Tag Archives: neuropathy

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: 15 Jan 2011

Dear Everyone,

Sasha is doing well, and would be doing even better if it weren’t for a “blister” on his left heel.  You could call it the possible beginning of another ulcer, but we don’t want to go there.  The doctors and nurses call it a pressure blister, and we’re trying to get him to remember, every time he gets up to walk a bit (he’s supposed to do that about every hour — with a helper beside him) to walk on the ball of  his foot and not the heel.  It’s not too hard for him to get the message, since the heel hurts severely every time it’s touched.  It’s tempting to think things like, “Why is there always some new ulcer or skin breakdown; why doesn’t all of it go away, now that the skin graft is  successful?”  But the fact is, he’ s still got the peripheral neuropathy, and probably always will have.  Which means, it’s going to be hard to get him completely off pain meds, because there’s always some nerve twanging away, especially at night.  The only reason — for me — to want him off pain meds is that only then can he have red wine again — even just a single glass.  And that is, or was, his favorite drug, his drug of choice, and I hate to see him go through the rest of his years without enjoying it again.  We’ll figure something out.

Since coming home, my impression is that Sasha has had somewhat less “sundowning” than before. Maybe I’m just imagining it.  He certainly does have evenings when reality is definitely — ah — altered. Not a good trip, either; it’s usually associated with some anxiety, such as trying over and over to treat his small television monitor like a computer, and wondering why he can’t find the mouse OR the keyboard.  But I’ve noticed that there are now some evenings without sundowning, or at least with a minimal amount of it.  There’s no question that being home is better than being in hospital, for anyone, but particularly people with mild dementia.  They need familiar faces and things around them, and any place not-home is disorienting.  He goes to the doctor without trouble, because he’s with familiar, loving faces, people who know what’s going on, and he knows he doesn’t have to decide anything or fix anything or do anything worrisome.  And the visit to the doctor’s office is relatively short.  Before you know it, he’s headed home again.

This leads me to thoughts of Burning Man and other places in the world that I’d enjoy seeing again (or, in the case of Burning Man, enduring/surviving again).  If someone offered to lend us a nice-sized RV and pay our way to BM, I would be tempted to say Yes!  Yes!  (and Thank You, of course), but then I would have to sit down and do some thinking.  We couldn’t do it without a care-giver, of course, because Sasha can’t be left alone.  And even the most devoted care-giver would need time off.  Okay, then, two care-givers.  Since they would be together in the RV, they would have to like each other and get along very well.  (Maybe we change the description of the RV from nice-sized to HUGE! )  Could I be the second care-giver?  Yes, I could.  But my months of being just that, last year, taught me how exhausted I can get in a rather short time.  Not only am I no longer young, I have a very bad back.  I also need ten hours of sleep, while Sasha needs about six hours.

What about the many wonderful volunteers who have offered to help take care of Sasha now and then?  Well, that sounds great, but my man needs — as I said before — familiar faces around him, especially at times when intimacy is unavoidable (peeing, etc.).  Above all, there is the possibility of something physical going wrong, like another stroke, when medical treatment is vital within the first few hours, to prevent disaster or death.  Burning Man is not the place to take that kind of chance.

(Sigh.)  Well, we don’t know how things will develop within the next months or years.  Sasha’s body has always been amazingly strong, and his mind has been one of the world’s best.  Maybe ——- maybe.  We’ll see.

This has been a lot of speculation, but that’s what came out today, and that’s what I shared with you.

I’ll tell you more about what’s going on within the next few days.  The weather in the Bay Area is predicted to be dry and sunny and a bit less cold for the next week, so enjoy the sunlight and have a lovely weekend.

Love and Blessings to all of you — 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