FAQ - Supranuclear Palsy, Progressive
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I am a young adult living with cerebral palsy. What can I expect to experience as I age?

I am only 21 years old and I am experiencing a progressive loss of strength and mobility. Because my case is mild, I will admit to have been denying my condition. However, this has prooved foolish. I am disapointed in myself for what things have turned into. I know that I can turn this around, but how?

Cerebral palsy is defined as a disorder of movement and posture due to a non-progressive lesion of the motor pathways in the developing brain. However, although it is non-progressive, the clinical manifestations evolve with cerebral maturation, thereby i think your recent pubertal growth spur had something to do with the increased symptoms. However cerebral palsy patients usually benefit greatly from team therapy involving physiotherapists, occupational therapists, speech therapists and phsycologists, apart from their regular doctors and specialists. Try to see your specialist as soon as possible, as these therapies might prove very useful to you and prevent severe complications especially muscle contractures and abnormal postures. In the worst cases, there is even the possibility of certain operations to remove painful contractures and facilitate movements.

I can understand your denial, but the best way to help yourself at the moment is to accept yourself just as you are. Good luck  (+ info)

ok charlie tuna whats progressive supra nuclear palsy ?? smart guy?

Am I allowed to answer??

**Progressive supranuclear palsy (PSP) is a rare brain disorder that causes serious and permanent problems with control of gait and balance  (+ info)

My dad has a degenerative brain disease. My mom works full time. Where do I start finding her govt assistance?

My dad is a military veteran and the disease he has is PSP (Progressive supranuclear palsy). They live in Mississippi. I just need to know where I should start in terms of how can I find her government assistance because she often has to leave him at home alone while she works which she doesn't want to do. Nursing home is an expensive route that she doesn't care to explore. Money is obviously an important variable in this equation. Thank you!

You could look to find adult day care services or Churches that offer services. When I was 16, I use to volunteer at an adult daycare provided by the Seventh Day Adventist Church. Also you can check with the local department of human services about long term care assistance.  (+ info)

Can a person with cerebral palsy start to walk on their own if they pratice alot?

i have cerebral palsy. i think that i can walk if i pratice alot. the other day i went to store and walk with my walker. now my legs are score and i cant pratice now. how can i make my legs less sore?

In my experience, the only way a person with CP will learn to walk is to learn how to do it with minimal effort. When you use the right muscles, walking should be almost effortless.

Think about it...babies experiment by using different muscles and bending their bodies in different positions until they find the simplest way. We don't consciously think about breathing, we just do it. Walking should be easy, too.

PT is the best way for a person with CP to learn how to do these effortless movements. My son couldn't sit up, crawl, or walk for a long time; much longer than the average child. After 3 years of PT, (age 3 1/2) he took his first steps. Now he's 5 1/2 and walking, running, jumping, climbing etc. We continue PT visits once weekly and he also practices at home.

If you force walking before your body and brain learn the correct "tools" to master the movements correctly, I think you will be putting unecessary strain on your muscles and cause more pain for yourself.

Make an appt. with a good PT that specializes in people with CP. They are out there, and they are VERY good at what they do. Good luck!  (+ info)

What are the challenges of cerebral palsy?

I am waiting to be a "Big Sister" in Big brothers, big sisters, and they have a possible match for me. She is a girl with cerebral palsy, and I don't know much about it. I have found info online, but it's very clinical and I just wanted some insight on the condition from real people.

Any thoughts? Anything I should know about?

Basically it is caused by damage to the part of the brain that handles your motor skills and muscle control. It really varies from person to person so its hard to say exactly what challenges someone would have though.

If her CP is more severe she might use a wheelchair or walker, and also it might be a little hard to understand her because the CP effects muscle control for talking too? Also a lot of people with cerebral palsy have this thing that makes their muscles really tense and they move involuntarily. I think thats what the other answer is talking about when she says her friend shakes. People will do stuff like shake or kick/move their arms or legs without trying, its just like signals from the brain so they can't control it?

My sister has pretty severe CP and her legs just kick a little bit back and forth constantly like 24 hrs a day. She uses a wheelchair only to get around (noo walking) and I think people who don't know her usually have a really hard time understanding her unless she talks really slow. She can't write or do much with her hands but she can drive her wheelchair and eat by herself. But also I have a friend with really mild CP and he just walks with sort of a stiff limp and has bad handwriting/fine motor skills, basically he's just a little bit klutzy/awkward when he moves. Like I said, it varies a lot? Maybe someone at Big Brothers Big Sisters could tell you a little more about her before you meet her?

Oh, also it is caused by brain damage but that doesn't always mean the person will have a mental disability too. Some people with CP will be mentally challenged and some will be average and some total geniuses.  (+ info)

How often is Bells Palsy a symptom of lyme disease? How accurate are blood tests for lyme disease?

My son was put on steroids after being diagnosed with bells palsy. Since he was bite by a deer tick 5 months before any symptoms I am worried he has lyme disease. The blood test was completed and came out negitive. Could the steroids have caused a false negitive?

aaargh!! DEB- FIRST, TAKE YOUR KID OFF ALL STEROIDS UNTIL LYME DISEASE IS RULED OUT BY A QUALIFIED [LYME-LITERATE] DOCTOR!! Why? Steroid use can lead to PERMANENT neurological damage if the disease IS present & allowed to get into places where it normally couldn't, due to the local immune-response suppression that steroids cause. {sigh} PLEASE take heed of this warning.
Now... Bells Palsy is not a "common" symptom but not rare either, though it occurs more in children, and especially when the bite is in the head/ neck area.
As far as the accuracy of Blood tests for Lyme, they are woefully inadequate & miss ABOUT 1/2 the actual cases of Lyme. (I hate having to repeat this over & over, but do some research. It's sadly true.)
Lyme disease remains a clinical diagnosis (see CDC & even IDSA guidelines). The typical ELISA test relies on the body's ability to generate sufficient antibodies to the Lyme spirochete PIECES to be detected by the test. Sometimes there aren't enough...for various reasons.
Finally, steroids can suppress immune response, but I haven't heard that they particularily interfere with the common blood tests for Lyme.
(Oh... and My neurological Lyme symptoms started 4 months after the tick bite. A very common period of time, as I understand.)  (+ info)

What are the chances of my child having cerebral palsy?

My fiancee has cerebral palsy and we want to have a baby but wanted to know what are the chances that our baby would have it. Cerebral palsy runs on his side of the family but not mine. His grandad and a few of his uncles have it but what are the chances that our child would have it? It seems as if the ppl on his side of the family that have it are male so is it more likely that if we have a boy would he have it. Please help! Please no smart remarks...thank you in advance!

I have Cerebral Palsy and it is not a disorder that runs in families. Your fiancee's family might just have it just because. It is simply a lack of oxygen that causes brain damage in the areas of the brain that control balance and fine and gross motor.  (+ info)

How do you deal with your limitations when you have Cerebral Palsy?

I have sometimes felt sad because I have Cerebral Palsy. Any tips on feeling better about it. And what about the anger that comes up too?

i'm an 18 yr old college student, i use a walker and have some difficulty with my left. honestly i doubt i could tell you how to deal with sadness or anger.What i will say is that sadness and anger is just a part of the human condition people are always anger or sad about something so even if you were perfect in everyway you'd still be sad or angry about something. the one thing thats gotten me through is humor and realizing that most people are incredibly ingnornate of people and things they have never had experience in or with (including myself).

ideas to overcome (corny)

1 stay objective in your thinking process- try and understand where people or the world in general is coming from.( its helped me)
2 i dont know your age but whatever it is set and hit goals that others think are impossible and force people to open their eyes to what you can do.

hope that helps some. remember you may feel lonely but you arent alone.

ps. i set a goal to walk by my 21st birthday and i been streching and working out 2-3 hours a day for months because i intend on hitting my goal i set for myself.
i also am going to learn 4 more languages in my lifetime.
im starting on Spanish next month
(it has helped my confidence in self worth just trying like i have been)  (+ info)

What are your tips on how to help babysit a child with cerebral palsy?

I am soon going to interview to nanny this summer for two children, one being a young boy with cerebral palsy. Does anyone have an experience babysitting or caring for any children with this condition? Do you have any tips for me or anything I should ask/discuss with the parents when I meet them? Thank you!

I've worked with children with development issues and I find that mostly during the interview the mother more or less talk about what is expected. These children usually have a very scheduled life, activities to stimulate their motor cortex, play time, and sometimes even medications or treatments that you might have to give during your shift Sometimes they also have special diets, specific ways of being fed depending on the severity of the disease or condition. walking can be very difficult, do they have a wheelchair, does this child transfer easily, will you be compensated if you injure your back or fall at their house, do they have insurance for you.
Just a few things to think about..  (+ info)

I have a mild case of cerebral palsy and need help with driving. What tools are out there to help me?

It's a mild case of cerebral palsy. Only thing the matter is that my right hand is limp, i cant grab anything with it. Hence I need to grab a steering wheel when i drive. I have heard about steering control knobs or balls. What else is out there that could help me? I suppose this would make me be able to get a handicap sticker on my license plate too.

Car manufacturers are one of the most enthusiastic industries as far as special needs adaptations.

You can indeed get a knob on the steering wheel, or a pin or a ring. You can also get floor-mounted steering, if your feet have more mobility than your hands.
You can also get the gear shift, and other normally right-sided controls moved to the left.

Even better, there are several resources, including the car makers themselves, that will fund, or help fund the modifications.

There are many helpful links here:

Or, if you have a specific brand of car in mind, talk to your local dealership.

You probably would qualify for a handicap parking sticker. But keep in mind that these are intended for people with mobility limitations. If you can walk without impairment, do you really need one?  (+ info)

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