Re: Digest Number 2578 Connie in Pa

[Guest guest]

Hi Connie,

Welcome to the group you have found a great group of people. It was so

funny when I was reading your post I could have written some of it, I was 7

yrs

old when diagnosed with HSP there is a family history my father and his

mother and her siblings. I started using a cane in 1979 and soon went to the

Canadian crutches and then to my wheelchair in 1993.

I started taking oral baclofen in 1980 and over the years increaded the

dosage and in 1997 quite by accident met a Dr who thought I was a good candidate

for the baclofen pump so we went through the process of trying zanaflex,

decreasing the baclofen increasing the zanaflex, etc, etc until in August 1998 I

had the test for the baclofen pump and had the pump implanted the next day.

I was in the hospital for the next 3 days and then discharged I stayed off of

work the following week and then went back to work so I was only out of work

for 2 weeks. I'm one of the fortunate ones who didn't have any problems

with the pump, started out with low dosage & gradually increased it. I have to

have a certain amount of spasticity in order to get in & out of my car and

put my wheelchair in the car, use the bathroom etc so we found it worked better

to do the increases gradually and fortunately I don't live to far from my Dr

so I was able to go in once a week for about the first 6 weeks and get the

dosage increased. I consider the pump a Godsend, I knew it wouldn't help me

start walking again so I didn't expect that so I wasn't disappointed, but it

has helped tremendously with the spasticity, I don't have to fight with my

legs so much anymore and even though it isn't supposed to it has helped with

the

clonus. Plus I don't have to take pills anymore and wonder how the

spasticity will be affected. I'm on my 2nd pump the battery went bad on my

pump in

Nov 2002 so I had to have my pump replaced in Dec 2002 and that was just an

overnight stay in the hospital but I did take 2 weeks off of work because I had

the vacation time available and it was the holidays.

I wouldn't be able to work or do a lot of the things I do if I didn't use a

wheelchair and the pump helps with the spasticity so that makes it easier to

work too. You might look on line for jobs you can do from home, I worked for

United Cerebral Palsy from home for 2 yrs before I got a job outside of home

and it was part time and I called people to adsk for donations of household

goods, it was a pretty easy job and I like it but didn't pay great. I went

tko work in Aug 97 in a call center where they did 411 for cell phones which is

a good easy job for someone in a wheelchair, that company closed Dec 31 last

year but they gave us 90 days notice so I had another jopb to go to on Jan 5

this year in another call center for a major cell phone company. I've been

hired for both jobs in my wheelchair, so I know some employers may

discriminate but these 2 companies haven't.

Good luck with your job search and decision about the pump, I am happy I

have the pump & it has worked great for me. I think some of the problems

people

have with the pump is the way the surgery was done and how the catheter was

put in. My surgery was done at Loma University Medical Center in

southern Ca and they have done lots of pump surgeries, so I think that has

helped.

Take care & welcome to the group I have to go get ready for work gotta work

today.

Donna HSP Ca