still listening

October 27, 2002

Hi all,

I joined this group early this year, as some of you may remember, with

suspicions about my dad having Shy-Drager. I quit the group not very long

after, partially because of the volume of posts, partially because the

tests he had could 'only' prove his abnormal blood pressure and walking

problems (swaying), which was not enough to officially suspect MSA. Of

course that was a convenient moment to think: okay, let's keep this in mind

but let's try to stop worrying so much.

I am back in 'monitoring mode' now; meaning I will try to read as many

posts as possible, staying up to date. I still don't see my dad often, but

have promised my sister to try to visit more often. This week my father has

started using a walker, a cane probably didn't give him enough stability

anymore. He has fallenon 3 different ocasions when he tried to get up at

night, which scared the hell out of him and my mom. He can no longer drive

a car, takes forever eating his dinner and says he needs to use his left

hand to help his right hand if he wants to write something.His blood

pressure is unchanged (low) and he needs to use a urinary catheter. I think

I see a slight tremble in his hands when he gets frustrated, but I don't

see him often enough to be sure, and when I do see him, I find it wise not

to upset him enough to test this

Luckily, both he and my mom are very pragmatic. My sister is an

ergotherapist, which I suspect will be a blessing in the not too distant

future. My parents are already considering what they should do if there is

no improvement, although they also talk about wanting to 'finally receive

the right medication for some of these problems.' I am not clear which, if

any, of these problems can be alleviated at all. they are, however, aware

of the fact that he could be in a wheelchair in 6 months.

My mom doesn't drive, so she is considering taking lessons. Again, not to

upset them, I keep quiet, but I do think I should warn the authorities if

she goes through with that plan. And if any of you want to visit the

southern part of Holland, check with me first & I'll tell you if she's on

the road or not.

Well enough for now. I already feel I'm exaggerating by naming all the

symptoms like this; it has taken me till last month to tell some of my

friends what is going on, just because I wasn't sure if I was making things

worse than they are or if I was mentioning it 'too early' - like I was

already declaring him dead just by mentioning it. Know what I mean?

But my brother, a Physical Therapist, has been e-mailing with my dad's

internist, and he, Abraham Kroon (University Hospital Maastricht) sent an

e-mail which stated, literally: " Yes, I do think your father has a

multisystem atrophia causing his orthostatic neuropathy. " Seeing that black

on white made me swallow hard, but at least it's clear and to the point.

Anyway, I wish everyone on this list strength, comfort and a miracle or two

Marcel Abraas

Rotterdam, The Netherlands

p.s. sorry for the long post - geez, I don't ever shut up, do I?

October 27, 2002