Hi guys,
Throught my life I have gone through many treatments to improve my mobility as a result of my cerebral palsy ever since I was real little. I was born 3 months premature and only weiged 2 lbs. Due to my under developed lungs I had severe asthma and had to get a trache installed. I got that removed when I was around 5 years old or so. After that I had a series of hamstring and heelcord releases that actually worked quite well. After those surgries I was able to walk short distances without my crutches. I still had problems as one of my feet pointed inward quite a bit and I was always tripping over it. When I was 13 they did some experimental surgery to rotate my hip out and place a bolt in it so my foot would no longer point inward. Now my knee is straight but my foot points out. It works out a little better that way though. My Dr. said that the foot would eventlually correct itself but it has not. Maybe thats another future surgery . I would like to go back to a foot brace and maybe that would help but at the current time my medical insurance no longer covers braces. I'm working with my provider to see what I can do.

My most recent surgery was the installation of a baclofen pump to help reduce spasticity. See the baclofen category in this forum for my experiences with that.

One important point that I have been slacking on is my streatching. An important part of dealing with spastic cerebral palsy is to do constant streatching to keep the muscles from atrophy. I have been working on getting better at working it into my schedule and have noticed some improvements.

Please post your experiences and questions on treatments here. I am curious as to what others may have gone through from childhood.

Hello Mike,

I was born 2 months premature at 2 pounds 8 ounces. I have Spastic Diplegia CP and I will be 56 on June 3. I have had 6 muscle lengthening/relocations on my hips, knees, ankles and feet from the ages of 5 to 17. I use Baclofen orally to ease skeletal muscle tightness and other than some osteo arthritis in my shoulders, elbows and hands, I do pretty well. I walk using 2 metal canes and I am no stranger to using a wheelchair.

We with CP are not immune to age related problems that Able Bodied people suffer

I've had a hamstring release once, although my CP is very mild, it didn't really have an effect because i neglected to do my streches

I weighted 2 pounds and 8 ounces when I was born, plus the doctors told my parents that I wasn't going to live. I have heart conditions, I had heart and lung surgery when I was 2 days old.

...........

I do work on a recumbent cycle (stationary bike in a seated position) and that takes my hips, knees, and ankles through a nice range of motion. This helps with spasms & tightness.

Additional benefits are cardiovascular and that helps with weight control etc. etc.

Doctors said my range of motion was excellent so therefore I didn’t need surgery. Stretching is very important. I do it 5 times a week. The therapist I had when I was young would be pleased to hear that.

Every time I try to treat my CP it backfires, so I have stopped trying.
When I was 13 I took muscle meds. By 17 I was hallucinating and experiencing other things of that nature. I guess no body was monitoring my meds and I ended up in a physic ward for 8 months. When I was 19 I starting talking them again. By 23 I started hallucinating again. I haven’t taken them since. I became depended on them to sleep. I didn’t like that. Everybody handles meds differently. Muscle meds scare me but they might work good for you.

When I was 24 I did a trial of the baclofen pump. Doctor must have not done it right and I got a spinal headache. Worse pain I’ve ever been in.

So after that I figured God was telling me something. Leave your CP alone!

Hi BlondieBlue,
I had the same problem when I got my baclofen pump. Got the spinal headache after the trial. Decided to go with the pump anyway and had it installed then got the headache again...lasted for about 1 month and you are right...worst pain I have ever felt. Never experienced anything like it. Had to end up going back to the hospital after a couple weeks of the pain because I could not keep any food or fluids down. I have now had the pump installed for close to 5 years and its going great. I have an appt. in a few weeks to get it changed out because the battery is almost dead. The good thing is that they do not have to re-do the spinal part...they just replace the pump so I do not have to go through the agony of the spinal headaches again.

-Mike

I'm a parent of a 16 year old with spastic hemiplegia. He's had hamstring release surgery once.

He is non-verbal ( and so far won't use any kind of communication device so I get very little more than basic info from him about himself) so I would LOVE to hear answers from you all on this question - is it likely that he is in pain from the constant tension on his muscles and the imbalance in his body?

He has one wrist that stays bent, and that entire arm up to the shoulder is usually pretty tight. I massage him daily but worry that it's painful. Is it? And if so, what things provide relief for you?

Hi Pamela,

I am a mother of a 29 year old daughter. She has spastic hemiplegia. She had hamstring release once as well as your son. She is very verbal and the answer to your question is that your son could very well have pain or spasms from the spasticity of his muscles. I don't think the imbalance would cause any pain. Have you tried acupuncture? He can be very helpful.. My daughter also takes oral baclofen and that seems to help. You may want to look into Botox injections for his tight muscles. My daughter has been on those injections for 15 years. I hope this helps some.


Aleese

Hi everyone,

I am a mother of a 11years old son. Since he was born, he is suffering paraparesis, a partial paralysis affecting the lower limbs.

We heard about the method of Dr. Ulzibat, and we decided to do the intervention one year ago. And I have to say how glad we are, with the successful results. Now he does many things, he couldnt do before, like ride an exercise cycle or walk by himself (with a little help of a walking stick).

There is more information about this technique on the website: http://www.ulzibat.es/ulzibat_en/welcome.html

I also hope this helps someone!

This is really very much informative post. Very helpful those are going through this. Thanks for sharing.

What is a name of a paralysis condition caused by being stabbed in the back (the spine)? I a condition where only the lower body is paralyzed, basically one that makes someone need a wheelchair. I was looking this up, and I found the Brown-Sequard Syndrome, but I want to know others as well. I also need to know the consequeces of each condition, such as sanitary issues or seizures and stuff that would occur because of the condition.
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I do not have any personal experience of CP but a freind of mine has twins who were premature who have been diagnosed with it. They have recently been seeing a McTimoney Chiropractor (in the UK) with fantastic results in as little as 4 weeks. The Chiropractor emphasisded how important it is to do stretching exercises too!