PLEASE HELP! Letters to The American Autonomic Society

[Guest guest]

--

Hi Don,

Thanks for the reply with the info on the meeting. I think 's

Dr's would be attending. When he was in the hosp. I printed off info

for the nurses to put in the chart. The Dr's told me they read the

info too. So I will make sure they know about the meetings. None

of them have said anything to us about it. I am a RN so I might be

able to get something from the presentations. Depends on how

is doing if he would want to sit through something that was to long.

Where is it going to be? We go back to the Internist Mon. and also

our Lung and Critical Doc, and our Neuro man. Will encourage them

to attend.

Anyway, yes we still live here and just sold our beach house and

moved into the new one we have been building the past two years. We

will look forward very much to meeting you and Sylvia and would like

to have you have dinner at our home while you are here. Where will

you be staying while you are here and wondering if you will stay on

a few extra days, that would be great. Hilton Head is a beautiful

Island. Keep in mind we have a great private guest room that we can

offer you if you want to stay on a few extra days, just keep it in

mind.

Our phone number here is . Our new home is just over the

bridge from Hilton Head now. We look over onto Hilton Head from our

back decks, and the Intercoastal waterway...so very peaceful place to

be. Let us know when you will be arriving here.

Will make sure we get our email of appreciation to you too.

Our new address is: 80 Pointe South Trace

Bluffton, S.C. 29910

Looking forward to meeting you both.

and Hanson

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

> Hi ,

> Thanks for the note! The meeting in Hilton Head is from Oct. 24-

27th.

> Sylvia and I will attend on behalf of the

> Support Group. They allow us to have a booth there with our

brochures etc.

> The meetings are composed of serious physician and researcher

presentations.

> I think that two or three of the presentations this year are

directed

> towards

> MSA. I don't know how helpful it would be for you and to

attend or

> whether you would enjoy it at all. The medical terms used by the

doctors in

> presentations to other doctors is generally so far over my head

that I am

> very quickly lost. This is a meeting of doctors speaking to

doctors and I

> find myself being pretty much on the sidelines!

> The main reason for us being there is to meet the doctors outside

of the

> conference and continue to make each of them aware of the Support

Group,

> express to them how much they are appreciated and remind them to

refer

> patients and family members who are dealing with SDS/MSA to our

Support

> Group. We carry brochures with us, give them to the attendees and

ask for

> permission to send a supply of them to their offices where they can

be

> displayed.

> Do you still live there in Hilton Head? Maybe we could get

together and

> have dinner or something. Please stay in touch.

> I'd love to get together with y'all while we're there.

> Best regards to you both,

> Don Summers

>

>

>

>

> Re: PLEASE HELP! Letters to The American Autonomic

Society

>

>

> > --

> > Hi Don.

> > and I will try to put together something. He has only been

> > home from the hosp. a week now, and starting to make some gains

> > on the loss of strength.

> >

> > When is the AAS meeting here in Hilton Head? Is it something we

> > could attend? Hilton Head is where we have lived since 1995 and

if

> > you have never been here your in for a pleasant time. It is a

> > beautiful Island. It will nice to get a chance to meet you while

you

> > are here. Let me know more about the AAS meeting. I will encourage

> > all our Docs to attend.

> >

> > and Hanson (Hilton Head Is.)

> >

> >

> >

> >

> >

> >

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

> > >

> > > 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

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

--

Hi Don,

Thanks for the reply with the info on the meeting. I think 's

Dr's would be attending. When he was in the hosp. I printed off info

for the nurses to put in the chart. The Dr's told me they read the

info too. So I will make sure they know about the meetings. None

of them have said anything to us about it. I am a RN so I might be

able to get something from the presentations. Depends on how

is doing if he would want to sit through something that was to long.

Where is it going to be? We go back to the Internist Mon. and also

our Lung and Critical Doc, and our Neuro man. Will encourage them

to attend.

Anyway, yes we still live here and just sold our beach house and

moved into the new one we have been building the past two years. We

will look forward very much to meeting you and Sylvia and would like

to have you have dinner at our home while you are here. Where will

you be staying while you are here and wondering if you will stay on

a few extra days, that would be great. Hilton Head is a beautiful

Island. Keep in mind we have a great private guest room that we can

offer you if you want to stay on a few extra days, just keep it in

mind.

Our phone number here is . Our new home is just over the

bridge from Hilton Head now. We look over onto Hilton Head from our

back decks, and the Intercoastal waterway...so very peaceful place to

be. Let us know when you will be arriving here.

Will make sure we get our email of appreciation to you too.

Our new address is: 80 Pointe South Trace

Bluffton, S.C. 29910

Looking forward to meeting you both.

and Hanson

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

> Hi ,

> Thanks for the note! The meeting in Hilton Head is from Oct. 24-

27th.

> Sylvia and I will attend on behalf of the

> Support Group. They allow us to have a booth there with our

brochures etc.

> The meetings are composed of serious physician and researcher

presentations.

> I think that two or three of the presentations this year are

directed

> towards

> MSA. I don't know how helpful it would be for you and to

attend or

> whether you would enjoy it at all. The medical terms used by the

doctors in

> presentations to other doctors is generally so far over my head

that I am

> very quickly lost. This is a meeting of doctors speaking to

doctors and I

> find myself being pretty much on the sidelines!

> The main reason for us being there is to meet the doctors outside

of the

> conference and continue to make each of them aware of the Support

Group,

> express to them how much they are appreciated and remind them to

refer

> patients and family members who are dealing with SDS/MSA to our

Support

> Group. We carry brochures with us, give them to the attendees and

ask for

> permission to send a supply of them to their offices where they can

be

> displayed.

> Do you still live there in Hilton Head? Maybe we could get

together and

> have dinner or something. Please stay in touch.

> I'd love to get together with y'all while we're there.

> Best regards to you both,

> Don Summers

>

>

>

>

> Re: PLEASE HELP! Letters to The American Autonomic

Society

>

>

> > --

> > Hi Don.

> > and I will try to put together something. He has only been

> > home from the hosp. a week now, and starting to make some gains

> > on the loss of strength.

> >

> > When is the AAS meeting here in Hilton Head? Is it something we

> > could attend? Hilton Head is where we have lived since 1995 and

if

> > you have never been here your in for a pleasant time. It is a

> > beautiful Island. It will nice to get a chance to meet you while

you

> > are here. Let me know more about the AAS meeting. I will encourage

> > all our Docs to attend.

> >

> > and Hanson (Hilton Head Is.)

> >

> >

> >

> >

> >

> >

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

> > >

> > > 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

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

Hi again everyone,

Time is running out! I have a total of five letters to carry with me to the American Autonomic Society meeting. I know that there are more of you than that out there who can send me a letter thanking these physicians for there help! Please do it today ---- right now is a great time! I will be totally embarassed to carry less than a hundred letters.

I'm looking forward to hearing from a BUNCH of you this weekend!

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]

Hi again everyone,

Time is running out! I have a total of five letters to carry with me to the American Autonomic Society meeting. I know that there are more of you than that out there who can send me a letter thanking these physicians for there help! Please do it today ---- right now is a great time! I will be totally embarassed to carry less than a hundred letters.

I'm looking forward to hearing from a BUNCH of you this weekend!

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]

Dear Physicians:

I was a care giver for my husband for 7 years. He died of

Shy-Drager/MSA April 25th of this year. We feel he started with the

disorder in 1992 but it took until 1995 to figure out what it probably

was. We did go to University of Vanderbilt in January 1996 and had it

confirmed. Then in October off that year we went to the Montreal

convention of doctors and patients and learned so much that helped us

cope with this disorder. Our Neurologist, who was a wonderful open

caring person, said because of our use of the internet and being part of

the list serve, plus the information we received at the conference we

were able to help him learn things that had not even come out in the

medical journals yet. He read all that he could to help us as much as

possible. Dr. Hubert Leonard was very encouraging to us to live as much

as we could with the difficulties at hand. We both really appreciated

him. While Jack was in the wheel chair the past few years and used a

scooter for 6 for distance we flew to Hawaii for two weeks, went to San

Diego, Canada, the Oregon Coast, went to movies, the live theater,

friends homes etc. We bought a portable ramp to help us get into places

that would be in accessible without. Much of what we did was also

possible because of what we learned from others on the list serve.

Accessibility, and equipment, Physical therapy to help with keeping the

strength up all had been discussed with helpful hints from the list

serve.

I thank you for all of your sharing of what you have learned over the

years with patients and research with each other. By this perhaps in

the near future there will be more help for those afflicted with this

disorder. Please encourage your patients to join in a support group.

If they have a computer, encourage them to join the list serve so they

can cope with the limitations as best as possible.

Sincerely,

Judy Mears

[Guest guest]

Dear Physicians:

I was a care giver for my husband for 7 years. He died of

Shy-Drager/MSA April 25th of this year. We feel he started with the

disorder in 1992 but it took until 1995 to figure out what it probably

was. We did go to University of Vanderbilt in January 1996 and had it

confirmed. Then in October off that year we went to the Montreal

convention of doctors and patients and learned so much that helped us

cope with this disorder. Our Neurologist, who was a wonderful open

caring person, said because of our use of the internet and being part of

the list serve, plus the information we received at the conference we

were able to help him learn things that had not even come out in the

medical journals yet. He read all that he could to help us as much as

possible. Dr. Hubert Leonard was very encouraging to us to live as much

as we could with the difficulties at hand. We both really appreciated

him. While Jack was in the wheel chair the past few years and used a

scooter for 6 for distance we flew to Hawaii for two weeks, went to San

Diego, Canada, the Oregon Coast, went to movies, the live theater,

friends homes etc. We bought a portable ramp to help us get into places

that would be in accessible without. Much of what we did was also

possible because of what we learned from others on the list serve.

Accessibility, and equipment, Physical therapy to help with keeping the

strength up all had been discussed with helpful hints from the list

serve.

I thank you for all of your sharing of what you have learned over the

years with patients and research with each other. By this perhaps in

the near future there will be more help for those afflicted with this

disorder. Please encourage your patients to join in a support group.

If they have a computer, encourage them to join the list serve so they

can cope with the limitations as best as possible.

Sincerely,

Judy Mears

[Guest guest]

Oh know, I did not mean to have that go to everyone. Sorry. Judy

>

>

>

>

>

[Guest guest]

Oh know, I did not mean to have that go to everyone. Sorry. Judy

>

>

>

>

>

[Guest guest]

October 20 2002

Dr. Felicia Axelrod

President American Autonomic Society,

My father was diagnosed with MSA in May 2000, he is now 79

and has gone from being a very independant and active person

to being physically incapacitated and totally dependant.

I want to thank you for the research that you and your

assosciates are doing to further the understanding of this

disease. I am so grateful for this Internet group because it has

given me support and information that I could not get elsewhere.

I find that most doctors I speak to have never heard of MSA , my

father was diagnosed because of an observant dental assistant,

the Internet and Dr., a mouvement specialit at The

Neurological Institute in Montreal.

There are so many questions about this disease and my father's

caretakers are doing the best they can. The more is known about

MSA, the better care the patients will receive. So I thank you once

again for your efforts and I pray that you continue to receive

support for your research.

Joanne Arsenault

[Guest guest]

October 20 2002

Dr. Felicia Axelrod

President American Autonomic Society,

My father was diagnosed with MSA in May 2000, he is now 79

and has gone from being a very independant and active person

to being physically incapacitated and totally dependant.

I want to thank you for the research that you and your

assosciates are doing to further the understanding of this

disease. I am so grateful for this Internet group because it has

given me support and information that I could not get elsewhere.

I find that most doctors I speak to have never heard of MSA , my

father was diagnosed because of an observant dental assistant,

the Internet and Dr., a mouvement specialit at The

Neurological Institute in Montreal.

There are so many questions about this disease and my father's

caretakers are doing the best they can. The more is known about

MSA, the better care the patients will receive. So I thank you once

again for your efforts and I pray that you continue to receive

support for your research.

Joanne Arsenault

[Guest guest]

October 20, 2002

Dr. Felicia Axelrod

President American Autonomic Society

Greetings Dr. Axelrod,

I am at the fairly early stages of possible MSA. Three years ago, I started

to encouter balance and coordination problems. Numerous and detailed tests

revealed cerebellar degeneration. While not such a big deal, facing Long

Term Disability at the age of 43 was unexpected. Though bad enough, the

gradual introduction of autonomic problems raises additional worries. But

do not remember my story. Remember, instead, the story of my wife, our two

teenage children and our friends as they watch this ongoing struggle.

The research and efforts of this Society do and will make a difference.

Yes, the patients will benefit. But the family and friends that stand

behind them represents a more important challenge. Making a difference in

their lives matters most. Death is inevitable. Most patients are graced

with enough time to adjust to it. But families and friends suffer greater

pain. They feel both helpless and hopeless as they watch loved ones

struggle with the symptoms of MSA.

Yes, the efforts of the American Autonomic Society matter. They matter for

every spouse, child and friend that stands behind everyone of the MSA

patients. Your work matters.

Sincerely,

B. Fisher

[Guest guest]

October 20, 2002

Dr. Felicia Axelrod

President American Autonomic Society

Greetings Dr. Axelrod,

I am at the fairly early stages of possible MSA. Three years ago, I started

to encouter balance and coordination problems. Numerous and detailed tests

revealed cerebellar degeneration. While not such a big deal, facing Long

Term Disability at the age of 43 was unexpected. Though bad enough, the

gradual introduction of autonomic problems raises additional worries. But

do not remember my story. Remember, instead, the story of my wife, our two

teenage children and our friends as they watch this ongoing struggle.

The research and efforts of this Society do and will make a difference.

Yes, the patients will benefit. But the family and friends that stand

behind them represents a more important challenge. Making a difference in

their lives matters most. Death is inevitable. Most patients are graced

with enough time to adjust to it. But families and friends suffer greater

pain. They feel both helpless and hopeless as they watch loved ones

struggle with the symptoms of MSA.

Yes, the efforts of the American Autonomic Society matter. They matter for

every spouse, child and friend that stands behind everyone of the MSA

patients. Your work matters.

Sincerely,

B. Fisher

[Guest guest]

:

Dr. Felicia Axelrod

President, American Autonomic Society,

Thank you and the other member of the American Autonomic Society for all the

time that you have and cont. to put into the SDS/MSA work.

I am a 46 female and have 3 children 20, 17, and 14 years of age. My husband

is my backbone that has helped so much .

We would have had a more difficult time dealing with MSA if it had not been

for the information that you have been able to provide.

I was a R.N. than I got to the point that I was not able to work anymore. It

would have been too dangerous for the patients. My life at home has also

changed. To get house work done and cooking and all the good stuff that

other mothers do has become, well I'll put this way I'm not a supper mom

anymore. Doing this letter is a big job for me. My eyes and brains are not

what they use to be.

My family has come to the realization that life is not like or will be as it

was before. They see me use my cane, or walker or they push me in my

wheelchair they try to put on a smile. It was and still is a adjustment.

They know that even the daily tasks of bowl and bladder relief is not

normal. Not to mention the noises I make when I sleep. We all pull together

and make the best of what we have. We have each other.

If it were not for the knowledge and hard work that goes on, and getting

the information out, there would be little hope or no hope for MSA/SDS

patients or there caregivers. In a way you are our caregivers.

Thank-you for caring,

Liz Yanni

P.S.

Thanks to Don and Pam for all your work. Hats off to you!

[Guest guest]

:

Dr. Felicia Axelrod

President, American Autonomic Society,

Thank you and the other member of the American Autonomic Society for all the

time that you have and cont. to put into the SDS/MSA work.

I am a 46 female and have 3 children 20, 17, and 14 years of age. My husband

is my backbone that has helped so much .

We would have had a more difficult time dealing with MSA if it had not been

for the information that you have been able to provide.

I was a R.N. than I got to the point that I was not able to work anymore. It

would have been too dangerous for the patients. My life at home has also

changed. To get house work done and cooking and all the good stuff that

other mothers do has become, well I'll put this way I'm not a supper mom

anymore. Doing this letter is a big job for me. My eyes and brains are not

what they use to be.

My family has come to the realization that life is not like or will be as it

was before. They see me use my cane, or walker or they push me in my

wheelchair they try to put on a smile. It was and still is a adjustment.

They know that even the daily tasks of bowl and bladder relief is not

normal. Not to mention the noises I make when I sleep. We all pull together

and make the best of what we have. We have each other.

If it were not for the knowledge and hard work that goes on, and getting

the information out, there would be little hope or no hope for MSA/SDS

patients or there caregivers. In a way you are our caregivers.

Thank-you for caring,

Liz Yanni

P.S.

Thanks to Don and Pam for all your work. Hats off to you!