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Old 10-30-2008, 06:46 PM   #1
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reddawn32 HB User
husband has cp, looking for info...

i've been married for 1 year to a man who has cp. i am trying to learn as much as i can about cp. i'm hoping somone on here can help.

my husband has spasticity (sp?) in his right arm. 20 years ago he had surgery on his arm to release (?) the tendons so that his hand would be more relaxed. it is still drawn, but he can use it a bit. he is experiencing a lot of pain in his upper arm and shoulder. his physician (not a cp specialist) keeps prescribing drugs. (pain killers and muscles relaxants). he tried baclofen for the spasticity, but it did not help.

what kind of doctor should we be seeing?

how can we find a cp specialist in our area (cincinnati)?

would botox be worth looking into? and if so, who do we go to for that?

is there sometime else we should be doing?

thanks in advance for your help.

 
Old 11-01-2008, 07:37 AM   #2
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Re: husband has cp, looking for info...

Hello,

CP is caused by brain damage before or around the time of birth. Spasticity is a result of the brain being unable to stop messages from getting to the muscles...so the tone/tightness in the muscles is increased because they are basically having little contractions all the time. Often, after things get to a certain point, doctors will cut/release the muscles to stretch them, like your husband had, but they cannot make it perfectly "normal."

A lot of the focus by doctors is only on children with CP, and they kind of forget about us as we become adults; I guess because CP is not considered progressive so they figure they've "done all they can do." However, as many people on here can tell you, the symptoms often actually get worse as we become adults due to wear-and-tear on our bodies that is different than what was supposed to happen.

So, your husband's shoulder pain may be due to muscle tone/tightness, like your doctor is assuming. It could also be that he has a bit of arthritis in his shoulder from the bones being held in a different position by the tight muscles for so long.

As far as Botox, that blocks the muscle receptors for a time so that the excess messages can't get through and the muscles relax. That is often very effective with CP. I had it administered recently by a physiatrist/physical medicine doctor (although he was recommended by my childhood neurologist who was an expert in CP; all physiatrists may not know as much about CP). I've also had it in the past by an orthopedic surgeon; again, some are better than others in terms of CP knowledge. Especially considering the shoulder problems, you may want to try to find a pediatric orthopedic surgeon to see (as I said, doctors mostly focus on kids with CP, so they generally would know the most).

Children's Hospital of Pittsburgh has a spasticity clinic where all of these doctors examined me every 5 years and collaborated on what to do next. You cannot attend that after you're 18, but maybe if worst comes to worst you could call there and see if they know of any specialists in your area. Or contact your local United Cerebral Palsy. Or go to different doctors within your insurance until you find a good one .

Hope that helped; good luck!

 
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Old 11-01-2008, 03:54 PM   #3
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Re: husband has cp, looking for info...

THANK YOU Steffers!!! That does indeed help. And that is exactly what we've been experiencing - everything is directed at children and not towards adults with CP.

I think his upper arm/shoulder problems are also associated with the way that he holds his arm. He is so embarassed by the uncontrolled movements of his arm that he tucks it under his other arm - thus pulling on the shoulder. I hadn't thought about arthiritis, but that could very well be. He's 49, and has not been seeing any kind of specialist since he was a child, which is why I am trying to figure out just who we should be seeing.

Thank you for your ideas and insight. I very much appreciate it.

 
Old 11-02-2008, 10:02 AM   #4
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rhales199 HB User
Re: husband has cp, looking for info...

Quote:
Originally Posted by reddawn32 View Post
THANK YOU Steffers!!! That does indeed help. And that is exactly what we've been experiencing - everything is directed at children and not towards adults with CP.

I think his upper arm/shoulder problems are also associated with the way that he holds his arm. He is so embarassed by the uncontrolled movements of his arm that he tucks it under his other arm - thus pulling on the shoulder. I hadn't thought about arthiritis, but that could very well be. He's 49, and has not been seeing any kind of specialist since he was a child, which is why I am trying to figure out just who we should be seeing.

Thank you for your ideas and insight. I very much appreciate it.
just stopping in quickly with a question/ comment. Based on your description of how he holds his arm, I wonder if he doesn't have tendonitis. I'm no dr, but have dealt with tendonitis myself. Tendonitis is when the tendons that connect our bones/ muscles at the joints get tight & inflammed. Has he tried ibuprofen (an anti-inflammatory) or ice? Those may help...

 
Old 03-20-2009, 06:51 PM   #5
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Re: husband has cp, looking for info...

He should be seeing a neuologist. He will do the botox injections. Box did a lot for me but remeber it is only temporary. Ask the neurologist to take an xray of the upper arm/shoulder. I this does not show anything, ask for an MRI. I had a lot of pain, spasms and stiffness. He found out that I had tendonosis in the shoulder. It is just like tendonitis in the ankle but it is in the shoulder. The MRI will show you the problem. The only thing to really do is have the doctor order physical therapy. You have to be patient--- it takes a while to heal. Physical therapy is the best thing for him. Lets keep in contact.

 
Old 04-11-2009, 05:59 PM   #6
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shelbybear HB User
Smile Re: husband has cp, looking for info...

[QUOTE=reddawn32;3778124]i've been married for 1 year to a man who has cp. i am trying to learn as much as i can about cp. i'm hoping somone on here can help.


what kind of doctor should we be seeing?

how can we find a cp specialist in our area (cincinnati)?

Hello:
I have done some research on the internet and I ask the family doctor we have seen for years...My husband has CP only on his right side...he holds his arm the same way...we have just learned to cope with it. We have been married for over 20 years...he now has CHF and a partial collaspsed lung which aggravates his CP...but we keep on going....if you need some support its okay to email me...later shelbybear.

 
Old 04-12-2009, 04:58 PM   #7
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rauljoni HB User
Re: husband has cp, looking for info...

The older I get, the stiffer I have gotten. I have an implanted baclofen pump which gives me a muscle relaxer all day long. CP is not really suppose to get worse but it is the overuse of the body. I have worked all my life and its now time to take care of myself. I have filed for disability but I am going to work part time. I realized that I have to slow down.............

 
Old 07-30-2009, 06:45 AM   #8
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WMCR2001 HB User
Re: husband has cp, looking for info...

I don't know much about arms, but I was excited to see your post. I, too, am married to a wonderful man with CP, and I'm comforted in knowing I'm not the only one out there.

 
Old 07-31-2009, 06:53 PM   #9
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rauljoni HB User
Re: husband has cp, looking for info...

How old are you and your husband? The best thing to study is 'aging with cerebral palsy'. Cerebral palsy is not suppose to get worse. Your husband's body will age faster. I am 40 years old but the doctors told me that my body is 60 years old. I am tired constantly and my muscle spasms are worse.

 
Old 08-01-2009, 06:41 AM   #10
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WMCR2001 HB User
Re: husband has cp, looking for info...

Don't know if you meant me or the original poster, but here's us for comparison....

Patrick has a few sunspots on his arms from the sunlight this summer (unlike the last two summers)--it comes with his tan. But he doesn't appear to be aging any quicker, otherwise. He's 29, I'm 30. He tends to tire out faster than I do, but I think it's because I'm very energetic and a morning person (he's a night owl). We have known each other for five years and have been married for two.


Christina

 
Old 08-03-2009, 06:14 PM   #11
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reddawn32 HB User
Re: husband has cp, looking for info...

no, you're not the only one!!! the hardest thing for me is knowing when to help, and when to keep silent and let him do for himself. on the one hand i want to make his life easier - i want to be his "help mate". on the other hand, i don't want to make him feel "less than" by doing things for him. i am constantly screwing up - and forgetting what he simply cannot do. we've been married less than 2 years, and i know i still have a lot to learn.

 
Old 08-03-2009, 06:19 PM   #12
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Re: husband has cp, looking for info...

Quote:
Originally Posted by rauljoni View Post
How old are you and your husband? The best thing to study is 'aging with cerebral palsy'. Cerebral palsy is not suppose to get worse. Your husband's body will age faster. I am 40 years old but the doctors told me that my body is 60 years old. I am tired constantly and my muscle spasms are worse.
my husband is 49, he will be 50 at the end of this month. i am 43. we were married less than 2 years ago, so i am still learning about CP, and about him specifically. other than his shoulder problems (which seem to come and go), he doesn't complain of any other pain or discomfort. we are in the process of building a new house, and we are making it as accessible as we can. the idea being that it will be an appropriate place for us to live for a long, long time.

 
Old 08-04-2009, 07:16 PM   #13
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Talking Re: husband has cp, looking for info...

My husband does a lot of little thins for me. We have been married for 20 years and I am 40. I would not be able to do things without him. Doctors have told me that my body is like a 60 year old. I am getting slower and things are getting harder for me to do or taking longer. Oh, I have two children which did a toll on my body durng labor. Taking care of the family and everyday stuff is getting harder. I am starting to take care of myself first. Lets talk some more............

 
Old 08-04-2009, 07:27 PM   #14
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rauljoni HB User
Re: husband has cp, looking for info...

People with cp age faster. I am always tired because of meds, daily mental stress and daly overuse of my body. I would not be able to function without my meds. I need my muscle relaxer and pain pills. Lets talk some more........Joni

 
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