Post Polio Syndrome

• By MarieTwinTubes
• Posted September 13, 2009 at 3:04 pm
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Hi, spiritlove.

I was diagnosed with PPS in 1993. I am trying to maintain a balance between conserve to preserve and working to my limits. I think the biggest thing with PT's is to establish right away whether they know and understand PPS. I have found some to be too aggressive. It's an individual matter of staying in charge of our care.

A
I was diagnosed with PPS in 1993. I am trying to maintain a balance between conserve to preserve and working to my limits. I think the biggest thing with PT's is to establish right away whether they know and understand PPS. I have found some to be too aggressive. It's an individual matter of staying in charge of our care.

So you have a support organization.
www.atlantapostpolio.org is the support orginization I belong to. In the links if you poke around in the newsletters, I have written several articles.

Where were you affected most. I had bulbar and respiratory, so my main issues are breathing and swallowing. I manage with lots of mechanical help and am active. I'll look forward to hearing from you again.

Cheers for life and breath. Marie

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• By spiritlove
• Posted September 14, 2009 at 2:40 pm
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Dear Marie,

I've read some your other responses and discussions and love your attitude.
My left leg is very weak and i have interstitial lung disease with very minor fibrosis. Sometimes I have difficulty catching my breath yet lung function tests show no problems. I also have Systemic Scleroderma which has badly effected my gastrointestinal tract.
I have been sickly since I was 2 years old and needless to say have seen more than my share of treatments.
Strange thing is it took months of therapy to get me to talk about the Polio!
Because I was so ill in 2003, a rheumatologist in Hamburg NY agreed to see me when my primary dr. couldn't diagnosis what was happening.
The dr. was 84 years old and only took cases that noone else could figure out .
He spent houfrs in research and testing before diagnosing the two conditions. Wheels began to turn and he proved right on all counts. Thanks to his work I reached a point of living again.
Even though I knew I had learned to walk over again and had been in special classes because I couldn't go upstairs in school I couldn't remember what was wrong.
I thought the PPS diagnosis was nuts. All my adult life I've wondered why I can't use crutches. Stand up and pass out. I finally asked a woman I grew up with if she remembered me having Polio. She replied we never knew what was wrong with you but, the teacher would say "Charlene will be gone for awhile and we will send her nice cards." (I hated those cards, when I was able to attend, the kids were brutal. When I wasn't they'd send loving statements about how they couldn't wait until I'd be back!)
She also told me when I came back I had wooden crutches and another girl had aluminum ones. If she fell down they all ran to help her but had been told if I fell they couldn't as I had to learn to get up by myself.
I know in my heart my parents did what they were told was best and explains a lot of things that I endured over the years. Because of mom I walked again 3 times when drs. said I never would.
Have you read Dr. Bruno's book "THE POLIO PARADOX"?
I will go on the website you mentioned tomorrow. I have promised my husband I will limit my computer time.
I really appreciate your input.
spiritlove

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• By MarieTwinTubes
• Posted September 15, 2009 at 2:30 pm
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Hi, Spiritlove.

You are another testimony to the fact that we as polio survivors have had to make our way often while facing doctors who do not know and understandd PPS. Thank goodness for the older doctor who took you as a patient.

I am amazed as I read each new story at what was endured by polio survivors as children. I was blessed in not being being the recipient of the cruelty that some of you experienced. God bless you in your continuing journey. Yes, I've read Dr. Bruno's Polio Paradox. Dr. Halstead also has some good work. I thinkj it is so significant that research has shown that we are over-all a driven people. We have to be!! :)

Take care, be good to yourself! Blessings, Marie

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• By spiritlove
• Posted September 15, 2009 at 6:59 pm
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Amen to that! Never thought of myself as Type A until I got into counseling.
Had a really rough day and of course it brought up the old "I can do it attitude" instead of taking the day down.
Worries my husband that I'm getting too involved with these groups. After 2 years of being cutoff from most people it just feels so good to talk to others.
So far I haven't found anyone in Kalispell with any of my problems. I heard there's a Fibro support group but when I asked no one here is willing to take me to a meeting.
It's OK now I've found Inspire. Probably easier since I'd hate to impose on someone.
spiritlove

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