Connie/New PLS group member

[Guest guest]

Hi Connie,

Wow, 2 new members in one day! That's too bad about the reason for joining the

list, but wonderful that you've found us! This is a fantastic group! You'll

get lots of support, information, laughs & friendship.

Welcome!!!

Laurel

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@...

[Guest guest]

Hi Connie

I also joned this wonderful group recently. Its a hive of activity

here. I am still undiagnosed with my problem which began 9 years ago.

but recently I found a new neurologist that narrowed it down to

either HSP or PLS. I left work 5 years ago and in the last 2 years i

found myself not such getting bored but feeling lonely. I missed the

work atmosphere. I collect vintage Little Golden books and found that

you can sell them for good money on the internet thru the EBAY site.

I find this a very interesting hobby. I set them up on the ebay site

for sale, package them and then my husband takes them to the Post

Office. You can sell almost anything on ebay. Childrens and dolls

clothes sell well as do vintage books and toys. This is a great

little business that i can do from home. I recently began volunteer

work at my local charity store and not only find the people i work

with great but find it very rewarding. I also started art lessons. I

know that your problem is getting in and out of a car so that would

deter you from doing things out of the home. but can you get in and

out of a car if someone helps you? I am in australia and we have a

system here called Homecare and they are volunteers who will come to

your home and take you shopping etc. Do you have something similar in

the US? If you want to learn about selling on ebay, I would be more

than happy to help you out. Its easy and its fun and you can sell

just about anything!!

Maureen

Hi Connie,

> Wow, 2 new members in one day! That's too bad about the reason for

joining the list, but wonderful that you've found us! This is a

fantastic group! You'll get lots of support, information, laughs &

friendship.

> Welcome!!!

> Laurel

>

> 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@s...

>

>

>

>

>

>

>

>