I hope both yall have a great day. when I can I tell you how it went at the brace place. Antrara and Aviaja. I fell like I'm the grandma here I dont want to let yall see what the furture is in store for yall.(haha) Like a looking glass in the furture. (haha) but every case is different with different degrees of c/p But I really think I have it like you to do. And truth be told I might be younger than both of yall(haha) but I doubt it. Hey you guys would be happy to know I am getting me a dictionary so maybe no more spelling error's but the writting part is a different story . anyway yall have a great day and keep smiling . I miss talking to yall. Friends jgrangran. again have a great day .
Last edited by moderator2; 10-13-2010 at 11:31 AM.
I am a newbie here, have read this entire thread. I could have written any of the posts. I was told I had mild cp at about age 9. A slight limp with my right leg and stiff back on the right side were the only impediments I have. Got accused all my life of "limping" to get attention to the point of almost believing it to be true even though I knew it wasn't...... Became a Beautician which was my dream. Was told over and over that it was non-progressing, but after a few years of that, I knew I had to change professions, no energy at all by the end of day. I felt much older than others my age.
Got a "sitting type" job so I could be off my feet. Okay for about 10 years, then at age 50, starting falling repeatedly, sore/stiff right hip. Several years of PT, major flare ups with the pain in my back, finally forced to go on disability which totally devastated me. Felt so alone and knew nobody else with cp. From my research at the time, cp was still being described as non-progressive. However, during my current research, I discovered that there is now a term used to describe aging with cp called: post-impairment syndrome, after about 15 years of the medical community arriving at that conclusion. In the past, cp patients did not live as long as they do now, so not much attention paid to that group, focus was on children.
So, you see, we are really pioneers in this era of awareness of aging with cp. I am presently seeing a pain management dr. for injections in my spine as the pain is extremely bad in cold weather. Am on pain medicine different from what I had used in the past (began to affect my kidneys) which kept my pain in better control.
It is a journey we are all on and I am glad to see that attention is finally being given to this syndrome.
Take care
Last edited by discovery1; 12-29-2010 at 03:17 PM.
The following user gives a hug of support to discovery1: jgrangran (01-08-2011)
Thanks for your post I have been out of town and now I'm in town I really want to some how show my DR. your post but I don't think I can but I will surely tell him what you said. He sent me to a neurlist (very misspelled) Anyway I didn't think they could do anything it is what it is. But to my suprise she wants to do mri/mra of head neck thoraic spine and brain. She thinks its not cp related I do have c/p but she thinks my falling is something else. I have nerophay in my feet and she thinks that is something else. So my pcp thinks all my sytoms are related to c/p and my neuroligst thinks it something else. I have a wonderful pcp and the neurolist is wonderful I have been to pt and foot Dr. that wanted to do surgery but I personliy dont want to until I can no longer walk. The brace DR. turns out to be a c/p reacher at his old job and want to do a gait anlist before giving me braces. so thats where I'm at right now. on the 25th of this month I will get all those mri/mra so we will see. In my heart of hearts I think its all c/p related. but at least the neurolist doesn't blame everything on it. Its kind of scary but I really think its c/p related and then I have always been in denial of my c/p what if I don't have c/p after all and it was something else all along. My poor husband keeps telling me I have to quit being in denial all the time. HAHA He is such a nice Guy. I was warmed by your post and felt alot like you did. God Bless You I hope the other two I have been writting to is reading this post I really wasnt going to write until I had the result to all the medical things but I saw your post thanks for writting and may God Bless You Always
The following user gives a hug of support to jgrangran: discovery1 (01-08-2011)
Thanks for your post I have been out of town and now I'm in town I really want to some how show my DR. your post but I don't think I can but I will surely tell him what you said. He sent me to a neurlist (very misspelled) Anyway I didn't think they could do anything it is what it is. But to my suprise she wants to do mri/mra of head neck thoraic spine and brain. She thinks its not cp related I do have c/p but she thinks my falling is something else. I have nerophay in my feet and she thinks that is something else. So my pcp thinks all my sytoms are related to c/p and my neuroligst thinks it something else. I have a wonderful pcp and the neurolist is wonderful I have been to pt and foot Dr. that wanted to do surgery but I personliy dont want to until I can no longer walk. The brace DR. turns out to be a c/p reacher at his old job and want to do a gait anlist before giving me braces. so thats where I'm at right now. on the 25th of this month I will get all those mri/mra so we will see. In my heart of hearts I think its all c/p related. but at least the neurolist doesn't blame everything on it. Its kind of scary but I really think its c/p related and then I have always been in denial of my c/p what if I don't have c/p after all and it was something else all along. My poor husband keeps telling me I have to quit being in denial all the time. HAHA He is such a nice Guy. I was warmed by your post and felt alot like you did. God Bless You I hope the other two I have been writting to is reading this post I really wasnt going to write until I had the result to all the medical things but I saw your post thanks for writting and may God Bless You Always
Hi, glad I could give you some info. You might try copying my post then pasting it into a program like Notepad on your computer, print it and then you could take it with you.................I am doing better with PT and stretching exercises. I had to advise my therapist of research I had done and the results. She was glad to know there is now a diagnosis for the effects of cp. Her grandmother has polio and has weak legs, so she is familiar with effects of that. In my case, I sure wish it would just "go away" but not going to happen. Forcing myself to exercise 2 x day per pt program. I was also given an SI belt to wear to help keep that joint in the proper place. I do have a curve in my spine with some rotation. I now know that weather changes really flare it up. I will get the nerves "burned" on one side Tuesday and am not looking forward to that, but since I have improved considerably, I think the treatment is working. Sometimes it just takes a while to get the whole picture medically, so it should eventually fall into place for you. Thank you so much for your kind words, and let me know how it goes for you.
The following user gives a hug of support to discovery1: jgrangran (01-28-2011)
The Following User Says Thank You to discovery1 For This Useful Post: jgrangran (01-28-2011)
I will keep you in my prayers and will up date you on my progress when I get the results again thank-you and may you continue to have good days always.
Wow, I have been reading your posts and find myself crying tears of relief. I was diagnosed as a baby with CP and whilst I freaked out in high school when I looked it up in a dictionary and found 'spastic' in its place, I have been blessed to live a normal life to the point that I didn't think I had anything wrong with me. Occasionally people would be curious and ask questions and I will happily explain but I tended to just get on with things. I believe thing happen for a reason and we are given life's challenges to make us stronger.
I have a wonderful family and friends and now a loving husband. I have 2 young children who are just brilliant but lately I have felt out of control .... I am feeling overwhelmed with exhaustion, arthritis in my foot is terrible, my knees feel like they are on fire and my leg muscles as if i have run a marathon, and no amount of rest seems to help. I have been suffering from 3 slipped discs in my back since pregnancy and have constant pinched nerves and torn tendons for the past year from silly little accidents. I felt like I am falling apart and put it down to age - I am 42!
I have been trying to find answers online and the confidence to admit that for the first time in my life I am not coping. I guess since I was diagnosed as a baby I just did not think complications from CP will affect me this way - I have come across numerous articles online mentioning post-impairment syndrome and whilst it is a relief to know what is happening to me I still am at a loss where to get help.
Thankfully now I feel I am not alone .....
The following user gives a hug of support to janniejack: jgrangran (01-28-2011)
God Bless you Janniejack, Really I though I was super woman to juggling everything and it wasn't intil The Dr. actually got in my face that I knew I needed to take an active approach to this. I tend to take care of others before my self But let me tell you the things you are going thru is normal I'll hope you find a good Dr. to help you. I notice you live in sidney is that like Austria I know thats terriblely miss spelled . Please know people care and this board is a good place to come to. Please keep us posted on your progress also. My prayers are with you.
Thank you for your understanding. I was feeling so frustrated with tripping up and constant pain when previously nothing bothered me. Now I can even be standing still and then loose my balance!
I am from Australia but live now in Asia and finding anyone who understands here is very difficult. I hope to be able to see a doctor when I next go home but it is hard to find out who to talk to about it. Adult CP is just not so widely studied and information hard to come across.
The following user gives a hug of support to janniejack: jgrangran (01-29-2011)
Thats true you really need to find a DR. that understands that. You maybe could print articles about ageing with c/p maybe that would help your DR. Good Luck to you And God Bless You
I am a newbie here, have read this entire thread. I could have written any of the posts. I was told I had mild cp at about age 9. A slight limp with my right leg and stiff back on the right side were the only impediments I have. Got accused all my life of "limping" to get attention to the point of almost believing it to be true even though I knew it wasn't...... Became a Beautician which was my dream. Was told over and over that it was non-progressing, but after a few years of that, I knew I had to change professions, no energy at all by the end of day. I felt much older than others my age.
Got a "sitting type" job so I could be off my feet. Okay for about 10 years, then at age 50, starting falling repeatedly, sore/stiff right hip. Several years of PT, major flare ups with the pain in my back, finally forced to go on disability which totally devastated me. Felt so alone and knew nobody else with cp. From my research at the time, cp was still being described as non-progressive. However, during my current research, I discovered that there is now a term used to describe aging with cp called: post-impairment syndrome, after about 15 years of the medical community arriving at that conclusion. In the past, cp patients did not live as long as they do now, so not much attention paid to that group, focus was on children.
So, you see, we are really pioneers in this era of awareness of aging with cp. I am presently seeing a pain management dr. for injections in my spine as the pain is extremely bad in cold weather. Am on pain medicine different from what I had used in the past (began to affect my kidneys) which kept my pain in better control.
It is a journey we are all on and I am glad to see that attention is finally being given to this syndrome.
Take care
I almost cried when I read ur post! Its my story down to the Beautician thing! WOW! Im so glad to know Im not alone.
The following user gives a hug of support to Diva Powers: discovery1 (08-07-2011)
I'm a newbie too. I'm living in Ireland. I'm 40 and have mild cp which affects my left side, noticable limp and reduced power in my left arm. I've got one daughter who's 3 yrs old. I was diagnosed when I was almost 4. Everyone had told my mum that I was just lazy etc. I was a very large baby(nearly10lbs) and I was born blue with the cord around my neck. I had a lot of PT when I was a child, no surgeries. About 10 years ago, I started to feel more unsteady on my feet, v lightheaded. My dr thought it was stress related as my Dad had been diagnosed with cancer. It got worse and worse, eventually a locum realised there was something physically wrong and referred me to a ENT specialist. It turned out that I have menieres disease(build up of fluid in the inner ear canal). Now it took years for me to get that diagnosis and my confidence is shot to pieces. I can walk but not for long distances and need someone with me. I'm fine in my own home if that makes sense. As regards my childhood, I had a pretty good one in comparison to some others. I was bullied for being different but it stopped when we moved when I was 8. My only fear is that my daughter might get bullied because I'm different. Anyway, I just wanted to say hello and that it's nice to finally talk to others who understand what I'm going through. Hope that you're all well.
I am a 41 year old male(Mild CP) married with 3 young children, all under the age of 5. I have 15 month old identical twins and feel that within the last couple of years my health has deteriated I feel more and more fatigued and I too suffer from muscle spasms, lower back/neck pain. legs feel heavy as the day goes on.
I find it hard to walk around towards the end of the day. My wife doesnt really truely understand my condition and feels that 'I am not pulling my weight' nothing could be further from the truth.
In desperation in order to boost my energy levels I have recently signed up to Juice Plus.
not sure if this will help I would be interested to see if fellow CP suferers are using this nutricional product.
I wish you the best of luck.
Chet from London
Last edited by moderator2; 10-03-2011 at 12:06 PM.
Hope that you are well. I understand that feeling of having no energy. I really have to get myself into the frame of mind of exercising again. I used to have more energy but since having my daughter and getting menieres, I just can't seem to find the energy anymore. I'm taking a good multivitamin and energy boost(kelkin boost) drink in the morning and it seems to help a bit. It must be hard looking after twins, I was wrecked just looking after one! I guess that your wife is probably exhausted too and that's why she mightn't be as sympathetic as before. Have you talked to your gp, maybe they might be able to advise you on what to take to improve energy?
heyy i am a teen and i am currently studing for my GCSE's in May and i also have a part time and i am also a Dressage rider and aiming for 2016 paralympics. So i know what it's like to work hard and feel like i have the worlds weight on my shoulder' s but stay strong. Your husband is so lucky to have such a hard working wife and one day it will all pay off.
Good luck with your GCSE's and the dressage. I wish I had learned to ride, I think I'd be too nervous now. Hope to see you in the 2016 paralympics, did you get tickets for 2012?
I will get the nerves "burned" on one side Tuesday and am not looking forward to that, but since I have improved considerably, I think the treatment is working. Sometimes it just takes a while to get the whole picture medically, so it should eventually fall into place for you. Thank you so much for your kind words, and let me know how it goes for you.
