"Since retiring after 40 years of dedicated, full time county service, Dr. Perry continues her work at Rancho but in a new capacity -- as a volunteer. Because she continues to believe that post-polio syndrome is under-treated by the general medical community, the Rancho Post-Polio Clinic remains open and she continues as chief of Post-Polio Services. Dr. Perry also volunteers as medical consultant for the Rancho Pathokinesiology Lab. When the opportunity arises for her to speak at worldwide conferences or lectures, Dr. Perry uses the occasion to educate other medical professionals about PPS. " - Mary Clarke Atwood

Answer: When focusing on the natural progression of PPS it is important to understand that muscle function depends on three systems:

1. control from the brain
2. sensation from the periphery
3. the lower motor system from the spinal nerve cell (anterior horn cell) down to the muscle.

The third system is the most important for people with PPS because if you lose the nerve, you lose the muscle. We talk about muscle weakness, but polio is actually a nerve disease that damaged or killed anterior horn cells. This makes a lot of difference in terms of exercise, etc.

• ACUTE:   During the acute phase of polio some spinal nerve cells died while others were injured but later recovered. Some people had paralysis -- others did not. The effects were like spatter paint. If you had a lot of "paint" you had a lot of damage, while others were just touched lightly. But all survivors were left with a damaged neuro-muscular system.

• RECOVERY:   Recovery from polio entailed all three methods of recovering function:
  1. Neuro recovery
     Between 12% - 91% of the nerve cells that were injured -- not killed -- by the polio virus recovered.

  2. Axon sprouting
     New branches of the remaining nerve cells were sent out to adopt the orphaned muscle fibers. The result was that each nerve was then doing 50% more work or even up to four times as much as normal.

  3. Hypertrophy
     The muscles enlarged themselves up to about 40% so they could increase function.

  It is not known how much a survivor's recovery was due to spontaneous nerve generation, how much could be credited to patching by the axon sprouting, and what amount was due to hypertrophy. Upon recovery polio survivors had a random disability in regard to the amount of paralysis. The amount of muscle weakness a person had was pure chance; it depended upon the amount of polio virus a person had and where it went. Some survivors remained paralyzed, while others looked or felt normal although they were not.

• RESEARCH:   During the 1940s Bodian traced the polio virus in the motor nerve cells of monkeys. He found that polio, a systemic disease, affected 95% of these cells by either injuring or destroying them.

  Research confirms that there is some obvious weakness as a result of polio:

  • Agre found that polio survivors with no current symptoms had only 80% of normal muscle strength. Symptomatic survivors had 60% or less muscle strength compared to the normal group.

  • Following a four-year study Grimby reported a normal 2% - 5% loss of muscle strength in asymptomatic polio survivors, but for symptomatic survivors this loss may be as high as 13%.

  • A study by Grimby confirms that weaker muscles work longer and twice as hard.

  This research says that it is necessary to protect this overused muscle system. The muscles that are grade 3, 3+, and some 4s are getting all the exercise they can tolerate. In order to maintain this function these muscles must be protected from overuse.

• NOW:   For many, many years polio survivors have been working with a damaged neuro-muscular system that keeps working harder than ever to meet normal demands. We need to appreciate the fact that each anterior horn cell innervates several hundred muscle fibers and the surviving horn cells have been doing 50% more work than normal. Plus it appears they don't like being overworked!

  Because of this overuse of the neuro-muscular system, new weakness is now developing. Survivors may develop new weakness not only in "polio" muscles but also in other muscles that did not seem to be involved during the acute phase.

  Although the amount of weakness a polio survivor develops in later life depends upon the original involvement; age is also a factor. Anterior horn cells do not have infinite durability -- they begin aging at about 60 years of age. So polio patients aged 70 and up have a natural weakness just from age that needs to be appreciated and put in perspective also.

Answer:
MESTINON:   Recently there has been a six-center study of the drug Mestinon (pyridostigmine) in 126 patients. Mestinon acts at the nerve-muscle junction by changing the chemistry and making the connection last longer. For many years this drug has been used for myasthenia gravis patients. Since Grimby's research has shown that polio survivors can overuse the nerve-muscle junction, the use of Mestinon for some polio survivors makes sense to Dr. Perry.

In this recent Mestinon study, Dr. Daria Trojan reports that there was trouble getting statistical significance, but the best correlation between Mestinon and relief versus the placebo occurred in subjects who had 25% or less normal strength, i.e. muscle grades 3+ and down. Dr. Perry believes Mestinon has a role for those who are quite weak, but for people with grade 4 muscles and up she has observed no improvement with its use.

ANTI-INFLAMMATORY DRUGS:   These medications have been Dr. Perry's mainstay because the first reaction to muscle overuse is inflammation. These drugs take away the added insult from having overdone but they are not pure pain medicines. Dr. Perry does not use pain medications per se for PPS because they only mask a person's overuse and do not help that problem. She wants patients to control their lifestyle and not overdo and thus avoid the pain of overuse.

GROWTH HORMONES:   These drugs have been found to relate more to muscle function than to nerve control. They seem to parallel function rather than control function. No significant changes have been found for polio survivors.

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Answer: The answer is yes and the answer is no. The easiest way to stimulate a muscle is to use one that has a nerve. Therefore, this involves the nerve-muscle junction. Electro-stimulation has been tried on a few polio survivors at Rancho with no affect; Dr. Halstead, a polio survivor affiliated with National Rehabilitation Hospital in Washington, D.C., tried it on himself with no affect; several of Dr. Perry's patients tried it at Dr. Pape's office in Canada with no affect. So electro-stimulation is not an answer. Post- polio patients' problems are with the nerves.

EXERCISE:   Some researchers in other parts of the country favor exercise for certain polio survivors. I observed that their research has been done in parts of the country that have bad weather -- so their subjects already have about 3 months disuse due to climate. Here in Southern California we do not have disuse because of bad weather. If disuse of muscles does exist, then exercise may be needed. But if there is no disuse, such as here in Southern California, exercise is not indicated.

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Answer: The answer is yes. Following an acute injury there is a period of disuse during recovery. Up until the time of injury a person's strength has been built up very gradually. There is an old saying that says, "If you can lift a calf every day, when you become an adult you can lift a cow. But don't ever stop." This phrase is saying that if you got a very small amount of increased exercise on a regular basis (as the calf got larger) you built up yourself gradually. But don't ever change the model. As soon as you stop, there is no way you can exercise that gently anymore. It is very difficult to recover on a therapeutic basis after that. Once there has been an injury the model has been changed.

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Answer: Spinal stenosis is the thickening of bone around the spinal canal. It does occur in natural society but it is not very common. I have not seen any PPS patients with spinal stenosis.

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Answer:

• Problem 1: Shoulder pain develops in crutch users.
  What does a crutch do? It supports body weight. The more weight, the more it goes on your hand, elbows, and shoulders. When the normally powerful shoulder depressors (pectoralis major, etc.) wear out, the shoulder takes the strain and the supraspinatus tendon gets impinged (pinched). This impingement cannot be prevented. Pain indicates it is time to ride -- in a wheelchair or scooter if appropriate.

• Problem 2: Upper arm pain when reaching overhead.
  Reaching overhead uses two muscle systems. A person can avoid overhead reaching by using a reacher when necessary and by not placing things above the shoulders. Find other activities that do not involve shoulder use.

• Problem 3: A person's arm dropping away from the socket (usually about 1/4 - 1/2 inch).
  Slings don't usually work too well because they hang from your neck. I prefer to use a gunslinger apparatus to help support arm and shoulder. A gunslinger is a device that rests on the hips/pelvis area and has one or two attached pieces to support the forearm(s).

  Some patients use a fannypack under the arm for support.

• Problem 4: Shoulder and neck pain when working at a desk.
  When working at a desk, do not lean forward to do your work. Instead, try to lean back ten degrees so gravity is helping your muscles. Bring your work to you.

There are three things a person can do to relieve the strain on the upper body muscles:

1. eliminate reaching
2. support the arms
3. break up activities

ADVICE:  Listen to your body. Feel the aches and pains. Then do something about it.   Be an intelligent hypochondriac!

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Answer: I do not recommend cold packs but prefer using ice massage for only two minutes. Ice can interrupt the inflammation very quickly and it does not cause congestion.

Hot packs are fine. Heat increases circulation immediately. The only trouble with heat is that it can cause congestion. Do not use heat for longer than 10 minutes or it can make things worse. Twenty minutes is the traditional time but I think it is too long. Repeated 5-minute bursts (maybe 2 or 3 times a day) would be better.

In one sense it doesn't matter if you use heat or cold. In reality, it is nice if you can use cold because it breaks up the inflammation faster. If you use heat too long and get mottled skin, you have really done too much.

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Answer: I am not sending anyone for acupuncture although some patients are trying it and getting help. It is not going to do any harm. The reason I do not prescribe it is because I do not have any indication of whether it will help or not help. When I make a prescription I would like to know the outcome.

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Answer: No, PPS cannot be part of a weakening heart muscle. The muscles and nerves to the heart are a different system so there is no direct connection to PPS.

A person can be deconditioned by not being active, but if you are not strong enough to be active your heart does not have to be that conditioned. So don't worry about it. Just don't get fat and do avoid cholesterol!

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Answer: Muscle twitching is a sign of overuse. It can happen to anyone, not just people with PPS. Cramping is also a sign of overuse. A polio survivor needs to change his lifestyle to avoid overuse of muscles. [Conserve it to preserve it.]

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Answer: For an arthritic hip, total joint replacement is just fine if you have the muscles to control it. A polio survivor needs to have about grade 3 hip muscles for this surgery to be successful. Otherwise the hip will dislocate.

The knee is simpler to handle because it can be put in a brace since it is a tubular structure. But there is no brace for a hip.

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Answer: A study on sleep disorders compared people with PPS to average people. Both groups had the same problems -- restless legs, etc. I suggest that, before going to bed, people get themselves comfortable, warm, and perhaps take 2 Advil (or something like that) to get rid of the aches and pains. If a person awakens in the middle of the night, it may be helpful to get up and start again. Half the world has trouble sleeping all night. This is not unique to polio.

If a polio survivor has been diagnosed with sleep apnea it is probably related to breathing or swallowing problems from PPS.

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Answer: Meningitis is an inflammation of the coverings of the spinal cord and brain. At one time was called polio-encephalo-meningitis. It was actually an involvement of the whole system -- whether it was called meningitis or not. The main way of identifying polio was with a spinal tap. It is only a technicality if the illness was called polio or meningitis. It is all the same -- an inflammation of the nervous system. If it got into the anterior horn cells it was called polio. There are a lot of neurological problems that are not highly defined, but can be identified by lesions revealed during autopsy.

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Reprinted from Rancho Los Amigos Post-Polio Support Group
Newsletters
© Rancho Los Amigos Post-Polio Support Group Newsletter
and Mary Clarke Atwood

The Rancho Los Amigos Post-Polio Support Group meets the 4th Saturday, from 2:00-4:00 in Downey, CA.
Contact: RanchoPPSG@hotmail.com for more information.