SAPP Saskatchewan Awareness of Post Polio Society Inc.


DALE'S STORY


I was born in 1951 in southern Saskatchewan to farming parents. I was their only son and my two older sisters thought a baby boy around the farm was kind of neat. Amidst all the jubilation, there hung over the family, neighbours, town, province and country, a fear of the latest epidemic of poliomyelitis. And sure enough in 1952, while still a baby, I contracted the dreaded virus.

My oldest sister (12 at the time), said I was an energetic, tireless, baby. I was always on the run where ever I went. Our dad would always go to town early in the morning to get the mail and check out coffee row with its latest gossip. At 18 months I had already figured out the routine and was an eager participant in the morning festivities. Each morning when my sister came to get me out of my crib, she would find me standing at the edge rail, champing at the bit, to get up and get ready to go to town with dad. One morning I was cranky and didn't get out of bed in time to go with dad ( it seemed at the time I was coming down with a cold). The next morning when my sister came to get me up, I laid there crying in pain, not moving. Mom and dad rushed me into the local doctor whose initial diagnosis was polio. I was referred to the Red Cross Ward in the General Hospital in Regina and had an appointment that afternoon. The doctors informed my parents I was paralyzed from the waist down and would never walk again.

My sisters were sent to school that morning and my oldest sister recalls: "I was in class when the principal and my dad came to the classroom to get me. I remember that daddy looked so sad as he told me that Dale was really sick and they were going to Regina to see a special doctor. My little sister and I were to go home. Our home and family was put into quarantine for two weeks. Being a lover of school, I missed my friends, classes and playing. It was a year before I seen my dear little brother again. Everyone, in our family, friends, and people in the district were devastated by this horrible disease as it struck down another young one."

My first memory of life was when I was very young. My mom and dad were leaving me behind again and I felt very sad. Behind me was the sound of a crying child who I went to comfort after my parents had disappeared from sight. There were many cribs filled with sick children in this large room and it wasn't until many years later that I came to fully understand my first recollections. Of course, I know now that after contracting polio, the next couple of years were mostly spent in the Red Cross Ward of the Regina General Hospital.

My parents finally took me home to stay and the next few years were filled with wheelchairs, body braces, crutches and any other paraphernalia that was used at the time. Grasping at straws, my parents took me to a masseur, who was doing wonderful things for the people in the Gravelbourg area. He threw away the braces and started me on an exercise and stretching program as he felt that all I needed to walk was usable strengthened muscles. At my next appointment in Regina, I walked into the doctor's office under my own power without the use of crutches or any other aid, but still wearing the braces. It was hailed as a miraculous recovery and they promptly praised their course of treatment as being successful (they were never told about the masseur).

It was now time for the next phase of treatment - surgery. The doctors were convinced this was the way to improve on the gains that had been made up to now. This was a very difficult decision for my parents as the masseur told them he was against any kind of surgery for me and they honoured his opinion highly. He told them the day a knife touched me, he would never touch me again. He has been true to his promise to this day. So on with the surgery. There was the shortening, the lengthening, the snipping and tucking. There were muscle transplants, bone surgeries and a knee manufacture. A child should not have to endure such things. A couple of the operations helped to alleviate some walking discomfort, but the rest were a dismal failure. I always try to remember that it was not the fault of the medical profession. They were doing all they could to combat a very nasty disease of which they knew very little about at the time.

I never suffered the trauma of polio. I was a baby when I contracted the virus so I never had to live with the changes and readjustments that a lot of older children and adults had to make. I guess you could say that from my point of view, I never suffered the disease, I was just me and whatever circumstances shaped my life were just normal. It may seem twisted, but who I am, and how I am, is all that there ever was and is. The limp is just part of me.

I grew up in the tumultuous 1960's and finished school. In 1971 I married Dianne and we finally settled in Saskatoon and raised our two boys. Life was not without its trials and tribulations but all-in-all I'd say we survived without to many permanent scars.

It was in the Mid 1980's when the first problems started to occur. I couldn't say for sure, but it seemed that I was having a few problems from time-to-time with some of my more physically demanding work. Then came my first bout of non-explainable back muscle pain. The doctors were not surprised as "look at the way you walk". Then came some knee pain and my first injury from just falling down for no reason. Around this time there was an article in the Reader's Digest about a new phenomenon they were calling post-polio syndrome. The article mentioned different symptoms which appeared to be common with people with this condition. Since I was experiencing some of these symptoms, my interest was piqued. In 1986, after one of my falls, my doctor sent me to get checked out with the specialists at University Hospital. This being a teaching hospital, I figured that while I was there I could find out more about this post-polio thing. I met with leaders in the field and a herd of med students. Not one of these people had even heard of post-polio syndrome let alone what to do about it. After my appointment, one young student stayed to talk to me about it as I knew more about PPS than he did. So it began.

My body was letting me down and I was not taking it very well. I didn't know what was happening to me and I didn't believe that I was wearing out from old age or arthritis as I was being told (I was only in my mid thirties for cripes sake). I was trying to find more information on the Reader's Digest article from anywhere and anybody. A frustration was starting to settle in that something was happening to me and that nobody out there knew anything about it and that nothing could be done to stop it. Finally, about a year later, my next door neighbour phoned all excited to tell me they just heard some woman on the radio talking about post-polio syndrome and they wrote down the number for me to call for more information.

The woman's name was Sybil and she was gathering names to get a support group started. She told me there was a meeting on Monday and invited me out. There I met this small group of people wanting to get some information on a common problem. And there was information - lots of it!! That was one of the first meetings of what is now one of many well established support groups world wide. And for that support I thank you one and all.

Now I knew what was happening to me and that people were working vigorously to solve the riddle of post-polio syndrome. In Edmonton, for example, there was a Dr. Feldman who had done a lot of research into it and was having significant success in formulating a treatment plan for it. Now I knew that help was available any time I needed it so I did the logical thing, I put it off. Can you imagine the frustration and fear and time spent to find this guy then - procrastinate.

As time progressed to 1994, I found that I was becoming more inactive due to pain, weakness, fatigue, weight gain and depression from unemployment. Then it happened. I found my motivation. We have all fallen at some time or another and hurt ourselves, but this time I knew right away, it was different.

March 9, 1994. This is a date I will soon not forget. It marks the beginning of a new road to travel. This is the road I had been looking for all these years and now my journey was about to begin.

As I was falling I could hear the bones breaking and the ligaments popping. Of course, it was my good foot that was coming apart. I stayed on the floor because I was unable to get into the chair without the use of my right leg, while my son calls for an ambulance. Finally it is confirmed that I am going to be laid up for a few months. That night in the hospital there was one thought repeatedly going around in my mind - "Is this the BIG ONE that is going to put me in the chair forever?". The next day I am sent down to physiotherapy and occupational therapy before I am released and it is now that I find out just how difficult the next few months will be. After some jockeying around, I get home to let the healing process begin.

We realized that a major contributing factor to the fall was an excess 60 pounds I was carrying around and that it had to go. We also realized that if some sort of exercise program was not put in place, I probably would never get out of the chair (I would atrophy out of existence). So it was cut the fat, call the physio and sit and wait to heal. We also decided it was time to seek out some of that professional assistance I had been seeking for years and we called Dr. Feldman's office in Edmonton. My personal doctor gave the needed referral and an appointment was granted.

I was weak before I fell and I was a lot weaker now that I spent some 4 months in the wheelchair. With determination and work, I managed to claw my way back to just using a cane as an aid by the time I went to see Dr. Feldman. The day arrives and it is time to go to his office. I must admit I didn't know what to expect and I was so nervous I had butterflies the size of bats.

Dianne and I sat down in his office and had a nice chat about what symptoms I thought I was having and how long they had been going on. We then went into the EMG lab to let the science begin. I have never had an EMG done before so the process of inserting probes into muscles was a little disconcerting at best. It wasn't long, the nervousness passed, and the process of distinguishing normal muscles from incomplete recovery muscles from post-polio muscles became easy to determine. He then did a complete set of muscle strength tests and back to his office for the verdict. He confirmed there was some post-polio occurring and that there was a very good chance if we set up a custom designed exercise routine at the clinic, some improvement should be noted. We also found some normal muscles that had basically just been sitting there dormant (the lazy beggers) that we could strengthen up and I could use to restructure my walk. In my case he indicated there was a long way to go to get to a maintenance level and a program of three to four months would be needed. Another part of the treatment would be to moderate my lifestyle to avoid both general and muscle fatigue. I was booked in a couple of months later.

The first day arrives. I am met by Wendy (the physiotherapist) and we go through questions and answers and then a complete set of muscle strength tests. We are going to work on eleven groups of muscles and I can see she is confident there will be some improvement. I, on the other hand, am the perpetual cynic.

The first real session begins and it turns out that some muscles are so weak they need to be hung in slings in order to exercise them. I feel kind of weird. Maybe there is a certain realization for the first time in my life of the extent of my frailty, and I realize that my recovery and the rest of my life are not going to be easy to swallow.

At the end of the first month, I reflect back and realize I can notice the difference in strength, mobility, walking, and stamina. But there is a long way to go. Six weeks into the program, I walk into the hospital unaided. I left the cane in the car. Boy it's nice to walk again! Some of the joint-pain I was experiencing before is now starting to subside as some of those joints are being supported by stronger muscles. This, too, is not a bad sensation.

After four months you can see that there is a definite improvement, and a reality sets in that after all the work there are some muscles that are only moving a half pound in slings. This whole experience (time and time again) continues to show me just how frail my body really is and, once again, I am reminded about how far I've come. I think that mentally, up to a few months previous, I honestly did not believe that I had a disability. I felt that any disability was only in the eyes of other people and that I was really normal. I guess for me, I was normal, but now all the frailties and shortcomings are being brought out into the open for me to see. I know I am just supposed to accept this (because this is what we do) but it is like being injured or diseased for the first time. I think I am finally starting to understand the feelings of polio survivors who contracted the disease as older children or adults. And just maybe, I am, for the first time in my life, coming to terms with poliomyelitis.

Now comes the hard part. MAINTENANCE. Now that I have all this improvement, one has to keep up the good fight, as they say.

After three years on maintenance I've come to see just how important it is. I find that it really isn't that difficult to comply with the program. Full application of my type A personality will always create generous amounts of guilt when "skipping" exercises. It has been a learning process as errors are made and minor setbacks occur due to illness or extended holiday, etc. Overall, though, my general strength has continued to increase especially in the normal muscles that we initially found.

There is another side to this as well. Once again I have had to accept certain realizations about post polio syndrome. I always knew this, but never accepted the fact, that post polio syndrome is incurable and the best I could hope for is to slow the decline of my muscle function. I feel that I have accomplished this. Without the exercise program I'm sure I would have been in a chair full time long ago. As it turns out, in order to utilize my newly strengthened muscles, I now use two canes to walk.

I bought a wheelchair for longer distances and to save energy whenever possible. Buying my first wheelchair was quite an experience. Some of those negative feelings like "giving up" or "it's over" or "what's the point" came rushing in. It took a while to overcome these feelings, but knowing that I didn't need the chair full-time made acceptance easier, and that the chair was nothing more than another tool to help me get around.

The hardest realization was having to switch to two canes so that I could walk comfortably and without pain. This was a permanent step in the decline process and not an easy one to swallow. I knew that two canes would prolong my walking and take advantage of my new muscles, but it was still very difficult to accept on a basic level.

I know that as time passes, I will have many more realizations to come to terms with. The challenge will be to accept them in a positive way and carry on with the rest of my life with the knowledge I've done the best I could with what I have.
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