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
Just split into four pages. The index here covers all pages.. Here's a pointer to the latest comment.
An Index for all the pages:
- Tzvi Goldstein writes:
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I'm a 44 y/o male with spastic hemiplegia. I've found that the available literature and data on CP and aging to be sparse at best. I'll assume this is because either no research was done, the condition was misdiagnosed, or the medical establishement did not consider such research a priority. Be that as it may, my own experience has left me with a very low opinion of doctors and orthopedists in general, who just could not comprehend the significant social and emotional damage being physically handicapped can cause.
Putting aside the labels such as "last chosen Goldstein" and similar embarassments I've had to endure, I'm now a reasonably content adult with teenage kids who are sometimes just a tad overprotective of their father.
I work full time and engage in all the activities that I feel comfortable with including driving my own car (no hand controls--and believe it or not manual transmission).
My biggest handicap however is not my physical limitations, but rather the inability of society as a whole and unfortunately my parents and siblings to come to terms with my disability (mom refused to let me park my car with the "crippled licence plates" in the driveway of her house).
I should mention here that I'm an expatriate American living in Israel since '92.
Anyone wishing to contact me may do so at my email address
- Brenda writes:
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Hi. I have a 27 yr old sister who has cp. I think [it] is a milder case affecting her left side. She has not seen a doctor in years or one who specializes in cp cases. She does not have insurance, she's struggles with back, arm & leg pain she has had accupunture treatments but, it seemed to make the pain worse. She's never been happy or felt accepted in society. She wants to have a quality life and is limited because of cp. I've spent my whole life with her and still I don't know how I can help her accept herself for who she is living with this disability. please send me info and/resources about cp.
Anyone wishing to contact me may do so at my email address
- Sharon writes:
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hi I have a little girl with Cp,She is 3 today I am so worried about what to expect so if anyone can help please do.
Posted, but if you send me an email address Sharon you might get quicker response
--pierre - Dick Clark writes:
Like so many other baby-boomer CP's I've read about on aging with cerebral palsy,I'm beginning to feel the aches and pains of all those earlier years of 'weird walking' with a Canadian crutch as well as more than my share of thinking as I go down, "Oh no, I've fallen, and I'd BEST get up.It's midnight and darned if there's NOT a soul in sight."
I have had a very full and productive life finishing college in central Ill in 1972 and having a career in Social Work (Family Services) on Fla's west coast, then a job transfer to Raleigh, N.C. I retired with 25 years when the onset of osteoarthritis in my left hip and knee made mobilility much more of a problem.
The thing I like least about my present retirement is the onset of arthritis that together with moderate CP keeps me from TRULY enjoying things like waxing the car, working in the yard, etc.
My greatest acomplishment in life is our 26 year old daughter who is now complete with college attaining a master's and recently married to her true soul-mate. So despite the aggrivation and inconvenience of being an old-foggey,aging CP---LIFE IS GOOD!
- Jackie writes:
I have had some experience volunteering with children with CP at a camp and despite their developmental delay, they were very excited and happy to participate in "normal" activities. If anyone feels that there child is sad or alone and you stay home with that person all day, get them involved in something.
United Cerebral Palsy (the one in Cleveland) is where I volunteered at and the abilities of the children ranged but every child who was willing would swim, play on the computer and do arts and crafts and interact with other children. I believe that that experience helped me grow and have fun as much as the children.
- M. Dilda writes:
I am a 49 year old female. I was born with a cancerous tumor on my spine which left all the characteristics of cerebral palsy. I live in Fort Worth, TX area. I have yet to find a doctor who is willing to help me. I have been on crutches since the doctors started all the surgeries to lengthen tendons when I was younger.
I have alot of problems ever six months or so. I cannot walk at all without my crutches. Does anyone know of a doctor in my area that might be able to help? Also, my hands or should I say my thumbs and the muscle at the base of my thumbs goes numb now. The doctors don't like to give anything for pain but I cannot tolerate it like I used too. They just say it is going to get worse.
- Kim writes:
I'm 29 years old and have what I've been told is "mild" CP, as well as some scoliosis, which cause me to walk a little awkwardly/ off balance, most of my spasticity and "clonis" (that uncontrollable shaking) only occurring when I'm really nervous or cold. I've spent most of my life trying to ignore the fact that I have it, as have most of the people who know me-- I often catch people off-guard when I need to ask for the odd hand walking down stairs. I was told as a kid, that I might develop arthritis early due to the way I carry my weight and put pressure on my joints. Is this true? I am finding that every now and then, when the weather gets cold, I get a slight shooting pain sensation in my knees when I step down (I tend to land quite hard on my feet). I also find that I feel more physically awkward, and confused/ flustered/ can't concentrate, when too much activity is going on around me-- and I have trouble recognizing my space in relation to others', i.e. if I'm in their way or not. These things have always been issues for me, and as a kid they were joked about by my friends and family, and I never thought of them as real "problems"-- but as quirky personality traits. Now, as an adult I'm finding these problems to be happening more often, and to be presenting real barriers for me, both socially, and in the workforce-- and my anxiety about these issues makes them worse when they do happen. I have a very hard time explaining it to people, and am often made to feel like I'm making excuses. Are these common problems? I would like feedback from anyone else out there who may be experiencing similar problems. Also, I would like to know what the best information is out there for women with CP, i.e. reproductive issues/ concerns. Seeing as CP makes us age faster, do women experience an early onset of menopause? Is there an "unsafe" age for women with CP to conceive children that differs from women without it? Is there any new information out there about genetic links to CP? Thankyou for reading my long-winded letter!
P.S. What about osteoperosis and women with CP
Anyone wishing to contact me may do so at my email address
- Marcia writes:
My fiance'(Derek)has mild CP. He drives a car without any modifications and is mobile without any aid, however falls often. We can them "Gravity Bubbles".
Our biggest concern with our future is what to expect? Derek is 28 at the moment, and is already suffering from quite bad joint pains in his feet, knees, hips and back. We want to have a family, but probably won't for at least 8-10 years due to my age and our future career goals. Derek is worried about how active he can be with our children. He is great with children (nieces & nephews) and will oneday be a great dad.
Can any one enlighten us on what to expect about raising children whilst,as a parent, having CP?
Anyone wishing to contact me may do so at my email address
I think there are some cp parents around somewhere on the site. Also look in the Yahoo clubs..-pierre
- Angel writes:
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A truly inspirational and refreshing site. As a 28 y/o woman living with severe bi-lateral lower limb CP present from birth-I found it so comforting to accidentally discover this space. Currently, I'm writing my Masters of Public Health thesis at Medical School-and just wanted to tell others to live their dreams, and feel the spiritual forces in and outside of their lives making everything possible.
Kia-Ora
Angel
Christchurch, New Zealand - Cynthia writes:
I was born with cerebral palsy. I am 48 years old and teach children with learning disabilities. I have been teaching for 26 years. I am married to a wonderful guy named Ray. I have two wonderful children Detrick 21 and Kristi 19. my CP is mild and affects only my right side. I can do everything that any other person can do. It might take me a little longer to do things but eventually I will get them done. Also, I take care of my 87 year old mother who lives with me. Through God anything is possible.
- Christianne writes:
I am a nursing student looking for info. on Cerebal Palsy. My uncle is a 48 yr. old that has this and can't do anything for himself. He spends everyday in a wheelchair, but even though he is different he is filled with so much love. I just wanted a little info. on cerebal palsy and aging with this disease. please email me at email link
- Sharon writes:
I have a two year old son with mild CP and I basically don't know what to expect. He's my only child and I'm a single parent. I guess I'm just asking for advice from anyone on how to care for him without being overprotective. I may be wrong but I don't like for him to play with other kids too often that can walk because they tend to try to hurt him although unintentionally. Please e-mail be because I am really lost and I am not getting any support from his doctors. please email me at email link .
- Sheela writes:
I am Sheela from India. Last week I had very bad headache and cold.For 3 days I was suffering from heavy headache and cold. On 4th day soon after, I noticed that I can not control my lips to spit out. When I laughed, one side of the face seemed deformed and heavy.My right eye is watering all the time. One side of the face seems different. There is no pain anywhere and no problem wth speech.
Please advise me on my condition. What is the cause of my condition? Is it going to get worse with time? Will medication help remove it?How long will it last?I am 48 years old and having 2 children aged 14 and 11.I am healthy and this has not happened to me anytime for all these years.Please advise.Thanks a lot.
Please email me at email link
- April Townsel writes:
I am 32 and was just diagnosed with mild CP. Is this common? Has anyone else been diagnosed so late in life?
I got two submissions: one with just a name and one with just a comment. So I am assuming they are connected. If not, April: please let me know and anonymous tell me who you are.
To answer your question based on postings here it is fairly rare but has happened. Particularly if your symptoms are mild. - pierre- Kim writes:
My husband is 43 and I am 36. We both have c.p.. I have a degree in education and have served in a professional capacity with individuals with disabilities for 10+ yrs. Mark is also employed at a local factory where he has worked 18 yrs. He has had some trouble with muscle spasms in his back but I am the one really having mobility problems that I was not forwarned about growing up. I now use canes or a walker at all most all times due to recent and numerous falls. I would be so bewildered if I did not have internet access to learn that what I am experiencing is really the "norm". The medical commumnity is pretty clueless!! We are very rooted in our Christian faith and that makes all the diference in the world!
- Anne writes:
I am so glad to have found this site. At long last a "support group" for adults with CP. I am 32 and just this past year (starting in Oct 2000) underwent three reconstructive surgeries to correct spastic equinovarus in my right foot. For those possibly facing this surgery, I had a first metatarsal osteotomy, a heel slide, a complete anterior tibialis tendon transfer, Achilles/FHL/and posterior tibialis tendon lengthenings, and an arthroplasty to release my claw toes (complication). Prior to all this, as an infant I was not dx'd as having CP just neurological "delays" and a clubfoot. I was treated with casts and a DDB splint at night. For most of my life I compensated and was otherwise ignorant about why I was so clumsy, uncoordinated, and easily fatigued. Fast forward to age 29 when I ran the NYC Marathon, completing it with a torn ligament in my ankle. For two years, I searched for a doctor who would take me and my apparently more complex problems seriously. Finally found one in NY (Hospital for Special Surgery) that put me through a gait test where I learned of my many gait deviations (e.g., clonus in both ankles and LE's). From this NY doctor, I got a referral to a superb orthopedist in Boston and he told me, after all this time, that I have spastic CP. He's been wonderfully supportive of my husband and I through all of this. For the most part, I am coming along ok, though my contractures are quite noticeable now especially in my hips and heel cords. After alot of activity, my foot starts to turn back in. I am nervous now of what lay ahead. I do not have the same energy/endurance as I used to and, like most adults who posted to this forum, cannot find studies about the aging process and its effects on CP patients. I am open to being a study subject if that is what it takes to help propel the effort. Outside of the physical part, I earned a Master's degree in technical and professional writing and have worked in health care information systems most of my career. I also swim, bike, and do all sorts of non-impact activities. If I can be of further help to anyone, please let me know by email.
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Opinions expressed here are personal and do not reflect the views of PlanetcAD.
Last updated July 23, 2001
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