It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cerebral Palsy Message Board

  • I'm an adult with CP

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 07-28-2009, 11:11 AM   #1
    Me1976
    Newbie
    (male)
     
    Me1976's Avatar
     
    Join Date: Jul 2009
    Posts: 1
    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?

     
    Sponsors Lightbulb
       
    Old 07-28-2009, 12:25 PM   #2
    open_the_door
    Member
    (female)
     
    Join Date: Sep 2007
    Location: U.S.A.
    Posts: 95
    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.

     
    Old 07-28-2009, 06:22 PM   #3
    nwmom
    Senior Member
    (female)
     
    Join Date: Oct 2006
    Location: Winston-Salem
    Posts: 174
    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, 12:18 PM   #4
    Lost&Found
    Junior Member
    (female)
     
    Lost&Found's Avatar
     
    Join Date: Aug 2005
    Posts: 19
    Lost&Found HB User
    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, 06:41 AM   #5
    WMCR2001
    Junior Member
    (female)
     
    WMCR2001's Avatar
     
    Join Date: Jun 2005
    Posts: 41
    WMCR2001 HB User
    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, 07:03 AM   #6
    Strawberry1
    Senior Member
    (female)
     
    Strawberry1's Avatar
     
    Join Date: Dec 2003
    Location: Finland, Europe
    Posts: 220
    Strawberry1 HB User
    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, 07:02 PM   #7
    rauljoni
    Junior Member
    (female)
     
    rauljoni's Avatar
     
    Join Date: Mar 2009
    Location: Cedar Rapids, Iowa
    Posts: 12
    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, 11:29 AM   #8
    BURAK
    Newbie
    (male)
     
    BURAK's Avatar
     
    Join Date: Jan 2009
    Posts: 4
    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, 05:03 PM   #9
    gracie10
    Junior Member
    (female)
     
    gracie10's Avatar
     
    Join Date: Jan 2010
    Location: Massachusetts
    Posts: 21
    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, 12:30 PM   #10
    Strawberry1
    Senior Member
    (female)
     
    Strawberry1's Avatar
     
    Join Date: Dec 2003
    Location: Finland, Europe
    Posts: 220
    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 12:41 PM.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    "Disabled Adult Child's Benefits"? Steven45 Disabilities 14 10-06-2009 05:43 PM
    adult acne - a real problem bellagi Acne 18 03-14-2008 08:31 AM
    Disabled adult child benefits roses4lace Disabilities 18 01-12-2008 04:59 PM
    Adult Tonsillectomy Saraw08 Ear, Nose & Throat 4 12-21-2007 05:20 PM
    LisaMP's Guide to Adult Tonsillectomy mkgb Ear, Nose & Throat 0 09-07-2006 01:16 PM
    Adult Tonsillectomy - Guide for Friends and Family LisaMP Ear, Nose & Throat 165 08-31-2006 09:40 PM
    Adult Diapers question Paine Aging Issues 24 12-27-2005 01:03 PM
    Adult Acne Buzzsaw Acne 73 08-16-2005 09:50 AM
    Is this true of adult acne? Andrew29 Acne 6 06-22-2005 11:09 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 07:03 PM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!