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    Old 02-05-2005, 04:19 PM   #31
    musicmaker650
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    Re: cp symptoms increasing with age

    I have more than paid my dues having been born affected with CP. I am the most senior member of this CP forum, and I am proud of my accomplishments so far. If I come across pretentious and crass, it's because many here have no idea what it is like to live successfully with such a thing as CP, and for that matter, they have no real idea exactly what Cerebral Palsy is. To me, there's no excuse for this, most of you aren't stupid... are you

     
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    Old 02-06-2005, 01:00 PM   #32
    musicmaker650
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    Re: cp symptoms increasing with age

    The "unhappiness" comes from understanding that the advances and education, medical information and teaching materials we made available to all persons with CP in the 50's and 60's and 70's were forgotten or ignored to this day. The "new" othopedic procedures of today, were pioneered in the 50's and 60's. Mainstreaming has left many people forever lost and confused. Early and accurate diagnosis of CP is never done anymore, and subsequently babies are being kept from early thearpies, procedures and help, that are so critical to their young lives... Sadly, it does seem like common sense doesn't exist in persons and institutions dealing with Cerebral Palsy anymore. We are intelligent and productive people, with much to give to our society and eachother. People with CP are being "lumped" in with other disabilities that have no bearing or basis with CP. People like you DavidBahm, are dealing with physical and maybe even mental issues that you should have been aware of long ago, and at least, given the tools and knowledge to deal with all this much earlier in your young 37 years...

    Come to think of it, this does make me angry too. These points should make us all a little unhappy and angry, don't you think?

    Last edited by musicmaker650; 02-06-2005 at 10:13 PM.

     
    Old 04-03-2005, 07:33 PM   #33
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    Re: cp symptoms increasing with age

    Hello everyone! I am new to the site. I am 23, and my CP was diagnosed very early in life b/c I was a 2-month premature twin born in a small town hospital that had no plan for dealing with such problems. I have been very upset of late over my worsening problems. I don't know the classification of my CP, but my left side is the most affected side. I have had the baclofen pump since June 2000. There were complications with the surgery b/c the doctors didn't notice a hole in the catheder, and it wasn't sewn in tight enough to the spinal column, so I ended up with 2 CSF leaks, horrible headaches, subsequent blood clots, and a vena cava filter. The benefits have been AMAZING since then, until my last refill.... the doctor ordered a 50% increase as opposed to the normal 10%!!! Since then I have experienced horriblr side effects like numbness and tingling in my hands, frequent and urgent urination at night and increased weakness in my left lower leg, which I just had shortened about 5 weeks ago, so my recovery has been set back. I hope to feel much better after the pump is turned down tomorrow.
    Sorry for rambling, but my reasoning is to show people with the pump to do plenty of research on it so you know how much of a change in dosage is acceptable, not trust the "expert physicians."
    I have recurring bunions on the right great toe, arthritis, lordosis, nerve damage in right hand due to overuse, a lazy eye on left, left leg was longer---led to many back, knee, ankle problems. My left leg is also bigger around. Does anyone have this problem? I am very self-conscious about it. I have found much comfort in the many messages I have read tonight. I didn't realize there would be so many people out there who are affected physically, but not mentally. Thank you to everyone who has posted!!!!

     
    Old 04-03-2005, 09:30 PM   #34
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    Re: cp symptoms increasing with age

    Hi loverofgoldens! (I'm assuming your screen name refers to the dogs... I've had 2 goldens before, they're my absolute favorite!).

    My left leg is also bigger all around, but just because I am so strongly left handed/footed that I barely ever use my right side.

    I'm sorry you've had so many problems with the baclofen pump, sometimes I consider getting it, but I'm not sure the benefits outweigh the risks quite yet.

    I'm a twin too! Is your sister/brother healthy? My sister is pretty healthy now, except she has asthma, she was very lucky!

    Hope to see you posting more

    ~Katherine

     
    Old 04-04-2005, 09:03 AM   #35
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    Re: cp symptoms increasing with age

    Hi Loverofgoldens!

    I'm 26, spastic diplegic. I've posted a bit about the baclofen pump. I don't have it, but have made a point to research it as much as possible. So far, for me, I can't reconcile the risks. I'm fortunate enough to be gainfully employed (full time), and worry about the risks to myself and my career track (missed days at work due to the all-too-common pump complications), if I get the pump. I hear your story a lot. The pump works wonders, when it works! But when it doesn't, it's dangerous and makes people miserable. Good luck to you! I think you're very brave to have taken this step...

    NJenn

     
    Old 04-06-2005, 01:14 PM   #36
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    Re: cp symptoms increasing with age

    Yes, my screen name refers to golden retrievers! They are the greatest pets! My twin brother died after about 2 months in the NICU... at that time too much pressure was used with the ventilalors, and the treatment itself killed healthy tissue faster than it could be replaced, a common problem in the days b/f synthetic surfactant.

    I'm happy to report that decreasing the dosage of baclofen has decreased the side effects I was having!

     
    Old 04-07-2005, 01:12 PM   #37
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    Re: cp symptoms increasing with age

    So happy to hear that the problem was fixed and that you are feeling better. Do you feel nauseaus after having your dosage increased? Assuming a "normal increase", not the nightmare increase you recently had.

    NJenn

     
    Old 04-12-2005, 10:26 AM   #38
    NJenn
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    Re: cp symptoms increasing with age

    Sorry to hear that the itb appears to be causing these cognitive symptoms. I've read just about every journal article out there on both oral baclofen and itb, and don't recall coming across anything about this. Of course, that doesn't mean that the link isn't there... I will pubmed and let you know what I find. I finished my BS in Cellular Biology with plans to go to med school as well. I ultimately decided that I needed a career that allowed me to sleep normal amounts in order to feel human, and I knew that med school would do a number on me. My spasticity goes through the roof when I don't get enough sleep! I finished a master of public health last year, and am looking at both PhD and PA programs now. Not sure if I still want to take the clinical route, or if I want to sit in the ivory tower. Oh, decisions, decisions! I do hope you're able to go back to med school-- what's your area of interest?

    Nicki~~ 26, spastic diplegic, sometimes walks, sometimes rolls

     
    Old 05-01-2005, 03:51 PM   #39
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    Re: cp symptoms increasing with age

    Jimslade,

    We sound almost the same except I have hemiplegia. Some days I look like absolutely nothing is wrong, and others I am hunched over, stiff as a board, and dragging my leg like a piece of dead wood. I get epidural injections in my low back, botox, and I have lordosis as well. My latest and greatest feature is to have myspine starting to curve and now my ribs are displacing and causing pain. UGH! It just isn't a good thing to get old I guess.
    Hang in there.

    Lastramy

     
    Old 05-16-2005, 06:26 PM   #40
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    Talking Re: cp symptoms increasing with age

    Hi--I'm new to the board--43--female, and I have spastic diplegia cerebral palsy. I learned to snowski in Winter Park, Colorado at the National Sports Center for the Disabled. Lots of children and adults with c.p., retardation, mental illness,strokes, and amputations go there, and they have other sports programs. This is something you Dave Bahn might enjoy. Thanks for the med info on Diclofenac. I've only been on oral Baclofen, which is so... so... Has anyone out there who is an adult with cp had a knee replacement? I have severe OA and walk with a walker. I am considering the arthroplasty, but am unsure. I've also had 2 heel cord lengthenings, one in 1981 and one in 1998, plus a bunionectomy and toe straightening on my left foot. Balance is a little worse following surgery. krisk

     
    Old 05-16-2005, 07:25 PM   #41
    NJenn
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    Re: cp symptoms increasing with age

    Hi Krisk,

    Welcome! I'm Nicki, 26, spastic diplegic, who takes oral baclofen as well. I walk with crutches, around the house independently, and use a manual chair for longer distances. I've heard of hip replacements being done successfully on persons with CP, but can't find anything in the literature about knee replacements. Have you talked with an orthopedic surgeon who's experienced in working with adults with CP? They're hard to find, but essential. How were the results of your toe straightening? A friend of mine had this done recently, and his spasticity won that battle. The toe went right back where it was.

    Last edited by NJenn; 05-16-2005 at 07:26 PM.

     
    Old 05-17-2005, 09:44 AM   #42
    Steffers2318
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    Re: cp symptoms increasing with age

    Quote:
    Originally Posted by NJenn
    Have you talked with an orthopedic surgeon who's experienced in working with adults with CP? They're hard to find, but essential.
    If anyone lives in Pennsylvania or around there, I go to a good one....I guess that doesn't really help if you live on the other side of the country, though

     
    Old 05-18-2005, 08:18 PM   #43
    krisk
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    Re: cp symptoms increasing with age

    Thanks for the info Nikki and NJenn. No, I haven't found a good orthopedic doctor who knows alot about c.p. I'm one of about twelve people with c.p. in my town. My balance is a little worse since the 3 toe straightenings.That's because I walked before with my toes curled under independently and now I can't walk without the walker even one step. I'm also alot afraid of falling, so I suppose it is better that I use the walker. I don't live near Penn. Iowa actually. My spasticity sometimes wins the battle also. Sorry it took me a couple days to respond. I just figured out how to do it. It's nice to be here with others who understand. krisk

     
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