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are there any adults here with mild CP?

I was born with mild CP. The spacicity was in my legs and with the help of braces and therapy, I was able to walk "normal".

I am now 38. I have always had almost no muscle on the left side of my body. If I was very tired, sometimed I would get a little limp,but that's all.

Now, I have been having neuropathy, and most recently spacicity in arms and legs that becomes quite  painful.

Sometimes, I notice my fingers and toes sticking together.

What I'm wondering is do any other adults with mild CP have these symptoms?

The dr's have no idea what is causing my issues.

Thank you for reading
75 Responses
Avatar universal
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.
Avatar universal
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.
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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 :)
Avatar universal
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.
Avatar universal
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
Avatar universal
To All:
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.
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