Wednesday, July 16, 2008

update, clinic visit, research studies

Went for my quarterly clinic appointment monday. my muscle strength is stable, and I even rated higher on some functions. They are going to order a home PT to come in ad train the aides with the Hoyer lift. I had put it in the storage space because the aides were hanging clothes on it [now they hang stuff on the IV pole], but I ave to get it from the basement. The aides have been fighting using it because i think that they are afraid I will get lazy, but what they don't realize is that it can save their own backs. Also the PT at the clinic said that there may be days when I am a little weaker, and it would be better for all of us if we had the option. I know about those weak days because I Have had them already! I told them I do not want the PT through VNS. and they are going to use Bayada.

Dr. Scelsa told me of an interesting finding. They have discovered that ALS patients with higher cholesterol counts have had slower progression. Therefore, he said that maybe I should stop taking the Crestor. On the other hand, he said he expects me to be around for a while, and wants me to protect myself from heart attack and stroke. He seemed to want to think this one through; he was on the fence about this one. Also, according to the latest MDA/ALS newsletter, the high-dose COQ-10 study showed that the enzyme COQ-10 given in large doses provided no benefit to ALS patients. As for the lithium/rilutek combo [I stopped my lithium], Dr. Scelsa told me that he has 17 patients taking that drug, and they are all progressing anyway, so he questions its effectiveness. Nevertheless, they have opened enrollment at several clinics for the lithium/rilutek regimen's first drug trial in the US.

I met Louis last night. His wife has been coming to our support group for a few months, but last night was the first time he came with her. He wears his bi-pap 24/7, but can still speak, so he still teaches college from his wheelchair. I look forward to speaking to him online, because he is very much like me, in that he reads a lot and wants to do whatever he can to get out in the world and be among the living. He gave me a lozenge last night used by opera singers to clear up phlegm. It seemed to work well and he swears by it. He gets acupuncture and massage regularly, which is a luxury I can't afford, and has found some Chinese herbs that he finds helpful, whose names he is going to pass on to me. I really like this couple because they believe in living life while managing ALS. Of course, it helps to live in Manhattan, which they do, and have money, which they do. It is harder for me because I have to take Access-a-Ride everywhere to get any enrichment in my life, and once I pay my bills, there is nothing left for massage or acupuncture. There isn't even enough left for yoga classes for women with disabilities at the Hospital for Joint Diseases. And it will never get any better either, because I can pay only the minimums at best, and those minimums will never go down. It's extremely frustrating to me.

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