Cold Intolerance and “Polio Feet” as Post-Polio Sequelae
By Dr. Richard L. Bruno, Chairperson, International Post-Polio Task Force and Director, The Post-Polio Institute, Englewood Hospital and Medical Center, Englewood, New Jersey U.S.A.
Polio survivors are extremely sensitive to changes in temperature. At merely cool temperatures, most polio survivors report that their feet have always been cold to the touch, their skin a purplish color. However, as polio survivors have aged, 50% report “intolerance to cold” and that their limbs have become more sensitive to pain as the temperature decreases (Owen, 1985). Cold was reported to cause muscle weakness in 62% of polio survivors, muscle pain in 60%, and fatigue in 39%. (Bruno & Frick, 1987). When polio survivors were cooled in the laboratory from 86o F to 68o F, motor nerves functioned as if they were at 50o F and polio survivors lost 75% of their hand muscle strength. (Bruno, et al., 1985a) But, although polio survivors are twice as sensitive to pain as those without polio, no increase in pain sensitivity was found at lower temperatures. (Bruno, et al., 1985b)
The reason polio survivors have such trouble with cold is that the parts of the central nervous system that should control body temperature were damaged by the poliovirus. In the brain the hypothalamus (the “automatic computer” that controls the inner bodily environment) was damaged by the poliovirus, including the body’s “thermostat” and the brain area that tells your blood vessels to constrict. (Bodian, 1949) In the spinal cord, the nerves that carry the message from the brain that tells the capillaries in the skin to contract when it’s cold were also killed by the poliovirus. (Bodian, 1949)
Thus, polio survivors are unable to stop warm blood from flowing to the surface of the skin as the outside temperature drops. This allows loss of heat from the blood near the surface of the skin and causes the limbs to cool. When the limbs cool, arteries carrying blood to the skin and veins that should carry blood out of the skin narrow passively as they get cold, trapping blue venous blood 
in the capillaries and causing the feet to look blue and to become even colder. The cold skin chills the motor nerves, causing them to conduct more slowly and to be less efficient in making muscles contract. The cold also chills tendons and ligaments (like putting a rubber band in the freezer) making movement of weak muscles more difficult. As polio survivors know, it takes hours under an electric blanket or a long, hot bath to warm cold legs and regain strength.
However, when polio survivors take a hot bath, blood vessels do exactly the opposite of what they do in the cold. Polio feet and legs become bright red as arteries and veins relax and blood rushes to the skin. Then, when polio survivors stand to get out of the tub, they can feel dizzy or even faint as blood pools in their legs and causes their blood pressure to drop (see Bruno, 1997). The pooling of blood in the feet also explains why polio survivors’ feet swell, swelling that increases as they get older. And polio survivors’ easily losing body heat explains why they have an increase in symptoms, especially cold-induced muscle pain, as the seasons change.
Polio survivors need to dress as if it were 20o F colder than the outside temperature. They need to dress in layers and wear heat retaining socks or undergarments made of polypropylene (marketed as Gortex or Thinsulate) that should be put on immediately after showering when the skin is warm. Polio survivors need to remind doctors that EMGs or nerve conduction tests must be performed in a room that is at least 75o F to prevent false abnormal readings and that a heated blanket is necessary in the recovery room after polio survivors have surgery (Bruno, 1996).
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Bodian, D. (1949) Histopathological basis of clinical findings in poliomyelitis. American Journal of Medicine, 6, 563-578.
Bruno, R.L., Johnson JC., Berman W.S. (1985a). Motor and sensory functioning with changing ambient temperature in Post-Polio subjects: Autonomic and electrophysiological correlates. In L.S. Halstead and D.O. Wiechers (Eds.), Late Effects of Poliomyelitis. Miami: Symposia Foundation.
Bruno,R.L.,Johnson,JC.,Berman,W.S.(1985b). Vasomotor abnormalities as Post-Polio Sequelae: Functional and clinical implications. Orthopedics, 8(7), 865-869.
Bruno, R.L. (1996) Preventing complications in polio survivors undergoing surgery. PPS Monograph Series. Volume 6 (1). Hackensack: Harvest Press.
Bruno RL. (1997) Chronic fatigue, fainting and autonomic dysfunction: Further similarities between post-polio fatigue and Chronic Fatigue Syndrome, Journal of Chronic Fatigue Syndrome, 3, 107-117.
Owen, R.R. (1985). Polio residuals clinic and exercise protocol: Research implications. In LS Halstead and DO Wiechers (Eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation.
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Original source: members.aol.com/harvestctr/Library/gcold/l
The Way We Do It (Getting Custom Crutches)
(by Elinor Young)
My crutches are falling apart. On one, the arm rest is held on by two rubber bands looped around it and the handle. As for the other, the screw holding the handle on not only has stripped threads, but also is pulling right through the aluminum upright of the crutch. Both of my crutches shake and rattle with each step. Not good for sneak attacks.
“So, buy a new pair!” you say. A-ha! – but it’s not that easy. They are what one might call modified. I’m not just speaking of the decorations covering all surfaces (part of what is holding them together right now!). Pieces have been cut out or shortened and re-attached to make the crutches lighter and to make them counter-balanced so they swing forward easily almost on their own. All of this better accommodates my arms, which have a modified musculature all of their own.
A friend is all set to cut and drill and re-screw a new pair for me. They’ll probably fall apart in another three years, like these did. A longer lasting solution would be nice.
I have this design in my head for a one-pole crutch. “Surely,” I think, “someone else has thought of this.” So I begin a search on the Internet. Finally I find the Website of a place that custom-makes crutches.* One piece, one pole crutches. No more squeaking and rattling!! If they would put the top part of one style and the bottom part of another style together, it would be just what I have in mind. There’s just one hitch. The price is $450 a pair plus shipping & handling. Gulp. Time for some creative alternative thinking.
I remember a friend in another state who had a pair of custom-made crutches similar to what I want. He told me that he had gone to a place that makes custom mountain bikes and had them make his crutches, permanent psychodelic coloring and all. I also remember seeing along the freeway a sign for a metal fabrication business. I call them first and briefly explain what I want. The woman who answers the phone goes to ask the guys and comes back laughing. I thought so—my crutches don’t compete with steel construction girders. So it’s back to the Yellow Pages where I find just one business that makes mountain bikes. Hairy Gary’s Pedal Sport. His name sounds like the kind of a guy willing to take on a challenge, so I call him.
“Maybe I don’t know much, but a crutch is a crutch, isn’t it?” is Hairy Gary’s first response. With a chuckle, I explain to him what I want, and he comes back with what I can tell he thinks is the knock-out punch. “Well, you wouldn’t want to pay $200 just for a pair of crutches, would you?” I counter with, “It’s better than $450,” and I’ve got him. Hairy Gary agrees to at least take a look at the design pictures I have and talk about it. I go to his house (yes, his house—he doesn’t even have his own shop; he shares time at one) and he agrees to do it if I come back with measurements and a tracing of what I want.
Before I can, though, my friend, the one willing to cut and drill and re-screw, comes with a new pair of standard aluminum crutches and a hack-saw. Being a PT he’s intrigued by this whole thing. He’s also peeved that the crutches he brought are too small. I’m only 4’7” but need ones a bit bigger than this child-size pair. When I tell him about the styles I found on the Internet and about Hairy Gary’s willingness to try to make something sort of like a composite of the two styles of crutches pictured, Rob has a better idea. He has a welder friend who is getting some new equipment to weld aluminum. “Let me see your pictures,” he says. “Now, how do you want these changed?…” I can see the wheels turning in his head. He takes the pictures and measurements of my crutches home with him.
So, I’m still managing with my rattle-sticks that are getting worse every day. But I have hope that one way or another my new special-design crutches will soon be materialized. My leg braces are starting to fall apart, too, but that’s another story….
What’s the point of all this? Oh… I don’t know. Except maybe to say, “Don’t take ‘can’t be done’ for an answer.” If you have an idea of something that would make life smoother for you, go for it! Somewhere you’re bound to find someone who can help you make it happen.
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*http://www.fetterman-crutches.com. Click on “Crutch showcase” then on the “Shepherd” and “Custom Unipose” crutches.
WEB FINDS
Liam Keever, a Licensed Massage Therapist who also calls herself a “Structural Bodyworker,” has put up a new Website called BodymindResources.com. Liam describes it as “a place people can go to learn basic anatomy and how to apply that knowledge practically to find their way out of chronic pain!” She offers free her nine week “Heal Thyself Series” which, she says, “systematically takes the student through every part of their body and teaches them how to restructure themselves to improve their relationship with gravity.” Though we wouldn’t necessarily endorse everything on this site, it looks like some of it could be of help for post-polio. Try it out and let us know what you think.
Another place to go for ideas to help you manage your body is “Specific Energy Conservation and Joint Protection Ideas and Tips.” It includes ideas for everything from organizing your kitchen to how to keep playing golf. It also has tips on what kinds and ways of exercise are appropriate for people with PPS. It even includes suggestions for improving sleep posture.
Have you discovered “RX List, the Internet Drug Index” yet? Going there and checking individual and interaction information of drugs you are taking could save you from some troubling situations.
Can you help
? We sometimes get requests for pen-pals. If you would like to answer these requests for an email pen pal, please let us know (polionet@polionet.org) and we’ll send you their contact information:
“Hello. I’m looking for some ladies to e-mail with, some who have polio. I’ve never had it, but I just lost a dear friend who had polio from a teen-ager. She was 71, I miss her greatly. I’m a 69 year old single lady who loves to write and receive letters through e-mail.” (Rita)
“I’m a survivor of polio and looking for others to ‘talk’ to about problems, etc. No support group in my area. Thanks, Bonnie”
Encouragement is always welcome
…
“Another good issue. Thanks for all the work that goes into producing such treasures as each issue always turn out to be. I’m a free lance writer and know many of the problems that you must run into. Keep the good work going.” -J.N.
Congratulations! Our friend LaVonne won an award with this poem which she sent to share with us:
PASSING THROUGH THE EYE OF A DARNING NEEDLE
Like the careful housewife who lovingly darns holes in the family’s worn socks,
my God mends me.
(LaVonne Schoneman Copyright © 2000)
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Polio Outreach Of Spokane
maintains a large library of information on post-polio syndrome and disability issues. The printed material is available by contacting our Librarian, Darlene Hansen by phone at (509) 238-4512 or by E-mail at darlenekh@juno.com
The material is available on our web-site at
polionet.org/library/
Remember, you are not alone in your struggle. The problems that you or your loved one are experiencing now have been dealt with by others in the past. Their experiences are documented in some great material, all available in our library. Give Darlene a call and tell her what your difficulties are. She can send you the appropriate material.
Honest Reflections
By Marian Zoesch
All of us have felt, but few of us can articulate as Marian Zoesch has in the following poems, the struggle and the victory in overcoming the fear, pain and feelings of helplessness that often accompany our disease. These poems were personal expressions written during such times.
[On the verge of depression, before a surgery:]
DARK IS THE HOUR
I feel empty—like a deep bottomless pit, I feel drained—drained of hope, of care, I feel nothing—nothing seems to go right.
A brick wall stops me from the light.
Three more weeks seem like eternity – I’ve already waited two and a half months. It seems like I’m merely walking in place. Relief comes in snatches—a smile
is plastered on my face.
Am I impatient? Am I asking for the world? Am I counting on this surgery too much? Where’s my hope? What can sustain me?
Help me someone—to again hopeful to be.
[A month later, after the surgery:]
LET THE COCOON BECOME A BUTTERFLY
Out of the depths of sorrow and trouble, Out of the deeps of a solemn cry, Wings of a golden, gleaming body,
Of a majestic butterfly!
When one wraps themselves up too tightly In self pity, self love and self worth The potential that briefly existed
Is lost to never return.
When you start to think of others Share your love, your care and concern The beauty shines forth in its splendor,
As the walls slowly uncurl.
[When frustrated with lack of help:]
WHY?
Lord, why do people have to suffer needlessly? Why do some people seem so uncaring?
Why do rules and regulations take place of humanity?
A brick wall is set.
How can I get around it? Prayer can give power. Power to give strength. Power to get around obstacles.
Help me to gain my strength from these prayers.
You suffered needlessly. You met people who didn’t care. You were crucified for messing with human regulations. You got over the brick wall.
Help me now!
[Five days later:]
THANK YOU
Thank you Lord. You really do care.
You really hear the hurts of your children.
When I thought no one was there, When I felt angry, When I felt discouraged,
When I hurt,
Prayer does work. Prayers break down impossible obstacles. Prayer is refreshing water flowing over me.
Prayers of many have enveloped me.
I was not alone. You have promised to be with me always.
Thank you Lord.
Aspects of Muscle Compensatory Processes and Physical Activity in the Survivors of Polio
by Gunnar Grimby, MD, PhD, Professor of Rehabilitation Medicine, Göteborg University, Göteborg, Sweden
Gunnar Grimby, MD, PhD, is Professor of Rehabilitation Medicine at Göteborg University and head physician at the Department of Rehabilitation Medicine at Sahlgren-ska University Hospital, Göteborg. Since 1983, he has conducted numerous studies on muscle function in polio survivors.
With the increasing understanding of the factors causing new symptoms in polio survivors comes an increasing awareness of the benefits and risks of physical exercise and training. Some training studies have been reported lately in the literature that can be of help in recommending appropriate training regimes. An important aspect is that different muscles in different persons can be very differently affected by polio: some may be atrophied to the point where no exercise or training is possible; some may be moderately weak but in an unstable state showing progressive weakness and a risk for overuse; others may be moderately weak but stable to where some training might be of value; and in some muscles, compensation by reinnervation has resulted in “nearly normal” or “normal” muscle function, but there might be risk for disuse. It is, thus, important to individualize the training advice, not only among individuals but also for different muscle groups of a particular individual.
In practice, this is a great challenge to the physiotherapist, and other professionals who design the training programs, and requires a detailed analysis of the muscle function both with clinical testing and laboratory investigation using dynamometer measurements and electromyography. Our experience is that by having detailed information, the polio survivor has a better opportunity to adopt a daily physical activity pattern that provides the appropriate amount and type of exercise but without overuse and fatigue.
Does too much daily physical activity and exercise training cause acute and/or persistent damage of polio-affected muscles?
To answer this question, detailed knowledge about the compensatory processes in the polio-affected muscles is necessary. Compensation occurs through reinnervation by adjacent nerve fibers to muscle fibers (muscle cells), which have lost their innervation by the death of nerve cells in the acute polio phase as well as later on. The polio-affected muscles otherwise would have atrophied. This compensatory mechanism seems to be very powerful: a nerve cell can reinnervate 4-5 times the normal number of muscle fibers and, in extreme cases, even more than 10 times. The other compensatory mechanism is hypertrophy of the muscle fibers, most likely caused by extreme use of the weak muscle that is still strong enough to be used in daily activities. Even to rise from a chair or walk on a flat surface may give a near maximal load and by that be a stimulus for increase in size of muscle fibers, but not in number, just as in very heavy resistance training. Muscle fibers may then reach a size double or three times the normal size. Thus, whereas physical activity does not seem to be a prerequisite for reinnervation, it is for the increase of muscle fiber size.
Is there a danger in having large motor units (that is, too many muscle fibers innervated from the same nerve cell) and too large muscle fibers? Our recent follow-up studies over eight years (Grimby et al, 1998) indicate that very large motor units, more than 20 times normal, with around 10 times the normal number of muscle fibers, may have problems. Either they may lose some of their muscle fibers and thin out due to defective neuromuscular connections, or they may just die easier. We have no systematic information available whether physical activity and over-use could bring about such a loss of muscle fibers or nerve cells. A defective neuromuscular transmission can be identified in some motor units, but we have not found in our studies an indication that this is a major factor for muscle weakness. Whether it can contribute to muscle fatigue is still under debate. The other compensatory mechanism — hypertrophy (increase in size) of muscle fibers — has a positive effect on the maintenance of strength, but it could be a negative for endurance, as capillarization and the aerobic metabolic system of the muscle cell (mitochondria) do not increase in response to the increase in size. Indeed, such large muscle fibers may be less resistant to overuse.
We know, in fact, very little about the risk of overuse causing persistent muscle damage. What we know now is the risk for long-lasting fatigue after too strenuous exercise in polio-affected muscles. They need a longer recovery period than “normal” muscles, which must be taken into account when designing training programs and adjusting daily activities. In training studies, we have the experience that with long enough rest periods, which could be days or weeks after a too strenuous bout of exercise (Agre et al, 1998), full recovery will occur. Thus, there is a risk for overuse but, with proper attention to the fatiguing symptoms, the function will recover after the exertion. The risk occurs when the polio survivor does not rest enough, and his/her muscles remain in a constant condition of overload, with its negative effects on function. Although this is not easy to prove scientifically and experimental studies would be unethical, we must rely on a successive collection of data to understand the balance between the pros and cons of physical activity. My personal view is that an approach of trial and error under professional monitoring will yield in practical terms what is a beneficial level of physical activity and what could be deleterious for a specific individual.
The literature now documents a number of training studies.
Of prime importance is separating resistance from endurance training programs. A person with weak muscles may use them close to their maximum only for a short period of time, e.g., climbing stairs. Thus, there will be no time for adaptation to endurance. By reducing the intensity, such as walking slower and taking short breaks for other types of activity, both resistance and endurance training at an appropriate level may be achieved. Another way is to choose a medium where the load can be more individualized between muscle groups as in pool training. In a study with a control group at our polio clinic, increased general endurance and less pain in daily life was demonstrated in the group with pool training compared to the group that received advice about their physical activity. There was no deterioration of function after the pool training (Willèn et al, 1999).
Other training studies indicate the possibility of improving the general endurance of polio persons by using individual training programs, as on a bicycle ergometer, or group training on the floor with combined endurance and submaximal resistance training with music (Ernstoff et al, 1996). In general, it would be of value to encourage endurance types of programs with proper intensity and the possibility of individualizing the load as in pool training, giving proper time for rest between the exercises. The role of resistance training for polio muscles is more controversial. However, short-term resistance training at high or maximal intensity has been demonstrated to give an increase of muscle strength in moderately affected muscles, measuring more than 3 on the manual muscle testing scale (Einarsson, 1991). Such an increase in strength seems to be maintained, probably by adaptation of the physical activity level in daily life, and could be beneficial and allow a broader type of exercises with relatively less effort. Such a program did not result in any negative effects or evidence of muscle damage when properly supervised. Also low intensity strength training can improve muscle performance and reduce the experience of fatigue. There was no change in serum creatine kinase after a 12-week muscle-strengthening program, which would have indicated muscle damage (Agre et al, 1997).
To learn the appropriate level of physical activity to avoid unnecessary overload on the one hand and disuse on the other is important for maintaining optimal physical function in polio-affected muscles.
As important is to avoid pain, it being both a limiting factor for physical performance and an indication of overload that could be on muscles as well as joints and other tissue structures. The experience of pain is evidently closely related to physical activity. Individuals who spontaneously chose a walking speed close to their maximum speed were more prone to experience pain in their daily life (Willèn et al, 1998). The results of that study indicated also that those who were less affected by muscle weakness experienced more pain than individuals with weaker muscles, and they might, thus, have a pattern of daily activity that was too strenuous. Advice and adaptation of the daily physical activity to avoid pain is an important feature in the post-polio management.
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References
Agre, J.C., Rodriguez, A.A., & Franke, T.M. (1998). Subjective recovery time after exhausting muscular activity in postpolio and control subjects. American Journal of Physical Medicine & Rehabilitation, 77, 140-144.
Agre, J.C., Rodriquez, A.A., & Todd, F.M. (1997). Strength, endurance and work capacity after muscle strengthening exercise in postpolio subjects. Archives of Physical Medicine & Rehabilitation, 78, 681-686.
Einarssson, G. (1991). Muscle conditioning in late poliomyelitis. Archives of Physical Medicine & Rehabilitation, 72, 11-14.
Ernstoff, B., Wetterqvist, H., Kvist, H., & Grimby, G. (1996). The effects of endurance training on individuals with post-poliomyelitis. Archives of Physical Medicine & Rehabilitation, 77, 843-848.
Grimby, G., St. Âlberg, E., Sandberg, A., & Stibrant Sunnerhagen, K. (1998). An 8-year longitudinal study of muscle strength, muscle fiber size, and dynamic electromyogram in individuals with late polio. Muscle Nerve, 21, 1428-1437.
Willèn, C., & Grimby, G. (1998). Pain, physical activity, and disability in individuals with late effects of polio. Archives of Physical Medicine & Rehabilitation, 79, 915-919.
Willèn, C., Stibrant Sunnerhagen, K., & Grimby, G. (1999). Dynamic exercise in water in individuals with late polio. Manuscript submitted for publication.
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Reprinted from Polio Network News, Winter 2000, Volume 16, Number 1 with permission of Gazette International Networking Institute, 4207 Lindell Blvd., #110, St. Louis, MO 63108-2915.
Original source: www.post-polio.org/ipn/pnn7/l#aspects moved to www.post-polio.org/ipn/pnn16-1/l#grimby
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