Update on Rob & Carol

[Guest guest]

Dear group,

I've been quiet on the list for a while, and I wanted to let you all

know what's been going on. Rob's had a difficult time recently, but

I think we've made some progress and he's doing a bit better. Here's

what happened:

He started taking Mirapex this winter. At first it seemed to help,

particularly with the cramping in his foot and leg. Then he started

to get confused, and ultimately had a bad case of " brain fog " -- very

poor short term memory, slowed cognition, and (once again) wandering

around at night in his sleep. We (with the doctor's full knowledge

and consent) stopped the mirapex and went back to a higher dose of

sinamet. The confusion got better but the leg cramps got worse. I

the meantime, he was depressed and we began treatment for depression

with Effexor.

Over the past few months he has had increasing difficulty with

bladder control, and is using Depends at night and when we go out for

any length of time. He had been taking Detrol, but switched to

ditropan and just this week, after a visit to the urologist, to

Ditropan XL. The good news is that his bladder is emptying well.

The bad news is that it does it on its own! Hopefully the ditropan

XL will help.

He also saw the sleep neurologist last week and is now scheduled for

a sleep study to see if he's ready for a bi-pap. He's used a cpap

for several years, and recently seems to be snoring in spite of it.

I didn't even know that was possible!

To make a long story short, four years after getting the diagnosis of

SDS/MSA, his symptoms have gotten worse. This is the first time in

those four years that they seem to have gotten this much worse this

fast, and it's been a bit of a shock to us both. We're adjusting

though, and Rob's a real trooper -- he's not going to give in.

Anyway, I wanted you all to know that we're still out here and that

we hope to see a bunch of you in Boston in May.

Carol & Rob

Lexington, MA