FAQ - Bulbar Palsy, Progressive
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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)

Progressive Supranuclear Palsy (PSP) advice?


Can it be brought on rapidly due to an operation ? My father was diagnosed three years ago with Parkinson's Plus (possibly MSA) but had a fall about 2 months ago, he broke his hip on the friday and was taken into hospital whereby he had a partial hip replacement the following day. Apart from the pain on the friday and saturday before the op he was ok. After the operation he was pretty much semi comatosed for a fortnight then slowly came around to being about 5% mentally of his former self. Starred fixed glaze eyes, hallucinations and problems moving his hands prompted him to be re-diagnosed as having PSP which I believe if this is the case he has little hope of recovery (to his former parkinsons self). Can anyone shed any light onto why the operation would accelerate the condition so rapidly and is there anything we can do for him.

Many thanks
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You asked a tough one and I don't know enough to provide the answer you deserve and I'm not sure who does.

I question the re-diagnosis although it could be correct. But because a major symptom of MSA is orthostatic hypotension, it is possible that the condition left him open to stroke. Although at first I thought he might have had a reaction to anesthesia, I know think it is possible that your father actually had some kind of stroke or TIA.
http://www.newswise.com/articles/view/545127/
http://findarticles.com/p/articles/mi_m0FSL/is_6_71/ai_64424153/

Although the risk is greater for a cardiac patient, there is a significant risk for someone with any form of hypotension.

Oddly enough sometimes beta blockers are prescribed after surgery. These would cause blood pressure to drop which could have increased his risk had this occurred. I doubt if it did because the doctors would have been aware of the MSA but it is a thought.

While it is true that the symptoms you describe can indeed by ascribed to PSP, there is certainly overlap with MSA, another parkinsonian-family disease. On the other hand it is quite possible that he was misdiagnosed from the onset.

An early symptom of PSP is difficulties with balance. Since that is also a major symptom of MSA there is a differential diagnosis issue. It also leads to falls in both conditions. And falls as you have already experienced can be life threatening.

The stare, however, while not always typical of early PSP where the visual symptoms are lack of focus, as the disease progresses the eyes dry and there is a lack of blinking.

One of the best descriptions of PSP is found at the National Institutes of Health. You would best know how to relate his prior condition to the descriptions found here:
http://www.ninds.nih.gov/disorders/psp/detail_psp.htm

Another possibility could be drug interaction but I have no idea what he was taking before the fall nor after.

You might be able to get more information from his medical-surgical team...maybe. Perhaps you should consult a different neurosurgeon who might think that you want to sue so probably won't talk to you but who knows. You are just looking for answers. This really isn't about fault - it is about understanding what happened and why and if anything can be done.

I also think there are better places than Y!A to ask this kind of question. You might try WeMove.org. Register so that you can join a discussion board. If you do that you will need more specific information. His symptoms before the fall, his medications. And after the fall: anesthesia, medications. What pain killer(s) is he being given?
http://www.wemove.org/psp/

There are also some online sites where you can ask a doctor a question. Please organize all of the information first. The problem is that this is big question so do not expect it to be answered but you may get some more clues.
http://www.doctorslounge.com/ask.htm
http://www.askthedoctor.com/index.php/topics-a-z.html

Some other questions which come to mind are does he have any other medical conditions? Does he have, for example, a prostate problem? Was he beginning to dehydrate before the fall? Sometimes it is difficult to tell but do your best to recall the signs of lower fluid intake which could have been going on for some time prior to the fall. Some of the symptoms you describe are also dehydration symptoms.

I am so sorry to hear about what happened. It must be heartbreaking for you and your family.  (+ 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?
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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?
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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?
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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!
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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?
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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.
3 STAY CONFIDENT IN ALL THAT YOU 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!
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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.
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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:
http://www.dynamic-living.com/article/car-accessories/

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)

What is Bells Palsy and how can it be treated and cured?


I just got word that one of my relatives has been diagnosed with Bells Palsy. I know very little about this condition? What are the syptoms? How can one get better? How can a doctor help? What are the long range challenges? Can one still have a quality of life? Is this cureable and if not how can this condition be managed.
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Bells Palsy is chacterized by lack of muscular control on one side of the face. it's caused by a malfunction of the facial nerve. Someone with bells palsy might have problems smiling completely, or it might look like one side of their face doesn't move. If you've ever seen batman, imagine "two-face". It's completely painless, and is sometimes more of just an annoyance than a real problem.

There's still a big debate about what causes it, but some studies indicate that EBV (the virus that causes mono), Herpes and Lyme disease might be a cause. Generally it tends to go away on it's own in a few weeks to a few months. There are not many treatments for this. I generally tell my patients to wait a month and see how it goes, unless it's severe and they have problems eating and such. Then i usually prescribe steroid medications.

It shouldn't affect the quality of someone. They might drool a bit at first, or have some problems eating, but they should get used to it very soon. As I said, symptoms generally disappear within a few weeks to a few months  (+ info)

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