are there any adults here with mild CP?

[mamiJ]

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

[captwash]

Great to find this forum,  The best I’ve located for Adults with CP

I just turned 61 born Dec 26 1952. I have mild CP since birth, my mother went into labor late on Christmas day, and her doctor was not available when she arrived at the hospital. In those days they sedated her with ether, waiting for his arrival. In addition forceps’ were used during my delivery. Anyway mom had told me that my handicap was due to lack of oxygen at birth. It wasn’t until recently that I discovered there was an actual classification for what I have. “Cerebral Palsy Hemiparesis (left side)
Until the age of 10, I walked on the left toes .  At 10 I had surgery to lengthen my Achilles tendon, allowing me to walk on my heel.  My left hand and arm are smaller and have very little muscle tone.
I’m unable to rotate my left wrist very much, i.e., I cannot turn my hand with palm facing up. Hand dexterity is ridged and slow. There is some cross talk between my right and left hand, allowing my left hand to move better if I perform same function with my right hand. (Like moving my wrist up and down, or making a fist.  
Physical tasks seem to always take me twice long to accomplish, but they always get completed.  “IF THERE IS A WILL THERE IS A WAY”.  Growing up I had great family support and was treated as normal.  I did struggled in school, and was pretty much a C student throughout school, and I’m still challenged at reading smoothly, choppy especially when pronouncing large words. I did achieved a AA degree in Electronics (2 ½ yrs.) in 1973 and have spent the last 40 years in the computer industry in various positions, including teaching, course development and Technical and Marketing Support.
At 61 I’m beginning to have some issues with pain in my left hip, shoulder and lower back.
I recently got cortisone shot in my shoulder which has helped, and for my back I found exercising by bending and trying to touch my toes has helped.   For 2014 I’m planning to start swimming, at the local athletic club.

[WiserRanter]

same here ........

[maddi244]

Hello. my name is Madison. This is the first time I have seen a blog that talks about mild CP. I am 22 years of age. And I have CP mainly on my left side more then my right. I am dealing with severe lower back pain.  And it seems like it has been getting worse has I get older... if someone can help me I would really appericate it..

[WiserRanter]

I have mild CP on my left side and until about ten years ago really had no problems until what now I have been diagnosed with is Camptocormia or bent back syndrome. Looking for anyone else with the same CP results that I can correspond with to see what you are doing to help out .

[WiserRanter]

I see most of these posts are old so not sure that anybody is still looking for answers or have questions. I have a mild case of CP and now have developed Camptocormia. Anyone else have this ?

[rjCanada]

You are not alone. There are others out there (Youtube for one) discussing CP and aging. There are not a lot of studies on it, but here are some useful links:
Aging and CP resources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4183123/

http://www.griswoldhomecare.com/blog/spotlight-on-cerebral-palsy-1-cerebral-palsy-and-aging/

Factsheets - Aging Well with a Physical Disability:
http://agerrtc.washington.edu/info/factsheets/exercise
http://agerrtc.washington.edu/info/factsheets/depression
http://agerrtc.washington.edu/info/factsheets/sleep
http://agerrtc.washington.edu/info/factsheets/thinking
http://agerrtc.washington.edu/info/factsheets/employment
http://agerrtc.washington.edu/info/factsheets/falls
http://agerrtc.washington.edu/info/factsheets/fatigue
http://agerrtc.washington.edu/info/factsheets/visits/
http://agerrtc.washington.edu/info/factsheets/internet
http://agerrtc.washington.edu/info/factsheets/provider

https://www.google.ca/url?sa=t&rct=j&q=&esrc=s&source=web&cd=6&ved=0ahUKEwiIqNye05XTAhVH7WMKHXS7A7IQFghMMAU&url=http%3A%2F%2Fwww.ofcp.ca%2Fwp-content%2Fuploads%2F2014%2F04%2Faging_book.pdf&usg=AFQjCNE0p-liGJLc-SCUoDmQ2r0Kq25dlg&sig2=OzxsNYIQJwGZUvHMZilurg&cad=rjt

https://www.cerebralpalsyguide.com/community/cerebral-palsy-in-adults/

[Drummer7]

i'm a 36 year old guy and I was born mild Cerebral Palsy...Ive read most of the comments on here and I figured Id post something....CP is not progressive ( the CP itself does not get worse over time * ) but depending on how severe your CP is, after many years, or decades of walking incorrectly and struggling physically ( often walking with very tight and tense muscle tone) the CP can take its toll on your body Physically and cause you to possibly have 'aches and pains' ( arthritis, etc) much earlier on in life, or cause you to have much more intense 'aches and pains' than other people that dont have a Disability....CP by itself is not progressive and dosen't get worse, but living with CP for years and years can take a toll and have effects on your body

[npnp1234]

I havd mild cp too im 24

[LyamsMommy2015]

Hi my name is Lorin I am 19. I was born premature, My mom was hit by a drunk driver when she was pregnant with me. I was 2lbs. 14oz the doctors told my parents I would die or I wouldnt live to a certain age or I would never walk but Im perfectly healthy and about to be 20. I had to be in a lot of therapys mostly physical. Im not sure how many surgeries or if any Ive had because I was just a baby. The doctors told my parents to put me in gymnastics to help it go away. I was in gymnastics and I was a cheer leader but I stopped when I was 12. I had a son at 18 and he is 1 hes perfectly healthy but I wasnt sure if having him caused some things or not. Ive always felt fine but now sometimes I cant run because my ankle will give out. So I usually never try to run. My legs will hurt and I have to be under a blanket (heat) to make them feel better. My fingers tingle sometimes and hurt. Whats weird is if someone was to hit my hand, Ill be like ok whatever but other times its painful. The pain is usually in my legs. My back hurts a lot mostly lower back but sometimes upper. Im not sure if what Im experiencing is CP or not. If you have any answers please let me know.. i have not went to a doctor and asked what's going on.

[snoopydawn]

Hi, I'm now 45 with dystonic cp, I have 3 children who are very loving and well rounded individuals ,  my oldest is 18, then 16 and youngest is 12, to be honest when I was in my twenties I was in pain but you just get on with it and my children knew no different until they got older, then I explained my condition and they seem to take it in there stride, it's now with my 12 year old I am getting problems because of the pain and my energy levels are an all time low it's hard taking her out to parks, zoos ect but we get by.   My point is having co does not mean you can't raise a family, if that's want you want go for it, if you need to talk  that's fine too.

[pokey840]

I'm 53, and I'm sad to say that even though I was promised my cp would not get worse, it has. I have more spasticity than I've had in years. Because of frequent falls, I must use a cane. We are living longer than earlier generations, so Doctors have little to offer. My gp just shrugged and said I'll be aging faster. My physical doctor suggested more warm pool therapy, heat, and magnesium foot soaks. My neurologist suggests I do my coding from home. My pt says I need to lie on my side every 30 minutes to relieve my c curve scoliosis. I feel 700 years old

[Lmenn]

I live with mild cp. I am 44. I am so old I have never had the opportunity to get Botox, lol My muscles are really tight. I have gained ALOT of weight due to it being hard to exercise. The weight is hard on me over all. Wondering if Botox would help loosen my muscles and help me exercise. Anyone have thoughts?

[Joders1]

I am 37 have had mild cp all my life it only effects my right side.
When I was younger it seemed to effect me more I used to wear calipers to help me walk. I try not to let it stop me doing everyday things and have managed to adapt, but over the past few years my fingers and feel like they are turning to stone and hard to move, I have also been getting twitches witch can last for hours in my arm and leg. Don't know if try there is anything I can do to stop it, if anyone can help would be greatful as it can keep me awake most of the night .

[ewop123]

I was lucky to be able to go to Deepak Chopra's Chronic Pain Management program for a week.... and it helped alot.

I found the abyhanga oil massage helped so much. In the program you get a massage each day. I know that if I had kept up with it I would be in much less pain, but I haven't been able to find one in the city that I can afford.

[ewop123]

I am really glad to find this forum.

And hear that there are other people whose parents didn't help, or don't have the heart to keep up with boring exercises, or haven't seen a doctor in years... I read a lot of the summaries and it was like I could have wrote them myself...

oh... two more tools i've abandonned... infrared sauna and vibrating plate ...

my life is a pain management junk drawer, and it's not that they didn't work - just that I lack dedication...

[ewop123]

this sounds easy enough but I suck at self made routines... I actually stuck with the toxic job until the bitter end because I'm better on someone else's schedule..

so, in a way, I feel like if I am writing this all down and sharing it, there is a little bit of accountability there... I made these plans exist outside my own head...

I'm great at building toolboxes - not great at remembering to use them. Add to that box a chronic pain management hypnosis, I bought and totally forgot about.  And neem tea and tumeric... which has historically helped me alot with managing inflammation and spasticity.

It just occured to me that when I could use all these tools, I was in a really good place mentally and emotionally... and I was possibly in a better place physically. It will be interesting to see if these are just fairweather tools... or if they really help to ease my cp challenges.

I'm gonna go all holistic and new agey on this *****, and literally get back on my feet.

[ewop123]

Hi, my name is Pam and I am 36.

I have mild cerebral palsy - so mild people are surprised when they hear. For most of my life it looks like I probrably twisted my ankle... people ask me if I am okay or how I hurt myself. Then, at 30 I needed an AFO... and at 32 we started botox so that my foot would stop trying to tear out of the AFO.

I basically walked on my toe my whole life, so when we changed that with the brace and the botox.. I had some major pain... and then a period of freedom.. like I was more stable. 4 years later the burning pain in my foot is constant and the doctors keep telling me to use epsom salt baths and Ibruprofin. When the neuropathic episodes get really tough, I don't do anything.  

I was in a toxic and highstress job for 2.5 years - and I let that job become my life. Now, I realize it was a good distraction from the pain. But I also found myself eating and drinking to escape and gained 40lbs. I am releived to read through the thread and grateful people share about workplace anxiety. And, I want to say that in my experience it wasn't a confidence issue... as much as my fatigue and pain would fluctuate how much environmental busy-ness I could take. I notice for myself that when I am fatigued, my senory or perceptual filters start to melt... and everything comes at me louder or at the same volume... and it can get overwhelming or aggrivating if I don't catch myself... and consciously prioritize.. by asking for space, taking a break, focussing on my breath, getting grounded...

Today, I've hit a bottom. I am unemployed, in worse health than I have been in the past, and even though I have spent my entire week inside, my foot will just not stop burning. I love working. I will run out of money. So this is my plan to fight back.

I need to find a decent GP. I have a hard time with doctors, they just don't seem to take this seriously... I get a lot of "you look fine to me"... ice, painkillers... etc. I can't do massage or physio right now - no job, no money.

I can go to the pool. I can't swim, but I do have a floating belt... and I need to exercise. And maybe my foot is burning to get me to go back into the water. I am going to start a morning routine of meditation and self care. Try to cut out inflammatory foods. Funny, beers do help the burning and stabbing go away - but they are the number one no fly for neuropathic pain... appearantly, my pain hasn't read this study. But health first. And, my castor oil sock... soaking a sock in castor oil (putting your foot in a plastic bag) and then wearing slipper boots... it used to help alot with the burning and sore foot - but I stopped using it when I became all about work.

so my fighting back list 1. doctor 2. pool 3. meditation 4. castor oil sock
this is where I am starting...  with the goal of managing pain enough so I can be active enough to get a new job.  

Today, I am going to try to take a walk.. and that's all.

[JimBarky]

(this is the continuation of the above)

I guess the whole point of this, is it going to get worse from here, or am I going through a kind of "bad spell"? This all just escalated in about 10 months and out of nowhere. Literally. I have no money and my mental health is crap and my physical health is getting worse. Is the depression normal? I hate feeling like this, all the time, asking roomates to make sure things are locked away from me in their own house. I know I need help, but that's not really an option right now, I need to start making money again or else I'm on the street.

[JimBarky]

I'm recently 26 and only found out that I have CP when I was 19. I was diagnosed when I was very young, and I remember having braces and custom shoes or inserts. They used forceps on me and my biological mom believes that that's what created the damage. My legs seem to be the most affected. I went to therapy and my speech was terrible as well, so lots of speech lessons. I guess I had enough issues they were testing for Muscular Dystrophy as well. I remember being extremely clumsy and had a hard time walking and especially running.

When I was about 6 I was taken away from my biological mother and put into foster care. I went to my first foster home and I was soon after taken out of physical therapy and just continued speech therapy. My foster mother had me lay on her bedroom floor for a month or two because she only had one bed (and my older sister got the bed). I had extreme pains in my legs, and I was told that they were just growing pains. She gave me some sort of nighttime liquid medicine to make me sleep. I was at her place for about a year before my sister and I went to a different foster home, and were reunited with our two younger siblings. We were there for about a year and were adopted. I stil wasn't going to physical therapy, though I do remember going to the children's hospital several times because they were doing more tests. After the last time, a few days before  my 8th birthday, my foster mom told me I was "all better" and that was that.

In elementary school I always tried to do the track and field stuff, though I was unable to. There were some days that I could barely move because of the "growing pains" and I would get punished if I would not walk. Around when I turned 9 my first and middle name was changed as well, and I was taken out of public school and was homeschooled. We lived in the country and had a lot of land, so plenty of room to run. My adoptive mother would not let me take anything easy and expected me to keep up with everyone else. She had been a registered nurse some years before adopting me and my siblings. She was an EXTREMELY religious woman and would simply pray over things. There were a handful of times that I had heat exhaustion and I would become very tired and sore very quickly. I could mostly walk correctly, though I have always had a slight limp.

My mother started diagnosing my siblings and I with different mental conditions - multiple personalities, schizophrenia, etc. She told us that we were victims of ritualistic abuse, and that I could possibly have "thousands" of personalities. She took us to several uber-religious "specialists" in the ritualistic abuse field and they would do the laying on of hands, etc. She told us all we had different birthdays than what we grew up with, different parents, and that we weren't all related after all. This started when I was about nine or ten, and it just escalated. And of course I believed a lot of it, I was a child and she was my mother. I was told that my three younger half-sisters, who were adopted by their grandparents, were all dead and my biological mother and stepfather were in prison for life. I was told that I had a stroke when I was four and that's why I had problems.

As we got older it just escalated to the point that if she saw one of us children do something weird with our hands we would be accused of "triggering" one of the other kid's personalities via hand signal. We would also get accused of sending messages to each other via brainwaves. Her solution to this stuff was to start locking us up in our rooms until "someone inside confessed". So starting when I was about 14 I started spending more and more time in my room. Could only leave to use the bathroom and to bathe. They would bring meals to me to eat in my room. All I would do all day would be school work, basically several chapters of each subject so I was busy all day. If I had to leave the room to use the restroom, my brother and sisters would have to turn their backs away from me and I would have to keep my head down and hands behind my back. And they would sit in the bathroom or right outside of it to make sure I wasn't doing anything or getting into anything.
At first it was just a week or two, but there was a stretch that went for about 14 months. I remember getting cramps and stuff so bad during this period, and my "bedroom" was an enclosed porch with no heat, so there were two electric heaters in there but I still couldn't have liquids in the room because they would freeze in the winter. I would be crying because I hurt so bad, and all my mother would do is pray over me because she believed that it was just "someone inside" or a demon. I had to do all my homework and also my "journaling" all day every day. And the longer I would write the worse my handwriting would get, my hands would shake and she would not except my homework and journaling because of my bad handwriting. The "journaling" was basically her requiring me to write down the memories of how each of my "personalities" was created. Rituals and stuff. She wanted me to tell her how I supposedly sacrificed animals and even other children, and the more details the better. But my hands would shake so bad that I would beg to have a break. My back would cramp up and my legs would, just from sitting at a desk for so long.

One thing that makes me the most angry is that my adoptive family had assistance for me. They received a check at least every month and I had medicare/medicaid (can't ever remember which one) that they never used. My mother would use the checks to go shopping.

I've just gone on and on now. Definitely did not mean to go on and on quite like this, but that's my backround.

In 2009, when I was 19, I was able to track down my biological mother. My sisters were alive, and she and my stepdad had never been in prison. I was definitely related because I look just like my mother. One of the first things she asked was if I was still doing my physical therapy. I told her not since I went into foster care. She cried and cried and told me I had CP, and I honestly didn't know what it was. Once I looked it up everything just made sense. I felt relieved, knowing why I had had those issues. But honestly after I was 18 and worked my first job as a counselor at a summer camp I was just stiff and ached a bit when I got up in the morning. I didn't seek help because I didn't feel I needed it because I felt "fine", though I was learning that I could not perform as well as coworkers in physical duties.

The last several years the aches and pains have been getting worse. I've been extremely depressed and have lost my job because of my depression and extreme anxiety. My balance is worse. I love to paint and draw, but I just can't. In the last year I've had so many back and leg spasms. I was taken to the emergency room by a friend in February because I was suicidal, but that was it. I was there for the night and sent home. Was given some places to follow up with but I have no insurance. That's when I took a LOA from work but ultimately lost my job. My car was all but totaled in February by someone else. I can't even get my family to take me to any clinics or anything. And the worse thing is since I look "normal" people just think that I'm making up and faking the pain.

I start a new job at a Staples store later this week, making almost half as much an hour and only working 25/hrs a week and I'm absolutely terrified. I'm not any better than I was in February and I'm worried that I won't be able to stand that long, at least not at first. My legs HURT and I'm exhausted all the time, without doing anything at all. My memory is been getting worse, mostly just little things like names, numbers, etc. My digestion is a mess.

[binoor111]

if anybody knows the treatment of cp in adults in any traditional medicine ayruvedic medicine or homeopathy etc

[Tuckman]

Hi Hagecl,

My name is Steve and I am 34 with 'mild' CP. My left side is affected. Kudos to you for your efforts in helping your son as much as you have. My mother did the same for me. Like your son when I got to 16 years of age, I'd had enough of the physio grind. This has been ongoing since I was 4 years old.

For me, my decision was based upon doing my own maintenance. My family purchased a cable operated gym and I used that a heap. It was also based upon a lot of uncomfortable feelings. Memories of the grind since I was a child, some bullying at school and my friends starting to get interest in girls and I thought I had no chance of this. In short, I had a very negative self-concept of myself. I have pushed myself hard for 30 years and am only starting to deal with the emotions now. There are elements of inferiority and shame attached to having CP for me. Everything is harder having CP.

I used to say things like 'people have it worse' and this is true but it doesn't deal with my own emotions. It's just a shield.

In the end, having CP is a battle and your son is under physical strain. And physio is a process of enduring more pain to squeeze out the 'bad' (stiff) pain in the body. It's a rare person that looks forward to this process.

There might be some biological (hormones) and psychological components mixed with that. Your son has to have some hope his life will change for the better otherwise there is no incentive for him to change. His efforts need to have a purpose.  

[richard83]

im 32 and had mild cp and also epileptic seizures all my life and still do, had to wear a foot brace for my left foot and there was very little function of the left hand had surgery when i was 8 to straighten my left foot they took the tenden from the right side of my left foot and put it on left side of my left foot.i did phyiscal therepy for many yrs as child, ive gained movement in my left hand i still get spazmatic movement in my left side which to my therory from my experience with cp and also epilepsy that ur body is having a myoclonic seizure which only a couple nuerons misfire causing that spasm to the side of the cp ,i actually can control my left hand with my right using single finger movements  but i cant still turn my left hand palm up ive tried breaking my arm working out the muscles but nothing work its so aggervating but if ur having spasms i would seea nero and get a mri to make sure there isnt further problems. i loved reading these post there very inspirational and makes me want to further my search to some day to figure how to cure it or make it easier on those that have it .it really effects everyone including me

[munch3105]

hi I'm 27 years old with mild cerebral palsy with a muscle wastage disease called dystonia. my cp effects my right side, but more so my right leg. I was diagnosed at 9 years. For years my parents new something was wrong with me. I wasn't like other children at school. even I knew there was something not right.
as a teenager I was under a orthopedic surgeon at Birmingham children's hospital. He decided to start giving me botulinum toxin in injections I would have them yearly as a teenager, wearing a splint of a night.
When I turned 16 I was then transfered to Queen Elizabeth hospital to there rehabilitation centre. I was having botulinum injections more frequently due to spasm and pain. but my dystonia was playing a major part in this. Because the majority of muscles were getting weaker, so they wasn't working correctly. so my muscles which wasn't effected was working more.  the angle of my foot started to change.
In 2012 I was having botulinum injections more frequently, but it wasn't managing the pain.  I informed the rehabilitation centre and they stated it was normal for the leg to become resistant to the injections.  They gave me a muscle stimulator to try and help reduce the pain. didn't help.  was put on baclofen medication that helped with the pain, but didn't do much.
In December 2012 my foot and toes started curling to the left hand side and I couldn't get out of the position.
In 2013 it became worse I had to have my leg minuplated to be put back into a 90 degree angle and had severe plasters to help put my leg in the correct position. I was then fitted with a hard splint.
I was told my body had became immune to the botulinum injections.  
as a few months went on my calf muscle was shrinking more and more. the pain was getting worse and I couldn't get my splint on as my foot started to curl once again and toe walking. The rehabilitation centre wasn't doing much at all and I felt something needed to be done.  my physio who was from a different hospital suggested I went and seen an orthopaedic surgeon as physio wasn't doing much as the pain and spasm was chronic she couldn't do much with Me.
19th September 2014 I had a tendon tentomy where the surgeon cur my achilles tendon to release it to try and put it bk into the 90 degree angle. I was reviewed 2 weeks ago it wasn't successful so I've now got to have a tendon transfer.
I'm absolutely petrified I feel my condition is getting worse and I can't cope with the pain.  normally before 2012 I was able to get around normally.  now I can't walk correctly the pain is unbearable I'm on baclofen and morphine.  I was told when I was younger I would stay the same but I'm fearing the worse my mobility is dreadful. can anybody recommend anything to help me deal with the pain please. my email address is ***@**** I'm open to any suggestions. just worried I won't be able to walk eventually x

[ag1298]

I am 29 year old female with very mild spastic hemiparesis (really just my left leg). I only found out this past year that I actually had CP. I started googling stuff and kept coming across CP online and confronted my mother about it. She admitted I was diagnosed at age 2, but my parents chose not to tell me as they did not want me to feel different. I never received any legitimate therapy. My left foot is visibly smaller, and my left leg in general is smaller than my right w/ less muscle tone. I have always favored my right leg. I have limited flexibility in my left ankle. I dont think anyone really notices with the way I walk. I think I have trained myself to walk as normally as possible. Sometimes I do drag my left foot when I am tired and trip more often on that side. I have less grip strength on that side- I notice this when wearing flip flops, etc.- my shoe sometimes flies off. Over the last 5 years I have noticed an increase in hip pain. Mainly if I walk for a while on an uneven surface. I feel like this is probably related to CP. Does anyone know why this is? Is it tight muscles? Is this related to me aging? Is CP degenerative? I am concerned about things getting worse as I get older. I am trying to work out a lot and focus on building my strength in my legs, but sometimes I wonder how much I can really improve it. If anyone has any exercise tips I would appreciate it. I am very thanksful it is mild, but I also feel like I am pretty late in the game to make much improvement.

[lanmarie4]

Love this forum. I was diagnosed with spastic diplegia cerebral palsy when I was two. I had a walker, leg braces, some other things too. I am 26 now. I have read before that Cerebral Palsy doesn't get worse. I have trouble believing that. I work at a job which requires me to be on my feet all day. So every morning I wake up in pain in my legs. I now have arthritic knees. Sometimes my toes stick together. And I experience hip pains when I run. Seeing that people with cerebral palsy age earlier than regular people, I don't see how it is said that it doesn't get worse than this. I don't like hospitals so I never have seen a doctor about any of my pain.