Letter To The American Autonomic Society

[Guest guest]

Don, I hit the enter key before I finished could you add

this next part to my letter for Dr. Axelrod...Thanks..

My husband who has only had the flu twice in our

41 year marriage was Dx'd with MSA between Nov 99/ Feb 2000.

We were were spared the many years others have gone through, as

it was a matter of 7 months for the Drs. to reach their decision

on what was happening to . We were about to retire after

raising four children to adulthood, and working very hard all

the years of our marriage. Then came a very unwelcome bend in

the road. Now we struggle with so many others to learn how to

make adjustments in our daily living, and our attitude about

our future together. It is a family affair now and we all take

one day at a time. Our adult children mostly live a distance from us

Denver, Texas, and a daughter here in Hilton Head near by. We have

found wonderful support and information via the Vanderbilt Support

Computer List. I happen to be a RN who is never knew what this

disease was the first time our Neurologist told us he thought

had Shy/Drager. I have learned so much from the Vanderbilt group,

and have supplied all our Docs. with as much new info I find on the

list. Recently while my husband was in the hosp the nursing staff

put in his chart all the info I brought to the hosp. The Drs. also

told us they appreciated the additional information. So education of

others regardless of being in the medical field or not is of prime

importance. Please pass along to your Patients this support list

through Vanderbilt.

We close, with sending our sincere appreciation for keeping HOPE alive

and positive in each and every day now. Please continue your work

and we would like to help in anyway that the society would find

helpful. We must remain positive, keep up our humor as we learn

to master new skills just to make it through a day.

Thank You,

and Hanson

Hilton Head Island, S.C.

[Guest guest]

Don, I hit the enter key before I finished could you add

this next part to my letter for Dr. Axelrod...Thanks..

My husband who has only had the flu twice in our

41 year marriage was Dx'd with MSA between Nov 99/ Feb 2000.

We were were spared the many years others have gone through, as

it was a matter of 7 months for the Drs. to reach their decision

on what was happening to . We were about to retire after

raising four children to adulthood, and working very hard all

the years of our marriage. Then came a very unwelcome bend in

the road. Now we struggle with so many others to learn how to

make adjustments in our daily living, and our attitude about

our future together. It is a family affair now and we all take

one day at a time. Our adult children mostly live a distance from us

Denver, Texas, and a daughter here in Hilton Head near by. We have

found wonderful support and information via the Vanderbilt Support

Computer List. I happen to be a RN who is never knew what this

disease was the first time our Neurologist told us he thought

had Shy/Drager. I have learned so much from the Vanderbilt group,

and have supplied all our Docs. with as much new info I find on the

list. Recently while my husband was in the hosp the nursing staff

put in his chart all the info I brought to the hosp. The Drs. also

told us they appreciated the additional information. So education of

others regardless of being in the medical field or not is of prime

importance. Please pass along to your Patients this support list

through Vanderbilt.

We close, with sending our sincere appreciation for keeping HOPE alive

and positive in each and every day now. Please continue your work

and we would like to help in anyway that the society would find

helpful. We must remain positive, keep up our humor as we learn

to master new skills just to make it through a day.

Thank You,

and Hanson

Hilton Head Island, S.C.

[Guest guest]

WOW!! What a letter. I should have taken lessons. Pam, thank you for you

work on the behalf of all of us!

Marilyn in TN

>

> Reply-To: shydrager

> Date: Mon, 21 Oct 2002 14:50:49 -0300

> To: " sds " <shydrager >

> Cc: " Don Summers "

> Subject: Letter to The American Autonomic Society

>

> Dr. Felicia Axelrod

> President, American Autonomic Society

>

> I want to particularly thank those members of the American Autonomic Society

> who have shown a willingness to work collaboratively with other researchers

> around the world to unravel the mysteries of Multiple System Atrophy. More

> collaboration is what is so desperately needed if we are to solve this

> complex problem. A great example of collaborative effort was the consensus

> statement on the diagnosis of Multiple System Atrophy released in 1998.

> This statement was a huge step forward in classifying this disorder and has

> helped to inform doctors of the diagnostic criteria and as a result has also

> helped to ensure patients and families get directed to appropriate support

> resources.

>

> In 1994 when my mother-in-law was first diagnosed with OPCA our family did

> not know this disorder fell under the umbrella name Multiple System Atrophy

> and we did not know where to turn for comprehensive support and information

> about what to expect as this disease progressed. As well, her rather

> strange symptoms of loud snoring and breathing during sleep were never

> explained to us as being a part of this disorder and were not given serious

> attention. Because of your work in classifying and writing about this

> disorder other doctors now know that sleep apnea and respiratory stridor are

> a part of this disease. I know for a fact from the many people I speak to

> on the online MSA support group that this knowledge is prolonging lives!

> Even one more day of quality of life for our loved ones with MSA is

> precious. Your work does make a difference!

>

> Thanks for all your hard work in that past and please continue to find more

> ways to work together for the sake of all families affected with MSA.

> Together there is hope!

>

> Regards,

> Pam Bower

> Mount Uniacke, Nova Scotia

> Canada

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

WOW!! What a letter. I should have taken lessons. Pam, thank you for you

work on the behalf of all of us!

Marilyn in TN

>

> Reply-To: shydrager

> Date: Mon, 21 Oct 2002 14:50:49 -0300

> To: " sds " <shydrager >

> Cc: " Don Summers "

> Subject: Letter to The American Autonomic Society

>

> Dr. Felicia Axelrod

> President, American Autonomic Society

>

> I want to particularly thank those members of the American Autonomic Society

> who have shown a willingness to work collaboratively with other researchers

> around the world to unravel the mysteries of Multiple System Atrophy. More

> collaboration is what is so desperately needed if we are to solve this

> complex problem. A great example of collaborative effort was the consensus

> statement on the diagnosis of Multiple System Atrophy released in 1998.

> This statement was a huge step forward in classifying this disorder and has

> helped to inform doctors of the diagnostic criteria and as a result has also

> helped to ensure patients and families get directed to appropriate support

> resources.

>

> In 1994 when my mother-in-law was first diagnosed with OPCA our family did

> not know this disorder fell under the umbrella name Multiple System Atrophy

> and we did not know where to turn for comprehensive support and information

> about what to expect as this disease progressed. As well, her rather

> strange symptoms of loud snoring and breathing during sleep were never

> explained to us as being a part of this disorder and were not given serious

> attention. Because of your work in classifying and writing about this

> disorder other doctors now know that sleep apnea and respiratory stridor are

> a part of this disease. I know for a fact from the many people I speak to

> on the online MSA support group that this knowledge is prolonging lives!

> Even one more day of quality of life for our loved ones with MSA is

> precious. Your work does make a difference!

>

> Thanks for all your hard work in that past and please continue to find more

> ways to work together for the sake of all families affected with MSA.

> Together there is hope!

>

> Regards,

> Pam Bower

> Mount Uniacke, Nova Scotia

> Canada

>

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>