Saturday, February 2, 2008

My experience with Polio and PPS

I contracted polio after being in Mercy Hospital in Bay City for jaundice in 1956. The day I was supposed to come home my mother tried dressing me and I couldn’t stand up. After running some tests they found I had polio also known as Infantile Paralysis. It was common for the polio virus to attack after the bodies defenses had been weakened by another illness. It is suspected that I contracted the virus after swimming at the beach in Caseville. Back then the sewers of a lot of homes were dumped into ditches and streams that ran into Lake Huron, and there were a lot of people with polio in the Caseville area. It affected both of my legs, my right arm and spine. I don’t have any memories of the leg braces but I do of the arm brace. It attached around my chest and held my arm up at a 45 degree angle, but the darn thing wouldn’t allow me to completely straighten my arm, so after regaining the use of my arm I was never again able to straighten it. I was sent home 7 months later with my arm still in that horrible arm brace. Before that brace I was left-handed but during my hospitalization, they would tie down my left arm and forced me to use my right hand.
Some of the things I don’t remember but was told after I got older were that my parents came to visit me 3-4 times a week. I guess my crying as they left used to really upset my mother, because my dad had asked me not to cry for a while after they left, but sometimes as they were leaving my mom could still hear me before they made it outside. Another thing was that my dad had brought me a box of my favorite candy, chocolate covered cherries, and after giving me some had put them in the cabinet beside my crib type bed for their next visit. The next time they came to visit I was sitting in a cage. The staff had put a barred top on my bed because I had gotten out of the crib and made a real mess eating all of those candies!!! My dad blew his stack and made them remove the top. Of course I had to promise not to get out of bed again, and that was the end of leaving any candy in my room. Also my room mate at the time was Danny Brown who had cerebral palsy. We would later become great friends in high school. They must have had a children’s rehab or play center because I do remember dragging my mother down the hall to this room that had all of the things you would find in a home but child sized, and I took her to the kitchen area and made her some tea. I sat her at the table and set it with cups and saucers and went to the sink and ran real water into a tea pot and put it on the stove, which didn’t work, and then poured us both a cup of play tea.

I was one of the lucky ones though. I could walk without support and was pretty much as normal as the next kid except for a slight limp in my left leg which is almost an inch shorter and a lack of stamina. This led to a whole lot of teasing especially after I started getting fat. As a child and teenager I led a very active life which included LOTS of walking. Walking to and from school, outback in the gravel pits and woods, down to the river, in all it was nothing to put in miles of walking daily. And of course I always was the last and everyone had to wait for me when I tired out and had to take a rest. And the only trouble I really had was leg pains usually in the evening that sent me to bed early. It didn’t take long for me to realize that this was the ONLY cure to make the aching stop.

I led a pretty normal life, got a job, got married, raised 3 children. Around the age of 30 I took a bad fall and screwed up my back. Herniated disks, pinched nerves, and muscle spasms started me on a new road to pain. Then at age 39 I had my first heart attack. Afterwards I began noticing unusual muscle weakness. My Dr. attributed it to medication and getting older and being overweight. And for the next 10 years he kept changing my meds and telling me to lose weight. I worked at a grain terminal in Saginaw and learned to compensate for my "old age" and chronic back pain. I rested more often, we did a lot of shoveling there, heavy lifting, climbing ladders up to 100ft. tall and a whole lot of walking. From 1976 to 1999 I worked up to 18 hours a day, 7 days a week in all kinds of weather.
Then I had another heart attack, and took longer to recover. I switched jobs at work and took one that was less physically demanding.
However I was getting weaker and more tired. And something new, my left leg started periodically to just quit on me. No pain or warning just like someone turning off a switch and right back on. I would be walking or standing and then I was on the ground. Now this worried me. I had heard rumors of PPS, but I thought I had too mild of a case to have to worry about that. And when my Dr. got through explaining to me that it was weight that was causing all of my problems and it was a pinched nerve, and it was only skinny malnourished people who got PPS what could I do. I tried losing weight. Pills, all types of diets, but it never worked for long. Then I started falling asleep at work in the afternoons and on the 48 mile drive home. I blamed it on the pain pills and muscle relaxants. I tried to get all of my physical work done in the morning because by lunch time I was all in. If I sat down for more than 2 minutes I was asleep.
Then came my last heart attack, June 9, 2003. After the angioplasty and stent placement I still had the discomfort and 3 weeks later was back in the hospital for another angioplasty and stent. But when I came to, I knew something was definitely wrong. I felt great weakness and discomfort like never before and my brain wasn't working right, I was having difficulty finding words and thought I was losing it.
I am sure everyone at the hospital did. In short order my cardiologist and the anesthesiologist, a neurosurgeon and the chief of staff were in the room and ordering tests, ekg, ct scan, doppler of my carotid arteries, brain scan, emg, and a whole host of blood tests. And worst of all, my cardiologist left the building without leaving orders for my much needed morphine for my back pain that I required whenever I spent anytime laying down. He gave it to me pre-surgery but forgot to leave orders for it post surgery. And they couldn’t contact him. I was soon in HELL. Laying on my back with a plastic tube running from my groin to my heart inside the artery and being told not to move or risk dying from a torn artery. And in the middle of the worst pain in my life, in walks the staff psychiatrist to evaluate me. I asked him to come back later but he insisted on asking me all sorts of questions.
Then my GUARDIAN ANGEL came into the room. She was an older woman in a wheelchair who introduced herself as a staff minister but was in the wrong room. I asked her to pray for me to get this FOOL out of my room. The psychiatrist then said he had enough information and left.
I asked her to stay when I noticed the stereotypic walking canes on the back of her wheelchair and asked her if she had polio and she said yes, PPS actually. Then a nurse came in with my morphine. I asked the minister to return later and she did. It was from her that I learned the most about Post Polio Syndrome and the physiatrist I later saw. We became fast friends and had many discussions over the next few days before I was sent home.
I later saw more Dr.s and was diagnosed with PPS and started my SSI disability paperwork. Then the depression set in as I realized my life would never be the same. It was very hard to be dependant on my wife to do all of the driving over 15 miles because I couldn’t keep my concentration and it was a physical and mental challenge that wore me out to the point of falling asleep. Not being able to walk very far or do anything physically demanding. Not being able to work. And maybe the worst of all, not being able to read books. For over 40 years I had a love of reading that was unquenchable, I read daily and many times had multiple books going at the same time. But after that last heart attack the “brain fog” just wouldn’t let me understand what I was reading even after multiple re-readings of the same paragraph. Living in daily pain and depression so bad I was contemplating suicide.
I was keeping a daily journal and writing down happenings and daily activities and pain scale. And one day after re-reading what I had been writing for the past year, I decided that it was so pathetic that I wasn’t going to write anymore. The birth of my first grandchild was a blessing that gave me a new will to live. Even though holding her caused a lot of physical pain sometimes, the good it did me was far more beneficial to my mental wellbeing. That and a new anti-depression drug put me in a better frame of mind and started me on the road of dealing with my limited abilities and a new look on life.
Oh I still have my bad days, and I miss my enthusiasm for my hobbies, but I will deal with that.
Another struggle is trying to keep my body from muscle atrophy. Not having the physical mobility or the ambition to do anything, makes it hard to keep from just sitting and vegetating. I had been doing aqua therapy for 6 months, about 3 times a week and it has done wonders for me. After a 2 month hold on going, I am looking forward to getting back in the heated pool.