I'm 34 and have mild right spastic cp. The only thing I can possibly think of is that the cp is taking it's toll on your body. Keep in mind, I haven't seen a doctor in years and I'm the only person I know with cp, so I'm just going by my own experiences and what I've noticed with me and my own body. I've noticed that my body has been getting worse over the past 5 years or so. My muscles seem to spasm more often with greater intensity, and it takes less to trigger the spasms too. My joints are damaged which causes the pain and spasms sometimes and also causes them to not work as well, or respond as well, as they use to. My toes and fingers seem to stick as well (i.e. refuses to move when I try to will them to move, and sometimes they don't even feel like they are there at times). Over the past couple of years, I've noticed that they also look like they're bending off to the side, possibly due to arthritis is my guess. Most of my muscles also refuse to activate as fast as they used to after resting for any length of time too.
I'm not completely sure why all this is happenning, I don't remember it being quite this bad when I was younger, but my guess is the cp has damaged and redamaged my muscles, joints, ligaments and tendons so many times over the years, that my body is just less able to cope with it all now. It just doesn't seem to bounce back as fast as it used to. I'm guessing that's what you might be experiencing. I've been reading articles and blogs in bits and pieces online about cp and aging (on the rare occassions I can find them), and it seems that our bodies tend to breakdown a bit faster than the bodies of able-bodied people. After a while, we start to lose our laxicity in our muscles because of normal aging, plus the extra damage we deal with due to the spasms. Sounds wierd, I know, but the more I thought about it, the more it made sense. So I guess it's possible that is what is happening to you. But I don't know, I could be wrong.
I wrote a post about my 7 year old son who has cp and was wondering if you would read it and tell me if this sounds like somethings you went through at his age. If so what do you think will help me to better approach him and his therapist when he starts talking with one. I have never met anyone with cp as an adult so I am glad to be able to talk with someone who has been there. I need a better understanding of cp and what to exspect with my son. also mamiJ if you would give me some imput as well.
I am 33 years old with mild CP. I have noticed similar to eagle 51 that my CP has become worse over the last 5 yrs. I walk much more on my toes and my balance has become a lot worse. I am debating having achilles tendon lengthening surgery and mid-foot fusion to help me out. My fingers and toes aren't sticking togeher yet.
My son had CP...spastic-athetoid quad. So he never walked. However...he had an intrathecal baclofen pumped placed in 2001 with AMAZING success!
He was non-verbal, so I could only judge what I saw. Since his tone was so high, it was never easy to hold him, he was unable to sit, etc. After the pump, I could hold him without a struggle...I would sit him on the side of his bed and his feet DANGLED!!!!!
With that in mind, I suggest a visit to a spasticity clinic and an ITB trial. The trial is pretty simple...they release baclofen into the intrathecal space. Totally reversible (as is the actual implantation).
I have mild Spastic Cerebral Palsy diplegia, meaning that it is in both of my legs more than in my arms. I am fifty years old now and soon to be 51,and yes I have noticed many health complications too that are really affecting my life. The latest is not being able to hold a baking pan for more than a second without it falling. I have also had probelms with conspitation and dirreahra as if my body can not make up its mind as to what it wants to do or not do. I still reflux from time to time but it is not as bad as it was in my childhood. My weight is a constant problem since it goes up and down, and I have probelms with leg cramps. My fingers and toes are not sticking together as of yet, but I have had problems controlling my fingers on the keyboard.
I have a friend with CP,but I never knew it in high school.She seems to have problems walking now as she is now in her 50's. Why
I am a soon to be 50yr old wiht mild CP. I too have noticed changes in my overall health. I have noticed more muscle tightness and spasms in my neck and shoulders. At 38 I had a two level cervical fusion from a car accident that has certainly accelerated many of the aches and pains. I have found it more difficult doing everyday activities.
I have a great job and live a fairly normal life and learning how to adapt as I get older I feel is the key.
I am thankful to have found this forum as I think we can all benifit form eachother.
We have a family friend, 36 with cp.He has been getting progressively worse the past couple years - has been seen by Mayo with so far little to no progress. He is in constant pain with headaches, lower backaches and can't even remember conversations. He suffers with eating disorders and has lost a lot of weight. No one seems to be able to get the pain under control. He still lives independently but has been approved for a caregiver. I am not sure if he should be in a home care environment or how to help him with his pain. Any ideas. He is currently in the hospital and being checked out by a neurologist at barrow's so we hope for thebest.
I'm 35 and I have mild spastic CP (left side). I've noticed a couple of the things you talked about in me. First of all, sorry about the pain you're in...That has to be frustrating at times. I notice that sometimes my toes and fingers "stick" or "lock" if you will. At fifteen I had the surgery you mentioned in your post (left side). For me, it certainly helped & people noticed it. (improvement). But I've noticed that as I've gotten a bit older, I have to make more of a conscious effort to get that heel on the floor, because the muscles have gotten a bit lazy. I've begun (again) doing stretching exercises that were suggested to me by my doctor back when I had the surgery to sort of " train" that tendon to stretch (gently) and the heel to stay on the floor (better). I'm no doctor, of course, but I think, that for anyone, as they get a little older, the muscles are not as toned, they become weaker (in general) and they don't bounce back like they do when we're kids and we're still growing & we have plenty of rushing hormones. Add to this the stiffness and spasticity of CP...and well, we have some challenges don't we? I know, for me, I have to make more of a conscious effort to stretch and move around. This really bites when most physical exercise is painful, because CP muscles are resistant to it. (Ouch!). Just do what you can. For me, I try to get up and walk around periodically throughout the day (it could be around the living room or down the hall). This simply reminds my brain to move the muscles. I find this makes a difference for me. I also periodically flex my toes throughout the day. Sometimes I can't because... They're stuck. So I take my foot and separate the toes and then flex them. Sometimes I rub them a little, this seems to lessen the stiffness. Sometimes I'll stand up and walk and purposely put that heel on the floor, slowly, each step. (If this is painful, I'd talk to a doctor or a PT first). But generally, living with CP I can tell the good "ache" of needing to be stretched :). Sometimes it's hard for me to tell whether things are "locked" up because I have not moved enough, or because I've done too much, & muscles are over worked. Anyway, hope that helps :)
I am 40 and was diagnosed a week ago with mild C.P. I had the braces on my legs growing up and other problems but was never diagnosed. I am seeing a neurologist, who is very nice and listens. I looked mild c.p. up and it was as if they wrote a text book on me as a child. I am having alot of things going on now: memory loss of words, weakness on my right side in extremities, trouble holding things, muscle spasms, constipation, weight loss, balance issues when walking, double vision and on and on. I have R.A. also and get monthly infusions and that helps. My knees are getting VERY painful and I get cortisone and sinvisc injections butt they aren't helping like before. I am a very active person but don't have the energy like I used to and it's making me mad.
Happy to find this blog and know I am not alone.
I too was "diagnosed" by a couple of specialists just recently. I'm 40. I quote diagnosed, because it wasn't anything official but just a "yeah, that's probably what it was, but it's hard to know 100%." I have a smaller left leg, significantly smaller left foot and little flexibility. Muscle tone is significantly less than the right. But I didn't have spasticity but I can relate to some of the comments above to some extent. I've never had much grip strength, balance is poor, and I grew up thinking that toes didn't flex. I can move them, but only a little. So the last month has been incredibly eye-opening for me, filled with a variety of emotions (after seeing 4 specialists in the last few months). I'm grateful that I am able to do what I can. And I'm starting to get some insight into what is possibly causing the issues I'm having. But I'm very active, and I'm noticing in the last 2 years a significant increase in injuries and decrease in performance. I get spasms in my back frequently despite activity. I've seen a decline in performance of my left leg, despite a gastroc lengthening surgery (and surgery to cut and pull my foot bone out - to straighten it).
I'm considering botox which is supposed to increase flexibility and mobility. I've had PF in both of my feet ever since the above surgery (5 years now). I just had a plantar platelet injection procedure on one foot to see if that helps (crossing finger). may have a PF release surgery on my left if things don't improve.
Unfortunately I don't have any insight. I'm new to this scene and posting this has been somewhat cathartic. And reading your stories has been very helpful. so thanks
This forum is the first I've seen related to CP and adults. I am a 51 yr old male who works as an administrator for a local government in FL. I am also an adjunct professor teaching Developmental and General Psychology as well as Research. These teaching expreriences have given me an opportunity to tell my CP story.
I was born with mild hemaplegic CP affecting the right side. I have decreased dexterity in the right hand and foot compared to the left. While my fingers don't stick together, my toes on my right foot often do. I am left handed (obviously) and have learned to adapt to my limitations. I type with one hand and am blessed enough to be able to make a livining with my mind instead of my back (or my looks!).
I first noticed debilitating low back pain at the age of 7. Orthopedic doctors knew I had CP but could not determine the cause of the pain. After a spinal tap and other treatments, as a last resort they suggested to my father to take me to a chiropractor. My father carried me into the Chiropractor's office. He laid me down on the padded bench (no fancy tables back then) and the doctor did about three adjustments on me. I got up and walked out feeling 100% better. Thus, chiropractic has been a regular part of my health care since that time. As I have aged, I have noticed "flare ups" of back and left hip pain. This makes sense since the leg side is stronger and compensates for the weaknesses in my right side.
I have always had balance issues and fall occasionally. I find carpet is easier on my sensitive feet (especially the right one) than hard floors. Since I wore leg braces (to stretch the tendons in the my calf muscles) until I was 12, I practically never went barefoot. Thus, my feet remain extremely tender to this day.
I have not been able to find anyone else who could relate to what I am feeling, so I am hopeful that someone reading this will be able to identify with my issues. I feel as if my back and hip issues have aged me about 10-12 years. In other words, I think I have the back of a 60-62 year old man. My wife jokes that she's going to buy me a scooter to get around on. But for know, I am still on two feet. Living in a 2-story house has also presented "wear and Tear" challenges that will eventually need to be addressed (as they would with most aging folks). It's just that for methat day will come sooner rather than later.
I am a 54 year-old with Mild Cerebral Palsy & Asperger's Syndrome. In the last several years, my spasticity in my legs has gotten worse, & I went from being a good walker to needing to wear AFO's & using forearm crutches to aid my mobility. I am also now totally incontinent, both bladder & bowels. I also experience double vision. I am involuntarily retired on social security, & I used to be a Senior Electronics Engineering Tech working in the field of light industrial robotics.
I am 36 years old with mild cp. In the last year the pain my back from my high muscle tone has gotten worse. I tried chiropractic care but that failed because the chiropractor would not listen to me about my mild cp and tried to get me to take all types of supplements. I am now doing physical therapy and that has helped. I also just started going to a doctor of osteopathy and am hoping that helps. Currently I have health insurance through my employer and was wondering if I could get better services through medicaid or my state run health care aid
Im 20 years old and was diagnosed with Mild CP when i was born. As a Young child i had to wear Braces on my legs and supportive footwear. I Have never really had many problems with CP But as im reaching Adulthood Im starting to notice it a lot more often.
I Suppose i want to know if i will be walking in 20 years time?
1 year ago my 3 year old child got diagnosed with mild CP.
My child is mild, walks with a splint but I often wonder what it would be like living with CP as an adult for her.
I'm so glad I found this site.
I think it's wonderful that you can all share your experiences with each other.
I have a question to you all....
Have you ever heard of Selective Dorsal Rhizotomy? (SDR)?
Dr Park, St Louis, America.
I am considering it for my child as I do worry about her future.
If you were given the option would you have had the operation as a child?
The reason I ask is because you live with CP day in day out and you know how CP has affected you through life.
Many Thanks, All the bestq
Hi, I'm 33 years old. I was born with mild cp. I never had any surgeries that I remember of, but I do remember having to wear the leg braces and the special shoes when I was a kid. I don't have alot of memory of that time because i was so young. But my mom always told me about it when I was older.
Anyway, now that I'm older I have started having bad pain in my lower back and its like the pain runs through my right leg. Sometimes the pain will go to my knee and stop other times its goes all the way to my foot. Also I sometimes feel as though my brain is foggy or tingly. I used to have seizures as a child and I don't know if I may be having seizures and not realize it. I have talked to my doctor about all this but its not helping me. Has anyone had any problems like this lately?
Hi MamiJ !
I am 21 , and I have mild CP . From what I know , I was adopted at 3 and a half and my adoptive mother did physical therapy with me on her own , she said I used to shake while walking , and my hands used to be twisted inwards and my right knee wouldn't straighten , it would always bend .
Anyway , now , no one even knows I have CP , mine doesn't show at all . I don't shake , my arms and hands look as normal as any human who doesn't have CP - the only issues I have is I have to keep telling myself to put my heel first otherwise I will automatically put my toes first . Anyone else have to do this ?
And my achillies is very stiff , so stretching my achillies always helps . Exercise ALWAYS helps loosen up my muscles and joins . Stretching is the best thing to possibly do . Patiently , but every day - will make a big difference in how you move the rest of the day . I am guilty of not exercising or stretching everyday - just when I can fit it in . But I do try to work out 3x a week .
And I reccommend anyone with CP to exercise or atleast stretch those legs as much as you can . Do it in the morning , and the rest of the day will be a bit easier .
Now , I've been reading some of these posts . And I was stunned to find out that as time has gone on , many of you have noticed a progression with your CP around the age of 50 ..
I was reading this article : http://www.dfps.state.tx.us/Adoption_and_Foster_Care/About_Our_Children/Disabilities/cerebral_palsy.asp
And it states that CP doesn't progress . That , whatever damage was done as an infant , or in the womb stays and no further damage progresses .
Now if this is true , then that would mean that even at age 50 , it's not your CP that is worsening - it's something else .. Arthritus(sp?) ?
If we look at how people who don't have CP progress as they get older . They have arthritus , loss of balance , loss of motor skill , loss of coordination , flexibility ..
So, my only guess is either , not enough research has been done on CP , and it does 'progress' or get worse as age sets in , or that , its not that the CP itself progresses at all - but that our bodies and functions are slowing down just as they do in individuals without CP , so that's the exact same thing that happens to us , but that it also causes our CP to APPEAR worse , when it's not the CP itself that causes such loss in balance , motor skills , functioning , but it's just our bodies doing as everyone elses does and the CP makes it harder to cope with , just as CP makes the easiest movements for other people , challenging for us .
Hope that makes sense ?
I could see how CP wouldn't get worse - but that our muscles and functions get more tense , less flexible and worse as age goes on as most everyones body does with or without CP and our CP just adds to it , unfortunately . That's the only thing I can think of if it's true that CP doesn't progress as you get older .
I know I didn't help you very much MamiJ , but that is my experience on it . Does exercising help at all in any way for your CP ?
P.S. my toes will stick together or bend awkwardly when i get a stiff tension in my feet everyone once in a while , and I have to take my hands and actually unbend my toes and foot to stop the pain and to stop it from bending , and then I relax as best I can and it passes . I will notice this happen if I haven't exercised in a while , or notice it happen after I have had a vigorous exercise , but if I keep exercising regularly , it never happens ..
That's why I really think , for those with mild CP that exercise is one of the best 'medicines' for the CP .. It loosens the muscles and gets the tension and stiffness out .
Best wishes and I look up to all of you - CP is no fun ! But you're all doing the best you can and that's all that matters . And its unfortunate no one else knows what challenging the simplist things are , but how could they know ? unless they had CP too !
i am 38 years old and i have mild Cp. Within the last year or so i have noticed that both of my legs seem to tighten up when i walk. i wear custom made shoes,and the condition mainly affect my left foot and leg. i do have muscle spasms from time to time. i don't really know what to do about it. i am taking Flexeril for the muscle spasms but haven't noticed a change yet. it gets embarrasing because it always happens when i go out in public.
It sounds like in addition to your cp affecting your legs, you also have a bit of hemiparesis (weakness on one side), is that right? Though you may have fallen into a "mild" spastic cerebral palsy category as a child, as you are getting older, your symptoms are less controllable. Have you ever taken an anti-spasmodic such as oral baclofen or zanaflex? Botox injections can also help with spasticity. Are you exercising, keeping your muscles and tendons as loose as possible to prevent contractures? If your doctor is stumped, is it worth getting another opinion? If so, I would recommend that you see either a physiatrist (specializes in rehab medicine), a neurologist, or an orthopedist who treats adults with cp. If you have difficulty finding someone who specializes in cp, call a teaching hospital, talk with someone in a pediatric orthopedic office and ask if any of their doctors follow patients into adulthood. For example, our pedi ortho sees patients up to about age 30. If they don't, ask who in the community sees this group of patients. In the meantime, I would ask your current doctor for a prescription for physical therapy to learn some exercises that can help you prevent contractures. Good luck.
I am 33 years old and have mild spastic dipalegia. I had some developmental problems as a young child (trouble walking, running, poor hand eye co-ordination) but with the help of physical therapy, i was able to start to walk normally and for most of my life I have'nt been impacted by it. Over the last few years iI have noticed increasing spasming in my legs and back. My legs get very weak when I stand for eveoctors who apparen a few hours. I drop things a lot lately too and sometimes it feels like my hands won't work. The most frustrating part for me though is dealing with doctors who apparently know very little about CP. I have seen several doctors in the past few years who seemed to think I was crazy when I told them I had CP and two of them suggested I was mis-diagnosed! I is so nice to be able to share experiences with other adults with CP, especially mild CP because I think alot of people don't understand what we go through, even some doctors!
Only time will tell I guess. Everyone's experiences seem to differ but you sound a lot like I was at your age and things are going downhill for me. I wish you the best.
I am 33 years old and have mild CP. I have a also noticed that I do not bounce back as fast as I use to. Remaining calm and not being too hard on myself has helped reduce the number of spasms I get. Does anyone have any advice on how to deal with a brother or sister who still expects you to perform at the the same physical level as you did when you were a child/teenager? Any advice would be appreciated.
I am 18 years old and to be honest growing up with mild cp was difficult. my whole family always pushed me to be like them and do things that I just couldn't do and as a kid.... it made me really self conscious. my family believes that I am making it up or that I could if I wanted to. I am really afraid to drive... like I have anxiety's how even my slightest spasm could harm others. I don't drive and I don't want to but I would like to know if you guys do how do you feel? confident and in control? And if you are a parent with CP has it effected your parenting at all?