

This was just a small selection of the questions and replies and it’s great to see our e-mail forum fairly buzzing!

We are looking forward to many more of our members joining in the discussions, so please – if you would like to join the list and are a paid-up member of the LincsPPN, send an e-mail to

join-pnl@lincolnshirepostpolio.org.uk

(please include your full name in the email).

Mary McCreadie, List Facilitator. mary.mccreadie@lincolnshirepostpolio.org.uk

A Caregivers Bill of Rights – Author Unknown

I have the right….

1. To take care of myself. This is not an act of selfishness. It will give me the

capability of taking better care of my loved one.

2. To seek help from others even though my relative may object. I recognize the

limits of my own endurance and strength.

3. To maintain facets of my own life that do not include the person I care for, just

as I would if he or she were healthy. I know that I do everything that I reasonably

can for this person and I have the right to do some things just for myself.

4. To get angry, be depressed and express other difficult feelings occasionally.

5. To reject any attempts by my loved one {either conscious or unconscious} to

manipulate me through guilt and/or depression.

6. To receive consideration, affection, forgiveness and acceptance for what I do

from my loved one for as long as I offer these qualities in return.

7. To take pride in what I am accomplishing and to applaud the courage it has

sometimes taken to meet the needs of my loved one.

8. To protect my individuality and my right to make a life for myself that will sustain

me in the time when my loved one no longer needs my full-time help.

9. To expect and demand that as new strides are made in finding resources to aid

physically and mentally impaired persons in our country, similar strides will be

made towards aiding and supporting caregivers . 10.To be myself.

Caregivers Tips.

1. Be good to yourself. Love, honour and value yourself. You are doing a very hard

job and deserve some quality of time just for you.

2. When people offer to help, accept the offer and suggest specific things that they

can do to help.

3. Seek support from other caregivers. There is great strength in knowing that you

are not alone.

THREE TIPS TO HELP IDENTIFY IF SOMEONE HAS HAD A STROKE

Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer brain damage when people nearby fail to recognize the symptoms of a stroke. Now doctors say a bystander can recognize a stroke by asking three simple questions:

1. *Ask the individual to SMILE.

2. *Ask him or her to RAISE BOTH ARMS.

3. *Ask the person to SPEAK A SIMPLE SENTENCE (Coherently) (i.e. . . It is sunny out today) If he or she has trouble with any of these tasks, call 9-1-1 [999] immediately and describe the symptoms to the dispatcher.

After discovering that a group of non-medical volunteers could identify facial weakness, arm weakness and speech problems, researchers urged the general public to learn the three questions. They presented their conclusions at the American Stroke Association’s annual meeting last February. Widespread use of this test could result in prompt diagnosis and treatment of the stroke and prevent brain damage.

A Message to our Caregivers… by Hilary Hallam

We know we are stubborn, determined and often pigheaded. We know there are aids and assistive devices out there that might make our lives easier. We know that you, other family members and friends would be only too pleased to help us with tasks that are now more than we can manage.

We know all these things BUT we do not want to own or accept them. This is why we won’t discuss them or even consider them. As we recovered from our polio we were told, ‘no pain, no gain’, ‘use it or lose it’, and we had to push ourselves constantly to prove that we could do all the things that we were being told ‘would be too much for you’. To make a change seems to us like a backward step, seems to us as if we are giving in, that we are becoming old or that dreaded word ‘disabled’. Health professionals and you, our caregivers, can tell us till you are blue in the face that it will make our life easier, but we have to do this when we are ready and we need you to understand this.

Those of us who have progressed through the first stages of accepting PPS have been surprised that whilst it was hard to use, and be seen to use and go on being seen to use, those aids and assistive devices, the energy they saved allowed us to do so much more. What seemed like a backward step in our lives was actually a forward step to managing life and getting more out of it. Hard to admit, but it is true. We still don’t like using the aids and equipment but we do so enjoy the improvement to our daily lives. [If many of us are honest we will admit that we tried canes, crutches and wheelchairs for the first time when we were away from home, far from where anyone knew us]

Only yesterday at a meeting a Physical Therapist said, ‘If I become disabled I will use a cane, a walker, and a wheelchair, because I have seen how much help they can give you.’ It was easy for her to make that statement. She had empathy and understanding but she had not experienced reality… I know, I have been there and thought the same thing, after all I knew all about disability, I had had polio… BUT when my time came I sobbed my heart out when asking my GP for a wheelchair. [A polio survivor who has gardened successfully for over thirty years has gone outside to start digging over the vegetable patch ready for winter. The non polio partner watches him/her dig and rest, dig for less time and rest, dig for even less time and rest for longer. They don their ‘welly boots’ and out into the garden they go… ‘I have come to help you’… they are stunned to be told vociferously, ‘I have not needed any help for thirty years and I don’t need any help now.’ They go inside, deflated. Next day, unlike previous years, half the patch still needs digging, and out goes the gardening PPSer, who digs and rests and digs and rests and then storms inside and says… ‘I don’t suppose it would occur to you to come out and give me a hand’!!! – Anyone recognise this or a similar story?]

Caregivers to Polio Survivors—we need to learn how you feel about the things that are happening to us. Write to us with any hints, tips, suggestions, funny stories, that would help us all work together to improve the quality of all our lives. Let these two pages be your pages. Is there a Caregiver out there that would like to join our Operations Team and co-ordinate the information that comes in for these pages?

MORE PICTURES FROM OUR MEMBERS.

To Caregiver John Hartman,

We send you Our good wishes And Prayers For a Speedy Recovery The LincPIN

Above and Left See page 18

Above and Left see article starting on page 6. Anne’s wheelchair complete with bags. Below—Picture on card is Anne’s Garden

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 8 — March 2006

WebSite – http://www.lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

21st January 2006 Mary and Denise

Celebrate their Civil Partnership Ceremony

25th December 2005

Luke and Grandma Ellen Riddle

29th December 2005

Fiona and Grandma Marcia Falconer

February 14th 2006

Tony & Diane Meladio’s Wedding Day

at Montego Bay, Jamaica.

Robert Price, Lesley Forsyth, Yvonne Grosse, Ewan Peddie, Sylvia Fortune

Jim and Jenny Rayner, Judy Barter, Barry and Olivia Branston, Di Brennand,

Pauline and Robin Butler, Denise Carlyle, Sheila Dunnett, Margaret Edmonds,

Hilary Hallam, Pat Hollingworth, Mary Kinane, Mary McCreadie, Di Newman, Chris Salter

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – June 2006

Articles for publication 4th May by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Email List Facilitator – Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Dear Readers,

With best wishes. Mary Kinane, Chair. mary.kinane@lincolnshirepostpolio.org.uk

At least 80 extra patients would be treated with the initial £148,000 and another 23 for the second tranche of Blackburn funding.

Dinah makes some very valid points, including:

I would also suggest providing information about PPS for both the doctors and the

Lincolnshire Post Polio Network, Polio and Post Polio News. February 23, 2006 – Welsh drop commitment on disability.

Health Service Journal | Welsh drop commitment on disability. 23rd February 2006.

The original of the above article can be found at http://www.hsj.co.uk/nav?page=hsj.news.story&resource=4404983

http://mt.lincolnshirepostpolio.org.uk/archives/pandpp-news/001593.html

Cherish your arms, by Member Anne Wood

Accompanying photographs Page 24

over 2 years now.

I also have a powered cushion-lift www.mangar.co.uk/products/cushion which again raises me straight up and I can take this with me when traveling.

I have a washing “basket” on wheels to carry washing from the laundry bin to the

music on.

All these ideas help make my life a little easier, and I hope some of them will be helpful to you now or in the future.

I am sure others have many more ideas, share them with us, and know that at least one other member will be saying, ’Why didn’t I think of that?’

Anne Wood January 2006 Anne <poglet@BEEB.NET>

26th January 2006 we learned of the passing of Member Raymond M Owen.

Our condolences to his family and friends. His continued support for our organisation was greatly appreciated.

COMFORT HINTS—Air Cushion and Apron from Viola Pahl

Requirements:

1 Apron – Material for making the pockets – Pins

Wundaweb (or similar) – Iron and damp cloth

Dear Post-polios,

Hanbury Ward and the Ward Sister there was Anne Johnson (still a family friend). The physiotherapist was Wendy Hillier. He was there for nearly two years.

Finally, if anyone would be prepared to speak to me about what they remember about the first few days of onset of the disease and about the years of rehabilitation, I should be very grateful.

Please contact me, Sarah Passingham, by email: sarahpassingham@btinternet.com

Or write via our main address putting Sarah’s name on the bottom left hand corner of the envelope and we will pass the letter on to her.

Hypoventilation? Obstructive Sleep Apnea? Different Tests, Different Treatment.

Judith R Fisher, MSLS, Editor

Ventilator-Assisted Living. Fall 2005, Vol 19. No. 3

Reprinted from Ventilator-Assisted Living with permission of Post-Polio Health International (www.post-polio.org). Any further reproduction must have permission from copyright holder.

A result of <50% predicted FVC (Forced Vital Capacity) or a MIP (Maximum Inspiratory Pressure) <60cm H2O may signal that it’s time to get some assistance with breathing.

The pattern seen on an overnight oximetry tracing may also be helpful for identifying early hypoventilation often seen first during the deepest rapid-eye movement (REM) sleep stage.

Signs and symptoms of nocturnal hypoventilation may include one or more of the following:-

♦ Fatigue or exhaustion after normal activity;

♦ Excessive daytime sleepiness;

♦ Shortness of breath, breathlessness with minimal activity;

♦ Claustrophobia or feeling that air in room is somehow bad;

♦ Difficulty in speaking for more than a short time;

♦ Quiet speech with fewer words per breath;

♦ Inability to lie flat while awake due to shortness of breath;

♦ Inability to life flat during sleep/need sitting up (orthopnea);

♦ Trouble falling asleep and trouble staying asleep;

♦ Anxiety about going to sleep.

Other signs and symptoms, which may also be seen in OSA, (obstructive sleep apnoea) include:-

♦ Excessive daytime sleepiness and need to nap during the day;

♦ Nightmares, night sweats, bedwetting, or need to urinate frequently;

♦ Morning headaches;

♦ Restless/fragmented sleep with frequent awakenings;

♦ Shallow breathing or cessation of breathing for 10 seconds or more;

♦ Awakening from sleep with choking sensation;

♦ Worsening mental status, impaired memory, concentration, cognition.

Do not ignore these signs and symptoms hoping they will go away. They are serious. You may need evaluation and treatment immediately!

• FVC <50% of predicted.

• MIP <60cm H2O,

• PaCO2 arterial blood gas >45mm Hg.

• Nocturnal SpO2 (oxygen saturation)

• <88% for five continuous minutes while asleep.

Obstructive Sleep Apnea (OSA)

The standard treatment for OSA is continuous positive airway pressure (CPAP) to help keep the airway open or a bilevel unit without a backup rate.

http://www.orthoticmobility.com/steppers.html

It walks with you!

MSRP

Sure Step $59.95 Sure Foot $69.95

Sure Foot FA $109.95 (single) Sure Foot FA $189.95 (pair)

Hydrotherapy by Mary McCreadie.

Her attitude towards me changed dramatically when she actually saw my leg. I wonder whether she had secretly thought I was ‘making it all up’, and had been expecting a perfectly normal leg….

a) get the scooter ready and in the car the previous day.

b) drive 30 miles to the hospital.

c) off-load the scooter, and drive to the Physiotherapy department

d) get changed ready for the pool.

e) have the therapy.

f) get dressed again

g) drive back to the car and re-load the scooter

h) drive 30 miles back home.

If you have the chance to go for this treatment, I would still recommend that you take it if you feel you can. Who knows? You might well benefit.

Mary McCreadie

Good Luck. Hilary Hallam, F.I.S.T.1,F.I.S.T.{LS2}] 1 Fellow of the Institute of Swimming Teachers. 2 LifeSaving.

Back page pictures by Mary McCreadie.

TOILET CLEANING INSTRUCTIONS.

1. Put both lids of the toilet up and add 1/8th cut of pet shampoo to the water in the

bowl.

2. Pick up the cat and soothe him while you carry him towards the bathroom.

3. In one smooth movement, put the cat in the toilet and close both lids. You may

need to stand on the lid.

4. The cat will self agitate and make ample suds. Never mind the noises that come

from the toilet, the cat is actually enjoying this.

5. Flush the toilet three or four times. This provides a “power-wash” and “rinse”.

6. Have someone open the front door of your home. Be sure that there are NO

people between the bathroom and the front door.

7. Stand behind the toilet as far as you can, and quickly lift both lids.

8. The cat will rocket out of the toilet, streak through the bathroom, and run outside

where he will dry himself off.

9. Both the toilet bowl and the cat will be sparkling clean.

Yours Sincerely, THE DOG.

No Nursing Home for Me—Author Unknown

1. Gratuities which will only be $10 per day.

2. I will have as many as 10 meals a day if I can waddle to the restaurant, or I can

have room service! (which means breakfast in bed every day of the week).

3. Princess has as many as three swimming pools, a workout room, free washers

and dryers, and shows every night.

4. They have free toothpaste and razors, and free soap and shampoo.

5. They will even treat you like a customer, not a patient. An extra $5 worth of tips

will have the entire staff scrambling to help you.

6. I will get to meet new people every 7 or 14 days.

7. T.V. broken? Light bulb need changing? Need to have the mattress replaced? No

Problem! They will fix everything and apologize for your inconvenience.

8. Clean sheets and towels every day, and you don’t even have to ask for them.

9. If you fall in the nursing home and break a hip you are on Medicare; if you fall

and break a hip on the Princess ship they will upgrade you to a suite for the rest of

your life.

PS – And don’t forget, when you die, they just dump you over the side at no charge.

– o – o –

Members E-mail Forum by Mary McCreadie

So here’s a brief look at some of the questions that raised the most responses:

Q – What are your experiences of being out and about on a scooter/wheelchair? “…at first the electric wheelchair seemed very daunting to accept. NOW? I will not change it for anything.”

Q – Help! My daughter’s house has 24 stairs – in stages – to the bathroom, so I am in need of a Porte Jane. Please could someone give me a website?”

“I believe Tesco sells the Traveljohn – ring a few supermarkets to find out. Alternatively, your chemist might even have one or other of the above, in these more enlightened times.”

“How about a commode that you take with you?”

This was just a small selection of the questions and replies and it’s great to see our e-mail forum fairly buzzing!

We are looking forward to many more of our members joining in the discussions, so please – if you would like to join the list and are a paid-up member of the LincsPPN, send an e-mail to

join-pnl@lincolnshirepostpolio.org.uk

(please include your full name in the email).

Mary McCreadie, List Facilitator. mary.mccreadie@lincolnshirepostpolio.org.uk

A Caregivers Bill of Rights – Author Unknown

I have the right….

1. To take care of myself. This is not an act of selfishness. It will give me the

capability of taking better care of my loved one.

2. To seek help from others even though my relative may object. I recognize the

limits of my own endurance and strength.

3. To maintain facets of my own life that do not include the person I care for, just

as I would if he or she were healthy. I know that I do everything that I reasonably

can for this person and I have the right to do some things just for myself.

4. To get angry, be depressed and express other difficult feelings occasionally.

5. To reject any attempts by my loved one {either conscious or unconscious} to

manipulate me through guilt and/or depression.

6. To receive consideration, affection, forgiveness and acceptance for what I do

from my loved one for as long as I offer these qualities in return.

7. To take pride in what I am accomplishing and to applaud the courage it has

sometimes taken to meet the needs of my loved one.

8. To protect my individuality and my right to make a life for myself that will sustain

me in the time when my loved one no longer needs my full-time help.

9. To expect and demand that as new strides are made in finding resources to aid

physically and mentally impaired persons in our country, similar strides will be

made towards aiding and supporting caregivers . 10.To be myself.

Caregivers Tips.

1. Be good to yourself. Love, honour and value yourself. You are doing a very hard

job and deserve some quality of time just for you.

2. When people offer to help, accept the offer and suggest specific things that they

can do to help.

3. Seek support from other caregivers. There is great strength in knowing that you

are not alone.

THREE TIPS TO HELP IDENTIFY IF SOMEONE HAS HAD A STROKE

1. *Ask the individual to SMILE.

2. *Ask him or her to RAISE BOTH ARMS.

A Message to our Caregivers… by Hilary Hallam

MORE PICTURES FROM OUR MEMBERS.

To Caregiver John Hartman,

We send you Our good wishes And Prayers For a Speedy Recovery The LincPIN

Above and Left See page 18

Above and Left see article starting on page 6. Anne’s wheelchair complete with bags. Below—Picture on card is Anne’s Garden

Linc Pin Volume 5 Issue 8 Read More »

Linc Pin Volume 5 Issue 7

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 7 — December 2005

WebSite – http://www.lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

We would like to thank the Hawaii Post Polio Network

for permission to use the above cartoon from their November/December 2005 Newsletter

with slightly adapted wording. Contact for this group is Jane Marcum <marcuml001@hawaii.rr.com>

“What am I doing ! ! ! ? ” “I am exercising……

and intend to be tough and leathery by the 24th of December”

CONTENTS.

Page 2 Pages 3 to 5 Pages 6 to 9	Contents, Donations received and Contact Information.Message from the Chair.Compensatory and Recruited Muscle Use by Polio Survivors allows us to ‘cheat’ to achieve actions, but is ‘cheating us’ when we are being assessed. By Hilary Hallam.Report from Life Member Jann & John Hartman following their presentation “Better Eating for Better Health with Family and Friends” At the PHI Conference in St. Louis, MO June 2005.Louise L Hay workshop/holiday“Love Yourself, Heal Your Life” by Member Anne WoodPensions in the U.K. By Phone Team Member, Margaret Edmonds.
Pages 10, 11
Pages 12 –14
Page 15
Page 16	Welcome to Mary McC—our new Facilitator—a cornucopia of information on a variety of subjects.Schematic of Breathing Tests, [Article on pages 6 to 9 refers]WE WOULD LIKE TO THANK THE FOLLOWING FOR DONATIONS RECEIVED TOWARDS OUR WORK.
Page 24

Agnes Walker, Victor Gabriel, Barbara Bradley, Joy Witheridge, Winnifred Hyam, Anne Williams, Heather Chadwick, Jean Simm, Simon Parritt, Brenda Fleet, Vic Oliver, MR Reece, L Hobday, Barry Branston, I Meade, Mrs John Bowles, Yvonne Webb, Margaret Edmonds, Y Liggins, AT Telford, L Reeves- Hall, Robert Price, Ewan Peddie, Jim & Jenny Rayner, Sylvia Fortune, Sheila Dunnett,

Robin & Pauline Butler, Barry & Olivia Branston, Hilary Hallam, Mary Kinane, Denise Carlyle, Chris Salter, Di Newman, Di Brennand, Pat Hollingworth, Margaret Edmonds, Judy Barter and Mary McCreadie.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – March 2006

Articles for publication 14th February by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Email List Facilitator – Mary McCreadie – mary.mccreadie@lincolnshirepostpolio.org.uk Internet Services Administration – Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Hello Readers, It has been a busy three months since we last went to print. In that time, we have had our Annual General Meeting in Lincoln and the feedback from those attending suggests that our choice of speakers was timely. In particular Dr. Darren Barnes-Heath, BSc, DC, CCEP (a doctor of Chiropractic specialising in neurological conditions) of Newland Chiropractic Clinic in Lincoln gave a fascinating talk and demonstration on how Chiropractic can help those with pps. He has done four years Post Graduate work in neurological conditions with the Carrick Institute and at present is one of seven qualified in the UK. It wasn’t the first time I had volunteered to be a ‘guinea-pig’ for demonstration purposes, and offered myself (but in particular my knees, elbows and eyes!) for a number of reflex and response tests, a study in balance, and a fascinating test on how the left and right sides of the brain work. I hasted to add that none of the tests were invasive in any way and were completely painless. Dr. Barnes-Heath’s treatment methods have already helped some PPSers in the Lincoln area to improve function, and I think he had a few more would-be-patients by the end of his talk. We liked the fact that he turned what can be difficult material into a very accessible presentation, and I am glad to quote member and newsletter distributor Barry Branson who said ‘”That was the best talk I have ever attended.” Dr. Barnes-Heath is writing an article for our newsletter but has had to delay this to our next issue as time has run out on him following the birth of his first son, Edward. Congratulations and thanks to his wife for holding off till after the AGM.

Also on that day, we had a talk from Mark Rainey, Carers Service Co-ordinator from the Social Services Directorate of Lincoln County Council—with useful information on developments within Social Services, and how they are set up to respond to Carers needs. Carers in Lincolnshire can now ring his department and ask for an assessment over the phone or at a meeting to ensure that they are in receipt of benefits and help available. It was generally agreed (by those attending) that many carers, especially those who are also disabled/getting older/living with long-term conditions themselves would need to be quite persistent and determined in order to get a prompt response from existing services. We think that in the end, we gave Mr. Rainey a few things to think about from the point of view of aging ppser’s. Contact your local Social Services to see if this or a similar service is available and ask for the leaflets. Both speakers were thanked for coming along and giving so freely of their time.

We are disappointed to report that we are not able to help those under 60 with polio and pps to access extra heating allowances.

Here is the reply on the subject from Minister Stephen Timms to Gillian Merron, MP for Lincoln.

POS(3)10865/160 – Dear Gillian,

Mrs. Hallam has written in support of EDM276 which suggest that the Winter

Fuel Payment scheme should be extended to disabled people aged under 60. I have studied carefully the arguments put forward by Mrs. Hallam and others, but remain unconvinced that we should extend Winter Fuel Payments to this group of people.

We introduced Winter Fuel Payments in 1997 to give pensioners reassurance that they could afford to heat their homes in winter. It is paid in a lump sum each winter to ensure that money is available when fuel bills arrive. Older people are targeted because they are more vulnerable to the effects of cold weather during the winter months than other groups.

Not all disabled people suffer from a condition that is directly affected by fluctuating temperatures; for example, people with learning difficulties, or who are profoundly deaf. I do appreciate that disabled people can face extra costs. For example, they may need to spend more on food and transport. Some certainly do need extra heating. By and large, these needs arise all year round and not just during the winter months.

This is why benefits such as Disability Living Allowance and the disability premiums in the income-related benefits were introduced. They provide additional weekly payments and are related to the individuals circumstances. The most severely disabled people receive an additional amount of over £7,000 per year in recognition of their extra needs costs.

I believe that by targeting help to disabled and elderly people in these differing ways we are better able to meet their individual needs.

I would like to assure Mrs. Hallam that we remain committed to tackling fuel poverty. Fuel poverty is caused by a combination of factors, the most common of which include energy inefficient housing, under-occupancy and fuel prices, as well as low incomes. The UK Fuel Poverty Strategy, published in November 2001, set out a comprehensive package of initiatives to ensure that by 2010 no vulnerable household in England should be living in fuel poverty. Warm Front, the Government’s main programme for tackling fuel poverty in the private sector in England, has assisted over one million households since its launch in June 2000. The Scheme provides grants for insulation and heating improvements to households in receipt of qualifying benefits. Recent improvements to the Warm Front Scheme mean that all eligible householders will be able to receive full central heating as part of a comprehensive package of measures designed to take, and keep, households out of fuel poverty. There are also comparable Schemes in each of the devolved nations.

To find out more about the Warm Front Scheme, householders should call

0800 316 2028

Yours ever,

Stephen Timms MP

Minister of State for Pensions Reform

Department of Work and Pensions

Richmond House, 79 Whitehall, London, SW1A 2NS 020 7238 0800

Email – ministers@dwp.gsi.gov.uk www.dwp.gov.uk

About the Warm Front Scheme http://www.defra.gov.uk/environment/energy/hees/01.htm and the Grant form and eligibility!!!!!!!!! http://www.eaga.co.uk/Grants/warm_front.htm

We will continue to support the pressure on government to make Winter Fuel Payments payable to those under 60 years of age, with long-term conditions. However, if you are aged over 60 and living in the UK, contact the government Winter Fuel Payments Helpline on 08459 15 15 15. If you are a member of the British Polio Fellowship, are living on a low income and in the UK, you may apply for the Fellowship winter heating grant by phoning 0800 0180 586.

Stop press in the Sunday Express, Dec 4th by Julie Hartley Brewer, Political Editor, ‘The Chancellor is planning to slash winter fuel payments, end free TV licence for the over-75’s and scrap the pensions link to earnings, when he is Prime Minister, to save cash. This is the astonishing claim made by Ros Altman, a highly respected independent pensions policy expert who has advised both the Treasury and Number 10 since 1999.’ Will be looking into this.

With Mary McCreadie’s thoughtful input, (see pages 16 to 22 in this newsletter) as well as Chris Salter’s unstinting web support, it is good to see the LincsPPN Members email list so busy at the moment—that’s our forum for those who use email to discuss matters online. If you have recently changed your email address, or wish to be subscribed to this list please email mary.mccreadie@lincolnshirepostpolio.org.uk who will check your membership status and get your subscribed so that you too can join in the discussions.

I would also like to thank member Graham Kay who recently wrote to me with fund raising suggestions.

Wishing all our members

A Happy Holiday and Happy New Year. Mary Kinane, Chair mary.kinane@lincolnshirepostpolio.org.uk

Please take special note of the Membership Announcement at bottom of page 22.

Compensatory and Recruited Muscle Use by Polio Survivors allows us to ‘cheat’ to achieve actions,

but is ‘cheating us’ when we are being assessed. By Hilary Hallam, December 2005.

A further problem regarding the assessment of Polio Survivors has just come to light. We have already highlighted the fact that Manual Muscle Testing when done to a lesser time/ number of repeats lower than that of the reported start of weakness will not corroborate what is being reported. That it is essential to self assess and give more accurate information. It is the change between how you used to do each action in your daily life and how you do it now that is important information to pass on.

Every time my arms were tested after the fall in 1988 and the start of my new symptoms the following took place.

Reported Symptom	‘My arms are getting weaker, I cannot swim as fast’
First test	Grip strength.
Action	Sustained strong grip for four seconds.
Result Arms – Lift Item and Sustain	Recorded, muscle strength level 5, normal.Chart to the left shows at two second intervals my ability to sustain the grip and weight of a saucepan of

potatoes for 4 and water. Test above lasted for 4 seconds and did not pick up the decline seen here at six, eight and ten seconds.

Self assessment allows me to change the Reported

symptom information to:-

‘I can no longer sustain the grip and weight that I

used to. For example, 5 years ago I could lift a saucepan of potatoes for 4 and water, take it to the sink and drain it with no problem. Now I can lift it from the hob to the work-surface – next to one another – but then have to slide it along and take the potatoes out with a slotted spoon.’

To counter any response that a Doctor would realise this, I passed a very stringent medical in 1969 for the Police Force. When I arrived at Training School and saw the Timetable I had to speak to my Sergeant and ask that I be excused from cross country running. Can you imagine their surprise when I told them the reason being that I had never been able to run following my polio at age 5. I could also not rise from a squatting position without using both hands. It was only after receiving the medical report from a Neurologist for the Defence of a Court case in 1998—on neurological examination of the legs power at the left leg, hip knee and ankle are normal’ [my left leg is my weakest and has never been normal since polio] that this fact came to mind and made me realise that the validity and reliability of single action Manual Muscle Testing has to be faulty. No doctor or health professional would record figures that he did not believe to be true.

The new issue we are raising relates to testing us for reported respiratory symptoms. About five years ago I was approached by a member who had just come back from Papworth Hospital and been told that the figures were fine nothing wrong with her. She replied, ‘but when they tested my breathing ability in a variety of tests they could not do the three repeats wanted at their normal resting times as I did not have the oomph to comply. It took two hours to do fifteen minutes worth of tests.’ I recommended that through her GP she contact the hospital with this further information and believed it had been taken on board.

6 5 4 3 2 1 0

Left Arm

Right Arm

Ten years and one week after finding PPS existed and bringing the fact that I had had polio as a child into the equation found me at Papworth Hospital for a similar assessment for answers to a list of symptoms. With all the work I have done during this time I was well prepared with a copy of my mid 2004 base line assessment and three pages of typed notes for this visit. Contact details, allergies, intolerances, medicines taken, symptoms, and problems with daily living. To read this as a stand alone document I will set the scene. In May 1952 at just over five years of age I caught polio when I was in Libya and was initially paralysed waist down with good recovery leaving me with some leg weakness. In 1958 and 1959 I had tendon transplants in both feet and was able to do more physically. Over the next fifteen years I attempted nearly every sport I could that did not involve running or rising from a squatting position. I did judo, lifesaving, swam for my county, ballroom dancing, rock climbing albeit using strong arms due to leg weakness, canoeing, and at Police Training School completed the 49 mile Lyke Wake Walk across the North York Moors in 18 hours. Polio was part of my past.

My physical abilities prior to a fall in October 1988

♦ I was working 60+ hours over four jobs, Advanced Swimming Teacher, Senior

Lifeguard and Training Officer, paperwork & parts delivery for our garage business.

♦ Plus an average of 10 hours voluntary work a week and during the summer this was as

a Lifeguard at the Chapel St. Leonards Lifeguard Station on the East Coast of England.

♦ My two children were teenagers and I did all the housework, gardening and decorating.

After the Fall on October 10th 1988, where my foot merely slid on a small wet patch on

the handicapped school corridor where I taught swimming in the hydrotherapy pool, I

started to have new symptoms and a loss of physical ability. I spent three weeks in neck

traction, diligently did all the recommended physiotherapy but the more I did the worse I

seemed to get. I could now no longer swim as fast, or pull myself out of the deep end of the

swimming pool, or pass even the basic lifeguard award and I lost most of my jobs which

was devastating. The testing did not corroborate the weakness I was reporting.

Seven years followed of medically noted yet ‘disbelieved’ unexplained symptoms with almost no corroboration of what I was reporting. This was despite a continuing and considerable deterioration in my physical ability. I repeatedly had to face that facial expression of ‘you are a malingerer, you are not trying hard enough, there is nothing wrong with you’. What was wrong with me, was I mad, MS and Alzheimer’s?

On November 22nd 1995, Seven years after the fall and six months after having to give up work through continued deterioration I attended a medical appointment to hear the results of my MRI and at last find out what was wrong with me. I was stunned to be told, ‘Glad to see you are better’. I said ‘I had polio as a child could that have anything to do with this? The doctor then said, ‘Oh there is something called the Late Effects of Polio, I don’t know much about it, but I had another patient like you and sent him to a Neurologist.’ After seven years of brick walls that there was nothing wrong with me I now had a possible name for my condition. My polio was now back in the equation. Now I would get the help that I needed to manage my life, but No…..

Two more years of brick walls. November 1995 to February 1997 and all test results are normal through one hospital. No diagnosis. March 1997 to December 1997 starting all over again at a different hospital system and after a full days tests, nothing else found so we can confidentially diagnose the post polio syndrome. The end to the brick walls? NO.

Most test results did not corroborate what I was saying, just a couple of other examples.

♦ 4 years of medically recorded symptoms of visual problems and testing at two hospitals

with nothing significant found, ? Optic neuritis. [Research on Polio lists elicited that it

was likely to be weakness of muscles that move the eyes and accommodation.

Confirmed by my optician after reading a report from an Australian Optician,]

♦ Three months attending the ENT department for voice deepening and hoarseness and

swallowing problems. Nothing found, you have nothing wrong with you.

In 2004 I was lucky enough to find a new Rehabilitation Consultant Dr. Prasad—out of the area where I lived – who had made a full A4 page of notes on my file, who listened to what I

had to say and agreed that with no base line assessment on my records it was difficult to show progression either way of my condition. He referred me for a variety of tests – giving me the waiting times – including to a Physiotherapist for a full assessment. [nine months wait for this appointment]. BUT joy of joys, Senior Physiotherapist Gill Weir was interested in PPS, she listened, she discussed, she observed how I achieved actions, she gave up hours of her own time and worked with me on ‘Assessment forms’ and by the end of 2004 I had my base line assessment, not only corroborating what I had been saying but finding other new weaknesses. At last now I had this there would be no more brick walls, or ? In September 2005 I had my yearly appointment with Dr. Prasad and again expressed concern about the fact that some of my symptoms remain unaddressed, e.g. my voice continuing to deepen; getting hoarse after speaking for some time; Richard telling me that I snored very loudly and that I stopped breathing for short times; that I had had swallowing difficulties for over 10 years now; that I choked every time I burst out laughing, I was referred to Dr. Shneerson head of the Respiratory and Sleep Centre at Papworth Hospital. And I was lucky enough to receive an appointment for the end of November.

I was admitted on Monday 30th November 2005 -10 years and one week on from the first time my polio was taken into the equation when assessing me – and now I would find out what was causing all those symptoms and expected that I might have to start using a night time ventilator. I was nervous.

The last thing I expected was another brick wall and I could not believe it was made of the same bricks. The figures from the test results did not corroborate what I was saying. [See the charts on the back page] I did take information with me – my base line assessment and 3 pages of typed notes to be put on my file. Half a page was symptoms relating to the testing that was going to take place. The admitting nurse read this, the admitting doctor skimmed it and passed it back. I tried to discuss the fact that I believed that the way we breathe has something to do with our weakness but got no response. The night time tests took place but the system is such that at 7 a.m. Dr. Shneerson looks at these faxed figures and decides who can go home that day telling the ward staff how many beds are free for new patients. Further tests are to take place that day but you are told you are going to be discharged and you do not get to see the Consultant till after those tests and just as new patients are arriving at 2pm.

I had an x-ray and then went off to the Respiratory Laboratory, [where I was told that they did not see many people with pps, remembering only 2 in the past three months], and met with Roy who was happy to answer questions and discuss any issues. [Roy has also agreed to answer general, not personal, breathing test questions]. As the first test was to repeat three times and take my time between repeats I said ’You are going to record the time taken between tests?’ and when told ‘NO,’ was horrified that this was still happening. Surely not another Brick Wall, test result figures might not show my problems.

To explain. You are asked to take a deep breath, a peg is put on your nose and you are asked to breathe out for as long as you can. Then rest, and then normal resting time of 30 seconds, repeat, rest and repeat again. However, Polio Survivors [and how many others?] are told take your time between tests. So instead of 30 seconds it was 2 minutes and then 4 minutes. Three results almost the same. The next test was the same and so on. Thankfully my tester, ‘my bricklayer’ was interested. As the testing continued we found that I was recruiting more and more muscles to achieve actions. When trying to hold my breath for ten seconds I ended up pushing hard against the floor with both feet. When asked to lie flat for the last test, twice I raised my head to achieve the action, to be told, ‘No, keep your

head flat,’ and this time requested testing at normal resting times. This showed deterioration on repeat 3 and 4 but we talked for longer between the fourth and fifth repeat and the result started to go back up. Which in itself was very useful as Roy explained it showed that resting for an extra minute showed a higher result and start of recovery from muscle fatigue. When the tests were finished he said that he had added notes on my file and would be taking up what had happened at a staff meeting on Monday. The brick wall that had appeared was now much lower. I was physically exhausted. My ribs ached badly, I was only able to move a little amount of air in and out. I returned to the ward to meet Dr. Shneerson, hear my fate, and be on the road by 1.45 p.m. to get home in daylight.

I did not expect and was surprised to hear that my sleep tests were fine, my oxygen and CO2 levels were within limits [no sleep apnoea] I was asked when did I have polio, what area of my body was paralysed, was I in an iron lung. I replied ‘waist down paralysis and no iron lung’. Then the results of my breathing tests, ‘these figures are fine,’ and the Brick Wall suddenly gains bricks fast. I pointed to the first few words of notes in very small type showing that I fatigued easily to be told ‘it was nothing to worry about. I don’t need to see you again.’ I made a big mistake here. I left, I should have insisted that I have more time to discuss this with him and ‘my bricklayer’ and asked to stay another night. But I was devastated. How should we approach a Doctor when we believe he is wrong?

In desperation I rang Chiropractor, Dr. Darren Barnes-Heath – who spoke at our AGM – and told him what had happened and asked for his help. I showed him the three pages of information that I prepared and taken with me. Here are just a couple of phrases from a comprehensive report that has now been sent to Papworth. ‘Hilary’s muscles fatigue very rapidly and so repetitive muscular activity like breathing is constantly at a low level of functionality.’ and ‘I suspect her palate muscles are fatiguing during her sleep because her medullar output is low and this is causing her reported sleep apnoea.’

Once again we are able to show that the validity and reliability of this method of testing Polio Survivors [and others with similar neuromuscular problems?] must be faulty. I have not listed at least 45 other brick walls since my fall in 88. So many unproductive appointments with testing not corroborating symptoms. Such a waste of NHS money, time and energy and making me worse than I need to be through stress, frustration, incorrect advice, lack of necessary equipment, treatment, etc.

We will now be revising and updating our Information Pack over the next couple of months. Donations towards the cost of printing and posting would be very welcome. Remember the ball is in your court. You must self assess, you must listen to what your body is telling you. Ask family members and friends to go through your daily activities and help you record the changes. Take that information with you and ask which muscles are you using and ensure that you are tested to the level of your reported decline and that your use of compensatory and/or recruited muscles is taken on board. If you need our help, contact us.

Evidence of issues is critical to our discussions with health professionals to get changes made to the system. Please write and tell us about any similar problems you have had. Remember all the work we do is voluntary, your committee and operations team are giving up time and energy from their limited PPS resources. If you can manage to spare an hour or two then get in touch and see if there is a task that you can help with. Comments from anyone reading this, good or bad, as with all our work is welcome if we are to improve on the services we provide.

Hilary Hallam, Founder, Secretary and Newsletter Editor, Lincolnshire Post Polio Network—www.lincolnshirepostpolio.org.uk hilary.hallam@lincolnshirepostpolio.org.uk

Permission to reproduce in full is granted by the author with a request to let us know so we can update you on what happens next.

Report from Life Member Jann & John Hartman following their presentation “Better Eating for Better Health with Family and Friends”

At the PHI Conference in St. Louis, MO June 2005.

John and I had a great time at the Post Polio Conference in St. Louis this past June. First, we always enjoy seeing old friends, like Richard and Hilary as well as making new friends. It was really great getting to know your Mary Kinane and Denise Carlyle. I really enjoyed the many speakers and all the information they so generously shared with us. Denise, Mary, and Hilary had a wonderful presentation that we all enjoyed very much. I also wanted to add that St. Louis has an accessible metro system that we used to get into the hotel from our travel trailer parked over at the casino across the Mississippi River. John and Richard also used the metro for a trip around St. Louis. We hope to get back there again someday and explore more of the St. Louis area on my scooter.

Our topic for the conference was “Better Eating For Better Health With Family and Friends.” Along with up-to-date nutrition information, we wanted to share how we are able to eat well and share the shopping, cooking, and more. We polio survivors are finding out that we must share the chores with others, and that includes cooking. Even if your significant other hasn’t done a lot of cooking in the past, it’s never too late to learn.

My suggestion is to find a child’s cookbook, like the “Junior Cookbook” from Better Homes and Gardens, as they usually have simple to make recipes as well as pictures and other good basic information. Most men enjoy cooking on the grill so that may be a good place to start. It’s really helpful to find something they enjoy like chili or perhaps a hearty soup.

John tends to cook large portions, so he’ll make a really big pot of his spaghetti sauce. We learned to freeze portions to use as needed. It turns out that his quantity cooking was a blessing in disguise. Now, we have a variety of containers to freeze soups and other foods.

It is no surprise that a full 2/3 of polio survivors say they have a weight problem (according to an internet survey). And overweight, inactivity, and age can result in a greater risk of type 2 diabetes. While losing weight is not that easy for most of us, it is something than can be done if it is a priority and we give it enough time. Sorry to say there are no quick diets or easy fixes. It takes a lifestyle change.

We have also found that it is possible to lose weight, even if we can’t do much, if any, meaningful exercising. I have lost a little over 20 lbs. in the past two years. But, John, who is able bodied, lost more weight than I did without really trying. Being active does have its advantages. But, any loss is a step in the right direction.

One of the biggest changes we have made is eating smaller portions of food. Many of the portions served in restaurants today are way too large. That’s why we not only consider carefully what foods we order out, we often share an entrée. Or, if the servings are huge, we will bring home half of it for another easy to heat up meal. And, we stay away from buffets as it has been proven that you will most often overeat when offered such a bounty of foods.

We choose tofu for participants to try, since many people haven’t tasted it or they have tried it and didn’t like it. Tofu is easy to use in cooking and it adds protein to recipes. We served tofu cut into tuna salad (it can be used in place of hard-cooked eggs) and served it on 100% whole wheat crackers. Tofu is really tasty in the right recipe, like Tofu Pumpkin Pie (below).

We also had some plastic bags for the trail mix we had bought in bulk to share. It is always good to have a healthy snack available. And, I believe a nice little extra is adding minichocolate chips to snacks. In small portions, they can be a tasty addition to your dietary plan. I usually have some nuts, and a piece of fruit, like an apple with me.

Another easy to use soy product is textured soy protein (tsp) which are dry soy granules. It is often sold as Textured Vegetable Protein (TVP). It needs to be reconstituted with an equal amount of water, or vegetable juice, like V-8. It can be used instead of hamburger in recipes like chili or spaghetti sauce. We also use it half and half to stretch the minced meats in things like barbeque beef for sandwiches.

We also sampled some of the new soy cheeses. Their taste and texture is much better than they used to be. Most everyone thought they could use the cheese slices in things like sandwiches. The idea is to try new foods, and to keep an open mind. You just might find that you enjoy newer, healthier foods. Foods in as close to their natural state as possible are often best. And, you just can’t get away from reading labels.

No matter what the latest headline about nutrition says: we still need a good source of lean protein, plenty of fruits and vegetables, a good source of calcium (usually dairy), and 100% whole grains in the proper amounts every day.

No matter where you get your nutrition information, be sure to consider the source. I look for a nutritionist (Registered RD or Licenced LD Dietician) who works with people who have a chronic condition. This is a good person to see, especially if you have access to them through your health services. Or, invite them to your support group meeting. They often bring healthy snacks along with nutrition information and recipes.

Recommended resources:

“The TVP Cookbook: Using the Quick Cooking Meat Substitute” by Dorothy Bates “Jane Brody’s Nutrition Book” by J. Brody (basic nutrition information)

“Power Nutrition for Your Chronic Illness” by Kristine Napier, MPH, RD

More of my book recommendations on my website: http://www.geocities.com/Heartland/Ranch/5212/bookstore.html

Jann and John Hartman, “on the road” headed for Florida – <arojann@YAHOO.COM>

Tofu Pumpkin Pie

Put all of the ingredients in a blender or food processor:

1 and 1/2 cups canned pumpkin [405gms*] 8 ounces tofu (silky)

2/3 of a cup of sugar (can be part brown sugar) [135gms*] 2 teaspoons pumpkin pie spice

1 teaspoon vanilla extract

Pour into an unbaked pie crust. Bake at 425 degrees for 15 minutes. Then, bake at 350 degrees for 45 minutes. Chill thoroughly before serving.

Translating US measures to UK measures is not as easy as I thought. Check out the following websites for information—[*hope measures in brackets are right] http://www.miketodd.net/encyc/cooking.htm http://www.nal.usda.gov/fnic/foodcomp/search/

Louise L Hay workshop/holiday “Love Yourself, Heal Your Life” by Member Anne Wood.

14th May. I’m relaxing in my power chair in the shade under a clear, azure sky beside a sparkling blue swimming pool, an iced orange juice in my hand. The air is filled with the sweet scent of honeysuckle, roses and other glorious blooms, the house martins are swooping and diving to catch flying insects for their hungry broods. I’m feeling calm and peaceful.

Carrie Harris www.transabler.co.uk counsellor at the MS Treatment Centre, Southwick, West Sussex BN42 4AB, www.mssussex.com which offers High Dosage Oxygen Treatment (HDOT) and a range of therapies to sufferers of MS and other neurological conditions, is sitting beside me. “I bet if I’d told you when you first came to see me that in 4 months’ time you would be relaxing on a Greek island, you would have thought me crazy.” Yes. Absolutely.

Yet there I was on the Isle of Lesvos, with my daughter Becky as my helper, Carrie and a bunch of other lovely people, all with the same aim – taking part in a “Love Yourself, Heal Your Life” workshop based on the work of Louise L Hay, a metaphysical self-help author http://www.louisehay.com Carrie has a variety of methods to help people overcome their problems and live more happily, and this particular workshop/holiday sounded amazing. I had gone to see her in January this year in great distress as my husband had left me one week before Christmas 2004 after 38 years of marriage. I was distraught – my whole world had collapsed and it was quite impossible to believe I would ever climb out of the black pit of grief and despair I was in. I had been dumped at the age of 60 with a progressive, debilitating disease, I felt unloved and unwanted by the one person I had loved all those years, and I had no future to look forward to.

A few weeks into my sessions with Carrie she mentioned that she was arranging this course, and suggested I give it some thought. But it was a crazy idea – I had a fear of flying and hadn’t been near a plane for 21 years, hadn’t been abroad for at least 10 years when I didn’t even need a stick to help me walk, and anyway I always had my husband to help me. I have to use an electric wheelchair when out, can’t climb stairs and can’t get up from seats and beds without electric equipment. In my fragile emotional state it was much too big to contemplate. I couldn’t do it. However, Becky saw Carrie’s flyer and immediately volunteered to give up a week’s earnings and be my support and mainstay, despite not fully recovered from 10 years of CFS/ME. She talked me into it… Then began the long process of first of all checking that the hotel was wheelchair-friendly, and whether there was some way of transporting my power chair between the airport and hotel, an hour’s drive. The latter took a good 3 weeks for the hotel to arrange. Would the airline accept the chair batteries which had to be sealed ones otherwise they would explode in mid-air? Would they let me take my essential chair charger, the battery-operated cushion lift www.mangar.co.uk/products/cushion (also mains-operated), large toilet seat extension, and two crutches into the cabin with me? Carrie made umpteen lengthy phone calls to the travel company, airport and airline who asked so many questions regarding the descriptions and dimensions of everything, that eventually I said it would be easier if I dealt with it all myself. I didn’t anticipate it being as

stressful as I found it during the next few weeks, with all the information I had to gather or give, and because at quite a late stage I realised I hadn’t sorted out travel insurance and the long-stay car parking at London Gatwick Airport. I decided to take my manual chair as well as I didn’t know the terrain on Lesvos, and in case the electric one was damaged en route. I got in quite a state arranging and doublechecking everything, feeling panicky and frequently wishing I had never agreed to go.

On The Day we left our homes at 7am. I had to take my own car to the airport so that my chair could be hoisted in, but with two wheelchairs and room for just two people it became clear that our luggage and equipment had to go in another car. Thankfully Becky’s fiancé, Dan, did the honours there. I booked the parking company for the “Meet and Greet” service (approx £90), and they met my car, helped us unload everything then took the car and parked it. Dan stayed with us up to the gate, constantly reassuring me that everything was fine, then Becky took over jollying me along.

My big toilet seat had to be accessible at all times for a “sit-down job”, and I had searched the internet for a female urinal that I could discreetly tuck into my bag, and found several suitable ones, www.whizaway.com , www.woodstockit.com/ products/Uribag courtesy of the NHS, and I bought a third kind myself, www.traveljohn.co.uk . I packed one of each. The cushion lift was essential on the plane as the seats were very low, and on the hotel bed as it was impossible for me to get up unaided.

For my own sanity I had double-checked every arrangement, leaving nothing to chance, making sure that all the organizations involved knew of my disability, that I was taking two wheelchairs, essential cabin equipment – all of which was carried free and I could still take the maximum hand luggage – that I would need assistance getting on to the aircraft, and that I was scared. In the event, I was allowed to keep my power chair right to the cabin door, having been hoisted in it on to a large hydraulic lorry and driven 1½ miles to the plane.

Once we had taken off I was able to relax for a few hours, and was so pleased that all the rigorous planning had worked out well. The week before we left I had a final session with Carrie to help get over my nerves about the flight, and I also took a Valium tablet. She met us at the airport in Mytilene and helped Becky who was struggling with the luggage and my equipment, then guided us outside to where a taxi and my wheelchair transport were waiting. This was a rather beaten up little truck driven by a very jolly Greek gent who assured me, as he and the taxi driver hauled my 1½ cwt power chair on to the back, along with the manual, that the flimsy bits of rope were more than adequate, and not to worry. The hour’s stunning drive to the hotel was up and down steep and winding roads, through the olive groves, and I was thrilled to bits.

The newly built Aegean Sun Hotel, www.aegeansun.gr 1.5km from Plomari, and minutes from the sea was very accessible and our room was right by reception. The wet room was great and I could shower in safety. The staff were very helpful and most spoke English. They must have chuckled when I emailed them to ask if

there were cutaway kerbs for my wheelchair…… they were just “plain car roads” as they put it…..yes, and rugged, fast and winding, not ideal for a wheelchair, but we made it into Plomari twice, 30 mins each way. The picturesque, seaside town is built on a hillside with rough, steep steps everywhere, tumbledown houses, cobbled roads, etc, and we didn’t see anyone else in a wheelchair. I guess any disabled locals either stayed in or were carried around.

We arrived on a Thursday, and the workshop weekend began with dinner on Friday evening and getting to know each other. We were a party of ten: Carrie’s colleague, complementary therapist Heather Drummond, two had come just for the holiday, so there were six of us for Carrie and Heather to work with. We weren’t expected to explain our particular reasons for going, we just had to be willing to take part in as much as we felt comfortable with. We did meditations, drew and talked about healing body parts which hurt, gave and received massage for a few minutes, we sang affirmations, thought about negatives and positives learned from our parents, discussed forgiving others, learned about loving ourselves, how to change our ways of thinking, etc. It was pretty emotional at times, and sometimes quite hard work. At the end, Carrie asked us to write a few words of encouragement on heart-shaped post-it notes to give to everyone, and I was touched and flattered by the many compliments given to me.

The next few days we were free to do as we wished, and Carrie and Heather made themselves available to anyone who wanted to talk privately or have some complimentary therapy from Heather, such as a massage or ear candling. One day the others went on a coach and boat trip to Turkey, so I just relaxed in the shade and read the course book “You Can Heal Your Life”, by Louise L Hay.

One evening we all trouped down to a local beach restaurant and had an uproarious time – I couldn’t remember when I had laughed so much……what a tonic that was. For the first time Carrie saw another side to me, and I rediscovered the joy of making others laugh…..a wonderful feeling.

All too soon it was time to leave, reluctantly in my case as I had felt so good on the island and I was going back to bleak despair. It was sad saying goodbye to everyone but I had so many happy memories that I knew would stay with me. The trip home took a nightmarish 11½ hours due to a stop-over on the Greek mainland and complete disembarkation. Becky and I arrived at the equivalent of 1.30am, it was pouring with rain, very cold and we were exhausted.

After I picked up from the expected slump into depression, I definitely felt the benefit of the workshop/holiday. It was a turning point, without doubt. Thanks to Carrie, Heather, Becky and the others I met, I proved to myself that I did have the courage to leap into the unknown, overcoming fears and breaking the chains I thought were there, that I am loveable and that I can be happy again. My confidence has grown and I aim to see more of the world now. I am indebted to Carrie for helping me this far, and to Becky for her constant support during the worst period of my life. Now I must practise my affirmations and learn to love myself.

PENSIONS IN THE UK By Phone Team Member, Margaret Edmonds.

Having just achieved the early release of my occupational pension on medical grounds, I was asked by Hilary to start a discussion of our experiences of getting pensions paid before ‘official’ retirement.

Everybody’s situation is unique and getting the pension depends on the combination of individual health problems and the provisions of the particular pension scheme. In my case, it was a ‘frozen’ pension from local government employment that finished eighteen years ago and small as it is, it’s a welcome addition to my part-time earnings. When making the application I had to keep remembering that the criterion is that if I was still doing the job I used to do for them, I wouldn’t be able to do it any more. If you are still working for the employer who runs the scheme, it’s likely to be fairly obvious if you are running into difficulties at work, but I had to not only make the point that I’d left the earlier job because fatigue was already catching up with me, but also show that I was now ‘failing’ in the much more straightforward job I’d recently taken on. If it had been the other way round and I was now in a more demanding job than I was eighteen years ago, it might have been more difficult to make out the case for ill-health retirement. Added to this was the need to ‘prove’ my own diagnosis of PPS – not always easy.

If you are still working, the best route is referral to the occupational health doctor (or a doctor providing a similar service if you work for a private company) via the personnel/human resources department and then, whether you are still working or not, agreement from the GP to support the application if asked. The medical practitioner giving the supporting report doesn’t have to be a specialist or consultant.

The civil service pension scheme is similar to local government but other organisations with money purchase based pension schemes may have different criteria. If you have a privately purchased pension you may want to get advice from a financial expert, although they may charge a fee. The drawback is that pension benefits paid early are often reduced and you may want to weigh present need against future need. Early payment of pensions is subject to Inland Revenue regulations and pensions are taxable, although lump sum payments are not.

Perhaps we could put our ideas and experiences of all kinds of pensions together. Email:- Margaret Edmonds <pme.pme@virgin.net>

Write to me c/o the Lincolnshire Post Polio Network, main address and I will put all the responses together in another article.

The LincPIN welcomes Mary McC Our new Facilitator

Some of you may already know my name, but for those who don’t, I’m Mary McCreadie – non-paralytic polio in 1959 – ex-piano teacher/performer – PPS diagnosed in 2000. 2005 – heading for the wheelchair at a terrifying rate!

I’ve just joined the Operations Team as a Facilitator – which is a grand term for someone who is prepared help with posing questions for our E-Mail forum, and to collect and collate pictures and text from all members, for publication in The LincPIN. I am very much looking forward to working with everyone, and hope that I can rely on you, our members, to provide as much grist for our particular mill as possible! The wealth of experience amongst you can be of immeasurable benefit to those who have just been diagnosed with PPS, and are frightened, lonely, or simply uncertain how to manage daily life – or indeed to old hands who simply ‘never thought of that – what a wonderful idea!’

To that end, we are looking for hints on living to pass on to others – how do you manage to do your ironing? How do you wash the dishes when you’re stuck in a wheelchair? How do you cut vegetables when you can’t hold the knife? I know that there are some amazingly innovative ideas out there – and it would be wonderful if we could share them.

We are also looking for any stories about your experience with Polio and PPS – both in childhood and as an adult. Pictures too, would be most welcome!

Please send any ideas by post to:

Mary McCreadie, c/o Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK.

Or by e-mail to: mary.mccreadie@lincolnshirepostpolio.org.uk

The E-mail Forum

As most of you will know, we have an e-mail discussion list which is available to any member who is able to get on-line. It is a marvellous way of connecting people who otherwise might find themselves very isolated and feeling alone. Being able to ‘talk’ to people who know exactly what Polio and PPS is all about, having been there, done that AND have the T-shirt, is often a great help!

There is a wealth of knowledge and expertise amongst members on just about every problem any of us might experience, and being able to ask someone who has already been through it cuts out a lot of unnecessary angst!

Over the last few weeks a number of subjects have been aired, and what follows is a brief taste of some subjects we’ve been discussing, with a few of the answers given.

THERE IS HELP OUT THERE! – ………… Mary McCreadie.

One of the worst things when you have PPS or something like it, apart from simply coping with daily life, is being short of money. Nothing is more certain to give you sleepless nights than worrying about paying bills!

There IS help out there – but you need to know how to access that help. There is a wealth of information on the Internet – as long as you know how to search for it. But for those who are not well enough, or not yet connected, just finding out what is available and what you may be entitled to can be a nightmare. You may be missing out on funds that you desperately need. Over the next few issues, we will be giving you information on various kinds of benefits, and how to apply for them.

An agency I had never heard of – until the day I had a Care-Line installed by my local authority – is the Care and Repair Agency. This agency is sometimes known as ‘Staying Put’ or ‘Home Improvement’ and the work they do can be invaluable to those on low-incomes. Unfortunately, as is often the case with Government departments, whilst most local authorities have an office which deals with these things, titles are not universal, and they do not always advertise what they do. Consequently, the very people who need them most know absolutely nothing about them! (The logic of this quite escapes me!)

The following information has been taken directly from www.foundations.uk.com . The web-site is easy to navigate, and the information well presented.

What Are Home Improvement Agencies?

Home Improvement Agencies are small, locally based not-for-profit organisations. They help homeowners and private sector tenants who are older, disabled or on low income to repair, improve, maintain or adapt their homes. They provide peoplecentred, cost effective assistance, and help to tackle poor or unsuitable housing, enabling clients to remain in their own home, safe, secure, warm and independent. HIAs currently operate in over 300 local authority areas. They are sometimes referred to as ‘Care & Repair’ agencies or ‘Staying Put’ schemes. They are usually managed by:

• Housing Associations

• Local Authorities

• Charities

• Independent Management Committee

MISSION STATEMENT OF H.I.A.’s.

“To enable those in need of support to maintain their independence in their chosen home for the foreseeable future. This may include older people, people on low incomes, disabled people and other groups determined by local circumstances. This would usually be in the private sector, however, local needs may require more flexibility.

This outcome would normally be achieved by supporting people throughout the

repair, adaptation or improvement process, so that the individual is able to remain in their own home in a warm, safe and secure environment. This could also include the direct provision of repair and maintenance services, preventative initiatives, and providing advice on accessing appropriate, including private, finance.”

CORE H.I.A. ACTIVITIES.

Advice and Advocacy: HIAs assist people identify what the real problems may be with their home and how these issues may be addressed. This includes a review of all housing options open to the client including advice on legal entitlements, welfare benefits, financial matters and other support services which the client may need to enable them to remain in their home

Financial Matters: HIAs offer a broad overview to clients of the financial implications of pursuing their chosen option. Whilst for many people, the cost of any repairs or improvements will be covered by a grant from the local housing authority, HIAs also offer support to clients to access alternative sources of income, including raising loans against the equity of their property, ensuring that people receive appropriate independent financial advice.

Technical Issues: Many clients of a HIA are apprehensive about housing repairs carried out to their own home. It is, therefore, a critical role of the HIA to offer both guidance to clients on the required work and assurance that any repairs undertaken will be completed satisfactorily, to budget and on time. Jobs undertaken can range from the very small (such as minor plumbing repairs) to major renovations or the construction of adaptations or extensions for a disabled person. The building work is specified, competitive estimates are sought from good quality vetted contractors and the whole work is overseen by the agency’s technical staff in order to ensure that the finished result meets the needs and wants of the client.

Additional Home Improvement Agency Services

ο Hospital Discharge Projects: Provide a rapid response team to enable older

people to be safely discharged from hospital into their own home through carrying

out essential repairs and adaptations.

ο Handypersons Schemes: Carry out small repairs to the homes of mainly low

income, older and disabled people to enable them to maintain their properties and

live in greater comfort and security.

ο Aids and Adaptations: These schemes organise the fitting of a range of small

adaptations in the older and disabled persons home to assist independent living.

ο Home Security Schemes: To install measures such as door and window locks,

door chains, viewers, external lighting and related security features to vulnerable

peoples homes.

ο Energy Efficiency Projects: Help vulnerable people to identify measures that

can be taken to improve energy efficiency in their homes and provide practical help

and assistance to implement.

ο Home Safety Schemes: Offer HIA clients the option of having a detailed check

carried out to identify ‘risk factors’ that could result in an accident in the home and

recommend remedial action.

ο Disabled Persons’ Housing Service: Aims to achieve appropriate and

affordable housing solutions for people with disabilities through the provision of a range of services which help with access to adaptable rented and owner-occupied housing, and adapting properties to meet the needs of people with disabilities. ο Home Maintenance Project: Aims to emphasise the importance of regular maintenance work in order to avoid crisis or major works at a later date.

HIAs may also provide the following services

∗ Unsolicited Calls Helpline

∗ Disabled Persons’ Project

∗ Integrated Home Maintenance

∗ Painting & Decorating Project

∗ Gardening Services

∗ Decorating Services

∗ Community Alarm Services

Daily Living Support – How Home Improvement Agencies Contribute To

Housing, Health and Social Care Services

HIAs have been innovative and creative in developing and expanding their services to work across housing, care and health sectors involving many partners, professionals and individuals. This includes local authority housing and grant officers, occupational therapists, health workers, social services and many others.

HIAs have proven to be model organisations in “joint working” to help to deliver the objectives of the following national and local strategies:

♦ Housing: Working in partnership with local housing authorities to target the

most vulnerable older, disabled and low-income people living in the worst housing

conditions and provide them with advice and assistance to maintain, repair or adapt

their homes to meet their needs.

♦ Community Care: Enabling older and disabled people to remain living

independently in their own homes in greater comfort, security and safety.

♦ Crime and Safety: Addressing the safety and security aspects relating to

vulnerable peoples’ homes.

♦ Energy Efficiency and Fuel Poverty: Identifying measures that can be

undertaken to improve energy efficiency and reducing fuel bills in the homes of

those in highest need in the private sector.

♦ Health: Contributing to the Health Improvement Programme and other health

strategies by addressing cold, damp housing conditions, reducing the risk of

accidents and contributing to hospital discharge planning.

♦Neighbourhood Renewal Strategy: Improving the poor housing of the most vulnerable people to help narrow the gap between the most deprived neighbourhoods and the more affluent areas. Contributing to improving health, security and the physical environment and helping towards neighbourhood renewal. The most important thing to do first, is to ring your local authority, and ASK!!! Your Occupational Therapist will know who to put you in touch with, or if you don’t have one, simply speak to the lady on the switchboard at your local office. mary.mccreadie@lincolnshirepostpolio.org.uk

Obtaining suitable wheel-chairs through Social Services/NHS what’s the best way to go about it?

To others having problems with Social Services, I got myself a booklet from the local disability equipment shop and picked out all the things I thought would be useful to me and then asked the OT’s things like “is there anything that would help

me with ……..” feigning ignorance and got mostly everything I needed.

Just a few thoughts about wheelchairs. All the OT said to me was, “What are your needs?” I’d barely seen a wheelchair before! It certainly helps to be knowledgeable before hand with brochures, and having checked out wheelchairs somewhere else first, like a shop or Disabled Living Centre.

The Dept. of Health’s National Service Framework for Long-term Conditions, OBLIGES the NHS wheelchair clinics/assessment centres to supply wheelchairs ACCORDING TO NEED, and not according to fixed supply, as has been the case to now. Applying for a powered indoor chair is your first step – if you have a powered indoor chair you can then apply for a powered outdoor chair – that’s the way the system is set up. So putting your needs in writing is definitely worth the effort. The NSF leaflet can be obtained by logging onto: www.dh.gov.uk/longtermnsf

Sheltered Housing – or stay at home?

I understand your dilemma …it’s important to stick up for what you want, but obviously very stressful. I don’t know if anyone’s already mentioned this, apologies if to them if they have, but there is a charity called ‘Care and Repair’ which offers help and advice with housing for older people and disabled people. They are supposed to be able to help with adaptations. Their website is

www.careandrepair-england.org.uk/

I know some of you do not feel that you want to be on a retirement type place but believe me in some ways it could be better, as people look out for you more. It is difficult if it is away from your friends and family but true friends will be there wherever you live and you would soon make new ones.

Tips for making life easier in the house:

I’ve had all my low level cupboard shelves removed and replaced with sliding chrome baskets and a carousel under the sink area. What a difference it has made. I’m able to walk around the bungalow so this has helped me keep my balance when trying to reach into cupboards. Also with limited use of only one hand it helps when trying to lift things onto the surfaces. My son’s friend has raised both my fridge and freezer units about 2feet, fitting small cupboards under them. This is a great success – I can now clean them without falling into them!! I’ve a small trolley to put items on to transfer from fridge or freezer to surfaces. We have a Wet room downstairs. Fully tiled floor and walls. Floor slopes in to the shower drain. Shower stool to sit on. Toilet is up on a breeze block base tiled the same as the floor… so no plastic rise toilet seat!!!!!

I have an ironing board fitted into a drawer, another polio I know and uses a wheelchair had hers fitted into the middle drawer.

I find my worktops too high too! Until I can have a new fantastic kitchen (in my dreams!) I sit on my perching stool, open the cupboard door and put

my feet on the lowest shelf. I find this makes chopping etc easier. Hilary can work more efficiently standing as her arms need to work down at 45 degrees. So she works at the sink, leans against work surfaces, and can rest one arm against sink side whilst using other, etc. sitting on a perching stool did not work.

Another disabled lass I know had her units on raise and lower so that she could use them at her height and her husband at his….. Still its really a good idea to sit in a wheelchair and practice doing all the actions you might have to do and see what might be necessary for the long term. Try before you buy or get given equipment. Why not go with at least one other disabled person to a Disabled Living Centre and giggle and try out all the stuff available. Its so much easier than doing it on your own.

Joint replacement and PPS

With regard to Larry’s [USA] question about joint replacement, I would “shop” around and find out what a surgeon’s reputation is, much like going into your nearest superstore and reading the labels on the packet before buying your food. With all the appropriate courtesy which we can muster, we must ask medical professionals what their success rates are with hip, knee and ankle replacements – some of these specialists actually don’t mind being asked these questions – if they do – it may be a sign to go elsewhere! Assertiveness pays off in the long-run, and we do for others as well as ourselves, when we ask reasonable questions of health care providers. Ask how many Polio Survivors they have operated on.

I am having the same reservations as you as this is something I am supposed to have done. I did note in a Canadian PPS newsletter someone wrote that they had had a hip done and asking others about knees and hips many said they wish they had not had it done.

My Doctor is good and I asked for a surgeon that specialises in knee replacement Ops and he recommended this one at the Orthopaedic hospital in Birmingham. Although I have seen registrars etc on the last two visits I have had it agreed that if I go for the Op the surgeon himself will do it because of the complications with PPS.

Through experience I have found always ask to be referred to a specialist who actually specialises in your complaint. Ring the hospital when you have the appointment to make sure you are on his list, if not ask for another appointment. It is imperative to get your muscles strength accurately assessed. Manual testing will not provide accurate results. If you do not have the muscle sustaining and repetitive power to sustain the post operative therapy you could have problems. Ask to be assessed by the Post Operative Therapist before the operation. Ensure that they watch you stand from chair, get up from bed, get out of car, etc. Remember we use trick movements and other muscles to assist us and its so much easier on both patient and therapist if you do this pre op and practice having that limb out of action, what exercises you are going to have to do. Remember we take four to five times longer to recover. It might also be helpful to visit the ward pre-op so they can see how you do things and you can see what the bathrooms etc are like.

Alas, there’s no space to quote from every subject discussed! Suffice it to say that the conversation also ranged from health to floor-coverings, and many points in

between. Questions invariably lead on to other subjects, which in turn raise further questions and suggestions, just as in good conversation.

The E-Mail forum is a superb way of disseminating and obtaining information about everything and anything that affects us. I know that not everyone has a computer, but for those that do, it would be wonderful to hear from you, so that our discussions can be even fuller and more varied. Any questions or ideas would be warmly welcomed – whether it’s about general health, Social Services, equipment, attitudes from the public or the NHS – we need to hear from YOU!

Join the LincPIN e-mail forum: Email mary.mccreadie@lincolnshirepostpolio.org and I will confirm your membership status and get you subscribed.

NOT ON THE INTERNET? — JUST DROP ME A LINE.

But we would not want anyone who doesn’t have a computer to feel left out! We need your input too. Your questions can be discussed on the forum, and copies of replies sent to you by post, and/or published in the next issue.

Polio and Post-Polio News—A service we provide.

Still on the subject of computers – did you know that Lincolnshire Post-Polio Network has another e-mail distribution list of articles from around the World related to polio, post polio and disability issues to which you can subscribe?

It is known as PandPPNews. Summaries of all the articles and links to the source can be found at the Polio and Post Polio News web site http://mt.lincolnshirepostpolio.org.uk/pandpp-news/. To subscribe to the email notification service follow the Choose and Subscribe link in the left hand column.

Announcement to Members.

A change is being made to the LincPPN’s Annual General Meeting date, moving it from its present timing in October forward to June, and it is hoped to implement this change by the end of February 2006. As a consequence of this, a change in the current 2005/2006 financial year from 12 months to 8 months must also be made as the accounts have to be audited in advance of the AGM. The reason for both these changes is to make the AGM more accessible to more members, at what we think we will be an easier time of year for many members to travel, with daylight hours being the longest. After considered discussion and consultation of our LincPPN’s constitution, this adjustment does not require a constitutional change. This matter was discussed both at Committee on October 21st and at our AGM on October 22nd, 2005 with members in attendance. At that AGM, those attending were largely in favour of the change, and saw no reason for not implementing this as soon as possible.

We respectfully request that if any member has an objection to this change, they should write giving their reasons by February 28th, 2006, when they will, of course, be considered by the committee. In the long-term, we think that the membership will welcome this change for the better.

With thanks, Mary Kinane Chair.

Ferrules (Crutch/walking stick tips)

Anyone using a stick or crutch will know that sickening feeling you get as your stick starts to slide out from under you at break-neck speed when there is the slightest drop of water about. Ferrules supplied by your Physio. Department will normally be the standard grey ones – which are positively lethal in bad weather, or when there’s a wet floor to be negotiated. But did you know that there are different types of ferrules – ones that are designed especially for wet weather, or icy conditions? I didn’t, until one of our members told us about them in one of our e-mail discussions. He kindly gave us the address for a company in America who will supply especially crafted ferrules which are guaranteed to be safer in the wet than the ordinary ones: www.fetterman-crutches.com – certainly worth a visit, especially for those of you in America. Their goods are a touch on the expensive side, but look pretty effective. From the US, you can call them Toll-free on 1.888.582.5544 for information. There are also quite a few UK sites, and I contacted the one which seemed to supply what I needed: www.bnow.co.uk (Benefits Now, 20 Lark Rise, Newport, Isle of White, PO30 5YJ. Tel: 01983 539954) The ferrule is called the ‘Ingrid Convex’ – there are several more, including one with a fold-away ice spike.

They supplied me very quickly with the best ferrules I’ve had in 10 years of using an elbow-crutch! They’re made of black rubber, and have what looks like a spiral tyre tread. (picture on back page) So far, I’ve been able to test them in both wet and icy weather, and felt much more secure than at any time previously. I even felt more secure using the stick in the house. Obviously, I can’t yet say how long they will last in comparison with the usual ones, but it looks as if they’ll wear well. I’ll let you know! The ferrule is called the ‘Ingrid Convex’ and there are several other designs in this range, including one with a fold-away ice spike.

At just over £5.00 each, they cost twice as much as the ordinary ones (if you buy them in the shops) – but what’s a few pounds compared with your safety?

I spoke to my local Physiotherapy. Department today, and they have never heard of any ferrule other than those slippery grey ones! They expressed great interest in my new ones, and have actually asked me to pop in and show them. I’m hoping very much that the ‘interest’ will actually result in more people being at least told about these ‘wet-weather’ ferrules, so saving a few broken or sprained legs or arms!

My wheelchair repair guy said he had sort of good news for me… “We’ve found the problem….

Your battery needs a new wheelchair!”

A guy walks into the doctor’s office and says, “Doctor, you’ve got to help me. I pass gas HUNDREDS of times a day.” He tells the doctor that it’s silent and odorless. Then he says, “Doctor, you won’t believe this but I’ve passed gas ten times while we’ve been talking.”

So the doctor gives him some pills, “Here, take two of these every day and come see me in two weeks.”

The guy comes back in one week complaining, Doctor, what’s in these pills? I still have the gas, it’s still silent, but now it smells absolutely TERRIBLE!”

The doctor says, “Well that takes care of your sinus problem, now let’s work on your hearing.”

Schematic of Breathing Tests [Article pages 6 – 9 refers]

The top chart in red is the results from a Non Polio who takes in a deep breath and blows it out steadily and then breathes normally for five breaths and then repeats the deep breath in and blows it out steadily.

The middle chart – purple – is a schematic of the likely results if a Polio Survivor who is reporting breathing and sleep problems due to muscles fatiguing was asked to repeat the tests at the same time intervals. NB the depth of breath in/out reduces each time.

The bottom chart – blue – is a schematic of the results of a test done at Papworth Hospital 31st November 2005 where the Polio Survivor was asked to do the same test as the top chart in red, BUT was told to repeat this when they were ready, take the time you need to recover to do the test again to the same level. The same method was used for all the tests. The amount of resting time between tests was not recorded, although the tester did agree to add notes to the test results showing that the patient fatigued easily. The figures recorded on the final form – all virtually the same result – were read by the Consultant as ‘fine’, there is no need to see you again. Pacing and resting works – but if we still have problems doing this then they need addressing.

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