that last thread from HAWKEYE AND TRAPPERS BABY made me decide to talk about my own disability; a rare one called HEREDITARY SPASTIC PARAPALEGIA or H.S.P. as I'm sure a lot of people never heard of it, since it's just been recognized about 10 years ago-even some doctors have never heard of it. Our family doctor didn't until I told him recently, and another doctor I go to hadn't heard of it until I told her yesterday.

WHAT IS IT?-HEREDITARY SPASTIC PARAPALEGIA, also called familal spastic paraparesis (F.S.P.) refers to a group of inherited disorders that are charterized by progressive weakness and stiffness of the legs. Though the primary feature of H.S.P. is severe, progressive, lower extremity spasticity, in more complicated forms it can be accomponied by other neurological symptoms. These include optic neuropathy, retinopathy (diseases of the retina), dementia, ataxia (lack of muscle control), ichthyosis (a skin disorder resulting in dry, rough, scaly skin), mental retardation, peripheral neuropathy (whatever that is:lol: ), and deafness. Diagnosis is primarily by neuroligical examination and testing to exclude other disorders. Specialized genetic testing and diagnosis are avalible at some medical centers.

IS THERE ANY TREATMENT?-There are no specific treatments to prevent, slow, or reverse H.S.P. Symptomatic treatments used for other forms of chronic paraplegia are sometimes helpful. Regular physical therapy is important for improving muscle strength and preserving range of motion.

WHAT IS THE PROGNOSIS?-The prognosis for induviduals with H.S.P. varies. Some cases are seriously disabling while others are less disabling and are compatible with a full and productive life. The majoriy of induviduals with H.S.P. have a normal life expectancy.

WHAT RESEARCH IS BEING DONE?-The NINDS (no, I have NO IDEA what that is:) ) supports research on genetic disorders such as H.S.P. Genes that are responsible for several forms of H.S.P. have already been identified, and many more will likely be identified in the future. Understanding how these genes cause H.S.P. will lead to ways to prevent, treat, and cure H.S.P.



Feel free to also ask me any questions.


There's a web site where you can find more info-
www.sp-foundation.org

What kind of symptoms do you have?

trouble walking-I use a walker, a wheelchair, and a motorized scooter-, balance trouble, and trouble talking.

Dont let it win man, fight it! :cheer:

I'm so glad that I have inspired you sweetie! God Bless you for having to deal with this, just remember never to let it win! We have to fight! :bighug:

Thanks for the info. This makes me want to create a thread about my disability, but I'm not sure I should..

I'm so glad that I have inspired you sweetie! God Bless you for having to deal with this, just remember never to let it win! We have to fight! :bighug:
Thanx! It's a struggle; but I try not to let it win! (5 members of our family have it; but unfortunetaly; I'm the most severe)







(good MASH stories; B.T.W. Now will you PLEASE hurry and get some more chapters up?):lol: :lol: :lol:

Thanks for the info. This makes me want to create a thread about my disability, but I'm not sure I should..
Go for it SM, you have a built-in support system here, make use of it :)

Thanx! It's a struggle; but I try not to let it win! (5 members of our family have it; but unfortunetaly; I'm the most severe)







(good MASH stories; B.T.W. Now will you PLEASE hurry and get some more chapters up?):lol: :lol: :lol:

I'm workin on it Babe, I'm workin on it! ;)

:2bump decided to bump this thread up and tell people what's been going on with me lately with this.
I've started taking some P.T. (Physical Therapy), and, unfortunately, I'm starting to feel that it's getting a little bit worse in a couple areas (I mean my condition) but hopefulley this will help.

(and, unfortunetaly, it's starting to affect my muscles "down there"-but I'm seeing a uroligist, and he has me on medication, and it appears to be working) that last thread from HAWKEYE AND TRAPPERS BABY made me decide to talk about my own disability; a rare one called HEREDITARY SPASTIC PARAPALEGIA or H.S.P. as I'm sure a lot of people never heard of it, since it's just been recognized about 10 years ago-even some doctors have never heard of it. Our family doctor didn't until I told him recently, and another doctor I go to hadn't heard of it until I told her yesterday.

WHAT IS IT?-HEREDITARY SPASTIC PARAPALEGIA, also called familal spastic paraparesis (F.S.P.) refers to a group of inherited disorders that are charterized by progressive weakness and stiffness of the legs. Though the primary feature of H.S.P. is severe, progressive, lower extremity spasticity, in more complicated forms it can be accomponied by other neurological symptoms. These include optic neuropathy, retinopathy (diseases of the retina), dementia, ataxia (lack of muscle control), ichthyosis (a skin disorder resulting in dry, rough, scaly skin), mental retardation, peripheral neuropathy (whatever that is:lol: ), and deafness. Diagnosis is primarily by neuroligical examination and testing to exclude other disorders. Specialized genetic testing and diagnosis are avalible at some medical centers.

IS THERE ANY TREATMENT?-There are no specific treatments to prevent, slow, or reverse H.S.P. Symptomatic treatments used for other forms of chronic paraplegia are sometimes helpful. Regular physical therapy is important for improving muscle strength and preserving range of motion.

WHAT IS THE PROGNOSIS?-The prognosis for induviduals with H.S.P. varies. Some cases are seriously disabling while others are less disabling and are compatible with a full and productive life. The majoriy of induviduals with H.S.P. have a normal life expectancy.

WHAT RESEARCH IS BEING DONE?-The NINDS (no, I have NO IDEA what that is:) ) supports research on genetic disorders such as H.S.P. Genes that are responsible for several forms of H.S.P. have already been identified, and many more will likely be identified in the future. Understanding how these genes cause H.S.P. will lead to ways to prevent, treat, and cure H.S.P.



Feel free to also ask me any questions.


There's a web site where you can find more info-
www.sp-foundation.org

^ It takes a lot of courage to talk about something like this! Keep up the good fight and God bless you. :bighug:

Keep on rocking the free world, bud!!!

Wow - I never knew that about you Mike. Thanks for posting that.

I worked with a guy who has the same thing - the only other case I've ever heard of. What a coincidence.

He could walk, but very stiffy and slowly.

Are you in any pain with it at all? What do you do for physiotherapy (if anything)?


And as the others say - you hang in there and don't let it win! :)

first of all; my name's not Mike, it's Joe!:)

To answer your questions, I'm not in any sort of pain and hopefully I won't be for a LONG, LONG time. I just started taking physical therapy twice a week (since I don't drive, I have a van that picks me up). I'm on medication to help with my speech and movement, and so far it's working.:) :)