Oler CPer going crazy? - Cerebral Palsy Message Board

Meshell027 · 10-02-2009, 08:37 AM

Hi,

I was diagnosed with CP athe age of 3. Throughout life I have been highly functional including sustaining a job since I was 14. Suddenly now at the age of 30 I am experiencing pain and more muscle tension. My doctor says that CP doesn't usually cause pain. It makes me second guess what I am truely feeling. Is his statement true? Am I loosing my mind?

Have any of you had any luck getting approved for disability after you have worked for a while? I do have a lawyer but I want to be realistic about my chances.

Thanks,
Michelle

sac15105 · 10-09-2009, 12:13 AM

I am in my mid 30's and my CP symptoms are getting worse. I have an increase in muscle spasms, joint paint, and I am falling more frequently. Been doing some research on the web and i am afraid to say that CP and getting older do not mix well.

Have also read that some doctors are not very knowledgable about CP & aging..I am seeing a doctor who is a Physical Medicine and Rehabilitation (PM&R) specialist, who has been helpful. However, not happy about the increased fatique from the drugs that help calm the spasm:-(

This site below has been somewhat helpful. I cannot get the password so I can read further of the articles which are copywrited but there are some links to informative stuff.
http://www.cerebral-palsy.net/index.html

gracie10 · 01-22-2010, 02:36 PM

Michelle,

I'm not sure where in MA you are from but my family & I lived there up until a few months ago and are already planning a move back as medical services of any kind are even harder to find in other areas of the country.

I have not needed to use any services up to now but have heard from others that the following place is a good jumping off point for finding referrals etc.

United Cerebral Palsy of MetroBoston, Inc.
Watertown, MA 02172

Hope this is of some help.

gracie

Rainbowapple · 02-11-2010, 03:53 PM

Michelle,

I have lived with Cerebral Palsy for my entire life-I'm 37. As you likely know, Cerebral Palsy in of itself is non-progressive. However, some of the secondary characteristics of Cerebral Palsy (such as muscle tension) can cause ongoing difficulties. From that point of view, it can be important to have a long term medical care plan, that is subject to regular review, and specialist referrals as and when needed. This can also be helpful if you are planning on filing for Disability, as you will need documentation and evaluation of your condition, inability to work, etc.

No, you are not going crazy and you are not imagining it. In my personal experience, while there is a lot of emphasis placed on resources for children with Cerebral Palsy, there are fewer 'dedicated' links and support systems out there for adults who are living (mostly) functional and independent lives with Cerebral Palsy. To an extent, we are 'invisible'. That isn't to say that we don't need help and support. We do.

I wish you all of the very best.

CPmomnga37 · 02-17-2010, 04:47 PM

Quote:

Originally Posted by Meshell027

Hi,

I was diagnosed with CP athe age of 3. Throughout life I have been highly functional including sustaining a job since I was 14. Suddenly now at the age of 30 I am experiencing pain and more muscle tension. My doctor says that CP doesn't usually cause pain. It makes me second guess what I am truely feeling. Is his statement true? Am I loosing my mind?

Have any of you had any luck getting approved for disability after you have worked for a while? I do have a lawyer but I want to be realistic about my chances.

Thanks,
Michelle

Hi Michelle,

I just joined today. Could you tell me where your pain is? The reason I ask is because I have severe pain in my lower back which is caused by arthritis due to the CP. I to was diagnosed at around 2, a young age. I'm now 37, and for the most part i've been doing good, but I was put on disability about 6 yrs ago after working, because of the CP, so it can happen for you to. I NEVER knew the spasticity & joint contractures could get worse with age, until 3 weeks ago, and it got pretty bad. I hope I have helped in some way.