Well. last Friday we finally made it down to the Lahey Clinic for our several-times-cancelled appointment with the neurologist. The Boston area is finally free of snow, and is in fact quite lovely with blooming cherry and magnolia trees and daffodils, forsythia and tulips everywhere, and the appointment was surprisingly valuable, so it was worth the long trip.
I have mentioned before that Dr. Apatauerova's preliminary report last year was that she did not see great results from the CoQ10 study she had been directing these past few years; however, she said this time, after more processing of the data, that her conclusion is that there is a beneficial effect, with her caveat that the patient pool was small and there was a large drop-out rate, so the statistics are not as well founded as would be preferred.
I hope I am not making an error in my paraphrasing, but what I understood her to say is that on a scale of 1 to 100, the expected annual decline for a psp patient is about 12.5. The patients getting the placebo were consistent with that. With 2400 mgs of CoQ0 daily the annual decline was about 5. So it's no cure, and it is expensive, but there's reason to believe it can slow the progress of the disease.
She also said that my guy has held his ground comparatively well. He has been taking 1200 mgs the past year, down from 1800 the previous period. We will be bumping it back up.
I failed to ask her whether there was any specific type or form of CoQ10 that she would recommend, so we will keep getting whichever one is on sale.
She also strongly recommended botox injections for my sweetheart's drooping eyelid, which has been bothering him a great deal. She said she has about a 90% success rate with the injections, which are repeated every three months. She said she has not had a patient in which the efficacy ceased, as some folks here have reported. She also recommended that he at the same time have botox injections, by an ENT specialist, in his salivary glands, which are over-producing. The effect there is less certain, but worth a try. We will be returning to Massachusetts for both of these treatments at the end of July, the first available appointments we could coordinate. I'm very curious as to the effect of these and wish the appointments were sooner, but the trip took so much out of us it's probably just as well we have some time to recover.
I finally planted peas and lettuce on Sunday. It's spring here in Maine.
Love and peace to all,