Re: DC Metro SUPPORT GROUP

[Guest guest]

,

The biggest thing to have a group is to have a base of loyal members

who will come unless there is a good reason. I had to miss one meeting

as Charlotte was in the ER getting her PEG replaced. But having you,

and her husband, Rose and her husband and the Moller's as a base,

makes it worthwhile to schedule a meeting as we know someone will be there.

Now we seem to have a much larger base with so many new people.

Other groups should ask their PT and ST people if they know of more

people with the same problems. If they don't have MSA, they may still

have a similar disorder such as PSP, CBGD, PAF or even POTS. We now

have a base of MSA patients, but also some without a complete dx and

a CBGDer, a POTS patient and a probable PAF patient. We all have

the same caregiving problems.

Our new member Barbara has been active in the PD group (like Tim Foley

was in his PD group) and actually met Joan son and the Kondracke's

(Saving Milly). I am going to try to work through her contacts to

see if we can work together to get the word on MSA and all the other PD+

disorders. ) Maybe we can get Kondracke to do a book on "The Tip

of the Iceberg" with PD and the PD+ disorders ) I do like the subtitle

of "Saving Milly: Love, Politics, and Parkinson's Disease" as it

also suits any brain disorder caregiving situation. Just substitute

MSA, CBGD, PSP, ALS or others for PD.

Take care, Bill

=======================================

Sennewald wrote:

Thanks Bill for the very helpful recap of our meeting.

Having the names

should be helpful to0 all of us. And, it helps keep the group

together.

Message: 5

Date: Mon, 18 Mar 2002 13:17:52 -0500

Subject: DC Metro Support Group

Hi all,

In spite of the rain, we had a great turnout for our Saint 's

Day

meeting. Rose and Clarence Crisman attempted to make it, but

had to

turn back as it was sleeting in the mountains of West Virginia.

They

are fine as I talked to her this morning.

Thanks to the Moller's for the use of their home for the meeting.

Everyone had a great time. Thanks also to the thirteen people

who

turned out:

Terri and * Moller (of course they were there it's their home)

Sennewald (who drove 120 miles each way to be there)

* Spires and her husband Bob (list members for a few years)

Kay and *Jack Mulford ** (Jack has MSA)

Barbara Kupperman ** (her husband was dxed as PD 12 years ago and

recently as MSA, she has been active in the PD group)

* Ann and Soloman (who are list members - but silent)

Mamie Burton (a new member of the list recently)

Doug Caprette (he has been a list member for a few years - his father

had MSA and passed away last August in Ohio)

and me of course )

* Has MSA or another brain disorder

** We found these nearby members through Moller's physical

therapist

For those of you trying to start a support group, the DC group started

in October 1999 when Charlotte and I met with Terri and Moller

in a

small park at a picnic bench in Bethesda, MD. We went through

meetings

with as little as two people, so don't get discouraged. We have

found

that for our group, Sunday afternoons are best and they prefer informal

sessions, where we discuss concerns of all.

Note - I forgot to ask if anyone else is going to Boston.

Hey, who on the list is going to Boston? You can still get cheap

airline flights now.

Take care, Bill Werre

Sennewald

Charlottesville, Virginia

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

,

The biggest thing to have a group is to have a base of loyal members

who will come unless there is a good reason. I had to miss one meeting

as Charlotte was in the ER getting her PEG replaced. But having you,

and her husband, Rose and her husband and the Moller's as a base,

makes it worthwhile to schedule a meeting as we know someone will be there.

Now we seem to have a much larger base with so many new people.

Other groups should ask their PT and ST people if they know of more

people with the same problems. If they don't have MSA, they may still

have a similar disorder such as PSP, CBGD, PAF or even POTS. We now

have a base of MSA patients, but also some without a complete dx and

a CBGDer, a POTS patient and a probable PAF patient. We all have

the same caregiving problems.

Our new member Barbara has been active in the PD group (like Tim Foley

was in his PD group) and actually met Joan son and the Kondracke's

(Saving Milly). I am going to try to work through her contacts to

see if we can work together to get the word on MSA and all the other PD+

disorders. ) Maybe we can get Kondracke to do a book on "The Tip

of the Iceberg" with PD and the PD+ disorders ) I do like the subtitle

of "Saving Milly: Love, Politics, and Parkinson's Disease" as it

also suits any brain disorder caregiving situation. Just substitute

MSA, CBGD, PSP, ALS or others for PD.

Take care, Bill

=======================================

Sennewald wrote:

Thanks Bill for the very helpful recap of our meeting.

Having the names

should be helpful to0 all of us. And, it helps keep the group

together.

Message: 5

Date: Mon, 18 Mar 2002 13:17:52 -0500

Subject: DC Metro Support Group

Hi all,

In spite of the rain, we had a great turnout for our Saint 's

Day

meeting. Rose and Clarence Crisman attempted to make it, but

had to

turn back as it was sleeting in the mountains of West Virginia.

They

are fine as I talked to her this morning.

Thanks to the Moller's for the use of their home for the meeting.

Everyone had a great time. Thanks also to the thirteen people

who

turned out:

Terri and * Moller (of course they were there it's their home)

Sennewald (who drove 120 miles each way to be there)

* Spires and her husband Bob (list members for a few years)

Kay and *Jack Mulford ** (Jack has MSA)

Barbara Kupperman ** (her husband was dxed as PD 12 years ago and

recently as MSA, she has been active in the PD group)

* Ann and Soloman (who are list members - but silent)

Mamie Burton (a new member of the list recently)

Doug Caprette (he has been a list member for a few years - his father

had MSA and passed away last August in Ohio)

and me of course )

* Has MSA or another brain disorder

** We found these nearby members through Moller's physical

therapist

For those of you trying to start a support group, the DC group started

in October 1999 when Charlotte and I met with Terri and Moller

in a

small park at a picnic bench in Bethesda, MD. We went through

meetings

with as little as two people, so don't get discouraged. We have

found

that for our group, Sunday afternoons are best and they prefer informal

sessions, where we discuss concerns of all.

Note - I forgot to ask if anyone else is going to Boston.

Hey, who on the list is going to Boston? You can still get cheap

airline flights now.

Take care, Bill Werre

Sennewald

Charlottesville, Virginia

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

,

The biggest thing to have a group is to have a base of loyal members

who will come unless there is a good reason. I had to miss one meeting

as Charlotte was in the ER getting her PEG replaced. But having you,

and her husband, Rose and her husband and the Moller's as a base,

makes it worthwhile to schedule a meeting as we know someone will be there.

Now we seem to have a much larger base with so many new people.

Other groups should ask their PT and ST people if they know of more

people with the same problems. If they don't have MSA, they may still

have a similar disorder such as PSP, CBGD, PAF or even POTS. We now

have a base of MSA patients, but also some without a complete dx and

a CBGDer, a POTS patient and a probable PAF patient. We all have

the same caregiving problems.

Our new member Barbara has been active in the PD group (like Tim Foley

was in his PD group) and actually met Joan son and the Kondracke's

(Saving Milly). I am going to try to work through her contacts to

see if we can work together to get the word on MSA and all the other PD+

disorders. ) Maybe we can get Kondracke to do a book on "The Tip

of the Iceberg" with PD and the PD+ disorders ) I do like the subtitle

of "Saving Milly: Love, Politics, and Parkinson's Disease" as it

also suits any brain disorder caregiving situation. Just substitute

MSA, CBGD, PSP, ALS or others for PD.

Take care, Bill

=======================================

Sennewald wrote:

Thanks Bill for the very helpful recap of our meeting.

Having the names

should be helpful to0 all of us. And, it helps keep the group

together.

Message: 5

Date: Mon, 18 Mar 2002 13:17:52 -0500

Subject: DC Metro Support Group

Hi all,

In spite of the rain, we had a great turnout for our Saint 's

Day

meeting. Rose and Clarence Crisman attempted to make it, but

had to

turn back as it was sleeting in the mountains of West Virginia.

They

are fine as I talked to her this morning.

Thanks to the Moller's for the use of their home for the meeting.

Everyone had a great time. Thanks also to the thirteen people

who

turned out:

Terri and * Moller (of course they were there it's their home)

Sennewald (who drove 120 miles each way to be there)

* Spires and her husband Bob (list members for a few years)

Kay and *Jack Mulford ** (Jack has MSA)

Barbara Kupperman ** (her husband was dxed as PD 12 years ago and

recently as MSA, she has been active in the PD group)

* Ann and Soloman (who are list members - but silent)

Mamie Burton (a new member of the list recently)

Doug Caprette (he has been a list member for a few years - his father

had MSA and passed away last August in Ohio)

and me of course )

* Has MSA or another brain disorder

** We found these nearby members through Moller's physical

therapist

For those of you trying to start a support group, the DC group started

in October 1999 when Charlotte and I met with Terri and Moller

in a

small park at a picnic bench in Bethesda, MD. We went through

meetings

with as little as two people, so don't get discouraged. We have

found

that for our group, Sunday afternoons are best and they prefer informal

sessions, where we discuss concerns of all.

Note - I forgot to ask if anyone else is going to Boston.

Hey, who on the list is going to Boston? You can still get cheap

airline flights now.

Take care, Bill Werre

Sennewald

Charlottesville, Virginia

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Bill:

I agree with all of your thoughts and would add support for your idea of

Morton Kondracke doing a book. Perhaps, he would not have the same

emotional commitment with MSA as a subject. On the other hand, he has been

down the road once and perhaps he with the help of his staff as a ghost

writer would take the project on.

Why not invite him to our next meeting, perhaps with a lunch thrown in

before hand. I am making some arrangements with the UVa Private Duty

Service Department to set up Home Health Aid Service for Terry so mid week

travel would be a bit easier for me.

PS I would bet some of the medical resources in the DC Area could be

enlisted to help; e.g. Dr. Goldstein at NIH and others. as well as the

entire list.

Message: 8

Date: Tue, 19 Mar 2002 11:06:07 -0500

Subject: Re: DC Metro Support Group

,

The biggest thing to have a group is to have a base of loyal members who will

come unless there is a good reason. I had to miss one meeting as Charlotte

was in the ER getting her PEG replaced. But having you, and her

husband, Rose and her husband and the Moller's as a base, makes it worthwhile

to schedule a meeting as we know someone will be there. Now we seem to have

a much larger base with so many new people.

Other groups should ask their PT and ST people if they know of more people

with the same problems. If they don't have MSA, they may still have a

similar disorder such as PSP, CBGD, PAF or even POTS. We now have a base of

MSA patients, but also some without a complete dx and a CBGDer, a POTS

patient and a probable PAF patient. We all have the same caregiving

problems.

Our new member Barbara has been active in the PD group (like Tim Foley was in

his PD group) and actually met Joan son and the Kondracke's (Saving

Milly). I am going to try to work through her contacts to see if we can work

together to get the word on MSA and all the other PD+ disorders. ) Maybe

we can get Kondracke to do a book on " The Tip of the Iceberg " with PD and the

PD+ disorders ) I do like the subtitle of " Saving Milly: Love, Politics,

and Parkinson's Disease " as it also suits any brain disorder caregiving

situation. Just substitute MSA, CBGD, PSP, ALS or others for PD.

Take care, Bill

Sennewald Charlottesville, Virginia

[Guest guest]

Bill:

I agree with all of your thoughts and would add support for your idea of

Morton Kondracke doing a book. Perhaps, he would not have the same

emotional commitment with MSA as a subject. On the other hand, he has been

down the road once and perhaps he with the help of his staff as a ghost

writer would take the project on.

Why not invite him to our next meeting, perhaps with a lunch thrown in

before hand. I am making some arrangements with the UVa Private Duty

Service Department to set up Home Health Aid Service for Terry so mid week

travel would be a bit easier for me.

PS I would bet some of the medical resources in the DC Area could be

enlisted to help; e.g. Dr. Goldstein at NIH and others. as well as the

entire list.

Message: 8

Date: Tue, 19 Mar 2002 11:06:07 -0500

Subject: Re: DC Metro Support Group

,

The biggest thing to have a group is to have a base of loyal members who will

come unless there is a good reason. I had to miss one meeting as Charlotte

was in the ER getting her PEG replaced. But having you, and her

husband, Rose and her husband and the Moller's as a base, makes it worthwhile

to schedule a meeting as we know someone will be there. Now we seem to have

a much larger base with so many new people.

Other groups should ask their PT and ST people if they know of more people

with the same problems. If they don't have MSA, they may still have a

similar disorder such as PSP, CBGD, PAF or even POTS. We now have a base of

MSA patients, but also some without a complete dx and a CBGDer, a POTS

patient and a probable PAF patient. We all have the same caregiving

problems.

Our new member Barbara has been active in the PD group (like Tim Foley was in

his PD group) and actually met Joan son and the Kondracke's (Saving

Milly). I am going to try to work through her contacts to see if we can work

together to get the word on MSA and all the other PD+ disorders. ) Maybe

we can get Kondracke to do a book on " The Tip of the Iceberg " with PD and the

PD+ disorders ) I do like the subtitle of " Saving Milly: Love, Politics,

and Parkinson's Disease " as it also suits any brain disorder caregiving

situation. Just substitute MSA, CBGD, PSP, ALS or others for PD.

Take care, Bill

Sennewald Charlottesville, Virginia

[Guest guest]

I read somewhere that Morton Kondrake's wife Millie was actually diagnosed

with MSA after believing for many years it was PD ... does anyone else

remember reading that?

Hugs,

Pam

Re: DC Metro Support Group

> Bill:

>

> I agree with all of your thoughts and would add support for your idea of

> Morton Kondracke doing a book. Perhaps, he would not have the same

> emotional commitment with MSA as a subject. On the other hand, he has been

> down the road once and perhaps he with the help of his staff as a ghost

> writer would take the project on.

>

> Why not invite him to our next meeting, perhaps with a lunch thrown in

> before hand. I am making some arrangements with the UVa Private Duty

> Service Department to set up Home Health Aid Service for Terry so mid week

> travel would be a bit easier for me.

>

> PS I would bet some of the medical resources in the DC Area could be

> enlisted to help; e.g. Dr. Goldstein at NIH and others. as well as the

> entire list.

[Guest guest]

I read somewhere that Morton Kondrake's wife Millie was actually diagnosed

with MSA after believing for many years it was PD ... does anyone else

remember reading that?

Hugs,

Pam

Re: DC Metro Support Group

> Bill:

>

> I agree with all of your thoughts and would add support for your idea of

> Morton Kondracke doing a book. Perhaps, he would not have the same

> emotional commitment with MSA as a subject. On the other hand, he has been

> down the road once and perhaps he with the help of his staff as a ghost

> writer would take the project on.

>

> Why not invite him to our next meeting, perhaps with a lunch thrown in

> before hand. I am making some arrangements with the UVa Private Duty

> Service Department to set up Home Health Aid Service for Terry so mid week

> travel would be a bit easier for me.

>

> PS I would bet some of the medical resources in the DC Area could be

> enlisted to help; e.g. Dr. Goldstein at NIH and others. as well as the

> entire list.

[Guest guest]

Bill:

Very, very interesting!! Perhaps Barbara Kupperman could try and verify

this. If true, it might help on the book writing idea. What a sequel that

would make.

Message: 1

Date: Wed, 20 Mar 2002 07:57:46 -0400

Subject: Re: Re: DC Metro Support Group

I read somewhere that Morton Kondrake's wife Millie was actually diagnosed

with MSA after believing for many years it was PD ... does anyone else

remember reading that?

Hugs,

Pam

Sennewald Charlottesville, Virginia

[Guest guest]

Hi all,

The vote is in and the result is to have the meeting on the 28th.

So we will meet at the Moller's on Sunday, April 28th at 1 PM

Where The Moller's

7109 Masters Dr

Potomac, MD 20854-3846

(301)983-8779

How to get there:

>From the DC Beltway (I-495)

Coming from Virginia - As you cross into land keep to the far right

and take the Clara Barton Parkway exit (on the Bridge) west toward Great

Falls. The Clara Barton Pkwy ends at MacArthur Blvd where you make a

left. At the first stopsign (Brickyard Road) make a right and take the

first left onto Stable Lane. Masters Drive is the first right turn and

the Mollers live about a tenth of a mile on the right.

***

If anyone is coming from the land side of the river on I-495 take

the Carderock/Great Falls exit 41 which goes onto the Clara Barton Pkwy.

The Clara Barton Pkwy ends at MacArthur Blvd where you make a left. At

the first stopsign (Brickyard Road) make a right and take the first left

onto Stable Lane. Masters Drive is the second right turn and the

Mollers live about a tenth of a mile on the right.

***

If you are coming from Rockville, MD or west on the land side, you

may want to take Falls Road south off of I-270. Falls Road dead ends at

MacArthur Blvd where you would take a left and go to the stopsign at

Brickyard Road (1.5-2 miles) and make a left and take the first left

onto Stable Lane. Masters Drive is the first right turn at stop sign,

and the Mollers live about a tenth of a mile on the right.

***

Let us know if you need the ramp put up, the house has one step to the

porch and one step to the house from the porch, but Terri has ramps for

both steps. They are only 3-5 minutes from I-495.

You can also call me for directions at

Take care, Bill