Working with your doctor

[Guest guest]

I would add to Carol's suggestion a well prepared list of medications,

schedules, prescribing doc, et al. I have just had to take over the

administration of Terry's meds and the table I have been using was a god send.

Previously, I have shared with the list the table I use in WORD 2000

format. If anyone else is interested let me know off line.

Message: 7

Date: Mon, 30 Sep 2002 20:44:08 -0400

Subject: Working with your doctor

Hi gang,

Rob has had a couple of tough weeks and last week we saw his neurologist

(Dr. Freeman, whom some of you met at the conference in Boston). While some

of Rob's difficulty is from the progression of the disease, Dr. Freeman

observed that the Ditropan he is taking for bladder control issues may be

amplifying the effects of the sinamet and amantadine, which is causing him

to feel more " brain fog " and to have mild hallucinations. We're in the

process of cutting back the sinamet and will be switching back to detrol

and adding DDAVP (a medication used to help children with bed wetting

problems) to see if we can reduce the problems.

I'm passing this all along because I think Dr. Freeman is doing a great job

in getting us to focus on what Rob's biggest problems are and helping us

solve them. Neither he nor we think we can cure this thing, but we have a

common goal of working to manage the symptoms as best we can and to

maximize Rob's enjoyment of life. I urge you all to prepare for your

doctor's appointments by making a list of the symptoms you are experiencing

and prioritizing them in order of severity and in terms of which have the

most impact on your enjoyment of life.

Carol & Rob

Lexington, MA

Sennewald Charlottesville, Virginia