Re: One More Time!!!! PLEASE HELP! Letters to The American Autonomic Society

[Guest guest]

Don, I can't find your address to send this offline so I guess I will

have to do it this way.....might be too late...but I didn't get the

digest and didn't read your " last request " until this morning. I

don't get to do much for the group lately but I did take time to

TRY...

this note might not be what you are looking for so " no problem " if

you don't want to use it or can't but thought I try to do my part in

my way ......not fancy or formal.... " just me "

I would rather spend the time thank you because you have done more

DIRECTLY for us, or at least I have gotten more benefit personally

from what you have done....so " THANK YOU DON ! "

Hi, I'm Annette and my husband has MSA. He was diagnosed in

1995 when he was just showing Parkinsons like symptoms but was

progressing much too fast to be Parkinsons. We had to travel 200

miles to get a name for his condition: Stratonigral Degeneration. We

were told only that (1) " it's very rare " (translated don't expect the

medical profession to spend much time and money on this). We found

out that it was so rare that none of the doctors within our normal

traveling distance had even heard of it....(2) " We don't know the

cause " (translation: maybe you should worry not only about your

husband but your two sons and grandchildren). (3) " there is no

cure " .Translated...don't look to us for help.

It took a couple of years before I was helped to find the Shydrager

support group and was relieved to find that we weren't the only ones

in the United States facing this. My husband is now total

bedridden...can't move anything but two fingers and his eyelids

SOMETIMES . I have feed him a liquid diet for five years and

swallowing is so difficult that it takes six hours to get 48 to 52

ounces in a day so you can see that it is very difficult to do much

reading or anything else, BUT because of the support group and

friends that keep up on what is going on " in the rest of the world " I

know a little bit of what you are doing and I just want to say THANK

YOU.

ps> Since I had to do it this way >>>>>>>>>>>Hi to everyone.

and I are still around and still THANKING THE LORD for the blessings

that He gives everyday..... Love to all

-- In shydrager@y..., " Don Summers " <donsums@c...> wrote:

>

> This is your last chance to get your letters in so that I may carry

them to Hilton Head. Sylvia and I are leaving on Oct. 24th and I

must have time to put your letters on SDS stationary before we go!

> I now have 24 letters and would love to have a lot more. There are

lots of people out there ----- I need you to write me a short thank

you note so that I can show the physicians there that they are

APPRECIATED!

> Thanks and big HUGS to Y'all!

> Don Summers

>

> Hi Everyone,

> I'm resending this to make sure that I have your attention.

> I really need your help with this!

>

> At the Chicago meeting, I mentioned that I would like a number of

people in the

> Support Group to write letters to be delivered to the Physicians at

the AAS

> meeting this year at Hilton Head S.C. Sylvia and I will be

attending this meeting.

> Each year I have the opportunity to speak for a few minutes to the

physicians

> who are in attendance at that meeting. For the past several years

my main

> message to them has been to express our whole-hearted support for

their

> work and our deep appreciation for their dedication and diligence

in the

> research and treatment of patients with SDS/MSA.

> This year, I would likle to go a step farther by taking a packet

of letters from

> patients, caregivers and family members to the meeting.

> Would you all be willing to help me with this? If so, please

send me an

> e-mail with the subject " Letter to AAS " in the body of the

message, please type:

>

> Dr. Felicia Axelrod

> President, American Autonomic Society

>

> In your message, please join me in voicing our appreciation

> (in your own words of course) of their collective work.

>

> ( These are the people who are at the forefront in research,

medication testing,

> patient counseling, Clinical trials etc.)

>

> You may either use your full name or only your first name. Your

location,

> e-mail address or mailing address is not necessary.

>

> When I receive these messages, I will " copy " and " paste " the

contents

> onto a sheet of SDS/MSA letterhead and will present the packet to

> Dr. Axelrod when I speak to the doctors later this month.

>

> Please, lets encourage these people! Write and send your letter

today!

>

> Thank You!

> Don Summers

> Pres. SDS/MSA Support Group

>

>

>

>

>

>

[Guest guest]

Don, I can't find your address to send this offline so I guess I will

have to do it this way.....might be too late...but I didn't get the

digest and didn't read your " last request " until this morning. I

don't get to do much for the group lately but I did take time to

TRY...

this note might not be what you are looking for so " no problem " if

you don't want to use it or can't but thought I try to do my part in

my way ......not fancy or formal.... " just me "

I would rather spend the time thank you because you have done more

DIRECTLY for us, or at least I have gotten more benefit personally

from what you have done....so " THANK YOU DON ! "

Hi, I'm Annette and my husband has MSA. He was diagnosed in

1995 when he was just showing Parkinsons like symptoms but was

progressing much too fast to be Parkinsons. We had to travel 200

miles to get a name for his condition: Stratonigral Degeneration. We

were told only that (1) " it's very rare " (translated don't expect the

medical profession to spend much time and money on this). We found

out that it was so rare that none of the doctors within our normal

traveling distance had even heard of it....(2) " We don't know the

cause " (translation: maybe you should worry not only about your

husband but your two sons and grandchildren). (3) " there is no

cure " .Translated...don't look to us for help.

It took a couple of years before I was helped to find the Shydrager

support group and was relieved to find that we weren't the only ones

in the United States facing this. My husband is now total

bedridden...can't move anything but two fingers and his eyelids

SOMETIMES . I have feed him a liquid diet for five years and

swallowing is so difficult that it takes six hours to get 48 to 52

ounces in a day so you can see that it is very difficult to do much

reading or anything else, BUT because of the support group and

friends that keep up on what is going on " in the rest of the world " I

know a little bit of what you are doing and I just want to say THANK

YOU.

ps> Since I had to do it this way >>>>>>>>>>>Hi to everyone.

and I are still around and still THANKING THE LORD for the blessings

that He gives everyday..... Love to all

-- In shydrager@y..., " Don Summers " <donsums@c...> wrote:

>

> This is your last chance to get your letters in so that I may carry

them to Hilton Head. Sylvia and I are leaving on Oct. 24th and I

must have time to put your letters on SDS stationary before we go!

> I now have 24 letters and would love to have a lot more. There are

lots of people out there ----- I need you to write me a short thank

you note so that I can show the physicians there that they are

APPRECIATED!

> Thanks and big HUGS to Y'all!

> Don Summers

>

> Hi Everyone,

> I'm resending this to make sure that I have your attention.

> I really need your help with this!

>

> At the Chicago meeting, I mentioned that I would like a number of

people in the

> Support Group to write letters to be delivered to the Physicians at

the AAS

> meeting this year at Hilton Head S.C. Sylvia and I will be

attending this meeting.

> Each year I have the opportunity to speak for a few minutes to the

physicians

> who are in attendance at that meeting. For the past several years

my main

> message to them has been to express our whole-hearted support for

their

> work and our deep appreciation for their dedication and diligence

in the

> research and treatment of patients with SDS/MSA.

> This year, I would likle to go a step farther by taking a packet

of letters from

> patients, caregivers and family members to the meeting.

> Would you all be willing to help me with this? If so, please

send me an

> e-mail with the subject " Letter to AAS " in the body of the

message, please type:

>

> Dr. Felicia Axelrod

> President, American Autonomic Society

>

> In your message, please join me in voicing our appreciation

> (in your own words of course) of their collective work.

>

> ( These are the people who are at the forefront in research,

medication testing,

> patient counseling, Clinical trials etc.)

>

> You may either use your full name or only your first name. Your

location,

> e-mail address or mailing address is not necessary.

>

> When I receive these messages, I will " copy " and " paste " the

contents

> onto a sheet of SDS/MSA letterhead and will present the packet to

> Dr. Axelrod when I speak to the doctors later this month.

>

> Please, lets encourage these people! Write and send your letter

today!

>

> Thank You!

> Don Summers

> Pres. SDS/MSA Support Group

>

>

>

>

>

>