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CP getting worse

PeteH Community member Posts: 7 Listener
Hi All, i am new here and i am hoping that someone out there can help.
I have Very mild cp and am a very active person, i have always tried to be out and about doing various sports specifically cycling. I am 36 and was only diagnosed about 5 years ago (although it still depends who i talk to) as i was braught up not to see the doctor unless you had no other option, but, over the past couple of years my medical problems seem to have got worse to the point i am having trouble with walking and other areas that are affecting my day to day life, i have just been refered to a neurologist to find out why as cp is not supposed to get worse. Please can you help as i have no idea what to say to them or what questions i should be asking. I am scared of what they might tell me...Please Help.


  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
    If you look at some of the other posting on this site, you will find many of us who were led to believe that our CP was not progressive etc. That was what many of our families were told decades ago; now doctors are starting to look at things differently.
    CP in and of itself is not progressive but, as we go through our everyday lives, we use the muscles in our bodies differently to accomplish same things non-disabled people do. Since we learn, from our earliest days, to compensate for our deficiencies, compensating becomes "normal" and we don't even realize that we are doing it.
    Compensating continuously, however, places stresses and strains on muscles, ligiments and tendons which can lead to secondary conditions like arthritis, herniated discs...etc. so while the CP didn't "progress", it was most likely the primary cause of many other things that you may experience now.
    In my case, I had to stop working. I can no longer stand for any real length of time. I have lost my ability to write, unless I form each letter like a child learning to write. I now must wear leg braces because I was putting tremendous strain on my hamstrings, achilles tendons, to such a degree I was concerned about tears or a rupture. Try to find a Dr. who handles movement disorders. Keep in touch. Joyce
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
    Pete, Don't blame yourself for not seeing anyone sooner. In my opinion, it isn't even your parents fault. Like mine, they probably believed what they were told, namely, what you see, is what you get. As long as you were getting along normally, more or less, there was nothing to be done. There really weren't a whole lot of treatments back in the 60's when I was diagnosed. They tried "night braces" at bedtime and physical therapy hoping my brain would rewire itself and straighten me out but, of course that didn't work. The "night braces" were made of leather and steel and I wouldn't roll over or anything so I ended up waking my parents at night. That made the braces disappear quickly! The physical therapy was done for a short time at home, after my parents were taught what to do. In short order, that stopped and I just was left to get along. When I complained of pains, I have spasticity, it was explained away as a result of playing too hard, being tired etc. which made sense to me, as a 4-5 year-old because it would seem better in the morning etc. Looking back, it is more likely that my parents knew there was no solution back then. All they knew was, it wouldn't kill me and I was in a better position than many with this problem. In my late 20's, early 30's, I realized I had some issues that had to be addressed. I finally found a neurologist who specialized in movement disorders. I went through alot of neurologists before finding the right one because I didn't know this specialty existed. I had to "kiss alot of frogs" but it was worth it in the end. This neurologist tried giving me some anti- spasm medications but they made me ill. He then tried Botox injections which turned out to be the best thing for me. They relieve my spasticity alot which helps with my walking ability, my lower back pain and my balance issues. The problem is not all doctors are equal, as I found having moved across country, after my other doctor left clinical medicine. I still get Botox but my new doctor doesn't inject so deeply into the muscles etc. My braces or orthodics, as some call them, are made of light-weight, milky plastic and they rise to just below my knees. They help place my feet in a more normal position as my feet turn inward when I walk. They take the strain off my hamstrings and ligiments and tendons that I believe were in danger of tearing or rupturing due to overuse/stress from years of walking incorrectly. These overuses and stresses have caused damage within my body in many ways and, caused my body to age differently/faster than it would otherwise. Doctors now are beginning to look at these secondary conditions in children but we adults had to lead the way. Regards, J
  • PeteH
    PeteH Community member Posts: 7 Listener
    Thanks Joyce, Thank you for replying, I have looked at the posts and it has made me feel a lot less alone. This is the first time i have spoken about my condition to anyone, even my friends and some of my family have not been told that i have cp, they thought that just walked funny and my parents will still not talk about it, because of this and the fact that i was only taken to the doctors a few times as a child they are having trouble giving me a proper diagnosis. This time i will see it through to the end as i do need to know and i need the help. but i must admit that the thought of getting worse when i have had such an active life scares me a lot. i have just been told by my doctor that Physiotherapy and Hydrotherapy may be the best thing for me at this stage but i do need painkillers now. i think it is my own fault as i should have seen the doctors a long time ago and taken charge of the situation. Please can you tell me what braces do? do they help? All the best. Pete.
  • helpathand
    helpathand Community member Posts: 17 Connected
    Hi Pete, You really are not alone. I have just joined this site tonight. Born in the 1950's there was nothing like this and I would say I am just beginning not to feel it is my fault if I have a day with pain or something because I "ought" not to have done x or y yesterday.

    My mother cannot cope with pain of any kind or emotional issues too well - maybe this is the era she came from -always told me physio would solve all and because I kind of rebelled having had enough and wanting different life choices at uni, wanting to be like others - I have wondered if I made a rod for my own back. Actually recently having braved orthopaedic services and being taken seriously was very healing. As we age things change but it is true of all my non disabled friends too.

    Try and forgive yourself! Hydrotherapy or Jacuzzi's are great if you do not have access issues because of slipping on the floor to get into them. Here they only gave 6 sessions.
  • liayn85
    liayn85 Community member Posts: 31 Connected
    Hi Pete,
    I'm sorry to hear that you are having difficulty. To clarify things about CP, the initial trauma does not progress (supposedly - I would call the maladaption of the brain post-trauma progressive), but the symptoms and conditions associated with CP can. I am also in my 30s, very active, and also have very mild CP. Over the past 3 years or so, my symptoms have worsened. More than ever, I have to think about walking and purposely lifting my foot. There is a lot of premature aging happening, and on top of that things that did not bother me as a child do now as they have impacted me more.
    I would definitely try to connect any habits with the symptoms you are experiencing, and let your neurologist know. I am sure that an activity at least significantly contributed to the worsened symptoms. For example, years of driving two hours a day worsened my unaffected side because of the overuse, and now I have hip problems. Try to make connections, even when it seems unlikely. As far as what you should be asking him, make sure he has experience with adults with CP and make sure he has a more "modern" sense of the condition, since many people, even adults and specialists, view it as a kid condition. Make sure he is looking out for you, and if ever he says you need to spend more money (aka surgeries, procedures) get a SECOND OPINION. i'm guessing that a friend or someone referred you to that neurologist, and that is wonderful since that person is probably very reputable. I prefer nurses and physical therapists... but I've probably just been misdiagnosed too much. You also need to talk to him more from the point of view of the neuromuscular and neuroskeletal conditions and other symptoms you're experiencing!! Not from the point of view of CP, since from a medical standpoint CP is an umbrella term, not even a real condition.
    Best of luck to you!!
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