For Polio Survivors
If you have clicked on this link then most probably you too had polio in your earlier life. Learning that there is a later stage following recovery and many stable years probably comes as a bit of a surprise or maybe it might be a relief for you, as it was for me when I found there was a reason for the seven years of undiagnosed reported symptoms of new weakness, new fatigue and functional decline.
Who can get Post Polio Syndrome?
You must have nerve damage to your muscles caused by a Polio Virus. Most likely you will have a diagnosis of Paralytic or Non Paralytic Polio.
However, there are other reported situations:-
You were diagnosed with Abortive Polio which Professor WJW Sharrard demonstrated can cause up to about 44% nerve damage to muscles without clinically evident weakness being found at examination.
You are a sibling or close contact of someone who had Polio and nerve damage consistent with polio damage can be found on EMG, Nerve Conduction Studies and/or Muscle Biopsy.
How many Polio Survivors will get Post Polio Syndrome?
There are a variety of percentages given in many medical artilcles from 22% to 80%. There are so many variables that it is not possible to state if you will or will not have deterioration earlier than aging. There is no set pattern but it has been reported that the higher the level of physical activity you have done during those best years the more likely you are to experience PPS.
Dr. Frank Lønnberg used this graph at an Irish Post Polio Conference. With added comment from a Polio Survivor it explains that some muscles do not have the nerve supply consistent with someone who did not have polio at our age.
So where do you start?
From personal experience and talking to many other Polio Survivors over the last 16 years our biggest issue is having our symptoms assessed in a way that will corroborate all that we are reporting.
There are two main issues.
1. What facts do you need to tell each health professional that you see in the time that has been allotted for the appointment.
2. Where do you go, and who do you see to get the best result.
Lets start with the first issue.
From our own experience and talking to hundreds of others we learned that we needed to be more specific with how we reported the issues we were having.
Many health professionals have been taught only a few very basic facts about polio – a short lecture often alongside Leprosy with a few photos of people in iron lungs – by their Colleges of Medicine and may not have had any continuing education on polio or post polio syndrome. They may not be aware of the levels of recovery.
It is possible that having lived with polio for many years you are more knowledgeable about polio and its effects on the body than some health professionals.
The problem was that as we started to have issues we developed new ways of achieving actions and our ‘norm’ kept changing and often without our acknowledging it even to ourselves. We did not ‘see’ what we did not want to ‘see’. For instance new wrist weakness caused a change in the way I scrambled eggs from wrist to elbow rotation and with new arm weakness I was sliding saucepans instead of lifting them. It was not till I started looking at how I did all my actions of daily living that I realised that I was doing things like this. It is the change in the way you do actions of daily living that are the important facts to report to health professionals that you consult.
To help you look at your life we developed a self assessment tool, My Polio Life, which has a variety of ways of looking at your life and building up a file of information. See My Polio Life Example of responses of how different people answered the questions.
We recommend making up a file of information on your life that includes information from this form, sectioning off the file into areas, e.g. Contact details, my polio, my recovery, my stable years, my new problems, etc. Include copies of newspaper articles, old letters, photocopies of any information that you think might be relevant. Just one example are photographs that show the difference stages of your life, especially what you achieved which the health professional may not believe was possible considering how you are now.
Remember this file is for your use, and whilst it might be helpful to take this with you to appointments it is not a good idea to take it out of your bag unless you need to refer to something. Time is short and we advise making up one or two sheets of the specific information that you need to refer to for this appointment. A second copy for the health professional might be useful but health professionals have their way of working and they may not want this.
Using My Polio Life as a base for recording information on your life we suggest that you start with the page you think most relevant. We could not provide enough space for you to write answers in full. Using a computer or pad of paper start recording your answers in full and then pick a few words, short phrase to add to your ‘My Polio Life’ to trigger your memory.
It is a good idea to file or photocopy relevant documents, letters, test results in the file.
Getting ready for an appointment.
Step 1 Who are you going to see and why and do you know how long the appointment is planned for and if any tests are going to be carried out?
The reason we suggest that you do this for each appointment is that if the appointment time allotted is only ten minutes then there will be questions to you and the answers and most probably a short examination followed by some statements from the doctor. This means that you may get about two minutes to get across what you want to say and ensure that the picture you paint in the health professionals mind is the same as yours.
Step 2 Write down the most important facts that have triggered this appointment. What is the best way that you can relate these facts. Work out ahead of time how to word this or maybe you could try asking to demonstrate the action or use pictures/photos or charts.
Step 3 The Appointment
Ensure you know where you are going and where the car park is and how far you might have to walk/ride/be pushed to the clinic.
Preferably get someone to drive you there and arrive early enough to have a few minutes to recover from the journey.
Arrange with that person to take notes and with your permission remind you of anything you have forgotten to say.
Step 4 Make up an Appointment Sheet. [Two copies and with plenty of room to add comments because some health professionals have added notes to this sheet and added it to your medical file, others have not wanted the sheet.]
Here are some ideas of facts you might need to record.
Your Name, Address, Phone Number and email address.
Date of appointment and with whom including all their contact details.
Polio. The date, age and where you caught polio and the diagnosis and any equipment you used at the time, e.g. Iron lung, callipers.
Recovery. The level to which you recovered and your highest achievement/s.
Other relevant test results for this appointment.
Current issues starting with the most important or most demonstrable depending on who you are seeing.
Here are a couple of examples of visual ways that quickly demonstrate your new issues.
Remember the time allotted for the appointment is important. Only raise issues that this health professional can deal with. You could list the other issues for their information.
Before you leave ensure you have raised all you wanted to and if you have run out of time ask for a second appointment. Ensure the person with you has recorded what has been said and if you require any further tests etc. Thank the health professional.
Where do you go and who do you see?
This will depend on which of your symptoms are causing you the most problems, where you live, the cost of travelling and possibly hotel accommodation, if you have someone to go with you, your level of disability and if you have enough energy to manage the appointment, etc.
Once you have looked at all these facts you should first approach your GP for their advice as to your choices of venue using the new ‘Choose and Book’ system.
As well as this consult Polio Support Groups who live in the same area as you as to where they have found the most help.
If Polio Survivors Network is unable to help you then contact:
British Polio Fellowship [www.britishpolio.org.uk]
Scottish Post Polio Network [www.sppn.org.uk]
Post Polio Support Group [www.ppsg.ie]
European Polio Union [www.europeanpolio.eu]
Polio Australia [www.polioaustralia.org.au]
Post Polio Network RSA c.c. [www.postpolio.co.za]
Using aids, assistive devices and help from others.
It is not easy changing the habits of a lifetime from being able to do a task to having to ask for help or return to or start using an aid or assistive devices.
However, I can report that whenever polio survivors get together and discuss this issue over and over again we say ‘once I tried this I found it so much easier and wish I had tried it much earlier’.
Aids and Assistive Devices. It is much easier if you can find someone else who has similar needs to go together and look and try what is out there. It is imperative that you try before you buy if at all possible because items can be expensive and many of us have been advised to purchase items and have later found that another version would have been much better. This is one of the areas where our Members Email Discussion List can help where we share information on the items we use so you have more information on which to base your choice.
Local or national exhibitions are great places to go. Try Naidex [www.naidex.co.uk] or Mobility Roadshows [www.mobilityroadshow.co.uk] or look for your nearest Disability Living Centre, [www.dlf.org.uk] or contact your local Disability organisations.
Telling other people about my PPS. It is much better for us if we can write a short piece like ‘I had polio in my earlier life and up till now have managed so many things but there is a later stage to this condition where tasks become a little harder. I still want to do as much as I can but there are times I will need some help. Although it is hard to make the change I now realise there will be times when I will no longer be able to do things on the day I want. If I can let you know that I would like to do ‘x’ and you could say ‘I could help you on y day’ and we could plan that.
WHAT WORKS FOR ME –