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:
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.
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:
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.