Hi all... It's nice to hear you all communicating... we are all in the same boat and like you Jim, I won't give in to the wheelchair... My arms have been getting weaker and weaker but the crutches still hold me up... I don't do much walking..because of the weakness... BUT I do have a scooter to go to the stores with, hand controls and a lift on the back of my car so I can still get out by myself... My husband (83) (God Bless him) is my rock... he is always there for me... altho sometimes I need some alone time... so out I go... and I know he is worrying until I get home...He took over the cooking and all big jobs around the house as well as the outside jobs... but I still do what I have to... AND THEN I REST a lot!!! lol....It's great when we have a soul mate who understands what we are going thru.....don't get discouraged Cher, just do what you can and your hubby will realize eventually that you need his help... Hey jv.. We are origionally from Brooklyn (Park Slope)... now living in PA.... Like I said before.. I think I am the oldest of the group... I got polio in 1938 at age 18 months, when it was called "Infantile Paralesis"... I was just shy of the iron lung... but the good parts took over and left me with a pronounced limp..but raise a family we did and when our youngest turned 14 I started to feel the PPS effects... our youngest is now 39.. so it's been awhile...my advice to you all is to take it one day at a time and rest when you need to and try (it's hard) to have a good outlook...I can go on & on.. ... but I'll let you all digest what I have written...take care of yourselves.... Dolores (Dodie)
how are you doing today. I just realized that all of my problems for the past 15
years have probably been related to post-polio syndrome. I got it when i was
9 mos old in 1952. the doctors couldn't help me for another 9 months and then
the surgeries started every other year until i stopped growing at 16.
I've done well over the years - i used to be able to go out dancing until 2004.
my husband is very understanding, but he really doesn't understand if you know
what i mean.
i hope you are doing well
I live in Rhode Island. have a great day.
sincerely,
Linda
Last edited by moderator2; 07-22-2010 at 11:41 AM.
Reason: please do not post your email address
Hi linda, i am 51 and wore a brace on left leg and now i am using a scooter. Do you have a brace or just having weakness? Listen to me, just having weakness, it is all a big deal. Take care, teresa
Hi Linda, nice to meet you.... I understand what you are going thru, I guess we all do... you are so young... I guess you read about me so I won't go into detail... It is hard for your man to understand what you are going thru especially when you did well for so many years.... my husband refused to let me use a cane... he would always hold my hand (which I didn't mind) so I wouldn't lose my balance... I took him to a PPS Support group many years ago and he saw and understood for the first time what I was going thru...I've been on crutches now for the past 22 yrs and I use a scooter when I know there will be a lot of walking to do..cause (baby) I just cayn't do it (lol).... give your hubby time and he will understand...In the mean time take it one day at a time and rest if possible and most of all have a good outlook on life... that will help you thru all the bad times that you are having...Good Luck... ( if you can't get to a support group...have your hubby read some of the posts) One good thing the PPS didn't affect is my gift of gab... talk to you soon.. Dolores..(Dodie)
Hi Linda, (Islander 52
My name is Cher. I had polio in 1959 at 3years old. (I thought I was 4 but just found out I was 3) I also live in Rhode Island. I'd love to talk to you about it, but I tried to give you my email but the web master took it offline. I know sometimes you feel so much pain but I feel my husband doesn't want to hear about it everyday. We who have post polio are the only ones who really understand. My doctor does but I can't talk to him when I'm down. I have pain in my back, hips, legs all over and now feet. My family wants me to do all kinds of things for them, now that I'm not working. What they don't understand is that my body is not working either.
Good Luck to you
Cher
hi all.. it's been a long time..I hope this note finds you all well.. not so good for me.. it seems that every thing gave out all at once..so i'm basically confined to bed..and THEN to top it all off, i have carpel tunnal in both hands because of using the crutches for so many years...i cant feel anything ..so i'm pecking at this keyboard like a chicken pecking for corn..thank God for my hubby...he has been taking good care of me...but you know,I hate it.. i've been so independent for so many years,that it hurts to have someone do for me all the time..i never thought i could be so depressed..i have always been upbeat..no matter what.. i have been feeling helpless & useless and can't seem to get a grip on it.. i will be trying to get some help..but i think it's a loss cause..i feel as tho i'm totally giving up....MY INDEPENDANCE HAS BEEN TAKEN AWAY FROM ME (BEING ABLE TO DRIVE) I THINK I NEED SOME PEP TALKS..I know i'm old, but i'm still healthy and still have all my facalties.. dodie
The following 2 users give hugs of support to: Dodie3736 CherPPS (03-20-2011), rockymanone (03-19-2011)
Hey miz dodie, i will listen to you anytime. Giving up so much, everybody would be depressed. Oh, maybe to give you a laugh, my twitching has now moved into my right butt cheek, what can we do!!!
1
The following user gives a hug of support to rockymanone: Dodie3736 (03-21-2011)
Dolores, Rockymanone, Linda,
How are you all? Today is the day Spring begins and man am I ever ready. I live in New England and we have had a cold, snowy winter. The cold makes all my pain worse even with all my pain meds. (I take 22 meds a day) So I am looking forward to some warmer weather. Are you all OK? I haven't heard from anybody from this post polio board in a long time.
Love & Prayers
Cher
The Following User Says Thank You to CherPPS For This Useful Post: Dodie3736 (03-21-2011)
Hi Dodie,
I just read your note and I cried. I've typed to you before. I'm 55 but I've had PPS pain and problems for at least 25 years. Working has caused me to go way down hill fast so I stopped working, last year. I also have carpel tunnel in both hands. I had surgery in my right hand 2 years ago but the wrist and hand are still not right. My left hand so bad because I use my crutch on my left side to support my right side, which is the bad side. Now both are bad sides because I've over used the good side for so long. You are usully so upbeat that you have been an inspiration to me. I want to give you a BIG HHHUUUGGGGG. Try not to be depressed. I know what you're going thru and I know thats easier said than done. There has to be some reason why God made us have to live this way. I tried to join a support group so I could talk to others that understand but the one that was in my area was run by a woman who is now deceased. I called her and talked to her husband. Boy did I ever feel bad when he said "she died and I thought I told the polio people that". Poor guy!. So this is the only place I know to find folks who understand. I will pray for you and think of you often. Try not to be depressed your husband seems to love you so much and that's something not everybody, even well people, has. When you feel well enough to type let me know how you're doing.
Love & Prayers and a Big Hug,
Cher
thanks for the hugs, rockyman & cher...i remember those twitches well..and
they ain't that funny...but it's a part of the process...we all seem to go thru somthing different..i'm sorry that you are going thru so much pain,Cher...mine wasn't so much pain as aches & hurting and when they would stop, the weakness would set in...this time when the hurting stopped...every thing gave out..i still have some function (pecking on keyboard - i used to type 60 words a minute) sliding on & off my scooter.w/help...i can't even take a shower without help..oh well blah blah blah...thanks for listening to me..it helps to talk w/you guys who are having some of the same problems..i don't feel so alone...
with you all out there, i know my spirits will be lifted...
cher...you have given me the boost i needed to lift my spirits..you have been going thru it for a long time and you are so young...thank you for your encouraging words..i'm feeling so much better..i hope & pray that everything gets better for you..and believe me, i am so gratful for my great hubby..returning a GREAT BIG HUUUUUUGGGGG TO YOU. LOVE & PRAYERS BEING SENT TO YOU TOO...DODIE
/hi dodie and cher, do you have trouble swallowing? I get choked easily, and have to swallow often, feels like i have to clear mucus in throat and lungs. I have to clear my throat often and am hoarse. My arms hurt and have to use them for transfering and moving. Really have a lot of pain after putting weight on them. O.k., will quit complaing, will talk about my dogs. My 90 lbs, boxer named, buddy is laying up against me. My 9 lbs longhaired chihuahua, named chata, trys to eat him up as he is jumping up on the bed. He ignores her, so glad or all would be left of her, would be hair and teeth. Feel better and talk to you later. Teresa
Hi Dodie,
I am so glad that I made you feel better!!
I'm also glad to have someone who knows what I go thru.
Because I don't and can't complain every time I'm hurting, people think I'm not and ask me for help. My Mom is 85 and is in a lot less pain then I am, but she thinks I can drive her around and carry her bags. After a day with her it takes me 3 days to move again.
See now I'm complaining. Oh Well. I wanted to tell you I just bought a shower chair with a back and it has really helped me take a shower without help.
Stay in touch, if I can ever help you again it will be my pleasure!
(HUG)
Love & Prayers
Cher
Hi Teresa,
YES, I have a Lot of trouble swallowing. I went to a Speech Therapist who did a throat assessment throat and showed me what to do. I can only talk between swallowing, feet should be flat on the floor, avoid use of straws, small bites one at a time then swallow completely before another bite and be mindful of what and how you eat. It takes me a long time to eat and I still choke sometimes, but not as much as I used to. My PPS doctor told me PPS will not kill me but the choking could. This is all to do with PPS. It also causes me to stop breathing while I sleep so I had a sleep study. I have sleep apnea and have to sleep with a CPAP machine on my face. (very sexy, NOT)
So please be careful.
You have a huge dog, don't pick him up. To save the strength I have left in my arms I was told not to lift more then 10 pounds and not often.
I hope the info my doctors gave me will help you.
Good Luck, I will pray for you.
(Hug)
Cher
hi teresa yep i do have trouble w/swallowing..seems like everything gives out after awhile..like cher says slow down when you eat or drink..i even choke when i'm not eating..even when i talk too much...and clearng the throat is another problem and a general pain in the neck..i thought it was just a plain allergy so i took cough drops for it ..and they helped a bit BUUUUT i took the sugar free drops (i'm always on a diet) which are clearly labeled MAY HAVE A LAXITIVE EFFECT...needless to say, i stopped taking them.lol. i am so happy to have you & cher and all the rest of you there to vent to..i'm am starting to feel a little more like my old self again..no one quite understands what we are going thru..they feel empathy and sometimes pity..which i won't stand for..we are survivors and don't want pity..what we need is understanding and maybe a little helping hand once in awhile..MY LOVE & PRAYERS AND LOTS OF HUUUGGGS GO OUT TO EACH AND EVERY ONE OF YOU..DODIE
hi teresa yep i do have trouble w/swallowing..seems like everything gives out after awhile..like cher says slow down when you eat or drink..i even choke when i'm not eating..even when i talk too much...and clearng the throat is another problem and a general pain in the neck..i thought it was just a plain allergy so i took cough drops for it ..and they helped a bit BUUUUT i took the sugar free drops (i'm always on a diet) which are clearly labeled MAY HAVE A LAXITIVE EFFECT...needless to say, i stopped taking them.lol. i am so happy to have you & cher and all the rest of you there to vent to..i'm am starting to feel a little more like my old self again..no one quite understands what we are going thru..they feel empathy and sometimes pity..which i won't stand for..we are survivors and don't want pity..what we need is understanding and maybe a little helping hand once in awhile..MY LOVE & PRAYERS AND LOTS OF HUUUGGGS GO OUT TO EACH AND EVERY ONE OF YOU..DODIE
CHER IF YOU FEEL LIKE COMPLAINING..GO RIGHT AHEAD..WE'RE HEAR FOR YOU
hi all i'mmmm baaackkkkk... and still pecking the keyboard... it's been a long hard pull..and i'm slowly making a comeback..the problem that caused all of the other problems was a serverly pinched nerve in the upper portion of my back..caused by the use of the crutches.. i had lost amost all of the feeling in both of my arms and a portion of my legs...which left me weakened and unable to take care of myself. i had a "laminectomy" in may which took the pressure off of the nerve...and slowly my strength is coming back...if it wasn't for my post polio doc, i would still be unable to move.. she insisted that much numbness is not a part of pps..she sent me for an mri and they found the culprit...been going thru a lot of therapy and i can finally get up again (w/the help of my crutches of course)..my arms are still weak but are getting stronger.. the hands are still numb, but the surgeon said they will come back in time... i hope ..THEN TO TOP IT ALL OFF, I HAVE TO HAVE A D AND C..I THOUGHT AT 75 ALL OF THSE FEMALE PROBLEMS ARE OVER..COULD-A HAD ME FOOLED...
enough about me... how are you all doing.. i don't see anyone posting... i hope you are doing as well as could be expected..i think of you often and you are all in my prayers...
Last edited by Dodie3736; 09-13-2011 at 12:06 PM.
The following user gives a hug of support to Dodie3736: CherPPS (09-14-2011)
Hi dodie, i was afraid something had happened to you. I am so glad you are back. I am having trouble all over body. Trouble with my voice and swallowing. One of my biggest problem is my bladder. I take ditropan, and it helps, as long as i don't drink much. Got a news letter and it had an publication that dr. Bruno wrote. It was about a pps patient that went off ditropan, and started taking vesicare. She went into a coma. Vesicare slows down your stomach and intestines. She was given liquids and different medicines and finally came out of it. Unfortunately, she has to use the ventilator at night and sometimes through the day. That was such a scary story. Want to share with you, and anybody else that reads this. I am still keep on keeping on. Still have my dogs and they are my fur babies
Re: I'm new here... 
dodie
Re: I'm new here... 
cher...you have given me the boost i needed to lift my spirits..you have been going thru it for a long time and you are so young...thank you for your encouraging words..i'm feeling so much better..i hope & pray that everything gets better for you..and believe me, i am so gratful for my great hubby..returning a GREAT BIG HUUUUUUGGGGG TO YOU. LOVE & PRAYERS BEING SENT TO YOU 
TOO...DODIE
