#194637 - 10/24/10 10:38 AM
Re: Post Polio
[Re: paradocs]
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moonshadow
Junior Member
Registered: 10/23/10
Posts: 2
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When I had polio is not entirely clear, but by the symptoms I developed in the aftermath, doctors determined that I most likely had it as an infant or toddler (1953). I fell all the time, walked on my toes, had pain in my legs, and could never perform athletically at school. I thought that all kids fell all the time and that your legs grew stronger as you became an adult, so I never told my mother. The school called her when I was in first grade to tell her. That started years of therapy, surgeries, braces, casts, wheelchairs, crutches, etc. At 16, I was finally discharged from outpatient therapy and was told I had made as much progress as I was going to. I was 16 then. They surmised I had polio, but it was missed by my mother. (Like she missed the falls, too?-My mother is a tad negligent in the maternal instincts).
When I was in my early 30s, we moved to NH and I started taking my kids hiking. I began noticing an increase in weakness in my legs. After only ten minutes on a trail, I would have to manually lift my leg up over anything higher than five inches or so. By the time I reached the top the last time I hiked, I was crawling on my hands and knees. I loved hiking. An astute pcp told me I had post polio syndrome in 1990, but he never did an EMG. While it isn't definitive for post polio and is only used to confirm loss of nerve conduction, I finally did have one done in 2002, an EMG was done, and the neurologist said it looked like an "old polio".
I am now on disability and in an electric wheelchair for anything longer than 100 feet or so. I still fall frequently and in fact just tore the cartilage in my knee in a bad fall that resulted in a concussion. I may need surgical intervention for that knee.
I lost my 20 year career as a RN due to post polio, I lost my beloved hikes, I can't dance anymore, my husband left me last year for someone else, I lost my home as a result of him divorcing me. I now live alone in a one room cabin in the mountains in Vermont; it is all I can afford. I live on a small stipend from social security and alimony. My children have pulled away from me, too, as they can't deal with my disability. They don't like me to talk about it. That hurts the most.
Actually, what hurts the most physically though, is the constant pain and numbness in my hands and lower arms and feet and lower legs, but especially the legs and feet. It hurts everywhere else too, but not as intensely. I have what is called central pain syndrome as well. Does anyone else have that? It is horrific pain, it is incompatible with life and it has robbed me of my life. What's more, I can't afford a wheelchair van, so I am entirely housebound except for MD appointments, for which I use my cane. I have to be in a wheelchair and can't use it! I am on both morphine and oxycodone for the pain, but it is largely ineffective for this type of pain, and only masks about half of it. I live in torment at times, especially when I build up a tolerance to the medications to which I am, after three years now, addicted. Then we have to mess around with dosages again. (If it weren't for my faith, I would just give up) When I am being tortured by the central pain, at times I scream it is so bad. Thank God I am out in the middle of nowhere and no one can hear me.
I have to suffer alone and there is no one to talk to about it. I am making new friends here in VT, but I don't want to scare them away with my horror stories of central pain. I only see them in church since I am housebound and my cabin is so small that people feel uncomfortable being in it!
My life has been robbed by post polio, pain, and the cost of living in America (i.e., can't afford van). I lost everything due to this disability. I am trying to stay afloat and keep above it all, and while I am learning how to be disabled, I must also learn how to deal with it alone, and to live alone without any help at all. So, that is my story.
Edited by moonshadow (10/24/10 10:49 AM)
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#194677 - 10/25/10 01:02 PM
Re: Post Polio
[Re: moonshadow]
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paradocs
Member
Registered: 11/20/04
Posts: 2323
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I'm not a diagnostician, and even if I were, I would be foolish to try to diagnose anything from a post. However, I do have some ideas you might want to consider.
Was MS/MD ruled out in your case? They can also cause the weaknesses you began to experience in your childhood. I believe one of them is more prevalent the farther north one goes.
As for being an RN, I have known a couple of post-polio RN's who, in spite of being confined to wheelchairs, were able to work in administrative positions in hospitals and nursing homes. (I also know a C-5 sci who is a licensed, working OT). If you could find such a job, it would give you a greater "sense of worth" and also probably enable you to get a van.
I have known only one post-polio with the pain problems you describe. Her doctors diagnosed her pain as fibromyalgia and got her to a specialized pain clinic which improved her quality of life greatly. Have you been evaluated by such a facility?If not, it certainly could not do any harm. Also check out the fibromyalgia treatments on Google.
Maybe some of these ideas will help. I hope so.
Good luck.
Edited by paradocs (10/25/10 01:04 PM)
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#194731 - 10/26/10 07:52 PM
Re: Post Polio
[Re: paradocs]
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ladyheart
Member
Registered: 02/24/00
Posts: 3392
Loc: on a pathway, somewhat smooth,...
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Hi moonshadow, another PPS'er here and share the PPS pain issues, as well as the muscle weakness and fatigue. I would agree with paradocs about checking into whether there could be any other reasons for your central pain that might be "treatable".
I went to a PPS neurologist a couple of years ago, who ran a series of tests to determine if my pain issues were from another cause, in other words, not to assume it was only PPS as it's cause.
In my case, it turned out to be just PPS and not much could be done other than medications which as you say prove to be less and less effective over time, and major life style changes to limit or greatly reduce activities which contribute to increased pain.
I posted on your other thread a piece I wrote on pain a few years ago as well.
please take care,
Donna
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#194928 - 10/31/10 08:21 PM
Re: Post Polio
[Re: ladyheart]
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Oregonrose
Junior Member
Registered: 10/31/10
Posts: 1
Loc: Oregon
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Moonshadow,This is my first post. I had polio in 1942 and after about 6 months began walking again.I lived in a small Texas town and did not have access to any rehab type facility so had no aftercare. I had most of my residual in my left lower extremity with a lot of muscle loss and later developed a sort of "club foot". I was 7 y/o when I contracted polio and at age 14 had surgery on my left foot and achilles tendon. I was never in a brace but walked with a very decided limp. As with most post polios I was determined to not be kept down.Went on to become an RN which was probably my downfall as far as developing PPS - too much stress on weak muscles. Worked 40 years in all.Was diagnosed PPS in 1989 and by that time was using a cane as I fell often.I then was working in a doctor's office as an advice nurse so could sit most of the time.I retired in 1999 and by that time I was using crutches as muscles became weaker. Now at 74 am using a walker but should probably be using a powerchair as I have developed severe shoulder arthritis from all the overuse and overweight.I can certainly empathize with the pain problem. Have been searching for ways to cope with mine. As ladyheart says we have to make lifestyle changes and give ourselves the OK to regulate our activities and accept help when needed. This has been my biggest problem as I feel I am having to give up so much of my independence.
Hang in there,
Rose
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#194929 - 11/01/10 06:59 AM
Re: Post Polio
[Re: Oregonrose]
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Foghorn_Leghorn
Member
Registered: 09/19/10
Posts: 102
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Welcome to New Mobility Rose, I am a para its good to hear from another Oregonian.
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#194931 - 11/01/10 09:43 AM
Re: Post Polio
[Re: Foghorn_Leghorn]
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ladyheart
Member
Registered: 02/24/00
Posts: 3392
Loc: on a pathway, somewhat smooth,...
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Welcome Rose, there are a few fellow PPS'ers around here as you've seen so far. Sharing stories and tips on adaptive adjustments can be very helpul.
You might also check out powerquad.net as well, it's where many of the folks here hang out too.
take care,
Donna
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#196534 - 12/23/10 09:01 PM
Re: Post Polio
[Re: Sandee3535]
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dnmetz
Junior Member
Registered: 12/23/10
Posts: 1
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Sandee,
I also got paralytic polio from the vaccine. I had two doses of the sugar cubes. The third sugar cube I was given right before I started school was the one that gave it to me. Nothing from the first two doses. That was in August of 1959. Did you get it from the vaccine? I have hear of a couple that have.
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#196543 - 12/24/10 02:30 PM
Re: Post Polio
[Re: dnmetz]
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paradocs
Member
Registered: 11/20/04
Posts: 2323
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I understand that the Sabin (sugar cube) vaccine was finally withdrawn because the virus was live, but supposedly too weak to cause the disease -- like the claims made for the nasal mist flu vaccine. Unfortunately that did not turn out to be the case for some people.
If the Salk (injected dead virus) has caused polio I haven't heard of it.
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#198703 - 05/03/11 02:38 PM
Re: Post Polio
[Re: john55555]
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Donna J
Junior Member
Registered: 05/03/11
Posts: 1
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I got polio in 52 (2 years old), paralyzed on whole right side. Sister Kenny worked on me with no residual paralysis. Used braces and crutches. Both feet operated on to stabilize, turned outward. Hip dislocated at 9, did a chop job. First manual chair at 7. Last year had to go to a power chair. Effects of PPS 26 years ago. I can relate, Johnny, from a Mustang to a Jazzy. Still kickin though and not giving up even though some have wanted me "in the system" to "take care" of me. They wanted to put me into a retirement home but I am still functional. Ha ha seems like that is a PPS trait - I'll Show THEM!
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#201950 - 04/05/12 02:46 PM
Re: Post Polio
[Re: john55555]
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MeersKat
Junior Member
Registered: 06/27/07
Posts: 2
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Hi Johnny,
I also got polio in 1949. I was 8 months old. Most of my life I used braces and crutches, and just like you, I've had to start utilizing an electric wheelchair in the late 90's. My arms have become so worn out from moving and lifting my legs that somedays I have difficulties lifting a cup of hot coffee to my lips. However, I'm in a good spiritual mindset. I had a tough time in the beginning adjusting to further disabilities, but I'm doing okay now. Depression, fatigue, lack of an adequate income and menopause kicked my butt for a few years, but I am much better off presently. And I hope you are OKAY as well.
Kathy
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#201951 - 04/05/12 02:47 PM
Re: Post Polio
[Re: john55555]
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MeersKat
Junior Member
Registered: 06/27/07
Posts: 2
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Hi Johnny,
I also got polio in 1949. I was 8 months old. Most of my life I used braces and crutches, and just like you, I've had to start utilizing an electric wheelchair in the late 90's. My arms have become so worn out from moving and lifting my legs that somedays I have difficulties lifting a cup of hot coffee to my lips. However, I'm in a good spiritual mindset. I had a tough time in the beginning adjusting to further disabilities, but I'm doing okay now. Depression, fatigue, lack of an adequate income and menopause kicked my butt for a few years, but I am much better off presently. And I hope you are OKAY as well.
Kathy
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#201963 - 04/07/12 04:43 PM
Re: Post Polio
[Re: YosemiteSam]
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cbal-craig
Member
Registered: 04/06/00
Posts: 17675
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Bumping this for a new member.
ßoß
Funny when Ronda is around we have a flood of new members but what can I do? 
Trolls can be anywhere I'm hoping to get some new members but I suspect most of these people are Ronda or her friends.
Get a clue avory seek help
Edited by cbal-craig (04/07/12 04:46 PM)
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