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 20, 2009

changes

Yesterday I took John to try out a lift recliner, and he liked it. Now I need to find a medical equipment place that is a preferred provider for our health insurance and see if buying one there (with the insurance paying $300 for the mechanism) actually comes out cheaper than buying one from a furniture store. John isn't on Medicare yet, but I did get a message from someone at our insurance that with a letter from the doctor they will cover it.

I assembled a couple of shelf units for Aunt Florence. She is buying specialized things so as to get every possible bit of storage space in her smaller apartment. She wanted John to assemble them for her and he tried the first one and couldn't manage it and asked for my help. I just wanted to get it done today so that I will have as much flexibility as possible tomorrow.

Tomorrow is my birthday and I am trying to think of something special to do for myself. I cooked an early father's day dinner tonight so I can put myself first tomorrow. It is a big change of mindset for me to do something for myself on my birthday instead of expecting my family to do it for me. It feels like going in the right direction, if only I can figure out what I want to do.

Tuesday, June 16, 2009

antidepressants

I went on Zoloft (actually the generic) a couple of months ago, feeling that I needed help to get through the stress of house renovations and moving. I'm very medication sensitive and I found that 1/2 a 25 mg. tablet daily was plenty, in fact when I went to my gynecologist, who prescribed it, for my annual checkup I complained that I can't cry any more.

She was concerned about my cholesterol numbers. My HDL is always very high--over 80--and my triglycerides were excellent (34), so it isn't clear that I have to worry. But my LDL was up a lot. I had been on vacation and eating less carefully, but my A1c was down slightly at 6.0, which suggests that my diet hasn't gotten worse. I couldn't figure out what had changed, particularly as my LDL had been trending downwards before that. The doctor asked if I was doing less exercise and I am doing less than two years ago, but not less than at the time of the last test. John's experience is that exercise improves triglycerides and HDL, not LDL. I'm pretty careful to avoid transfats.

I'm already taking fish oil, so what to do to bring my LDL down? As I started to look for information on approaches that would fit my way of eating, I discovered scientific papers that say Zoloft raises LDL. I'm going to taper off the Zoloft and see what happens. See if my LDL improves (the doctor wanted another test in 2-3 months) and see how I feel. One source suggests that Celexa might not have the same effect, if I find I need an antidepressant (and it comes in pills than look like they can be split to get the lower doses that work for me). But I'm hoping I can hold on to this stabler place now that I've found it.

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.

Thursday, June 4, 2009

progression

Here in a different setting, where we come once a year, I can better evaluate how John's illness has progressed. The most noticeable difference is that he is even slower. It really is beginning to take him until noon most days to get dressed and be ready to do anything. That is in part because he spends time reading his email and the New York Times on the computer, but he isn't willing to do it differently in order to participate in a family activity.

He also turned down a family activity one day because he was focused on wanting to go to a favorite food store to get the nuts he likes to snack on.

His slowness and focus on his own interests also means that he doesn't do much of the cooking and cleaning up. Our daughter complained that he wasn't doing his share. When I ask him to do something he asks one of the kids to do it, until I finally complained that I wanted to ask them to do other things. He's done a bit more since I complained (and passed on the complaint that he wasn't doing his share).

Our daughter says she definitely sees a change. She says when she starts talking fast he can't understand her at all. She isn't easy to understand when she talks fast.

I'm feeling a bit resentful because I haven't done some of the things I like to do here, such as ride my bicycle. That is in large part because my daughter's boyfriend is with her, so I'm focused more than usual on family things. But John isn't, so I have less flexibility.

Monday, June 1, 2009

vacation on Cape Cod

John and our son on Coast Guard Beach in Eastham MA. I do notice John doing less than a year ago when we were here.