Post-polio syndrome, lots of pain & weakness

Post-Polio Syndrome
#26

Hi Paula-

I just found your e-mail and thought I’d better say HI. I just included you in my e-mail to Linda.To be honest, I’m glad you’re so involved with the Polio Network and are aware of the law in place of us.Now I can relax about trying to find my misplaced papers(chuckle-chuckle). :slight_smile:

I’ll tell ya, this website is a royal pain in the butt, trying to get around in it.So I always just reply to an e-mail directly.I feel sort of a special bond for you cuz your’s was the first e-mail I found in response to the PPS shout out with the CarePlace site. I thought no one would EVER e-mail me.But all of a sudden I find I’m not alone out here.

I appreciate you sharing your life with me.I really needed to hear from others. I am not sure if I am comfortable with Polios and Normals.Have you heard the label we have of being a Polio?I guess it stems from when I worked in the nursing facility. You couldn’t refer to the person as “the broken leg in bed 2” or the “Heart attack” etc. Do you understand what I mean?Or am I rambling?

Maybe I am still angry and upset about having to accept my condition of PPS now after being told I was cured in Jr. High. I don’t know…I am tired and I’m going to bed. Thanks for getting in touch. I’ll give ya a holler later.

Friends,
Kori

#28

Good Friday Kori, Linda and other new friends!

Before I forget to ask you Kori, when in Dec is your birthday? I am also a
Dec baby, the 27th. Kind of a “fun” time of the year for a b-day, just
thought I would ask.

My God Kori, your poor husband has really been through a lot, God love him
and you both for always being there for each other and taking care of each
other. That’s what life is all about, looking out for each other through
thick & thin. It must be very different for you both to be away from the
beautiful country you were used to but it sounds like this is all the better
for both of you.

Thank you for taking the time to look for the form for disability and PPS,
no hurry, you do it when you get a chance and feel like it. This might be
something that could also benefit others that visit the care place with our
problems.

And Linda is right about looking beyond PPS and the daily problems. I know
myself that I get depressed at times but it is not very frequently, thank
goodness. It is more the days I have a lot of pain and I get to the point
where I just get tired of dealing with it. So I have a good cry and I move
on.I always try and remember the old adage that there is always someone else
worse off than I am.

I hope you both had a good day and I enjoy our friendships.
Paula

On 9/14/07, Kori post-polio-cpt5870@lists.careplace.com wrote:

#29

Appreciate your email Kori and I WILL find the PPS info, I know I saw it out
there and you’re right, it is a pain to find this kind of stuff sometimes.
I’ll take a look see and post it on the care place once I do.

Actually I think you were really aware of the terminology being in the
nursing field. I really wasn’t aware of the normals and the polios but I
find it interesting. Please share more stories as time goes on. How old were
you when you were in nursing?

Have a good nights sleep my friend and we will chat later. I am glad you and
I connected.
Paula

On 9/14/07, Kori post-polio-cpt5870@lists.careplace.com wrote:

#30

Hi guys,
Hope you don’t mind me jumping in like this. My name is Pamela and I had Polio at the age of 22mos. I was put in a brace until I was 6yrs old.I have never been able to walk flatfooted on my left side and my left leg is shorter and smaller than my right leg. I always considered myself one of the lucky ones. I wore long pants or long skirts and heals and pretended I was just like everyone else. I never let my polio stop me from doing anything I wanted to do. I joined pepsguad in highschool. I had 5 children.(one set of twins) No one was going to tell me I couldn’t do everything everyone else did. I am now 53. And I have a doctor telling me that all that stuberness made me old before my time. And the more I push myself to do now , the shorter the time I can do anything. The reason I ‘m telling you this is my Dr. told me that in 20yrs. of dealing with polio he has had only 2 people that didn’t do just what I did. So I’m beting most of you out there did the same. We pushed ourselfs untill we couldn’t go any more. Let others make us feel like we were lazy if we couldn’t keep up.And we walked around with all that guilt because we couldn’t be Wonderwoman (or man). Well we can let go of all that now! We wern’t crazy, we wern’t lazy, and we did the best we could. Now it’s time to take care of ourselfs ! No more guilt ! We gave our all and then some. So don"t feel bad about putting number one first.
We derserve it! I’m not saying not to give back or be productive. What I am saying is to do it at your pace. When you feel like it. And don’ t worry about what others think. They haven’t walked a mile in your shoes. OK, I’ll get down off the soapbox now. I hope this helps someone out there feel better.

#31

Hi Pamela!
I, like you was very active in school. I played soft ball, basketball, never
let anything stop me. I didn’t have the severe physical problems until about
the age of 40, I am 55 now so I lucked out (as I call it) for many years.
But all that time I still had severe scoliosis but never let it stop my
activity. That’s why it’s so hard for me to accept times when I just need to
rest now but as I get older, I am finally accepting it. My legs were
different lengths, I had the long one shortened when I was 18, they said it
would correct the scoliosis and I would be straight but it didn’t happen.

Welcome to the message board, I hope we can help each other along the way.
We have quite a group sharing and it’s growing every day it seems.

Take care Pamela,
Paula

#32

Thanks for the welcome Paula. Sounds like we have a lot in common. Looking forward to talking to you some more.

#34

Kay don’t leave just ignore DWB I don’t know what his problem is but I would
love to keep in touch with you. Please don’t leave stay with us we need
each other.

Darlene(Deannie)

#35

Hello Louise,

My name is Len and I am from Michigan. It is the same for me. I had polio in 1952. Now have PPS. Your experience as far as how polio affected you and is affecting today is very close to my experience also. That is somewhat unusual I think.

I had polio in achiles heel and I have what is called a spastic flat foot. My right leg is shorter and weaker then my left. My knee also is a problems as well as my hips especially the right one.

I walk with a cane and use a wheel chair also in Malls or hospitals. My daughter has a friend who had a used electic wheelchair. That she gave to me. What a blessing that is!

Now I can go do more things with my children and Grandchildren. Well that is my situation thank you for letting me share my experience.

Many Blessings,
Len

#37

Hello to all,

I have been sitting here at the computer and reading all of your emails and believe me I understand what you all are talking about. My PPS came upon me 12 years ago in full force I am 72 yrs old now. I am doing ok could be much worse. I wear braces and am in an electric wheelchair all of the time but can walk short distances only on crutches like from the front door to the car. I was able to get my wheelchair at no cost so I hope all of you that need one can do the same.

I take elavil to help me sleep at night since I can’t take any strong pain medication. They tried me on it and I warned them I could not take it and I ended up like a zombie.

I also take CoQ10 which you get whereever they sell vitamins it helps me my doctor recommended it as always check it out first.

My home is a one floor plan with no steps and the doors are plenty wide for my wheelchair to go thru. Please don’t get discouraged you are not alone we are all in this together and it helps to talk about it somehow it makes all things easier when you know someone else is making it thru the same problems.

Got to go I live in Ohio and it is about time for the Ohio State Football game and I am a fan.

You all take care

Deannie

#38

Hi,

I am having a good day I always say if I get up and put my feet on the floor
it is going to be a good day because I am still alive.

My sister had to have both her knees replaced but she is doing fine now.

I had my full growth at 14 when I had polio so I have not had too much
problem just the normal pain of getting older. I am still waiting for the
golden years.

You have a wonderful attitude and I agree you can always find someone worse
off if you only look around.

Darlene-Deannie is my nickname
----- Original Message -----
From: “purrduck” post-polio-cpt5870@lists.careplace.com
To: bwisterm@columbus.rr.com
Sent: Saturday, September 15, 2007 4:11 AM
Subject: Re: [post-polio] HI

#39

Hi,

Hey if I remember correctly they told us when we first had polio to push so
we would not loose our strength now they are telling me to conserve it to
perserve it so we slow down.

I am now in an electric wheelchair most all of the time I can still walk
with crutches but very carefully my balance is not good at all.

Hey keep in touch good to hear from everybody.

Darlene

#40

Hi again Deannie -

I’m glad your sister is doing well and on the mend from her knee
replacements!

It’s funny you mention my atttitude, I guess I got that from my mother, a
beautiful person inside and out who has been gone now almost 13 years.
What’s funny is, there are some people that complain about every thing
negative that’s going on with them, seeing the negative in everything and
never seeing any good in anything. To my friends and relatives, I try and
not dwell on my problems, I try and keep the pain and the problems to myself
so a lot of people really don’t know how severe the problems are. Of course
I have to say Deannie, and I’m sure everyone on this board would agree with
me, there are so many people that don’t know, haven’t heard of, or, aren’t
aware of anything relating to post polio syndrome except our partners,
husbands, or wives. There is no general awareness for the most part when it
comes to PPS and it’s really sad because there are so many of us baby bomers
that are going through this. I wish more people I talk about PPS about,
would go on the Internet and get a clearer understanding about it. But it
seems most people that, if it doesn’t affect them directly, they aren’t
interested. Does this all make sense to you too? It sounds like I am on a
soap box but I’m not, it just feels good to share with my new friends on the
Care Place what I am going through and all of you are going through. It’s
like an extended family.

You keep in touch my friend and continue to have a good day. And we will
both keep our attitude and be thankful we can put our feet on the floor!
Paula

On 9/15/07, deannie post-polio-cpt5870@lists.careplace.com wrote:

#41

HI I HAVE A SCOOTER THAT I USE I CAN ONLY TAKE ABOUT 5 OR 6 STEPS THEN MY LEGS START SHAKING. SO I USE IT ALL THE TIME YES HOT BATHS DO HELP A LOT BUT THEN IT IS HARD TO GET IN AND OUT OF THE TUB. I TAKE VICODIN FOR PAIN BUT IT NEVER REALLY STOPS .I HAVE A BRACE FOR MY LEFT LEG BUT IT HURTS TO MUCH TO WEAR IT AND IT IS TO HEAVY FOR ME TO LIFT AND WALK WITH IT. I ALSO TAKE DEPRESSION MEDS IT SEEMS TO HELP MY BACK WHEN MY HUSBAND RUBS IT. HOPE TO HEAR FROM YOU SOON
KAY

#42

HI DON I TRYED TO GO TO THE WEBSITE YOU TOLD ME ABOUT BUT IT WOULDN’T LET ME JOIN I’M KINDA NEW TO ALL THIS SO CAN YOU TELL ME WHAT IM DOING WRONG IT SAID I WASN’T PUTTING THE CODE IN RIGHT BUT I WAS THANKS KAY

#43

okOKAYYYYYY I HEARD ENOUGH…I CANT STAND IT NO MORE…FOR THE LOVE OF GOD…DIDNT ANYONE TELL YOU PEOPLD ABOUT THE POST POLIO SITE???/
DR BRUNOS SITES ON HARVEST DOT DOM…GOT TO ENGLEWOOD HOSPITAL DOT COM…

DR BRUNO WROTE THE SSO CRITERIAL FOR PPS…GOOD LORD…SS DOES NOT CARE ABOUT YOUR DISABILITY;;;;;ALLLLLLL THEY WANT TO KNOW IS…AFTER YOUR DISABILITYY, WHAT WORK CAN YOU DO? THEY ARE ALLLLLLL ABOUT WORK…NOT ABOUT YOUR DISABILITY…GOOD LORD LEARN THAT IF YOU LEARN ANYTHING …

I CANT LEAVE LINKS TONITE…BUT DAMN…JUST SEARCH DR BRUNO…ENGLEWOOD , NJ…LEARN…AND ST OP BEING SOOOOO NAIVE

WAKE UPPPPPPPPP ALREADY

LOVEYOU ALL…PPS HERE TOO…GOD LOVE YOU…BUT WAKE UP AND LEARN…PLEASEEEEEEEE

LOVE YA…

ME…KATHYP82

shelbysgranny post-polio-cpt5870@lists.careplace.com wrote:

#44

HI

yes U R right SS does not care about the PPS people but soon thay will. We are going to get better Med care and thay will know we R here to stay for a very long time so hang in there.

cliff

MY GOD BLESS YOU TODAY WITH LOVE AND HAPPINESS

Catch up on fall’s hot new shows on Yahoo! TV. Watch previews, get listings, and more!

#45

thankyou for the reply. back at you have a good one.

Teresa

#46

hi don, you are right polio can be a very lonely world no one understands what we go though every day just to live. but these groups are the best friends i have ever made they know becasuse we have all been there.but you should find yourself a good dr. if the frist one don;t understand keep looking there are meds and things out there that do help. i can’t walk over five or six steps then my legs get very shakie and down i go lol so i have a scooter that helps more then i can say i can get around my house and don’t have to worry about falling i would love to be your friend you can e mail me any time here though careplace or kay_marrison@yahoo.com would love to hear from you and by the way 74 is not that old lol your friend kay

#48

Sounds good I think we should spread the word about PPS as much as possible.
Too many don’t realize what is happening to their bodies.

Deannie

#51

hi deannie, you are so right about all we went though as kids. it hurt to do the dumb exercices that i cryed most of the time when i was doing them. and not only at home but at school too!!! 3 times a week. now they say it hurt us and didn’t even help even made it worst. could make you mad if you think to much about it lol but life goes on but i don’t do any pt my dr talked me into it and the pt guy thought i had i rib out of place i had to have 3 shots in my back so i could even move. so never again no matter how nice the dr ask lol.
hope you are having a good day
kay