PSN Library Files

Dr Henry writes about the Thyroid Gland

Dr. Henry writes about the thyroid gland

There has been some discussion recently about the thyroid gland, and thus I feel inclined to share my experience with this gland. It is one of the endocrine glands meaning that it secrets a hormone, thyroxine, and there is a feed back system for maintaining therapeutic blood levels for this hormone to the brain, more specially the pituitary gland. Thyroid hormone regulates the rate of the body’s metabolism. This gland is of interest to psychiatrists because an elevated or lowered thyoroxine level causes emotional changes. An elevated thyroid can cause anxiety, restlessness, hyperactivity, increased heart rate, and increased appetite without weight gain. An extreme of hyperthyroidism is called thyroid storm, and if untreated, can result in congestive heart failure and death. A depressed thyroid gland or lowered thyroid hormone level can cause depression, lethargy, fatigue, unexplained weight gain, and psychomotor slowing. There are many other symptoms associated with thyroid disease that I did not mention.

For years doctors have prescribed supplemental thyroid to individuals whose blood levels of thyroid are low normal. It has even been used by some as a supplemental treatment for depression. Thus it would not be that unusual to add supplemental thyroid to the drug regimen for trying to treat the fatigue symptoms of PPS as long as the blood level of thyroid hormone did not exceed the normal range. Many of us take harmones for various conditions. Some of these familiar hormones are estrogen, progesterone, insulin, cortisone (Prednisone), epinephrine (adrenalin), growth hormone, and DHEA.

In addition to the signs and symptoms of thyroid disease, there are a number of blood tests available to assess thyroid function. In most labs these tests are linked together as a thryoid panel of tests which include T3, T4, T7, and TSH (thyroid stimulating hormone secreted by the pituitary gland). If the thyroid level in the blood is low due to an inactive gland, then the TSH is usually elevated as the pituitary gland is trying to correct the problem by secreting more TSH. If the thyroid gland is overactive, the TSH is usually lowered. This is an elementary explanation, but gives you some idea how feedback systems work in the human body. In addition to blood tests, the thyroid gland can be further evaluated by thyroid scans and X rays. For the most part, the thyroid gland is well understood. Although, the exophthalmos (bulging eyeballs) as a result of Grave’s disease (hyperthyroidism) is not well understood to my knowledge.

Hopefully, PPS will be better understood with time, and I hope not too much time. Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

6th May 1997

See also Thyroid Conditions in our Associated and/or Symptomatically Similar Conditions Directory

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© The Lincolnshire Post-Polio Network 1998 – 2010.

© Copyright Henry Holland 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 2nd March 1998

Last modification: 24th January 2010.

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Dr Henry writes about FDR and PPS

Dr. Henry writes about F.D.R and P.P.S.

Regarding whether FDR had signs and symptoms of PPS, in retrospect, I believe he did show signs of PPS at least during the last year of his life. I have read Dr. Howard Bruenn’s (FDR’s cardiologist) medical article on FDR’s illness. This article was published in the Annals of Internal Medicine in 1972. It is true that FDR had significant hypertension and congestive heart failure. However, for the most part, except for being unable to totally stop smoking, he followed the treatment protocol and showed signs of improvement. During that last year, he rarely used his braces, gave very few speeches standing, had the developement of weakness in his hands making it more difficult to write and transfer, experienced more fatigue requiring more sleep, curtailed swimming and physically exerting himself, and seemed somewhat depressed as he did less socializing. As many of us with PPS, he had other problems of aging such as hypertension, less energy, and more mental strain. He got polio later in life and did not have as much life energy to fight it as long as those who got it as children. Thus, in my mind, getting PPS after 23 years of struggling with significant residual damage from polio would make him highly vulnerable for PPS. Of course, we will never know for sure, but in retrospect as I said, I believe that he had signs and symptoms of PPS.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

2nd May 1997

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© The Lincolnshire Post-Polio Network 1997 – 2010.

© Copyright Henry Holland 1997 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 2nd March 1998

Last modification: 22nd January 2010.

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Spinal Tap for PPS NO

Spinal tap for PPS? NO !!!

by Tom Walter

Tom Walter is a Polio Survivor. Up until a few years ago, 30 years or so on from recovering from Polio, he walked unaided with only a slight limp, working and living a normal life. He didn’t even know any other people with Polio. He now has difficulty swallowing and breathing and spends most of his days in a wheelchair or propped up in bed. With his laptop computer he collects and dispenses advice and information on post-polio syndrome. Tom, or TominCal as he is known by his email name, is highly regarded and respected as a source of reliable information by the online post-polio community worldwide. In 1997 he was interviewed by Susan Kelleher of the Orange County Register for an article “Polio strikes back”. The article is no longer freely available at the Orange County Register site. It can be located via their archive section (using search keywords “polio” and “strikes”) but access to the complete text requires a small payment.

LincsPPN Web Administration.

Over the past couple of years some interesting and exciting discoveries have been made about the polio virus that were unknown before. Researchers at the National Institutes of Health in Bethesda, Maryland (USA) and at the Pasteur Institute in France have been able to identify fragments of mutated polio virus RNA genetic material from the spinal fluid of people who had “wild” polio (like most of us) and from the

spinal fluid of those who had the polio vaccines.

It was previously not known that polio virus RNA had any capability whatsoever to survive and/or reproduce in any form. And it is likely that advances in the fields of biotechnology and immunochemistry derived directly or indirectly from work on AIDS gave the tools to make these surprising findings. (By the way, it does not appear that these fragments are a “reactivation” of the polio virus itself or that it is “communicable” in any way in this form.)

A study from France reports that of 10 people with Post-Polio Syndrome, five of them also had antibodies present for these mutated virus fragments and five of them did not. However, at this time, there has been absolutely no cause and effect relationship established from this data that could assist in establishing the cause of PPS or in diagnosing PPS or in treating PPS. That may be in the future.

Unfortunately, some researchers and some doctors purporting to diagnose and treat PPS have jumped to the unwarranted conclusion that PPS can be diagnosed or “ruled out” by analyzing fluid taken during a spinal tap. Many of us had this procedure done at the time of onset of the polio virus to help in diagnosing it. Spinal taps can be very painful and lead to serious complications. Based on our knowledge at this time, there is absolutely no value to having a spinal tap done now for the diagnosis or treatment of PPS.

This was my “common sense” conclusion after reading the literature and discussing it on the Internet with

those more knowledgable in the sciences. I double-checked with Dr. Lauro Halstead, a prominent PPS researcher, writer, and Supervisor of the Post-Polio Clinic at the National Rehabilitation Hospital in Washington DC, and he agrees emphatically.

A spinal tap may be appropriate to diagnose or rule out some other serious disease; or it may be undergone for purposes of legitimate research. But, at this time, it has no value in the diagnosis and treatment of PPS. Before undergoing one, I would certainly want to know more about what information was being sought, how the fluid would be analyzed and what the results would mean.

Tom Walter

May, 1997

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Does Post-Polio Cometh After a Fall

DO PPS COMETH AFTER A FALL?

 

Richard L. Bruno, PhD From “New Mobility” magazine, May, 1997

 

Supplied by Tom Walter with permission of the author

 

About once a month I get a call from an attorney somewhere in these litigious United States. I am asked to be the expert witness for a polio survivor who’s been rear-ended in their car, hit by a bus, taken a header down some stairs or simply slipped and fell.

 

Regardless of the type of accident, the lawyer always asks the same question: Can a traumatic event trigger Post-Polio Sequelae, the new and sometimes disabling muscle weakness, fatigue, pain and respiratory problems that occur is as many as 77% of polo survivors?

 

And regardless of the type of accident, my answer is always the same: Yes and No. PPS is not a disease that is just waiting inside polio survivors for a trigger to set it loose to wreak havoc throughout the body. So trauma can’t trigger a disease that is not there.

 

But our 1985 National Survey did show that PPS symptoms are caused by physically or emotionally stressing the poliovirus-damaged motor nerves that remained after survivors’ original bout with polio. Many polio survivors have been able to function for 40 years with about half the spinal motor nerves of someone who didn’t have polio.

 

So breaking a leg in a fall, having major surgery — even a whiplash injury — could sufficiently stress the remaining polio-damaged motor neurons to “blow a fuse.” When those fuses blow, neurons function less well and muscle weakness, fatigue, pain may result.

 

Many polio survivors are terrified about losing function after trauma. One survivor said, “I am afraid if I fall and break something I will never walk again.” Fear also causes polio survivors to postpone even necessary surgery because, as one survivor put it, “I know I’ll never survive the anesthetic. I will spend the rest of my days in an iron lung.”

 

Because of the fear that an injury or surgery could cause PPS, we wanted to find out just how many of our patients actually experienced new symptoms after trauma, what those symptoms were, whether they spread throughout the body and whether they were irreversible or treatable.

 

Surgery, Spills and Other Ills

 

We reviewed the histories of 244 consecutive polio survivors evaluated by Kessler Institute’s Post-Polio Service who had no other conditions that might cause new fatigue, weakness or pain. Of those patients, 44 (18%) said that their PPS began after a traumatic event.

 

The typical patient was 59 years old and had polio at age 8 in the early 1940’s. There were as many men as women reporting the post-trauma onset of PPS.

 

The traumas that preceded new symptoms included medical illnesses and surgeries: pneumonia, viral infection, hysterectomy, mastectomy with chemotherapy, pregnancy; fractures of the ankle, leg or hip; falls, auto accidents, and injury or surgery to the leg (ankle sprains, knee surgery, hip or knee replacement) or the back (herniated discs, laminectomies, spinal fusions).

 

The most common injury was to the leg (71% of patients) while 26% had back injuries. Regardless of the type of trauma or location of the injury, the most common symptom reported was new muscle weakness (55% of patients) followed by pain (34%) and fatigue (11%).

 

There was no evidence that new symptoms began in an injured area and then ‘spread’ throughout the body. Seventy-one percent of patients had new symptoms only in the body area that had been injured, while 26% had symptoms in the injured area plus one other nearby location.

 

For example, 40% of those who injured one leg developed weakness or pain in the other leg. This is a common problem for polio survivors, who compensate for injury to one part of the body by overusing another part whose nerves were also damaged by the poliovirus. Only 5% of patients developed symptoms in more than two body areas. One patient who had a hip replacement reported ‘loss of muscle tone all over,’ while another who had been in a coma after an auto accident reported weakness in all of his muscles. Two patients who had had fractures, two with back injuries and one with an ankle injury reported new fatigue.

 

However, no patient reported that their trauma “triggered” symptoms unrelated to the injury, such as arm weakness after breaking a leg or difficulty swallowing following a knee replacement.

 

Can Post-Traumatic PPS be Treated?

 

All of the clinical experience and research on treating non-traumatic PPS supports one conclusion: If patients decrease physical and emotional stress their symptoms will at very least stop progressing and typically will get noticeably better. Does this hold true for post-traumatic PPS?

 

There’s good news and bad news. The bad news is that the majority (63%) of patients with post-traumatic symptoms refused treatment altogether or refused to complete therapy for their symptoms; more than twice as many post-traumatic PPS patients actually quit therapy.

 

What might cause this? Seventy-seven percent of those who had a psychiatric diagnosis refused therapy, versus 53% of those without psychological problems. The most frequent psychiatric problem was a major depressive episode; 89% of those who were depressed refused therapy.

 

Depression has been identified before as a significant cause of therapy refusal in polio survivors and highlights how important it is for psychological problems to be identified and treated if therapies for PPS are to even begin.

 

The good news is that 86% of patients regardless of the type of trauma or severity of their injuries had

 

significant reductions in pain, fatigue and muscle weakness after complying with therapies known to be effective in treating PPS: reducing physical and emotional stress, using appropriate assistive devices, energy conservation, adequate rest and the pacing of activities.

 

The remaining patients experienced a reduction in some symptoms, especially pain, but continued to report muscle weakness or fatigue. Two patients who did not stop strenuous work or recreational activities reported slowly increasing muscle weakness and pain over several years.

 

Another patient who had been thrown to the floor of a van in 1995 reported that muscle strength and endurance in her legs increased only slightly after therapy even though her severe back pain has been eliminated. It is noteworthy that this patient had completely recovered from two previous traumas: a fall early in 1995 that fractured her lower right leg and another auto accident seven years before that herniated a disc. This patient’s ability to recover from two previous traumas is also good news.

 

For each of our patients who reported PPS symptoms after a trauma there was at least one other patient who had had the same trauma but did not develop PPS. So while trauma can be sufficient to cause PPS, PPS does not necessarily “cometh after a fall.”

 

The Golden Rule

 

These findings in our patients should put polio survivors’ minds at ease. Neither major surgery nor even a fall that causes a fracture will necessarily push polio survivors down a slippery slope toward total disability. Still, caution must be exercised since damaged motor neurons make polio survivors more susceptible to problems that typically do follow trauma.

 

A leg that has been in a cast for months can become weak, as can the opposite leg that has had to take up the slack for its damaged partner. And bed rest after surgery can more easily cause deconditioning and fatigue in polio survivors.

 

However, post-traumatic symptoms in polio survivors should not be treated aggressively as they often are in those who didn’t have polio. All PPS need to be treated carefully and slowly.

 

Polio survivors and their therapists should not assume that a leg weakened after being in a cast has merely ‘been resting too long’ and will respond to an aggressive program of weight lifting.

 

Polio survivors who have had surgery should not be rushed out of bed to prevent deconditioning, because the lingering effects of anesthetic and post-operative pain are more likely to cause falls than to prevent fatigue.

 

Regardless of the cause of PPS the “Golden Rule” for polio survivors always applies:

 

If an activity causes fatigue, weakness or pain, don’t do it !

 

Doctors, nurses, and therapists must listen carefully to their patients — and polio survivors must listen carefully to their own bodies — to determine how much exercise or therapy causes fatigue, weakness or pain, and to stop before those symptoms appear, so that therapy for PPS does not become just another type of trauma.

 

The experience of our patients is that post-traumatic PPS are treatable if polio survivors follow through with therapy. But even more important is that many traumas can be avoided, like the falls and fractures caused by compulsive overdoing, ignoring new muscle weakness and refusing to use a needed brace, cane

 

or crutch.

 

For polio survivors physical overexertion, like pride, does goeth before a fall.

 

Dr. Richard L. Bruno is director of the Post-Polio Rehabilitation and Research Service at the Kessler Institute for Rehabilitation, Saddle Brook, NJ. He is chair of the International Post-Polio Task Force.

 

The Lincolnshire Post-Polio Network

 

Registered Charity No. 1064177

 

An Information Service for Polio Survivors and Medical Professionals

 

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to The Secretary, Lincolnshire Post-Polio Network PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840 Email: info@lincolnshirepostpolio.org.uk Web Site: www.lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/kessler/accident.html> Created: 30th July 1997

 

Last modification: 30th January 2010.

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Experiences Adapting To BiPAP+Mask Technology

Experiences Adapting To BiPAP+Mask Technology David Ronfeldt

The following memorandum was prepared by David Ronfeldt at Joan Headley’s request for a recent GINI conference.

MEMORANDUM

TO: Joan Headley (GINI)

FROM: David Ronfeldt

DATE: May 1997 (revised and updated from earlier versions)

SUBJECT: Experiences Adapting To BiPAP+Mask Technology

At your request, this memo elaborates on my difficulties adapting to the BiPAP+mask technology, and offers some points that may be useful for other people to read who are concerned about adapting with difficulty.

BACKGROUND

After getting out of the iron lung, in which I spent many months during 1949-1950, I was able to breathe quite well on my own, despite limited vital capacity, until 1978. That year, I was hospitalized twice with respiratory failures due to a loss of ability to breathe and sleep at the same time–the onset of PPS, I eventually learned. After that, thanks to the care of my Kaiser-Permanente doctor and to assistance at Rancho Los Amigos, I began using a cuirass (chest shell) to sleep at night. This (and related support provided by Lifecare) proved an excellent solution until 1994, when my cuirass ceased to fit well, and I was unable to find a replacement in my size or to have a custom cuirass made competently by an outside vendor.

Thus began my effort to switch to mask ventilation and a BiPAP machine available through a Kaiser related vendor, Homedco (now APRIA), in December 1994–an effort my doctor had actually begun suggesting months earlier. I rushed into the transition, trying to force my way during the holiday break while taking time off from work. It turned into a major ordeal; and after a couple weeks of uncertain ventilation, mounting sleep deprivation, and erratic progress despite efforts by all parties to give me good advice and get me going in the right direction, I retreated back to a modified old cuirass for several months.

Then I renewed my effort to make the shift, this time using a gradual approach in which I typically tried to start a night’s sleep on the mask and switched to the cuirass after a few hours to complete the night. I also

used afternoon catnaps to gain additional experience adapting to the mask. Eventually, over about a six week period, the time spent on the mask lengthened.

By now (May 1997), I have spent about two years straight using only the mask for the respiratory support I need at night and with daytime naps. I have been fully adapted for at least a year. I cannot say that I really like this new technology as much as I did the old, but it works, and I am doing well on it.

THREE STEPS TO ADAPTATION

Because of this experience, I’d say that the process of adaptation–at least for individuals who, like me, have a difficult time–may be broken down into three steps (or tasks, or phases). And I would urge patients who have a rough time at first to persist, while keeping in mind that the process could–even should– involve a gradual transition spread over a few months. It may require occasional retreats to an old technology, and considerable experimentation with the machine settings.

Step One: Get Accustomed To The Mask

The first step is to get used to the mask–that wheezing, pulsating, grating thing on the face. Part of this task is to just spend time on the mask, so that the face gets accustomed to it. This can take a few weeks. But another important part is to get the right mask–and the right size of the right mask–so that one does

not have to put up with problems like leaks and skin abrasions, however minor. Otherwise, one can easily end up fiddling with pieces of tape, daubs of salve, and other things to try to turn a faulty fit into a satisfying fit.

I initially tried a few masks (and nasal pillows) from various makers, and none fit or felt quite right until I obtained a Sullivan “bubble mask,” which I have used ever since. Indeed, I’ve been using the very same mask for two years now–it is still in pretty good shape despite the claim that most masks deteriorate after about six months. Besides, a replacement I once ordered turned out to reflect a design change in the opening that made it fit less well than my original mask, so I’ve kept using it. I’m not necessarily recommending this mask for others; I’m just saying it has been the right one for me. Other people may, and do, prefer other masks (and nasal pillows). Indeed, my impression is that all the masks (and pillows) I have tried are good; which one is right for a person depends on that person, particularly on the shape of his or her face.

Fortunately, in my case, my doctor initially recommended that the vendor provide several different masks for me to work with. I gather this is not a standard practice, but I think it should be. Perhaps a “beginners package” of several different masks should be available (at a beginner’s price)? How does an industry go about considering such a proposal?

One early weirdness of the mask experience was a sensation that the air inside it, after exhalation, was not real fresh. It seemed a bit close, a bit stifling–I even wondered whether there was a bit too much CO2 in it. I was reassured that this was not the case, and that the sensation was common for first-timers. What I did to relieve it was to open one of the tiny ports I found on the mask, a port that is evidently for inserting an oxygen tube if needed, but is otherwise supposed to be kept closed. Opening it provided a nice sensation of fresh air circulation, which gave me some relief. A few weeks later, once I got quite used to the mask, I found no reason to continue keeping the port open and closed it back up. Meanwhile, I was told I shouldn’t have done this, because it has the effect of reducing the air inflow pressure. But I couldn’t feel much difference in the pressure–nothing I could not compensate for by slightly increasing the IPAP setting–and I preferred the temporary relief. A bit of relief here and there made it easier to cope, and to focus on coping, with other trying aspects of the mask experience.

A couple of side points: I encountered a tendency in some therapists to fit me with mask sizes that were a bit small, whereas in my view a bit large may be preferable. (However, other people report a tendency to be fit with masks that are a bit too large.) Meanwhile, I also encountered remarks that I would surely have to shave off my mustache for a mask to fit well. But my mustache never proved a source of leaks. I have an explanation that some readers may find relevant. If the mustache hairs are fairly thick (but not bushed out) and longish (down to the top of the upper lip), the mask may press down on the hairs lengthwise and not lose a seal. But if the hairs are trimmed short, then the mask may ride on the stubby tips of the hairs and then lose a seal (while creating an odd tickling in the mustache).

A couple more side points, of a more technical. improvisational nature: I was typically instructed to connect the rubbery hose from the BiPAP directly to the mask intake. But this was not easy for me to do, often resulted in my ending up with a twist in the hose once I lay down, and just made life a little more complicated when I wanted to get up in the night and briefly detach then re-attach the hose without taking the mask off. In time, I found a simple solution–I got a plastic adapter (or connector) that mated to the mask intake, shoved it into the end of the hose, stuck a small dot on the adapter so I could feel with my finger the proper alignment, and never had a problem after that with attaching and detaching the hose and the mask. Maybe now it is standard practice for therapists and vendors to anticipate this issue; but if it isn’t, patients should be aware of ways to deal with it. Meanwhile, over time the side walls of my mask started to sag and distort, such that the mask would lose its seal under pressure. So far, I’ve been able to correct for this by wrapping wide, strong rubber bands around the side walls.

I’ve added these last points here because they relate to maintaining a good fit in the mask. But they are side points, and the reader should keep in mind that my main point is to get over the hurdle of learning to live with the mask as step one. A related overall point is to expect to have to be a bit improvisational at times to make the mask fit and work comfortably.

Step Two: Learn To Fall Asleep

The second step is to fall asleep on the mask. This was no small step for me. I couldn’t do it for more than a few minutes (seconds?) at a time in my first effort. The breakthrough occurred months later in the second effort. Part of this step was, again, just sticking with the process. But it was also a matter of getting the settings right on the machine I use, a Respironics BiPAP S/T. While I had some good general guidance on the settings, I had to do the refinements on my own through a lot of trial-and-error to figure out what worked best for me.

Should I use the S/T or the T setting? I found the T setting worked best at first–partly because on the S/T setting every swallow or other movement would trigger an untimely, disorienting blast of air, but maybe also because I was accustomed to a timed setting with the cuirass.

Meanwhile, neither the directions that came with the machine nor the therapists told me about the %IPAP knob. Yet, it plays a crucial role in the T setting, by determining the length of time air is pushed into the mask during the inhalation cycle. It took me a while to discover this–and then to find the right setting for me (40-45%).

At the same time, I also had to realize that I should increase the IPAP setting from about 10, which was fine while I was awake (pulse oximeter readings showed so), to a bit more than 12, in order to compensate for the fact that my respiration gets shallower once I fall asleep.

Meanwhile, as I varied the IPAP setting, I was also having to experiment with the BPM setting. Yet, I generally kept returning to 20-21 BPM, which is about what I used with the cuirass. (Curiously, I got

exactly the number of breaths I set when the machine is in the T mode, but two breaths less per minute for the same setting when I switched to the S/T mode, perhaps due to something about the length of time it takes me to complete an inhalation.)

Gradually, as I got used to the mask and made small improvements in the machine settings, I started falling asleep for brief periods with less and less delay, both at night and for afternoon naps. Another threshold was being crossed–but it had taken several weeks, and I still was not staying asleep for long.

Step Three: Stay Asleep

The third step was to stay asleep–meaning much more than a few minutes at a time, say at least a couple hours. This took another couple weeks.

By now, I had a good mask, and the IPAP, %IPAP, and BPM settings were about right. And I was getting used to the fact that the machine ramps up the inhalation pressure very quickly, a bit too much for my comfort (at times I wished the machine had a knob that would allow me to soften the impact rate).

Meanwhile, I had been using an EPAP setting of 4, a sensible choice. One night, I dropped it to 3–and immediately had my first good night’s sleep. This experience, and earlier ones with the other knobs, lead me to conclude that a change of just one point on any setting may make a substantial difference, for better or worse.

Another change that helped during this third step was to shift from the T to the S/T setting. By now, I was adapting enough that I felt the T setting was not quite matching what my lungs wanted to do. More to the point, the S/T setting was feeling a bit better; I now had enough experience to know when to swallow so as not to trigger, or not to be disoriented if I did trigger, the inhalation cycle in the S/T setting. Again, this suggests that patients who are having difficulty adapting should try experimenting with the settings–and perhaps should expect that the settings that work best at first may not remain the best as the process of adaptation advances.

I gather that many doctors and therapists would prefer to determine the settings. My experience may imply that, in cases where a patient is having trouble adapting, the doctor(s) and therapists are essential as advisers and collaborators for helping to determine the best settings–the patient cannot do without them. But at the same time, the patient may have to take an active role in figuring things out, even if this means lonely trial-and-error experimentation by oneself–a point my own doctor agrees with.

RETROSPECT AND PROSPECT

Those three steps–getting used to the mask, being able to fall asleep, and then being able to remain asleep, against a background of getting the right mask and getting the machine settings right–pretty much describe the process of adaptation in my case. The process took many months during 1995, but today (May 1997) I consider myself adjusted to, and thankful for, the BiPAP+mask system.

However, this does not mean I am a completely happy user. I continue to have a difficult time with what I call “parched mouth syndrome”–an extreme dryness in which my lips, gums, tongue, roof of my mouth, and front of my throat are all dried out and stuck together, and saliva flow has ceased. This is evidently not a problem that affects other mask users–and thus may not be of interest to most readers of this memo- -but I’d like to mention it anyway. Who knows, maybe the problem is more widespread than I realize, and maybe someone already has an explanation and a solution!

I’ve had this problem from the beginning. It seems to start right after I fall asleep and continue through the night (unless I lie awake so that saliva begins to flow anew). It helps explain why I constantly wake up, sip water from a bicyclist’s “Camel Bak” (neat device), and rarely get a good, long night’s sleep. Professionals and patients I have consulted ordinarily insist that I must be leaking air through my mouth– but I am convinced this is not the case. A humidifier can help with nose and throat dryness–but I’m not bothered by that, and the humidification I’ve tried has had no effect on my mouth dryness. I have had occasional nights when it has not been a problem, but have not been able to figure out why. I know what may make it worse (e.g., some foods and drinks, most medications, and higher IPAP and EPAP settings). But I cannot find a way to resolve the problem, though at times I have had hopes for a chin strap (which I use), an interior lip seal, hose positions that ease the mask’s pressure on the upper lip, herbal syrups, certain foods, etc. I once thought I’d found an answer–consuming lots of water–when the problem disappeared for five days during an effort to counter a minor cold; but the problem quickly returned. Meanwhile, no one I have talked to has been able to account for the possible physiology behind this problem. I have also learned that a few other mask users may be having the problem the bit, and that it does not seem to go away with time.

Sometimes this parched-mouth syndrome is bad enough to make me wish for a good cuirass. I never had a moment’s difficulty adapting to it, once I got a good fit. By comparison, moreover, I liked the fact the cuirass and its machine went to work immediately as soon as I put it on, to my great relaxation; the BiPAP takes a few moments, sometimes discomforting moments when I am very tired, to calibrate its settings and settle into a rhythym. I also preferred the way the cuirass hugs the chest, over the way the mask clutches the face. And while I’m at it, let me mention that I never had to worry about a stuffy nose with the cuirass–I could always just breathe through my mouth. I would hope, therefore, that the cuirass makes a comeback as an alternative technology, since I wish I had it available once in a while.

Even so, I know I get better ventilation from the BiPAP+mask system than I ever did from the cuirass. I also know that I am in better shape now than when I was on that increasingly ill-fitting cuirass. Furthermore, this new technology is a lot easier to travel with than was the old–it is far less bulky and heavy, and so much more reliable and sturdy that I don’t have to carry a backup machine. These are decisive pluses.

CODA: ADVICE AVAILABLE ON THE INTERNET

Joan, in keeping with the fact I am sending you this memo by email, I’ll conclude by pointing out that there are a lot of resources accessible on the Internet that can help first-time as well as experienced ventilator users. These resources include:

email lists for subscribers (e.g., the one on post-polio issues at St. Johns University available via listserv@maelstrom.stjohns.edu);

postings in Usenet news groups (e.g., alt.support.post-polio, though it is quite inactive by now, and alt.support.sleep-disorder, although it is more about CPAP than BiPAP issues);

World Wide Web pages (e.g., not only the ones maintained by persons, such as Tom Dempsey at http://www.eskimo.com/~dempt/polio.html), and by organizations, such as at

http://www.skally.net.net/ppsc/, but also the ones maintained by vendors and manufacturers, including for Respironics [http://www.respironics.com/ LincsPPN Web Adm.] and Sullivan equipment).

For a good guide, one should get a hold of the periodic posting by Ernie Wollering on PPS Internet resources (the latest one is available at his site, http://www.i-sites.net/ppsrl/reslist.html.

Few of the discussions and postings on the Internet focus on ventilator issues, and fewer still on BiPAP, mask, and related technologies. But what’s there can be quite useful, for everything from requesting an answer to a particular question, to finding ideas and observations that may prove useful for coping with

problems like leaks and abrasions and stuffy noses, to finding out about the latest developments in ventilator technology.

Finally, please feel free to distribute this memo as you see fit. If anyone wants a copy by email or has comments for me to consider, I can probably be reached at <ronfeldt@rand.org> or <ronfeldt@well.com>.

Experiences Adapting To BiPAP+Mask Technology Read More »

Chronic Fatigue A polio by another name

Chronic Fatigue: A polio by another name

Research into Post-Polio syndrome and chronic fatigue has-made the astounding discovery that the virus

that most often triggers CFS is closely related to the one that causes polio.

Jane Colby ME: The New Plague. Published by First and Best in Education Ltd., 24 Nene Valley Business Park, Oundle, Peterborough,

PE 8 4HL, UK. Excerpt published in What Doctor’s Don’t Tell You, Vol. 6, No. 9.

|| Sidebars ||

ENSV

Just a few decades ago, hospital wards were full of children in iron lungs as a result of polio. No longer. The horrific spectacle appeared to abate with the advent of vaccination, but nothing is without its price.

The public breathed a sigh of relief and even the medical profession believed, and still seems to believe, that the dreaded scourge of polio was at last being vanquished. We read predictions that it will be wiped out by the year 2000.

But a body of evidence is growing linking Chronic Fatigue Syndrome (CFS), also called myalgic encephalomyelitis (ME), to this terrible disease, largely caused by attempts to eradicate polio. An alternative polio seems to be upon us.

The proceedings of the first intemational scientific conference on the Post-Polio Syndrome in the US have been collated in the Annals of the New York Academy of Science. It includes 50 papers written by 118 contributors from a wide range of specialties, including clinical neurology.

In particular, papers by Dr Richard Bruno, assistant professor at the New Jersey Medical School’s department of physical medicine and rehabilitation and director of Post-Polio Rehabilitation and Research Se viuc di the Kessler Instiuie for Rehabilitation in New Jersey, and four other specialists compare Chronic Fatigue Syndrome and Post-Polio Syndrome (Dalakas, et al, ed. The Post Polio Syndrome Advances in the Pathogenesis Tregimeni, Annals, NY Academy, Sciences, 1995. 273. 1-409). Post-Polio is developing in those who had polio 25-30 years previously. Clinically, it is indistinguishable from CFS.

.

Other researchers demonstrate that CFS is just another form of polio, which has increased with the advent of polio vaccination. As one type of gut virus has been eradicated, so other forms have had the space to proliferate. Up to one in every 500 Americans may have CFS, according to the Centers for Disease Controi.

To understand the link one needs to understand the microbiological habits of both polio and other enterovirus disease-that is, gut bugs.

A historical accident has led to various names being given to viruses, all of which share physical, chemical and epidemiological characteristics of what we consider the classic polio virus, which science refers to as polio viruses 1, 2, and 3 (Dowsett: Journal of Hospital Infection, 1988:11:103-15). In 1948, a polio-like illness in New York state prompted scientists to culture the virus. But what grew looked to them at that time like a new virus.

ing

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They called it “Coxsackie’ after the small town up the Hudson River where it was found. And they called

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the disease “Atypical Polio” because its symptoms identified it as a kind of polio, despite the virus being apparently different.

This kind of polio, “Atypical Polio,’ has since been renamed, ‘Chronic Fatigue Syndrome,’ or ME. But it remains a kind of polio despite the change of name. and newer technology has shown up the generic similarities of the most frequent agent that causes it.

These techniques place Coxsackie, the virus most often implicated in CFS, in the polio family tree, along with so-called echo viruses. Coxsackie has been further divided into Coxsackie type A (with 24 viruses) and Coxsackie type B (six viruses ). There are 34 echo viruses. In total, there are at least 72 enteroviruses in all, with new ones still being discovered.

All this has been unnecessarily confusing and complicated, even for doctors. These days newly discovered enteroviruses are just given a new number, not a new name, since their inter-relationship is recognized.

1

3/

2

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4

Had the techniques been available that we now have at our disposal, all these viruses might simply have been called “Polio 1 through 72″

There are several angles from which to investigate the hypothesis that CFS is a type of polio. One is its clinical symptoms. Dr. Elizabeth Dowsett, consultant microbiologist of the Southeast Essex NHS Trust who is in the foreii ont of British CFS research, explains that true CFS (as opposed to fatigue states with other ctiologies) suikes One clinically as being polio-like, and it has often been diagnosed as a Treases

butin.” w pratitud e works, pain down their spines and üle sysicmically ill,” she

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Se feeis thai il lias been an unfortunate mistake io tuin to the label “Chronio Fatigue” because true CFS is a neurological condition tai usually originates with a gut virus infection like Coxsackie.

Apart from clinical examination, in some cases of CFS you can actually demonstrate the presence of gut virus infection in the patient. The requirement to put off diagnosing CFS for six months after the patient falls ill has unwittingly militated against this. If tests are not done very rapidly after the onset of infection, it is too late to identify the virus.

–

des

A blood screening test called the IGM, which shows up recent infection, can be positive up to three months after infection in adults. As the enteroviruses are characterized by their relapsing nature (on average, three-week intervals), it could also be identified on relapse.

Apart from modern techniques, a research procedure called the acid elution test can identify your antibody from a circulating virus and can be applied to viruses multiplying in the bowel Years ago it was difficult to diagnose polio, and it was this very test which was used.

A third way to compare CFS with polio is by looking at studies of actual outbreaks which identified the viruses causing it. Here the evidence is particularly striking.

A recent paper by Richard T. Johnson, at the Department of Neurology, John Hopkins University School of Medicine, in Baltimore, published in the 1995 Annals of the New York Academy of Sciences mentioned above, sets out evidence that has been available since the 1950s. “In the spring of 1957,” he wrote, “we investigated an epidemic of poliomyelitis in Hawaii…of the 39 cases of nonparalytic poliomyelitis, only four were related to type I poliovirus. There were 16 cases of echovirus 9, sevei cases of Coxsackie, and four to five other enteroviruses.”

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UFS/ME: l’olio by another name

The very enteroviruses known to be implicated in CFS were here identified as causing “non-paralytic polio.” CFS has often been diagnpsed as “non-paralytic polio.” And even more interestingly, two of the 38 cases of paralytic disease were not caused by the polio virus at all, but by one of the Coxsackie viruses

So we know that enteroviruses in general can cause varying forms of the disease we call polio.

Other parallels between CFS and polio concern neurological damage,

In the November 1991 edition of Orthopedics, Dr. Bruno says that “all the evidence available shows conclusively that every case of poliomyelitis, human or experimental, exhibits lesions of the brain. In the

e cases as well as paralytic cases,” CFS has

Cho would expect there to be difcrences in the diseases caused by different virusos, but if the viruses are all of the Saino family and so the sand i uvepios sites in the body, and would also capeet there to be simulanities. This is jusi whai wo fiü.

Dr. Bruno says: “Despite the differences between poliomyelitis and CFS, an association with the polio virus was suggested by the fact that, of the more than onc duzun CFS vuibreaks before the introduction of the Salk vaccine, mine occurred during or imnieliaiely aflu vuibreaks of polio, and several involved hospital siasi wito care for polio patients” (Annals, NY Academy of Sciences, 1995).

There is also the case of a woman who fell ill with classical CFS while nursing a lady friend with acute paralytic polio (Hyde et al: Epidemiological Aspects of ME/CFS, Nightingale Research Foundation, Ottowa, Canada, 1994),

But if CFS is a type of polio, why doesn’t everyone exposed to the relevant viruses develop ME just as they did polio?

It has been forgotten that, as Dr. Thomas Stuttaford of The London Times explains, “.. only a small number of those infected with the polio virus became paralyzed, about 90 percent didn’t even realize that they had annthing more threatening than a cold.” With polio and CFS, the state of your immune system governs whether you will be susceptible.

By altering the population’s resistance to a particular organism, we alter the balance of infectious agents in the environment. The circulation of wild polio viruses 1-3 has declined through vaccination However, this has left us open to the other 69 polio-related viruses, which have thrived (see How viruses competo with each other).

It is therefore not surprising that since the late 1950s the incidence of CFS has risen, and experts predict that it will be the neurological disease of the 21st century. By suppressing the spread of three enteroviruses we have opened the door to the rest.

The argument about whether enterovirus infection persists over many years is still raging. In her 1995 review of the proceedings of the 1994 Post-Polio Conference, Dr. Dowsett draws attention to new evidence of persistent enterovirus infection in the central nervous system of Post-Polio patients.

She concluded: “Three separate groups of Virologists from the US, UK and France have found fragments of enteroviral RNA in the spinal cord, cerebrospinal fluid and blood of some patients with Post-Polio

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syndrome. The fragments are identified as polio virus by some and as Coxsackie virus by others,” she

said.

It is thought that the emergence of late-onset Post-Polio fatigue may result from age-related changes in brain cells that survived the original polio infection (Bruno, Annals, NY Academy of Sciences, 1995).

But it can be observed through case histories that just as we see Post-Polio Syndrome 30 years after initial infection, so we are seeing “Post-CFS” as well. The Nightingale Research Foundation in Ottawa proposes that in fact they are one and the same condition-others believe they may be variations of each other

What has arisen is “two new diseases with different names, with different degrees of acceptance and exactly the same set of symptoms at exactly the same time. It is unrealistic to believe that we are dealing with two different disease processes and two different causes,” the researchers concluded.

A paper investigating the epidemiological aspects of CFS has revealed further convincing parallels between the behavior of this disease and polio. It describes the onset of CFS as mainly being ushered in by a “minor illness” which has “recently been described as a flu-like illness…”. The researchers continue:

in reality it is identical to and has all of the features and variability of the ‘minor illness’ of missed or abortive poliomyelitis.”

In comparisons with epidemic polio going back to 1916, they note that “we see the same two typical features” in a typical year with an epidemic or CFS; “a decreasing incidence from January to reach a Summer low, then … the strong late summer increased incidence, peaking in the August to October period.” (Hyde ei al Nightingale Research Foundation, Ottowa, 1994).

CFS, or Atypical Polio, is such a serious and devastatingly debilitating multisystem malfunction leading to such profound weakness in some children that they are unable to speak and have to be tube-led. but they can dreame, enteroviruses have an affimiy for certain tissues and many do not attack the respiratory center, causing paralysis, as in polo itseli,

.

1

Children with polio were given intensive physiotherapy and exercised. Now. up to a half of survivors have gone on to develop Post-Polio. It has been predicted that this will eventually rise to 100 percent.

What are we doing to our teenage CFS sufferers when we force them back to school, deny home tutoring and tell them to exercise as a form of therapy?

The treatment of choice for those with Post-Polio is “adequate rest, energy conservation, the pacing of activities, and reducing physical and emotional stress” (Bruno: Annals NY Academy of Sciences, 1995).

What on earth will happen in 30 years’ time to children now getting CFS in a climate where they are disbelieved and told to push themselves througii the pain barrier? The condition Post-CHS, which we are already seeing in aduits, may well await them with a vengeance

We have to ask ourselves the disturbing question: if polio victims had been able to breathe, would we

ever have taken that disease seriously?

Thanks to The Carousel Network for reprinting this information.

Melissa Kaplan 1997

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Article Sidebars Return to CFIDS page melissk@sonic.net

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Physiotherapy Management

PHYSIOTHERAPY MANAGEMENT OF THE LATE EFFECTS OF POLIO

Christine Uriadka, Physiotherapist

Post Polio Clinic, West Park Hospital, Toronto, Ontario.

Revised transcript of presentation given by the author

in Winnipeg, Canada April, 1997

Lincolnshire Post-Polio Library copy by kind permission of the author.

Discussion Outline

I am a physiotherapist currently working in the Post-Polio Clinic at West Park Hospital, a rehabilitation and specialized continuing care hospital in Toronto, Ontario, Canada. In my discussion, I will touch upon several broad areas related to post-polio issues. I’ll begin by discussing why it is essential for clinicians to be aware of how to manage the late effects of polio. I will go on to provide a general profile of the physical symptoms and functional difficulties that arise in the post-polio population, and talk about how these new concerns develop. This description would not be complete without addressing the emotional coping issues and lifestyle adaptations that accompany the physical changes. I would then like to discuss a number of symptom management approaches, from the physiotherapy perspective. After this, I will provide an overview of the structure of the Post-Polio Clinic at West Park Hospital.

Why do Clinicians Need to Know about the Late Effects of Polio?

I would like to begin by making some comments about why it is important for physicians, physiotherapists, and other clinicians in the rehabilitation disciplines, to have a general understanding of the late effects of polio and basic management principles. The demand to assist individuals across the country in managing polio-related problems is very real. It is estimated that there are 66,000 polio survivors in Canada, approximately 2/3 of who have or will develop the late effects of polio. There is also a need to provide care for those individuals immigrating to Canada from developing countries who have previously contracted polio.

The post-polio Clinic has frequently encountered the misperception that the post-polio population is dying out, and that the need to be educated about caring for this clientele will soon be obsolete. This assumption, however, is proving to be inaccurate. Children are continuing to contract polio at this time, with active outbreaks currently being reported in India and Albania. In 1996, over 80,000 new cases of polio were reported worldwide. Although the World Health Organization has been striving towards worldwide eradication of polio by the year 2000, progress towards reaching this goal is hindered by factors such as

the cost of transporting and refrigerating vaccine.

Throughout our contact with polio survivors in the Post-Polio Clinic, it is our understanding that this large number of individuals facing the late effects of polio have found it difficult to access health care practitioners who have a thorough understanding of their particular concerns, or of the impact of the late effects of polio on their medical management. Individuals whose mobility is severely compromised frequently need to travel hours to be assessed or treated by clinicians with any degree of expertise in the area of polio-related symptoms. This travel can often contribute to their pain and fatigue, particularly during the winter months, when their sensitivity to cold temperatures further restricts their mobility.

Physicians and therapists working with various client populations and in many different rehabilitation environments are likely to come into contact with polio survivors more regularly than one might realize. To illustrate this point, I would like to highlight that in the Post-Polio Clinic, we commonly encounter individuals who have not only had polio, but also have one or more additional coexisting conditions, such as osteoarthritis, fibromyalgia, injuries incurred in motor vehicle accidents, cardiovascular disease, respiratory conditions, even head injuries and strokes. This shows how essential it is for all clinicians, regardless of their area of specialization, to be aware of general management guidelines for individuals who have had polio. The impact of a person’s previous polio may affect the approach that should be used even when treating that individual for an unrelated injury or illness. Whether you know it or not, the client you, as the therapist, are rehabilitating after abdominal surgery or treating for a whiplash injury or carpal tunnel syndrome, may have contracted polio earlier in their life. Some individuals, when providing their medical history to a physician or therapist, may not even consider it relevant to mention the fact that they were previously affected by polio. Therefore, it is helpful for any therapist to be able to generally recognize when an individual may be experiencing the late effects of polio, so that their symptoms may be managed accordingly.

The Late Effects of Polio

Now, I would like to give a general overview of the symptoms that may be experienced by polio survivors. The concerns that are frequently encountered as the late effects of polio may include profound fatigue, pain, increasing weakness over areas of the body that may or may not have been considered to be affected by the initial polio, diminished endurance, muscle cramping, and cold intolerance. Polio survivors may also present with respiratory impairment and/or swallowing difficulties.

Most of the late effects of polio are related to biomechanical stresses secondary to muscle imbalance and postural deformity, as well as excessive demands on surviving motor units, leading to premature degeneration of these motor units. The onset of what is generally termed “post-polio syndrome” generally occurs at 30-35 years after the initial polio. However, the development of symptoms is not limited to this time frame, and can frequently be compounded by the normal effects of aging, as well as coexisting conditions such as the ones that I have previously mentioned.

Development of Post-Polio Symptoms

I would like to take some time now to describe the process of events that generally occurs, perpetuating the development of post-polio symptoms. After recovery from the acute stages of polio, depending on the extent of neurological recovery, a person may be left with residual muscle weakness or deformity of the trunk or limb alignment. For many years, he or she compensates for this weakness or deformity in their activities by changing their patterns of movement, relying on greater use of other limbs or accessory muscles, or by changing their posture. These changes not only require a higher energy expenditure, but

they also place excessive metabolic demands on the motor units relied upon most heavily. At some point, the muscles involved become unable to cope with the additional load. These muscles may already have been compromised, but were affected to such a minimal degree by the initial polio, that no weakness had been previously detected. Unfortunately, the muscles finally succumb to the strain of chronic overuse. The resulting new weakness that arises as a late effect of polio may cause the previous compensations to become ineffective. As I’ve mentioned, this new weakness can be noted in previously affected muscles, as well as in muscle groups that were previously never considered to be impacted by the initial polio. As a result, the individual suddenly begins to encounter difficulties with daily tasks that previously did not present a problem.

A spiraling sequence of events is initiated when new muscle weakness develops. As muscles weaken, it gets harder for a person to keep up with their usual daily responsibilities. Because more energy is needed to perform ones normal activities, fatigue becomes a problem. The muscles tire more easily, causing muscle cramping and pain in the limbs or areas of the body that are required to bear excessive demands, secondary to chronic overuse. Furthermore, without the needed stability and protection that is normally provided to joints by muscle function, excessive mechanical stresses are placed on vulnerable joints by compensatory movements and postural deformities. As a result of the wear and tear, a person is at risk of developing degenerative changes in their joints. The corresponding pain sets up an all-too-familiar process of events.

As an individual experiences severe pain or discomfort, they are likely to decrease their level of activity. Due to this lack of activity, the person becomes deconditioned, which is accompanied by a further increase in muscle weakness. With restriction of a person’s mobility, some muscles may eventually suffer from disuse. Thus, the cycle of events begins all over again. As the muscles continue to weaken, the muscle imbalances that are created lead to a worsening of the individual’s pain. The process of decline continues. Later in my discussion, I will describe how the physiotherapist can be involved in interrupting the sequence of events that I have just outlined.

Functional Changes

Now, I would like to shift my focus back to elaborating on some of the functional changes that persons suffering from the late effects of polio may experience. A polio survivor that you may encounter could indicate that their general mobility has markedly deteriorated, with buckling of their knee, catching on their foot, and more frequent falling. Therefore, they may have greater difficulty managing stairs or using

public transit. Aside from the localized muscle fatigue that I described earlier, your patient could also suffer from severe generalized fatigue which is disproportionate to the activities involved. This fatigue can be both physical and cognitive, manifesting as diminished activity tolerance, memory impairment, word finding and concentration difficulties. Furthermore, it is quite common for individuals to indicate sleep disturbance, which could be related to a variety to factors, including leg restlessness or twitching, pain, anxiety, and sleep apnea. Such sleeping difficulties would undoubtedly contribute to their fatigue. An additional issue that quite often is a concern among the post-polio population is weight management. Certainly, any person whose mobility is limited and who has difficulty participating in regular conditioning activities is at risk of weight gain. As you know, any excess weight places additional mechanical stress on the spine and lower limbs and adds to the energy required for daily activities, thus also exacerbating a person’s fatigue.

Impact on Accustomed Roles

The changes that I have outlined may affect the individual’s ability to uphold their accustomed

responsibilities at work, as well as their household duties. The capacity to perform basic activities of daily living such as bathing and dressing independently could also be impacted. A person’s family roles and personal relationships may suffer as relatives and friends have difficulty appreciating why the individual no longer is able to participate in accustomed activities such as family outings and recreational events, leading to social isolation. It follows that a person could experience pressure to continue keeping up with their habitual roles and what is expected of them, both by others and from within, as well as guilt when they are no longer able to do so.

Coping with Lifestyle Modifications

As a result of new functional difficulties that arise, relating to the late effects of polio, a polio survivor is faced with making significant lifestyle changes. These lifestyle modifications often present a definite challenge to ones self-image. The coping approaches or patterns of emotional response that people adopt to manage their physical challenges vary, depending on the individual’s personality, their specific support network, and extent of residual disability. As they go through the process of making necessary adjustments, it is generally most essential to the polio survivor to maintain their sense of control and independence. The health care professional can assist by encouraging the individual to allow himself or herself permission to make changes, and guide the individual to reframe their expectations for success by focusing on innovative ways of achieving new goals.

Emotional Impact

It is equally important for the therapist to be aware of how previous polio may influence a person’s emotional response to treatment and therapeutic equipment that is recommended. Individuals who had polio were usually considered to be fighters or survivors. After initial polio onset, they were encouraged by therapists and family members to struggle and push through the limitations of their pain and fatigue towards recovery of their mobility. Some children experienced traumatic long-term hospitalization, separation from family, and sometimes painful medical procedures. The ability to manage without assistive devices such as crutches, braces or wheelchairs was seen as a measure of success. With a lot of hard work, many individuals experienced good recovery of their function or learned how to compensate with their stronger muscles to pursue an active lifestyle. After overcoming all these difficult obstacles, and expecting that their “polio” problems have long been overcome, it is a terrible shock when new symptoms begin to arise decades later. It is understandable that, at this time, a person might respond by pushing harder, rather than using moderation. The need to return to using assistive devices, and to make lifestyle modifications, can be perceived as a step backwards, instead of a means of enhancing ones freedom and independence. It can also perpetuate fear of future deterioration. Discussion of present needs for adaptive equipment can bring back difficult memories of heavy orthopedic shoes or awkward metal braces. Even though most people experienced supportive and compassionate treatment during their original rehabilitation, strong feelings of helplessness, fear, disappointment, or lack of trust may remain. Therefore, it is important for you, the health care provider, to understand that your client may well be confronting feelings related to their original polio experience as they interact with you.

Management of Post-Polio Symptoms

Now that I have outlined a general profile of a person experiencing the late effects of polio, I would like to go on to discuss some essential components of symptom management, primarily focusing on the role of the physiotherapist. Before I continue, I would like to make two comments. First of all, you will notice that many of the management strategies intermesh, and can be difficult to separate into mutually exclusive categories. For example, when a rollator walker is prescribed for a client to facilitate their ambulation, it is

also contributing the additional benefits of providing postural support, alleviating muscle fatigue, and minimizing mechanical stress on the joints, thus relieving pain. Secondly, I’d like to emphasize the point that there is also extensive overlap between the roles of the different disciplines. To illustrate this idea, let’s look at the example of a client who is having difficulty transferring in and out of their bathtub. The occupational therapist may be involved in prescribing the specific bathroom equipment needed to ensure a safe and efficient transfer. The physiotherapist may focus on providing exercises to strengthen particular muscles that are essential to the activity of transferring. The social worker may play a role in helping the client develop effective coping skills, so that they can adjust to and accept the changes that they are facing, as well as directing the client in locating funding sources for the equipment that they need. In this manner, the roles of the different health care clinicians very often complement and facilitate each other.

At this point, I will be describing six symptom management approaches for the post-polio population that particularly relate to physiotherapy. They include: exercise prescription, energy conservation, correction of postural alignment, prescription of assistive devices such as braces and ambulation aids, pain management and client education.

Exercise Guidelines for the Post-Polio Population

Let’s talk about exercise guidelines first. When prescribing exercise to an individual with a history of polio, the physiotherapist needs to consider the client’s description of their fatigue, pain, postural deformities, muscle imbalances, and previous surgical procedures. The therapist is challenged to find activities that help to prevent deconditioning and atrophy of the relatively unaffected muscles that are underused, while at the same time avoiding the risk of placing additional demands on weaker muscles that are already overworked beyond their capacity. As I prescribe exercise for the post-polio population, I generally have two goals in mind. The first goal is to improve the individual’s cardiovascular conditioning. This serves to increase the overall efficiency of muscle function and oxygen transport. As the energy cost of movement is decreased, a person is left with less fatigue, and a greater energy reserve to apply towards other activities. The second goal of exercise prescription is to maximize the strength and endurance of specific muscles that are underused. As these muscles are strengthened, they can help to achieve appropriate compensations in movement and posture. As a result, harmful compensations that lead to joint degeneration and pain are avoided.

Prescription of Cardiovascular Exercise

Recent literature published by researchers such as Owen and by Dean and Ross, indicates that a modified, low-intensity regime of aerobic conditioning exercise within the individual’s fatigue tolerance is beneficial in the post-polio population for maintaining or improving overall endurance and functional work capacity.

Dean and Ross feel that by optimizing both cardiovascular fitness and the biomechanical efficiency of movement, aerobic training is effective for post-polio clients in reducing muscle fatigue and joint stresses. Rather than being singled out, use of the affected muscles is integrated into a more general whole-body activity. Therefore, the affected muscles are subjected to a lesser degree of chronic overuse. For most of the post-polio clients that I see, I normally recommend low-resistance activities that are least likely to fatigue the compromised muscles. They include walking or bicycling on a level surface, pedaling a stationary bicycle or arm ergometer set on a minimal tension, swimming, and performing gentle conditioning pool exercises. Regardless of the type of cardiovascular activity that is prescribed, I always emphasize to a client who has had polio the importance of pacing. Because many post-polio individuals have typically conditioned themselves to disregard any discomfort and to push through it, a lot of time is spent educating the client about how to recognize muscle fatigue, and how to listen to their bodies. Clients

have to be taught to be aware of indications of fatigue, such as muscle cramping or twitching, burning pain, diminished range of movement, and shaking or heaviness of the limb. As soon as they begin to experience any of these symptoms, I direct the person to stop and rest for several minutes until the discomfort subsides, rather than continuing to force themselves through the exercise. Once the muscle gets tired, it is generally not advantageous to continue the exercise, as the individual starts to do use compensatory movements and do the exercise incorrectly, causing it to be more detrimental than beneficial. The general rule of thumb that I give to many of my clients is that if the discomfort persists after resting for 5 minutes, they should end their exercise session for the day. If however, any indications of fatigue are alleviated by several minutes of resting, they can resume their activity, continuing as long as the exercise does not exacerbate any pain or muscle cramping. In most situations, I encourage individuals to adhere to the generally recommended parameters for cardiovascular conditioning: 20-30 minutes of exercise, three times a week. If the client has not previously been exercising regularly, it is advisable for them to begin with a shorter duration of 5-10 minutes, and to gradually progress the duration within their fatigue tolerance. Spacing is equally essential in avoiding excessive overuse of the affected muscles. By scheduling the activity on alternate days, the individual allows their body ample rest time between

exercise sessions.

Please note that the exercise guidelines previously outlined represent a general approach. However, each person’s exercise routine must be tailored to the specific individual, according to their fatigue level, activity tolerance and to the extent and distribution of muscle weakness. Some people encountering the late effects of polio experience such debilitating fatigue, that the effort involved in exercising renders a conditioning exercise program unfeasible and counterproductive. The exercise program for any polio survivor should be prescribed to meet their specific needs. It is essential that the type, intensity, frequency and duration of exercise activity be modified appropriately to correspond with the individual’s level of physical function. It is recommended that the exercise program be re-evaluated on a regular basis.

Benefits of Aquatic Exercise

I would like to take a moment now to talk specifically about aquatic exercises. The benefits of pool exercises are many. Exercising in water gives one the opportunity to exercise in positions that allow any particular movement to be either assisted, supported, or resisted by the buoyancy of water. Depending on the level of immersion, a person standing in water is required to support only a portion of their total weight. This reduction of weight bearing dramatically decreases the mechanical stress placed on the lower limb joints. As well, the warmth of the water helps to promote improved circulation and muscle relaxation. For these reasons, many post-polio clients, especially those who are minimally ambulatory, find that they are able to enjoy activities in the water that they are not able to perform on land. I have encountered a number of people who have never considered exercising in a pool because they don’t swim. There is a wide variety of pool activities that can be suggested to these clients that do not involve swimming, such as aquafit exercises, walking or marching in the water, kicking or pedaling the legs.

Considerations regarding Aquatic Exercise

Before referring a client to a community aquatic exercise program, there are several factors that the therapist needs to consider. Because of their cold intolerance, post-polio individuals find the temperature of many community pools uncomfortably cold. They may need to be referred to a therapeutic pool where the water temperature is kept within the range of 90-95 degrees Fahrenheit. Accessibility of the pool is also a factor that needs to be considered. To this end, it helps to investigate the distance from the parking lot to the change room, and between the change room and the pool. Does the pool provide a wheelchair that individuals can use to get to the pool? Can the client wear their brace to the pool deck? Are there

stairs in the way? Does the pool have stairs or a lift for entering the water? Is any assistance available at the poolside? Are any specific hours or programs offered for individuals with special needs? All of these issues can determine whether a person would be able to and interested in participating in a pool exercise program.

Before referring a client to a hydrotherapy or aquafit program, the physiotherapist must be aware of any aspects of the individual’s medical history that may be considered a contraindication or precaution to pool exercise. Such conditions include unstable cardiac status, hypertension, open skin lesions, sensitivity to chlorine, seizures, and incontinence. The instructor of a community pool exercise class would likely have limited knowledge about the late effects of polio and the exercise approach that is appropriate for this population. Therefore, it is important for the referring therapist to act as an information resource for the instructor, perhaps even sending along some general literature or handout materials about the late effects of polio.

Prescription of Strengthening Exercises

Now that we have talked about aerobic conditioning, let’s go on to discuss the use of resistive strengthening exercises for specific muscles. At present, prescribing aggressive strengthening exercises for the post-polio population poses some unanswered questions. It has indeed been demonstrated that a progressive, high-intensity strengthening regime for specific muscles is effective in maintaining or improving functional strength and endurance, as long as they do not increase the individual’s level of discomfort. However, these exercises must be approached with caution. Activities that are isolated to a particular affected muscle may bring about the detrimental effects of chronic overuse, particularly if training is done against maximal resistance. Such constant excessive demands placed on partially denervated muscles may contribute to fatigue and promote overuse atrophy. I have personally maintained a relatively conservative approach to prescribing strengthening exercise for my post-polio clients, particularly as they go on to do the exercises without regular supervision of a physiotherapist. Generally, I limit the exercises to isometric and non-resisted activities, and I am careful to provide the client with the necessary education to enable them to safely modify their program. When performing more high-intensity resisted exercises, I feel that it is advisable for the individual to be monitored regularly by a physiotherapist.

Prescription of Stretching Exercises

The last component of exercise prescription that I would like to touch upon is stretching. Because of their muscle imbalances and postural deformities, it is fairly common for a post-polio client to develop tightness and shortening of certain trunk and lower extremity muscles, particularly if they are non ambulatory. This muscle shortening further contributes to pain, joint instability, and inefficiency of movement. In the post-polio population, hip and knee flexion contractures, as well as ankle plantarflexion deformity, are the most common to develop. It is usually appropriate to prescribe specific stretches for localized joint contractures and muscle tightness. However, the therapist must be aware that in some situations a restriction in range may be functionally useful in assisting mobility. For example, I have encountered a large number of clients whose ankle has been fused to minimize footdrop and facilitate their ambulation. In such cases, it would obviously not be advisable to try to improve the range of motion of the joint. The approach to stretching for post-polio individuals needs to be gentle and slow. Because they tend to be so prone to cramping if the muscle is overstretched, I direct my clients to stretch within the range where only a slight pulling is felt.

Energy Conservation

The next area of management that I would like to briefly speak about is energy conservation. In our Post Polio Clinic, it is primarily within the occupational therapist’s role to instruct a client in appropriate energy conservation and pacing strategies. However, because energy conservation approaches are such an integral part of general lifestyle adjustments that are recommended for this population, and because pacing is always incorporated into the client’s exercise program and pain control strategies, energy conservation is one area that truly overlaps across all of the disciplines. I’ll just review some sample energy conservation techniques that are frequently recommended. One aspect of energy conservation involves scheduling. This includes such suggestions as planning two 20-minute rest breaks during the day before the onset of fatigue, spreading activities out over the course of the day or the week, breaking up strenuous activities into smaller components, and alternating between light and heavy tasks. Once a person is tired, it takes much longer to build up their energy reserve. Therefore, they need to take a break before their energy supplies are depleted and they are running on empty. Next, it is important for the individual to modify activities that are particularly fatiguing. For example, strenuous activities such as vacuuming or shoveling

snow can be delegated to others. Arrangements can be made to have groceries delivered. Tasks that involve standing or walking should be limited in duration, and minimizing any unnecessary use of stairs is encouraged. Proper positioning is also essential to energy conservation. A person should sit in a supportive chair with their arms supported to perform activities whenever possible, maintaining correct posture. Arranging the workspace so that the working surface is at a comfortable height can be very helpful. Assistive devices also go a long way in making activities less tiring. Such adaptive aids can include items such as tap turners, jar openers, stocking aids, barbecue tongs for removing clothes from the dryer, and a trolley for transporting heavy loads. Perhaps the most difficult aspect of energy conservation can be setting priorities. It is not always easy to weed out nonessential activities and eliminate them to save energy for activities that are more important to ones self-image, and this process can involve making some difficult choices. I also would like to include the comment that, for people who are working, it is usually more challenging to follow energy conservation principles on the job. People don’t have as much control over their environment, the pace that is expected, and scheduling of work hours and rest breaks at their place of employment. Finding energy conservation strategies that can be implemented even at work can require a lot of resourcefulness, open-mindedness, and imagination.

Postural Correction

I’ll go on now to speak about the third area of symptom management for post-polio individuals: that of postural correction. Asymmetrical postural alignment can most frequently be attributed to muscle imbalance. As well as often being implicated in the etiology of pain, postural deformities can dramatically impact on an individual’s energy efficiency during various activities. Again, this is where postural exercises can play an important role. With respect to alignment of the trunk, the most common remarkable finding encountered in the post-polio population is spinal scoliosis. The scoliosis that is noted may be a true fixed scoliosis that has developed due to weakness of the trunk and paraspinal muscles over one side of the body. More frequently, it is an apparent scoliosis, associated with unequal height of the two halves of the pelvis, that is secondary to a leg length discrepancy. This type of scoliosis is correctable by placing a lift of the appropriate height under the client’s shorter leg to compensate for the leg length discrepancy. Post-polio individuals often also present with upper thoracic kyphosis and forward head posture, with a compensatory hyperlordotic curve. With regards to the lower extremities, some of the postural malalignments that are frequently encountered include:

genu valgus and recurvatum deformities

pelvic obliquity

uneven weight distribution between the limbs, and also through the soles of the feet calcaneal valgus or varus

Strategies to Correct Postural Alignment

I’ve already referred to some examples of interventions related to the posture of a post-polio client, that are aimed at relieving muscle tension and preventing unnecessary joint stresses. As I have mentioned, the strategies that are recommended by the physiotherapist should include toning and/or stretching exercises for the paraspinal and abdominal muscles, as well as postural exercises for the neck and shoulder girdle region. The exercises should always be accompanied by education regarding general back protection and the use of correct body mechanics. Some clients may even benefit from being referred to an outpatient facility for a comprehensive back care program. Appropriate resting positions should be suggested for persons who have back pain related to poor posture. Adaptive aids such as contoured therapeutic pillows, neck collars, and abdominal belts can be considered, to provide adequate postural support. In addition, the use of orthotics, shoe lifts, or bracing to promote more symmetrical postural alignment is an option that is sometimes suggested as appropriate.

While we’re on the topic of posture, I just want to again touch upon the issue of weight management. It is undeniable that excess weight and abdominal obesity do contribute to poor posture. Once more, the benefits of aerobic exercise in promoting a higher metabolic rate and burning off calories come into play. Despite the client’s residual muscle weakness or functional impairments, the therapist can usually work together with the client to find some forms of cardiovascular conditioning activities that are feasible and enjoyable for them to do, which may facilitate weight loss. To this end, some clients benefit from being referred to a dietitian for nutritional counseling.

Adaptive Equipment: Benefits of Orthotic Prescription

The fourth management strategy that I would like to address is that of adaptive equipment, specifically bracing and the use of ambulation aids. In the post-polio population, an orthosis can be used during ambulation as a means of facilitating the client’s mobility and reducing the effort involved in walking by compensating for muscle weakness. An orthosis may be recommended for the purposes of ensuring correct position and stability of the joint, providing more equal weight distribution, and supporting the weaker leg, thereby indirectly also alleviating the load on the stronger leg.

Factors Affecting Bracing Requirements

The physiotherapist may be called upon to provide input in establishing the client’s need for a brace. Whether an individual requires an ankle-foot orthosis or a knee-ankle-foot orthosis is determined by several factors, such as the degree and location of muscle weakness, gait deviations, extent of joint instability and alignment deformities, and their daily functional requirements. In general, clients that demonstrate extensive instability of the knee joint and an overall lower extremity strength less than grade 2 tend to require a KAFO. However, the benefits and disadvantages related to bracing need to be weighed in each specific situation. When considering prescription of an orthosis, one must take into account the weight of the brace, the risk of aggravating lower back strain, whether the person has sufficient muscular function at the level of the hip to be able to maneuver the braced leg, and whether the client would have difficulty managing stairs while wearing a brace. Having said that, I also want to draw your attention to the fact that braces are now being made of stronger compounds, allowing them to provide the necessary support while being less bulky and conspicuous. Many clients are pleasantly surprised by how light and uncumbersome their orthosis is, compared to their earlier experiences. Certainly, becoming accustomed to walking with a brace requires an adjustment period, during which modifications may need to be made to the brace. This process of getting used to the orthosis and learning to use it should be approached gradually. The success of bracing is greatly influenced by the client’s receptiveness to the orthosis, and

willingness to endure the adjustment period.

Purposes of Ambulation Aid

The main objectives of prescribing a walking aid in the post-polio population are essentially the same as the purposes of bracing. An ambulation aid is used to ensure more stable balance, promote better posture, minimize fatigue and energy required for walking, and to alleviate the load on the joints. When considering the appropriateness of a walking aid for a post-polio client, the physiotherapist must take into account their general status, the strength and functioning of their upper and lower limbs, their balance, and any coexisting orthopaedic problems. The client’s environment, access to transportation, and available means of transporting the walking aid or mobility device also needs to be established.

Considerations for Ambulation Aid Prescription

One of the biggest setbacks that is encountered when prescribing an ambulation aid is the risk of aggravating any discomfort or problems in the upper extremities. Use of any walking aids can pose a difficulty for persons with polio involvement of one or both arms. Even when the arms were not affected by the initial polio, long-term use of the arms for weight bearing can perpetuate osteoarthritis in the upper limb joints or carpal tunnel syndrome. These problems can be minimized if correct height of the device is ensured, and if the client is trained to use the device properly. You would be surprised at the number of clients I see who walk in with a cane that is much too high, or who use their cane in the inappropriate hand. When either a walking aid or a brace are prescribed for a client, it is essential that appropriate follow-up by the physiotherapist be available for any gait reeducation that may be required. Such follow up gives the therapist the opportunity to ensure that the device fits correctly and that the client is able to walk safely with the device on a level surface, outdoors, and on stairs.

Pain Management Strategies

I’ll go on now to comment on the fifth area of intervention : pain management. I find that it is impossible to separate the topic of pain control from the other aspects of the client’s symptom management. I’ve already talked about how bracing, walking aids, and postural supports can have the effect of minimizing stress on the joints and alleviating overuse of the muscles. In many cases, pain can be successfully managed by postural correction, joint protection techniques, and establishment of the right balance between appropriate exercise and rest. I would venture to say that for the greatest number of clients, the most essential component of pain management is learning how to conserve their energy, and finding the combination of activity and pacing that works best for them. If the above measures do not provide adequate pain relief, the individual may need to be referred for ongoing physiotherapy treatment. A variety of therapeutic modalities can be effective in treating any orthopaedic problems that arise indirectly from the residual polio-related weakness, such as joint inflammation, tendonitis, and ligament laxity. The physiotherapist can also provide the individual with ongoing relaxation training to help them cope with ongoing pain and to manage discomfort related to anxiety and tension. Some post-polio clients have extreme, widespread pain that interferes with their ability to continue their usual daily activities. These persons may need direction in locating and accessing a comprehensive pain management program or clinic in their community. This type of multifaceted approach in coping with pain, consisting of pharmacological treatment, exercise, relaxation, biofeedback, and counseling, can often elicit a very positive response.

Client Education

The sixth and final management strategy that I will discuss is perhaps the most essential of all – education. What our team hears so often from our clients is the ambiguity of their situation. Many people travel from clinician to clinician, with no one explaining to them the cause of their new severe fatigue and pain. They get a lot of conflicting messages about whether they should be exercising or not, working or not, walking

or not. So many people do not really understand how their initial polio affected their motor neurons. A large number of polio survivors fear that they are experiencing a recurrence of their polio, and undergo tremendous anxiety about how much further their function will deteriorate in the future. Clients find it such a relief when they are finally provided with an explanation as to why they have been experiencing

recent symptoms and reassured that, with the appropriate lifestyle modifications, they will likely not continue to undergo extreme decline. By providing the individual with a plan of action, and an understanding of what they need to do to minimize or slow the rate of future deterioration, even maintain or improve their mobility, the clinician can make huge strides with regards to putting the person at ease. This increased awareness makes it more likely that the client will be compliant with their management program. The client should be involved as an active participant in determining how to approach their symptoms most effectively.

At this point, I’d like to add one last comment to my discussion of management strategies. It’s important to be aware that there is no one standard recipe that works for all polio survivors. Each person has individual needs, and copes with their limitations in their own way. Only by doing a thorough assessment of each client’s medical history, social situation, subjective symptoms, and physical observations, can the clinician determine how to optimize the client’s ability to be mobile and enjoy a full, rewarding life. Rather than focusing only on specific problems, every client should be approached holistically, and considered as a person in their entirety.

Post-Polio Clinic Role and Structure

I’ll go on to provide you with some background information about the role and structure of the Post-Polio Clinic. The Clinic has existed at West Park Hospital since 1986, funded initially by the Ontario March of Dimes, and then through the Ontario Ministry of Health. It currently consists of a physiatrist, coordinator, occupational therapist, physiotherapist, social worker and secretary. The role of the clinic is to provide

assessment and education to post-polio individuals, using a transdisciplinary model. Clients enter the clinic by physician referral. On receipt of the referral, they are mailed a questionnaire to complete, outlining in detail their medical history, physical concerns, and functional difficulties. The team finds this information extremely valuable in providing advance knowledge of the issues that are of prime importance to the client.

Client Care Process

Each client is initially assessed by the physiatrist, and then is referred to the remaining disciplines as appropriate. During the team assessment day, clients are given an education handbook that provides background information regarding the late effects of polio, management strategies, the roles of the different team members, and other resources. The assessment day ends with a wrap-up session with each individual client, during which the team reviews their recommendations and clarifies any questions that the client may have. On assessment by the team, a letter summarizing the team’s findings and recommendations is sent to the client and the referring physician. As the Post-Polio Clinic serves clients from across Ontario, referrals for ongoing treatment are generally made outside of West Park Hospital, in the client’s local community. After coming through the Clinic, clients are mailed a satisfaction survey, providing the team with feedback as to whether the client was satisfied with the process, and whether the Clinic has met their needs. Each individual has the opportunity to have an optional follow-up visit with the team, approximately one year after their initial assessment. This follow-up visit is used to determine

whether the client has had any difficulties in following the previous recommendations, evaluate whether the management strategies have been effective, and to address any new concerns that have arisen. If the client requires no further active involvement by the team after the follow-up visit, they are discharged from the clinic.

Access to Clinicians at West Park Hospital

The post-polio clinic has developed linkages with many other departments or areas of West Park Hospital, and our clients are quite frequently referred to other clinicians within the hospital for assessment, as needed. The list of disciplines that may be involved with post-polio individuals includes: psychology, respirology, speech-language pathology, dietary, chiropody, orthotics, seating clinic, and pre-vocational assessment. One definite advantage of our being located in a rehabilitation hospital is this ability to easily access such a wide variety of services for our clients, and I would like to describe a couple of them in greater detail.

A monthly orthotics clinic has been established as a collaboration between the Prosthetics/Orthotics department and the Post-polio Clinic. Individuals can be referred here by any member of our team to be assessed by the Orthotist, Physiatrist, and Physiotherapist if needed, to evaluate their bracing requirements. They can be seen in the orthotics clinic whether they require fabrication of a new brace, or need modification of an existing brace that is not optimally functional. West Park Hospital also has a hydrotherapy program, to which our clients can be referred. This program provides a person with several individualized instruction sessions with the pool physiotherapist, 1-2 times weekly. During the sessions, they are taught an appropriate pool exercise program which they can then continue independently in a community pool. The pool is accessible by a hydraulic lift, and is kept at a temperature of 94 degrees Fahrenheit.

Outcomes

One of the main goals of my discussion was to fairly extensively describe the model around which we base our management approaches at the Post-Polio Clinic. Based on a qualitative impression of the information that the team collects when clients attend their follow-up visits, these strategies appear to yield very positive results with respect to the client’s overall functional status. Using pacing and energy conservation techniques, most clients are able to control their fatigue, leaving them with adequate energy reserve to participate in a regular exercise regime. Of the clients who keep up with their prescribed exercise program, a high proportion either improve or maintain their strength and endurance levels at the time of reassessment. With the postural support and joint protection provided by assistive devices, many individuals find that they are less restricted by pain, allowing them to follow a more active lifestyle.

The success of the management strategies, however, can only be as good as the client’s compliance. The team has observed that the level of compliance with our recommendations can be limited by factors such as financial constraints, language barriers, geographical remoteness, scheduling conflicts and inadequate support networks. In our experience, the follow-up is an extremely valuable opportunity to identify such barriers and explore new options.

Post-Polio Educational Kit

While referring to the Clinic, I have the chance to tell you about quite an exciting initiative in which we were involved, which I hope may be of interest to you. You may be aware that the Post-polio Clinic has developed educational kits for clinicians about the late effects of polio, which were launched in November of 1995. We decided to pursue this project for several reasons. It is our hope that the kits will help to improve the awareness of health care providers of issues that are relevant to polio survivors. This would make it easier for post-polio individuals to access knowledgeable clinicians in their own communities, and ensure that they are provided with appropriate management. An additional reason for developing the kits was to promote continuity of care for post-polio clients. Such continuity of care relies on the development of essential channels of communication and the maintenance of permanent information resources. In order for polio survivors to be referred to practitioners with appropriate expertise, family physicians need to be aware of the potential impact of the late effects of polio, as well as the services that are available to people who have had polio.

The contents of the educational kits were developed to educate several target groups that may be involved in providing care to individuals experiencing the late effects of polio. These groups include rehabilitation departments in hospitals, private health practitioners, and rehabilitation companies. Despite staff turnover

in health care facilities, it is hoped that, with the educational kits remaining as a permanent information resource for new staff, the level of expertise within the facility regarding the late effects of polio will not be lost as a staff member leaves. The kits have also been promoted to universities, as a tool to increase the awareness of occupational therapy, physiotherapy, and social work students about the late effects of polio. Finally, the kits have been purchased by post-polio support groups as an information resource for polio survivors and their families.

The Post-polio Clinic has developed a specific educational kit for each discipline: occupational therapy, physiotherapy and social work. Each profession’s kit contains a videotape presentation, in addition to written reference materials. In the videotape, the physiatrist and the other practitioners mentioned each discuss essential aspects that need to be emphasized during assessment of a post-polio client, the concerns that are frequently encountered, management strategies, and intervention programs. The video presentation of the entire team was included in each discipline’s kit to highlight the importance of

approaching the management of each client holistically. Particularly for independent practitioners who work alone without the support of the team, it can be most beneficial to have an understanding of the approaches taken by other disciplines. The videotape also illustrates how the roles of the disciplines are related, and how they complement each other.

The remainder of the kit contains discipline-specific written reference materials to complement the content covered in the videotape. Each discipline’s kit contains a section of general background information relating to the late effects of polio that may be relevant to any profession, such as the client education handbook that is distributed in the Clinic, and information about community resources that are especially applicable to the post-polio population. Materials about footwear and adaptive equipment, energy conservation and relaxation techniques, and adjustment strategies to lifestyle changes are also included in this section. The physiotherapy kit further provides sample physiotherapy assessment, reassessment, and referral forms that are used in the Post-Polio Clinic. It also contains materials related to specific intervention approaches that may be relevant to the physiotherapist, such as orthotic management, addressing respiratory impairment, and myofascial release therapy. Finally, the last section of the physiotherapy kit contains materials about exercise prescription guidelines for post-polio individuals. It includes sample exercise programs with illustrative photographs, of several case-study clients that are presented.

I would like to comment on what a tremendous learning experience it was for myself and the rest of the team to go through the process of developing the kits. In doing so, we all had the opportunity to enhance our research skills. Each of the team members wrote original articles for their specific kits, which may lead to future publication opportunities. We discovered new sources of information, and became aware of areas in which scientifically based data was lacking. We also developed new valuable networks with

colleagues and researchers.

I am going to close my discussion with a statement that may seem incredibly obvious, but which is unfortunately too often overlooked: One of the most essential sources of knowledge that a health care provider can access is the client. Through our daily work with post-polio clients, the team is continuously learning about the experience of being a polio survivor, what the clients’ goals are, and how they can be reached. I’d like to share with you a list of what the post-polio population needs from the clinician, which was compiled with input from individuals who have had polio.

SUGGESTIONS AND APPROACHES FOR HEALTH CARE PROFESSIONALS

  1. Attitudes should acknowledge the abilities, competencies, successful careers, and lives of persons with polio.
  2. Use a listening/learning approach that communicates respect for the individual’s knowledge and experience of coping with polio.
  3. Do not misinterpret the level of frustration that individuals sometimes express. Many have searched for years to find health care providers who have a working knowledge of polio and its late effects. 4. Recognize the courage it takes for some individuals to reinitiate contact with the rehabilitation field. 5. Where appropriate, encourage the inclusion of family members in discussion and educational opportunities. Living with the late effects of polio is a family systems issue. Family members also need time to adjust to the changes and challenges associated with the late effects. 6. Be aware of polio survivors’ typical past coping styles and their need to employ different tactics for coping during the rehabilitation process.
  4. When completing documents for individuals, be clear and detailed regarding the impact of the late effects of polio on function. The forms represent opportunities to educate private and government

agencies.

  1. Join the Polio and Post-polio syndrome computer Internet.
  2. Network with the post-polio support group in your area, and encourage your clients to do so.

I hope my discussion has given you a greater awareness of the concerns that you may encounter when treating a post-polio individual, and some practical information about how management strategies can be adapted for the post-polio population. I appreciate the opportunity for sharing ideas!

Physiotherapy Management Read More »

Dr Henry writes about Polio Encelphalitis

Dr. Henry writes about Polio Encelphalitis

Most of the information I have learned in regard to this topic is from the medical literature in the late 40’s and early 50’s. Also the articles written by Dr. Bruno, which can be referenced on his Polio Harvest web page and also on the Lincolnshire web page, are very complete in explaining the probable relationship between post polio central or brain fatigue as related to the original polio encephalitis at the time of the orginal infection.

Many of the posters on this list have mentioned being in comas for a few days, having double vision, breathing and swallowing difficulties, etc with the original infection. Most of us had headaches and tender necks (meningeal irritation) and these symptoms would be compatible with an encephalitis at the time of the original infection. In regard to PPS brain fatigue, many of us have word finding problems, concentration problems, and mental focusing problems when our brains are fatigued. I believe it is true that there have been some findings of highlighting of certain brain areas on MRI’s of patients with mental signs of central or brain fatigue. Hopefully, some of these mysteries will be unraveled in the next several years. I have noticed several individuals on this list complain of some visual problems when they are fatigued. It seems possible that the cranial nerves controlling vision or eye muscle movement or vision areas of the brain may have been affected by the original infection and now are being affected by PPS. Some have complained of double vision and difficulty focusing, possibly related to PPS.

The involvement of the brain in the original infection and the effects of brain fatigue as a part of PPS is a personal interest of mine and I am hopeful that Dr. Bruno will come up with some answers with his research in this area.

Rest your brains as well as your bodies, it helps.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

1st April 1997

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Created: 2nd March 1998

Last modification: 22nd January 2010.

Dr Henry writes about Polio Encelphalitis Read More »

Terminology

Terminology

by Tom Walter

Tom Walter is a Polio Survivor. Up until a few years ago, 30 years or so on from recovering from Polio, he walked unaided with only a slight limp, working and living a normal life. He didn’t even know any other people with Polio. He now has difficulty swallowing and breathing and spends most of his days in a wheelchair or propped up in bed. With his laptop computer he collects and dispenses advice and information on post-polio syndrome. Tom, or TominCal as he is known by his email name, is highly regarded and respected as a source of reliable information by the online post-polio community worldwide.

LincsPPN Web Administration.

Different clinics, doctors, organizations use terms differently, with different meanings or interchangeably, to describe our PPS. And I don’t believe there is any general agreement on their meaning. Here’s some samples.

Not saying it’s right or wrong, but the Social Security Administration calls it the “Late Effects of Polio” and states in its Medical Evaluation Manual:

“For the purposes of evaluation under the disability programs, the late effects of polio refer to new symptoms and neuromuscular manisfestations which result in new functional loss in an individual with a prior history of acute polio. This functional loss typically occurs after a long period (more than 10 years and generally 20-40 years) of stability.”

Dr. Jacquelin Perry gave the following definition at the 1994 GINI Conference — after over 40 years experience at the Rancho Los Amigos Polio Clinic in Downey CA —

“The term ‘late effects of polio’ is the umbrella over three subdivisions…

“…First are the asymptomatic post-polio individuals who have a known history of polio but who are not having troubles now…

“…The second group has symptoms which indicate the lifestyle demands now exceed their muscles’ ability to meet those demands. The symptoms of pain, fatigue, and new weakness are signs of overuse with a penalty…

“…The third group, which we often overlook, is the polio survivor with joint degeneration problems. It is just plain wear and tear, either from substitutive posture used to replace inadequate muscles, or the impact of loading a joint instead of letting it yield on the muscles.”

At the same conference, Dr. Lauro Halstead, head of SCI and PPS services at the National Rehab Hospital

in DC said:

“We do not have enough information, insight, or wisdom to separate specific definitions except for clinical use.

“The three major diagnostic terms — the late effects of polio, post-polio syndrome and post polio muscular atrophy — can be described by imagining three concentric circles. A large outer circle labeled the late effects of polio represents a grab bag. Anyone who has serious involvement with a neuromuscular disease, and it does not have to be polio, will experience a variety of problems, if they live long enough.

“The late effects of polio refers to a group of symptoms and signs which people who had polio many years ago now experience and include weakness, fatigue, muscle pain, joint pain, decreased endurance and new atrophy. They also include increased weight gain, osteoporosis, increased risk of fractures, scoliosis, increase in pulmonary problems, sleep difficulties, and psychological problems.

“People can experience a whole list of problems that are in the big circle as a result of having had polio, but they do not have post-polio syndrome.

“Inside the big circle is a smaller circle labeled post-polio syndrome. More narrowly defined, a diagnosis of post-polio syndrome requires the presence of new neurogenic weakness. . . . Post-polio syndrome is a neurologic disease which occurs as a result of having had an invasion of the polio virus to part of the nervous system many years earlier…

“…The smallest and most inner circle is post-polio muscular atrophy and is reasonably straightforward. It is post-polio syndrome in someone with new muscle atrophy.

“Another better term that might be used for these last two diagnoses is post-polio motor neuron disease which focuses on the motor neuron as the primary source of pathology.”

And at that conference, Dr. Neil Cashman co-head of the Polio Clinic at the Montreal Neurological Institute commented:

“Today there is no consensus, no position paper, no diagnostic test, no agreed-upon criteria about this syndrome, so there will be differences of opinion and some overlap…

“…There is a running controversy in the medical literature of ‘lumpers’ and ‘splitters.’ Some authorities like to put diseases together under certain rubrics, and others like to break off certain diseases. My opinion is that it is too early to split sub-syndromes off the post-polio syndrome.

“My conservatism, in part, is based on work with people who had post-polio muscular atrophy. People with atrophy were just as likely to have pain and fatigue as people without new atrophy. There is not enough data to make a distinction and say this is merely musculoskeletal; that is neurogenic. They act differently and they are treated differently.

“The original meaning of the word ‘syndrome’ comes from the Greek — ‘running together.’ These symptoms present in polio persons time after time, and the symptoms really do run together. There is something going on and, in my opinion, it is too early to dogmatize sub groups.

“The safest term, to date, is post-polio syndrome, and the safest definition of the post-polio syndrome is a new clinical syndrome of pain, weakness and fatigue in individuals who recovered from acute paralytic poliomyelitis.”

Tom Walter

22nd March 1997

LincsPPN Editorial Footnotes.

Terminology.

One other term requires mentioning, that being Post-Polio Sequelae. The following extract from a 1986 article¹ explains its usage.

The new symptoms reported by persons who had polio have been given a variety of names by the popular press, including “Post-Polio Syndrome ” and Post-Poliomyelitis Progressive Muscular Atrophy (PPMA). The initial magazine articles that named the new symptoms also proffered their probable cause. It was suggested that the polio virus, lying dormant in the spinal cord for thirty years, had become reactivated and was giving people polio for a second time. It was also suggested that new weakness was the result of “some kind of amyotrophic lateral sclerosis.” These two suggested etiologies are now regarded as incorrect. The researchers and clinicians who gathered at Warm Springs, Georgia for the First International Symposium on the Late Effects of Poliomyelitis in May, 1984 rejected both explanations because neither has been supported by empirical evidence. The name “Post-Polio Syndrome” was rejected since most persons report some but not all of the five major symptoms listed [unaccustomed fatigue, so severe in some individuals that they must must lie down to rest in the middle of the day – a phenomenon called the “Polio Wall”; new joint and muscle pain; new weakness in muscles affected and in those apparently unaffected by the polio; new respiratory difficulties in those who had bulbar or upper spinal polio that require some to return to using a respirator; cold intolerance, where exposure to even mild cold temperatures results in noticeable muscle weakness, marked coldness and discoloration of the limbs and burning pain – symptoms that increase with aging]. The term Post-Poliomyelitis Progressive Muscular Atrophy (PPMA) was also rejected as a general descriptor of the new symptoms since the over-whelming majority of persons reporting new symptoms are not experiencing progressive muscular atrophy. The Post-Polio Task Force, meeting again in Boston in October, 1984, adopted the term Post-Polio Sequelae as the general descriptor of the new symptoms.

¹ Post-Polio Sequelae: Physiological and Psychological Overview by Nancy M. Frick, M. Div. and Richard L. Bruno, Ph.D. [Lincolnshire Library Full Text]

Definitions.

For several decades there has been a tendency to require a history of paralytic polio before any diagnosis of PPS will be considered. Such a pre-requisite is not supported by medical papers written in the 1950’s and earlier that report evidence of a level of neuronal damage by the polio virus that does not present any clinical signs of paralysis at the time of infection. Hence, a history of non-paralytic polio does not preclude new PPS symptoms or a diagnosis of PPS when all other possible conditions have been excluded.

For a detailed explanation read Non-Paralytic Polio and PPS by Marcia Falconer, Ph.D. cell biology and Eddie Bollenbach, M.A. biology. A Lincolnshire Post-Polio Library publication. [Lincolnshire Library Full Text]

Terminology Read More »

Dr Henry writes about UTI

Dr. Henry writes about UTI – Urinary Tract Infection

A UTI is a urinary tract infection. These infections might also be called bladder infections or cystitis. Some of you may have heard of “honeymoon cystitis” which can occur in either sex. These infections are generally more common in women because of the close proximity of the female ureathra to the vaginal vault. Thus some women are plagued by recurrent UTI’s. Weakness of abdominal and pelvic muscles because of multiple pregnancies and/or PPS can cause stess incontinance in many post menopausal women resulting in a higher risk of UTI’s. Some people actually take an antibiotic daily to control this problem.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

8th March 1997

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Created: 2nd March 1998

Last modification: 24th January 2010.

Dr Henry writes about UTI Read More »