More on CoQ10

[easterncedar]

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,

Easterncedar

[Hidden]

Very interesting and am major impressed that despite your work and caring you can still find time to plant vegetables.

[NannaB]

Springtime in Maine sounds wonderful. Did they tell you much about the Botox in the salivary glands? It was suggested for my husband by our local Hospice he attends weekly. I had read somewhere that you have to have a PEG fitted before they will do it, although it didn't say why, so mentioned this. They went away and investigated what I had mentioned and said I was correct as it can cause paralysis in the jaw. The PEG fitted would allow him to be fed. He doesn't want a PEG as he can still swallow liquidized food, so he won't be having Botox. It would be interesting to see if others have had the Botox without the PEG and if anyone suffered paralysis following the injections.

[easterncedar in reply to NannaB]

Thanks. I will definitely look into that. The neurologist mentioned the PEG in a separate discussion of swallowing problems, which my guy currently doesn't have. We had generally decided not to have the PEG, but are open to changing that position. Don't want the Botox to be the deciding factor.

[nomansland]

My dear Madeline had it all,the botox in the neck area caused her 8 to 10 days of addl swallowing probs without any add,l benefits....likely the reason for a suggestion that the patient have a pet b4....on the other hand I would try everything again.....we just want our loved one to stay with us but this illness dictates it,s course ,sometimes things work differently for others ,love to you

[snowflur]

My husband did not react well to CQ10.

He was walking and all of a sudden his legs started running! He does not run.. Ever. He fell on his face in the snow. He got up with his cane and it happened again. I came home to band aids all over his face and bloodied hands. Our primary told him to stop taking it and he has been fine. We had such hope it would slow the progression.😣

[easterncedar in reply to snowflur]

oh my. I had never heard of such a reaction. How awful.

[Georgepa]

Glad your trip was fruitful- all these different treatments seem to be fraught with their own problems don't they .I notice that V is now coughing /choking more often when drinking and eating and am wondering if we are approaching another stage .Pleased spring has reached you at long last - it must seem like a long winter but a bit of colour back in one's life goes along way .I too having been trying to get a few vegetables planted but never seem to have enough time to get really stuck in and the weather has been horrible again - wind and rain and cold .

Georgepa