While madly searching for an alternative to surgery I once again began to ask why and came across PolioToday.org. It is the first time I have heard anyone say "I had Polio and I have PPS" and that they want to talk about it.
In 1952 I was diagnosed with Polio. I was 5 at the time. I remember my dad coming in one morning to see why I wasn't up. I couldn't move and he tickled me to get me up and I still couldn't move. The next thing I remember is him carrying me to the car. It was a very long ride. Most likely because we lived in a suberb about 50 miles from San Francisco. I remember a very bright room, I remember horribly pain and laying on my side and some big man in white saying "if you move again, we will have to start all over", I assume that it was a spinal tap. I remember a crib and crying because I wasn't a baby and slept in a big bed at home. I remember it was Christmas Eve and I had gotten a Tiny Tear doll and they wouldn't let me keep it. They did let me keep an orange from my Christmas Stocking. I remember that everyone left me and I was alone, all by myself. Even now I remember wondering what I had done wrong and why they had left me.
I don't remember many visits from anyone but I do remember, hot wool blankets (to this day, I get nauseated If I smell wet wool), I remember hateful mean ladies that yelled at me constantly. I remember horrible stretching of my legs and back that they would do. I remember seeing my Grandfather in a small mirror and "they" wouldn't let me get out of the stupid machine (I realize now and from my hosipital notes Children's Hospital in the Bay Area...can you believe they still had them) that I was in an Iron Lung for over 8 months. I remember the leg braces and climbing what seemed like an endless long bridge, that you "had" to walk over if you wanted to eat lunch. I also remember a small dark place that they would push my bed into if I was bad and shut the door. Yes, I remember a lot about when I got "sick".
Unfortunately, I never remembered talking to my family about "it". Not only did we not talk about "it" then, no one would talk to me later in life. I soon began to realize it was a taboo subject.
When I fell and broke my ankle in 1994, I was 44 at the time, we still couldn't discuss "it". If my mother was a live today, I will tell you that we would most certainly have a nice lengthy conversation about "it". Nonetheless, after 7 doctors sort of diagnosis of MS, L. Gerrigs Disease, toxic poisoning etc and of course the best one of just being nuts, I was finally diagnosed with PPS. I by then was 46. Let me tell you it ran rampid. I was braced from head to toe, put on crutches in the house and wheel chaired out. My marriage ended as did my career. I was angry and frustrated and I fought it with everything I had. Of course you know who won. It certainly wasn't me.
After 5 years of heavy drinking and a lot of anger management, I settled down. Funny so did the PPS and together we have lived harmonously until about 3 years ago. First neuropathy of both feet. So once again (since I had moved completely out of the state) I began seeking answers from physicians that had no clue. Then my back........what pain I have. Many doctors. Still I have no answers, but deep down I do know that my "little buddy-PPS" has once again wanted more attention then I want to give it. I not only have problems with my feet, legs, back, balance, numbness, tiredness, fatigue, and so on, I now find after visiting a Spine Specialist that I need from C1-2 to T-1 total replacement and a and I'm quoting his notes "complex reconstruction of the lumbar from L1-2 to S1".
Have you or do you know of any Polio Survivor that has had this type of surgery and what the outcome has been. I'm not liking the idea of it because of all the complications that can occur which has not a thing to do with PPS. Fusion's not taking, doner bone graft not being accepted and so on. However, if it would help me with my quality of life, it is something to think about.
I would appreciate your help. Thanks for listening.
I guess I was "fortunate", in several ways. I had polio at age 21 months, spent only a month or two in the hospital, and remember essentially none of it. (About all I can remember is being home the first few days and being plopped down in our "library" to play with my older brother. And a vague memory that for some reason I had to crawl everywhere when 2 months earlier I was walking with no trouble.
But I eventually regained my strength and became "normal" (though always the weakling who was the last kid picked for kickball).
And never discussed it with my family because, close as I can figure, my father never told my mother I'd had polio, and neither one of us told me -- I found out at age 53, just months before my father died.
Luckily, when I finally figured it out (it was via an EMG being done because of signs of myopathy) I knew what PPS was and didn't have to spend long connecting with what few (and reasonably sorry) resources there were for PPS.
The thing that saddens me most is how I've let down my wife. I'm still ambulatory and working (when not laid up, as I've been recently, by a kidney stone), but at my current rate of decline we'll have to move out of our home (of 36 years) within 5 years, and it doesn't give my wife much to look forward to in her "golden years".
Sorry -- can't help you with the spine thing.
Thanks for taking the time to write me Dan. I feel bad, not for you but because of the situation that has been caused by PPS to you.
As I wrote, I began a fast decline when it first raised its ugly head 18 years ago but by the good grace of God I suppose, it went in what I kindly nick named .....remission. Perhaps your decline can loose its strength as mine did and you'll beable to keep the house that you've both lived so long in. I assume there probably is some property involved and it can be overwelming. I understand.
After years of remission basic chores are once again dropping me to my knees (but I had another 15 years) and the day to day things that I feel is forced on my spouse gives me much guilt. From the sounds of things, your having basically the same issues. I am thankful that I had more time and the good sense because I slowed way down and I mean way down.
Try and slow yourself down, pace yourself. Don't fight it................cause it will take you down and once you've fallen....laugh its full head off at you. Win Dan................fight to win. You cqn do it, I know you can.
Write any time