Tag Archives: donations

Ann’s Update: 10 Mar 2011

March 10, 2011 6:32:01 PM PST

Dear Friends, Strangers and Visitors from Other Solar Systems,

Now, as to Sasha’s state of brain and mind.  As you know, he has mild dementia, which is the reason we have round-the-clock care.  For a couple of years, he was taking Aricept and Namenda, which may or may not have helped slow the process, but which obviously weren’t doing much of anything recently.  Our new doctor, Paul Abramson, decided to take him off those, and put him on hydergine, Albert Hofmann’s compound.  That was about three weeks ago.  I didn’t expect any obvious results, and of course one never knows if a state of dementia is being slowed down; I mean, how would you tell?

So when Dee (one of our miraculous Tibetan women) told me that Sasha was suddenly doing certain little things (like feeding himself) which he hadn’t been doing before, I said “What!  He is?”  or something like that, and she then listed a few other things that he was doing better, all of which was astonishing.  Clearly, the hydergine has been changing things.  He takes it three times a day.

I’m thinking seriously of asking our doctor if I might try the drug myself.  After all, it’s my understanding that Albert and his wife took it themselves for many years, and my thinking, focusing and memory could use a bit of sharpening, to say the least!

I know that dementia is not reversible, and that the brain’s blood vessels can’t be cleaned out the way some blood vessels in the legs can be, but even small improvements — less sleepiness (sometimes), more ability to focus on things that matter to him (like chemistry), a bit less “sundowning” in the evenings (sometimes) — become immensely important to all of us.  It’s like getting a bit more “real Sasha” back, even if it isn’t every day or every evening.  We really celebrate every improvement of this kind, and hope that it’ll last for a while.

I hear from Greg that an amazing number of lovely people have asked what I want for my birthday.  A card would be wonderful, but as for gifts — I’m sure you’ll understand when I say that what matters to me most is being relieved of the constant anxiety about how we’re going to afford to keep Sasha at home with the excellent and loving care he’s getting from our three Graces.  By the way, Sasha’s increase in physical strength, his ability to walk now with a cane instead of a walker, is entirely due to the women who take care of him and put him through exercises all day long (although they do let him nap a bit in his chair after meals).  They treat him like their own fathers, with love and humor, and you can’t put a price on that.

So what I want for my birthday is to find a few very wealthy and compassionate people who are interested in consciousness and familiar with the world of psychedelics, and who understand what Sasha’s work has meant — and will continue to mean, long after he dies — and can afford to help us keep him home and so very well cared-for.

In the meantime, I feel tremendous gratitude to all of you who have sacrificed God knows what, to send us whatever you could.  It’s because of you that we’ve made it this far, and I hope you understand that I can’t thank you individually, although I would if I could.

The best thing I can do in return is to continue The Third Book.  I’ve finally gotten to the point where I can put aside one whole day a week (with Tania’s help) to do nothing but write.  Several chapters are already half written, and I’m going to re-write them and continue with new chapters and the necessary research next week.  Tania is away this weekend, but after Sunday, she’ll be able to take the phones and keep the world at bay for that one whole day a week, and I’ll get started.

For now, I wish you all Blessings — and don’t forget to re-set your clocks before bed on Saturday.

Love and thanks — Ann

Ann’s Update: 18 Jan 2011

Dear Friends Everywhere,

Wonderful news!  The skin graft, which has been considered almost surely a success, but with a couple of questionable places that were being carefully watched, is now officially a complete success!  We can see the new skin clearly, and the nurse who comes three times a week to change the dressing said, “It’s time to be happy!  The graft is perfect!”

There is still the small ulcer on the heel, but that is considered the result of pressure over a long period of time in bed, and it is looking a bit better.  Sasha is being taken on short walks with the walker (and with a caregiver by his side) every hour, and we are trying to get him to remember to walk only on the ball of the left foot, not on the heel.  And whenever he sits down for a while, his left leg is lifted on pillows so that the heel hangs in the air, without any pressure of any kind.  The heel is the source of considerable pain, whenever it is touched, and we hope it’s going to clear up soon.  Sasha’s other source of pain, which might or might not clear up in time (weeks? months? years?) is his peripheral neuropathy, together with (says our doctor) pain caused by regeneration of damaged nerves.  We aren’t sure what causes the needle-strike pains which hit him usually in the mornings and always in the late evenings, but if it’s nerve regeneration it would theoretically fade away when the nerves recovered.  If it’s the neuropathy, he’ll probably have it the rest of his life, which means he’ll have to be on pain meds, which means he won’t be able to drink red wine again, which is a dreadful thought.  We do give him a glass of Fre wine, which is non-alcoholic, whenever a guest comes to dinner and brings a bottle of red wine.  He’s put up with that for quite a while, and there are times when I think he forgets it isn’t the genuine stuff.

Inevitable question from one of you:  How could Sasha not know that non-alcoholic “wine” is not real red wine?  Answer:  aside from the mental state (the “d” word), he lost all sense of smell several years ago, which is something that can happen to chemists when they are elderly, simply as a result of having been exposed to too many chemicals over too many years. It’s quite common among serious chemists when they’re over 75 or so.  And loss of smell means alteration of the tasting ability.

Again, I send my fervent thanks to all of you who have donated anything from fifty cents to thousands of dollars to help us with the cost of 24-hour home care.  Without your help, we would be forced to entertain thoughts of nursing homes or places like it, which would be really dreadful for a man like Sasha, whose mind is still bright and creative (some days are better than others), despite the memory loss.  As soon as he can walk as far as the lab, he’ll be back out there and truly happy, but he will still need a caregiver close by.

So thank you all again, with all my heart.

Blessings — Ann

Ann’s Update: 12 Jan 2011

Dear Friends, Romans, Countrymen, Lend me your Ears,

We drove Sasha to the surgeons, Dr. Parrett and Dr. Safa, both excellent, skillful, indeed — vastly superior —  vascular surgeons who did the job of saving his left foot.  They examined and admired, then carefully re-wrapped the lovely skin-graft.  Then they said the magic words, “It’s time for Sasha to put some weight on his foot and begin walking, just a few minutes several times a day,” and we began smiling.  They told us to return in two weeks, at which time they would “ratchet up the activity.”  Later, when we were home again, I phoned Dr. Abramson (“Dr. Paul”) and asked how long I should continue giving Sasha the heparin shots, and he said that as soon as he began walking, he wouldn’t need the heparin to prevent clots from forming.  That was good news.  I’ve managed to learn how to give a shot smoothly and without more than a smidget of anxiety, but I’m very happy to give it up, too.

Sasha still has needle-strike pains, now and then, sometimes in both left and right feet, but usually in the left one, and he may need pain meds for quite a while.  If the pain is due to nerve regeneration, there will come a time when the needles will disappear; if due to peripheral neuropathy (as I think I already described), they may be permanent.  We’re hoping for the former, but if it’s the latter, there’s hope that the attacks will come less frequently.  But right now, we’re so happy about the saving of his foot, we’re not going to worry about anything else.  For 24 hours, at least.

I’ll write more tomorrow, if I can; otherwise, I’ll be back with you Thursday.  In the meantime, I send my thanks and deepest gratitude to those dear hearts who have contributed money, both small amounts and very large, all of them received with feelings of something close to awe.  I know that Sasha has contributed to the happiness and increased richness of many lives, but it still seems incredible that so many of you are sending help — in the form of money — as well as expressions of love.  We are determined to care for him at home, no matter how far the so-called dementia may go.  Right now, his chemical knowledge is still mostly intact, just as his musical memory is.  He’ll be walking to the lab within a week or two, at the most, and he’ll be back in the world he loves, with the help of Paul Daley.  We will continue giving him round-the-clock care as long as we can afford it, and we’ll continue raising funds every way we can so that we’ll be able to afford it.  I’m very optimistic, and that’s due entirely to all of you and your responses to our call for help.  Tania and Greg have been steadfast friends, giving of themselves and their energy for years to both Sasha and me.  Without them, I would be in hospital or in a state of complete breakdown (I admit I’m not really 39 years old, although that news may shock you deeply), and I just don’t have the energy to do all the things that Tania does for us without complaint.  And our caregivers have become affectionate friends as well as paid helpers.  That’s why I think of us — Sasha and me — as really blessed.

Thank you again, and much love — and talk to you tomorrow or Thursday…

Ann

Ann’s Update: 13 Dec 2010

Dear Patient (I hope) and Loving Friends,

I’ve had a bad head-cold the past two days, and couldn’t even begin to think of writing anything at all on this or any other surface.  In fact, I couldn’t begin to think, period. Today, however, I feel better, having slept a lot, taken much echinachia, some vitamin C, and lots of hot apple cider.  Oh, yes, and bowls of chicken soup, cooked by our wonderful Tibetan care-giver, Chime (pronounced Chimmy or Chim-ay).

Sasha is doing very well, wound-wise.  Another problem has arisen, but thank heaven it’s amenable to several good medicines.  This is a tendency to arise in the night about once an hour, needing — or feeling the need — to pee.  (In case these details offend you, please remember that all males, including kings and presidents, as well as spiritual leaders and alchemists, have prostate glands [usually one each], and they all pee now and then.)  This nightly overdoing of a natural act is, in this case, due to the enlargement of said gland, and this state of affairs can be easily remedied by modern medicine, and will be.  Otherwise, our caregivers, each and every one a semi-saint, will lose too much sleep to retain their good and loving natures, and will eventually fall prey to their Dark-Sides, or collapse.  Or something.

I send you all thanks and more thanks, in the meantime, for your messages and contributions and for taking time, in the midst of the seasonal turmoil, to think of Sasha and me.

Blessings to all of you  ——  Ann