SAPP Saskatchewan Awareness of Post Polio Society Inc.


MASTHEAD

ISSUE #29 MARCH 1999


President's Message

This April 17th we are recognizing our 10th Anniversary since incorporation. A celebration is being programmed along with our Annual General Meeting. Our speakers will bring us information in relation to what is available to Saskatchewan polio survivors. Registration will be $10.00 for the morning and includes the speaker's presentation, a continental Breakfast, and a Soup & Sandwich Lunch. Hope to see you there.

Your Tax deductible Membership fees are now past due. Members in good standing receive the "SAPPLING'S" at no cost.

We still have 49 memberships from last year still not renewed for 1999. Remember, only fully paid memberships registered(as of April 16, 1999) in accordance to Section 10.05 of the Bylaws will be eligible to vote at the AGM..

Memberships are important to any organization, from deriving a voters list to creating a registry of active members. Membership numbers are used when making presentations in the gathering of operational funds, or for funding of projects such as PPS2000.

Your membership is important to us, you are important to us. Why did you decide not to renew yours...or have you just put it off?

Saskatchewan and Alberta PPS Societies are in the planning stages of "PPS2000 The Millennium of Hope" conference for September of the year 2000. The location is Moose Jaw's Temple Gardens Mineral Spa! There is a great deal of preparation involved with many volunteers required. If you can help in this area give us a call.

Ron Johnson, President

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A Family Affair: The Impact of Post-Polio on Family Relationships

One of the difficulties of being in a relationship with a person who has a chronic illness is the belief that we are alone. Everything is directed toward the person with the chronic illness and while that is fair enough, it is important to remember that the partner is also having to make adjustments to the illness.

In today's discussion I am going to outline my situation when my partner, Dr. Mavis Matheson, began having problems with post-polio, and how we managed our relationship as her post-polio progressed.

Mavis and I met in Regina as interns in 1985. Early in our relationship she mentioned she had had polio and had recovered. She led an active life, had swum competitively and enjoyed hiking and skiing-all the things that I enjoy doing. She hadn't yet heard of post-polio syndrome, so it never occurred to her that she might experience problems in the future.

We had two children and worked together at the same clinic for five years. We were traveling and enjoying life together-things were working pretty well. She was one of those active, Type A people-always doing five things at the same time.

In 1991 we decided to form a clinic of our own. This required a lot of organizing and Mavis did all of the detail work. she was finding herself increasingly tired, needing to sleep more and becoming irritable. I was also becoming irritable and we found ourselves pulling away from each other. We thought the changes in our relationship were due to the stress of setting up the clinic and expected things to right themselves when we opened. Things did settled down. We shared the practice, I was working 3 days a week and Mavis worked 2-1/2 days a week. This gave us more time with each other and the children.

In early 1993,1 found Mavis becoming emotionally distant. She was tired, going to bed more frequently and having more aches and pains. She was limping more and found herself spending the weekends recovering from the work week. Over the spring her symptoms got worse. Mavis began reading about post-polio syndrome and quickly realized that what she was reading was describing what she was experiencing. Her family doctor was not helpful as she had no familiarity with post-polio.

Mavis knew she had to start making some changes in her life. She cut out a half hour from each work day and, rather than running to work, started using her car. She found that she was ending the day in better spirits but was uncertain whether she was going to be able to get going the next day.

Things came to a head in 1993 when I got a call from the receptionist at the clinic saying that Mavis was taking medications from the drug cupboard. I cursed myself for not realizing that things were getting so bad. I was in denial and not paying enough attention to the realities of Mavis' illness.

We reorganized our responsibilities at the clinic, Mavis took some time off and I began to work full time. she did a time/energy study while she was at home and found that she was taking over 300 steps a day-while she was trying to cut down and rest. We lived in a four level split with the bathroom on one level and the kitchen on another. I realized that we needed to move to a one level home.

During one short month we went from having an equal relationship working together, to Mavis not working, me working full time and the family having to change our home. We also had to try to explain what was happening to the children who were 3 & 6 at the time.

As time went on, Mavis found that she was able to do less. She was not recovering and was becoming increasingly fatigued, even with her modified schedule. She began to get more depressed. I was becoming stressed and irritable as well and did not know what to do to make things better. I found myself staying up later and letting myself get more fatigued, thinking-if she's tired, I should be tired too. It's not very rational but when people are under stress they're not always rational.

Eventually Mavis insisted that I seek counseling. This was useful because when I was growing up my mother suffered from severe depression. It was like living with a chronic illness. There were times when I would come home and not know what situation I would be facing. When I left home I figured I had left the chronic illness and not have to deal with it again. Now here I was in the same situation only it wasn't going to be a couple of years and I would be able to leave. That was very hard to deal with.

Our situation continued to deteriorate throughout the fall and just before Christmas Mavis went into the hospital because of other health concerns perhaps ALS or Multiple Sclerosis. She was in the hospital for a week and had all the tests done. The doctors said "this is just a psychosomatic thing". By that time I had read enough, knew enough and observed Mavis enough to know that this was not the case. Mavis was depressed and I had to support her through that psychosomatic nonsense.

In January I started to keep a journal of my feelings, especially the feelings you don't want to share with your spouse. You don't want to tell them that you are tired of dealing with the problems, that you are tired of not being able to do things, and you are angry at them. It's not their fault but those feelings are still there and the journal provided an important outlet.

Mavis went to see Dr. Rubin Feldman in Edmonton. He did a few simple tests and diagnosed her a classic case of PPS. He counseled her about changes she would need to make to maintain her health. She learned that many of the lifestyle changes we had gone through already were the things that she needed.

While she was in Edmonton I continued my journal, exploring my goals and values. I realized that the things that I found important in my life were still available to me in our relationship. It was important to me to have challenges, to grow personally and to have satisfaction. Our relationship provided a situation where I could have all of this. I didn't have to run away to be fulfilled.

It was also at this time that I realized one of the things Mavis was working through was the fear that she was going to be abandoned, that I was going to leave her. I found that the reason I wasn't running away was that I was meeting my needs in the relationship. The realization that Mavis felt that I might run away gave me a chance to show my commitment to the relationship. We hadn't married yet and I thought this was an appropriate time to propose to her. This was an important step in her realization that I was not going to leave the relationship.

Things were still unsettled though and we both needed a lot of separate time. Mavis needed time to come to terms with herself and to develop ways to rest and get her energy back. I needed time for myself to come to terms with what was happening with her, to grieve through the losses and to get comfortable with our recent changes.

In May 1994 things came to a head. Mavis got so tired and so distressed that she checked herself into the hospital. While in the hospital, she developed a routine of sleeping in the afternoons and resting and she felt much better. It was at this time I realized that either this relationship is going to work or it's not. Interestingly enough, while Mavis was in the hospital she had come to the same conclusion. We started settling into the routines of a more regular relationship. We discovered that there were ways of traveling with a disability. We discovered there are ways to conserve energy. We got a housekeeper. We found through trial and error that we were able to build our relationship again. We realized that we had some losses but there were new challenges that keep it worthwhile and exciting.

I have read many books about family relationships and chronic illness and through them, have learned some very good advice. Be aware of your attitudes about chronic illness. If you have had previous exposure to chronic illness, there may have been some very positive or really negative events which could colour your perception and your relationship. My previous exposure had been a very negative experience and I assumed that the current situation would be negative as well.

It is useful to be in the present and not dwell on what might happen tomorrow or grieve about things that have changed. Instead, concentrate on what is happening today. Worry about tomorrow tomorrow. Getting worked up about things that might happen is a big waste of energy. Know your values and goals and be honest with yourself.

Take ownership. Acknowledge the situation and acknowledge that you want to be in the relationship.

It is also important to maintain boundaries and give yourself some separation. I live with an illness but it is not my illness. I am affected by it but I don't have to suffer from it. I can do things that I enjoy doing without having to feel guilty that my spouse is not able to do them. This separation gives me the energy to come home and do things together and deal with the stressful parts of the relationship when they arise.

All of these things are factors in taking care of yourself and your relationship. If you don't take care of yourself, you probably won't be helpful to your spouse. Sometimes you might need to acknowledge that at least things aren't getting worse and might even improve. Occasionally Mavis and I find there is another loss we did not expect. We find ways to adapt and get around the hurdle. We have found that our relationship is working because we've been through this challenge together. We each had to work on separate parts and were able to use the things that we learned to work together.

Dr. Adam Gruszczynski

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SPECIALLY EQUIPPED VEHICLES FOR PERSONS WITH DISABILITIES

(from GST/PST News, Winter, 1998)

As announced on April 3, 1998, the Minister of Finance has proposed that, where a person purchases a new motor vehicle that has been especially equipped or adapted for use by an individual requiring the use of a wheelchair, the person will be entitled to a rebate equal to the GST/PST paid or payable on the portion of the purchase price of the vehicle that is reasonably attributable to the special features.

On August 7, 1998, the Minister released further details and draft legislation relating to the rebate. The proposed rebate has been expanded to include vehicles equipped with auxiliary driving controls that facilitate the operation of the vehicle by individuals with disabilities, and used vehicles that have been newly modified with auxiliary driving controls or to accommodate the transportation of individuals using wheelchairs. Special treatment for leases of qualifying vehicles has also been added.

The proposal also includes a mechanism to allow a GST/PST-registered supplier to pay or credit the amount of the rebate to the customer and claim an equivalent deduction in determining net tax. This would eliminate the requirement for the purchaser to pay the GST/PST at the point of sale and later apply for a refund.

In the case of leases, it has been proposed that where a first lease is entered into for a qualifying vehicle, the portion of the lease payment that is identified in writing as reasonably being attributed to the special features will not be subject to the GST/PST. This would continue to apply to subsequent variations to the lease between the same lessee and lessor. When the lessee exercises an option to purchase the vehicle, the purchase will be treated in the same manner as the purchases discussed above. Rebate applications must be filed with the Department within four years after the tax became payable on the sale of the vehicle.

These measures are intended to apply to sales in Canada of vehicles for which any consideration becomes due after April 3, 1998, or is paid after that day without having become due. The measures also apply to the tax payable on any importation, or bringing into an HST participating province, or a qualifying motor vehicle after April 3, 1998, and to first leases (including option to purchase contained in the lease) where the lease is entered into after April 3, 1998. For further information, please contact your local tax services office.

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MY POST POLIO LUNGS

(from Polio PostScrips of Nevada)

OXYGEN THERAPY. WHEN DOES IT DO A BODY GOOD?

The air we breathe contains approximately 21% oxygen and a lot of other stuff not all necessarily good for or needed by us. However, this concentration of oxygen is what healthy individuals require to keep blood oxygen levels saturated greater than 95%. The addition of extra oxygen at this point has no advantage and having blood oxygen saturation greater than 100% for extended periods of time can cause oxygen toxicity and permanent damage to certain organs in the body. It needs to be prescribed by a licensed physician. More is not always better and like other drugs it can be harmful and even lethal if administered incorrectly to some individuals.

Oxygen is the drug of choice to treat hypoxemia. Hypoxemia means you have inadequate oxygen levels in your blood. Many things can cause this. Blood oxygen levels can be determined several ways. The two most common procedures are:

1.Arterial Blood Gas- 1-2 cc's of blood is drawn from an artery in the wrist. Performed electively, this is done while you are awake and sitting in the laboratory. The oxygen levels reflect what is happening at this time.

2.Pulse Oximeter - measures the percentage saturation of blood using probe or clip on the finger or ear. It is often used to assess oxygen levels while exercising or sleeping. Blood oxygen levels can change drastically from normal when awake and resting, to abnormal when asleep and lying down.

Hypoxemia can be caused by some of the following problems:

1. The brain is not giving a regular signal to breathe so reduced gas exchange occurs. This is rare and most often seen in central apnea or variations of central apnea called "chyene stokes breathing." Low flow oxygen is often effective in treating this disorder.

2. The lungs have a reduced working area from a restrictive lung disorder and so gas exchange is reduced.. Additional oxygen in someone with severe kyphoscoliosis, for example, often improves shortness of breath and hypoxemia.

3. The air passage anywhere from the nose to the lungs is partially or fully obstructed in specific situations. This commonly occurs in obstructive sleep apnea. When lying down and sleeping, there is inadequate gas exchange because air cannot get to the lungs because of intermittent obstruction in the throat repeatedly throughout the night. However, one of the most effective treatments is to splint the airway open using air pressure that is applied through a mask over the nose attached to a positive pressure machine. Oxygen is not usually required to treat this cause of hypoxemia. Opening the air passage so the gas exchange can occur often solves the problem.

4.The lungs themselves are damaged or have disease and cannot provide adequate gas exchange. The destruction of lung tissue causes inadequate gas exchange. The addition of oxygen will increase the overall concentration which helps increase blood oxygen levels.

There are many other causes for hypoxemia, however these are the most common ones for underventilation.

Darlene Steljes, RRT

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INTERNATIONAL POLIO CONFERENCE IN JENA, GERMANY

(reprinted from Polio Quebec - winter 1999)

I recently had the pleasure of attending the International Polio Conference in Jena Germany. The conference was organized by Bundesverband Poliomyelitis e.V. (German Polio Association) with the help of Dr. G. Zwacka, and was held at the University in Jena on October 30 and 31, 1998. Lectures were given by researchers/health professionals from many countries. The lecturers on October 30 included Dr. B. Stuck (Germany), Dr. M. Havlova (Czech Republic), Dr. F. Lonnberg (Denmark), Dr. A. Sandberg, (Sweden), Dr. D. StegeIllan (Germany), Drs. Anders and Scholle (Germany), Dr. J. Agre (U.S.A.), Dr. Tesch (Germany). Ms. C. Buschbeck (Germany), Dr. B. Bocker (Germany), Dr. B. Meister (Germany), Dr. S. Schumacher Germany ), G. Zwacka (Germany), Dr. Steinfeldt (Germany), and myself.

I will briefly summarize a few of the presentations. Dr. Sandberg presented data which indicated that post-polio motor splits (a nerve cell and all the muscle fibers that it supports or innervates) increase over time to a reinnervation ratio of approximately 20 times normal (by macro-EMG criteria, which is a special EMG technique which most accurately estimates sizes of motor units). After reaching this maximum size, it appears that the motor units become smaller over time. There also appears to be no correlation between motor unit size and muscle force. He suggested that all post-polio patients have either macro-EMG or conventional EMG testing to assess the degree of polio involvement and to look for other possible neurologic disorders.

Dr. Stegeman discussed a technique of motor unit size estimation that does not involve needle insertion (which is necessary with macro-EMG), but only surface EMG techniques. He has found that surface EMG estimation of motor unit size is of similar accuracy to macro-EMG estimation of motor unit size.

Drs. Anders and Scholle discussed the potential use of surface EMG to identify fatigue behavior of respiratory muscles in post-polio patients based on their results in three patients.

Dr. Havlova has been assessing the possibility that the immunologic system contributes to or causes post-polio syndrome. She has found that in 12 of 28 post-polio patients, antibody titers to poliovirus 1 were increased. An increase in antibody titers did not always correlate with the presence of post-polio syndrome. Because of these findings, she has been evaluating the usefulness of suppressor transfer factors in the treatment or post-polio syndrome patients. Thus far, approximately 32 patients have been treated in open label trials, and some improvement in symptoms occurred, with return of symptoms after discontinuation of treatment.

Dr. Agre presented a lecture on the rationale for the treatment of new fatigue in post-polio patients. He presented prospectively acquired data which indicate that loss of strength in "stable post-polio patients" (those indicating that they are stable) is similar to that observed in ' unstable post-polio patients" (those complaining of new symptoms) over time. His studies have found that post-polio muscles have a greater work capacity if allowed to take regular rest periods during a period of activity. He has also found that unstable post-polio patients reported that it took them (subjectively) three times longer to recover following fatiguing exercise than stable post-polio patients.

Dr. Tesch reported the results of a randomized, multi-center (three-center), placebo-controlled study of carnitine in post-polio syndrome. Carnitine is a substance normally ingested in food and necessary for mammalian energy metabolism (primarily in muscle). This study was initiated because of patient reports of improvement in symptoms with the medication. Thirty patients received placebo and thirty patients received carnitine for a period of two months. Outcome measures included strength, distance of ambulation, subjective fatigue, subjective weakness, and subjective pain. The investigators found that both groups of patients experienced an improvement, but that there was no difference between groups. However they are still looking into the possibility that the carnitine may be useful in a select group of post-polio syndrome patients.

In summary, much interesting information was presented at the Conference in Jena, with some new insights into the possible cause of post-polio syndrome. It appears that post-polio syndrome is likely caused by a combination of slowly progressive motor neuron drop-out, and distal degeneration of motor units after they reach a certain maximal size. Motor units may enlarge to this certain maximal size to compensate for motor neuron loss, and then undergo degeneration. The possible role of immunologic factors in the etiology of post-polio syndrome is still not clear. Unfortunately, there is still no well-accepted and well-proven treatment for post-polio syndrome, although at least two multi-center, placebo-controlled studies of possible treatments have now been completed. More studies need to be conducted on potential treatments. Despite this, it is important to note that there is a management for post-polio syndrome and many patients can experience improvement with an individualized management programs

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