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Old 07-28-2009, 12:11 PM   #1
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Me1976 HB User
I'm an adult with CP

I'm an adult nearing his 33rd birthday. I was diagnosed with a mild case of CP at age 11. It effects my right side where the muscles are tight and ridged and never developed properly.

I received some therapy as a kid and for years the CP never bothered me. There were some things I could not do but for the most part I could do everything that I needed to do be independent. I am still independent today but I have noticed some changes as I am getting older.

The muscles in my right side don't seem to work as fluidly as they did when I was younger. I can still use my right side but I have to pay more attention to it where things used to come automatically. My right knee sometimes pops out of joint and sometimes I find myself walking into walls or losing my balance as if I'm drunk. Needless to say this is embarrassing in public.

On top of that I feel very tired all the time. My back hurts and I seem to be aging more quickly than normal. I have wrinkles, a lot of gray hair, my hands look "old" and in the winter my skin cracks and bleeds. Sometimes the tiredness effects my ability to concentrate on tasks as well. Is all of this normal and if so is there anything that can be done about it in order to continue on living independently?

 
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Old 07-28-2009, 01:25 PM   #2
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open_the_door HB User
Re: I'm an adult with CP

Quote:
Originally Posted by Me1976 View Post
I'm an adult nearing his 33rd birthday. I was diagnosed with a mild case of CP at age 11. It effects my right side where the muscles are tight and ridged and never developed properly.

I received some therapy as a kid and for years the CP never bothered me. There were some things I could not do but for the most part I could do everything that I needed to do be independent. I am still independent today but I have noticed some changes as I am getting older.

The muscles in my right side don't seem to work as fluidly as they did when I was younger. I can still use my right side but I have to pay more attention to it where things used to come automatically. My right knee sometimes pops out of joint and sometimes I find myself walking into walls or losing my balance as if I'm drunk. Needless to say this is embarrassing in public.

On top of that I feel very tired all the time. My back hurts and I seem to be aging more quickly than normal. I have wrinkles, a lot of gray hair, my hands look "old" and in the winter my skin cracks and bleeds. Sometimes the tiredness effects my ability to concentrate on tasks as well. Is all of this normal and if so is there anything that can be done about it in order to continue on living independently?
Welcome! My son is nearing 5 years of age, and he has CP diplegia. He is doing okay for his diagnosis, but still has a long ways to go(when I compare him to his twin). Right now we are having potty-training issues. I hope and pray that he will completely potty-trained by the time he goes to kindergarten otherwise he will be stuck in a special education program. I'm trying so hard to get him out of it. He is so intelligent, but he is still so delayed in his gross and fine motor skills.

 
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Old 07-28-2009, 07:22 PM   #3
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nwmom HB User
Re: I'm an adult with CP

Hi Me1976,
Sorry you are having trouble. Maybe you could be subclinicallly anemic or have some other condition that tires you out in addition to the CP issues. Hope not, but a blood test could rule other things out for you. Best of luck!
nwmom

 
Old 07-29-2009, 01:18 PM   #4
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Re: I'm an adult with CP

Hi Me,

I am 49 and have noticed over the past 13 years, a slow decline of my mobility and an increase in back pain. My left side is or was mildly effected and I had therapy as a kid as well.

I'm still very functional but I have just ordered my first wheelchair because I can't walk 2 blocks or stand for a great length of time. Now I have noticed that I stand on the ball of my left foot at times if I don't have my ortho shoes on. This is new as is an airway problem I now have. I have a thread here *Airway problem??* that explains how I found this out.

We put more demands on our bodies to do what takes less effort for an average person to do and it seems we pay at some point. I looked up CP and aging and it's recognised by the medical community that those with CP age earlier do to the extra physical stress put on our bodies to function day to day.

Dealing with the cold is the worst aspect of the changes that have happened to me. I'm still trying to wrap my head around the airway issue and find myself wondering what will go next??

I have had to adapt to work with the changes that have happened. Getting a wheelchair, having others do the haeavier house work and not being a hero when it comes to dealing with pain are things that have all helped.

Make life easier for yourself in anyway you can. As we change, we change how we do thing.

Take care

 
Old 07-30-2009, 07:41 AM   #5
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Re: I'm an adult with CP

You're lucky that you've been able to live independently so far! My hubby has spastic quadriplegia and can't get out of bed without someone to transfer him (usually me). We've noticed this summer that he has some "age spots" on his arms. I'm also worried I'm starting to see some gray hairs on his head even though he's just 29. He tends to require more sleep than I do, but that's understandable given that he has to deal with spasms during the day. Otherwise, he hasn't shown a lot of aging signs. I've heard that the body tends to wear out quicker for people with CP, but if it helps put things into perspective, I'm an elementary school teacher, and that tends to age people very quickly, too. I think it's not so much the CP as it is the stress on your body and/or mind. Many of my students' parents look older than I am, even if they're my age or younger (I'm 30). Maybe it wouldn't hurt to give your body more time to rest during the day just to help it relax?

 
Old 08-03-2009, 08:03 AM   #6
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Re: I'm an adult with CP

Quote:
Originally Posted by nwmom View Post
Hi Me1976,
Sorry you are having trouble. Maybe you could be subclinicallly anemic or have some other condition that tires you out in addition to the CP issues. Hope not, but a blood test could rule other things out for you. Best of luck!
nwmom

Yes, you really should see a doctor because it could be some other condition.

Winter weather makes people's skin dryer, so cracking and bleeding may stem from that.

 
Old 08-04-2009, 08:02 PM   #7
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rauljoni HB User
Unhappy Re: I'm an adult with CP

I am 40 years old. I have mild cp on my right side. The older I get the tighter my muscles get and the more tired I get. My muscle spasms are out of control. I have a baclofen pump that gives me a muscle relaxer all day long. I have worked my whole life and now thingsare getting harder for me. My right ankle is very deformed and I wear an AFO all the time. I also use a cane for balance most of the time. The worst came when I decided to try to go on Disability. I did not want to but I finally have to take care of myself first. The doctores have told me that my body is like a 60 year old and I have overused my body. I have been married for 20 years, and I have two children. It is getting harder and harder to take care of my housework, children and work.
Right now I was denied disability in May. They said because of my age, education and training, I am not severe enough. This is a bunvh of bull. I have worked my whole life. More or less, if I was mentally vchallenged, I would have a better chance of getting disability. I have had to hire a lawyer and appeal This is where I stand today. Love to talk to more..........til tomorrow...... Joni

 
Old 11-13-2009, 12:29 PM   #8
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BURAK HB User
Re: I'm an adult with CP

Hello Strawberry,

I read and learnt that you have CP with RA. As a person having a son (4.5 y.) with CP I would like to ask some questions.

Yesterday I was told by the pediatrician that my son with CP is likely to have JRA as well. My son is 4,5 y. Due to CP my son's motor activities are already slow. He falls a lot and injures himself. Also, for a couple of weeks he has had more difficulties in using his hands and walking because of the decrease in the range of motion. And yesterday I was told by our pediatrician that he is highly likely to have JRA, folowing swellings on his hands-fingers and pain which started 3 w. ago. The blood test are all negative. But the other symptoms all support polyarticular JRA . My son is already CP and now he has JRA which makes all more difficult for him and us. I feel very depressed and unlucky. It is a case one in a million. I will see a rhomoto. next week and I think he will decide the type of the diagnosis.

I'd like to ask you if JRA is a common disease at kids with CP. Do you know any organization for kids with both CP and JRA? Do you have any recomendations for us?

Regards

 
Old 02-20-2010, 06:03 PM   #9
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gracie10 HB User
Re: I'm an adult with CP

Hi Me,

Had some thoughts about your situation. First, when was the last time you saw a CP specialist or a PT?

If you have not been evaluated since you were a child, you may want to start by having a reassessment.

If you do not have a CP specialist available I would suggest asking a regular ortho. to use their knowledge to check for basic damage to your knee, particularly because this is a new complication. Also regular PT to strengthen the ligaments around you knee and rotator cuff is an excellent start just for your comfort, and to slow any future deterioration.

If you live in an area where you have access to a good gym with a pool, I would look into a membership. Some insurance policies even cover a portion of the price under their preventative care benefits. This is an easier way to subsidize the cost as oppose to trying to get them to see it as necessary CP care.

Anyway, most good gyms have simple items you may not hear about right off like balance boards which can be invaluable in giving you the posture and strength to minimize the "drunken" walking issues. Elipticals can also be quite good depending on your general stability as they offer different setting that strengthen specific muscle groups without stressing your joints. Definitely ask an ortho. particularly before they talk you into going for any surgical options for knee replacement etc.

Pools (particularly heated to at least 84) are a God-send for helping with muscle relaxation, control & flexibility. A hot tub even better for working on your arms range of motion and fluidity gently. You will find a freedom of movement in the water that is very hard for a CPer to duplicate on land.

Someone also recently suggested to me that regular 15-20 min gentle massages to the area in question can be very effective in increasing blood flow & thus function. Although, admittedly I have not tried this one yet and cannot speak to its effectiveness myself.

Hope this helps some.
Good Luck
gracie

 
Old 03-20-2010, 01:30 PM   #10
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Strawberry1 HB User
Re: I'm an adult with CP

Quote:
Originally Posted by BURAK View Post
Hello Strawberry,



I'd like to ask you if JRA is a common disease at kids with CP. Do you know any organization for kids with both CP and JRA? Do you have any recomendations for us?

Regards
Whoops, I don't come to this board that often...

I don't think JRA is common with children who have CP. Besides, I don't have JRA, I got RA in my mid-twenties. As I live in Finland, I don't know about any organizations.

As for recommendations, the thing that comes first to mind is that even if JRA is an uncurable disease, you should demand a treatment that makes your child symptom-free. If the so-called traditional medications (methotrexate, for example) do not work, you should ask for biological medications (Humira, Enbrel, Remicade etc.). They are really expensive, but really effective too.

Last edited by Strawberry1; 03-20-2010 at 01:41 PM.

 
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