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Rosesareblue · 07-22-2004, 09:31 PM

My dad contracted polio in 1955, just a few months short of the vaccine. He wasn't expected to live, but he did. He lived a full life in his wheelchair. He coached football, designed parts for the aerospace industry and raised a wonderful family. He passed away in march 2002. I couldn't believe it when died. He was well one day, and the next day he was in the hospital and dying. My dad was secretive about is affliction, he rarely talked about it. As a kid I would beg him to tell me why he couldn't walk. He'd say "I have a bug". He wouldn't dwell, whine or moan. He was proud, and rightly so.

When I received a copy of his death certificate I learned what killed him. Not the polio, but the post polio afflicition. What I found out was that he had diabetes, pneumonia, emphysemia, muscle weakness, memory loss, etc. All those nasty things that tear away at a body that is already raveged. How did he hide those things from us? He wouldn't let them bother him. I miss my dad, he died young, 70 yrs. old, but he had the body of a 90 yr. old. I still see him as a handsome 23 year old sitting in his wheelchair with me as an infant in his lap, and my mother smiling next to him. I try not to remember him in ICU with breathing tubes.

ppfla · 10-17-2004, 08:45 PM

HI- I just found this site as I was surfing the web for info on Post Polio--I am surprised that there are so few posts--hope we can find some others out there who want to join.
I am almost 57 and had polio in the summer of 1952--could not walk and had lots of physical therapy--recovered fairly well and searched out activities that made me use my right leg which is the one that had residual weakness.
Today I am finding more and more, that I have difficulty walking long distances and suffer leg cramps and spasms quite a bit. I went on a trip last year to Europe and did so much walking that I had to use a wheelchair coming off the plane on the way home--very upsetting to say the least--I have always feared that I would some day be confined to a chair.
I have been to a doc recently who said I have post polio--said walking in a pool is the best exercise-- anybody found other excercises that work well for post polio??
Looking forward to hearing from everyone out there..

kovena · 10-22-2004, 11:04 PM

I have been to many Doctors to try and find out what is wrong with me. I have finally had Cancer Relapse ruled out which made me very happy but left me with the same problem...What the heck is wrong?
I had Polio as an infant and was unable to sit until I was 2 and walk until I was 3 but only recently found all this out. My Mother had forgotten about it...nd suffered drug addiction and alcoholism for so many years that she cannot remember much about my childhood. There is no one left alive in my Family to tell me anything. My Mother said that my Father did not believe in Doctors so the only thing they got was an affirmation that it was Polio. I have not had any problems with it since infancy and toddler age but now I am becomming crippled. I already cannot use my arms and am in such pain that 60mgs MS Contin every 6 hours, and 30 mgs MSIR every 4 hours allow me to do the simplest tasks...like stand up and type and wipe myself...
My problem is that I had forgotten all about this since I was only told about it a years ago and have not told the Doctors about it. I either blocked it out in fear or plain forgot. Not to mention the memory loss from meds that may have made me forget. But now I remember and will be telling all the MDS about it, includiding a Rheumatologist I will be seeing on the 10th of Nov. Hopefully I will be able to rest easy and find out finally what is wrong...does anyone know if there is a cure for it? What about progression? It went from my Lower back to one shoulder and arm to the other and to my clavicle and ribs and now my hips. I am on high doses of meds that help and sometimes don't help.
Is there a way to stop it from progressing? What do I have to look forward to if it is Post Polio? I have so many questions...so few answers...and am not sure if the MDs even know about it because I only heard it from the BBS here...and from my Mom that I had it. I was not left crippled or anything as a child...I have Mild Scoliosis and Acute disc degeneration and Fibro and arthritis. All this is new to me and I am scared. I am a cance survivoir...3 times a survivoir. So how can I beat this if it is Post Polio, and what are the usual symptoms?
I thank anyone and all for any advice you can give me.
God Be With Us All.....kovena

dkirk10152 · 12-11-2004, 03:55 PM

I have ben reading these postings here on this form, and I find myself in the same position as most of you. I am 57 years old and also had polio at a young age, but I had a twin that didnot. I had problems with my right leg and foot, and had to have a brace. and just recently I have found out that it has effected my kidney too. Which is one big kidney shaped like a horse shoe. Just had surgery March, 3td.on it had to retransplant four veins and fix an anurism. I have had to have three ribs removed on the right side because of breaking and not growing back. Got four on the left side now. Have bent to specialist at Vanderbelt Feb. of this year here in Nashville and they cannot give me any answers except it's not cancer. Which is Good, and I am grateful, but that doesn't help the fact that the pain is so great sometimes I feel like death would be a relief. this is some of the things that has happened in the past.Had to have part of my intestans removed because of a blood quit circulating and they ruptured. Three disk removed from my back. So polio has really done a number on me.
By the time the day is over I am useless when I get home from work.
Didn't mean to tell all this when I started, but maby it will help someone els know that they are not alone.
I had to have an operation on my right foot in September 2004. They had to break the ankle reset it and fuse it back togather, and now am recovering at home. Will be three months before I can walk on the foot.This is in addition to all of my other problems. So the past few years have ben bad for me, and I try to keeep my head up, and look on the bright side. I am still alive and working now, but they had to give me a sit down job. and by the first of the year I am hopping and praying that the doctor will release me with no restrictions.

I always say a person should appreciate life. Because without it you are Dead.

[ please carefully review the posting rules - no emails ]

kovena · 12-12-2004, 08:09 AM

My Heart is with all of you in these trying times. I never got to the appt with the Rheumy because I had a 102 fever the first time and a bulldozer could not make me get out of bed, the second appt was for Dec 1st and I did not get my new medical card in the mail yet. The mail comes late here and my appt was very early morn. Out of respect I gave the office a call and let them know I only had my card from the month before and they said I would have to reschedule. Then she said looks like you cancelled once before and I said oh yes I was so sick, she goes on to say that I will have to find another Doctor because I cancelled twice. I tried to explain about the card but she wouldn't budge. I even told her she could call medicaire and they will tell them I am current, but she said she doesn't have time to make all those calls for people. That it was my responsibility to make an appt when knew I would have the card. Who would guess the card would come late. If it is a weekend it usually gets here before the 1st but it did not this time. Well I told her she can go shove it because there are plenty other MDs that are not so rude and I would not care to see your face, for the way you treat people. Then I hung up. I was really devastated in a way but actually grateful in another because I felt really weak that day and did not know how I was going to get dressed all alone or even wash my hair as my neighbor had gone for a few days to Oregon. I get so darned depressed that I cannot even brush my own hair most of the time, and my hair is long, down to the middle of my back. I am afraid I will have to cut it.
My Regular Bone MD said to hold off cutting it because it was so beautiful and that something can be arranged to find a way to get it taken care of. He is such a sweetie. He is about 15 years younger than me and so polite when he wants to be, But sometimes he can be a stickler for things. I am lucky that he finally got the message that I needed stronger meds because when I went to the Oncologist I was in such bad sheape he made me go to the ER and have my meds raised and got me 2 shots of Dilaudid .Now I get 30 mgs for breakthrough pain instead of 10 mgs, and enough for 4 a day instead of 1 a day.It has made a difference.
I am lately having trouble breathing. My lungs feel wet, and it is hard to breathe some times. I find myself gasping for air, and cannot swallow sometime no matter how I try. Whats that all about???
I did not mean to write a book here sorry, but I do not know how to get these feelings out. I have been so sad lately and do not even know why. I cry at the drop of a hat. And No, I already went through menapause LOL! Had hysterectomy for cancer when I was 25 in the 70s. Went through the "I'm a faucet...watch me drip!" syndrome a few years ago. I was lucky(was I) to have been able to keep my ovaries and still went through that part. Sheesh...I was like a fountain...stick an urn in my hands and if I stood there people would throw coins at my feet LOLOL!>!!
My best friend...my roommate, is having health problems. He does 95% of everything around here. Poor guy it keeps him so busy. But he rarely complains and we Love each other as if were Brother and Sister. We had a Romantic relationship for a while, but I don't know, it just did not feel right so that stopped. We have seperate bedrooms. We have talked about it and he feels that it is better to be here with me without the romance, than not have me here at all. Now thats not something you hear very often and I am blessed for having him. But I am so scared. He has not been well and has a disease called Sarcoidosis and I am so terrorfied to lose him. Now look what I went and did, damn tears...another water faucet lately...
I just wish I could do more. I used to cook all the time and always had his lunch ready to take to work...now it is maybe 3 times a month that I have enough energy to cook. He does not cook so I do not eat often. He loves (UGH) Peanut butter sandwiches and lives on the darn things. I wish it were easier for me to do more for him.
Well...I have not been able to drive for over 2 years now and my car is rotting away in the driveway. The rain in WA causes mold to eat cars alive.

Only 70 thousand miles on it. I have just about lost all my independence and it really inhales rapidly.(s*cks)
I had better get off this depressive note because all of you sure have enough on your plates, and don't need to hear me whine and groan LOL! You know that saying...you want some whine with your cheese?!

Now thats funny LOL!
On that note...I wish all of you the most Joy filled Holidays ever...and may God Bless and Keep you all safe..
"Above All Do No Harm"...Lovingly...Jessica/kovena

bharkins · 12-13-2004, 06:00 PM

Roses,

You mentioned that your Dad had emphysema. My husband had polio also as a child. He was twelve years old. Recently he was diagnosed with COPD which the doctor described as a combination of chronic bronchitis and emphysema. My husband was a smoker, but now I wonder if the past polio also played some part in his latest diagnosis.

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