LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Saturday, June 13, 2009

doctor's visit

John had a neurologist's visit Thursday. John reported that his balance is worse and we both reported that he is moving slower. He asked about increasing the Sinemet but the doctor said no because the doctor found his muscles not stiff. The doctor seems most worried about falls.

We asked about when the doctor thinks Namenda should be started. He said when the Aricept stops working. What I wonder is whether the Namenda would be any better than the Aricept, which John takes only a half dose of because it causes him balance problems.

John reported that he doesn't get enough air through his nose and needs to breathe through his mouth. The doctor asked about allergy symptoms, but John said it is true even when his nose is not running. The doctor suggested more exercise to strengthen his chest and diaphram muscles. John said he would go back to using our exercise bike. He does take a 1/2 hour walk several times a week, but I don't know how aerobic that is.

After we got back from Massachusetts it was several days before I got John to go visit the other house, and then he didn't say much. The renovations are in the stage where everything is torn out and some of the changes are framed in. I did get him to make a decision about whether he wanted a larger closet or more built in bookshelves. But it feels like he isn't interested, which is hard on me. It is mostly just one more thing than he can deal with--he has trouble getting the necessary things done in a day.

I'm having a tough time because the main part of the budget for the program I run at work just got eliminated. My job is safe but it is discouraging and hard to know what to do. We also got a lowball offer on our current house and they haven't responded to our counteroffer.

1 comment:

Joann said...

Drugs work differently for different people, and Betty certainly has a very different diagnosis than John, so perhaps Namanda wouldn't have similar effects. In her situation, however, the Namanda made her affect very flat and she slowed down and was shuffling along like a zombie. I'm sure that you have researched this thoroughly and know more than I ever could, but I thought I'd mention our individual experience.

For us, we decided to withdraw all meds (Aricept and Namanda) to allow the natural progression rather than see her shuffle like a zombie. Age and stage are very, very different than John and your situation, however.

I know they're coming up with new drugs soon. Maybe some of them will be beneficial for John. Ihope you can find hope.