Notes from the NE Area SDS/MSA Support Group Meeting -- 2/25/02

[Guest guest]

Hello,

Our meeting was held on Monday, February 25 at 1:00PM at the Lexington,

Massachusetts Senior Center, and we had a great turnout. The following

people were in attendance:

Tony & Marilyn Swartz-Lloyd

Pat Purcell

McAuley

Rob & Carol Langer

& Diane Markey

Vivienne Kalman

Jean Lockhart

Jim & Connie Bynum

& Maddie Viselli

Judy Foreman, a syndicated medical writer, was our guest for the beginning of

the meeting. Judy wrote the article which appeared in the Boston Globe on

January 1, 2002, and she spoke to the group about how to increase publicity

about SDS/MSA. She made several good points:

1.) It's confusing to have more than one name for the illness. We should

all try to focus on calling this by the same name. Multiple System Atrophy

is probably the best choice.

2.) Contact people you know to try to get the story publicized. The reason

Judy wrote about MSA is because she knows Tony Swartz-Lloyd.

3.) It's not just a medical " story " -- it's also a human interest story.

You could pitch it to a medical reporter or a lifestyle reporter. Possible

angles are aging baby-boomers beginning to have neurodegenerative diseases,

the idea of managing your own medical care and having to tell hospital

personnel what to do, the high cost of home care. Create competition among

reporters by working different angles.

4.) Decide before hand what message you want to get across. The three we

talked about were raising awareness of the illness, bringing the lack of

support for home care to light, and encouraging funding for research.

As we went around the room, and Diane Markey introduced themselves and

told us about 's recent diagnosis and the difficulty in finding a doctor

who would listen to him and put his symptoms all together to see the whole

picture. Vivienne Kalman related the story of her husband Albert, who has

recently entered hospice care. Vivienne shared a new resource with us, which

is the " Well Spouse Support Group " which meets monthly at Newton Wellesley

Hospital.

We discussed cognitive problems. A couple of group members are taking

Alzheimers-type medications, which seem to be helping them think more

clearly. The medications mentioned were aricept and excelon.

We also discussed bladder and bowel problems and noted that several group

members are taking detrol xl or ditropan for bladder control problems.

Several people have also benefited from using MiraLax for constipation.

Another topic was " burnout " . We see a lot about caregiver burnout, but what

about patient burnout? The caregiver can get away, if only for an hour or

two, but the patient lives with MSA seven days a week, 24 hours a day.

Suggestions for coping included staying focused on the present, not thinking

too much about what is to come; when having a bad day, thinking that tomorrow

will be better; indulging in a little denial from time to time; and most

importantly, maintaining a sense of humor.

We all wished luck with his back surgery (which was today) and decided

to meet again in a couple of months. Subsequent to the meeting I realized

that since the national meeting is in May, it might be better to push the

next meeting out until after that. If anyone has thoughts on that either

way, please let me know.

Hope to see everyone at the National Meeting, May 3 - 5.

Carol

Carol B. Langer

21 Winthrop Road

Lexington, MA 02421

Telephone -

Fax -

e-mail - cblanger@...