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Old 10-02-2009, 07:37 AM   #1
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Meshell027 HB User
Question Oler CPer going crazy?

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

 
Old 10-08-2009, 11:13 PM   #2
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sac15105 HB User
Re: Oler CPer going crazy?

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

 
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Old 01-22-2010, 01:36 PM   #3
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gracie10 HB User
Re: Oler CPer going crazy?

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

Last edited by moderator2; 01-22-2010 at 01:44 PM. Reason: please do not post contact info for anyone.

 
Old 02-11-2010, 02:53 PM   #4
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Rainbowapple HB User
Re: Oler CPer going crazy?

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.

 
Old 02-17-2010, 03:47 PM   #5
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CPmomnga37 HB User
Re: Oler CPer going crazy?

Quote:
Originally Posted by Meshell027 View Post
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.
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Old 03-27-2010, 05:12 PM   #6
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KellyCz HB User
Re: Oler CPer going crazy?

Hi,
My name is Kelly, and I am 27 years old with mild right hemiplegic CP. The CP itself does not usually cause pain, no, but spasticity and problems that are secondary to CP sometimes do.

I was always able to move more independently than what I can now when I was younger. Then, I just looked awkward. I had to start wearing AFO's (ankle foot orthotics) when I was in my early 20's. Right now, I walk with a walker.

The best definition of CP I have seen describes it as a non-progressive, but NOT unchanging condition. Almost everyone I know that is older with CP has noticed it bothers them more as they get older. I would have to agree. You are not going crazy by any means, and you need to make your doctor listen to you.
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Old 04-02-2010, 11:16 PM   #7
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CindyM99 HB User
Re: Oler CPer going crazy?

Yeah I'm 37 and my CP is MUCH WORSE. Nobody actually talks about it because it's not supposed to be progressive but my last 3 yrs have been a nightmare. I went to regular highschool and did stairs 10 times a day, now I can't even climb stairs without a huge ordeal. I used to motor around on crutches, now I'm lucky to get a slow walk (most days I feel 90) I'm in Canada and all I can say is good luck getting help. I went to a rehab guy to try to line up therapy/a pool /activities I could do to keep some mobility. NOTHING is covered and I'm on disability. Once you turn 18 you aren't "cute" anymore and they don't want you in studies/find you help. I would probably be able to work 20 hrs a week, but it's not enough to get me off disability and our disability transit isn't reliable anyway. (You have to book a week in advance to even get a ride) so it's a catch 22. I couldn't finish college, because the wear and tear was catching up so no one will hire me anyway. This after I broke my back in highschool to get into a good college. Shorter lifespan? I certainly hope so. Sorry, but that's my reality, I have no desire to be 80 dealing with all of this. What was once very manageable has just gotten progressively worse add that to a total lack of support and you pretty much have me sitting in a subsidized apartment all day knowing my future is anything but bright. Hope you guys fair better

 
Old 04-04-2010, 03:09 PM   #8
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KellyCz HB User
Re: Oler CPer going crazy?

I hear you. It is the reality. I have many more problems myself than I used to. I have bladder issues that were never a problem when I was a kid, either. My bladder problems are being attributed to the CP. I have very little control of my bladder...always had very good control as a kid.

I broke my tailbone in 2007 after a fall down some stairs, and now live with a degree of pain everyday. I have also had increasing difficulty climbing stairs and just had to be "medically transferred" from an upstairs unit to a downstairs one. If you want to talk further, you can PM me.
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Old 04-04-2010, 10:23 PM   #9
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CindyM99 HB User
Re: Oler CPer going crazy?

I wonder about bladder too. I can't tell if my issue is bladder or if I just can't walk fast enough anymore and need to time things better. Who knows. I'm happy it's not just me, but honestly, what good does it do to beat a dead horse? It is what it is. I wish someone had been honest enough with me when I was 17 to say "enjoy it while it lasts." I had a BF then who was very accepting and could have had a few "normal" years. He's long gone now, and hasn't been anyone since (nor do I expect there to be since most days I can hardly deal with things--not to mention being stuck in said apartment)

I've tried to get my Mom to research CP so she at least understands WHY I can't do stuff like I used to, but all I get from her is "go to the doctor" because she's a huge believer in all that. I think I would feel better about things if I could just get a bit of understanding instead of being hassled for what I can't do anymore.

Oh well, not much to do about it.

 
Old 09-05-2010, 04:03 PM   #10
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Re: Oler CPer going crazy?

I think maybe you should fine a different Dr. my Dr. knew exactly what I needed and sent me to PT. Yes you do have pain from c/p and joints you do are least I have there is a web sight about aging with c/p see if you can find it. I am 53 years old also have worked all my life and have three very athleteic daughters. But you do have problems when you get older at least I do. I would file for ssdi and see what happens I did and won at reconsideration stage. Good Luck to you

 
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