Boston meeting

[Guest guest]

Hi all,

Here are my impressions and thoughts on the Boston Conference.

First, I feel this was a great meeting from every aspect. The

location was terrific, for a dollar a person in a few minutes you could

reach most parts of Boston via the subway which was much nicer than most

subways I have been on. Sightseeing was easy, shopping was easy and

eating places abounded. Carol can tell you the names of the places,

but there was a block long building with every kind of food imaginable

near the aquarium which was about a 6 minute subway ride from the airport.

The hotel was very nice and my room was great.

Meetings

The doctors seem hopeful that some help is on the way and that we can

see progress within a couple of years, particularly with drugs now in human

tests. BUT a cure is still off in the future. They are hopeful

that a "major breakthrough" may even come from unrelated research such

as fruit fly genetic research. To me this more indication that we

need to have an open discussion of the morals and ethics of medical research

and come up with standards acceptable to the majority of the people in

the USA rather than a few people who make these decisions which can affect

so many people. In one case, someone mentioned that, in time - the

general public would accept stem cell research - but Tony Swartz-Lloyd

pointed out that not all of us have time to wait. ) You all

know that I agree with that, and in Charlotte's case it is already too

late, so my only selfish reason at this point is to beat this terrible

disorder for others. I don't want to be telling caregivers ten years

from now to take their patient to the ER immediately.

For list members, the fiber thing was the only semi-new thing I got

which we had not pushed before. We heard confirmations of things

the list has pushed - hydration, work with doctor to control BP, exercise

helps control symptoms, etc. There was a confirmation also of our

recent discussion of the "brain fog" in that there is a slight frontal

lobe deterioration in some to many patients (as yet not described carefully

in literature) which causes a slight reasoning problem. This is probably

the "brain fog" that Fisher and others have described. While

it is a problem with handling logical decisions and working at a job, it

is no where near dementia. ) I know , it IS still a problem,

but so is balance or movement. I do stand corrected that it is a

symptom of MSA, however it is still more of a problem in PSP or CBGD.

Name of the disorder - several doctors are not happy with MSA as a name,

but it is the "official name" at this time. Doctors admit that MSA

may still be several related or even unrelated disorders and that more

research is needed to identify it. There is even a question of how

related to PD it is, so Parkinson's Plus is not an ideal name. So

like the disorder, this is a tough question.

I feel the topics discussed were also great. We had a wide variety

of topics ) even one on handling crappy details ) Dr. Anastopoulis

is a specialist in the digestive system and really pushed eating a high

fiber diet - but one that the patient could tolerate, especially a diet

high in citrus fruits and dried fruits such as raisins. prunes, etc.

He also pushed hydrating any fiber before it went into your body.

Things like mixing any fiber supplement with something like applesauce

or pudding is much better than taking a fiber pill, which may or may not

dissolve correctly in the body. He advocates saving medical procedures

for emergency use and working on diet to obtain regularity as much as possible.

The people at the conference was the same as the list, everything from

a great knowledge of the disorder to newbies who knew nothing about it.

While this is good, it does create problems as everyone wants to learn

something different. Experienced people want to learn current directions

in care and research, while newbies just want to know what is going on

with their lives and what is coming. Experienced people are talking

doctorese such as ataxia, dysphagia and orthostatic hypotension and some

newbies have no cure as to what we are talking about. ) Actually

I had no idea of some words the doctors used - but got some meaning from

context of the discussion.

Sunday morning we (about a dozen caregivers/patients) had a great open

discussion with members of the SDS/MSA National Board about what the National

group is doing; long range plans; and where patients/caregivers feel it

should be going. I think it was a very constructive meeting which

showed great promise of improving communications and working on obtainable

goals for all of us. We now have several people who have been identified

as volunteers to work on specific tasks. Things we talked about:

***Research - setting up a method of getting and granting research grant

funding. Note that it does take great sums of money to do scientific

research and that it may be some time before we have enough funds to provide

a grant. But hopefully by this time next year, we will have established

a procedure for how to do it and a fund specifically for research.

***Handling volunteers and giving them direction. This is another

area that was discussed and a promise was made to work on communications

in this area. Hopefully we will hear soon about how this will be

handled.

***Finances - The National group is currently getting a grant from Shire

Pharmaceuticals of $20k per year, but the patent runs out next year and

we will probably lose that at that time. Since that money goes to

support the conferences and the 866-SDS-4999 number, we will need money

to support this type of thing in the future. All of us know that

there is a need for funds to handle the everyday expenses of running any

type of national office and this is an area we will have to face in the

coming years.

Other issues were discussed such as a better brochure to pass out to

new members with tips such as the one discussed by the list for years,

a brochure to put in doctors offices and one for doctors themselves.

However time ran out and many had to catch airplanes or start their drive

home. So this will be an ongoing discussion. It is important

that we keep this communication going, so that everyone knows what people

want from their National organization. Several members of the Board

are members of the list although they do not always respond in writing

(just as many of you only listen). Feel free to offer your suggestions

on this list as to direction you would like to see from our National group

and what you can do to help. A good way to begin, is to compile a

list of all your doctors (off list). We need to work out details

in the next weeks, but we want a list of doctors who at least have been

exposed to MSA, along with their name, address, and phone number.

Then we will work on getting brochures about MSA into their offices.

Trying to cram all my thoughts on a great weekend into one email is

not an easy task. I hope this gives you all a brief glimpse at what

we did and the magnitude of MSA. I hope that we have started to give

direction to both the list and the National group and form a strong partnership

that will grow to meet every need of brain disorder(s) patients and caregivers.

We all want one unified voice speaking for MSA patients and caregivers.

All in all, I feel it was a great success and want to thank the National

group and all involved for doing an excellent job on this conference.

The audio tapes are in the hands of a volunteer for editing. Someone

else will have to give you details as that is completed.

Take care, Bill Werre