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Old 07-14-2013, 01:07 PM   #1
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Getting Older with Cerebral Palsy

My biggest concern is that there are no doctors who specialize in Adult CP in Tampa.
There is a lot of support for children, but once past 18 years old, guess you are in your own.
Does anyone know of any Adult specific doctors in Florida?

 
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Old 07-27-2013, 05:16 PM   #2
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Re: Getting Older with Cerebral Palsy

I don't live in Florida, but it is like that all over. My legs got worse ten years ago, and I went to see four different doctors, and none of them really helped me. The best help I got was when one out of the four told me to get a Wii and do the exercise programs with it. Other than that, they pretty much told me that I am on my own.

I do know how you feel - I also feel like the adults are being ignored. I don't know why that is... I wish things will change some time in the near future.

 
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Old 07-29-2013, 12:18 PM   #3
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Re: Getting Older with Cerebral Palsy

Getting Older with Cerebral Palsy is really and big *** headache. Has anyone who has Cerebral Palsy ever had anxiety really bad? I've had it bad kind of lately b/c I keep thinking something is going on with me like early ALS.

I was told though that it was not possible to develop ALS along with cerebral palsy. I just get tired of the twitching in my legs & feet and my arms always feels tight.

 
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Old 07-29-2013, 11:50 PM   #4
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Re: Getting Older with Cerebral Palsy

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Originally Posted by adultwithcp82 View Post
Getting Older with Cerebral Palsy is really and big *** headache. Has anyone who has Cerebral Palsy ever had anxiety really bad? I've had it bad kind of lately b/c I keep thinking something is going on with me like early ALS.

I was told though that it was not possible to develop ALS along with cerebral palsy. I just get tired of the twitching in my legs & feet and my arms always feels tight.
I went through a real bad anxiety disorder for several years during the time that my legs were getting worse. It was a complete mess.

 
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Old 07-30-2013, 07:19 AM   #5
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Re: Getting Older with Cerebral Palsy

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I went through a real bad anxiety disorder for several years during the time that my legs were getting worse. It was a complete mess.
Tell me about it. I know the other day it felt like my thigh muscle just tightened up on me out of nowhere and I could feel it as I could walk. Then sometimes I have tingling in my fingers (mostly on the right side) One day I'm just going to request an MRI b/c I have a lot going on like scoliosis as well. That's why I was worried about the ALS/CP theory. I should just get another surgery.

I spoke with a doctor on one of those sites (BBB approve) and asked about this and read material on both cases myself. Basically ALS/CP have some similar symptoms but one is progressive (ALS) and the other is non-progressive (Cerebral Palsy).

Basically they stem from damage of the upper & lower neurons in the brain. Cerebral Palsy is motor damage from either upper or lower but it isn't suppose to deteriorate as ALS does. ALS is deterioration of both upper & lower neurons in the brain. (I really feel for anybody diagnosed with this disease) but other factors would have to exist to rule out ALS.

 
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Old 07-30-2013, 09:29 PM   #6
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Re: Getting Older with Cerebral Palsy

Interesting. Thanks for sharing this.

 
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Old 08-26-2013, 09:54 AM   #7
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Re: Getting Older with Cerebral Palsy

This is a rebuttal to the response I made previously:

I swear man as people with cerebral palsy we need to have more doctors & facilities that specializes in adults with cerebral palsy. Over the weekend, I was on my health tap app on my phone. It's set up where there are a list of doctors you can ask about any health concerns or questions and it's free of charge.

So I was curious about cerebral palsy leading to other neurological diseases. I asked was it possible to have CP/MS I was told it was possible. Then I asked one doctor about CP/ALS existing at the same time I was told CP doesn't progress to ALS (maybe I asked the question wrong). CP is suppose to be "static" meaning the damage doesn't change over time & basically ALS progresses. I asked another question that if someone had cerebral palsy could that person be diagnosed with MS/ALS? This doctor told me yes.

As you see, I got 2 different responses to virtual the same question I wish there were more Dr's specialized in adults with CP to address any concerns each person might have about their individual concerns and symptoms.

I'm not doing this to scare anyone that has CP like myself but I was just concern so I can know what I'm looking forward to as an adult with cp like myself. I guess I'm a little worried b/c I had a muscle strain in my arm from lifting weights (repetitive curls) and my arm was sore from the wrist down but it felt like my skin was crawling as well after that and maybe my anxiety started to kick in as well b/c my back & head was hurting.

I don't say anything to my family b/c they just think I'm being a hypochondriac

Last edited by adultwithcp82; 08-26-2013 at 10:04 AM.

 
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Old 09-01-2013, 10:30 AM   #8
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Re: Getting Older with Cerebral Palsy

That is great that you got some information. It is just hard to get any kind of information from doctors. Nobody could give me any ideas what to expect or look forward to...at all. I figured I just have to accept what ever comes to me.

 
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Old 10-16-2013, 03:56 AM   #9
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Re: Getting Older with Cerebral Palsy

I have the same issue.I don't think any of the doctors take into consideration the CP. I have mild so basically I just walk different well at least I did but now it feels like CP is giving me other health problems.
I know I was told it doesn't get worse but now at 30 it feels like it has. It feels as if I am constantly pulling groin muscles, having a hard time bending over (today I dropped my pen on the floor at work and couldn't bend down all the way to get it), and I have even had problems sitting down in a chair because it feel like something was going to tear in my leg around my hips. The frequency for the stuff started only about a 2 years ago and went form happening like every 4 months to now monthly. The bottom of my spine hurts above my butt like I have a knot in it.
Plus my hand writing has gotten worse.

Last edited by cm270y; 10-16-2013 at 04:02 AM.

 
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Old 10-23-2013, 11:08 AM   #10
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Smile Re: Getting Older with Cerebral Palsy

Hi Folks,

I am new here. I have been in search of more CP forums, specifically to find info about Aging and CP - as you all know, our issues are all but ignored.

My name is Will, and I am almost 45yo. My childhood diagnosis is spastic diplegia, with my right leg being the main offender. I now suspect I have mild hemiplegia on the right side. I had hamstring surgery on both legs, and heelcord on right foot.

I feel like I hit a wall the day I turned 40yo. I started getting more severe spasms, dystonia, and tremors. The graft points on my surgeries now hurt like hell, and feel as hard as rocks. Things like losing some coordination in my right hand really began to make me worry, that I was coming down with something more serious like MS/ALS/Parkinsons etc. I started to get muscle sprains and pulls very easy, and keep developing tendonitis in certain areas. So by the comments here, I am not alone.

My life these days is about symptoms management, I never took meds before, but 90% of it I can knock down with Zanaflex and Valium. The other 10% just pain, and when I am off work MMJ hella helps with that.

I think we can all learn from each other here.

 
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Old 11-09-2013, 09:24 PM   #11
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Re: Getting Older with Cerebral Palsy

Will,

First off, welcome to this message board.

You are right - I think this is the only place we have to share and learn more about Adult CP. Thanks for sharing your story. Sometimes, I wish we had some actual support groups here where I live where we can share and learn more about these things.

 
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Old 12-03-2013, 02:13 PM   #12
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Re: Getting Older with Cerebral Palsy

Totally with you on that. I'm 26 and the same thing happened to me once I turned 18I felt that all the medical (I'm just gonna call it stuff--sorry) was now being denied. I appreciate everything that has come from doctors helping kids. I was there too --once. Anyway I live in Miami--so I wouldn't know anyone in the Tampa area. Just out of curiosity what kind of doctor were you seeing? New "symtoms' shall I say have been popping up since I turned 20ish. At the moment I'm attempting the Neurologist route.

 
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Old 12-05-2013, 04:19 AM   #13
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Re: Getting Older with Cerebral Palsy

So very true its like that all over,, Im from newzealand and I havent seen or heard anything from a specialist since my last operation at 12 now 21 and my legs have got a lot worse. There Just no support medically may I ask what did the doctor spose the wii would do that is a poor effort on there part.

 
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Old 12-27-2013, 08:09 PM   #14
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Re: Getting Older with Cerebral Palsy

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So very true its like that all over,, Im from newzealand and I havent seen or heard anything from a specialist since my last operation at 12 now 21 and my legs have got a lot worse. There Just no support medically may I ask what did the doctor spose the wii would do that is a poor effort on there part.
My doctors think that the Wii will slow my leg muscles from aging so fast.

 
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