HI EVERYONE I AM KAY I LIVE IN MI I HAD POLIO IN 1954 WHEN I WAS 3 YEARS OLD I FRIST GOT PPS IN 1996 IT TOOK ME ABOUT A YEAR TO GET SO I COULD DO MUCH OF ANYTHING. AND I HAVE NOT BEEN ABLE TO WALK SINCE IN 2002 I STARTED WORKING FOR WAL MART AS A CASHIER THEN IN JULY I WAS HIT AGAIN. I HAD TO QUIT MY JOB AND THERE ISN’T MUCH I CAN DO NOW. I AM VERY DEPRESSED AND HAVE A LOT OF PAIN IN MY BACK AND LEGS. AND MY ARMS SEEM WEAKER NOW TO. THE CONPUTER IS ABOUT ALL I CAN DO NOW. I DON’T LEAVE MY HOUSE JUST CAN’T MAKE MYSELF DO IT. IF ANY ONE HAS ANY SUGGESTION PLEASSE LET ME KNOW.
THANKS, KAY
Hi
Don here polio since I was 11 and now 74. No one left my age anymore…
Hi Kay,
You can find all kinds of info here:
http://www.postpoliobransongoers.com
Also, the BransonGoers are trying to get Oprah to run a segment on PPS.
I’ll let you folks know what happens once I know.
Don
Hi Kay -
Thank you for sharing your story. I honestly feel that others that are
trying to get through the daily drills with life and having to deal with the
effects of PPS can help each other. So it’s very good that you share your
story. The old saying misery loves company!
I was exposed to polio when I was a baby in 1951 but the effects of it
didn’t start to show until I was around 7. My legs grew at different lengths
and I eventually had one leg shortened through the femur bone after a bunch
of debating with doctor’s. That was in 1970. The doctor’s didn’t know much
about any of this back then but the surgeon was convinced it would correct
my scoliosis if the leg was shortened 1-1/4". Well it didn’t and now as a
(almost 56) year old adult, I am suffering the effects of PPS, in my back
and big time in my legs. The past year my legs are really the biggest
problem. I am going to a new doctor this week to see if I can get him to
approve an MRI as it has been years. I have a 49 degree curve on the left
side.
I am so sorry that you had to quit work Kay but you know how this all works,
you have to take care of your body and give in to it and rest. My mind wants
to do so much but my body says no, no. What kinds of problems do you have
with your back and legs Kay as I know you said you can no longer walk. Do
you now have a wheel chair? I do have one and am getting close to using it
but I do rely on a cane a lot. I am trying to avoid pulling out the wheel
chair but know I am heading n that direction.
I was able to retire from the aerospace industry last year at 55. I know in
my heart if I hadn’t been able to retire, I would have had to take a medical
disability with these problems I am now having.
Some of the things that really help me feel comfortable are baths with good
bath salts and lavender. It’s very therapeutic to the joints and muscles. I
also have muscle relaxers that help but the side affect is they can make me
sleepy. I have a bad reaction to pain pills but can take Darvoset, but I
only take that when it gets really bad.
Please feel free to share with me and I will share with you and together
maybe there will be some kind of comfort you can get from our emails back
and forth.
Take care Kay,
Paula
On 9/8/07, shelbysgranny post-polio-cpt5870@lists.careplace.com wrote:
Hi polio here also Don is my name and i am 74
I had polio in 48
I live alone hate that and do not know what medications i should be taken for the pain.
Men do not go to the doctors and i see why.
Don - Good hearing from you!! I take Darvoset for pain but try and not take
too much. Don’t like the way I feel with pain pills. I actually take 1/2 a
pill at a time with food. Also muscle relaxers.
From everything I am reading regarding PPS, we should eat more protein,
especially in the AM if possible. I actually do feel better having a late
breakfast/early lunch of a turkey breast sandwich. The protein gives me a
good start.
There is nothing easy about this, it isn’t for wimps. All we can do is to
take the good days when they come along and deal with the bad days. Wine
also helps relax me! 
Take are Don and thanks for the reply to the care place
Paula
On 9/9/07, DWB post-polio-cpt5870@lists.careplace.com wrote:
Who do you know that has leg problems due to polio?
I think i need a brace.
I hate being alone and this pain in my joints keep me up all night.
Hi Don - It sounds like you really need to see a neurologist (nerve doctor)
and have some tests done. As much as you hate to do that, I’m sure that
something could be done or he could give you something to at least help your
joint pain. I know my leg problems are from the polio, loss of muscle
strength and the horrible joint pain and numbness. At least mine doesn’t
keep me up at night. I feel bad for you Don but you should give in and go
see the doctor. I sure hope things will turn around for you. Maybe a brace
would give you some relief.
Paula
On 9/10/07, DWB post-polio-cpt5870@lists.careplace.com wrote:
Thanks for the information , nice of you to respond so soon.
The pain i have is in my joints , my shoulders and hand.
It is nice finaly to know i am not alone
Don> To: silentman74007@hotmail.com> From: post-polio-cpt5870@lists.careplace.com> Subject: Re: [post-polio] HI> Date: Mon, 10 Sep 2007 12:36:23 -0400> >
Hi Paula, I almost didn’t find this. My comp. put this thru Bulk and I just happened to be scrolling and found it. I also have PPS.I had paralytic polio when I was 3 in 1953.I had surgery and wore a leg brace until jr.high school when I was pronounced “CURED”. I struggled through life always hurting, at numerous jobs and then when I got “old” after starting to work as a Certified Nursing Asst. I had so much pain, I went on a medical leave of absence.I bounced around from dr. to dr. They finally put 2 and 2 together and sent me to a Polio dr. Thank God!! Then, in 2005, I was diagnosed with PPS. I wear a leg brace again and I live off of Soc. Sec. Disability. I have a husband and my children are grown and they are the only proof I have that I actually had a life before PPS.I feel as though I have traveled through a time machine backwards…but so much is explained now about the back pain trying to work, and that I wasn’t really just lazy, I WAS tired when I
worked those hard jobs all those years.And when I wasn’t working, I was sleeping.I was just soooooo damn tired. I feel like I don’t really have a life. I don’t do anything. I just make it through each day and then at night, I think “well, it’s time to go to bed again and I didn’t do anything today.” I hope this is just a phase I have to grow thru. Any suggestions? I do feel kind of lost. Your new friend, Kori G. Sandusky, MI.
Paula1951 post-polio-cpt5870@lists.careplace.com wrote:
Hi,
It is good to be in touch with all of you. I am doing ok. I spend most of my time in a electric wheelchair but am able to get my housework done from it so it is not all that bad. My husband gets me out a lot. We go to the stores that have wheelchairs which makes it easier for him.
I take Elavil for the pain and to help me sleep at night it seems to work real well there are only a few nights that I am restless.
I am used to working also but now I work from the home by doing taxes and bookkeeping my husband and I have been doing this since 1962. I wanted to stay home with the children so it worked out fine then when they got older I worked in an office but now I am agian working from the home.
Take care and we can all make it we can help each other.
Deannie
Hi Deannie !
Yes I agree with you, it is great for us to communicate and be in touch with
each other. Little things we share together could help each other. It sounds
like with all your problems, you are making the most of each day and you
have a wonderful family unit that is very supportive and helpful to your
needs. That is so important.
I was very interested in the pain medication you are taking called Elavil, I
will look that up on the Internet. My problem is I have a very low tolerance
to pain medication, I can’t take codeine or Vicatin but I can take Darvoset.
I only take 1/2 a pill at a time and only after I have eaten. My problem is
I get really nauseous with pain meds.
I am going to be getting a new MRI soon (as soon as the insurance approves
it). I am actually hoping I can have some additional surgery to help my
legs. Seems like the side where I have the scoliosis is pressing on the
opposite side and the pain is quite debilitating. A lot of circulation and
nerve issues. If it would give me a better quality f life, I am willing to
do it. I have had several orthopedic surgeries done in past years so am not
afraid of surgery.
Glad you keep busy with your tax keeping and book keeping. I retired from
the aerospace industry after 35 years of service and thank god for my
pension as I couldn’t work right now the way I feel.
Did you get your electric wheel chair covered by insurance Deannie? Just
curious and interested. I have rambled on long enough, it was nice hearing
from you and hope we can be friends. I am 55 years old by the way.
Paula
On 9/13/07, deannie post-polio-cpt5870@lists.careplace.com wrote:
Hi Kori!
Our problems are so different but in so many ways the same! I have not had
the fatigue problems and hope I don’t but I do feel for you. I guess all you
can do is to just give in to it Kori because it’s what your body wants, at
least right now.
My legs grew different lengths and it really became apparent when I was
around 7. The doctor’s of course, never knew what to do about it except put
a lift in my shoe. The scoliosis continued to get worse as I got older. By
the time I was 18, they decided I needed to have the femur bone shortened,
the surgeon said that this would correct the scoliosis and make me straight,
it did neither. That surgery really messed me up.
I am getting ready to have a new MRI done to see what my back and discs look
like now and why I am in pain all the time. Once that is determined, I might
have some more surgery. But I think it would be a good time to pursue social
security benefits. I am only 55 but perhaps I could get it earlier. Do you
think I should try Kori? It sure would make a difference not to have to wait
until I’m 62.
You are so lucky to have a doctor that knows what post polio syndrome is and
how to treat it. Are you in Michigan or Minnesota? I am in CA and there
aren’t many doctor’s that have a lot of knowledge with PPS. There are some
PHD’s that know and study PPS. There isn’t enough research done to try and
find some help for us.
Kori, thanks for writing and I’m glad you did. Hope we can keep in touch.
Paula
On 9/13/07, Kori post-polio-cpt5870@lists.careplace.com wrote:
Hi Paula, I am so thrilled to have someone to communicate with 
I am going to be 57 in Dec. I have worked all my adult life, sometimes working 2 jobs at a time. So I had accumulated enough hours with the Federal govt. to apply for Social Security Disability.I even had enough that I could have retired (had I been 62). If you pay into the system all your life, you can get Soc.Sec. when you’re 62 , or in my case, collect SS Disability.
I had to have ALL kinds of medical proof, tests and stuff to back up my claims.Paperwork up the yingyang…and I was still denied the first time. I immed. got an attorn. that gets paid after the settlement. We filed an appeal.
Waited 1 year to the day.I got a ‘back-pay’ check for only 5 mo. then a few days later, I got my first mo. check. The attorn. gets his pay right off the top. No hassle there. Then you just have to learn how to live off a set amount. It sucks. I hardly can make ends meet off of SSDis. The year I was waiting, we had to live off of my huband’s SSDis. He’s been on it for 12 years.I always had med. ins. so when I was forced into ‘retiring’, and then I lost my med ins.
I applied for State Medicade.I was eligible with no income of my own. Once I started receiving my SSDis. I was no longer eligible for State Medical because I MAKE TOO MUCH MONEY !! What a crock. I have to pay cash for all my scripts, which are considerable. And we get no State asst. So I hate it. But of course it is better that no income since there is no way I could work anymore. I have a very hard time even walking short distancs independantly. But if you do apply for SSDis. you MUST tell them the very 1st time you speak or write or communicate in any way that you say you have PPS.
There was a law passed in Congress shortly before I applied pertaining to PPS applicants. I will have to look it up in my paperwork and get back to you. Sorry to cut you off so abruptly. I’ll get back ASAP.
Sincerely, Kori (in Michigan)
Hi again Kori!
Very interesting stuff about Social Security. I actually started to fill out
the form on line awhile back then just saved it until later. I want to wait
until I have my latest MRI done and some real medical proof as to how bad
this PPS has become. I am not a bit surprised at the delay with Social
Security and also you having to get an attorney. It’s all government red
tape and we get caught up in the middle of it.
I get a monthly pension from my former employer, fortunately I could retire
at 55. Had I stayed until 60, I would have received more monthly but I
couldn’t work any longer. They relocated out to the desert and I was
commuting by van pool 120 miles a day. Talk about lack of sleep. Up at
3:20am to get on the van pool at 5am, back home at 4:30pm, then to bed by
8pm. I did that for the last 12+ years but worked for Lockheed for over 35
years. That commute was a killer on me mentally and especially physically.
My partner and I have been together for almost 22 years and she has been my
strength. We raised my daughter together from the time she was 5 and she is
almost 27 now and getting married in a month. We are both walking her down
the isle.
I have good days and bad days and just don’t push myself anymore. I reach a
point where I just get tired of dealing with the pain. I know you know how
it is and you have the fatigue to deal with also. I’m sure you are taking
vitamin supplements also which are real important.
One thing I have read a lot about for people with PPS is we need to eat a
lot of protein throughout the day. Sometimes, I will get going so late in
the morning that it’s almost lunch time and I’ll fix a turkey breast
sandwich or have a piece of chicken. I actually do feel better if I eat more
protein. Not sure if you had heard this but I thought I would mention it.
Seems to me I did see a reference to PPS and Social Security. I am a member
of Post Polio International and have donated money on occasion for grant
research they are doing continually. They are a good organization. There are
a lot of good resources on the Internet, thank goodness with have our
computers. I use a laptop and it’s my best friend I swear!
Well Kori, we will chat again soon and I’m very interested in the social
security news you told me about. I hope you have a good day tomorrow.
Paula
Dearest Kori,
I Kori, my name is Linda and I felt I had to respond to your email to
Paula (Sorry to butt in Paula, but know you will understand my friend.)
Kori,
I know where you are at. Many of us have been there are will be maybe
even more than once. To start off I would like to tell you one thing
that has helped me to cope and remember what matters the most. You
are not what you do, you are important because you are!
Many times I have found myself down and feeling like my life has had
little purpose since PPS. Then my phone will ring or an email comes
in and one of my fellow survivors need a piece of information I have.
Since I had to retire my world seemed to have become smaller but I
think what actually happened is that I had to slow down enough to see
what was right in front of me. For me it was kids, other people’s
children who need someone to talk to, someone that could listen to
what their world was like, someone that cared about their pain. And
guess what happened to me I found a my purpose in life.
I still have really tough days/weeks and sometimes months in my life.
I get so down that at times i scream, “Why God? How much more do you
want from me?” But soon some one new comes into my life, a child or
adult that might benefit from what I have been through. And that
encourages me and gives me new inspiration.
So please go ahead and feel the emotional pain if that is what you
need to do right now but then shake the dust from your soul and eyes
and look around. Look around and you’ll find that you still have a
life, pps or not. Find and get involved in your local Polio Support
group, get the support you need and then the day will come when you
find yourself able to give back to the group from your own life
experience. Your life can be enriched during this new stage in your
life. It may not be fun and games all the time but just maybe you
will find a new peace. Polio did not win with us, we survived rather
with no visible effects or in our braces or in our wheelchair. I
believe we each survived for a reason and I know for me sometimes
being an encouragement to my fellow polio survivors pulls me up and
gives me the encouragement that I needed.
Best Regards,
Linda D
On Sep 13, 2007, at 4:08 PM, Kori wrote:
Hi Paula, I almost didn’t find this. My comp. put this thru Bulk and
I just happened to be scrolling and found it. I also have PPS.I had
paralytic polio when I was 3 in 1953.I had surgery and wore a leg
brace until jr.high school when I was pronounced “CURED”. I struggled
through life always hurting, at numerous jobs and then when I got
"old" after starting to work as a Certified Nursing Asst. I
had so much
pain, I went on a medical leave of absence.I bounced around from dr.
to dr. They finally put 2 and 2 together and sent me to a Polio dr.
Thank God!! Then, in 2005, I was diagnosed with PPS. I wear a leg
brace again and I live off of Soc. Sec. Disability. I have a husband
and my children are grown and they are the only proof I have that I
actually had a life before PPS.I feel as though I have traveled
through a time machine backwards…but so much is explained now
about the back pain trying to work, and that I wasn’t really just
lazy, I WAS tired when I
worked those hard jobs all those years.And when I wasn’t working, I
was sleeping.I was just soooooo damn tired. I feel like I don’t
really have a life. I don’t do anything. I just make it through each
day and then at night, I think “well, it’s time to go to bed again
and I didn’t do anything today.” I hope this is just a phase I have
to grow thru. Any suggestions? I do feel kind of lost. Your new
friend, Kori G. Sandusky,
MI.
Hi Linda -
You are not butting in and we appreciate anything any one of us posts to
give us all encouragement. I’m sure Kori would agree.
And you are right about everything you have said in your post. I myself, try
to be positive and find good in every day. I have so many people in my life
that I love and that love me and am glad we are here for each other.
I honestly feel a lot of people outside my immediate loved ones don’t
understand what PPS is all about and what it is I am experiencing. If others
aren’t in pain or have never had real pain in their lives, how can they
relate?
I am praying that my daughter’s wedding day (Oct 14th), I will feel good
that day and will be able to really enjoy the celebration. I love her fiance
to pieces and know it will be a good marriage. I hope my legs will hold up
and see me through and I can walk her proudly down the isle. I just want to
enjoy the day.
Thank you for posting Linda and we are glad to have you a part of the group.
We all need each other for support.
Your friend,
Paula
Hi everyone !
Hope your al having a good day!
I am Louise and i live in Canada. I to live with PPS (1952) I use a cane mostly but in malls I get a wheelchair just to much walking.
My right knee is bad Dr says I need knee replacement but I have put that off for now . My right leg is shorter than the left . I also am having a brace made sometime soon. The cost is a killer. I am also trying to get accessed for a scooter. That would make my life so much easier.
I have read all your stories and see that we all have our good and bad days.
I do fine ,lately that my hips seem to bother me when standing at times.
Fear that sore hips will stop me from walking at all. I had to quit work in 2004 and went on work place disability
. Just couldn’t do it any more. so Now I spend my time doing all that stuff that you never got done when working.
I to remind myself that there is always someone out there worse off than me.
So I keep a smile on my face and enjoy life.
Sure wish the chat room in careplace worked so we could all get together and chat ,would be nice.
Have a good day!
Hi Linda and Paula and all the others, Wow! I just had an actual bonk on the head when I opened my e-mail just now.I am so thrilled to have people that actually know what it’s like going through the acceptance stage, I guess you could say.And I re-read my own e-mail and boy-oh-boy-was I having a PITY PARTY or what?!
Linda you are so right in saying for me to open my soul and eyes…I am just sitting here trying to find the words to express my feelings…I feel soothed…45 min. later…I still feel soothed(Thank-You Linda for “butting-in” )
And Paula, I am still looking for all my PPS stuff containing that law about PPS filing for disability.I didn’t forget about you. I had to do an emergency move in Feb. of this year.My husband became quite ill ( in Dec.06) and was hospitalized. When he came home (in a wheelchair) I couldn’t get him into our farmhouse out in the country.I had to get help to get him in the house and then 2 weeks later he had another seizure and was taken by EMS to Saginaw and was hospitalized again. But when he came home in Feb., I had moved us to an apt, in the city.
No cutting the grass and no shoveling the snow.He’s doing better now, but he has a pacemaker and we really miss the serenity of the country. That’s a whole other chapter.Thanks to you all for your input. I really do appreciate it.
Sincerely,
Kori
Hi,
Wow I was blessed I have not had the eye problems or the drawing on my face
yet anyway and I am 72.
Deannie