Mike's Polio Story as inspired by reading Jann’s detailed remembrances are at the bottom. Before you read my story, read Jann’s Story since that is what inspired me to share my story and to share with other Polio Survivors some of those memories and experiences we all have had due to Polio. There is a tremendous bond with all Polio survivors although we have met very few as we traveled through the years. Twice chosen, the Polio of old is now Post Polio Syndrome. Jann’s Story at the bottom of the page.
Our two travels Jann Hartman and mine, down the Post Polio Road are so similar that it has to be documented somewhere that these are the characteristic of most all Polio Survivors. I have never met Jann but through her one e-mail and a visit to her web site, I feel like I have known her since 1953. I have often wondered about many of the kids that were affected by polio or were in iron lungs, many in iron lungs did not make it but Jann has searched out a few heart wrenching and inspiring chapters in the lives of Iron Lung Survivors.
Click on the links for her findings.
Additional resources from her web site: Iron Lung Survivors
Additional resources from her site on nutrition for the Post Polio Survivor and others: International Polio Network
Mike Dolliver born 1944 - Detroit, Michigan
Chosen to have Polio around 1950-51
Graduated Waterford Kettering High School in
Drayton Plains, Michigan in 1963
Left Michigan in 1963-64 Now living in Fort Lauderdale, Florida
Hitchhiked around the US from late 63-65, early 66 too.
Married for 39-40 years to my wonderful and gorgeous wife Sandy with three great daughters and seven grand kids. Three dogs, three cats, and my wife has a whole bunch of Koi and Fancy Goldfish, which I intend to cook some day. (The fish not the other pets!)
My wife does upholstery and manufactures purses and other hand made items.
http://www.upholsterylady.com and http://www.apursenality.com
Once, polio was a disease that struck fear into the hearts of parents as it swiftly and suddenly paralyzed and killed their children. By the peak of the U.S. polio epidemic in the 1940s and 1950s, more than 650,000 had contracted the disease, including Franklin D. Roosevelt, paralyzed before he became president. Thousands died; thousands more lived to be permanently disabled.
Yup! I sure was!, during an epidemic in Detroit in the early 50’s. I had just come home for the holidays from Barbour Hall Military Academy in Kalamazoo, Michigan. I believe this was going into my second session at the military academy. It was a Christmas vacation. Parts of my memory are somewhat vague to me as are many bits and pieces of memory until after my last surgery in 1961. I located my hospital records which have helped me piece things together. I can almost remember to the very minute when I started to feel 'sick' and that stands out as if it was just a short time ago. I remember it as if I were looking at me through the eyes of another person. I can remember the dizzy feeling,
I was visiting a girlfriend of mine, my first girlfriend, Gloria. We lived on a street called Seyburn, in East Detroit, in Michigan. It was just days before Christmas with mounds and mounds of snow and soft flurries of snow coming down. She lived a block or two away and as I was leaving her house to travel back home, I felt very nauseated and dizzy and fell to the ground vomiting. I fell at the base of a tree that I can still see as a poloroid memory. I rolled over and as I looked up I could see that it had those long dried up seed pods which were probably about 8 to 10 inches long and still hanging from the tree. Clouds soaring quickly over head. I can still see the little balls of snow that had collected on my gloves, my rubber boots that I forgot to buckle up. I remember thinking to myself as I laid there that this snow whould make nice snowballs but an intense pain in my head said ‘get home, quickly”.
As I recovered and stood up to continue on my way home, I had a very intense headache and felt very weak. I never had headaches at least I don’t remember any, this one I remember! I managed to get home, told my step father I didn't feel well and laid down on the couch. By morning my parents became worried since by that time I could not move, not even a finger. Doctors still made house calls back then.
A doctor was called who was very much aware of the epidemic that was all around us, and immediately advised my parents to rush me to a hospital. My step father carried me to the car and he had to hold my head up which still stands out in my memory. He put on my hat from the military academy. The next memory I have is in a room, a pale blue room, with several Doctors looming over me. They removed all my clothes put on that starchy off white hospital gown which left my butt bare and rolled me on my side. I caught a brief glimpse of a needle that had to be every bit of a foot long. I was given a spinal tap, and the next time I woke up I was looking up at the ceiling in one of the hospital corridors. There were beds everywhere with other victims of the epidemic, lining the hallway floor after floor with all the rooms filled to capacity. It would be several weeks maybe as long as two months before I got a room, receiving all my care, feeding, baths in the long gloomy lit hallway, laying flat on my back and once in awhile being turned this way and that way.
I of course never had any idea of what was wrong with me, to this day those memories seem like they were all surreal, as if I were watching myself from another dimension. My hearing became very acute and I could tell when it was time for a penicillin shot, I would hear a ‘pop’ off in the distance, which happened three/four times a day. I recognized the flipping and flopping of the wheels on the food cart. My favorite nurse, Ms Delores Johnson, had a very unique squeak to her walk when she did her rounds. I would smile to myself knowing she would eventually be in to see me. The very distinct sound of the bed pan, at different times! On visiting day, there would always be a sound of ‘rushing people’ in the corridors. My parents only come to visit briefly on weekends. Visits were not very regular.
Most everyone in Herman Keifer Hospital at the time was a victim of the Polio epidemic. It was crowded, over flowing with kids and eventually we got to know each other and filled the hours with navigating the hospital, avoiding the nurses and orderlies and getting into some kind of trouble. By this time many of us were going through some type of treatment or therapy, each unique to the variations of Polio and how it affected us individually. Some had paralyzed legs, one or the other or both, right arm, left. Not so much the left as I remember it. Just an ankle or foot some times and then there were those that were in iron lungs. Much of what was going on at Herman Kiefer Hospital was experimental since I do remember several different treatments for those of us in different stages of Polio. When they took us down to therapy, it was like a football field of kids spread out on blue matts, some sitting, some just laying there like me, while a physical therapist pushed and pulled our limbs. I am most grateful for the selection of treatments I was given called the Sister Kenney Treatment along with daily physical therapy. Beautiful Khaki green army blankets cut into 10 - 12 inch squares, soaked in steaming hot water, and rinsed through the jaws of a rolling washing machine. Placed all over my body, as if they were trying to make me into an egg roll. Hot wet and painful and yes we cried. Maybe not from the pain but the fear of just laying there not able to defend yourself against this punishment.
There were the frequent whirlpools which I remember since they always asked me to make sure I used the urinal before they placed me in the tub. The orderly would say, “don’t pee in my pool”. . They did a lot of experimenting with needles since I received at least four shots a day. In time there would be a day when a special nurse would go around and just remove the small parts of broken needles from our but_tocks. That hurt more than the shots. Right cheek, left cheek, right arm, left arm back to the butt.
Eventually, I got to share a room with another ‘chosen one’, Robert Winters, he was actually a little worse off than I and colored as my mother pointed out. Even though he and I were in the same room with nearly identical conditions, he never received half the care and treatment I did. Even at 7 years old I could tell that something was wrong with the kind of care I received and the kind he did not receive. Even the black nurses did not give him the same care.
There were many instances in the hospital that I can remember as if yesterday and all out of sequence but most notably the time we got to see Song of the South on 16mm film and displayed it on the wall at the end of a hospital corridor. Wheelchairs, beds and girneys lined the hallways watching the movie. Even those in iron lungs got to see the movie backwards through their mirrors. I was still paralyzed at the time and a nurse forgot to move my head so I could see, but I remember all the glorious tunes coming from that movie.
As we progressed we got into more and more trouble. Seems like my upper body started to recover first, arms, etc. I was confined mostly to a wheelchair but I loved the girney and a gang of us would steal away and have races down the long winding floor to floor girney trails as we called them. Sometimes picking up enough speed to knock doors down to stop the ever increasing speed of the girney Gang.
With the sister Kenny Treatment, therapy and whirlpool baths I was definitely improving. I entered the hospital on December 24th, 1950-51 and stayed better then 13 months. Eventually I was allowed to go home with two full leg braces, crutches and an appointment to meet with the brace man, since I was going to be fitted with another brace for my upper body due to the curvature of my spine. I even remember him coming to the house to first take measurements and his name was Brenner. I also had scoliosis, with a very severe curvature of the spine. Which is also common for many Polio Victims.
In time although paralyzed, I regained back movement in all my extremities with just a few glitches. My left arm was strong as an ox, my left leg even stronger except that I had no ankle movement, it flopped all over the place thus the reason for the leg braces which were eventually replaced with one's that went just above the calf. My right leg! Now that was another story! I just dragged that one around so people would know I had two legs.
I still remember the rubbing of the stainless steel and the leather from the leg braces and some of the sores I would have to endure until the next fitting. It was always a problem until I got rid of the braces, which all came about from an assortment of operations on my legs and back.
The doctors started operating on me in late 1953, first doing a partial fusion on my left ankle and splitting a tendon to give my foot up and down movement. That was a success. During the recovery time of each of my operations I would spend about 30 days in a hospital until they felt I was strong enough to go home. During those times of recuperating I would meet more and more kids with many other illnesses, that would make me feel like I was basically one of them. So I really lost my awareness of being different very early on, wondering what was wrong with other people that walked and got around 'normally'. I was in and out of the hospital until I was 17. To this day I don't remember much as a 'normal' kid growing up. All the kids around me had some kind of illness, from Leukemia, to water on the brain, Elephantiasis, Cerebral Palsy, etc. These were normal people to me. Only in my junior high and high school days do I remember going to a ‘normal’ school. Somewhere I have a class picture that looks like it came out of ‘Freaks’ the movie but we were all normal kids, dealing with our differences which we did not see as other people did. Wells Donegan was a dwarf, Sally and Charley had Elephantiasis, Pam Clark had Cerebral Palsy, Billy had Water on the Brain (hydrocephalus) and had the neatest rolling contraption to get around and I can still remember their names, nearly 50 yers later. “Freaks”, thats a horrible world but I was fortunate, I was never made to feel different, just ‘special’.
The next surgery was planned for the right leg, same idea but it was a complete flop, literally. That one split tendon idea didn't work so they had to drill out a 1 inch diameter hole through the ankle joint and pack and pound the bone in-place so that it would all grow together as one bone. With the leg in such bad shape it took a long time to heal well.
Eventually after several operations I was able to get rid of the leg braces with staples holding my ankles together. I walked nearly like every body else I was told but that was never an issue with me since I couldn’t see myself walk anyway, I thought I was doing pretty good. I wore the fiberglass body shell, holding my spine straight for many years with regular fittings and alterations. The fiberglass brace was so tight fitting I had to have help getting out of it but boy was that a good feeling once it was removed for the night. Eventually I traded in the fiberglass cast for a very unique fabric (canvas) corset which I hated to wear because the ‘stays’ would wear through the canvas and cut into me. In time, around my 16th or 17th birthday I was offered a back operation that would fuse several vertebrae, and stainless steel rods would be placed beside my spine to keep it stationary and aid the body brace. I was supposed to wear the corset for the rest of my life but discarded it very early on in my married life. All these operations stunted my growth a little With all my X-rays and a little of the various doctors calculations I would have been about 6'2" had I not been chosen to have Polio. Right after the back surgery I was 5'10" and now with the curvature about 5'7". Most all my adult life I had a noticeable limp and when asked why I walked the way I did, I would always respond with, "why don't you walk like me?"
I don’t want you to think that there aren’t some good and knowledgeable doctors here in south Florida but there are way to many that just don’t know their business. That’s a problem the state should be dealing with and not us patients. Through my adult life, from about 1963 to 1985 I over worked, over achieved, and pushed myself to extremes not knowing I was wearing myself out, not realizing what I was doing to my body, my muscles. Doctors told me that what ever was bothering me was all in my head.
I was always stronger then a gorilla, definitely stronger then any of my employees. Not able to leap tall buildings but definitely able to do damage to one. Not a macho guy but I enjoyed it when any of these hulking guys would come along and try to open this, or move that, or bend it or lift it and just couldn't quite make it, I managed to find it in me to handle the feat. Literally by standing with only one leg, my right leg was just support although you would not really know it when walking. The doctors knew what they were doing with the leg operations. At this time, 2002 I cannot move my right leg at all. My right side always showed more weakness then my left side so the left side was overworked, which is now wearing out a little quicker than I would like. My right arm shows that acute look of weakness many of us polio survivors can relate to. My left hand could probably crush a brick but my right hand can only hit the keys on a key board, index finger only but probably faster than you!. The doctor would always ask me to first hold my fingers rigid and bring my thum tip and baby finger tip together. And do a doe-rae- me on each of the other finger tips. Never a problem with the left hand. But now my right hand just scrunches up when I try to touch the finger tips to my thum tip.
I did it to myself without really knowing it. I had no idea that there was even such a thing as Post Polio Syndrome and in mid 1985 I took a weekend trip with my daughters and their boyfriends to Key West for some fishing at the end of the 7 mile bridge.
In assembling more of my Post Polio Puzzle you can find more parts throughout the web site which is a tribute to my days growing up in Michigan, and going to school. http://www.waterfordkettering.com
It had been a lot of years since I even walked one mile without stopping, since my high school days in fact. This day I walked the entire seven miles to the end of the old bridge, keeping up with the kids. I got all the way to the end. The pain in my lower back was tremendous nearly unbearable. The pain in my left leg was now very overpowering, my hips never bothered me until this fateful day. I felt like a good rest was absolutely necessary and I would get back the strength and get rid of the pain to walk the seven miles back to my van but when it came time to walk back, I couldn't even stand. I never recovered from that day of over exertion to be able to walk again without crutches or get around without a wheel chair. They had to carry all the tackle boxes and ice chest and tow me back on the cart we brought to handle all the heavy gear.
I can probably handle a short jaunt to the kitchen from the bedroom now and again but I am so very cautious when I walk that I prefer the crutches. I know if I fall and break my right leg, its over and gone. With fused ankles and a fused spine the likely hood of damaging myself even more is very likely so I don't push the envelope. I have fallen a few times, during the past several years, sometimes waiting hours to get back up, some how. The strength in my upper body, mainly my chest, left arm and shoulders is still immense but with every extra exertion I place on those muscles I am decreasing the life span of my remaining muscle strength. As Polio victims we really aren’t using the same muscles that the virus shut down, our brains and bodies found ways to use the balance of our muscles that were unused, about 5% and make those take over the load. As I have come to believe it, and as I prepare for it, I will eventually revert back to the days when I was totally paralyzed. Of course I can delay that by just taking it easy, and I mean easy! More than likely I will hopefully have a *heart attack since I dread being any kind of burden on my family. I would love to live to be about 85 like most of my other family members just to enjoy watching my wife grow old with me, my daughters growing old, their kids growing up with families but I don’t think that is in the cards. I don’t want that to sound morbid since I can tell you very honestly I have lived a more enriched life than most, due to Polio.
At 59 I spend my time sitting behind one of several computers in my office/den/doghouse. I was forced into retirement so there is no retirement fund, no extra income, no supplemental income other then what I can generate through the computer. My wife Sandy is now the bread winner with her upholstery business which she runs from the house. She just happened to get interested in upholstery right around the time things started falling apart for me.
I created a web site for my wife http://www.upholsterylady.com a long time ago but since 9/11 things have gotten real slow and it is a struggle to make ends meet but I think we will get through it all.
I have to reserve my strength to even open a jar, or lift something that is just a little on the heavy side, since I know it will exhaust me. Just stepping up into the van is a choir that sometimes takes a day to recover from. In a squeeze I know I have the strength but I have learned to follow my stress levels and conserve my strength for later years. It would almost appear that I have become lazy and trying to explain to others that which is in my mind over these safe guards is not always understood. So I just don’t push myself suffering a little bit of that ridicule.
My wife has taken on the roll of bread winner and it is very difficult for her to understand that this once very strong and supposedly healthy guy that loved to work 20 hour days seven days a week now has to take high blood pressure medicine up the kazoo, pain killers, and sleeping pills since I can no longer even fall asleep without the help of pills due to the immense pain when I lay down. I am over weight and that adds to all the other burdens but exercise is out. Never exercised anyway, just worked all the time in our manufacturing business.
To compound all that I am a Gemini which as I understand it even pushed those characteristics to extremes. Always taking on more than I could handle even though I could handle it but the consequences I am now paying could have been reduced tremendously if I would have been a desk kind of guy. Or if I knew what was in store for Polio survivors
After graduating from high school in 1963, with a broken heart from a big break up with a long time girl friend, I hitch hiked to Florida to visit my parents. I had never hitchhiked before that first jaunt to Florida on June 21st, 1963. My first deteriorating mistake. I now remember a few moments of discomfort in walking during that hitch hiking experience but I would just sit down on the curb or on my backpack and rest. I stayed a month, and discouraged and still heart broken I hitchhiked back to Michigan. From around late 63 to early 1966 I did a lot of traveling never knowing what I was going to do. I ended up back in Florida and learned my first trade in fiberglass design, plug making, mold making and manufacturing. Got married in July of 1966 to my wonderful wife Sandy, raised three great daughters and now have seven grand kids. Who are now asking questions.
I have been dealing with Polio so long that I don’t feel different or that I was dealt a bad hand. I have been able to accomplish everything I set out to do, mastering many skills with my hands and brains.
I do feel that Polio today has been put on the back burner and there are many in the medical field that should turn in their diplomas and get jobs digging ditches. And they should be doing that at the the bottom of the ocean.
After my last fateful walk on the Seven Mile Bridge, I knew something was wrong and put my trust in the doctors here in south Florida. Big mistake! I was told by doctors it was all in my head, and everything they told me to do, did nothing more then take away many precious years of my life. One quack that comes to mind convinced me that an exercise bike would be my only option and as usual, I did not start out peddling for a little 15 minute jaunt. I knew I could handle an easy hour. Three days later I woke up in more pain than I care to remember. That’s when I started to investigate this Polio thing on my own and the one big thing I learned right up front, was stay away from vigorous exercise. In my case any exercise since all my muscles were effected by Polio. Since 1985 doctors have become a little more informed here in south Florida, but not much.
Finding other Polio Survivors some times brings tears to my eyes knowing we are the Twice Chosen People which makes us all very special. I have heard from and met very few. Those that I have met all have a very positive look on life and have had as rich and fulfilling life as I have had.
"It will be a short chapter in medical history," he said. "It could be a 20-year phenomenon because most of those who got polio during the epidemic are now in their '50s and '60s," Ryan said. "The next generation won't be seeing this post-polio syndrome."
The first operation I had was in 1953(?), on my left leg. The idea behind the operations was to stop the dragging of my feet since I had no up and down motion in my ankles, left or right motion either. Both legs, with my left leg having more potential than my right so we started there.
My doctor was Dr. William Blodgett who was my orthopedic surgeon and really the only doctor I had while going through my recovery stages with Polio. He performed all my surgeries
The operation on my left leg fused my ankle so that it could only go up and down if the other part of the operation worked which was to split a tendon from one side of my leg which was working and fasten it to the other side. This one worked fine. Months later I was able to discard my left leg brace.
Some time later the right leg was considered for the same procedure as performed on the left leg. This operation did not work and was slow healing. I screwed that one up by trying to play football and breaking the support in the cast and not telling anyone, so the ankle although stapled was now broken and was not able to heal in to a solid ankle bone. Another operation was necessary.
The doctors decided that the best way to eliminate the need for a brace on my right leg and correct the damage was to fuse my ankle in a set position so that I could walk reasonably well with out the right leg brace. In between these operations it was necessary to do something or other to stunt the growth in one or both legs at different times to keep the legs growing at nearly the same length. I remember the talk but not the times entirely.
From 1953 to 1961 the memory of the operations is very sparse, only bits and pieces stand out in my mind, and always as if I were looking at myself from another dimension or at least in the picture as another person, me of course. Not one of those out of body experiences. Just a little more emphasis on the memory which makes it stand out.
The operations to my legs basically were successful since I was able to get rid of the leg braces and walk in such a way that not everyone noticed I had a limp. The back brace! Now that’s another story. And I was around 17 when that choice was given to me. I had a very bad curvature of the spine and it was getting worse. My x-rays look scary, and the curvature tells me that my organs had a good time finding places for themselves. The ankles were also fused with consideration of me wearing shoes with a heel with an additional 1/2 inch lift in the right shoe and so, I have never been able to walk with out wearing shoes that do not have a heel. The rare times that I have gone bare foot I have to force myself to walk on my toes to compensate for the fused position of my right ankle. More than likely a little miscalculation by the doctor and the position my ankle was fused. No problem though, I just don’t go bare foot, or walk anywhere without shoes.
The experimental operation at the time was called a Harrington Fusion, now very common place. Where they would fuse 6 plus vertebrae together and then support the spine with long stainless steel rods on both sides of the spine. Two rods on one side of the spine and one on the other clamped or fixed to the spine with scary looking clamps. Depends on the severity of the curvature I imagine. For years I could feel them inside as far as some kind of irritation but it did get rid of some of the dependance on the canvas corset. The operation was not a walk in the park and there were some complications since they say I did not wake up after the operation for well over a month. I remember slowly opening my eyes one day and looking out through the door in my room at the nurses station, and just watching until one of the nurses could feel me staring and came in to see how I was. A few weeks later and I went home.
I measured 5'10" after the operation and stood pretty rigidly for a very long time and had to use crutches again for awhile, then I was off and walking, nearly normal. And taller!.
I avoided swimming with the group although we lived on a lake, and or taking off my shirt or wearing shorts in public since one leg has always been skinnier than the other and the curvature is very evident when I am not wearing a shirt. The scar on my back was not cosmetically part of the procedure and it stands out like an 18" zipper.
I was a typical young man chasing the girls and had several very special girl friends and I wish I could find a way of thanking them for never making an issue of me having had Polio and that I walked and looked a little differently. There was Jean Smith who baked me a cake once, Pam Frantz who walked like me, Kay Jewell who was my first real girl friend. Then Norene Cummings and ever since late 1965, my wife Sandra. We have been married for 37 years and she has endured many ups and downs with me physically and still hangs in there. We have three absolutely fantastic daughters and seven great grand kids.
I have all the common characteristics of a Polio Survivor, high blood pressure, sleep apnea, insomnia, trouble swallowing and fatigue, which is a very mild word to use to explain sheer exhaustion at times. I once enjoyed the cold and would take a dip in the pool as low as 40 degree’s. Now I get a feeling in my ankles as if they were so cold they feel like it is a burning cold. Darn right painful and no amount of blanket stops the burning cold feeling. This past year (2002) has been the first time that the cold of any kind has really bothered me.
Managing my weight is a BIG BIG problem. I also have Arthritis and just about every other ache and pain that can be associated with over exertion. There are many times that I get very depressed but find a way of pulling myself out of it . I some times have a difficult time concentrating or staying focused on projects. Fortunately my kids call often enough that I am called upon to think of other things and given problems to solve. It could also be a Gemini thing too. But like most all Polio survivors I have been living with these differences all my life and they are normal to me so I deal with them.
At present I consider myself confined to a chair although I use crutches to go to the dinner table, get to the bathroom, to the van, or just around the house in general. Still able to dress myself but that is a task in itself, an exhausting one. When I cross my right leg onto my left leg to put on a sock or shoe it is easier when there is a sock to grab onto, to lift my leg in place. Not so easy when I am just getting out of bed and first have to put on a sock so I have something to grab onto. Actually I am not able to cross my legs to put on my socks but I thought that would at least give you an idea of what it is like trying to get dressed with a limb that is just dead weight. When you have fused ankles you can’t just slip into your shoes either, you have to pull them on, which is why I wear industrial boots so I have that little leather strap to grab onto. Next time you put on your shoes, imagine doing it without bending your ankle in any way. Tieing them is another long story. Velcro straps are just around the corner.
The most annoying thing that happens to me while dressing, nearly every day! is buttoning up my shirt. It never fails that I get the buttons and button hole off by one and I have to start all over again. Once I get my shoes on, it is a quick swing or two on the crutches and I am in the bathroom. I can only stand long enough to brush my teeth, wash and shave, I have had a beard for a long time now, so shaving isn’t that big of a deal. I generally get to the kitchen where it takes me about an hour to shake off the affects of my pills. The balance of the day is spent in my office/den/doghouse behind the computer working on web sites, or other projects that I can handle through the use of a computer.
I have never slept on my back, almost always on my left side. And NEVER on my stomach, not that it has gotten bigger, just that it is to painful. I have noticed that in the last year my right arm has weakened considerably, my right hand too, mainly the wrist which means I can’t push myself up with that hand with out the wrist giving way. Arthritis is setting in but not to bad yet. Living in south Florida has helped that issue. My right leg is just there, follows me everywhere but does nothing. I have been thinking about putting a handle on it so I can more easily get it to do what I want. The fused ankle was a great idea, I understand more and more stroke folks are opting for the ankle surgery.
Medication! Now that’s a problem. I am probably one of those that is just a little to dependent on pills although they do do what they are supposed to, I tell myself. Pain is a big big problem, sleeping just does not happen without sleeping pills. And the blood pressure is compounded with all the ‘fat’.
Since Sandy is the bread winner, and starts working very early, I try to fix her a lunch, and most of the time I have enough energy to prepare the dinner which is nearly all nuked now, with the exception of a treat to a steak now and again. Living in sunny south Florida helps and makes life much easier to contend with since there are few days I have to struggle with any weather issues.
January 9th, 2003
An on going project
Time for an update. June 3rd, 2005, my 61st birthday and I am still here. tired
but still able to get around. Just crutches and a wheel chair in side the house and a scooter out side. Its necessary to limit the wear and tear on the remaining muscles. Its called conserving, period and you have to get good at it, and hopefully convince other family members that you need to pace yourself.
August 18, 2005. I know! too much of a gap in there but I will try to get down to business again.
Major observation in the past year has been if you work hard at conserving your energies you will notice that you no longer feel like you are falling apart, or gradually losing more and more control. From my viewpoint, I have noticed that when I go over board, I feel the results for several days, and just possibly I have worn out just a few more muscles. I am not nearly as capable as I was when I first started to take notes. But the head is still screwed on tight, I think
I am totally dependent on crutches now, a wheel chair, and my big wheels. I am still able to take care of myself with all those other personal needs, and I am the one, designated the ‘cook’, if I (we) want to eat. I just use a bar stool and set everything out all at once and prepare it from that one spot with very little traveling to the refrigerator or cabinets.
Although I still like cold, I notice I am also much more conscious of it and can not tolerate the temperatures I once found invigorating. I would very much enjoy getting into the pool when the weather was as low as 40, in the winter time. Now I am not so anxious to get into a pool that is that cold.
By the way, you will hear people tell you to exercise and I hope you have taken the time to learn that is the worst thing you could do to your body, in fact you don’t want to do it at all. Your day to day movements will be enough exercise.
Each case of Polio is different and each of us will experience it in a different way but the important thing to do is research it on your own. The Doctors no longer even know how to spell P O L I O. Exercise is bad, bad bad, at least for me, I know that for a fact. One Doctor I went to said it was all in my head and I just needed to exercise. I did and was on my back for three days.
Medication may eventually be necessary and in my case since I have had numerous operations, and can’t sleep at all due to the pain when I lie down, pills are a part of my life. And with pills and Polio comes depression. Find something to do that you can get so deeply involved in, that you have no time to allow depression to take over. Build model planes, sew, draw, or paint, even if the hands hurt from arthritis. In my case I have been working on a Yearbook project since about 1995, scanning, and cataloging yearbooks from my school days. Those last years that I was able to enjoy life without all the work and responsibility of becoming an adult.
I have been fortunate to have a few people send me their original yearbooks from those very years when I was just a teenager and I have been able while scanning the pages of the books, relive almost all those memories, and that has been a very important part of me getting a handle on this Post Polio thing. I look through them often to over come a moment of depression or to travel back and remember what it was like to be a teenager once again. I can fly, I can fly...
Find a project something you can do with the way you must live in order to enjoy your family grand kids and hopefully some great grand kids. Some people may say it is not good to live in the past but although the future looks good, it is not something I like to dwell on, just growing old is hard enough to handle.
Just having something to do on a day to day basis, has made life worth living, and gives you the time to understand there are many more years left to those of us that have Post Polio Syndrome. As the years go by, it gets easier to understand and control the quality of your life. You may feel like you can climb that hill, or go sky diving, or walk that mile, but don’t! Conserve that energy for those times when you want to go out to dinner, or shopping. Put all that macho stuff aside, your not impressing anyone any more, and you have to start using your head.
If nothing else please understand that I do not feel bitter about being chosen to experience Polio. I don’t think I have ever questioned ‘why me?’ This has pretty much been how I have had to live all my life and this is ‘normal’. I really could not have imagined life any other way. I’m not to thrilled about going through this ‘Polio’ thing all over again but I am better prepared this time, mentally. My only concern has been for my wife and children and that I may not be around to see any great grand kids but I will have lived a very fulfilling life.
*I do not have any sort of death wish. I only hope that when the time comes, it comes swiftly so that my family members are not burdened with taking care of me. It is very difficult to see just how much they have to go out of their way to assist me. If I play my cards right that could be another 25 years.
Please read Jann's Story and you will understand why I also want to tell my story, Click on the links below to take you to her web site and the many links she has. Book mark it since there is more information there than I have found in a long time. Use your BACK button to come back to this site.
Jann’s Polio Pictures. A picture is worth a lifetime of Polio Memories.
Jann's PA Dutch Kitchen: Jann Cann Cook
Sister Kenny HotPacks Boy does this describe the memories of the wool blankets!
More links of Interst to Polio Survivors: Click Here and start your search for Polio, then Miller
Warwick High School 1965:
Jann's Polio Story
by Jann Hartman
I had a normal and very wonderful childhood in a small town in PA. Life was good, until the summer of 1953. I was about to start first grade in September, after a Labor Day Vacation in Ocean City, MD. I loved the beach! What we didn't know was that I had been exposed to the polio virus, and it was replicating in me. When I got sick, I had typical "flu-like" symptoms of nausea, headache, muscle pains. That passed for the moment, and I had a great end-of-the-summer vacation. I did start school on the first day, but I did not feel well. It was a l-o-n-g day, and by the time I walked home, I was dragging my right leg. I was put to bed, and never returned to school that year. The next day, I could no longer use either leg and had to be carried to the bathroom. By the end of the week, I was in Lancaster General Hospital (LGH) in total "isolation." No parents or any other visitors were allowed in my room. My parents did get permission to see and talk to me from the hallway wearing protective masks. I do not remember having the spinal tap that confirmed the awful diagnosis of "infantile paralysis." Also called "poliomyelitis" or just plain "polio". But, it is in my hospital records and might well have been one of things repressed by a scared little girl alone in the hospital. That diagnosis was to change the rest of my life.
There's an old saying that when you are dealt lemons, you make lemonade. That's a little too much for a 5 year old to handle all alone; but luckily, I had a wonderful family who helped me with the "lemonade." I got polio just a year or so before the Salk vaccine was considered safe enough to be distributed to all children in the schools. This "summer plague" was terrorizing families. Everyone knew someone who also been affected by polio. But, I was the only one in my hometown to come down with this polio strain in September of 1953. My family was "quarantined," and my brother was not allowed to go to school. There was great fear of polio spreading to others. The clothes that I wore to the hospital were supposed to be burned. But, my mother was a good seamstress and had made them, so they did allow my mom to have my clothes dry cleaned, instead. It was a very hard time for my family. I knew nothing of what they were going through as I was having to deal with a lot of things in the hospital on my own. This was before the days of having your family with you when you were a child in the hospital. I had to believe that what they were doing for me, to me, was for the best. There was no one to speak for me, and I felt a sort of abandonment because of the hospital rules at the time. My parents were wonderful and tried every way they could to be with me, and do things for me. I knew my parents and others were sad about what happened to me. I got lots of cards and gifts, and visits when allowed.
In the LGH, I had wonderful nurses who tried to be there and help when my family was not allowed. But, my days were filled with lots of unfamiliar medical interventions. I had my blood drawn more often than I care to remember, and daily shots for some reason. It provided me with a fear of needles that remains today. Back in those days needles were not disposable and so they were sterilized and reused...and dull! My long blond naturally curly hair ended up in knots from lying in bed, and it was cut short by the "barber". I was paralyzed from the neck down with my arms being spared (or so I thought at the time). I couldn't even lift my head up. I also thought I was spared pulmonary paralysis (bulbar polio) since I did not have to be put into the gigantic and scary "Iron Lung", but one sat out in the hall. My legs were wrapped in "hot, wool cloths" that were part of the Sister Kenny treatment. I was given a salt pill with a little molasses (to help it go down) each evening. The "hot packs", as they were called, were applied several times a day. After about six weeks, I was transferred to the State Hospital for Crippled Children, in Elizabethtown, PA. It was sad leaving LGH and the care of the nurses who had become a second family to me. I had been getting more visitors, and my room was becoming cheery. I even had been allowed to listen a radio somebody gave to me (there were no TVs in the hospital back then). I was becoming settled, and I guess I thought I would soon go home. Little did I know that it would be almost a year until I would be home. And, at Elizabethtown my life was to change yet again, and I would have another big adjustment to make.
I was put into a ward of children who had many kinds of crippling diseases. I have no ideas how many girls were in this "big room" with one little TV mounted near the ceiling at one end of the room. I remember being told that the girl in the bed next to me had Cerebral Palsy. I did not know of any other polios than myself, but I am sure there were others there at the time. For some reason, we were not allowed to have pillows, so I put my little teddy bear under my head at night. He became my constant companion in that hospital. We stored all our "stuff" in a drawer under the bed. I do not remember turning 6 the end of November, but there are pictures me and all the presents I received. I do not remember Thanksgiving. I barely remember Christmas. Although I do remember "Santa Claus" came to visit us in the ward one night. I got a ceramic angel, and it became a treasured possession. I was send cards and got many gifts. I do remember many small presents wrapped by my church Sunday School class. I could open one gift a day, and that was special. Because of the stringent rules in place at that time, I only got to see my parents every other Sunday for a few hours. Most of the time outsiders (even my own parents) had to wear masks: it was awful! It contributed to my feelings of separation and abandonment. I was not told what I needed to do to go home. I would have done anything. I hated the hospital routine, but I put up with it ("bravely," they said). I was a good little "trooper." I just wanted to go home, but they had other plans.
I was given physical therapy in the warm pool in the basement. I loved the warm water, but my memory is that this only happened about once a week or so. I was fitted for a right long leg brace which included a belt around my abdomen because of the weakness in my right hip and abdominal muscles. The brace included brown high-top orthopedic shoes to provide support to my ankles. My left leg had recovered nicely. I learned to walk with my new brace and a pair of wooden crutches. Once I mastered climbing up steps with a heavy piece of steel strapped to my right leg, I was sent home to continue the rest of my life. And, boy was I ready!
I was welcomed home (unlike some towns which forced "polios" to move out--they were like the AIDS patients today--feared). I was blessed to have family and friends for support. The neighborhood kids were invited to a party in my backyard to welcome me home. I even got a paper crown, and was declared "Queen of the Neighborhood". It was wonderful to be home, at last! People may have been afraid for their own children, but I never felt any of that. My childhood continued, and I even turned into a "tomboy". I bent my solid steel metal brace by jumping out of a tree! My parents were told to let me do whatever I wanted and not to "baby" me. They had a hard time letting me get myself up after a fall, but I was encouraged to learn how to take care of myself. And, I am grateful to whoever gave my parents that advise. I had many more trips to the hospital for operations, and trips to the brace man for new braces as I outgrew the old one, or for repair. But, in between, I was living a wonderful, nearly "normal" life again.
While I was in the State Hospital, some photographs were taken of me in the Physical Therapy Room. I barely remember why they were taken. But, it seems the photos were submitted to the National Foundation for Infantile Paralysis (which became the March of Dimes) started by president Franklin D. Roosevelt. I became the Lancaster County Poster Child for 1955, and the posters were put up in businesses all over the county. My grandfather had one in his office for many years. It was even brown from his cigar smoke, but I still have it today (one of the only ones remaining, I'm sure). My mother was active with the "March of Dimes" and helped to raise a lot of money to help other polio survivors. I was lucky that my dad had good insurance from where he worked, but the National Foundation paid for some things not covered by the insurance, like continuing Physical Therapy. I was happy to be a part of such a wonderful organization. The Lancaster County office was run by Christian Rudy. He was a wonderful, compassionate man who ran a very good organization that helped countless polio patients get the medical help, therapy, and braces and other things that they needed. They even had a yearly Christmas Party for us. It was somehow fitting that they would give us back the "Christmas" that some of us didn't have in the hospital wards.
I participated in sports in school (very badly!). I even took baton twirling lessons (even though I couldn't march!). I was in the school play one year, and student director the other. I learned to drive my sophomore year, and loved this new found freedom. I did not have my own car, but was allowed to use the family's second car, an old greenish blue Ford Falcon. It was great! The very first McDonald's opened up in Lancaster only seven miles away, and my friends and I became constant visitors. It was a great place to meet guys. Like all teenagers in the 60s, I loved "rock and roll", American Bandstand, Elvis, the Beatles and the community dances! I loved to dance: "rock and roll", jitterbug, and even polkas and square dances. It was a good life. Being a teen was wonderful, and I found I could do most everything I wanted to do. Having had polio was no problem for me. I went to a small state college in upstate PA (now Mansfield University), and graduated in 1969 with a BS in Home Economics Education. I even had a teaching job lined up at Pottstown Junior High School before I graduated, and my future was looking good. Polio was something I had recovered from and it could no longer hurt me, or so I thought.
But by 1983, changes were happening to me. By this time, I have been married 13 wonderful years, and have 3 great little boys, and we are living in lower Delaware. It was during a trip to Epcot Center in Florida that I learned that I was no longer able to do all the things I used to do. After a morning walking around seeing the exhibits, I found I couldn't walk any further as my hip hurt so badly. We made it out of the park somehow (never thinking to ask for a wheelchair), and I thought I'd never be able to return to a park again. I stayed away from all flea markets and malls in fact anywhere that involved more than a little walking. In retrospect, what I was experiencing is called Post Polio Syndrome (PPS), but it was a few more years before I even know PPS existed...and even more before I was diagnosed with PPS...and then even more until I learned to accept it!
My diagnosis: As a polio survivor from 1953, I finally went to the local post-polio clinic here in Baltimore, MD [now closed, unfortunately]. My PPS was diagnosed at that first clinic visit in 1989, but I still did not know to cut back on my activities. In fact, with the boys all in school, I took a part time job with the federally funded Supplemental Nutrition Program for Women, Infants, and Children (WIC) where I worked as a Nutritionist and Lactation Consultant (LC) until 1996. The pressure was too much for me with quotas for client participation, lack of staff, and super full schedules. I enjoyed the counseling part and felt I contributed a great deal to the program. And with over 20 years experience with Breast-feeding and my Board Certification as an LC, we had a great program for moms and their families. I was sad to leave, and I became depressed for the very first time in my life. My family, friends, and the computer helped pull me out of my depression without medications. It has taken a year, but I feel I am getting a handle on how to get on with my life and enjoy my "retirement"! I am even using a wheelchair more especially for distances, and know I will someday I will most likely be using one all the time. But, I just see it as just one more change in my life: another adjustment to be made.
At this point in my life, I am convinced that I need to plan for the future to make the most of my remaining mobility. I am using mobility aids, like a wheelchair or electric scooter, because of my inability to walk. My husband, John, and I are not putting off anything until later that we can manage to do today. We have taken some wonderful vacations, weekend trips, and cruises. We have been to 11 countries in Europe visiting with some of our friends and family. We are planning to travel in our travel trailer, so I can rest when needed, and see more of the USA and Canada. After my husband retires, we hope to stay active in any way we can that will not tax the resources that my body has left. I do not have any regrets in my life. I have been surrounded with wonderful friends, too many to list, and I love them all. I am blessed to have wonderful parents and a big brother. And, most of all my partner for life: my husband, who has always been there for me; and our three boys. I feel very blessed, indeed!
I enjoyed meeting some other people who were at the PA State Hospital for Crippled Children in Elizabethtown at the third reunion picnic at Long's Park in Lancaster this last summer. They have a picnic ever two years, so the next one will be in 2004. If you have been a patient there, please contact me, Jann and I will see that you get invited to the next one.
Thanks to Jann I have created a page to help you with all the links she has located through many hours of travel on the Internet.
Just click here for her LINKS page.
One way or another 99.9% of all clipart used on this web site is from artist Ron Leishman and his collection of ClipArt on CDRom.