TM website

Kim Sheets Schuette (kimschuette(AT)eurekanet.com)
Fri, 07 Aug 1998 18:28:49 -0400

Hello all!! Now I know I'm young but I think there needs to be soem
changes to our website!! I was thinking about this after I saw Dr.
Joanna Lynn (on our board of directors) this past week. Well, to my
suprise she said that she had only written the paper on TM because
someone had asked her and that she had never treated a person with TM
and knew little about it since she was an MS doctor. Now I knew that she
was a MS doctor but I was thinking that she had at least TREATED someone
with TM if she was on our board!! All she has is book smarts about TM!!
Well, needless to say I was disappointed and once again another doctor
asked me to have a "mental check up" just to make sure I wasn't doing
this to get attention!!!*sigh8
Well, on to the changes I think that needs to be done!!

1) There needs to be a list of doctors that know something about
TM!!(not book smarts!) Why not list the neruos. and doctors that have
diagnosed you!! They know something about TM apparentally since they
were able to help you!!

2) (This one is going to take some work fokes!!) There need to be a
listing of the state laws for car regulations for the disabled!! What is
each states laws.(ex. Ohio WILL cover the cost to get a car modified.
The disabled are NOT allowed to drive STANDARDS!!)
2a) This one is tricky but I think if we all put our writting skills
together(and I know you people can get your points across because we do
it everyday on the list!) we can get this acomplished! The Foundation
needs to be able to give money(at least some small amount) to people who
need it. Like people who's state will not cover the cost of all
modifications that may be needed for their car or people who can not
afford the cost of moblity devices.(ex. new comfortable wheelchairs,
scooters, sitting chairs with lifts, etc..)

3) We need to take to universities and hospitals and see if one of them
would start research on TM!! People we all know no one has a clue and
what we do know comes from spinal cord injuries or MS reaesrch but that
is NOT TM!! We need people to look into our illness DIRECTLY!!

OK people, I know what you are thinking," This child has taken too much
Neutroton!!! We would like to do this but money does NOT grow on
trees!!!" I know this( my parents remind me constantly!!:) but I think
we can get it done! Hey, if Rosie will give thousands of dollars to
cancer research, kids who have lost sll there cloths in a fire I think
we could persuade her to either give money or talk to someone about
giving money!! I think you know what I'm asking here, we all need to
write( and I mean write until they finally tell us to stop it) to all
talk show hosts, news programs(even local), See if there is some kind of
federal thing that would give us money to give others, etc..

I know this is big but I'm tired of this!! I'm tired of not being able
to do something to help me and others that have TM. I want to be able to
go to a doctor that has at least TREATED someone like me. I want to help
not only myself but ohters like me in the same situation.

I know it is not my choice to start anything. I know we can't do all of
what I would like but I think we could try at least some. Tell me what
you think.

Sayward