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Old 05-17-2008, 08:07 PM   #1
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gail45 HB User
Talking I'm not alone anymore

Hi I am a 62 yr. old polio survivor who doesn't know anyone with polio or the post-polio syndrome. Their doesn't seem to be any doctors in my area that know very much about it EITHER. I WOULD LIKE TO KNOW WHAT OTHERS ARE GOING THROUGH. I HAVE BEEN DISABLED SINCE I WAS 5 YRS. OLD, BUT THINGS ARE GETTING WORSE. I RAISED MY FAMILY WITH NO HELP AND NOW I CAN'T EVEN TAKE CARE OF MYSELF. I NEED A LOT OF ASSISTANCE. SINCE I SPENT TIME IN AN IRON LUNG, MY BREATHING IS AGAIN BECOMING VERY COMPROMISED. I GUESS THIS WORRIES ME THE MOST, I DON'T KNOW HOW MUCH MORE I AM GOING TO LOSE. I WOULD LIKE TO HEAR WHAT OTHERS ARE GOING THROUGH AND WHAT SOLUTIONS THEY HAVE FOUND. GAIL45

 
Old 05-17-2008, 10:35 PM   #2
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Janet W. HB User
Re: I'm not alone anymore

Welcome Gail- you are not alone... So sorry to hear about what you are going through - It is hard to find doctors that know. I had suggested to one gal to contact Dr. Richard Bruno, he is chairman of The Post Polio Institute in NJ...

he also wrote a book"The Polio Paradox" - another PPS doctor is Julie Silver MD- she is in Boston- wrote Post-Polio Syndrome-A Guide for Polio Survivors and their Families...

Are you using any assistive devices at this time? Please try and contact these Polio Doctors and maybe they can steer you in the direction. I would search and find out as much as you can on PPS- the damge the Polio Virus did to us is making us age faster than people our age. We are only working with half our neurons and some of those are burned out...

Glad to meet you, maybe someone else here has more info. for you.

Hugs Janet

 
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Old 05-18-2008, 02:59 AM   #3
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tazkc1 HB User
Re: I'm not alone anymore

welcome gail,and glad you have joined us here...i did just what janet suggested,i wrote to Dr. Bruno and he answers back every time too...i am new to this PPS and only learned of it about 3 months ago,so i wish i could help you...it sure makes it hard when doctors arent familiar with polio these days,and us polio people are crawling out of the woodworks now with new problems...i started with my primary care doctor,then went on to an orthopedic doctor,who referred me to a Physiatrist and a Neurologist,so i am even now still in the process...i am still working though...i would do what janet suggested and write to Dr. Bruno if you have no doctors there that can help you...

janet,i went to the brace doctor thursday,and he likes to do as little bracing as possible,so we're trying just a wrap around knee support,to support my knee and see if that works first,before he has to do any bracing,because this thing goes inside your shoe,and then we would be getting into the mechanics of my foot,and beings i've already had problems with those orthotic inserts,we'll try this way first...and i agree with this too,because that was my concern on this brace,what it would do to my foot then...also,i think maybe this increase on this Neurontin is working,because i've not had the excrutiating pain in my leg for awhile now,but have a little pain,just enough to let me know its there,but the physiatrist said the Neurontin wouldnt take away all the pain,so that explains why i still have some pain...the foot pain is always there though,to the point that i hate getting up to walk on it,if i dont have to...i am on vacation in about 4 weeks again,so i'll be able to get some rest...well i hope everybody is doing well,and i hope gail that we all can help in any way we can,and you are not alone here...love to ya'll, cheryl

 
Old 05-18-2008, 08:50 AM   #4
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ronnie53 HB User
Re: I'm not alone anymore

Hi Gail and welcome, Polio has affected all of us in different way, and now with PPS other parts of our body that were not affected by polio are now being affected. I can remember the iron lung from when I was at warm springs Ga. I never was in one but, I know this can be very scary not knowing what is happining to us. There is a large PPS CLINIC in Tampa Fla, and this is all they specialize in.

There are not a lot of doctors that will not take us because little is known about pps. Janet said to contact Dr. Bruno and this will be a good start as he might know someone in your area that might be able to help you. You are not alone here we are with you and will be here. We are suvivors and each of us are trying to find the answers we need to help us understand what is going on, and why not many Dr. are willing to help us. God bless you and keep fighting. Ronnie

Last edited by moderator2; 05-18-2008 at 07:29 PM. Reason: do not post search instructions to find websites - as per the posting policy

 
Old 05-18-2008, 09:29 AM   #5
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gail45 HB User
Re: I'm not alone anymore

Hi Ronnie Thanks For The Reply And Information. I Will Do Some Reserch But I'm Pretty Much Limited To My Area As I Am On Medicare And Medicaid, And Also A Fixed Income.. Thank You Again For Your Reply It Is Nice Talking To Other People. Gail

 
Old 05-18-2008, 09:45 AM   #6
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gail45 HB User
Re: I'm not alone anymore

Hi Janet, Thanks For Your Reply. Iwill Do Some Reserch. Iuse An Electric Wheelchair To Get Around. And A Bi-pap At Night Which Assist Me In My Breathing. I Am On A Program In My Area That Entitles Me To Hire My Own Assitants. Thank God For This Program. I Am So Happy To Be In Touch With Pps Survivors. Gail45

 
Old 05-18-2008, 09:57 AM   #7
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gail45 HB User
Re: I'm not alone anymore

Hi Tazkc1, Thanks For The Welcome, Your Right Everyone Thinks That We Are All Dead.. When I Mention Polio People Say What's That. It Makes Me Laugh, Even Some Doctors Don't Know What Pps Is. They Always Ask Me If I Had A Stroke, Unless They Are From India Where Polio Is Still Prevelent. Hope You Can Work Out Any Problems You Might Have With Your Braceing. Thanks Again Gail

 
Old 05-18-2008, 12:36 PM   #8
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ronnie53 HB User
Re: I'm not alone anymore

Gail there is a post polio outreach program in your state (post polio outreach of connecticut) you can look them up on the internet. Ronnie

 
Old 05-18-2008, 01:46 PM   #9
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Janet W. HB User
Re: I'm not alone anymore

Hi Gail - Let us know how you make out... There is some help out there- and Thank God for the internet - there is alot of info. wish I could give you some of the sights - but check out what Ronnie has given you....

I think the more we know ourselves is the best medicine we can give ourselves when it comes to PPS.

Cheryl - glad you are having some kind of brace- now days they make so many different ones to fit our needs- not like when we had the initial Polio- Isn't it strange how Polio affected us different in so many ways and now PPS affects us, too in so many different ways. But no matter what we are going through There is someone out there who knows and can give great advise..

Welcome again, Gail Hugs Janet

 
Old 05-18-2008, 02:25 PM   #10
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crochetqueen HB User
Re: I'm not alone anymore

wecome aboard Gail. I know we're all glad to hear from another survivor. I see you're a couple of years older than me. I also am in a power chair and couldn't make it without it. I have a lot of knee pain and think I'm starting to have muscle spasms in the back of both legs above the knee. Have an appt. Tues. with the orthopedic. Don't know if muscle relaxers would help or not. Its just dreadful to put on my brace to go anywhere. I'm sorry to hear you're having breathing problems. I'll gp ahead and speak for all of us and tell you we are always here for you if you want or need to talk. This board has helped me mentally more than anything other than prayer. Going to try and make it back to church tonight talk to you later. Love you all, Phyllis

 
Old 05-20-2008, 08:02 AM   #11
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danal84 HB User
Re: I'm not alone anymore

Gail your right not to many people even doctors that understand polio. It scare me a little, I am only 23 and if I get PPS when I am older maybe there will be no doctors for it. If some body my age ask what happen I just tell them I had a virus when I was a baby and it paralyze my leg, if I say polio they just say whats that.
Dana

 
Old 05-20-2008, 01:31 PM   #12
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Janet W. HB User
Re: I'm not alone anymore

Hi there sweety - I was wondering how you were doing? How is that wonderfully Hubby of yours? Hope all is well with the children.

I would not worry about the PPS, hopefully they will find a cure or prevention to follow.. I cannot see how they could totally stop doctors, will all the new virus's that have cropped up and some resemble Polio- Hopefully more doctors will come about..

Hugs to you- Take the best care of yourself now- Janet

 
Old 05-20-2008, 08:57 PM   #13
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gail45 HB User
Re: I'm not alone anymore

thank you for the welcome.

 
Old 05-20-2008, 09:03 PM   #14
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gail45 HB User
Re: I'm not alone anymore

hi danal that is a good answer, my 3 yr. old granddaughter is just realizing that her grammy is different, and i'm not sure what i will tell her. i didn't expect to encounter people younger then fifty who had polio. i thought only us older individuals were left.

 
Old 05-20-2008, 09:06 PM   #15
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gail45 HB User
Re: I'm not alone anymore

thanks for the info. i will check it out.

 
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