 and he's a tricky one, this
dragon!He at first lets you think that maybe, just maybe, you have won the battle and that everything will be all right; but then, he waits 20 - 30 - 40 years or more and renews the attack! There are theories; but, no one knows actually why. What is known is that muscles which have functioned for years become slowly weaker and unable to function. Other problems may include: pain in the extremities, difficulties in breathing and swallowing, and intolerance to both heat and cold. This is what is known as "post polio syndrome." I can't say I really feared polio when I was growing up. Children don't internalize things that way; but, I knew that my father had one leg which was an inch shorter and a lot smaller than the other one. I knew, the family knew; but, it was a condition he had learned to hide from the rest of the world even if he could not afford special shoes. He had developed a way of walking on tip toe with that one leg so that any kind of limp was barely noticeable. I knew the reason for his condition was polio. I though of him as one of the "lucky ones." I had seen all the crippled children on the March of Dimes posters and on the telethons. Children in braces and iron lungs barely able to walk or even move. They were pitiful; there is no other word for it; and, back then they didn't mind trotting them out and saying "Look at this poor child.Won't you please help him?" Today such a thing would be considered degrading; but, at the time, it was an effective fund raising tool. A vaccine was found. I was vaccinated. They didn't require vaccinations of any kind back then to go to school; and, to be honest, my parents were not big ones for either going to a doctor or being vaccinated; but, I was vaccinated against polio within days of when the vaccine became available. There were some booster shots after that. Then some twenty years later, under a special set of circumstances, I took the Sabin oral vaccine. At first we just thought he was getting old. That's what the doctor's said too. Then there came along all the publicity and talk about alzheimer's; and, the doctor's decided that was why he could no longer walk and had difficulty swallowing, he was just forgetting how! By this time I knew better! Now I realize that alzheimer's does exist and that it is a serious problem for those who have it, for their families, and for this country; but, I also believe that it has become a kind of "catch-all" for a lot in the medical community who do not want to deal with the problems of the elderly. It is just all too easy to just say "He or she has alzheimer's; and, there isn't much we can do for that." Then you just let it go and leave it to the caregiver to manage the best he or she can. In my father's case, there was the added complication of polio and post polio syndrome; and, to all to many in today's medical profession polio is something from out of the dark ages! I have seen doctor's gawk in absolute stupification at my father's "polio leg." Some of them seem better able to understand that his problems were caused by Cardassian invaders from outer space than they are able to accept that it was just a homegrown monster that has been around for quite some time. Most of them don't even want to talk about post polio syndrome. They don't understand it. They don't want to talk about it. They don't want you to talk about it. Above all, they don't want you to talk about it. They want to do all the talking and you to do all the listening. They have all the answers; and, you know nothing, even though you have lived with this thing your entire life! The sad thing is I suspect that there are a lot of people out there who do not know what's wrong, or who are living with a false diagnosis, simply because they have never heard of post polio syndrome. They do not have access to the internet, coverage of pps is woefully inadequate in the national media, and their doctors sure as you know what don't tell them. It was about ten years ago that I happened to catch one of the very few mentions I have ever seen on television of post polio syndrome. It was just a short piece on a local news program; but, it all fit so perfectly! I knew; and, what is even more important, I understood! My father had always been so sensitive to cold. Even here in Florida, he was usually cold in winter and often in spring and fall. Only during the summer did he seem to find even a little relief. Our fuel bills were always very high. Many people complained of the heat in our home and some would not visit us on account of it. One winter my father got so cold he put a light bulb under the covers of his bed and the bed caught on fire! We had to buy a new bed; but, otherwise no damage done. Daddy hated heavy covers too and heavy clothing. They made him very uncomfortable. He said they "hurt." This, of course, made it even harder for him to keep warm! As muscles became weaker and more slack, he could no longer maintain the kind of balance that he had once managed with one leg so much smaller than the other. Soon he could no longer walk or stand even with someone helping him. So a lift was needed to move him from one place to another, usually from his bed to his wheelchair and back. This was a journey he made several times a day. One thing I always found very odd was how much easier it was for him to swallow lying down. Eventually it became impossible for him to eat or drink while sitting in his wheelchair. Whenever he tried to get anything in him that way, he could start coughing uncontrollably. So, I would have to give him food and liquids while he was lying down. This was complicated by the fact he could not drink from a straw. I became very good at just pouring it in and he became very good at swallowing it and not getting wet! Liquids were much harder for him to swallow than solids; but, solids had to be mushy because false teeth were too uncomfortable and often created sores on his sensitive skin. While he was younger, my father often had problems with his bowels just "letting go." For that reason, he wore special padded underpants under his bulky overalls and carried an extra pair of overalls with him in his pickup truck. Later on, his problem became just the opposite. He was often constipated and eventually his stomach just would not move at all without an enema. Giving an enema to someone who cannot stand poses problems; but, it can be done! Because he could not control his bladder either, Daddy wore a catheter all the time. "Depends" are expensive; but, work just fine for someone with a leakage; but, when there is absolutely no control whatsoever a catheter is required. There are basically two kinds, internal and external. The internal male catheter goes up the penis into the bladder where a balloon is inflated to stop it from slipping out. This sounds very unpleasant; but, my father found them very comfortable. The problem is that wearing this kind of catheter for very long can lead to infections causing a need to stay on antibiotics all the time which can cause a host of other problems. In my father's case, antibiotics caused him to vomit and this can be a real problem for someone who cannot raise up out of bed. The nurses, mostly women, like to call external catheters condom catheters. The doctors, mostly men, hate that term. They prefer to say either external or Texas catheter. I always found that amusing! External catheters do, in fact, look and fit like condoms. They must be changed at least once a day and they keep slipping off. To remedy my father's slippage problem I created something like the sanitary belts women used to wear. The belt, made out of elastic, fit around his waist and attached to four smaller pieces of elastic which I would then sew to the catheter; but, first I would have to run a piece of waterproof tape around the top of the catheter because the thread would tear the catheter if I didn't. I also had to make sure the tape was about an half inch away from the base of the penis or else it would create a very ugly sore. Was this a bother? Definitely; but, it was less of a bother than it would have been if the catheter came off every time he "voided." Now some of you are probably thinking that this is all very unpleasant stuff; and, wondering "Just why is she going into all that mess." Well, someone has to go into all that mess because these sort of problems are the kind of things a caregiver runs into and not just caring for someone with pps. Similar problems can be encountered when dealing with all sorts of disabilities; and, how are we to find the best ways of dealing with these things unless we discuss them? How else am I to convey to you, the reader, what polio and post polio syndrome meant to my father and his life as well as my life without giving you some real details, something more tangible than there was pain and a lot of inconvenience. I don't think it was related to the polio, it was just because he was getting so much older that Daddy's hearing began to fail. It was necessary to talk to him slowly and carefully; and, it was also very important to let him know that you were talking to him so he could focus in on what you were saying; otherwise, his hearing would not naturally separate your voice from background noise. Because he could not hear very well, he soon lost the ability to talk in a way which was understandable to most people. Most people didn't take the time or make the effort to understand either. If they had, they would have realized he wasn't forgettin' anything. *** *** *** Despite his problems, Daddy still continued to enjoy life up til the end. He followed the news. He liked to go to the store. He had a not so little stuffed animal collection; and, was always on the lookout for that one more little stuffed critter he didn't have. During the day, he ran a little candy store from his wheelchair; but, gave away more candy than he ever sold! A TRIBUTE TO MY PARENTS |