New PLS group member

[Guest guest]

Hello

My name is Connie. I recently joined the pls group.

I live in Coatesville, PA and had my symptoms for most of my life. I am

affected with severe spasticity in both my legs and use a wheelchair. I started

with a cane in the late 70's, in the 80's went to canadian crutches then finally

had to use a wheelchair because my spasticity had gotten so bad. I take baclofen

20mgs 3 times a day, with little to no results. My doctor recently suggested the

I consider the baclofen pump. I would like to hear from someone who has the

pump. The thought scares me.

I would also like to find some type of work that I could do from home. I have

looked online and didn't find anything that seemed to be worth looking into .

With my spacticity as bad as it is I have had to give up trying to find any job

out side of the home. It is very hard for me to get in and out of my car.

Financially I can't afford to purchase a van, I know that that would give me

greater independance.

Looking forward to hear from any one that can help.

Thanx

PLS

Dear Fellow PLSer,

I obtained your email address when you joined

PLS-Friends. (I am the founder and owner of

PLS-Friends.) Welcome to the group that no one wants

to join--but is happy to have done so when PLS rears

its ugly head.

PLS-Friends is a great group of people. If you have

questions, or need some support, please post a message

to the group. You'll get many useful, supportive

responses. Just send your email to

PLS-FRIENDS . Of course, if you just

want to lurk and read what others say, please do that.

If you need medical info about PLS, please let me

know. I can connect you to every worthwhile online

source of PLS info known to man (in English). I also

have copies of many PLS studies--many that I can send

by email. There's no need to give me your name--just

your email address.

I was diagnosed with PLS eight years ago, in 1996.

Currently my disorder only significantly affects my

legs and trunk. There are also minor, subtle changes

in my hands and arms. I have no speech difficulties.

I use forearm crutches inside and outside. I also

wear AFO's (custom made lower leg braces) all day long

to prevent foot drop and knee strain. I recently

obtained a power wheelchair that I will use for trips

to the mall, and for going to lacrosse and soccer

games with my two boys.

I left my career six years ago, and now volunteer for

the Spastic Paraplegia Foundation. (See our web site

at http://www.sp-foundation.org . All of the medical

info on the site has been reviewed and approved by our

medical advisor--Dr. Fink of the University of

Michigan Medical School.) Prior to the creation of

the Spastic Paraplegia Foundation we had no

organization pushing for a cure of PLS. Now we do.

I hope you enjoy PLS-Friends. If you have any

questions, please feel free to contact me.

Mark Weber

mark@...