Re: A few questions help needed

[Guest guest]

Do you have a local MDA office? I found my specialist through them. Maybe you

can give them a try if you haven't already. or you can move to cali...hehe

Terry Willoughby <tntw3@...> wrote:

Hello Everyone, I am Terry 33 Yr old Male with Type III I haven't

been on in awhile and i hope all of you are well. I was wondering if

you know of any specialist for SMA III. I also wonder if you know

were there is any good info on workouts that are suitable for SMA

III. I am tired of Neurologist that know less about SMA than I do

lol. I appreciate all input and take care.

Terry

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[Guest guest]

Hey Terry, how have you been? For the past few years I've had an excellent

nuerologist, Dr. Zachary at Hershey Med Center here in PA. He is the

first one I have ever had that I really trusted and liked. Unfortunately for

me, he is now specializing in ALS and my next appointment will be with a new

doctor. One thing Dr. did for me was to get me an evaluation with a

physical therapist. The guy didn't know anything about SMA but after a few

observation appointments he spent a couple months contacting specilaists and

doing research. I wish I could remember the names of the people he met but in

the end he said the same thing I have heard so many times before...that any type

of workout would just burn me out and do more harm than good. I tend to believe

that because these days it's all I can do to get to work every day then come

home and do a few little things around the house. By the end of the day I'm

exhausted. So I wish I had some better answers for you but th

at's all I got! Take care and take it easy,

Tom

-------------- Original message --------------

From: " Terry Willoughby " <tntw3@...>

Hello Everyone, I am Terry 33 Yr old Male with Type III I haven't

been on in awhile and i hope all of you are well. I was wondering if

you know of any specialist for SMA III. I also wonder if you know

were there is any good info on workouts that are suitable for SMA

III. I am tired of Neurologist that know less about SMA than I do

lol. I appreciate all input and take care.

Terry

[Guest guest]

Hi Terry:

My 6-year old son Bryce has Type 3 - and my 4 year old

daughter is tested positive for the homozygous

SMN1 deletion but is asymptomatic. Both Bryce and

is see Dr. Kissel at The Ohio State

University - specifically at the MDA Center on campus

- which is about a 2.5 to 3 hour drive for us. We also

see a local neurologist at the Cleveland Clinic.

We heard about Kissel early on after SMA entered our

lives. A small group of individuals with Type 3 came

up and had a meeting with Kissel and Dr. Arthur

Burghess (a SMA researcher - among other things, his

team created and propugated the first mouse-line with

SMA-like conditions and is involved with the NIH " SMA

Project " ). Anyway, I came across one of the

individuals on-line and they forwarded me their notes

taken from the two-part meeting - half with Kissel &

half with Burghess. I have the 4 or 5 page set of

type notes somewhere - and while it is slightly dated

now, if you're interested I will find it and post it

or send it to you as a scanned attachment. Per these

same individuals, Kissel was/is considered one of the

top doctors dealing with Type 3 specific issues - and

they all travel great lengths to see him (2 of these

people - and they're all adults - were from Texas,

another from Arizona, not sure about the rest).

Kissel, more predominantly than others of his peers,

has pushed and continues to push for more SMA drug

trials involving adults. Among other good reasons,

many of the toxicity issues faced in the drug trials

of infants and young children would be non-existent in

an adult trial of the same drug. At our first visit

to see Kissel in March, 2004 - we were fortunate to

meet another family - one from near NY city - with a

very nice boy aged 14 at the time(his name is Ben)also

with type 3. Per his parents, his neuro retired or

left the area - so they decided to start flying into

Columbus to see Kissel for Ben's appointments.

What I can personally say of Kissel - aside from the

fact that he is very good with our children and a very

nice person - is that he actually had answers for my

2-page set of questions - and the ones which had/have

no answers, he was straight up in saying " we don't

know. " Also - I know he sees folks with all types of

SMA and of all ages - if you're interested, I'll shoot

you his contact info.

Take care - Mitch

--- Terry Willoughby <tntw3@...> wrote:

> Hello Everyone, I am Terry 33 Yr old Male with Type

> III I haven't

> been on in awhile and i hope all of you are well. I

> was wondering if

> you know of any specialist for SMA III. I also

> wonder if you know

> were there is any good info on workouts that are

> suitable for SMA

> III. I am tired of Neurologist that know less about

> SMA than I do

> lol. I appreciate all input and take care.

>

> Terry

>

>

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[Guest guest]

HI TERRY,

I AM SORRY. I DON'T HAVE ANY INFO FOR YOU ON A TYPE 3 SPECIALIST. I DON'T

OFTEN SEE ENTRIES FROM ANYONE WITH TYPE 3 WHICH IS WHAT MY DIAGNOSIS IS ALSO. I

WAS WONDERING IF YOU WOULD MIND TELLING ME WHAT YOUR LIMITATIONS ARE WITH TYPE

3? MY DIAGNOSIS, AS MANY OTHERS, HAS ALWAYS BEEN UNCLEAR AND WITH MANY DOUBTS.

I APPRECIATE YOU SHARING ANY INFO WITH ME. THANKS IN ADVANCE.

PEACE TO YOU,

BETH CAROLLO

A few questions help needed

Hello Everyone, I am Terry 33 Yr old Male with Type III I haven't

been on in awhile and i hope all of you are well. I was wondering if

you know of any specialist for SMA III. I also wonder if you know

were there is any good info on workouts that are suitable for SMA

III. I am tired of Neurologist that know less about SMA than I do

lol. I appreciate all input and take care.

Terry