Contributions
This is for information people have sent thru the form above or by email. I've done some minor editing: if you include an email, I'll check with you before i post it. I'll add my own commments in italics
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- Darumadar writes:
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I'm a 49- year-old lady with cerebral palsy who has recently developed a bad case of tendonitis in both wrists from years of using canes and forearm crutches. I have been taking 1,200 milligrams of Daypro for two months. It has helped some, but the pain still gets pretty bad at times. I'm going to see my physical therapist tomorrow about PT. for my wrists and I'm going to ask if I should change the types of crutches I use. I also have an appointment with an orthopedist about cortisone shots to reduce the inflammation so the Daypro will be more effective. I also wear carpal tunnel splints, especially when I use my crutches. I would like to know how others with cerebral palsy have dealt with this. I want to keep walking because if I don't, I could develop osteoporosis and increased muscle tightness as I get older.
I'm also wondering if I should consider having heel cord and adductor surgery. Will they improve my balance and put more weight on my legs, thereby lessening the weight I put on my arms and my crutches? I never had these surgeries done as a child because my family and I are from Hungary. They didn't believe in surgery there and I was taught to walk through conductive education at the Peto Institute in Budapest. My father didn't trust the surgeries because he was afraid they would do more damage. Based on a couple of the postings I read on your site, I think my father may have been very wise. I'm reluctant to have surgery because I don't want to put myself through that, but I will do anything to protect my hands and keep my ability to walk. I have taken Dantrium for 22 years and it has worked well for me. But I'm wondering if there are newer, better medications for controlling spasticity? I can put my heels down flat when I'm very relaxed and focused on that. But that is harder to do when I'm busy and in a hurry, and out in public. Does anyone have any suggestions? I have had physical therapy most of my life and I have also walked and exercised, especially in the past two years to try to combat the effects of aging and CP. I'm somewhat weaker now because I had a lot of sinus infections over the past year. I went back to PT. to increase my stamina last summer and fall, before I had sinus surgery. I have exercised by myself off and on, since the surgery and I plan to go back to PT. tomorrow, as I mentioned earlier.
I have lived independently in my own apartment for the past twelve years. Well actually, I live with a young, very active cat named Maxi. He helps me keep my sense of humor. I have two Masters degrees and I'm active in the community and my church. I have a part-time job working on a survey for the disability support services office of a major university in town. When I finish that, I want to find a full-time job. I also have elderly parents who will need my support. So, I have to keep myself in good shape.
Sincerely, Darumadar
- Bob writes:
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I have a long time friend with CP and he has hip displasia. Is it possible or feasible to do hip joint replacement to enable him to stand and be in less pain? Please advise if you know of a resource that I might contact to learn more about this possibility
Thanks, Looking for some Good News,
Robert D Lortz II
31 Stonebrook Dr.
Delaware, Ohio 43015
Bob's e-mail - Kim writes:
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need a place for adults with c.p. who are married and have no chidren as a result of both of or one having c.p.. The situation with us is that we both have mild c.p..
- Christie's Mom writes:
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I would like to talk to other parents of children or adults with CP. I have a lot of questions and would love to talk to someone with the same simalarities.
E-mail: Christie's mom's email
I assumed Chrisite was a typo
- Peta Yaxley writes:
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I'm writing this on behalf of my mother and sister who live in Western Australia but have little Internet access.
My sister Sandra Yaxley is 31 years old and is has athetoid cerebral palsy as well as spasticity in her limbs. Up until now she has been mobile. Sandy has always been an amazing person considering her disability, she is a gold medal paraolympian in swimming, winning at both Seoul and Barcelona. She has been awarded an OAM (Queens birthday honours) and her employers won an awards for Disabled People in the Work Place.
In recent months she has been having increasing muscle spasms resulting in her completely cramping up suffering from an upper motor imbalance. She is looking more like a severe CP rather than her usual mobile self.
She is complaining of getting tired quickly and is looking into getting a wheel chair. Sandy up until now has always been completely mobile.
There appears to be little research into the aging process of people with Cerebral Palsy as well as little research available generally for adults with this condition. She has been in hospital all weekend with really bad muscle cramping and spasm, whilst there is a neurologist looking into it, it appears that it really is a guessing game at this point. The solutions being offered appear to be, take more drugs (she's on Baclofan {not sure of spelling})which makes her groggy and unable to work/drive etc and appears to only benefit the pharmaceutical company. They wanted her to go onto Artane, but she began having side effects very early into it and on doing some research found it to be for people with Parkinson disease. There seems to be a lot of guessing and no tangible solution at this point.
If anyone can direct me to any contacts that may be able to help us it would be greatly appreciated. She is such a special person, the thought of her being drugged constantly or immobile is unbearable, her having been so active and so accomplished.
If you can help please do, I can find out exact facts and put you in touch with mum if need be.
Email Peta
- Valentina writes:
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Summary
This is survey study has been conducted to address the relationship between a number of variables in the presence of geomagnetic fields and the prevalence frequency of seizures cerebral palsy in different areas worldwide. It has shown that there is high correlation between frequency of seizures cerebral paralysis and geomagnetic field fluctuations, suggesting greater disease prevalence in places with higher geomagnetic field values. Because of this close dependence, the authors derived formulae that enable tentative forecasting frequency of seizures cerebral paralysis in regions with known geomagnetic values. Additionally, because of solar earth electromagnetic interaction, comparison was made between frequency of seizures cerebral paralysis and sunspot indices and indicated at the co-direction of relevant plotted curves implying an influence of solar activity, mediated by geomagnetic storms, on frequency of seizures cerebral palsy.
If anybody wants the full article in MS Word format mail to valentina
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JB wrote a long comment, but I think it was good, so it's on a separate page. You can send e-mail to JB
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saarah writes:
My daughter has been diagnosed with possible cerebal palsy or a condition called leighs disease. She is six years old and no one can tell us or help us with this condition.She falls most of the time and cannot walk unaided she cannot balance herself well. She had an mri brain scan done which showed up as leighs disease. please is there anybody out there that can help us.
we are from Cape Town, South Africa.
e-mail us at saarah's email
CP is a form of brain dysfunction. Leigh's disease is a genetic disorder (as far as I can tell with cursory reading). Try: Arthur's cp home for cp connexions in South Africa. For Leigh's disease Waisman center in Wisconsin has some good leads.
- Sherri writes:
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I am 27 years old with mild cp on my right side. I walk with a limp. I have been trying a new treatment that has had some success with children, it's called electro stimulation and bio-feedback. I attach electrodes to specific muscle groups and then perform exercises that utilize those muscles. I have added noticeable strength to my muscles. I have only experienced bio-feedback for about 5 minutes after the exercise.
- Bruce J. Connus writes:
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In 1993 I developed some pain in my right arm for the 1st time in 41 yrs. I have mild cp and I am a swm who is 47 yrs old. 7 yrs ago I searched for Dr's who were experts in dealing with CP. I called UCPA(local and state) and they laughed at the question and acted as is it was a stupid question. After about 6 months I located two DR's. I went to both of them. Both Dr's asked me questions for well over two hours each. Well needless to say, they did not have any answers to a very simple question. What happens to persons with CP as they age? After meeting with the two DR's i realized something. There are no answers. very rarely do we see persons with CP older then 50-55 years old. the reason? In my opinion, before the late 1940's early 1950's babies born premature or with some kind of inperfection would die. around 1950 the DR's started learning new procedures and saved lots of babies lives. and more babies with what is called CP lived. so now we are 45-55 years old and wondering h! ow our bodies will hold up as we enter our 60's and 70's soon.we are the 1st group with CP to reach the age of 45-55. so not even the DR's know whats going to happen. WE ARE THE PIONEERS. CP PIONEERS!! Again my personal opinion is that, it take us(cp'ers) so much effort to do things that it has to wear on our bodies. i live in Phila area, am executive director of a nonprofit housing organization, developing housing for the low income elderly, disabled and families. my email address: Bruce's e-mail Have a great day!!!
- Doss Park writes:
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I'm 68 and in great health. My doctor is concerned over my PSA of 13.3 and cancer. With no urinary irregularities, I'm inclined to believe a main contributor to the enlarged prostate is the stress caused by the cerebral palsy. Has any evidence been gathered on this?
3/6/00: a comment from the cp-dystonia list:
I would always be concerned about prostate cancer, that's why I don't mind bending over and spread 'em at my biannual physical exam.But I can't see there being any direct connection to cp. I'm 62 and have had no problems, yet. When I taught "Medical Aspects of Rehabilitation", our urology specialist always stated that if a man lived long enough, at some point he would develop cancer of the prostate! - Cliff writes:
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I am 43 and I have mild CP and I get around somewhat OK. I just had my left knee scoped this week and I am laid up at home for 2 weeks. I am concerned also about the effects of CP and aging in regard to my knees and over all general health.
- Susan Moore writes:
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I have a ? for the older woman who gone though the "change". How did it affect them? Did they go through it earlier? I am 41 1/2, have mixed cp. (quad) with ataxic being the dominant form. I work for the federal government as a computer programmer. I live with a roommate in my own condo, and have someone clean once a month. I go to the chiropractor about every 2 week and have a seated massage every week for 15 min. I have been taking Serzone for depression and FMS. Any help would be good.
- Patricia Williams writes:
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I am 31 years old and have had cerebral palsy since birth. I also have a mild case of epilepsy. I started having petit mal seizures just before turning 13. I was put on Tegretol. Everything was fine until I got into high school. I started having more frequent seizures. Well, that was brought under control with a higher dose of the medicine. After college, I did get a job at a telemarketing place in Spokane, WA.
My mother never let me get away with feeling sorry about my situation. I even met my husband 11 years ago. Neal and I became very good friends. We have been married for alnost 6 years and have a beautiful 5 year old daughter. She came out fine. No side effects from all the medicine I took while pregnant.
I now take Tegretol XR and have been seizure free for 2 years. I had a question about CP and aging because I seem to be developing a stiff back due to the muscles fighting each other because of the scoleosis. I due strtch as much as I can and see a chiropractor regularly to keep as mobile as possible. Do you have any information for me on the subject. I am concerned that I will not have all my faculties available as I age. Considering that I have epilepsy, due to the cerebral palsy, will that have a significant affect on me both mentally and physically?
My apologies Patricia, I clobbbered your email while editing...please send it again -- pierre
- Susan Buss writes:
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I have several reasons to be glad I linked to this site! As a geriatric Clinical Nurse Specialist, aging obviously has always been my area of study and expertise. Also, I have had mild-moderate spastic CP since birth with the "dire" prognoses from physicians since that day. Walked & talked at age 10---determined baby, I suppose. Became an RN by age 35 (away from doting parents and had two kids in gradeschool and realized I could so tackle nursing now!), completed grad school in '95 with approximately 30 GOOD years if I listened to my body and took spasticity meds. However, at age 50, I "suddenly" developed an episode of gait imbalance with falls for about 6 weeks; this cleared and returned about 18 months later, resolving once again. Two years ago this month I again "suddenly" developed gait imbalance which rapidly progressed to the need for a walker for safety and then other signs/symptoms never experienced before: extreme fatigue of the whole body, specific and generalized total body pain/deep aching, intermittent lapses in concenration and memory (almost lost my driver's license over that!), blurring of vision, plus B&B issues at times. After a year of testing and retesting, the likely diagnosis of MS was ruled out due to negative tests. So, my neurologist and I 'agreed to agree' on "Aging with CP." However, I still am not emotionally or mentally sure about his Dx. I need others with similar type CP to "describe" their own new/adult onset symptoms and problems. Thanks for this forum to give us all the opportunity to validate a disability which most people can't even begin to understand.
Copied from the guestbook
- CP writes:
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YES! My initials really are C.P. Charmaine Patricia.
I too have been trying to find further info regarding any 'nasty surprises' that I may encounter as I age. I am 50 next month, (I have mild CP with spastic hemiphlegia ) and have noticed that as the years roll on I am RAPIDLY becoming more unbalanced, no, not mentally folks, I'm pretty sharp in that department. (my friends say 'you think so huh?') Anyway I wanted to pass on an amusing conversation I had a with my chinease doctor whom I've known for twenty five years. I went to see him, not for any health problem but merely to sign a form I needed.
Dr. Tang asked me 'Are you experiencing any muscle spasms yet ?'
'Should I be?'
'Maybe not, you are quite stable condition'
' I sometimes wonder though, why I do not seem to see many people of my age group with CP?'
'Oh they all dead, die quite young with complications eh'
'. . . how young ?'
(here my doctor laughs) 'You OK, no spasms yet'
' Thanks,. . . what complications ?'
'Most die complications from pneumonia'So there you go guys. Thats the medical prognosis from, I hasten to add, a very learned surgeon. MY personal advice is to keep your sense of humour, and be able to laugh at yourself.
- LaVerta writes:
- I am a 41 year old mother of two.I would like to find an adult doctor with knowlege of cp and the effects of the aging process on the cp. Please e-mail us at email
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Last updated June 20, 2000
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