Once again your Board of Directors has elected myself as President. With this endorsement I shall endeavour to promote our organization within the Health Boards of Saskatchewan. I received a letter from Nipawin requesting information on forming a Support Group. In that particular area we have 15 registered polio survivors and arrangements are now being implemented to form a group.
Our Provincial Office at 2310 Louise Avenue now has a computer. This was donated by Sask Power with a laser printer and a modem. We do not as yet have a phone installed but by September everything will be in place. We are hoping to be on the Internet and through this have access to more up to date research and treatment data. This puts us close to staffing on a volunteer basis.
We have on-going negotiations with a Corporate sponsor, with the possibility of some exciting news in the future.
Polio Regina Inc. are planning a conference on October 26, 1996, and we will forward the details as they come available.
Ron Johnson, President
Our eighth AGM was held April 27, 1996 at the Saskatchewan Abilities Council, 1410 Kilburn Avenue, in Saskatoon.
The day began with a workshop on the Psychological Aspects of Post-Polio presented by Kim Gleim, B.Ed.,P.G.D.,M.Ed. (Cand.) from Cardwell Human Resources, Saskatoon. Kim's presentation was really well given with members and guests expressing a real relationship to all areas and aspects of the talk. Many areas were discussed in relation to the feelings and conceptions of members and their guests. The reality of this was perhaps in the fact that Kim's mother is a polio survivor and Kim herself, diagnosed with Crones Disease. A real sincere thanks to Kim from all who participated.
The Annual General Meeting began after lunch, along with some of the door prize draws. The meeting with twenty five members in attendance was called to order by Hugh Woodcock, President. The minutes were taken by Barbara Duffield, Secretary. Members of the Board present were introduced, and adoption of agenda was carried. Financial and Auditor's report was carried, Ian Wilkinson was once again nominated as Auditor for the fiscal year of 1996. The presidents report was presented and carried. A brief update on office operations at 2310 Louise was given. The resolution presented by the Board regarding raising annual membership to $10.00 beginning January 1997 was carried.
Nominations of the 1996/97 Board was presented by Pat Kjorsvik. A suggestion was presented by the committee that the number of Board members be reduced, due to problems obtaining a quorum for meetings.
The following members let their names stand for 2 year terms.
Presented by the Nominating Committee as a slate are:
Ronald Johnson, Saskatoon (retired & long-term disability)
Donald Thompson, Saskatoon (long-term disability)
Hubert Woodcock, Aberdeen (farmer)
James Allonby, Regina (Provincial employee)
All nominees carried.
Nominees from the floor are:
Anna Daughn Falkingham, Saskatoon (nanny) Nomination carried.
Ken Wilson, Saskatoon (Architect) Nomination carried.
Meeting was adjourned.
Your 1996/97 Board of Directors are: 1.James Allonby, Regina,(306) 789-9217;Anna Daughn Falkingham, Saskatoon, (306) 343-6718; Ron Johnson, Saskatoon, (306) 343-0225 PRESIDENT; Isabelle Mills, Saskatoon, (306) 343-6916; Don Thompson, Saskatoon, (306) 373-3252; Hugh Woodcock, Aberdeen, (306) 253-4532; Barbara Duffield, Prince Albert, (306) 763-4103; Mary Frerichs, Saskatoon, (306) 382-4111 VICE-PRESIDENT; Pat Kjorsvik, Marshall, (306) 387-6843 SECRETARY; Dale Schiissler, Saskatoon, (306) 374-9046 TREASURER; Ken Wilson, Saskatoon, (306) 373-6590 MEMBER-AT-LARGE.
Ron Johnson, Saskatoon
Not long ago when a reader called to renew his subscription, he said he loved ACCENT. However, he added that muscle spasms are a real problem for him and for other disabled people and asked if we would include some information on it in ACCENT.
When we called Richard Bruno, director of the Post-Polio Service at Kessler Institute for Rehabilitation, Saddle-Brook, NJ for information, he was happy to talk about this problem. He is a clinical psychophysiologist which has to do with the relationship between what's going on in the brain and what the body is doing. "Psychophysiologists developed biofeedback to relax muscles when the brain isn't telling the spinal cord to turn muscles off." he said.
When Dr. Bruno was asked what causes muscle spasm, it became clear that there are muscle spasms and there is spasticity.
SPASMS & SPASTICITY?
"They're different kinds of things." Dr. Bruno said. "The muscle spasm is a local event in the muscle whereas spasticity is caused by the nerves in the spine telling the muscles to turn on. Spasticity occurs when the nerves are on their own doing what motor nerves do, which is make muscles contract. Spasticity will involve the muscles of the legs and the arms more than the muscles of the back and the neck. When somebody has spasticity, the muscle usually doesn't get hard like a rock. On the other hand, a muscle spasm is what causes the common muscle tension headache. When you feel the back of your neck and one of the muscles feels very tight and hard, that's a muscle spasm in the back of your neck making your head hurt." "Nobody really knows what causes muscle spasms or causes the muscles to contract and get hard for a long time."
WHAT CAUSES SPASTICITY?
"Spasticity is the result of a damaged spinal cord or damage to the brain. When this happens, the motor nerves will go off on their own, like unsupervised children. If there isn't a parent around to tell them to stop running around the room, that's exactly what they will do. Your brain is the parent of your muscles and motor nerves. Why aren't you dancing around the room right now? Your brain is telling you not to do that but to sit there and be quiet. When you cut the spinal cord or damage the brain, the brain is no longer able to tell the motor nerves to stop firing, therefore the muscles contract."
"A paraplegic's muscles might contract and relax and his/her leg might dance up and down. Someone who has had a stroke might have their arm contract because the biceps muscle in the arm that allows you to make a muscle will turn on and the arm will stick in that posture. Someone with MS may have painful muscle contractions that make limbs hard to move. These are all examples of the brain no longer telling motor nerves to stop muscles from contracting."
MUSCLE SPASMS & POLIO SURVIVORS?
"Polio survivors don't have spasticity because the damage they have is in the spinal cord to the nerves themselves that run the muscles. Polio survivors usually won't be able to make a given muscle contract at all. If you can't make the muscle contract, then you're not going to have spasticity because the nerves aren't there to tell the muscle to do anything at all."
"Polio survivors are plagued with the problem of muscle spasms. But the spasms are in muscles that were less affected by the polio. The muscle spasms are often compensatory mechanisms. Polio survivors who can't lift their arms will lift their shoulder to bring their hand up. Those muscles, over time, will keep contracting and contracting and become very tight, hard and painful. If you touch the muscles they feel like bone, they're actually that hard. If a polio person overuses the muscles that are getting weaker, this will cause the muscle to go into a short-term spasm that hurts tremendously (not all muscle spasms hurt though)."
DO SPASMS GET WORSE AS THE PERSON WITH A DISABILITY AGES?
"Again, it depends on the disability. If a polio person is getting weaker, more muscles are working harder to compensate for weakening muscles. They're going to have more muscle spasms and they're going to have more pain. Muscle spasms seem to almost be the number one cause of pain in polio people because the muscles are overworked, they're to weak to do what they used to do, but the polio person is still telling them to work."
"When we have patients slow down and start taking care of themselves, pacing their activities, and using assistive devices, the muscle spasms go away immediately and, thus, their pain goes away. That's almost the easiest post polio problem to treat."
"People who have a neurological disease which may be progressive, such as multiple sclerosis, their spasticity can get worse over time. People with a spinal cord injury sometimes develop what's called a tethered cord syndrome where the area of the spinal cord that is around the level of the lesion or below gets bound down to the local tissue which can actually cause local pain or more spasticity. So, again, it depends on what the condition is that is causing the underlying problem."
WHAT IS THE TREATMENT FOR MUSCLE SPASM/SPASTICITY?
"Spasticity can be treated with drugs like Baclofen(generic), or Lioresal which causes the nerves themselves to relax. If the nerves relax then they won't be telling the muscles to contract and the muscles can stop contracting."
"There are lots of things people have tried over the years for muscle spasms. Biofeedback is often very helpful, especially to teach polio survivors which muscles they need to turn off. Heat is often good (versus using ice) because the heat causes the muscle to relax locally. You can even inject local anesthetic into painful muscles which stops the muscle from being able to contract electrically."
"The Valium class of drugs are used for spasticity and muscle spasms to turn down motor nerves. But, long-term use of such drugs is not recommended for muscle spasm."
"One thing that is similar to muscle spasms are muscle cramps where people are awakened in the middle of the night with their toes pointing down to the bottom of the bed and their calf muscles contracting and hurting tremendously (also called a "charlie horse"). Polio people often get cramps at night and, and again, they're symptoms of overuse. The muscle itself is just being asked to do much more work than it can."
"There are chemical reasons why cramps happen. There's too little potassium or too much lactic acid, which is a by-product of muscle metabolism. So, if you rest the muscle often, the cramps will get better. That's true for daytime cramping especially. Often quinine (it's used to treat malaria) is prescribed for night-time cramping. The problem with quinine, especially for polio people, is that it can often cause your feet to swell."
Dr. Bruno is not only director of the Post Polio Service at Kessler, but has also done pain management since 1976.
"We see lots and lots of people with painful muscles from various causes," he said. "Actually, we've discovered something in the past year or so that nobody else has ever seen before. Polio survivors have a unique sleep abnormality. Their muscles contract randomly all over their body. When these folks are totally asleep, the biceps muscles will contract and their arm will move up and their toes will curl and then their thigh muscle will contract and their leg will kick out and their fingers will contract as if they're making a fist. All of this is going on while the person is asleep. Actually, when you put these people in a sleep laboratory, you see that the muscle contractions actually wake them up briefly, not unlike the problem with sleep apnea where people (and this is again true of polio survivors) wake up hundreds of times a night because they stop breathing, but they don't even know it."
"One patient we treated woke up 232 times a night as a result of these random muscle contractions. When he gets up in the morning, he feels like he hasn't slept; he's got a headache, he feels half asleep, but he has no idea he's not sleeping through the night."
"It turns out the lowest dose of antianxiety drugs like Zanex or Ativan stops the random muscle contractions during sleep. For some reason motor nerves are telling muscles to contract in different parts of the body. When you calm them down by giving them a Valium-like drug, they stop signalling contractions."
"If someone is not feeling rested or their spouse tells them they're dancing in bed all night, then they need to go back to their local doctor and report this because muscle contraction during sleep - as well as muscle spasms, spasticity and cramps -can be treated."
Dr. Richard Bruno is with the Post-Polio Service at the Kessler Institute for Rehabilitation, Saddle-Brook, NJ
The sixth International Post-Polio and Independent Living Conference took place in the USA in June 1994. This event now occurs every two years. The following notes are a brief attempt at summarizing 1994’s presentations as reported elsewhere.
Research theories have come and gone over the years, as ideas have arisen, been tested out and led on to further ideas. There are presently several general theories being explored, and it is possible that a sole cause of Post-Polio syndrome will not be identified, as it seems increasingly likely to be due to a combination of factors.
A central concept to all discussion of potential causes, however, is the matter of Denervation and Reinnervation. It is clear from medical studies that weak post-polio muscles show particular damage. Some of the nerves that operate the muscles (motor neurons) have been killed or weakened by the polio virus. The strands of muscle (muscle fibres) that they supply therefore have become either unable to function at all, or weakened. However, since damaged nerves are able to renew themselves, a constant process of denervation (loss of nerve supply to the muscle) and reinnervation (restoration of nerve supply to the muscle) occurs. Where a motor neuron has been killed, neighboring motor neurons can grow extra connections (axonal sprouting) and "take over" some of the dead motor neuron's muscle fibres, until it is operating up to three times the "normal" number of muscle fibres. The is called a giant motor unit. Giant motor units appear to be under great stress from the constant high rate of use and the denervation/reinnervation process, particularly as polio survivors age. These giant motor units are thought to be fragile and prone to degeneration; and additionally there may be problems where the nerves and muscles join (neuro-muscular junctions).
THE ‘FAILURE OF REINNERVATION’ THEORIES
Bruce R. Pachter, Phd, Neurophysiologist at New Your University Medical Centre did experiments on rats which disconnected half the nerves to the animal's leg muscle. Examination over the following nine months showed reinnervation by axonal sprouting occurring until at six months the damaged muscle appeared to have the same strength as undamaged muscle. At nine months the muscle's strength started to decline and the rats were killed. Subsequent examination of the damaged muscles showed they looked and responded like "old" rat muscles (an "old" rat being twenty to twenty four months of age.) The conclusion was that some late changes in post-polio muscles are like accelerated aging.
THE "CHRONIC OVERUSE DAMAGE" THEORIES
James Agre, PhD, University of Wisconsin, Madison, WI, did studies on responses to exercise amongst polio survivors.
Since there is a fine line for everyone between (strenghtening) maximum effort and over-use, it is important to clarify how post-polio patients can exercise to improve their health and fitness. It was found that polio survivors took a little longer to recover from a bout of exhausting exercise. Post-polio people with symptoms of LEP/PPS were weaker and showed evidence of greater initial polio involvement than polio survivors without symptoms. Over three years of study Dr. Agre's patients lost muscle strength only at normal age-related rates, and he concluded that some post-polio muscles can be strengthened by specifically designed programmes incorporating frequent rests.
Jacqueline Perry, MD, Rancho Los Amigo Medical Centre, Downey California, did bio-mechanical studies on post-polio patients with and without symptoms. Using special techniques to analyse movement in a laboratory (a Gait Laboratory) she discovered that post-polio people with LEP/PPS symptoms were using their muscles at close to their maximum strength on a continuous basis, when compared to post-polio patients without symptoms.
Anthony Windebank, MD Mayo clinic, Rochester, MN, did an epidemiological study and established that post-polio patients with new symptoms had experienced a more severe initial polio involvement than post-polio patients without new symptoms.
Dr. James Beasley, PhD, did work in the 1960’s that measured muscle strength in post-polio and non-polio patients. He showed that post-polio muscles that on manual testing seemed to be of normal strength, had in fact lost more than half their strength when measured in more detailed analytical ways. Manual muscle testing is not capable of distinguishing muscle weakness accurately. Thus many polio patients who thought they had completely recovered or were told by doctors and therapists that they had normal muscle strength, in fact had not. The conclusion was that only with properly balanced exercise and prudent restraint can polio survivors avoid symptoms of Post-Polio Syndrome.
THE "IMMUNOLOGICAL" THEORIES
1970’s studies investigated whether changes in the immune system could be triggering new weakness in polio survivors, but few abnormalities were found.
Mohammed K. Sharief, MB, ChB, and others in 1991 did a study of fluid from the spines of polio survivors with and without symptoms. It found differences between the two groups and concluded some virus activity could not be ruled out.
In April 1994, the New York Academy of Sciences and the National Institutes of Health jointly sponsored a three day meeting of the best international experts in their fields (of virology, neurophysiology and pathology). Some unexplainable abnormalities were identified in a few polio survivors. neurophysiology and pathology). Some unexplainable abnormalities were identified in a few polio survivors. The conclusion was that there was not sufficient evidence to decide whether changes in some patients' immune systems were significantly linked with post-polio syndrome symptoms.
THE "HORMONAL CHANGES’ THEORIES
Research has been done by Kaup R. Shetty, MD and D. Rudman, MD (deceased) at the Medical College of Wisconsin, Milwaukee. It identified low growth hormone levels in nine out of ten polio survivors with new symptoms, compared to normal levels in polio survivors without symptoms. In adults, growth hormone is important for the health of muscles and it may be essential for the metabolism of denervated/reinnervated polio muscles.
The "growth hormone arrest" was linked with early aging symptoms but unfortunately growth hormone replacement therapy has shown some dangerous side-effects and no clear benefits. The conclusion was that further studies would take place with post-polio syndrome sufferers who experience severe symptoms.
THE "ROLE OF STRESS" THEORIES
Richard Bruno, Phd, suggests that polio survivors are unusually susceptible to situational stress. Polio can damage the part of the brain responsible for the body's ability to co-ordinate arousal (waking, sleeping, alertness) and its hormonal reactions to stress. This part of the brain is called the Reticular Activating System (RAS).
The reduced capacity of the RAS to respond to ordinary daily stresses could be linked to unusual exhaustion and fatigue in post-polio syndrome. In addition, many polio survivors have always had to cope with the additional stresses of some disability from their initial illness. When new health problems occur, these stresses increase and may become linked with stress related to family and jobs. The conclusion was that too much stress is bad and polio survivors must take care to keep stress within healthy limits.
THE "NORMAL AGING PROCESSES" THEORIES
Growing older with the disabilities that some people are left with after polio, is challenging on its own. In the early 1980’s many professionals and survivors attributed all their difficulties to normal aging. As people get older, many changes in their bodies will occur even if they remain free of disease. Examples include, lessening breathing capacities, increasing blood pressure, cholesterol, weight, and blood sugar levels; stiffening joints.
However, in 1984 a study showed that people who have not had polio do not lose certain vital cells (Anterior Horn Cells) in their spinal cord until age 60, then they start to lose about 1% per year, so that at age 90 they have a 30% loss. This 30% loss on its own does not produce the weakness symptoms experienced by many polio survivors. Some new research indicates that polio survivors' anterior horn cells may have their life span shortened by increased stresses over many years (as described previously). The conclusion was that normal healthy aging alone cannot explain post-polio syndrome symptoms.
THE "LIFE COURSE PERSPECTIVE" THEORIES
This is the newer approach to the normal aging theories. With life expectancy now being into people’s late 70’s, everyone is more likely to experience new medical problems as they age. For people with problems arising from earlier polio, these additional health difficulties can compound existing ones.
Frederick D. Maynard, MD, University of Michigan, found that 35% of polio survivors had new medical problems unrelated to their polio. New illness or injury can result in inactivity which causes new weakness by upsetting the balance of denervated/reinnervated muscles. A post-polio person may also experience permanent loss of muscle function (Atrophy) or loss of heart-lung (Cardiovascular) fitness. Facing functional losses and symtoms (expecially for a second time) has psychological implications. New symptoms were linked with depression and a person's attitude to controlling the world around them. The conclusion was that the functional abilities of post-polio patients with weakness, are especially vulnerable as they age. This is because of the increasing likelihood that they will experience other medical problems which will have an exaggerated impact on fuction for them.
CANADIAN POST-POLIO RESEARCH
The Montreal Neurological Institute and Hospital, McGill University, McGill School of Physical and Occupational Therapy, and Montreal's Royal Victoria Hospital are collaborating on work with patients at the Neurological Hospital's large post-polio clinic.
Current projects include the following studies:
Creatinine Kinase (CK) is an enzyme found in muscle cells. Raised CK levels can be associated with muscle damage. Researchers aim to discover whether increased CK levels are consistently found in PPS patients.
Anticholinesterases help communication between nerves and muscles. Deficits in this communication may be linked with PPS fatigue. Researchers are finding that administering Anticholinesterases (e.g. pyridostigmine or Mestinon) may be useful in combating this disabling fatigue.
Additional research is being done on identifying risk factors for PPS; on the prevalence of fibromyalgia in post-polio patients; and on developing specialized electromyographic (EMG) tests of muscle function to assist in diagnosis.
Denis Hogan is with the newsletter Polio News from the Post-Polio Support Society, NZ (Inc)
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