Footwear for People with Post-Polio Syndrome
by Dennis J. Janisse, C.Ped.

NORDSTROM’s department stores will allow you to buy two shoes of different sizes and pay only the price of one pair. It is said that the original Mrs. Nordstrom had polio and established this policy. They will ship to your home if you cannot get to a store. Click here to enquire about using this service, or phone (1-800-285-5800).

At SoleMates you can e-mail others and arrange to buy shoes together, or register and wait for a 'SoleMate" to contact you. This site also lists store locations, mostly in Ontaria, Canada. Telephone (905) 829-0505; Fax (905) 829-5199

by James C. Agre, MD, PhD, Woodruff, Wisconsin

"To exercise or not to exercise," is not the question for polio survivors; rather, the questions are these: what amount of exercise is enough? What amount is too much?

There is no easy answer for all polio survivors, but we can make some general observations about inactivity and exercise.

Limitation in physical activity results in progressive deterioration of cardiovascular performance and efficiency; metabolic disturbances; difficulty in maintaining normal body weight; disturbed sympathetic nervous system activity; reduction in muscular strength and endurance; and possibly emotional disturbances.

          In contrast, beneficial physiologic adaptations to regular exercise include reduction in heart rate and blood pressure; morphologic changes in skeletal and cardiac muscle resulting in improved physical work capacity and an enhancement of cardiovascular efficiency in delivering oxygen and nutrients to the tissues; increased muscular endurance; increased myocardial vascularity; reduced blood coagulability; reduction in adiposity and increased lean body mass; increased cellular sensitivity to insulin; and favorable changes in blood lipids and cholesterol.
          Beneficial psychological changes from regular exercise include reduction in muscular tension; improved sleep; and possible increased motivation for improving other health habits such as changes in diet (reduction in saturated fat consumption, for example) and cessation of cigarette smoking.

Studies have shown strengthening exercise, aerobic conditioning exercise, and ambulatory exercise to be beneficial.

Strengthening Exercise – In Feldman and Soskolne's study of six post-polio patients, the subjects performed non-fatiguing exercise three times per week for 24 weeks or longer. Strength either increased or remained the same in all muscles in all subjects except for one muscle in one subject that became weaker. The authors concluded that the strengthening exercise was, in general, very beneficial.
          Einarsson and Grimby studied 12 subjects who exercised three times per week for six weeks. The subjects performed intervals of strengthening exercise interspersed with rest breaks. All subjects became significantly stronger in the six-week period.
          Fillyaw and colleagues studied 17 subjects who exercised every other day for up to two years. The exercise intervals were interspersed with rest breaks. Over this period of time, all subjects gained significant strength.
          At the University of Wisconsin, we conducted a 12-week study of muscle-strengthening exercise in seven post-polio subjects. Subjects exercised four times per week for 12 weeks at home. Exercise intervals were interspersed with rest breaks. After the 12-week program, the average increase in strength was 36%; also work capacity and endurance increased by 15% or more.

Aerobic and General Conditioning Exercise – Four such studies have been performed. Jones and colleagues studied 37 post-polio subjects: 16 volunteered for the exercise program while 21 served as control subjects. The exercise subjects performed stationery bicycle exercise three times per week for 16 weeks. They began with bouts of exercise of 2-5 minutes on the bicycle with 1-minute rest breaks, progressing up to 15-30 minutes of exercise per session. After the program, the exercise subjects were found to have significant improvements in their aerobic power and their capacity to exercise. The control subjects did not change in this same time interval.
          Kriz and colleagues performed a similar study in 20 post-polio subjects (with 10 exercise and 10 control subjects); however, the exercise was upper-limb cycle ergometry (rather than lower-limb cycle ergometry). In this study, too, exercise subjects significantly increased their aerobic power and exercise capacity.
          Grimby and Einarsson studied 12 post-polio subjects who performed submaximal endurance and strength training twice weekly for six months. Activity was interspersed with rest breaks. Except for one, all subjects were significantly improved from the training program. The exception reported excessive fatigue with the training program. Grimby and Einarsson concluded that combined endurance training and submaximal strengthening exercise can be generally positive in post-polio individuals, but that overtraining can occur.
          Prins and colleagues studied 13 post-polio subjects. Nine performed a swimming and aquatic strengthening exercise program and four were controls. Intervals of exercise were interspersed with intervals of rest. The authors reported significant improvements in strength and flexibility in the exercise subjects and no change in the control subjects.

Ambulatory Efficiency -- Dean and Ross studied 20 post-polio subjects. Thirteen were control subjects and seven performed treadmill walking exercise three times weekly for six weeks. The exercise was low-level, non-fatiguing, and not painful. After the six-week program, the exercise subjects walked more efficiently, while the control subjects showed no change. The study concluded that regular exercise could improve movement economy.
          Exercise studies have shown that judicious exercise can improve muscle strength, range of motion, cardiorespiratory fitness, and efficiency of movement in some post-polio individuals. These benefits appear to occur when they keep their activity and exercise within reasonable limits to avoid excessive muscular fatigue or joint or muscle pain. Post-polio individuals should avoid activities that cause increasing muscle or joint pain or excessive fatigue, either during or after their exercise program because the performance of activity at too high a level may lead to overuse/overwork problems.

• Feldman, R.M., & Soskolne, C.L. (1987). The use of non-fatiguing strengthening exercise in post-polio syndrome. In L.S. Halstead and D.O. Wiechers (Eds.) Research and clinical aspects of the late effects of poliomyelitis (pp. 335-341). White Plains, NY: March of Dimes Birth Defects Foundation.

• Einarsson, G., & Grimby, G. (1987). Strengthening exercise program in post-polio patients. In L.S. Halstead and D.O. Wiechers (Eds.) Research and clinical aspects of the late effects of poliomyelitis (pp. 275-283). White Plains, NY: March of Dimes Birth Defects Foundation.

• Fillyaw, M.J., Badger, G.J., Goodwin, G.D., Bradley, W.G., Fries, T.J., & Shulkla, A. (1991). The effects of long-term non-fatiguing resistance exercise in subjects with post-polio syndrome. Orthopedics, 14, 1253-1256.

• Agre, J.C., Rodriquez, A.A., & Franke, T.M. (1997). Strength, endurance, and work capacity affect muscle strengthening exercise in postpolio subjects. Archives of Physical Medicine & Rehabilitation, 78, 681-686.

• Jones, D.R., Speier, J., Canine, K., Owen, R., & Stull, A. (1989). Cardiorespiratory responses to aerobic training by patients with post-poliomyelitis sequelae. Journal of the American Medical Association, 261, 3255-3258.

• Kriz, J.L., Jones, D.R., Speier, J.L., Canine, J.K., Owen, R.R., & Serfass, R.C. (1992). Cardiorespiratory responses to upper extremity aerobic training by post-polio subjects. Archives of Physical Medicine & Rehabilitation, 73, 49-54.

• Grimby, G., & Einarsson, G. (1991). Post-polio management. Critical Reviews in Physical Rehabilitation Medicine, 2, 189-200.

• Prins, J.H., Hartung, H., Merritt, D.J., Blancq, R.J., & Goebert, D.A. (1994). Effect of aquatic exercise training in persons with poliomyelitis disability. Sports Medicine, Training & Rehabilitation, 5, 29-39.

• Dean, E., & Ross, J. (1991). Effect of modified aerobic training on movement energetics in polio survivors. Orthopedics, 14, 1243-1246.

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Your tickets will be sent to you in the mail. Winners will be notified by telephone.

I was overseas in a remote, primitive part of the world when my father died in 1975. There was no way I could get back to the States in time for the funeral. In fact, I got the telegram on the day of the funeral, three days after it was sent. It was read to me by radio from the coast. I was a missionary in the middle of Irian Jaya, Indonesia, the Indonesian half of New Guinea. Mom's last letter had said that Dad was doing very well. The surgeon thought he got all the cancer; Dad was home and healing. I hadn't expected this.

Mom, at the comparatively young age of 62, was a widow. It wasn't long before I realized that though Mom was doing fine at this point, when she became elderly she might need to be cared for. I promised myself that, if that happened, I would return to the States and provide that care. It seemed only right. I was the only unmarried one of Mom's five children; my siblings had other family obligations. I believed that God's command to honor my parents meant more than just saying I loved my mother, and more than just providing for her physical needs in the ways that helped her feel loved and cared for. It also meant providing the emotional support she would need in her old age.

Mom and I shared a unique, mutual knowledge of our hearts and souls. It was a tie borne out of the long hours Mom spent on this five, then six-year old daughter, daily doing the routines the physical therapist had said were the only hope of coaxing function back into my polio-ravaged body. It was a connection nurtured by the daily letters Mom wrote to me each three-month stretch of time I spent in the Shriner's hospital for my various surgeries from the age of nine to thirteen. It was a profound awareness deepened by my realization, as I grew into adulthood, of the extra sacrifices of time, money, and energy my parents paid to launch me into independence. With deep gratefulness I saw that letting me go was accomplished not only with pride but also with great courage as my parents conquered their fears that I was going far too far away for them to rescue me if I got into a situation I couldn't handle. Especially when I went half a world away, into a primitive culture of (in their minds) unknown dangers. Yet Mom and Dad understood and shared the same level of commitment and love for the Lord that had led me to become a missionary.

I had been in Irian Jaya only a year when Dad died. Widowed mother and single daughter developed an even deeper, almost intuitive soul to soul recognition as we shared not only stories of events, but also our hearts in the weekly letters that crossed the Pacific ocean over the next sixteen years.

Then, in August of 1991, post-polio syndrome forced me back to the United States. I progressively weakened until I needed a respirator and couldn't drive, cook, keep a house or walk more than a few steps. Mom became my caretaker. That had not been my plan.

However, in October 1996, I went to Futures Unlimited, Inc., a clinic in Mississippi, and came back walking, breathing, able to drive, cook and think again. While I was gone, Mom had the first of a long series of small strokes that were to continue for the next five years. So, when I returned from Mississippi, our roles were reversed; I was Mom's caretaker. Now the picture was right. But as more and more tiny strokes robbed increasingly more of Mom's physical abilities and caused her ever deepening dementia, it became impossible for me to care for her at home, even with a team of paid daily caretakers. I was physically much better than I had been before Futures, but I still had post-polio and had limited strength and energy. I was becoming impossibly exhausted. Mom needed 24-hour care. Twice she fell out of bed over night, and I couldn't lift her back in. Even with what my siblings could contribute, the cost of 'round-the-clock care was more than we could handle.

We had no choice but to put Mom in an adult family home. I could still visit daily, but it wasn't the same for Mom. Mom begged to go home, and in her child-like dementia couldn't understand why she could not be with me. Again, it wasn't supposed to be this way. I cried and grieved. I wanted more than anything to care for Mom at home, but I couldn't. It was an absolute impossibility. My heart had not known such pain.

How would I handle this? To curse the polio would do no one any good, and would in fact curse the very thing that had forged the depth of my relationship with Mom. The Bible tells the story about an ancient man, Job and his wife. They suffered the huge bereavement of all their children and property in circumstances beyond their control. She said, "Curse God and die." He said, "Though he slay me, yet will I trust him." In addition to his loss, Job suffered painful boils and prolonged scathing wrongful accusations from friends who blamed his suffering on his own supposed character flaws. Through it all Job did not deny the pain. He cried. He complained to God. He demanded an answer. But he held on to God, and in the end, God came through. Not with a miracle, but with the peace of His presence, a greater understanding of His ways, with personal vindication of Job's righteousness and a new full and happy future.

That certain knowledge that God, who is good and just, is in control is what got me through, too. I knew that one day both Mom and I would see the whole picture, and would see that our small dark shadow highlighted the glory of the story God is painting. Mom got to see it first. She passed into Heaven on April 1, 2001, at the age of 89.

Though I still grieve her loss, I am at peace in the assurance that with everything I had, I honored both my mother and my God.
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SELF (To the disabled individual)

Hint #1 - When faced with a new disability it is common for an individual to fear the worst. Try to avoid this trap by thinking clearly and objectively.
#2 - Another common pitfall is denial. In difficult times we must reach out for help.
#3 - Education about your particular disability is very important. That process goes beyond what the doctors will tell you. Go on-line and type in the name of your disability and conduct a search. Begin reading the wealth of information that pops up.
#4 - There are others out there who have experienced your disability. They can be very valuable to you at this critical time. Another resource may be a local support group. However, it takes time to be able to talk about one’s disability, and support groups often encourage discussion. If you are not ready, you can at least write down the contact number. Some day you may be ready. Another option is an on-line discussion group. It allows for communication without the vulnerability factor.
#5 - Pain is often part and parcel of a disability and certain people experience pain more acutely than others. Only you know what you are feeling. Try describing your pain to your spouse, caregiver or close loved one. That may be difficult, but to block them out of this part of the equation is asking for trouble. They may be your most important asset.
#6 - Finding the right doctor is important. A physician who specializes in rehab medicine is called a physiatrist and can be found under “Physical Medicine & Rehab” in the phone book.
#7 - You are about to find out just who your true friends are. You may have to make new ones. There are a lot of good ones out there.
#8 - Many of us were brought up to believe that it is inappropriate to burden others with our problems. However, this is no time to be stoical. People close to you can tell when you are hurting. Being long-suffering and uncomplaining only demonstrates that they are not important to you, as you are unwilling to discuss your disability with them. As in most of these hints, communication is crucial.

FAMILY (To the disabled person’s family members)

Hint #1 - Don’t beat yourself up if your disabled loved one won’t talk to you about it. This is deeply personal stuff and communication may take some time.
#2 - It is important to educate yourself about your loved one’s disability. The Internet is the place to go for resources.
#3 - Finding a balanced role for yourself in your relationship with your disabled loved one can be difficult. Too much helping is as bad as not helping enough. Know that you will make mistakes. Improving communication will lessen those mistakes.
#4 - There are other caregivers out there who have experienced similar circumstances to yours. They can be very helpful. Consider a support group or Internet discussion group for family members of the disabled.
#5 - Help seek out the proper medical treatment. Be supportive and encouraging.
#6 - Our own anger and fear are common parts of this disability equation. Reach out for your own help.
#7 - Expect role changes and try to look for the positive issues in those changes.
#8 - You will have to focus on doing outside activities. It is easy to become a hermit as many of your friends will not call like they used to.

FRIENDS (To the disabled person’s friends)

Hint #1 – When people become disabled they are often unable to participate in shared activities any longer. A true friend will seek out new activities that will draw them together.
#2 - Don’t be put off by what you don’t know. Take the initiative to find out. Call your friend and ask the tough questions. Putting this off is putting off your friendship.
#3 - Educate yourself about the disability. Be sure that you have the correct name for the condition. Then go on-line.
#4 - Assume the role of enabler in your relationship. You be the driver. You make the contacts. You pay the bill. You suggest new activities then you make them happen. Just don’t push too hard.
#5 - In the case of the aged, if you are used to seeing your friend at a regular function and then one day they are not there, make a call on them. Do it right away. They may need your help.

Next issue I will write about how to act around the disabled, how to be politically correct, how to respond to their needs and how not to respond.
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P.O.S. maintains a large library of information on post-polio syndrome and disability issues.

The material is available by contacting our librarian, Darlene Hansen by phone at (509) 238-4512 or by E-mail at darleneh@cet.com

Some material is also available on our web-site at www.polionet.org/library.htm

and back issues of “P.E.N. & ink” at www.polionet.org/pen&ink.htm