Source: This is an excerpt from an article by Stephen Pate, originally published by the NJN Network on 26 March 2017.
If you have post-polio syndrome, it’s vital to exercise moderately every second day to keep the muscles we have and avoid obesity, diabetes, stroke and heart disease.
Exercise also helps us accomplish more of those activities of daily living and can improve how we feel.
While it seems obvious, many of us with post-polio syndrome face enough weakness, fatigue and pain every day to make exercise seem impossible. We’ve tried exercise before and many develop an attitude of learned helplessness.
Thus, we rely more and more on assistive aids like wheelchairs and scooters. Lack of physical activity contributes to weight gain, which makes things worse and we become even more deconditioned physically. It’s a negative spiral we need to fight against.
I’ll try to give you some practical suggestions that have worked for me, along with some that haven’t. And I’ll outline how I did recover some ability with the NuStep exercise machine. As a precaution, I waited until I had 2 years of experience with the NuStep before recommending it, notwithstanding most hospitals use it as standard rehab equipment.
Exercise is one of the standard post-polio syndrome treatments, along with rest, diet, energy conservation, environment adaptation. It’s also of the hardest things to do.
The Mayo Clinic sums up the exercise prescription like this:
“Physical therapy. Your doctor or therapist may prescribe exercises for you that strengthen your muscles without you experiencing muscle fatigue. These usually include less strenuous activities, such as swimming or water aerobics, that you perform every other day at a relaxed pace.
Exercising to maintain fitness is important, but be cautious in your exercise routine and daily activities. Avoid overusing your muscles and joints and attempting to exercise beyond the point of pain or fatigue. Otherwise you may need significant rest to regain your strength.”
So, the gist is get some exercise – maybe swimming or water aerobics – every second day, but don’t do too much or you’ll be in trouble.
I’ve had post-polio syndrome for 18 years and exercise is the bane of my existence. How do I get enough exercise without making things worse?
I used to hate exercise as part of the post-polio prescription. How can I exercise if I can’t walk, or walk very far? That question is part of the learned helplessness that can go with any disability.
Some medical professionals look at us on crutches or in wheelchairs and tell us to go easy. So, we assume the part of being helpless about our physical health. That’s deadly.
There is plenty of published evidence to show people with post-polio need and thrive on regular and moderate aerobic exercise. Strength training exercises for post-polio are not recommended as it may damage weakened muscles.
The principles of safe and effective exercise for people with post-polio syndrome are:
Moderate level aerobics
At a moderate pace
Every second day
Supervision by a registered physiotherapist or kinesiologist with training and experience about post-polio syndrome
If you haven’t been exercising, start gradually. At one clinic, they wanted me to do 30 minutes on day one. Luckily, I was so weak I couldn’t comply. Everyone has a different starting point and capacity.
My physiatrist recommended exercising for three days in a row about 5–7 minutes, or until I felt tired. He said I would like feel tired sooner as each day passed, which was true. Then he said to average the time for three days and use the average as the time for each session.
He suggested adding one minute every week until I was at 30 minutes every second day. That seemed to work but later I developed problems with pain and added fatigue. A more cautious suggestion is to add one minute of exercise every 2 to 3 weeks. It’s not a race.
If an exercise machine has 10 levels of resistance, moderate is five. When you exercise with people we seeing sweating to stay fit at health spas and workout joints, they don’t have post-polio.
Trying to decide what is ‘moderate’ is the problem. Each person has different capabilities. Studies on what level people with post-polio syndrome can handle are generally short-term and inadequate and may not be a good guide for you.
Again, it’s not a race and a moderate pace is all you need. For example, I’ve seen people do 170 steps per minute on the NuStep. I tried that and my physiotherapist slowed me down to 115 steps per minute at the most. Each type of exercise will have a moderate cadence that you can use. Start slow in any event, about one third of the maximum you expect to keep up. For 115 my starting point was 40 steps per minute. Each person will have a different moderate pace set by the physiotherapist.
Exercise every second day
Whatever exercise works for you, the recommendation is to exercise every second day, resting in between. Post-polio syndrome muscles and nerves need a rest. The exercise should be moderate, not strenuous. You don’t want to be sweating or out of breath at the end of your session, nor do you want muscle pain.
Getting exhausted is not recommended. Exercising past the point of pain can harm already weakened muscles. All the popular forms of exercise can damage post-polio syndrome nerves and muscles.
The every second day advice is not always recommended by professionals who are not experienced with post-polio syndrome patients. When the sports physiotherapist told me to exercise five times a week, I had to reply that post-polio syndrome patients are advised to take a day off between exercises. She looked it up in her book and agreed. (ACSM’s Exercise Management for Persons with Chronic Diseases and Disabilities)
I recommend you try to find a regular exercise that you can do at home during good and bad weather. Exercise clubs are great for some people but you may find the effort of going there, exercising and coming home is more than you can handle every second day.
Supervised by a physiotherapist or kinesiologist
These suggestions should be taken under the care and control of a physiotherapist who understands post-polio syndrome. Don’t do it on your own. If your physiotherapist is vague about post-polio syndrome, ask them to research it before making recommendations.
Post-polio syndrome exercise is not training for sports, the Olympics or muscle strengthening. Walk or wheelchair away from sports physiotherapists. They likely don’t understand post-polio and can get you in trouble. I did work with one who looked it up in the book of sports physiotherapy and learned how we are different. Before that she kept pushing me to do more.
In the often-cited Kriz study, 10 post-polio syndrome patients exercised for 16-weeks at an intensity 70%-75% of potential heart rate. The post-polio syndrome patients kept the same intensity as the control group who were not disabled. No long-term pain was recorded. The results of the study were that 10 people had improved cardiovascular health.
What the study did not decide was if they could keep up that level of exertion over the long term. My experience has been that post-polio patients should be very cautious. I’ve had two instances where guided physiotherapy caused me nerve and muscle damage that took 3-6 months to recover. The first time I noticed pain was nine months after starting 30 minutes every second day. It can be discouraging to stop exercising because muscles are sore, but that can happen.
Types of exercise for post-polio syndrome
I’ve tried several types of exercise and rate them from most to least effective:
3. Hand cycle
4. Swimming or water aerobics
The NuStep is a recumbent stepping machine that seems designed for post-polio. You sit and exercise with both your arms and legs, one or the other. The NuStep has straps for your feet, leg stabilizers for abduction, gloves for a better grip and a Polar heart monitor.
For the first 10 years of my post-polio diagnosis, I was active, perhaps too active. But I had no regular aerobic exercise routine. After a leg fracture, I became seriously de- conditioned until I had a heart attack. Afterwards the physiotherapist could not suggest anything I could do for exercise.
Then I went into Cardio Rehab where they had a complete gym with machines and discovered the NuStep. It was the only machine that I could use for exercise. I have a left leg with very little muscle strength from the hip to the toe.
With patience, I could carry out 30 minutes of aerobic exercise every 2nd day. I started at a low resistance level of 2 and worked my way up to 6 with an interval of 7. That was a mistake. A moderate level for me was 4-5.
I also tried to go too fast. Later the physiotherapist stopped me at 115 steps per minute. It’s not a race, right?
Within 6 months, my left leg – the one with no muscle function – could push the pedal at level 3-4. The physiatrist said the NuStep was strengthening my hip and back muscles.
There have been setbacks when I tried too hard had to stop for various reasons. Overall, the NuStep helped me to get my energy back and engage in more activities of daily living. The NuStep has allowed me to work too hard, which is typical of a polio survivor with an over-achieved attitude.
The NuStep is also relatively expensive – about $5,000 US with various accessories; however, you may find the cost similar to a multi-year spa membership and the convenience of your own NuStep is hard to beat.
The NuStep is a popular exercise machine at spa’s and the YMCA across North America. If you live near one, get a trial membership to see if it works for you. Since there is less preparation than swimming, you may find the effort to go to a spa acceptable and there is always the opportunity to socialize. Google “NuStep post-polio” for more articles.
Walking is the easiest and most recommended aerobic exercise, except if you can’t walk. Your body is upright and you are using your legs, arms and back and giving your heart and lungs a workout. You can control the pace and duration of your walking.
Some people with PPS can still walk with canes or crutches walk for exercise. I knew a man with PPS who walked regularly despite having moderate to severe paralysis in each leg. He used forearm crutches and wore leg braces. As he got older, he had to give up walking because it wore him out.
Even though my walking is shaky and potentially dangerous, I still try to walk with forearm crutches every day for 5-10 minutes. It’s good exercise, non-strenuous and it keeps me upright and moving. Even standing in place is a good exercise. Ironically, I had not been able to walk again until my second month of physiotherapy using the NuStep since it strengthened my leg and back muscles.
Hand cycles are a sit-down aerobic exercise that is recommended for people with post-polio syndrome, usually for those who didn’t have polio effects in their arms and upper body. Hand cycle exercise will give you an aerobic exercise but it’s terribly boring.
Hand cycles are relatively inexpensive to buy and can be clamped to a table that is suitable to your sitting height, in a chair or wheelchair.
Swimming or water aerobics
Swimming or water aerobics are often recommended for post-polio syndrome exercises, for example in the Mayo Clinic article. Water has low resistance to movement. It’s generally warm at the pool. President Franklin D. Roosevelt took water exercises for his polio.
If you have a swimming pool or one in your living complex, I recommend you try it.
However, swimming is only one task involved in water aerobics. You must get ready to leave home, travel to the pool, shower (usually one of the rules), and change, navigate wet tile floors and then you’re at the pool side. Once the 20 minutes of exercise is over, you must repeat the process in reverse.
Swimming defies the rule of conserving energy since you may spend more energy getting to and from the pool than during the exercise itself. 18 years ago, I signed up for swimming and went to only 2 classes before I got exhausted. I repeated it a year later with the same results. I was exhausted from each trip. I was also worried that I might slip, fall and break a bone.
Good luck with your exercise program and make sure you get a physiotherapist helping you.
The anecdotal comments about physiotherapists are not intended as a criticism. Post-polio syndrome is not the most common disability and even health professionals may not be fully versed on prognosis, diagnosis and treatment.
For more information check out www.post-polio.org or the post-polio organisation in your country.