I have a problem with curiosity and I have one question that entered my mind about 20 years ago, and that was "what is the longetivity of a person who has had polio?" I knew it had to depend on the severity of the disease but never the less I still was curious and since this site has thousands of viewers, I thought why not give it a shot and see if I could arrive at a consensus.
The question is: How old are you and how how many years has it been since you contacted polio.
Now comes the difficult part. Since millions have had polio over the years it has to be more selective and so it has to be those that have never walked, never been able to use their arms, or breath unassisted. I have probably left something out in these selections and welcome any additions but I think you see my idea. I know that some people don't want to disclose their age and I understand but I am proud of my age and that I have lived this long after polio.
To start off:
I had polio in 1950, and on the 17th of this month will have survived 64 years my age is 80 on the 3rd of this month and it all has been in the wheelchair.
I certainly hope that any respondents will put me far down on the list. :-))
It's been about 7 years since I read Dr Bruno's book, and I had another book at that time, but don't remember the name - it was not the best, and not pertinent to helping 'me' work through my process.....Dr. Bruno's did. So...I went to Barnes and Noble today to see what is currently out there - there are a few books I might look into that I don't think were available when I started on the PPS journey. Some are expensive, and I would see if the library has them, and shop for used copies of the others.
1) Post-Polio Syndrome: A Survivor's Guide by Richard Shelton (patient experience, trials and errors) and he is in the senior age group as I am.
2) Post Polio Syndrome: A Guide for Polio Survivors and Their Families by Julie K Silver, Lauro S Halstead
3) Managing Post Polio: A Guide to Living and AgingWell with Post Polio Syndrome, by Lauro S Halstead
4) Managing Post Polio: A Guide to Living Well with Post Polio Syndrome by Luaro Halstead, Naomi Naierman, Linda S Halstead .... this one is really expensive, would try the library for it also.
5) The Official Patients Sourcebook on Post Polio Syndrome by James Parker MD, Philip M Parker Phd ..... hmmm maybe this one was the expensive one.
At any rate - libraries are good, and so are used books.
Think I'm going to check out some of these books myself, I'm always looking for things that might help and/or are available.
I live in Columbus, Ohio - if you are ever in the area maybe we could have a cup of coffee!
Nice to hear from you, and take care.
Thank you! I have wrote all these books down, and will look into them... and the library will be the first place I look!
It's difficult to find information on our condition, as we have seem to be forgotten. I will never give up and I know I have long road ahead of me, so I believe knowledge is my key to a well, wonderful life!
Thank you for your time!
And If I am ever so lucky to go to Ohio I would love to have a cup of coffee with you!
Take care and God Bless!
Understand that people our age (PPSer or not) are apt do die from one of three things: Cancer, heart disease, and respiratory problems. And for post-polio folks with significant paralysis you can add in the complications of bedsores and the like.
There is no evidence that the risk of cancer is significantly different for PPSers vs the general population. The risk of heart disease is increased due to inactivity, but PPSers who are reasonably mobile can fight this with appropriate exercise and diet. Respiratory problems are a function the degree of paralysis and also relate to activity and weight, so maintaining an active lifestyle (to the degree possible) and keeping ones weight down can help immensely.
I have seen it claimed that having had polio somehow protects you from dementia, though I don't know how true this is, or how strong the effect is if true. But dementia is a major secondary cause of death in the elderly, primarily by leading to respiratory problems, so reduced dementia could be adding a few years for us.
I would say that if you're 80 and have survived all this time in a wheelchair (and are still in reasonably good health) you've either got some good genes or have made some pretty good choices about lifestyle.
I am just shy of 66 and had "non-paralytic" polio when I was 21 months old. PPS set in about 15 years ago, but I still maintain a fairly active lifestyle. Kidney stones have been a bigger problem for me than the PPS (though my wife complains that I nap too much).
Contacted polio in 1951 in utero, mother was pregnant with me when she contacted polio. Was in Quarrentine for awhile they said I wouldn't survive but obviously I'm 64 now and lived a somewhat normal life until about 10 yrs, ago and PPS hit and its been downhill since then. Constant pain and walking problems. I use a cane for now and am always searching for something to relieve pain and make me stronger. I don't take meds yet, trying natural products.
I thought I answered this before but when I read Cheryl's, I saw that I had not. The first time I read the post I considered myself excluded but on reflexion I realized that if the survey were restricted to people completely paralysed, how could they determine the onset of post-polio.
I am 67 and contracted polio in Los Angeles in August of 1948 at 8 months old. My parents were still at UCLA. I was in Children's Orthopedic Hospital for a month. I have some degree of PTSD from early hospitalization experiences. While I don't remember anything, my mom and dad said they could only see me for an hour each Sunday and that I was at times restrained in the bed or crib I was in. My mom still gets weepy when recalling this particular time. I am told the polio affected my left arm, my stomach muscles (the abs) and both legs. The only complete paralysis is in my upper posterior left arm and shoulder (I am naturally a left hander but had to do everything right handed). Otherwise, like so many thousands of other polio survivors, I cobbled myself together, did a million sit-ups, got rid of the braces and corrective shoes and had a normal, even pretty athletic life. I played football, basketball, and golf competitively. I managed to play intercollegiate NCAA golf while at UCSB.
I spent my whole life "not having polio". It had little to do with my life. I didn't lift weights or do gymnastics. I know that privately I was ashamed of my left arm, even though, with a shirt on no one could see it. It did affect my self-image but only I saw that.
The rest of me was successful by any stretch of the imagination. When I was 55 years old I began to notice, in this order, pain, fatigue, and weakness. I was a Superior Court judge for 25 years and by the last two years on the bench I had a long couch put in my chambers and I took a 2 hour lunch every day. Without a short nap, I could not finish the day. At age 60 I could retire and I had to. By then, I was just too weak to work a full day as a judge.
We (my wife of 48 years) and I have moved to the north San Diego area to be with our kids and grandkids.
Most of us polio survivors have A-type personalities. Please read Bruno's Polio Paradox. Essentially it imparts on us the knowledge that the personalities we developed to cope with polio is absolutely the worst personality to deal with post-polio.
Sorry about going on and on. The survey could ave been answered in two sentences. It just feels nice to be communicating with people who understand.
Forgot to add that I've progressed or regressed, first to a cane, now I have a electric scooter (a Pride Victory) which is a great help saving me steps around the house. I still get out and drive but I limit my shopping to big stores with electric loaner scooters. Travel has become a thing of the past even though I still could manage, its just too much work and trouble for my wife. I can get a trailer hitch mounted carrier for the scooter. I tried to take the scooter apart and load it into my car. I did it but with four spinal surgeries, I really paid the price for three or four days.
I only sleep for about 4 hours a night and sometimes get a nap. I have also noted that all the other quirky things that happen to some post-polio people, they all happen to me to some extent.
For twenty years I fought pain with narcotics prescribed by a legitimate pain doctor. It got, with my addict-like personality, that I was always running out of medicine two or three days before refilling. I finally got tired of this and detoxed completely in June. I hurt more than with medicine but its not as bad as it was. I think I am much less active and have far fewer muscles.