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

[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.