This year's Mayo visit; new treatments for Coy
We had our annual visit to Mayo in Rochester, to see Dr. Boeve. We were scheduled for 3 days and I opted to commute. It is good to sleep in our own bed and get the trash to the curb appropriately take care of a little work -- but boy, is it hard to get Coy up in time to be at an appointment 80 miles away by 9:00 am!
The first day included about 3 hours of testing for Coy, and an interview for me. Coy said he did poorly on the tests. I asked him if that bothered him. No, he said, "I expected it." I do think he has accepted his limitations.
The next day we saw Dr Boeve for at least an hour. He said Coy's test results were about the same as last year. The in-office tests of drawing a cube and setting the hands of a clock were definitely not as good as last year.
Coy described all the changes (declines) in the last year. I added details. Boeve asked the same question he asked at our first visit. Which symptoms bothered us most? Where should we start the treatments? Coy said what bothered him most was lack of alertness during the day. I was OK with that. Boeve agreed but said "The first thing I am going to treat is the hiccups!" Coy had hiccuped the entire time in the office. Thorazine is the most effective treatment for hiccups, but obviously not suitable for LBDers, Baclofen is second choice, but hasn't worked for Coy in the last couple of years, and so now we are trying Gabapentin. Cross your fingers. It makes sense to treat this symptom first, because the trial will be short and not delay the other treatments much, and because hiccupping all night probably doesn't contribute to feeling well rested in the morning!
Next, we will be switching from Provigil to Nuvigil. Dr. Boeve has just completed this study: http://clinicaltrials.gov/ct2/show/study/NCT01023672
Results aren't posted yet, but he says that he was very impressed with the drug. It was a small study of 20 patients for 12 weeks, with 3 of the patients formerly on Provigil. He is presenting this at a conference in Ireland next month -- he said that such a small study was chosen shows that there is really little research going on specifically in LBD right now.
After we incorporate Nuvigil, the next change will be to go on the Neupro Patch.
Coy complained of his left knee buckling on him unexpectedly, causing falls. Boeve said "that can be treated" and wrote out a presciption for PT. We have the first session in 2 weeks. Coy was very encouraged about this.
He also wrote out a prescription for massage therapy. We've been doing that anyway, but now it is officially medicinal and insurance may cover it.
I really wasn't expecting much in the way of treatment plan changes this visit. Coy is declining and I thought we'd just have to accept that. Ha! Dr. Bradley Boeve does not give up trying easily.
The third day was devoted to a DaT Scan. This is primarily for research purposes, although Dr. Boeve says they've adjusted treated for about a third of the patients who've had the scans so far. The hope is that this scan can identify better treatment plans earlier, and also serve as the biomarker for measuring the effectiveness of various treatments in trials. I should get the results and talk to Boeve about them in a few days.
He approved of our travel plans (cruising around Lake Michigan) and asked about Coy's daily activities. He said that there is mounting evidence that keeping active may be the most effective treatment for LBD -- in some cases more impressive that drugs.
Another tidbit I learned is that the HABIT program for MCI patients and their caregivers appears to be very promising, and they are working on a similar program for LBD (or maybe specifically DLB -- that part didn't register). Mayo is also working on a manual with a subtitle something like "how to partner with your physician to treat your Lewy Body Dementia." I asked if there was a chapter on how to find a physician who will partner with you, and he grimaced and shook his head. I think that the continuing lack of awareness and enthusiasm in the medical community is an ongoing disappointment to him.