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My experience... + questions

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Old 03-11-2010, 04:26 AM   #1
Join Date: Mar 2010
Posts: 5
informeduser HB User
My experience... + questions

Hello everyone,

I'm a 26 year old male with mild CP. My twin brother and I both have it. Apart from a minor leg length discrepancy (my left leg is 3cm longer than my right) and the fact that I walk with a slight limp, I appear perfectly "normal" and my day to day life is not affected in anyway whatsoever. Granted, my muscles are naturally tight and tense due to my condition and the right side of my body is somewhat stiff (I can bend the toes in my left foot for example and I can bend my right foot but I cannot bend my toes in my right foot. I try to but I just end up bending my foot somewhat). I have a thin frame and am slightly underweight but apart from that it is not evident to anyone that I have this condition. My mother never labeled my brother and I as having "CP" but just stated we are the way we are because we were born early. (We were born three months early.) We had surgery on our legs to help us walk better, wore braces while children, and were in adaptive PE classes - even in HS but even with everything we had to deal with, we were never treated like we were different than anyone else by our family.

I just want to say to everyone on this board, especially the parents - do not always believe or allow the doctors and the specialists and whoever else to dictate what your child will and will not be able to do. My brother and I had a very small chance of survival but we made it out of the hospital. Doctors told my mother we would not be able to walk or might suffer some form of mental retardation (doctors words) but we have proven everyone wrong. Not only have we done what others say we could not but we have excelled as well. Iím considered to be quite smartÖ I studied in the US and in London. My brother and I have traveled around the world and I now live overseas and have my own business.

Never give up hope because anything is possible.

And now for my questions:

1) Does having CP however mild or severe it may be put one at greater risk for falling ill or acquiring other illness in the future? I do not think it would but I want to ask anyway.

2) I have read elsewhere that life spans of people living with CP tend to be less than those without it? And that those w/ CP tend to age faster Ö Is this true? Are there any studies supporting this? I realize in my case I am quite possibly putting extra pressure on my legs and my body because of the way I walk.

3) What can I do to better take care of myself now? From what I understand the condition does not worsen over time but aging may make the symptoms we experience worse. Is that correct? What vitamins & supplements can I take now to strengthen my bones / enhance my immune system?

4) Is follow up every so often important even if Iím not in pain? How often should one see a PT / orthopedic specialist?

Thank you!

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Old 03-12-2010, 10:31 AM   #2
Join Date: Feb 2007
Location: usa
Posts: 448
CandP HB User
Re: My experience... + questions


I'm surprised that anyone hasn't replied to your post (hmm, not too long ago this board was VERY helpful, lol)

I, too, have mild CP. My cp happened after birth and because I suffered what is known today as Sudden Infant Death Syndrome - I started suffocating in the hospital crib but was spotted and saved. I think I suffocated for about 1 minute, or maybe less.

I have tensing issues and that effects things like carrying a tray, lifting a full glass, or even holding a plate with one hand and serving myself at a buffet, for example. My right side is more effected, or "less usable," so to speak. And my speech is a bit slow, and low. I have been passed for being "deaf" as my speech is probably the first "signal" of any disablity. The other stuff I meantioned about are pretty much exacerbated in the presence of others - as I have never really felt comfortable "being watched" and as a result, I tense 1000 percent more than.

Now, as for your questions - this is what I know from my own research.

I think people with CP live a normal life expectancy. Now, as you know, CP ranging from very, very mild (like us) to extremely severe (as in total dependance on others.) The only thing I can think of is this: if tensing is very evident and persistant, it might take a toll on our hearts, so if there is a pathological cause to early deaths with CPers, it might be that "we" might go from heart attacks because of this reason. As far as other less severe issues, I think we might be more prone to sufferring from Arthritis. I'm 33 and I feel joint pain, and have been feeling it for on/off since age 22!! I think that we fall more than others, and we tense, so arthritis is a possibility.

As far as falling: I think this is another "inconvenience." I find myself slightly lossing my balance more than 10 years ago. I have fallen a lot in my life!! But I havent broken anything - it was moreso tripping on things like rugs, losing balance on cracked sidewalks, small inclines on floors etc. So, working on maintaining balance is a must.

As far as growing faster: don't know, that could/is dependant upon the severity of one's CP. Again, tensing of body/face/hands might enhance the aging process - don't know. I, for one, am 33 and look 25 But the fact that most of us w/CP are quite skinny (again, b/c of our tensing we burn more calories), we usually look skinny and skinny people tend too look older as they age?? Just my thoughts, but I'n not a doctore here!

As far as illness: Have you heard of any CPers getting MS, or Muscular Dys? I haven't. Now things like cancer of any sorts, is more due to our genes and heredity, so if that is the case then we, too, can be incline to suffer those illesses like anyone else.

The only thing that has worried me more than anything is the fact that the past 3 years I find myself choking on food. Like not chewing it that well and having some "difficulty" moving the food around and sometimes swallowing it unchewed. Now, the confusing thing is that I never had this problem before, causing me to think that maybe my mouth/tongue weaken? Have you experiencedd this too?

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