Question for the board

[Cairan]

I am a 30 year old guy who has had CP from birth (diagnosed as Spastic Diplegia). I have had numerous surgeries and had great success early in life. I started out having great difficulty walking and by about age 10 and 6 surgeries later, was walking with only a noticeable limp. I have stuck to a strong exercise regiment and have strong muscles in my legs. Here is my question. I have read all the research that says CP is non-progressive. I have also read that muscles tend to tighten with age, and I have expected that. However, I have been experiencing something different recently. My muscles in my legs can no longer support me, even though the doctors have told me they are well developed. I have been forced into a wheelchair and it has become very necessary. When I do not use it, I can only walk short distances (about 5 or 6 steps) before I fall due to a feeling of great weakness in my legs. I have always had balance problems, but the doctors have assured me their diagnosis is correct. Does anyone have any ideas why this is happening to me? I am dealing and coping well, but I would like some answers.

[JellyRJFan]

Welcome aboard! I don't have any answers, but I can say that I am experiencing similar things (I'm 20).

[insomnio]

I'm guessing you saw an Orthopedic surgeon right? Just a quick question, did you see one that mainly saw adults or one that specialized in children. In the city I'm in, I eventually had to go to a pediatric ortho for treatment. Even when i told him that I might need to have my surgery in Atlanta, he recommended going to another pediatric ortho. The reason is that most of us get treatment as kids, so they' have the most experiance with CP. I dont know your details, but that is something to keep in mind.

[mefrin]

I wonder if the medics are endeavouring to keep hope in you alive? I am throwing in a 'wild card' guess here and suggesting that you look closely to your diet (if that is possible). Try adopting the diabetic diet for a short spell but without vegetable oils in it; use instead the traditional saturated fats but more importantly, ramp-down those carbohydrates. It is possible that there could be an improvement to your condition but you will only discover this if you try the diet.

[jwh472]

Cairan,
I am 31 and have had a similar deterioration. (See page 2 of 'Does it truly not get worse? ' thread.) I cannot explain why it is happening but after doing some research I have come across several people with similar experiences. I have found that in the last year or two I have become more and more dependent on a wheelchair(something I never owned before) and need it to leave the house.

What is your general coordination like? How has that changed with time? Is your problem with walking just from muscle weakness or is it from problems controlling your limbs?

Best wishes,
JohnW