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The CP and Aging Bulletin Board actually went south ( = died for lack of activity)So, I will copy postings from othjer places to here at my own discretion, alwyas asking permission first, if an email is available.
As usual, I may add editorial asides in colored italics
My name is Catherine. I am a 32 year old woman who has Cerebral Palsy. I am interested in the positive attitudes of others with physical disabilities. I have completed university and am working part time and am back in college taking some work related courses. I am interested in hearing from other people with physical disabilities who are out there making their way. My reason for wanting to do this is that I have a friend who has CP and he is very angry and depressed about being in a wheelchair. He feels that he is a burden and has cut himself off from most of his friends. As much as I am hurt by this I feel I must keep my positive view and that this might that might help others. I have began writing about my experiences with Cerebral Palsy and the positive individuals with and without disabilities who have impacted my life. I could sure use some encouragement as this situation with my friend Ed has really shaken me up.
This brings me to the issue that I think has a truly negative impact on people with disabilities. People disabled or not tend to assume that we are desperate and needy. For example, my friend Ed (who I am worried about) will not accept communication from me at this time. It has been a month and a half since he changed his email and phone number. He had a really bad experience with another disabled girl and has decided that we are all walking wounded and needy. I do not believe this and I feel he is taking his stuff out on me. Because of these types of attitudes from both disabled and non disabled people I have found that I prefer being single because I find it difficult to meet men who are not scared by my disability. I have discovered that the negative projections people put on me in the name of "disability" usually means that this stuff is their problem more than mine, but it is a real turn off to be lumped in with desperate and needy disabled women and men who are out there in large numbers because they feel devalued unless they "have a PARTNER". Others negative and isolating attitudes about disabled will not change until we learn to find our value and strength from within. Only then can disabled people seek equality in society. To do this, however, these people must be strong enough to deal with being on their own so that they can find their voice and be sure that they are heard by others.
I do hope to meet both women and men who are positive and dealing with the challenges they face as disabled people. I am looking for positive stories to put together in an anthology to let others know they are not alone and that we disabled do have a voice! I hope you will share your stories and help others find their voice! Thanks for reading.
Catherine runs a writing web site for people with disabilities:
Disabled Writers Group.
I am a mild spastic diplegic CP person myself. I had my heelcords lengthened at 4 1/2 , my feet turned back out as a result of the heelcords lengthenings at the age of 8, then as an adult had to have a muscle lengthened on the outside of my ankles because I was ruining my shoes within days. (My worst record was 6 pairs of shoes in 3 weeks, a couple went in an hour). My right foot turns out because my ortho did NOT transfer a muscle in that foot during my second surgery, and the fourth surgery was to reroute a muscle in my foot so that it wouldn't turn out so drastically when I walk.
As a teen, they wanted to lengthen my hamstrings and adductor and to fuse my ankles. I REFUSED to go through any more surgery. I lost too much in terms of self-esteem, range of motion and flexibility in my feet as a result of my second surgery. I have been told as an adult by several orthos and a neuro that I am very lucky that I DIDN'T do the hamstrings and adductors and the fusion because they could have made me worse off than I am. If I ever do have to do the fusion because of a total ankle collapse, then it would only be a single or a double fusion at worst because one of the bones is already naturally fused.
Within the past couple of years, I had a really special ortho who just now retired. He told me that as an intern in the Marines, he was told that you DON'T do surgery on people with CP because of the domino effect that it has on the body (with the exception of hip dislocations and spinal curvatures).
Here's what he told me: First, you do the heelcords, fine, the person is flat-footed, GREAT. NOPE!!! Because the heelcords are now "artificially long" so the feet turn inwards and you've lost the ability to be able to go up on your tipee toes.. So you do the second surgery: to turn them back outwards. Fine. NOPE. The knees scissor. Fine, so
This was known at least 40 years ago!!!! So why haven't they stopped doing all of this? Because no one wants to admit the facts or
Do I look back at my experiences with surgery and alcohol nerve block injections as a "positive thing" that was done. NOPE!!!!! I was able to walk before I had all of this stuff done to me. I could have lived without all the pain and anger that I have, both physically and emotionally and the blame
for "walking the way" I do because of all of this. The other thing the ortho told me is that many doctors today are beginning to realize that they were too aggressive with us in doing surgery as young children. He also told me that bony derotations such as femur derotations and tibia derotations
DON'T work for "normal people" and even less for CP. It is mostly for appearances sake. I have heard too many complain of the pain and agony of the hardware that is put in during these procedures that cause problems later on. I know that many of the adults who went through similar stuff feel the same way
about growing up and going through surgery and stuff. I don't look back at PT and say that I got any major benefits out of it either. I could have lived without it too.
There is a site on the Net that talks about surgery for people with CP. They have found that the "best results" are with those that are "Spastic". Athethoids, and Ataxics don't do well with lengthenings and stuff.
I left out the link - the one posted wasn't correct
As for what I would do today instead of the surgeries, I'd put the kids on the horse, do biofeedback, Rolfing, TES, Feldenkrais,and etc. to avoid the need for all of this.
Sorry for the long post, but I do feel strongly about this, in case you hadn't noticed. Btw, did I mention how I hate the medical profession?LOL!!!
We have always been told that cp is a non-progressive disorder, but it seems it is not static, even if the damage on the brain does not change.
I felt confused when I in my forties began to notice that my balance, which has always been poor, began to fail me even more, and I felt a kind of weakness in muscles and joints I had not experienced earlier.
I didn't feel ill, so ther was no suspicion of any "virus infection" that doctors often turn to, when they fail to diagnose a similar illness.
At the age of 42 I suddenly without warning had a detachment of my right eye retina, due to progressive and extreme myopia. Also the retina of my left eye was found to be very thin, and I had two major surgeries that saved some vision. I probably had un undiagnosed, regressed ROP,premature retinopathy.
My balance and muscle weakness grew progressivly worse - to start with I used my youngest daughters old foldable pushchair as a support for walking, then a rollator, and for a few years I put more and more of my body weight on the rollator, until I much too late gave up and got a power 3-wheel scooter for outdoor use and a mid-wheel driven power chair with a seat lift for indoor use.
- What a relief! My mobility improved 120%, and I regained my usual strength and optimism.
I was even able to do the cleaning, cooking and laundry for my family without hired help, and I could reach high shelves in cupbords and closets. I had never been able to do this before ... :-)
Yes, there are individual late effects of cp, just like there is post-polio syndrome.
Eva
I think CP has made the quality of my life better, because I am basically free of prejudice,and have been forced come to grips with who I really am and what I wish to become. I think any disability really brings out character, because you strive to change the " bad" qualites about your life that you can....it makes you refine the inner beauty that you possess, because you may not be able to control how you appear outwardly.
However, by the same token, CP has also made me much more cynical,and yes...depressed more times then I wouild care to admit. I am barely affected by the CP, yet I still feel the strain of lonlieness, and the various taunts. Having mild CP, I am not always accepted into the "circle of the disabled" because I don't face all the same challanges they do, and I don't always fit into society because I walk a bit different. I'm too "normal" to be disabled, and too " disabled" too be normal...so then I just get frustrated and lonely, because it's like I'm on my own separate island....while the mainland goes about it's daily buisness. The thing that I really hate, is that people...even those with disabilites, make you feel like your sinning if you are not positive all the time about your disability, or you even attempt to use words such as " handicapped" or "disabled". I think we NEED to do more venting! I don't know about you, but I think it's worse when you have to supress what you're feeling for the sake of political correctness.
So yes, though I try to keep a positive outlook, I fall...,many times, into the role of comparison, and sometimes, depression. I wouldn't trade this body, though, I have learned so much from CP...I'd rather have the knowledge then a healthy body, ( most of the time :) becuase I believe for me personally, I would become rather shallow without it.
Vicki writes:
I posted the following to the PERINATAL ASPHYXIA post below... my 1st time to this web site. I am no expert on CP; I just have it! Vicki
PERINATAL ASPHYXIA
I have Cerebral Palsy caused by "difficult birth" (mother was in labor 72 hrs.) The long delivery caused some of my brain cells to die due to lack of oxygen. I have Athatoid(sp) type CP. My body is generally affected all over.
I attended a handicapped school for 1st grade and public school thru grad school. I work for State gov't. in social services, drive a 5 speed manual transmission Subaru stationwagon, raise, train & show Schipperke dogs in breed & obedience, have a rescued Greyhound from a racetrack that weighs 70 lbs (I weigh 103), work full time, LOVE to shop!!! I traveled to China & Tibet with my veterinarian in 1995 where I kept up with our tour members... even climbing to the top of the Potala.
My mom died of a brain tumor the month I started 9th grade; my dad died in a car wreck 2 yrs. later. My 2 younger brothers & I were taken in be a nice aunt and a mean-psycho uncle. I worked as a maid for $1/hr. in the college dorm to pay for college. Was married 5 yrs. to husband #1. I divorced him & have been married to #2 for 27 yrs. I am 54 yrs. old, have 30+ yrs. of State employment under my belt, live in Bill Gates' neighborhood... Two wks ago a very young cashier at our local grocery demanded to see my ID for a bottle of nice Merlot! So... in addition to being handicapped by CP, I guess I'm kindof a babe for my age.
My message... Too bad my mom never lived to see how active, capable, and independent I became. But I'm sharing this with you moms & dads out there to say... ya never know how FAR that little CP kid you have will go!!!
Editor: This is actually from the MGH Neurology Forum on CP, copied with the author's permission.
Michele writes:
My sentiments exactly.
responding to another post
I'm 20 yrs. older than you & during the past year I finally gave in to the increased level of continual pain by taking a new muscle relaxant, Zanaflex. I resisted all meds (except Anacin...up to as many as 10 a day) that long because when I tried any (Ultram, Valium, Baclofen) I just couldn't tolerate the side effects. I wanted my mind running on all 8 cylinders so I could function, keep working full time, etc. In June of 95 I went on Long Term Disability & haven't worked since then. Looked into having a Baclofen implant inserted (to relax muscles & avoid side effects from oral dosage) but to make a long story short, decided against the procedure. Now, even on the lowest Zanaflex dosage (4mgs. 3 x's/day) I'm still putting up with side effects that I hate. Mainly the lethargy & inability to concentrate or drive a car. When taking it I can fall asleep in mid sentence, or even while typing. But I could no longer function while dealing with the pain so..... I guess it's 6 of 1, a half dozen of the other.
I never had any Botox injections, but from what I've read about it I wouldn't want to & really don't know if parents should be getting them for their CP children. But that's their choice & I realize they're only trying to do what they think is best. When I was 21 a great orthopedic surgeon in Phila. operated on the adductor muscles in both my hip joint areas, completely cutting them apart so a new piece of muscle would grow in between & relieve some spasticity & pain. It helped a little at the time, but in about a year the new muscle had calcified, thus cancelling out the good effects. Now in mid life I think that operation may only worsened my gait, mobility, etc. I wish I hadn't gone through it but I didn't have a crystall ball at the time.
It upsets me greatly that there isn't more help for us adults but I do feel they should concentrate a little more on the children since procedures are more effective on their young bodies which can respond better to change & heal quicker. I just wish they would have tracked us as we aged so we could get more help and also so those kids with CP growing up after us could benefit from our experience. We could be a wealth of knowledge for the medical profession. They don't know what they're missing out on. On a more personal, selfish note I find myself extremely angry & deeply depressed 'cause most MD's don't have a clue as to what to do for us. (i.e. I found Zanaflex on the internet & brought it to my MD's attention) I'm livid because this is not the way they told me it should be as I got older. Every day I try to cope with the way the quality of my life has rapidly decreased to the point where I don't even recognize what used to be me, or my so called life & I don't let myself think abut the future. Anyway, that's my rather long, pessimistic 2 cents worth!
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