finally a place to be able to talk to someone with the same problems.. I got polio in 1938 at the age of 2...(go figure my age) haha... I had it from the neck down. This was before the Kenny treatment when polio was called "Infantile Paralysis" and children were isolated until they found that they were not contagious..There was a lot of experimenting in those days, so I had 8 surgeries on my legs which did nothing to fix them.. But with therapy and lots of prayers by family and friends, I did recover enough to get around with a profound limp and weakness in both legs... My arms took over and held me up all these years.. And I thank God for every one of those years.. I raised a family (a little slower than most).. but raise them I did with the help of a wonderful husband....About 20 yrs ago, weakness became more pronounced and I started falling at the least little movement.. The pain and twitchings were so uncomfortable, especially at night...So here I am back on crutches again... I found out about PPS through an article in Readers Digest many years ago...I had to explain it to the docs because at that time there was nothing known about it.. I also found a support group about a half an hour from me.. But, one by one these wonderful people had to drop out... and the group closed... I am still getting around with crutches... but my arms are very weakened because of them.. Each day, I can get up, I count as a blessing...Oh believe me there are days I feel sorry for myself.. I call those days my P M S days... Pity Me Sydrome... Thanks for listening to me...
The Following User Says Thank You to Dodie3736 For This Useful Post: peterzab (06-29-2011)
Hi Dodie! Been on the board a long time but not lately. Love the new stories! I love the P>M>S> days. I have plenty of those. I had polio at ll months old in 48. I've had over 20 surgeries and I'm in a P.C. and wear a long leg brace and cruthes to get out of the house but like you feel blessed every day. It could always be worse. I too have depended on my upper arms for strength and boy they are quickly failing me. Good talking to you and hello to all my old buddies. Hope everyone is doing fine. Love ya
Hi, I am new here too. I had polio in 1959. I do have a Doctor in MA that studied PPS. I use a canadian crutch, so that it doesn't cause a weakened condition in my under arms. You should look in to that. <edited>
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Hi CherPPS... It's nice to hear from you... not too many people answer... I do use 2 canadian cruches... but my arms have gotten weaker from all the years of use.. lifting me up and setting me down..(and I ain't that skinny lol)...plus I have arthritus of both shoulders and a torn rotator cuff...Orthopedic surgeon can't do anything for me except have me do some exercise... I am way older than you are and thankful that I still get around..not too many docs know what to do for it so I take it 1 day at a time.... I used to go to a heated pool for exercise... but after a year, DUH, I realized it was making me more fatigued... so I had to give it up..
Tell me a little about yourself... I have 5 children... one as a matter of fact was born in 59... I did good for a long time with just a weakness in both legs.. by the time my youngest was 15... I started feeling the ... well you know all that... We live in PA now.. raised the kids in N.J. and I was born in Brooklyn, NY... we have 10 grandkids & 11 great grands... I am indeed blessed. keep in touch... God bless you... Dolores...
Greetings to you all. I am new to the site and in the process of doing research to what all is out there for 'the forgotten children' that survived polio. I contracted polio at age 3 halloween day in 1951. (what a trick!!) Never supposed to have walked again, but had two unbelievable parents and one super fantastic orthopedic doctor. I did walk again, and eventually without braces for a fair part of my life. Very grateful. October 1, 2008 was my last official day of work - finally gave up the ghost, accepted the facts and applied for disability - my timing was great and it went through the first time, thank goodness.
I've seen some questions on here that I had last year, and I can tell you one of the best things I did was educate myself. Found a book, The Polio Paradox by Richard Bruno - wow, what that book took me through. I whole heartedly believe that EVERY polio survivor should have this book and read it. It helped me to come face to face with myself, confront things long ago buried, see how I got to be the person I am, and provided a lot of medical information, not only that would be good for a physician, but things that I could understand too.
In visiting doctors, I learned to ask if the doctor was not familiar with PPS to ask them to read up on it BEFORE my visit - and when I found the one doctor that did know, I knew that he KNEW what he was talking about because of my research - he reiterated right back to me the things I had learned.
Dodie, the twitching is something that I have begun to notice in the last year, and wondered if it was PPS related, you answered that question for me. Thanks.
I've learned no magic pills, no treatment, no cure the only thing we can do is conserve our energy/strength in order to preserve it. If you exercise in the normal sense, don't, it will actually backfire on you, may seem to get better for awhile, but then it comes back, and it is worse. Learning to conserve and not push myself has been (and is) a really tough one for me.
So sorry this was so long, but it is great to touch base with other survivors.
It was nice to hear from you too.
I never had children and I always blamed the drugs used to cure the polio but now I see others have had kids. I do have 3 step kids and a grandaughter. I just started to work part time because my doctor wants me to work no more then 6 hrs a day, then go home and nap then exercise before I continue my evening. My work does not understand or cut me any slack at all. I about ready to look into disability. I live in Rhode Island. I am always in pain. The polio has weakened my legs and my back, but I go on and try no to complain.
God Bless you too
My name is Cher. I had polio iin 1959 at the age of 4. Unlike you, my parents could tell me nothing about it. My Dad is deceased now and my Mom just tells me she could never remember anything! (??)
I am having a real hard time working and they just don't understand. I would like to go on disability. Could give you give me any advise as to how to get the claim approved the 1st time?
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Mercy, had a lot of trouble getting back in to be able to post again
but i'm here now and username and password seem to be working well - yippee.
Dr Bruno's book "The Polio Paradox", for me, is a MUST for us survivors, sometimes you can get it used on some of the book sites, it is worth saving the pennies for!!
Cher, i would be delighted and honored to help in anyway i can with the application for disability. I did do it myself, online. I started out by making a list of my ADL's that i have trouble with. ADL's are activities of daily living, such as walking, standing, sitting, cooking, washing dishes, taking a bath or shower, shopping, cleaning, etc. The biggie for me was being honest with myself, i.e. 'of course i can sweep the floor' -- in truth, yes i know how to do it, but what happens when you do it, truthfully it is a chore to get the sweeper out, yes, i have to stop every 5 minutes to rest, yes i cheat and will sit in the chair or on the couch and sweep every where i can and then move -- truthfully, no - i can't sweep. I can't do it the way i used to.
I put a lot of it down at one time, but kept adding to it as i came across things and the 'oh there's another one' set in. Keep in mind, when they talk about activities of daily living, they are referring to how everyday normal people do them (and maybe how we used to), the tricks and shortcuts we use to accomplish things are only 'normal' to us
Once I had all the info together, i set up an appt with my primary care dr, and he filled out the paperwork for short term disability thru my work so i could take care of appts and whatever i needed to do to get this under way. He was not familiar with PPS, but he did do some reading on it per my request prior to the appt. He wanted me to see an ortho, which i did, and he came in the arms and legs crossed and i knew he did not believe, and he didn't, told me my issues had 'nothing to do with polio' - he was right, but he was wrong and i'll never see him again
Then my family dr and i discussed neurologist and i asked him about a physiatrist, and i wasn't too keen on the neuro and he didn't know of a physiatrist so he referred me to Dr Lewis Seeder in Westerville, OH who's specialty is physical medicine and rehabilitation - he was the one who sat down and told me all the things that i had found in Dr Bruno's book, and Dr Seeder is the one I used as the specialist for disability and i believe he had that hugist impact on it going through the first time.
I had a sedentary job, so it was difficult for SSD to understand why i couldn't do it - but #1 you have to get to work first and be able to get back home (snow and ice caused huge issues) #2 if you run out of energy, work doesn't care, you can't stop and take a nap.
It took about the whole 6 months for the determination to go thru, and i was lucky that i had short term disability from work to help me financially through that time, and a brother who was able to help the last 3 months when my STD dropped to 50%. I qualified for long term disability thru work, but they require you to apply for SSD and when that is approved they subtracted the SSD from their amount and i'll get the difference from that until i'm 65.
OH, BIG thing is, you can not be working when you are in the application process.
Please, if you have questions, or anything, - i'm delighted to be here to help.
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Duh I just noticed the time at the top of the post... boy see what age does to you...How are you... Tell me a little about yourself... I think I'm old enough to be your mother, maybe grandmother... I've had polio since 1938 when they called it Infantile Paralasis (s).. I retired twice because of it... in 86 when my job of 13 yrs closed down... I was able to get on dissability automatically...(I feel so bad for you folks out there that are having a hard time getting dissability).. and went back to work in 90 doing the same type of work... by 95 my arms were getting weaker and I couldn't lift up the units I worked on...although they were not really heavy... I just couldn't move them from station to station...and of course, no one understood...I really went into a depression because of it... but decided it was not like me to be depressed... so I lifted myself up and dusted off and got back into life again..With a great husband and fabulous kids to help push me along... I'm doing okay....
Dodie, how funny your e-mail was, i am sitting here now just smiling, which is a very good thing. Yes, i am 50 and i had polio in fall of 1960 at 18 months of age. Started having nerve and muscle pain in 1996 and can i tell everyone it sucked!!!!!! The one good thing that came from all of this is i found my love for dogs. I never ever would have and animal in my house if i was still working. I try to tell my sister they are missing out on something special. Tell me about you your thanksging plans. Talk to you later, teresa
Hi again, Teresa... aren't animals especially wonderful... they do make one's life complete... we tried 3 times to have a dog when my kids were young.. but you know how puppies can be... rambunktious...and they always tripped me... especially when I was holding a baby.. so we had to let them go...which broke the kids hearts... better that than me on the floor all the time...I got around okay but you could knock me over with a feather...hahaha...but we always gave them to good families...
When our youngest daughter, at that time 13yrs, old brought a kitten into the house without my knowing... I just notice that the cans of tuna were dissappearing faster than usual..and I was the only one that ate tuna because I'm always on a blinkity blank diet...I found the kitten after about 2 weeks when I went to put the girls clothes in their room.. which they usually did... I told them they would have to let her go... Well beg they did and I gave in... but told them.. If she trips me just once... out she goes... well believe it or not, we had Tanya for 14 yrs... and never once did she trip me... It was like she knew... and when the kids grew up and left home.. Tanya stayed with us until she got sick...Now you know the rest of the story.
We all have our storys... funny or sad.. and its good to share...It's nice talking to someone who is going thru the same thing I am going thru.. my friends really don't understand, even my doc doesn't understand.. so I tend to keep my pain to myself...This is a good site to talk... talk to you soon,
HUGS Dolores (Dodie)
Hi again Teresa... You did ask me how I was doing for thanksgiving... I'd like to shoot the guy that came up with the idea of the phrase.. "The Golden Years".. yeah right... between all the aches and pains... there is also forgetfullness... Well we are having Thanksgiving at a friends house... and celebrating it on the Sunday after with our children in DE because they both work on Thanksgiving..
We only have 2 children near by..in DE which is about an hour &1/2 from us...
1 daughter in Colorado... and she is your age 50... and 1 in Kansas... age 47.. and youngest son in Fla... age 40... see I told you I was old enough to be your mother....Talk to you soon... HUGS Dolores (Dodie)
Hi dolores, i have a hate and love relationship with thanksgiving, love to eat it, hate to cook it and clean up. Do you hate having your family not livclose to you? I lost my mother in 2003 and my father 14 months later. I miss them so much, i could never pay them back for all them did for me. I have 3 older sisters (who have really stepped up and help me out) and 1 younger brother (who really was a pain in the but growing up) we have a special bond because we were brought up together. I am so glad to have a family, i never had any children but do have a step son age 21. Are you still able to walk and drive and do you remember the pain you experienced when you first had polio? I will talk to you later, my 90 pound boxer and 12 pound malti-poo are both trying to get on my lap. Teresa
Hi Teresa.... I hate having my family so far away... but the girls call me at least once a week... and the grand kids keep in touch on line... as a matter of fact, my daughter (Kansas) and her daughter & family were here for a visit in June... I hadn't seen her since 06..when we took a car trip out west for a month to visit them,my daughter and grands in CO and my sister in MO and friend in AZ.. of course there's not much I can do anymore... my husband,(God Bless him) takes care of everything... and he is 83... but when the girls come over, they take over to give him a break... I kinda supervise..lol.....I walk w/crutches and use a scooter to get around stores... I still drive... w/hand controls..I got my first set of hand controls 34 yrs ago, when all the kids and their friends chipped in for them for our anniversary... and I won't give that up..as long as my hands & forearms work.. ... the doc told me to get into a wheelchair but I'm not ready to give up just yet....that's why they call us "survivors"...
I don't remember the pain at the beginning... just what my mother told me.. she said I was just shy of the iron lung... so I've come a long way, baby...lol
Thank goodness, I only have a cat... I don't think I could handle a 90pd
boxer on my lap.. now the malti-poo I can.... take care of yourself.. talk to you later... HUGS... Dolores