How Sasha is right now (March 2013)
Written March 14, 2013 8:52pm
Dear Everyone,
Greg Manning, who keeps things on the rails which might otherwise careen in various and occasionally disastrous directions, and who also reminds me of things I've forgotten to remember, did another vital job two days ago, pointing out to me that a certain website had information about Sasha which is more than slightly out-of-date, and that perhaps I should update it. He's absolutely right, and I apologize for a two-year omission, or whatever it was. This is the most recent information on Sasha:
In November of 2010, Sasha had been, "... struggling for seven months with an ulcer on his left foot ..." which was beginning to heal, and he was anticipating a skin graft within a few weeks, "... hoping to avoid amputation." We had been taking him to a clinic which specialized in ulcers of this kind, mostly seen in diabetics (Sasha doesn't have diabetes; he has peripheral neuropathy), and we had run up against a state of mind too often seen in the medical world, a sort of habit of thinking that goes (approximately) this way: "Patient has foot ulcer; we have seen many millions of such foot ulcers, and we know what to expect of them. Patient's family insists that the usual course of treatment is not necessarily right for this particular patient, and we are trying to make them realize that they are in a state of denial, and that we are simply trying to save them time and money when we argue for the outcome which we know to be right and inevitable, and which they, too, will come to accept as right and inevitable, hopefully without spending too much more time arguing with us. (The obvious, right and inevitable outcome was, of course, A.M.P.U.T.A.T.I.O.N.)
When we found a new and creative Primary Care Physician, Paul Abramson, M.D., about this time, we learned -- from him -- that there was a group of physicians who regarded themselves as rescuers of limbs -- particularly feet which had developed non-healing wounds -- and when I wrote the note for the website, we were about to see Sasha's left foot undergo a skin graft. The clinic had never suggested a skin graft.
During the months that followed the graft, Sasha's physical condition improved on all fronts. The graft took, and even the faintest hint of redness on any part of either foot was treated immediately. No new ulcers were allowed to develop. His diet was high in protein, and the two Tibetan women who took care of him cooked delicious and very healthy meals, particularly soups containing vegetables and chicken. They had learned cooking in India, where they had grown up, and they seemed to really enjoy creating meals out of whatever they found in the refrigerator, without having to consult any recipes. We saved enough money to buy the best food-processor on the market, and it was used every day to make smoothies out of fruits and nuts (more protein). Sasha has had no ulcers for over a year. He is rather frail, most particularly when walking, but his basic strength remains intact. His eyesight is very poor (macular degeneration), and we keep hoping that stem cell research will solve that problem while Sasha is alive and able to undergo whatever procedure might be available, since being able to see more clearly would be a wonderful gift to him.
During all this time, another health problem was beginning to make itself apparent. Sasha was showing the early signs of dementia, mostly severe loss of short-term memory. Unlike the ulcers on the foot, dementia does not get better. One simply hopes that it will stop getting worse, or at least slow down the deterioration. So far, Sasha seems to have retained much of his chemistry memory, and also definitely has most of his word-games and pun-making ability intact. He is very good-natured, just as he's always been, and loves being around people. When he isn't sitting in the lab with Paul Daley (a few times a week), he's down with one of his care-givers in the local Starbucks coffee shop, where a bunch of grey-haired people get together almost every day. He is, apparently, regarded as the group's wizard/wise-man, probably because he says very little, but when he does open his mouth, the words that emerge are either quite wise, or very funny, and usually both. He enjoys his Starbucks hours almost as much as he does the lab hours.
The medicine that has kept Sasha moderately affected by the dementia, and not seeming to worsen much is an old one, created by the great elder of the psychedelic world -- Albert Hofmann -- who called it hydergine. Here, in the U.S., it is called Ergoloid, and it's very expensive. But it works. Unlike the standard dementia medications everyone uses -- Aventia and Namenda -- (have I got those right?), this ergoloid actually slows down the disintegration, and we are tremendously grateful for it. I wish more physicians knew about it and gave it to their patients.
We have been supported in our effort to keep Sasha home, with home-care, by fund-raising every possible way, and by wonderful people who fund-raise for us, and so far we've managed to keep things going and the $360 a day bill for elder-care paid, because of thousands of good and wonderful people who have sent in small bills and big checks and everything in between, but finally, we've had to put several acres of gorgeous hillside on sale, and we're hoping for the best. The economy is healing, so perhaps we'll be successful, and then we won't have to keep fund-raising all the time. Until that happens, we are grateful beyond telling for the support we've been getting from so many people all over the world!
Blessings,
Ann
![:\](https://bluelight.org/xf/BL_Images/Orig_Emoji/wrygrin.gif "wry grin :\")
