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Old 04-01-2010, 09:08 AM   #46
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Join Date: Feb 2009
Location: Lancaster, Pa. USA
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Dodie3736 HB User
Re: I'm new here...

To all my friends on this board... I hope this finds you doing as well as possible... Remember to take it one day at a time.. and rest when you are tired... I want to wish you all a Blessed & Happy Easter... and remember...hopping is for the Easter Bunny....so don't overdo...Love & Hugs
Dolores (dodie)

 
Old 04-03-2010, 07:04 AM   #47
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Join Date: Oct 2009
Location: Providence, RI
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CherPPS HB User
Re: I'm new here...

Hi Dodie,
I am doing OK. I have been busy with doctors apointments to get my S S Disability approved. I had to get a lawyer, because of my job. So I'm seeing my primary doc, polio doc, diabetes doc, therapist, going to Physical Therapy and the TDI doc. I got the good news Thursday I'v been APPROVED!!!!!!!!!!!!!!! I'm so glad because when I need to take a nap I can so now I can take better care of myself. How have you been doing?

I want to wish you a HAPPY EASTER!
Love & Prayers
Cher

 
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Old 04-04-2010, 10:51 AM   #48
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Dodie3736 HB User
Re: I'm new here...

I am so happy for you, Cher... getting that dissability will make it much easier for you...resting is the key to feeling good.. now I don't mean be lazy, just take it a little slower...
I am okay... just the normal PPS stuff... I give thanks again and again for the great hubby I have who takes care of me... he even pampers me...Happy Easter..God Bless You and take care of yourself... Dodie...

 
Old 04-05-2010, 01:20 PM   #49
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CherPPS HB User
Re: I'm new here...

Quote:
Originally Posted by Dodie3736 View Post
I am so happy for you, Cher... getting that dissability will make it much easier for you...resting is the key to feeling good.. now I don't mean be lazy, just take it a little slower...
I am okay... just the normal PPS stuff... I give thanks again and again for the great hubby I have who takes care of me... he even pampers me...Happy Easter..God Bless You and take care of yourself... Dodie...

 
Old 04-05-2010, 01:25 PM   #50
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Join Date: Oct 2009
Location: Providence, RI
Posts: 37
CherPPS HB User
Re: I'm new here...

Thank you!
I do try to take it easy and when I over do I pay for it the next.
I'm sure I'l get used to being home and I'll make a schedule so I don't try to do too many things in one day.
Thanks for your caring!
love & prayers
Cher

 
Old 05-24-2010, 07:32 PM   #51
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cathy wilson HB User
Re: I'm new here...

Quote:
Originally Posted by CherPPS View Post
Hi Dodie,
I am doing OK. I have been busy with doctors apointments to get my S S Disability approved. I had to get a lawyer, because of my job. So I'm seeing my primary doc, polio doc, diabetes doc, therapist, going to Physical Therapy and the TDI doc. I got the good news Thursday I'v been APPROVED!!!!!!!!!!!!!!! I'm so glad because when I need to take a nap I can so now I can take better care of myself. How have you been doing?

I want to wish you a HAPPY EASTER!
Love & Prayers
Cher
How long did it take> My husband has post polio and will have to file soon.

 
Old 05-25-2010, 09:06 AM   #52
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Join Date: Oct 2009
Location: Providence, RI
Posts: 37
CherPPS HB User
Re: I'm new here...

Hello,
It only took 3 months, but I have a great doctor in Boston that specializes in PPS. People from all over the world go to him so I think thats how I got approved so fast. My team of doctors all told me not to be upset if I don't get approved the 1st try, but I did! His name is Dr. Darren Rosenberg and he works at the Spaulding Hospital in MA. His specialty is Post Polio Syndrome. I found him on line. He studied under Dr. Julie K. Silver who wrote the book " Post-Polio Syndrome a guide for polio survivors & their familes". That book is me to a tee. I hope I helped. Good luck to you and your husband. If I can help in any other why feel free to ask.
Cher

Last edited by moderator2; 05-25-2010 at 03:54 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 05-26-2010, 08:32 AM   #53
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Join Date: Feb 2009
Location: Lancaster, Pa. USA
Posts: 35
Dodie3736 HB User
Smile Re: I'm new here...

Quote:
Originally Posted by cathy wilson View Post
How long did it take> My husband has post polio and will have to file soon.
Hi Cathy.. It all depends... like Cher, it took a long time.. but if you read some other post... some people got it after a short period... look into it before your hubby retires...get as much info before hand and I think that will make it easier to get it.. good luck... Dolores (Dodie)

 
Old 06-02-2010, 08:45 AM   #54
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jv10021 HB User
Same boat

I too had polio at a very young age (1.5 yrs. old). I was highly functioning until 10 years ago when I started to develop weakness in my legs and advancement of what was minor (now major) scoliosis. What frustrates me is that there are no "live" support groups for all of us. Something like 50-70% of people who had polio have now developed PPS. I live in NYC and even here, the medical community, doesn't offer the resources it should (i.e. support groups through speciality orthopaedic hospitals, etc.). Getting PPS has come as a very unpleasant surprise. There's a part of me which feels like I'm getting polio all over again. I DID NOT anticipate spending this part of my life in such a physically limited capacity. Hate it!

 
Old 06-03-2010, 06:59 AM   #55
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Join Date: Dec 2009
Location: odessa texas usa
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sue5678 HB User
Re: Same boat

I know how you feel. My name is sue, i got polio at 2mths old. It is tough living with a disability, our whole lives, then going through it all over again. Hang in there, you will adjust. If you don't mind my asking, what part of your body became weakened, after your first onset of polio? My right leg stayed weak, i have walked with a limp my whole life. Now my left leg is starting to weaken too. I just do the best i can ... Good luck to you

 
Old 06-03-2010, 09:33 AM   #56
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Join Date: Oct 2009
Location: Providence, RI
Posts: 37
CherPPS HB User
Re: Same boat

Hi JV,
I feel the same as you. Like the rest of my life will be pills and PAIN...I had polio in my legs and my back. All I can do is exercise my arms and shoulders. I have to rest a Lot, but then I feel guilty that the house is a mess and I can't clean it. My husband understands but still feels that since I don't go to work anymore I should take over all the cooking, cleaning & laundry. My doctor says I should get a house cleaner but can't afford one right now. How is it fair that we have to live like this? I do pray for all my friends on this site. I wish you all as happy a life as you can have.
Cher

 
Old 06-04-2010, 06:46 AM   #57
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Join Date: Mar 2010
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gilboandco27 HB User
Re: Same boat

Quote:
Originally Posted by jv10021 View Post
I too had polio at a very young age (1.5 yrs. old). I was highly functioning until 10 years ago when I started to develop weakness in my legs and advancement of what was minor (now major) scoliosis. What frustrates me is that there are no "live" support groups for all of us. Something like 50-70% of people who had polio have now developed PPS. I live in NYC and even here, the medical community, doesn't offer the resources it should (i.e. support groups through speciality orthopaedic hospitals, etc.). Getting PPS has come as a very unpleasant surprise. There's a part of me which feels like I'm getting polio all over again. I DID NOT anticipate spending this part of my life in such a physically limited capacity. Hate it!
Hi JV10021, I live in England, Hertfordshire, and it's the same here also mate, not much help about at all. I don't think the governments will ever spend much on helping us as we maybe the last generation of people to suffer from it God willing. I've been trying some other med's like Co Q10, and Niacin out of desperation but as yet I've noticed no difference. I'm also taking Statins for cholesterol but I am highly suspicious of this drug, as many people say it can effect muscle strength in some people.
I'm 58 now and my symptoms started slowly about 12 years ago. I thought I was going mad and so did my GP/Doctor. God bless you and make the most of your life with what you have. Most of all don't be afraid to ask for help from people around you. Jim.

Last edited by gilboandco27; 06-04-2010 at 06:47 AM.

 
Old 06-04-2010, 07:18 AM   #58
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Join Date: Mar 2010
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gilboandco27 HB User
Re: Same boat

Quote:
Originally Posted by sue5678 View Post
I know how you feel. My name is sue, i got polio at 2mths old. It is tough living with a disability, our whole lives, then going through it all over again. Hang in there, you will adjust. If you don't mind my asking, what part of your body became weakened, after your first onset of polio? My right leg stayed weak, i have walked with a limp my whole life. Now my left leg is starting to weaken too. I just do the best i can ... Good luck to you
Hi Sue, Thanks for your reply mate, I'm the same as you Sue my right leg was the only problem when I was younger. It never really held me back at all apart from a slight limp. I was very successful in my work and businesses that I owned, like most polio victims they seem to do well at anything they do for some reason.
Then it started to hit me slowly. I noticed that I was getting really sleepy and week, Then my left leg started to give way under me and I had some bad falls. Now my arms are getting weaker too. What breaks my heart more than anything is when I can't help my wife with silly little things like carrying the shopping in from the car or when I can't go out to a function of some kind because I don't know If I will encounter stairs or high steps. I have to plan anything like that now before I commit to going anywhere. I can't believe my wife has stayed with me throughout all of this. I know I'm stupid but I don't like it when people have to help me, but I I've lost some of my pride now and have to give in sometimes. I wont give in to a wheelchair though while I can still get away with a walking stick or sometimes crutches. I thank God that I'm still standing. Anyway mate enough of all this doom and gloom. As you said Sue, we can all just do the best we can. Thanks again Sue and God bless you mate. Jim in the UK.

 
Old 06-04-2010, 07:42 AM   #59
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Join Date: Mar 2010
Location: WELWYN GAR
Posts: 5
gilboandco27 HB User
Re: Same boat

Quote:
Originally Posted by CherPPS View Post
Hi JV,
I feel the same as you. Like the rest of my life will be pills and PAIN...I had polio in my legs and my back. All I can do is exercise my arms and shoulders. I have to rest a Lot, but then I feel guilty that the house is a mess and I can't clean it. My husband understands but still feels that since I don't go to work anymore I should take over all the cooking, cleaning & laundry. My doctor says I should get a house cleaner but can't afford one right now. How is it fair that we have to live like this? I do pray for all my friends on this site. I wish you all as happy a life as you can have.
Cher
Hi Cher, I'm very lucky in the sense that my wife understands what I'm/we are going through especially as she has 'ME' herself, I don't mean 'me' as a person ha! If I had your husbands legs (assuming that they are good) I wouldn't let you do anything if you didn't want to do it. It's hard for people to understand sometimes because a lot of PPS'ers look perfectly OK most of the time, but they can't feel what we are going through inside mate. God If only I had a chance to do that for my wife I'd jump to it ha! Thanks for the reply mate, and I mean no disrespect to your husband at all Cher, I'm sure he is a very hard working man and takes good care of you. God bless. Jim in the UK.

 
Old 06-05-2010, 07:00 AM   #60
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Join Date: Jun 2010
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jv10021 HB User
Re: Same boat

So good to hear from some people in the same boat. It's unbelievable that I live in Manhattan and can't find the emotional support groups that deal with PPS. I've even started looking for groups for "middle aged" people with chronic physical disabilities. Still a challenge. I like replying to posts, but really want to be in a room face to face with people. Anyway, I stay as active as I can, ***** and moan appropriately (being a New Yorker, this comes naturally) and take solace in the face that I'm not alone, even if my fellow sufferers are a distance away.

 
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