#174742 - 12/10/09 02:49 PM
Re: Post Polio
[Re: archer]
|
Sug
Junior Member
Registered: 12/10/09
Posts: 1
|
I, and my neighbor got polio in 1948. She went to the hospital for 2 weeks due to a high, uncontrolled temp. I stayed home with therapy, etc. I had to wear special shoes for a few years, she seemed to have no problems afterward, and I don't remember her having therapy at home as I did. I began using a scooter in 1996, being diagnosed with Chronic Fatigue Synrome, the next year Fibromyalgia, and a few years later with PPS. Three years ago the doctor recommened a power chair as it is easier on the arms. I have the Permabuilt also so I can change my position, etc. My back was broken also in an accient - before I knew I still had problems. I could dance - had problems running.
I can walk inside still but it gets harder - and harder an I only walk to fix a meal or get to the bathroom. Guess I should stop that. Last I heard my neighbor was working as a hairdresser still, but that was about 9 years back. I got the seat that raises up also, and an Braun Entervan so I can stay as independant as long as possible. I love gardening but have a gardener to dig the big holes, and I use the old scooter outside.
Guess we can all suggest things to help each other here, huh? Nice to be with people who really know how it is.
|
|
Top
|
|
|
|
|
#174853 - 12/10/09 09:22 PM
Re: Post Polio
[Re: Sug]
|
nadajoe
Member
Registered: 08/21/01
Posts: 3765
Loc: Middle of the USA
|
I got it in 1953 at age 3. So U do the math. Always in chair and powerchairs since 1969-70. I remember having hot, wet, wool blankets wrapped around me... torture. I can't stand that smell still,,, makes me wanta kill..lol. I did get an early spine fusion at about 10-12.... failed. I was used for training new surgeons.....rat basturds!,,, at KU med center... till I got to be of age. Then I said enough to that and was on the wild side since,,,, doing whatever, whenever. Still on the wild boy lifestyle but slowing with age... damn! ,,,joe..
|
|
Top
|
|
|
|
|
#174923 - 12/11/09 01:26 PM
Re: Post Polio
[Re: nadajoe]
|
paradocs
Member
Registered: 11/20/04
Posts: 2323
|
I remember those awful hot, wet, wool packs, too. I was in a hospital in South Texas without air conditioning. In the summer it WAS TORTURE!
|
|
Top
|
|
|
|
|
#175052 - 12/13/09 02:08 AM
Re: Post Polio
[Re: paradocs]
|
Greggg
Junior Member
Registered: 12/12/09
Posts: 3
Loc: Somewhere in Texas
|
I'm a visitor here so I hope you don't mind if I weigh in although I'm losing the use of my legs thanks to neurological difficulties. My girlfriend (girl?) got it around 1959 at age 3. She was on braces and crutches through high school and is in a motorized chair now. I can't count the number of surgeries but there were a lot. She scared the heck out of me by showing me the picture of the iron lung she was in for 1 day! Paradocs...I'm from S.Texas and know what you mean about the summers. At least the hospitals have air conditioning now.
|
|
Top
|
|
|
|
|
#186797 - 05/12/10 04:02 PM
Re: Post Polio
[Re: archer]
|
bluejay
Junior Member
Registered: 05/12/10
Posts: 2
|
I got polio in 1976, when I was 11months old when I lived in India. I am 34 now, I haven't got PPS yet. I wear long leg braces on both legs, use crutches. I am on energy conservation mode now, ever since I was advised by a doctor @ National Rehab, Washington DC. I use mobility scooter when I need to walk more than 100 ft. MD Dept of Vocational Rehab helped me pay (partly) for a scooter lift that was fixed in my car.
|
|
Top
|
|
|
|
|
#186798 - 05/12/10 05:05 PM
Re: Post Polio
[Re: bluejay]
|
MerryA
Member
Registered: 01/10/04
Posts: 10887
Loc: Tennessee
|
Hey bluejay. I am Merry and I caught polio in 1962. Started feeling PPS in the early 80's. Some people don't experience PPS - you may be one of the lucky ones. 
_________________________
"I was curious. Since I'm not a cat, that's not dangerous."
- Greg House
76.22.172.94
|
|
Top
|
|
|
|
|
#192405 - 09/08/10 04:15 PM
Re: Post Polio
[Re: MerryA]
|
YosemiteSam
Member
Registered: 05/20/00
Posts: 5386
Loc: No. Calif. (SF Bay Area)
|
Bumping this for a new member.
ßoß
_________________________
 Bob
|
|
Top
|
|
|
|
|
#192548 - 09/12/10 05:46 PM
Re: Post Polio
[Re: spinner]
|
Stormi
Member
Registered: 08/17/00
Posts: 500
Loc: USA
|
I don't have Polio but I have CP and it's exactly the direction my health has taken.. braces crutches ... major fatigue... manual wheelchair then power wheelchair at 35.. (multiple surgeries before the age of 16.. Do any of you have pain? I have Chronic pain and the fatigue has gotten worse as I have gotten older despite the fact that I haven't walked since I was 19 ..I don't have to do anything to be tired and if I went out with friends all day and then went out at night I'd pay for it for days. I could barley walking at 14 but kept going and getting weaker even with therapy ... until I just couldn't do it anymore...
I'm thinking a type of CP syndrome (I have noticed that the friends who never walked or only walked a tiny bit aren't in pain and are fine. Only the ones that walked like me with multiple surgeries have gone down hill like me even with the best of medical care...
_________________________
"Only those who dream the absurd, can ever do the impossible" -Hellen Keller
|
|
Top
|
|
|
|
|
#192559 - 09/13/10 07:36 AM
Re: Post Polio
[Re: Stormi]
|
Winterwhite
Member
Registered: 06/01/09
Posts: 34
|
Hi Stormi,
The progression of decline sounds very much the same. You expend a lot of energy, over use the muscle power you have left and ultimately depleted whatever reserves you have left.
I remember when I was a patient and when I worked at a rehab facility that many of the polio patients and SCI patients ultimately gave up their efforts to walk because it wasn't as functional as sitting in a chair and it took everything of of them.
I don't know what type of CP you have but I remember the uncontrolled effort took a lot out of them.
At this stage of my life I pace myself daily and never do more than I have too. That has become my reality. I am so thankful that I did the many things I did before I was 45. Today it would be an impossibility.
Good luck and stay positive. Mary
|
|
Top
|
|
|
|
|
#193490 - 10/02/10 07:37 AM
Re: Post Polio
[Re: Winterwhite]
|
TobySav
Junior Member
Registered: 08/04/10
Posts: 1
|
Hi all my fellow post-polio friends. I got polio in 1929 at the age of 2 and a half. Went through it all - casts from head to toe, brace on my face, braces and crutches. Got through it okay or so I thought. Started going really downhill so slowly, that I didn't even realize it. Now, at 83 I am totally confined to a wheelchair. It's as though I don't know what is happening to me and it depresses me so much. I would like to find a friend or friends with whom I can correspond with, so that I don't feel so alone. Toby
|
|
Top
|
|
|
|
|
#193502 - 10/02/10 03:07 PM
Re: Post Polio
[Re: TobySav]
|
ladyheart
Member
Registered: 02/24/00
Posts: 3392
Loc: on a pathway, somewhat smooth,...
|
Hi Toby, you are not alone let me assure you, there are a few of us floating around here now and again. If you want you can e-mail me at dmkid@att.net anytime, can't fix much of what you write about but sure can relate, and can listen.
take care,
Donna
|
|
Top
|
|
|
|
|
#193515 - 10/02/10 06:29 PM
Re: Post Polio
[Re: ladyheart]
|
soda
Member
Registered: 08/26/07
Posts: 4726
|
welcome toby! we have a few pps ppl pq
_________________________
 67.87.81.12
|
|
Top
|
|
|
|
|
#193578 - 10/04/10 10:27 AM
Re: Post Polio
[Re: YosemiteSam]
|
john55555
Member
Registered: 03/31/06
Posts: 531
Loc: "'cross the alley from the Ala...
|
Thanks, Bob! I'm Johnny and have been visiting off and on for a few years. Not so much lately. If anyone needs to discuss PPS, I'm your man! Just let me know. Are you aware of the new that came out of the 2nd Mexico International PPS Convention? This couls be huge..let my look for it!
Check this out while I look for the rest:
1. The study proved gamma helps PPS.
2. The study shows we have fragments of polio protein in our spinal cords, which causes our immune systems to continue to battle the polio virus that was there. This and not dying neurons is what is causing PPS by weakening our immune systems. Our body is still in the fight mode to kill off the tiny polio fragments in our bodies. This does not mean we still have polio, just remnants of the old virus our immune systems are still attacking, causing further degeneration.
3. And even more importantly, they have found a blood test to tell if you have PPS! Dr. Brian Joseph
The details will all be released as soon as the peer review process is complete.
Hi, Alma and Shari..We (the polio community as a whole) need to get the word out on this once it's confirmed. If it is indeed a fact a blood test can confirm we have PPS, this is amazing and important! It would eliminate the need for us needing our first wheelchair from SSD, to go to some questionable "doc in the box" rehab center run by people with questionable credentials..an experience I have gone through. This "clown" told me to walk as best I could without crutches, using just my aging leg brace. "Wall walking" is one of the worst thing a PPS'er can do! It invites a fall. Because I Could "wall walk" for a few feet, this idiot concluded I be denied a power chair, as I had enough "Upper body strength" to get around the house and ok'd a manual "scooter!" Scooter? the application clearly stated power Chair!
If a blood test can be taken as proof that we have PPS, that's a major breakthrough that every PPS organization should start pushing!
|
|
Top
|
|
|
|
|
#193583 - 10/04/10 12:33 PM
Re: Post Polio
[Re: TobySav]
|
Winterwhite
Member
Registered: 06/01/09
Posts: 34
|
Hi Toby,
I'm new to NM so we're both starting at the same place. I contracted polio in 59 at the age of 17. It was the tail end of the epidemic. I have been confined to a wheelchair all of my adult life but I know the feeling as you loose more and more of your function. Don't get depressed. Find some friends here and enjoy the stories. Feel free to say hello. Mary
|
|
Top
|
|
|
|
|
#193587 - 10/04/10 12:58 PM
Re: Post Polio
[Re: TobySav]
|
paradocs
Member
Registered: 11/20/04
Posts: 2323
|
You're not alone. There are still a bunch of us tough survivors around -- although, like you, we may not be able to do as much as much as we once could. With experiences like you have been through I'm sure you can give aid and comfort to those who are just beginning to face some of the problems we went through even if they are not polio related.
|
|
Top
|
|
|
|
|
|
