Cerebral Palsy Support Group

I had the same thing, badly nough the drs thought i had MS. They were wrong, turns out it was a combination of the anti depressent I was on, and the toll of wear and tear on my body.

i've had decline as well, but after 3-4 years have adjusted with the help of physical therapy, meds, herbs, hydrotherapy and peer support.

docs said it was the wear and tear of being 'lopsided' from spastic hemi CP and being very active, even more than a lot of people without CP.

I never had any sign of decline until about 35 years of age. I am the Mom of two boys and had lived a normal life of college, working and marriage. I was living out my dream. With the job I had I was walking about 5 miles a night. My doctors had told me not to get "out of shape." Even when it hurt, I would push myself through the pain and continue. It backfired for me. I lost the ability to control my spasms and my muscles became very tight.

After many doctors and trying many medicines I have found one that allows me to function at a lower level that previously in my life but I am able to walk short distances and talk again and be a Mom. I feel like I am able to contribute to my families life. I take Zanaflex 6- 8 times a day and muscles relaxants. The doctor I am with now thinks I am about as good as I will get and the damage to my body is permanant. I miss thinking that my disease will never get worse. I feel that doctors are doing a disservice in telling people with CP that their condition will remain the same. If this was the truth, I still would be able to run and play with my children and be more fun. I use travel as a dancer all over the world and now I am excited to be able to walk through the whole grocery store in one visit. I am thankful though for healthy children and a wonderful husband.

I sure relate to your post, Ladydelaney. I'm in my 30's too and have experienced increased spasticity too. I try to stay as active as possible-- that is more of a challenge than it used to be. As for docs who say that CP will always stay the same-- well. clearly THEY have not had it. Medical text book answers and real life are two different things. Also, nikL, I read your input and was wondering which herbs you find helpful in dealing with your condition. Thanks!!

i use adaptogen herbs on rotation and with scheduled time off to help fight fatigue, plus coq10 (in oil). i also use heat therapy.

for spasticity and nerves (pain/emotion) i use skullcap, plus a little ashwagandha. other people use bach's flower remedy, valerian but those lower my seizure threshold. also norflex (which i must say has worn off its effectiveness after 6 months). i should use fish oil, but the good kind without heavy metals is mad expensive. that's supposed to help with pain too.

i still have to pace and rest but at least i can get through chores, errands, medical visits, home physical therapy and go on short walks easier than without them.

Hey you can all try Magnesium once before bed or when ever you encounter increassed spasticity. I use a brand put out by solray. Im real big into health and this is one recommended by a nutritionist. It helps alot with body ache as well!

I'm confined to a wheelchair and as I've gotten older my muscles have tighten up a lot and are a lot more spastic. I also have already had two superficial blood clots in my left arm. Now I have a DVT in my right and now taking warafin at present. I also take Celebrex for pain, which helps some...

I have been told many times that my daughters CP would never get worse - that whatever damage was done due to her Hydrocephalus bleeds at birth would be "all that we had to deal with" yet that has seemed many times over the years to be incorrect. At 14 her arches are now colapsed. She suffers a great deal with pain in the arches, calves, thighs and back. Her pain has DEFINITELY increased with age as had the problems with gait.