H.S.P (Heritary Spastic Parapalegia) - Sitcoms Online Message Boards

treky · 02-14-2008, 02:25 AM

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

), 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

Max Whittaker · 02-14-2008, 03:22 AM

What kind of symptoms do you have?

treky · 02-14-2008, 04:18 AM

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

Mikado · 02-14-2008, 04:28 AM

Dont let it win man, fight it!

LuLu Rogers · 02-14-2008, 10:00 AM

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!

Sara Micelli · 02-14-2008, 03:22 PM

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

treky · 02-14-2008, 05:49 PM

Quote:

Originally Posted by TrapperandHawkeye'sBaby

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!

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?)

Mikado · 02-14-2008, 06:06 PM

Quote:

Originally Posted by Sara Micelli

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

LuLu Rogers · 02-14-2008, 07:54 PM

Quote:

Originally Posted by treky

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?)

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

treky · 12-14-2008, 04:52 PM

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)

Quote:

Originally Posted by treky

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

), 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

catlover79 · 12-14-2008, 04:57 PM

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

sunshinefizzy · 12-14-2008, 05:45 PM

Keep on rocking the free world, bud!!!

TripperFan · 12-14-2008, 05:51 PM

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!

treky · 12-16-2008, 02:14 AM

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.

02-14-2008, 02:25 AM	#1
treky star trek fan Eternal Member Forum Fanatic Join Date: Feb 25, 2002 Location: Conshohocken, pennsylvania Posts: 14,490	H.S.P (Heritary Spastic Parapalegia) 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 ), 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
	__________________ the Clampetts are in a fancy Beverly Hills jewelry store. Granny points to a tray of rubies. Granny: "How much fer one o' them red diamonds?" clerk: "Madam, those are rubies." Granny: "OK ask her kin we buy one offa her." clerk: " The ruby I am talking about is not a lady." Granny: "Lissen, how she got them diamonds is her business. I'm just sayin' ask her kin we buy one from her."

02-14-2008, 10:00 AM	#5
LuLu Rogers Colonel Brandon Forum Fanatic Join Date: Mar 23, 2004 Location: The Hogwarts Dungeons Posts: 11,013	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!
	__________________ -Lauren- "I can teach you how to bewitch the mind and ensnare the senses. I can tell you how to bottle fame, brew glory, and even put a stopper in death."-Professor Severus Snape

02-14-2008, 03:22 PM	#6
Sara Micelli Member Forum 3000 Club Member Join Date: Jun 14, 2002 Location: Texas Posts: 3,122	Thanks for the info. This makes me want to create a thread about my disability, but I'm not sure I should..
	__________________ Formerly popcornperson2002. Some people come into our lives and quickly go.Some stay for a while and leave footprints on our hearts. And we are never,ever the same-source unknown. "Suicide sometimes proceeds from cowardice, but not always; for cowardice sometimes prevents it; since as many live because they are afraid to die, as die because they are afraid to live" -Charles Caleb Colton

12-14-2008, 04:57 PM	#11
catlover79 God Bless Val Forum Addict Join Date: May 29, 2006 Location: Bewitched in Ohio Posts: 70,392	^ It takes a lot of courage to talk about something like this! Keep up the good fight and God bless you.
	__________________ "Jesus loves you and He approves this message." "I'm alive. I'm feeling good. I'm trying to live every moment as much as I can." - Valerie Harper, March 2013

12-14-2008, 05:51 PM	#13
TripperFan In God's Arms Now Forum Star Join Date: Sep 14, 2003 Location: Heartbreak Ridge Posts: 12,086	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!
	__________________ If I don't see you in this world, I'll meet you in the next one.....don't be late James Marshall Hendrix Voodoo Chile The Forum Legend formerly known as TripperFan "religion is for people who are afraid of hell--spirituality is for people who have been through hell"---anonymous

02-14-2008, 03:22 AM	#2
Max Whittaker I want Serenity back Forum Veteran Join Date: Apr 30, 2001 Posts: 6,180	What kind of symptoms do you have?

02-14-2008, 04:18 AM	#3
treky star trek fan Eternal Member Forum Fanatic Join Date: Feb 25, 2002 Location: Conshohocken, pennsylvania Posts: 14,490	trouble walking-I use a walker, a wheelchair, and a motorized scooter-, balance trouble, and trouble talking.

02-14-2008, 04:28 AM	#4
Mikado Main st bridge Forum Superstar Join Date: Jul 06, 2005 Posts: 25,892	Dont let it win man, fight it!

12-14-2008, 05:45 PM	#12
sunshinefizzy Member Senior Member Join Date: Sep 27, 2006 Location: Craptown Posts: 2,054	Keep on rocking the free world, bud!!!

12-16-2008, 02:14 AM	#14
treky star trek fan Eternal Member Forum Fanatic Join Date: Feb 25, 2002 Location: Conshohocken, pennsylvania Posts: 14,490	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.