By Stephen Pate – You can improve your life with Post Polio Syndrome by regular cardio and strength building exercises.
Gary Elsner of Boca Raton, Florida proved that Post Polio survivors can regain their lives with exercise. He had post polio for 25 years. He’d become a coach potato until he started to exercise and got his life back.
Mr. Elsner is not an exception. With careful supervision by a physiotherapist who understands Post-Polio, you can do more everyday activities. You can enjoy life to the fullest.
Competitive Athlete Defies the Odds
Exercise does not kill off muscles in Post Polio
“Many (Post Polio) survivors can enhance their optimal health,” says Post Polio Health, including ” their range of motion, and their capacity for activity by embarking on a judicious exercise program. These same polio survivors need not fear “killing off” nerve cells.” (from “A Statement about Exercise for Survivors of Polio” Post-Polio Health.
That’s right. You won’t kill off unaffected muscles and nerves when you exercise. If we don’t exercise, we become weaker and weaker until we lose the ability to live independently. That happens to anyone.
For more than 20 years, some Post-Polo writers have cautioned us that we will lose our remaining nerves and muscles if we exercise. That is simply not true.
Everyone needs to exercise. As we age exercise becomes more important. People with post polio syndrome are not exempt from the need to keep their bodies in top shape. If we don’t use muscles, they atrophy and die.
Update – a recent article from Nebraska makes the same point – seniors benefit from exercise even with Post Polio. Older adults improve lives with regular exercising
Exercise is not going to a fitness center. It can be any activity outside our normal activities. Using a manual wheelchair for part of the day instead of a power chair is exercise. Gardening is exercise. And using special exercise equipment although the range of equipment is limited to devices that allow sitting.
Exercise will not make polio affected muscles stronger but it will work wonders on all the rest of our muscles. If we don’t exercise we become weaker and weaker until we lose the ability to live independently.
A word of caution. We are all different and we should not being an exercise program with the supervision of an experienced physiotherapist.
Advice to avoid exercise is not scientific
A well known writer on post polio syndrome regularly advises against exercise. “POLIO SURVIVORS EXERCISE? NO WAY!” says Dr. Richard L. Bruno. Post Polio Info
Dr. Bruno’s emphatic advice is contrary to published medical research and my own experience. His advice can lead to learned helplessness and only increases the chances you will become more disabled as time goes on.
Dr. Bruno has preached against exercise for decades. I listened to a webinar last month where he tried to make his “no-exercise” advice sound logical. There are many people who believe him because he is a doctor and he’s very vocal in the media. However, he is not-up-to-date with the latest knowledge.
Unfortunately, Dr. Bruno’s advice to avoid exercise is repeated many times by people who don’t thoroughly research the topic. Misinformation is not made right through repetition.
How exercise saved me
When I got Post Polio Syndrome 20 years ago, I read Dr. Bruno’s book. It was depressing. He said my life had changed forever. By accepting his advice as gospel, I learned to be a helpless person who could not improve.
15 years of sitting around doing less and less lead to a heart attack. Faced with probable death, I took cardiac rehab for 3 months. The physiotherapists didn’t accept Dr. Bruno’s advice. They taught me how to exercise to save my life.
People with Post Polio Syndrome can use recumbant exercise devices like the NuStep (Photo The Mobility Aids Center)
I didn’t get weaker from exercise like Dr. Bruno said: I got stronger, like Gary. My life improved. The more I exercised the better I felt. But with the words of Dr. Bruno in my brain, I kept expecting to get weaker any day. It was the Sword of Damocles over my head.
In the spring of this year I read Gary’s story and decided to totally ignore Dr. Bruno. I learned to push past muscle pain until I could exercise every day of the week for at least 2 hours.
I started low at about 20 minutes of exercise a day in May. Then day by day, week by week I tested increases until 4 weeks later I could do 50 minutes a day. By the end of July, I averaged 120 minutes or more all summer.
Polio affected muscles, like my left leg, can’t be improved with exercise. All the other muscles in my body can be made stronger and more flexible. It’s amazing. What’s even more amazing is that not all the muscles in my left leg were polio affected and those muscles are stronger now. How to Exercise If You Are Living with Post Polio Syndrome
One of the surprising benefits is I have less pain. Before this year I tried everything they had to get relief from pain. Now I’m rarely in deep pain, sleep better and don’t need the drugs and pain relief devices as much.
We all need to exercise as we age
People in wheelchairs can exercise (Photo by Anne Davis, Flickr Creative Commons no commercial)
Everyone needs to exercise. As we age, that becomes more important. People with post polio syndrome are not exempt from the need to keep their bodies in top shape.
Here’s a quote from Business Insider UK “If you’re searching for an all-natural way to lift your mood, preserve muscle tone, and protect your brain against the decline that comes with aging, look no further than the closest mirror.”
“One of the most powerful means of reaping these benefits is exercise — and in many cases, you already have everything you need to get it: a body.”
“As we age, two forms of exercise are the most important to focus on: aerobic exercise, or cardio, which gets your heart pumping and sweat flowing, and strength training, which helps keep aging muscles from dwindling over time.”
Research consensus is that post polio exercise is beneficial
Does that advice apply to people with Post Polio Syndrome? Will they get worse if they exercise?
No, a published study of research on post polio diagnosis and treatment concluded that we benefit from exercise, except of course the paralyzed muscles.
EFNS guideline on diagnosis and management of post-polio syndrome. Report of an EFNS task force made these conclusions:
- “Supervised, aerobic muscular training, both isokinetic and isometric, is a safe and effective way to prevent further decline for patients with moderate weakness .
- Muscular training can also improve muscular fatigue, muscle weakness and pain.
- Training in a warm climate and non-swimming water exercises are particularly useful .
- Respiratory muscle training can improve pulmonary function. Recognition of respiratory impairment and early introduction of non-invasive ventilatory aids prevent or delay further respiratory decline and the need for invasive respiratory aid .
- Group training, regular follow-up and patient education are useful for the patients’ mental status and well-being.
- Weight loss, adjustment and introduction of properly fitted assistive devices should be considered (good practice points).
The full text of the study is found here. This study was also re-published in summary by Post Polio Health International
That’s a lot to digest at once but it’s true.
Francine Falk-Allen
I am the author of Not a Poster Child: Living Well with a Disability – A Memoir, published August, 2018. I am in complete agreement that exercise can make us polio survivors stronger. And, it is very important to start out slowly and gradually build up. Exhausting ourselves CAN lead to new weakness. So we are not supposed to “go for the burn.” The recommended path (Lauro Halstead, MD, the foremost polio expert in the US, in Managing Post-Polio) is to see what your maximum is for each exercise, without experiencing pain or exhaustion, and don’t try them all on one day. Then do 20% of all exercises until they are easy, and gradually increase. I do pool exercise (walling, kicks, arm exercise, stretches, swimming) and also daily yoga, and found that when I got up to 7 to 9 hours a week, it was too much, and I began to experience new fatigue and weakness. So I cut back to 3 to 6 hours a week and that has worked well for me in maintaining strength and stamina. Carol Vandenakker, MD, the only polio expert in Northern California, also recommends to do a lot of isometrics and not a lot of repetitions when we exercise. Those build strength without tiring us. Also, Dr. Richard Bruno is not an MD. He is a psychologist or psychiatrist. Some of his advice is helpful, and a lot of it is, as you say, detrimental. I had personal advice from him in correspondence in 1999 and if I had followed it (don’t exercise) I would have gained 20-40 lbs and have more back trouble than I already do, and possibly heart trouble as well. Instead, I went to an Easter Seals pool center and learned a rational, careful set of exercises, which vastly improved my life. Exercise, but use common sense. Francine Falk-Allen, San Rafael, CA
Stephen Pate
Thanks for your comment.
It is true we need to start slowly and add more exercise as it feels alright. My first cardio class they said try 30 minutes. I did 5 minutes. Even this spring after a winter of little activity, I started at 30 minutes and built from there.
I also have a dietician who suggested agreed I needed to lose weight by eating fewer calories and increase my protein intake. I have 2-3 scoops of whey isolate powder a day depending on the exercise level just like someone who is trying to build muscle mass.
Moderate muscle pain is part of the normal muscle building process when we go from being deconditioned to conditioned. I’ll try to re-print the physiotherapist recommendations for a gradual plan. Of course that’s why we should not attempt this without help.
Francine Falk-Allen
Thanks, Steven. Yes, when I was first checked for and diagnosed with post-polio sequelae, the doc asked me about my diet. I told him I was attempting to lose weight and was trying to eat more lean protein and vegetables. He said, “Most polio survivors do best on a high protein diet.” We are using our muscles much like an athlete since our compensating muscles work harder, even just to stand up, if the virus attacked the spinal nerves that go to the legs. I can’t do soy isolate; gives me horrible gas! But chicken or fish daily works well for me. Glad to be in touch. Francine Falk-Allen, Not a Poster Child (PS I meant to say “walking” in the pool, not “walling.” I am currently recovering from rotator cuff surgery and typing is a challenge.)
Stephen Pate
You have a smart doctor.
It’s Whey Isolate made from milk whey.
Hope you recover soon. If it’s not one thing it’s another as we age. Did you use a manual wheelchair?
I was doing gang busters until I had my gall bladder out 5 weeks ago. I was told to slow down for a month. I go back to see if I can resume my exercise program which includes CrossFit and AquaFit 3 times as week this winter along with NuStep 30 minutes x 5 times a week. Winter is hard handle for exercise.
Francine Falk-Allen
Hi, Steve,
I’m not in a wheelchair. I was gardening and got a small tear in my shoulder tendon; then 6 weeks later, when sleepy, stumbled and hit my forearm HARD on the bathroom counter and tore the tendon 2/3 away from the bone. Once they are torn from the bone they never reattach unless sewed back to the bone. So they put a special screw with a head that has teeth in it and sewed the ends of most of the tendon to it; it is in the process of reattaching to the bone. I think of it as the bone and tendon falling back in love and remarrying.
My right leg is paralyzed below the knee; calf, ankle and foot fully paralyzed and 4 sizes smaller than the strong foot. Well, actually I can kind of slightly move a few toes, but it’s almost imperceptible. I am smaller from rib cage down on one side with the top being gradual, the hip being obviously somewhat smaller and not so obviously, deformed (it tried to grow down to make up for the length diff which eventually was 2 inches, all in the leg), and the thigh being about half the strength of the strong thigh. And of course I now know that the strong side was slightly affected by polio as well but it has put in a darn good effort, and looked quite normal to the untrained eye, as has the smaller leg.
i generally can walk at home unaided but with the increased imbalance from having one arm strapped to my torso, I’m using one of my Lofstrand crutches daily. I have a TravelScoot mobility scooter I use for outings and travel. If I walk more than part of a block, I use one or two Lofstrands. I use a cane quite a lot.
I started using a cane in my 30’s (I’m about to finish my 71st turn around the sun) because I thought it looked cool (grand illusion) but I realized a few years ago that it really helped me maintain my strength. I’m glad I started using an assistive device before I was told to. I had a bad fall when I was 40 and was advised to wear a foot-ankle orthotic for my drop foot, and that was one of the wisest things I ever did. helps to keep me from tripping.
Whatever works!
Francine Falk-Allen, Not a Poster Child
Joyce Ward
This article contradicts most of the guidance provided to me by my PPS doctor. I contracted polio in 1953 at age 8 months. I was diagnosed with post polio syndrome in 2009. Prior to being diagnosed with PPS after a series of falls, approximately 15 in a two week period, I walked 2 miles a day, did some weight training and yoga. I had begun to struggle with even walking a mile and fell on my treadmill (escaping serious harm by some good luck). I suffered from severe exhaustion, brain fog and muscle pain. After a full round of testing in hospital, it was determined that PPS was the issue. I have been advised to be extremely cautious and judicious with any exercise. I use a manual chair to avoid further weakening of my arms. I do chair yoga as my main form of exercise-concentrating on maintaining flexibility. I avoid swimming and exercising in pools, 1) the water is always too cold and 2) if I “fall” in the water its not clear I can get back up. ( I had a terrifying episode at the ocean in 2008 where I fell in shallow water and could not get back up–luckily my husband saw me and came to my rescue)
Each person is different. For me, pushing past pain and continuing exercise despite weakness and continued falls contributed to a complete collapse. Someone pointed out that Dr. Bruno is not a medical doctor which is true. However, I don’t think the author of this article is a doctor either. Dr. Bruno has however researched and studied this syndrome for years and has helped thousands of people to understand and cope. I have a medical doctor who specializes in post polio patients who does not advise pushing past the pain and advises careful, gentle exercise with caution. I won’t dismiss this discussion out of hand, but it is concerning. I certainly don’t want to lose any further muscle function or experience the type of fatigue which I used to have. If this works for you and you don’t end up with additional or sudden loss, don’t experience any ill effects that is a positive for you. Not all PPS patients are the same. I would prefer to follow my trained medical physicians advice.
Stephen Pate
Oh my goodness. You’ve had a rough time. Have you considered a power wheelchair at home? It’s much safer than walking and will help you to conserve energy.
My paralysis is similar to yours – total paralysis of the left leg with foot drop and knee lock by hyperflexion. I walked like that for 62 years until I lost my balance, fell and broke my left femur. Ouch! During rehab the physiotherapist refused to help me walk again. When I questioned the Physiatrist she reported to, she said: “I can help you walk again but it’s not safe. If you use your wheelchair as intended, you will probably live to 90 like your mother. If you insist on walking, you will fall again because you’re not stable. A fall after 65 often means a broken hip. In your case with weakened muscles and small fragile bones on the, it could be fatal within the year.” Hardly anyone talks about the fact bones on an affected limb are small.
While she was being dramatic, the outcomes for people over 65 with hip fractures is not good. the Physiatrist agreed with her and I restrict walking to very short distances with forearm crutches.
I haven’t fallen again but I live in fear of it, as I’m sure you do now. When I’m tired, the fall will come back in a flashback.
Stephen Pate
Thanks for sharing your post polio story. Yes that was the advice in the 1990’s but research has shown exercise to be beneficial. Post Polio Health (quoted and linked) and the European study “EFNS guideline on diagnosis and management of post-polio syndrome” (quoted and linked) agree that judicious, supervised exercise of the non polio affected muscles is beneficial. The statement is qualified by who, how and when to exercise and not.
In the article, I quote the 6 guidelines the research supports. These are a summary of the detailed prescriptions. I did not intend for people to take the bull by the horns and self-prescribe an exercise regime. This should always be done with professional medical supervision.
That said, it’s never easy to get people who are knowledgeable about PPS. The physiotherapists at the hospital are but they are only available in my area for events – fractures, strokes, heart attack. I found my private physiotherapist by calling and asking who knew about PPS. Then I interviewed and discussed their level of experience. This is tricky since medical professionals usually don’t like being educated by patients.
I used to follow Dr. Bruno’s advice. I don’t think he has kept up with the latest research. Apart from his condescending tone – he talks down to his readers and spoon feeds his opinions – he is wrong on many of the advancements about post polio. On exercise he is repeating what they said in 1990 not 2018.
On pushing past the pain, I not talking about level 10 pain. When we exercise beyond what’s personally normal, muscles will react with pain. That’s normal. It means, take a rest not this is your limit. Stopping on pain meant I could not make progress. Pushing past the pain is supported by the detailed guidelines for physiotherapists and Gary Elsner’s story. I read that and contacted him. It gave the courage to work harder.
Exercise has not gotten rid of fatigue and “brain fog” which is called “fatigue with associated cognitive impairment.” It’s not a PPS exclusive issue. Everyone gets fatigue on a daily basis. We just get it sooner and rest usually cures it. They’ve studied people who work long shifts and find their decision making impaired as they get tired. There was a contest in Montreal when I lived there where disk jockeys tried to stay awake on the air for more than 24 hours. After 16-18 hours, some of them were speaking gibberish.
As I said, we should all follow trained medical advice but even doctors can learn new treatments. The medical science about PPS is not static. We should be glad of that.
Joyce Ward
Could you explain how exercise led to increased muscle weakness so much so that I began falling?
And your advice about using a manual wheelchair to build up arm muscles is dangerous.
What if your arms and your legs were affected by polio?
I’m not saying you shouldn’t move at all but I do think your recommendations are irresponsible.
Most if not all of the physical therapy people(and doctors) I have encountered have zero understanding of post polio syndrome. I finally found one who did some research and understood that it was difficult to determine the right level of exercise.
Pushing this theory, I fear may have a further negative effect on those who need motarized wheelchairs in being refused by insurance companies who jump on the chance to say, don’t need it, build up your strength and exercise.
I would prefer to follow the advise of an international, Harvard trained physician who works exclusively with PPS patients. I’m happy for you if you had a good outcome with the exercise regimen, but again, you are not a medical doctor. I know you mean well, but honestly, when I read this I felt the same way I do about anti-vaccine folks. Best wishes.
Stephen Pate
Hi and thanks for your comment. I understand that this information may be new to you. However it’s not my advice: it is the advice of Post Polio Health and the European survey of all current research on post polio.
I will try to reply to your points in detail tomorrow and post the full study so that anyone who wants can print it and ask their own doctor.
Joyce Ward
So, I read through the entire study provided above. This is not anything new, as I have read this before. Certain items in the findings caught my attention.
1) the long term effects of training are not documented (known)
2) supervised muscular training—with particularly skilled therapists And where would one find these therapists? Most physical therapists have no idea about PPS and could do significant harm.
3) some of the results are based on patients below the age of 60.
4) training for slightly or moderately weak muscle groups— in selected PPS patients.
This report is not unknown by doctors who work with PPS. Some movement (or excercise) has always been recommended on some level by both polio professionals I have worked with—however, with extreme caution. Learning to walk with assistive devices (extremely heavy braces), using crutches judiciously and incorporating movement of some kind has never been banned. Working out with weights, using treadmills, pushing past the pain are all things I have been advised against and will continue to avoid. I walk around a bit and practice chair yoga several times a week. I am not willing to trade in one or two years of ignoring my doctor’s recommendations for a short term fix, to end up without the use of my arms or good leg.
It is my belief, that years of pushing past the pain, weight training, daily 2 mile walks, swimming and a daily yoga practice led to the loss of much of my function and to where I am today.
The last thing I will say, is your brushing off the issue of brain fog. “Its not just a PPS issue, everyone has fatigue”. For someone to compare the overwhelming fatigue and loss of cognitive function as simply something everyone has, is to deny the reality of this symptom. I had to leave my career because I could no longer be reliable in my ability to carry out my duties due to severe fatigue and being muddled in my thinking. Not because I couldn’t walk, but because I couldn’t think clearly or keep up mentally any longer. Its not a post lunch slump. I’ve had those, as did many of the people I know. This is a fatigue way beyond that. When it interferes with you ability to do your job, its not normal.
I am sincerely glad that for you and the gentleman in the article if you are feeling better and functioning better. However, I also hope it doesn’t come back to bite you in the end. Perhaps it is worth it to push for the present perhaps short term gain. It is not to me. I’d prefer to follow my physicians advice and hopefully maintain at the level I am at for many years. Best wishes.
Stephen Pate
Thanks for your comment. I can hear you loud and clear and of course you should pursue whatever seems right for you.
The evidence is clear that judicious exercise which is more than movement on unaffected limbs is beneficial to people who had polio. Authorities, other than Dr. Richard Bruno, agree that people with PPS benefit from exercise.
Exercise of affected muscles only makes it worse. So if we have one weak leg and one strong leg, walking 2 miles will overextended the weakened leg and things will get worse. A better exercise is swimming, recumbent cycling or recumbent stepping which don’t stress the weak leg.
To find a physiotherapist who has been trained on neuro-muscular conditions, call around to local Physio clinics or call your State physiotherapy body. MS, Chronic Fatigue and other neuromuscular conditions are similar to PPS and you can bring your experience to inform the physio you chose. I find most have some awareness of PPS or can research it.
PPS patients in a wide age group have been studied. I’ll admit we don’t have 5 and 10 year studies but that reflects the small population and limited research resources not a lack of evidence. I’ve had PPS for 18 years. I’ve never suffered any further weakening from exercise. I keep waiting for the shoe to drop because of old fears but it hasn’t.
Death will bite us all in the end. In the meantime anything I can do to improve the quality of my aging life is something to work on.
Linda Pyfrom
Hi Stephen, you have been very aspiring to me. I am a 71 year old man with PPS.
I was age 3 when I was infected with polio in my right leg. I managed very well,,after having surgery to lengthen the tendon in the back of my ankle which enabled me to walk with a limp. At age 60 I started to feel weakness in my leg. Because of my logistics (I live on the family island of Eleuhera,Bahamas) the doctor I saw was an
orthopedic. He told me to exercise & push myself as hard as I can & beyond. When I told him I had heard & read that this is dangerous, his answer was, “I know what ‘they” (the doctors) say but I disagree with them. I continued to push hard & after almost a year I was not getting better just weaker. I now have purchased the Nu step and have just received it. I will start slowly and instead of pushing hard daily I will exercise every other day, as you suggested. If there is a physiotherapist out there who would like to visit Eleuthera, and stay at a lovely cottage on our property on the ocean, he or she are welcome.
Many thanks,
kind regards,
Trevor Pyfrom
Stephen Pate
Dear Trevor (or Linda),
We might be twins – polio at age 3, PPS as we age! Thank you for your comment. Shared experiences encourage us to keep on keeping on. I have the note from my physiotherapist pinned on desk “Increase to 30 minutes of activity on NuStep…increase gradually…1 minute at a time..,up to 5 minutes per level as you can tolerate.” Don’t forget a warm up and a cool down. We always want to do things in a hurry but slowly does it when adding new exercise to our lives.
lindapyfrom
many thanks,
kind regards,
Trevor & Linda Pyfrom