HealthBoards

HealthBoards (http://www.healthboards.com/boards/)
-   Polio (http://www.healthboards.com/boards/polio/)
-   -   Any polio survivors out there? (http://www.healthboards.com/boards/polio/488022-any-polio-survivors-out-there.html)

Janet W. 04-06-2007 05:52 PM

Re: any polio survivors out there?
 
Hi all- Hang in there all you PPSer's, I too am a Polio Survivor and have been dx'd with PPS- I had polio starting at age 4. All I can say is if you are having weird sypntoms please find a True Polio/PPS doctor- this is VERY hard to do- also purchase the 'Polio Paradox' book it has alot of info. and help.

I can no longer work, I am ok with that it took me a long time to start listening to my body BUT you have to. So if you are feeling much much older than your years and in pain with muscle weakness and fatigue or just feel like you always have the flu- please don't just blow it off.

Best to all- Janet'Polio Survivor '56

barber71 04-14-2007 01:04 PM

Re: any polio survivors out there?
 
Hi, I too had polio at the age of 4. I was diagnosed with PPS about 15 years ago. I immediately took measures to protect what ever strength I had left. I feared the prospect of being dependent on anyone. Everytime my polio doctor sees me she tells to keep on doing what ever I'm doing, because it is working. I also read the Polio Paradox and keep it next to my bed. It has become my polio bible. My lft thigh was effected to the point that I must use my arm to lower and raise myself from a chair. I never knew that my rt side of my face, neck and shoulder were effected until I started losing muscle. I find it scary and interesting as I watch that happen to me. My rt arm & shoulder are failing gradually and I am now dropping things. It is always a surprise when it happens. How are you doing? Barber71

Janet W. 04-18-2007 06:14 PM

Re: Any polio survivors out there?
 
:) I am doing ok... It is going to take some doing and bumpy roads- but got to keep striving..... I also have muscle atrophy in my left quad-

Yes, that book is remarkable and the Dr. is wonderful!!! Unfortunately, it is hard to find a true dr. that really believes in PPS or does not want to be bothered. So I got a chance to go on a journey and see Dr. Bruno and team-all treated me with such compassion- truly dedicated in what they do.

Now, I will be following up with my regular Dr. and someday hope to go back to see Dr. Bruno- I can no longer work- sigh- I think that is hard but I know, I have plenty of work here at home with a very sick hubby and I MUST take care of myself first... (That is the hard part)

Rest and Be Well Janet(I don't come on this post alot-but pop in now and then):cool: ;)

lpiilani 06-16-2007 04:13 PM

Re: any polio survivors out there?
 
thanks for your story.....I am just suffering the effects of the polio I had at age 15.....thought I had recovered well, a little residual fatique and weaknes but all in all pretty good. Now I have a decided return to the old weaknes and discomfort in my legs and arms......have you found anything that helps? I have just started taking Polotin drops and will let you know tha reaction in 60 days.
May the Force Be With You....Ginger

Paula1951 06-28-2007 09:15 AM

Re: any polio survivors out there?
 
[QUOTE=lpiilani;3048520]thanks for your story.....I am just suffering the effects of the polio I had at age 15.....thought I had recovered well, a little residual fatique and weaknes but all in all pretty good. Now I have a decided return to the old weaknes and discomfort in my legs and arms......have you found anything that helps? I have just started taking Polotin drops and will let you know tha reaction in 60 days.
May the Force Be With You....Ginger[/QUOTE]
Hi Ginger - I am new to the message board and am gaining a lot of support from this message board. In the past year, I have had extreme difficulty with my legs and hips. My legs at times, go numb and I also get the spasms or cramps. I am experiencing more pain almost constantly. Very difficult to walk. Can you tell me any more about the Polotin drops? I know you have only been on them a short period of time but I would be very interested in your progress after taking this.
I live in SO Calif, will be moving to San Diego shortly. If anyone knows of a PPS doctor in San Diego, I would love to know anything that can help me. I am also a member of PPS International and get their directory of doctors lsting. Thank You and take care of yourself and thanks to you and others for the support messages. Paula

kath1946 07-06-2007 01:05 PM

Re: any polio survivors out there?
 
Hi had polio at the age of 2 now 60 and copeing well but now have cancer so just thought to share but the word is keep smiling
kath

louise50 07-08-2007 05:54 PM

Re: any polio survivors out there?
 
I am new to this. I have pps and would nilk to know more about the Polotin drops. I have never heard of them. I am having lots of problems and some days it is hard to deal with. Louise

ted4753 07-23-2007 05:49 AM

Re: Any polio survivors out there?
 
Polio at the age of 6 - give a few weeks - in 1953. Diagnosed with PPS in late 1999 and in denial until 2002. I was given a perscription to return to braces and refused to make the appointment. I had a few falls that increased in fewquency over the next couple of years. I was tripping over the lines in a parking lot. I was fortunate not to break something, but it was just a matter of time. I was then fitted in early 2002 with the two AFO's ordered earlier. I did not want to return what I had left behind when I was 16 years old. They pick up my toes and the falls have all but disappeared. They have kept me mobile and now I know how foolish I was not to do it earlier. Ted

suzeeq2 07-23-2007 06:49 AM

Re: any polio survivors out there?
 
hi i am new to the group am 51 & got polio when i was 6 weeks old. got diagnosed with pps in my 30's. have been going to a chiropractor for 30 years & the adjustments help tremendously with pain & challenges on my nervous system that occur quite often. don't know about politin, but chiropractic care comes highly recommended by me, you might want to strongly consider it. do you have "weirdness in your brain" ---- that is my biggest challenge on a day to day basis when i've over done or lack in sufficient sleep. talk to ya' soon i hope ! susan

ted4753 07-24-2007 03:28 AM

Re: Any polio survivors out there?
 
Are you talking about brain fog? Yes, it is sometimes hard to concentrate and stay in context of what I am doing. Frustrating feeling fo me. Susan, you had your polio so young and it has been a part of the way you grew up. I have a few memories of "before polio" and I wonder if that made it harder on me. Did you have to have braces as you grew up? Were you able to leave them behind? I was able to leave them behing by my choice when I was 16. That was the begining of my "after brace" time in my life -it lasted for about 39 years. Now I am in the "braced again" time. Time marches on, at least for the time being. Ted

suzeeq2 07-24-2007 11:25 AM

Re: Any polio survivors out there?
 
brain fog would be it -- don't yet know polio survivors "lango", as i have never been in contact with any , up until now. my mother did not want to bring me back to "crippled children's hospital" ,after 1st visit ,in new orleans because she did not want me arround "those kind of children" .... she tried to hide me & protect me, i guess ---- it was a very hush hush thing.. & the so very poor memory ability that i have --- it's sooooo frustrating when amongst others & cannot remember details in current events,etc. (even though i've stayed up with that particular event, for example, & can't stay in the conversation & just nod my head to show my interest) brace until 10 then had 3 surgeries to cosmetically correct my foot & leg & to be able "beautiful" brown orthopedic shoes imagine that on a pre-teen who's trying to be pretty!! so i'd take them off & put in purse then put penny loafers on until some boys wanted to see why i always carried my purse (i had forgotten to leave it on shoulder & set it down & oh no what humiliation they laughed & threw 'em up in the air ------ one more embarrassment on top of ALL the others.... but in afo in my 20's because my tendon fusion had not lasted & foot started to drop again ----- don't wear it for past several years, as all 5 or 6 braces (kept trying for comfortable one at different companies) give me blisters than callouses & my gait is way off when i wear it. susan

suzeeq2 07-24-2007 11:30 AM

Re: any polio survivors out there?
 
hi janet i was stricken in '56 also. how old were you ? i'm interested in the book you mentioned --- could you tell me who the author is ? thanks susan

Janet W. 07-24-2007 06:34 PM

Re: Any polio survivors out there?
 
Hi there - The book I was referring to is "The Polio Paradox" Great book for Polio Survivors and for people with other illnesses... It is written so you can understand it which is a plus in my book.

I was born in 56 but had polio in 1960 - I was 4 years old. Have a nice day..

;) Janet

hillbillywife 07-27-2007 12:21 PM

Re: Any polio survivors out there?
 
Just registered on the site. I had polio at 18 months, I think. My mom wouldn't talk about it much. When I was diagnosed with pps in 1994, I tried to talk to her about it and she was very standoffish. I recently had to take early retirement due to my symptoms. My pps dr recommended applying for ss disability in 2003. I fought him and continued working. Then when I finally gave in and applied last May, SSA denied me. I'm waiting to hear what I do now.

Financially, we are in a tight. We have had to adopt grandchildren and while I love them dearly, I feel very anxious about them. If they didn't have us, I don't know what would have happened to them.

I'm feeling very powerless and have lost control of my life..........

suzeeq2 07-28-2007 01:29 PM

Re: Any polio survivors out there?
 
hi janet i know exactly what you mean about the standoffishness -- same thing with me i got polio at 6 weeks of age , & 3 surgeries at age 10 to get me out of brace on left leg ---- had lots of phyical therapy at hospital & home (exercises to strenghten leg & hydrotherapy). i felt so isolated because my 2 sisters got to do whatever they wanted , while i sat all alone on side the bathtub with leg in the whirlpool water for it seemed an eternity every single day ---- now, at age 51 i know my parents were doing the absolute BEST they knew to do & verbalizing (this polio thing) was not my famiy's strong point . so it became "the way" for me too , until recently. i also went thru the daughter & 2 grandchildren coming to live with us for several years, then just 1 grandson stayed for 2 years, then decided to move with his mother , after he saw there was finally stability in her life. it was very, very intense as i was working along with giving them "my all" . was even rear ended in bad car accident that took me 4 years to come out of. anyway, there's alot to say about this time, however, i knew they NEEDED us, but that did not help my strength to hold out or to get stronger . my faith , lots of praying & resting lots helped me get through. as for finances, have you applied for any type of financial aid --- can you qualify ? hang in there susan


All times are GMT -7. The time now is 10:08 AM.