Tag Archives: Paul Abramson

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: 28 Jan 2011

Dear People All over the World, including China, unless the people in China are among those who believe that Tibet is better off as part of China than before they were part of China. Although I don’t wish to alienate any nice people in China, they must understand that I am a devoted admirer of the Dalai Lama and all the people of Tibet who resisted the invasion of Big Brother China.  I would not have expanded on this except for Greg, who always puts my writing onto Caring Bridge and Facebook, and who phoned me today when I was driving in town (without my head set) and asked me (referring to yester– oops — several days ago, when my salutation included the words, “except the people of China,” or something like that), and asked me, “Why?”

My reply was rather scattered, since a corner of my mind was busy trying to identify possible policemen or other law enforcement who might notice that I wasn’t talking into a headset, and subsequently levy upon me a fine of huge proportions.  And they would be right.  I believe in headsets while driving and also while not driving, and I own two of them, but don’t know where they are at the moment.

Since then, I’ve reviewed the part of my brain that contains files called “China and Tibet,” and re-affirmed my strong feelings about that subject.  That’s why you are being subjected to all this.  I’m out of the China closet.  Actually, that used to be (in the late 1800’s) called the China cabinet, but —- Never Mind.

Where was I?

Oh, yes.  Hello, Dear People of Everywhere,

Today was one of the Big Days.  Sasha actually walked all the way to the lab, and took his seat inside, with his caregiver present, and began talking chemistry with Paul, who took some fantastic photos.  Tania joined them at one point, and there is a great picture of all three of them, smiling broadly.

We are (meaning the two girls/women/ladies and I) gradually getting a picture — sort of — of Sasha’s pain problems, the where and the why.  His Achilles tendon and the heel have become almost-perfect examples of superb Western medicine and what can be done by really good Western surgeons.  The original angels are, of course, Drs. Howard Kornfeld and Paul Abramson, who pointed us in the direction of said surgeons.  Without them, we would never have heard of doctors who label themselves “Limb Savers,” and we probably would have lost a foot by now.  And, yes, we all would have lost that foot.

In the evenings, Sasha’s needle pains attack his leg, and they are now being understood as the results of the peripheral neuropathy, and he’ll probably continue having that problem.  We’ll do our best to make him as healthy as possible by means of diet (fresh fruits and veggies, protein, vitamins, etc.) as well as exercise.  Following the advice of a very wise person, we’re giving him goat’s milk and Basmati rice, and these do actually help reduce swelling in his feet, which is a real concern.  But we’re all still learning.  Every night is a bit different.  When he can be persuaded to stay in bed most of the night, the foot swelling is gone by morning.  When his pain makes it necessary for him to sleep in the Lazyboy chair, the swelling is still present when he wakes up.  But all of it is getting better.

Sasha’ mental state seems to have improved during the day, since he came home from hospital, but the “sundowning” is almost always present, to some extent, by the time evening comes.  His chemical knowledge is still there, though, and now that he can work in the lab with Paul, it will probably sharpen and improve, along with his analytical ability and other aspects of his mental functioning.  But he can’t be left alone, because there’s too much risk of falling, among other things.  So we continue to fund-raise, because we’ll need 24-hour a day help for the rest of Sasha’s life.  So far, as I’ve said many times, we’ve been amazingly lucky in our caregivers, with perhaps a single exception, but we’re busy taking care of that exception.  We seem to have attracted really lovely human beings — funny and caring and patient — and may it continue to be so.  With Tania and Greg as our right and left arms, all we can do is give thanks (and feed them all Basmati rice).

For the moment, this is all.  When Greg returns from his mother’s funeral, I’ll write more.

Love and thanks to all of you.  Sleep well and dream in color (unless you don’t want to).    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: 3 Jan 2011

Dear Friends,

Finally, we have the really great news we’ve been waiting for!  Sasha’s left foot has been encased in a wound vac. for five days, and yesterday, on the fifth day, the vascular surgeon, a terrific man named Dr. Parrett, took the vacuum off and examined the graft site.  He said it had taken, hooray and Amen.  Until now, we had not been able to dismiss completely the possibility of amputation, but this tells us that (at least, for the foreseeable future), the foot will remain with the rest of Sasha’s bod.  And, thank heaven, Sasha can come home on Wednesday!

This particular hospital experience has not been without problems.  We never did get a private room, due to the patient overload, but for the most part, the other room-mates have been nice people, so that isn’t a complaint. The nurses are mostly very nice and pleasant and helpful, with a few inevitable exceptions, who made things a bit difficult for our caregivers, probably not realizing that we have a really good relationship with our three caregivers and that they tell us everything that goes on when we aren’t there.  Including what certain nurses say about a lot of things in our absence that they did not — and would not — say when we’re there.  A lot of funny stuff, nit-picky stuff, goes on in hospitals as it does everywhere else, but small things get magnified in the minds of patients and their families, because we’re all helpless without good nurses, and there’s a lot of anxiety running around inside us when someone we love is sick and we can’t make them well by ourselves.

All of this rescuing of Sasha’s foot would not have happened without our new primary care physician (also known as the “family doctor”), who knew the right surgeons to send us to, and spends more time with us every time he visits than any other doctor I’ve ever known.  Not fifteen minutes, but usually a full hour!  He was introduced to us by a dear friend, an addiction and pain specialist named Howard (I’ll write his full name when he gives me permission), when our long-time family doctor left to open a clinic in New Orleans.  This new doctor, Paul Abramson, is a member of The Tribe, and living proof that the universe is occasionally kind and compassionate, despite what might be described as overwhelming evidence to the contrary.  The only negative (which we are going to accept willingly) is that his office is in San Francisco, a near-hour’s drive from our home. Dr. Paul has empathy, intelligence, humor, and loves challenges.  And Sasha’s foot has been quite a challenge, witness the fact that the doctors in the Wound Care Center, where we took Sasha for many months, simply did not see the point of trying to avoid amputation, and thought we were wasting time and money in trying to keep his body intact. A certain lack of imagination, one might say.  They are good doctors, but imaginative they are not.  So I’m saying here, in front of God and all the Little Gods, that we are immensely grateful to Dr. Howard, who led us to Dr. Paul, who led us to Dr. Parrett, who led us to a successful skin graft.

Now, we are going to have to raise enough money to pay for round-the-clock caregivers for Sasha, for what may be years, since that magnificent mind has lost its ability to remember anything that didn’t happen many years ago.  Arteriosclerosis, hardening of the arteries, is the cause, and the only bright spot in this rather sad picture is that Sasha’s true personality — optimistic, pun-loving, people-loving and chemistry-loving — is intact and shining brightly (unless he’s in pain, and we hope that will be an infrequent problem from here on), and when he moves back to the lab, with Paul, our chemist friend and Sasha’s co-author on the Shulgin Index, he’ll be happy again, because he still remembers most of his chemistry, and we hope that will continue for a long, long time.

And the Shulgin Index is off to the printer, thanks mainly to Wendy, my wonderful daughter, who said (something like), “No more!  No more!  It’s finished.  We are sending it out into the big, wide world NOW!”  At which point all the exhausted co-authors (Paul Daley and Tania Manning) cried out in unison (sort of): “Free At Last!  Free At Last!  Thank Wendy Awlmighty, Free At Last!”

Love and Blessings —   Ann