Cerebral Palsy and Aging: Additions Vol V

I have a 14 year old son with severe CP spastic quadroplegia. Zach has never walked or talked and at this point, he doesn't even roll over. He has a feeding tube. He has very severe osteoporosis and pathological breaks happen all the time. I put him in a home because he got very heavy, awkward and fragile. It's the hardest thing I've ever done and I feel horribly guilty every day of my life. I miss him so much. He's always tested at 3-9 months. I don't know the depth of his understanding. He definately knows people close to him and responds. I worry that he won't live much longer. He always has some sort of infection. If someone has any insight, please share.

Those of us with CP who read these pages don't (hopefully) have to deal with problems like this one, but it IS an issue of CP and aging: at some point we may get past the place where our current support network is overwhelmed. - editor

If you are looking for information about Cerebral Palsy let me tell you something about it. I have CP. It is not a disease and you can't catch it from someone who has it. A lot of people think that because I have CP my mentality is affected. Let me tell you that this is wrong. My mentality is NOT AFFECTED. I am just as smart as any able-boddied person is. My fine and gross motor are affected as well as my speech. Because of this I walk slow and I use a walking stick when I'm out. I also type very slow and it's hard for people to understand me even when I talk clearly. Not everyone who has CP is mentally challenged. In fact, CP is a physical condition, NOT a mental condition. I can do most things able-boddied people can do but it takes me much longer to do them. In fact most people with CP are NOT MENTALLY CHALLENGED. I know this is different from the other posts here. Does anyone know if women with CP go through menopause early? I know someone already asked this but I wanted! to ask it too. If you wish to contact me my e-mail address is in this link

I am a little surprised at

In fact most people with CP are NOT MENTALLY CHALLENGED. I know this is different from the other posts here.

I think the majority of posts don't give that impression. - the editor

Please help me. I am a 19 year old female. It is not me that has the disease. It is my cousin. She was one of twins. She was the second born. Appearantly the doctor didn't act quickly enough. Gave my aunt a drug (experimental) to stop the labor. This resulted in a lack of oxygen and CP to Niki. I need some direction. She has a hard time making friens.She is22 years old. People recognize her gullability and take advantage of her. She has a boyfriend but he is Learning Disabled. I am thinking of trying to get her to sign a power of attorney form so that she can be able to live almost worry free and pay her bills. That is the only way. I am in Kansas so if anyone knows any support groups here please feel free to let me know. You can e mail me at my email

Lynn was diagnosed with CP when born, and went through several operations correcting problems in leg posture. Various consulants had decided changes were required.. These alterations were made to help when she was young.. After each change, Lynn was required to go see physiotheraphyspecialists to enable her to get back on feet. At the point where Lynn had got on her feet, no further operations, or physio were carried out.

During the intervening years, Lynn, now fairly mobile (without walker on short distances), went to school. Although, she got a bus to school, Lynn was able to walk for class to class, without any asistance.

Due to doubts about retaining balance outside the house, Lynn got walking frame. She received equipment when becoming more aware of mobility problems over longer distances. These difficulties appeared at 18/19 year of age. As the frame was used more and more over time, dependency became problem. Therefore, the walker was eventually used everywhere outside. Various emotional upsets, following these events, eventually 'forced' Lynn using walking frame inside house.

It is basically about my partner, Lynn Spink, who has what looks like spastic CP (is that the right phrase!!!!).The main problem is that she can walk inside ok, but when an attempt is made to go outside, she start to tighten up. She keeps feeling that a bad fall is going to happen. Basically, she seems to have low confidence when going outside. She gets all the usual thing happening, i.e joints tighting up, petrified she is going to fall,etc with CP.

She usually has walked with a frame, but can sometimes walk just holding my hand. Up to the age of 18, she was ok, walking everywhere without any aids. I think she just needs to relax, when she outside, and feels panic attacks coming on.Am I wrong??????????????? I, myself have no experience of CP before starting to go out with Lynn 3 Years ago. I have a brain injury, and sometime find it difficult to understand. She seems so close to actually walking by herself.

Any help, pointers, organisations or things(exercises), anyone could give us would be most gratefully received. This would enable Lynn to live life to the full, as far as she could.

MANY THANKS IN ADVANCE!!!!!!!!
MIKE S
p.s. We live Dundee, Scotland.

I can recommend tai chi as a help for balance issues. Given your description if you watch someone do tai chi on a video this may sound like impossib;le advice, but although I am not one of them there are people who do tai chi in wheel chairs or sitting in a regular chair. - editor

My name is Connie Bass. I have cp. I had a nervouse breakdown in September. At first my leg was fine, then I had to walk with a cane. Well, I ended in a wheelchair. They did a m.r.i found nothing. Now my skin goes numb at my at toes and fingers, it goes numb for a while some time then I get real cold then my skin feels like it is burning. Have you heard of this with people? I am 30 and wondering is it going get worse? You can contact me by e-mail.

I am a 50 year old Aussie with spastic CP, affecting my legs and right arm. Actually my back and left arm are affected too, but only very slightly.

I have always walked (with that scissors gait) with the aid of french crutches, and I use a wheelchair for long distances - and I drive. I used to consider myself pretty mobile, and full of energy.

After primary education at a special school I went to the local high school, then to university and graduated in law. I have managed to make a modest living, and I have been married for 25 years (no children as the result of a considered decision that I would not be able to cope).

After you leave school, you're on your own managing your disability unless you're in the thrall of one of the NGOs. That has always suited me fine. I always visited the local physiotherapist on and off to have occasional neck and back trouble treated, despite her initial protests that she was "not neurological", but never consulted any sort of specialist.

Three years ago, coincidental with the first signs of menopause and the onset of familial high blood pressure, I began to suffer from muscle weakness.

Was this normal? Something akin to post-polio syndrome? Was it induced by the beta blocker medication? Was it somehow hormonal?

At this point my trusty GP of 20 years fell ill and died of cancer. I consulted one of his partners.

Well, you've had a hard day treating people with HIV/AIDS and in rolls this menopausal woman with CP who asks if her muscle weakness is only to be expected. Well of course you agree with her, don't you? Obviously a hysterical female...

It got worse. Walking was getting really hard, and my right hand was now so weak I couldn't hold a knife properly. I began to doubt my sanity. So I consulted the practice's women's health specialist.

God bless her, she took me seriously and went looking for causes of muscle weakness. It turned out that I had a benign tumour of the hyperparathyroid gland. Calcium was being leached from my bones resulting in osteoporosis, and being dumped in my blood causing muscle weakness. (By a wonderful irony she was on holiday when the test results came in, and the first medico had to break the news to me!)

After surgery I just assumed that things would return to normal as they did when I fractured my leg 15 years ago. However, I am afraid that, probably because of my age, I have a permanent deficit in my muscle strength - probably only about 10%, but in those muscles that were quite weak to begin with, that's significant. I tire easily.

As a result I am now using the wheelchair a lot, even in the house (partly because I am fearful that if I fall I might break something because my bones are now brittle).

And I have started to get a bit of trouble with my knees, doubtless the inevitable result of unfair wear and tear. For this I find shark cartilege tablets helpful, by the way.

The moral of all this is LISTEN TO YOUR BODY. Don't just assume (or let anyone else assume) that problems you develop are the result of your CP. The health care system seems to be designed and run with the idea that only ablebodied people fall ill, and we are too ready to acquiesce!

I am a 42 year old woman who was diagnosed with CP three years ago. I was a preemie (1 lb. 11 oz.). From eight months of age I walked on my toes (incredibly high up). My parents questioned numerous doctors but all they ever said was that I would have strong legs. No one ever diagnosed CP. Three years ago I began having cramps in my legs, particularly my right leg, when I walked on inclines or too quickly. The pain and cramping would lead to flopping of my feet like a clown as I walked. I went to several physicians and was eventually diagnosed with CP. Imagine my surprise at 39!

I don't know what type I have but I know my leg reflexes are much more than they should be. Two years ago in Walt Disney World I had to use a wheelchair due to severe leg pain. Yesterday I ruptured my plantaris tendon just walking down the stairs. However, I questioned the neurologist when he diagnosed me and all he said was that my legs would tire more as I aged. Could the problems I have been having with pain with walking and now the ruptured plantaris be related to CP? Where do I go to find information about CP? I'm not very fluent on the Web and have not been able to find much information. Is there anything that can be done to prevent these cramps/spasms? in my legs and to prevent rupturing my tendon again? I really would appreciate any info you can provide or any direction in providing this information.

Email Linda

Hello, I am also 56 male and was only diagnosied with mild cererbral palsy 2 years ago. (they told me that the epilepsy was so strong that it hid it from detection. ) I had successful brain surgery for seizure control 11 years siezure free and drug free but I feel my self getting weaker in the arms and upper back as well as the upper legs . It seems to be getting more painful as I go on. I was told by doctors and nurses that the effects will just get worse. not to sure how to control it. Any Ideas? thank you very much for reading my story.
Sincerely Arnold Smith
Nainamo, British Colombia

Email Arnold

My name is Kathleen and I am seeking information about adult onset Cerebral Palsy. My 44 year old brother was just diagnosed with CP. The thing is, I didn't know there was adult onset CP. Pardon my ignorance, but is there? My beginning readings speak only of CP diagnosed in infancy and childhood.

I cannot recall my brother experiencing or displaying any ambulatory or movement difficulties during his childhood or youth. As an adult he discovered one leg is shorter than the other. Despite orthopedic and chiropractic treatment the condition is worsening. He has been informed he will probably need braces and additional equipment as he condition deteriorates.

I would greatly appreciate any information anyone has to share regarding adult onset CP. Including suggestions about confirming the diagnosis.

Thanks very much,Kathleen

Email Kathleen

I'm looking for information on [cp and aging] and no one seems to have knowledge. My uncle is turing 65 and has been deteriorating physically very much in the last year. The doctors say he has a pinched nerve, live with it. It is very difficult to see an otherwise "active" person who has done much while having CP, suddenly not be able to walk anymore. A complication is the onset of diabetes. He has lost sensation in his fingers and no finds eating difficult.
The main question is: does an older person with CP, who has been able to look after themselves and do physical activities (cut lawn, walk, climb stairs, eat o.k. on his own) suddenly deteriorate because of CP? or is there something else going on.
Please send information either my email or to

269 Upton Rd.
Sault Ste. Marie, Ontario
P6B 3E1

Thank you

Hello, my name is Sue, I am almost 39 years old and found out I have CP a couple days and will be having a MRI done week after next. I have always walked with a limp(or on my toes), but was told when I was younger that my tendons were too short, but now my balance is starting to get worse, and I am falling down a lot more, just wondering if there is anyone out there with any information or advice.

Sue: send me an email if you want direct feedback.

Cerebral Palsy and Aging
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Volume V: 12 November 2001 to 25 October 2002

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