Here are some notes from our two-part visit, as study participants. Obviously everything was geared to our personal experience, but I thought some of you might like to peek over our shoulders a little.

First, the outcome: The many hours of testing confirmed our observation: Coy's condition remains stable. (And all results are remarkably better than they were on the first visit.)

Some notes from the caregiver's interview: While Coy was being tested, I was interviewed. It was a little different approach than other years. In addition to asking about Coy, the therapist also asked about me. She said there is more research interest in the caregiving role. There is concern about an unexpectedly high rate of the caregiver dying before the loved one. Because of our age difference, I've not been too concerned about that, but she pointed out that becoming disabled is also a risk for caregivers. Specifics she mentioned for me included regular exercise, support groups, and help/support from family.

She was glad to hear that I am planning a family conference soon, and suggested I add to the agenda a contingency plan for what the family would do if I were unable to continue in the caregiver role.

She was very enthusiastic about the walk-in tub I have ordered, and thinks that more people should do things like that long before the need arises. I guess I'm doing it right for myself (I don't need it yet), but wish I'd done it about 5 years ago for Coy.

She also urged exercise for Coy, especially walking. The drawback of the electric cart would be if it minimizes the walking he does. (In our case that is not a concern.)

The conversation with Brad Boeve: I asked (again) why Coy's first year was particularly severe, and whether it was the treatment plan that overcame that. I've seen on the discussion boards other people who had that experience, though it doesn't seem to be the norm. Boeve says that there is now a suspicion (not yet confirmed) that some people may experience inflammation in the brain as the autoimmune systems starts to fight off the formation of Lewy bodies. If this proves to be true it would have implications for treatment in the early days, so there will probably be some research on this specific topic. In this theory, Coy improved both because the drugs were effective and also because the inflammation subsided.

As always in the past, Boeve encouraged "novelty" experience. Trips, outings, board games, things like crossword or Sudoku, music therapy, attending concerts, etc. can create new connections the brain and each new connection is another obstacle to the pathology's complete takeover of the brain. He acknowledged that keeping things familiar has its benefit for some people in some circumstances, but for Coy he recommends novelty.

He also encourages exercise, and it doesn't have to be strenuous or long to have benefit. He really likes that Coy bowls weekly, as that has a social aspect as well as physical activity. Healthy diet is also important. Current thinking is that the so-called Mediterranean diet is a good model.

I’ll post a few more notes in the Research section.

By the way, Rochester may be a medical mecca but it definitely isn't the entertainment capital of the Midwest! We stayed overnight, but it is pretty hard to come up with something to do on a Monday evening. We decided on getting a massage and eating at a nice non-chain restaurant. Not a bad plan.

Dr. Boeve said he sometimes thinks the clinics are so successful because there are so few local distractions for the clinicians, and they pour all their energy into their work! So I guess we won't complain about lack of a rich night life in Rochester!

Jeanne,
This sounds like a wonderful report, I wish more people could go there and yes there is much thought today on the caregiver and it's nice to see they are finally seeing the toll it takes on the caregiver.

I was really interested in reading about the inflammation of the brain, it really makes a great deal of sense to me and it would account for so many reacting to it as there behavior is so different for each person and I do hope they put more research into this area as this could be a possible help if they can help a patient with this early on.

Sounds like you made nice plans for a Monday night, not too much but just enough!!

Yes,

The inflamation(autoimune-response) is interesting and makes sense. I wonder if ibruprofin helps reduce the inflamation as it does for other parts of the body?

Sharon E.

Jeanne, thank you so much for sharing your visit with us! The 'inflammation' theory is very interesting.

It is certainly plausible that, in the earlier stages, stimuli would help slow the rate of progression. We did play card games [replacing bridge with Rummy or Crazy Eights] and did simpler crossword puzzles together, with each taking a turn, which would help get him clued in. Even early in his disease, however, noise and conversation would irritate him. A clinical psychologist told me it was his Exelon that made his hearing hyperacute but neurologists cannot corroborate that. Soft classical music is about all he can tolerate. My voice is naturally low but if someone else with a higher pitched voice is talking he gets very upset. Visual stimuli seem to have less and less impact as time goes by, either positively or negatively.