1996 Shy-Drager Conference Transcripts - 1 of 4

[Guest guest]

Shy-Drager Syndrome Support Group 8th International Conference with

the American Autonomic Society

Friday, October 11, 1996

(Opening remarks by Dr. H.P. Streeten, President of the American

Autonomic Society.)

We are all interested in finding the cause for the damage to the

autonomic nerves. This is our biggest challenge, we can manage a few

of the more minor autonomic disorders and we like to think we can do

something to help people with Shy-Drager syndrome. But we know we

can't do as much as we would like to do yet. We are all working

very hard in this area and will continue to do so. We just had a very

exciting session this morning and I hope it will be followed by many

more hours in the following days, tomorrow through Sunday morning. We

learn new things about how the autonomic system works. We can't start

to treat or to cure a disorder unless you understand what the disorder

is all about. We have to start in our research at the beginning as it

were, try and find out how the autonomic system works, and what makes

it tick and what makes it stop ticking. With that information perhaps

we can make use of drugs that are available and other techniques. We

have a young man from Holland here today, for example, who added to

some of the intriguing things that have come from Amsterdam. He

showed us that people whose blood pressure tends to fall when they

stand can be greatly assisted by sitting on a low chair (fishing

stool) and if you crossed your legs when sitting on such a stool, your

blood pressure went up so you could tolerate sitting better. This

person from Holland learned a lot of his information from his patient

who came to see him with her own little stool. She insisted on taking

the stool wherever she went. He asked her why she wouldn't sit in his

chairs and she said that they were too high, they needed to be low

like the fishing stool. So he did some studies on her and she told

him exactly what would make her feel better. He tried her on low

stools and high stools; crossing her legs and all of these things,

many of these were things she suggested, which low and behold, helped

her enormously. So I think this is a great lesson for all us doctors;

we must listen to our patients much more than we do. There is a great

tendency in modern times for us doctors to go to a patient, ask a few

cursory questions and do a few (or many) tests, and then to write a

prescription, pat the patient on the back, say goodbye, know you won't

see them again (or may be you will) without really finding out what it

is that ails the patient. You can learn such a tremendous amount if

you do that and if you show this motivation. So the best way to be

able to help your patient is to try to find out exactly what's wrong

and try to help him. Some patients with Shy-Drager syndrome don't

perspire normally and some are at the other extreme and they can't

stop perspiring, they are wet all the time. When you understand

something about how the autonomic nerve system works you can try to

bridge these difficulties. Now we keep hoping that one of these days

we will find a real cure that will make these damaged nerves grow

again. We keep hoping that we will find a cure; a real cure such as

making the body re-grow parts that are damaged but that is not so

easy. You know the cardiologist can replace your heart if it is

broken but we can't replace the autonomic nerves when they are

destroyed. But short of that, we have to try to bridge the gap

between now and then we all look forward to the " then " and the future.

There is a lot of molecular work that is going on now in days. If

scientists can find out what gene is responsible for the autonomic

nerves and perhaps " turn on " those genes and make them work better

wouldn't that be wonderful. But before we reach the future there is

one piece of news you may have heard of and that is that Midodrine is

now on the market in the United States. These lucky Canadians have

had it for many years and in fact we are getting help from the

Canadian firm that distributes Midodrine. It has just been released

in the United States through pharmaceutical and I am told will

be in the pharmacies the 14th of this month. It should be readily

available in a few days' time. So I do hope that those of you who are

not on it already will be able to get it. One of the marvelous things

about this drug is, in my experience, it is less helpful to people

with other forms of falls in blood pressure when they stand; it is

less effective in patients whose nervous system is still largely

intact but it works like a charm in most patients whose sympathetic

nervous system is not that intact like patients with Shy-Drager

syndrome. And I think they are prime candidates for this medication

and I hope that those patients, who have not been using it, will have

the opportunity to try it out and see if it is helpful. Now with

those few remarks I'll hand over to my colleagues all of whom are

waiting.