Complicated Good News

The terrible thing about Parkinson’s is that it is a one-way ratchet. From the moment the first symptoms start, its advance is slow and relentless, from when you just have a little tremor or lurch and are just about normal. “Progress” has begun. When the slide starts the slope more steeply, you can no longer lie to yourself. The results may keep you up more even than the constant pain and cramps in your leg muscles. You think of old Pope John Paul, the Olympic- class skier of the Tatra Mountains turned into (I KNOW) an amazingly determined old wreck of a hero. You think of two friends of Tim Murphy’s who committed suicide because of their inability to accomplish the smallest task. That water slide on your personal fun ride has something like “All hope abandoned” engraved above the door downstream. I don’t walk well and can barely sleep, my typing is beyond atrocious, and I am in constant pain. Having fun is almost as difficult as working. Sometimes I can’t even read a book. I met one of my sporting heroes,the artist Eldridge Hardie, in Denver last week and couldn’t even stay a half an hour, becaise it was so uncomfortable to sit.

Meanwhile, someone– Walter H?– sent me link to a BBC story titled “First Hints Parkinson’s Can Be Stopped”. “Bayetta” is a synthetic analog of a Gila monster venom that seems to stop Parkinson’s in its tracks. It didn’t seem to reverse the effects. What you have was where you started. But I figure that any time you get off the slide is better than any time later. I do various things — lifting weights (not too much since the guy moved away and the machines left), yoga, and hitting the big bag. I can use these to get myself back in shape if my nerves stop rotting out.

It is a total of three courses, each a month long, using two injections a day. After that, you’re done. So far, experimental subjects have maintained without further treatments.

I’ve been thinking about it while sitting sleepless in my chairs with my thigh muscles spasming. It is an “off- license” drug for PD in the USA, used for type 2 diabetes. A rather Soviet female doctor at the Anschutz clinic in Colorado would not prescribe it; “It’s against the rules! It is for your safety!”

Well, maybe. It has a lot fewer side effects than her favorite, Azilect, an MAO antagonist. I told her I was going to seek a source and she gave me a look of irritation along with (I hope) grudging respect for my stubbornness.

My friend Kirk Hogan at the University of Wisconsin, Madison, physician(anesthesiolologist), scientist (geneticist, anthropologist), gourmand, salmon fisher in Iceland woodcock hunter in Brittany, who met me while he was elk hunting on a friend’s ranch in Catron County, and who studied Colonial literature, our heroes Kipling and Conrad, under Bill Burroughs at the Naropa Institute, came through with information and support. Beth K., a former internist and at one time our brilliant local doctor, who is now living in Austin and says she’d rather run a wildlife refuge than be in medicine, seconded the info, Then our primary care physician, Jenn Phillips, evaluated the information and decided to write us a prescription. My “medical board” is an impressive bunch.

I’m sitting around waiting to get my first shot, because I can’t eat until 30 minutes afterwards. I’m supposed to quit or at least cut back my drinking for a couple of months. I can’t do it cold turkey, because it would probably kill me, but I am resigned to doing it slowly, at least for the three months. That I can’t do it cold turkey is probably reason enough to cut back. a new drug, Extended release Amantadine, is just on general approval to use for suppressing the dyskenesias, the rhythmic movements that I tend to take when my medicine is doing well, and cause Montana, the bartender at the Spur, to say “Turn on the jukebox, so tourists will think Steve is dancin’, and he won’t scare them”, and also the terrible crashes, which within a minute’s time turn my body from an obedient servant to a hulk that cannot sit comfortably in a chair, never mind walk or write. These are the things that hurt and frustrate me most.

Science has now developed drugs to stop Parkinson’s in its tracks and alleviate its worst symptoms. As you get old, your are more and more grateful for negative freedoms. I’m a happy man tonight.

Good news coming!

Despite continuing difficulties with my health, a visit to Santa Fe and a small bequest turned a lot of things around. I may soon have working dictation software (if such a thing is possible!} and a working laptop. I have sold several articles. There is even a glimmer of hope on health, as I strive to get into a Denver clinic to learn how to use my so-called gizmo. Wish me luck. Much more to come when I an less exhausted.

I added more pics to to “Old Days” below.

Update

I can only say things are GOOD- not “perfect”, whatever that means.

In the morning I often feel “normal”, i.e., how I feel I remember from 6 – plus years ago; I often hit a wall by 5 PM. It is not bad, and getting better as we learn how to adjust my machine…

I must learn, as Sarah says: it is a PROCESS,  perhaps un- ending…

Here is a more objective Libby report:

“Steve had the second part of his surgery in which they run the lead wires under the skin and attach them to the “battery”, which is somewhat like a heart pacemaker. Then the next week we went back and Sarah, our wonderful neurologist, turned the contraption on and did the initial programming. They put an electrode in each side of his brain; each one has 8 locations which can be individually turned on and off, and have different amounts of charge delivered. My mathematically challenged brain can’t conceive of how many different combinatioin possibilities this presents — needless to say, it will take some time to work out the best combination to achieve optimum effectiveness.

“At this point, Steve’s dyskinesia is absent, which is wonderful. He is still having troubles with small motor coordination, leg cramps, a very soft voice (this started right after the first surgery) and sometimes his walking. Every day presents something different … sometimes he feels pretty normal, and then a few hours later he hits some mysterious wall and feels awful for several hours. Luckily Sarah is very responsive and can communicate well… when we send her an email she usually gets back within four hours; and remarkably, when we describe what is happening, she knows how to guide us through changing the settings so we don’t have to make a trip to Albuquerque. With our marginal cars that can be a problem in itself. We go back for another office visit at the end of September — we’re keeping a log of what is happening every day to try to discover if there is some pattern to all the ups and downs. “

Actually, better than that- this was written before my last “tweak”.  I am now over 80%, and getting better…

Home at last…

I am home, the op was a success, and I am fine. Many thanks for every good thought and prayer. The battery goes in a week from tomorrow, and the programming a week after that. Only physical effect was a lingering headache where AIR got into my brain… really. The grinding when they drilled into the bone was disconcerting, as was the momentary turning up of my brain current to a high level, which made my face twitch. Luckily, most of the procedure (a word I have learned to use) went smoothly and was completely engrossing to the main…subject?.. who remained awake the whole time, over 4 hours. (Actually Sarah shook me awake  a few times, believe it or not. Anything can be boring if you don’t read…*)

On a more humorous note, it was a hard road for someone vain about his hair to lose it all, so I made a study, feedback encouraged (I think)…

My usual slghtly sardonic self, making fun of what I know will happen…
The holes in my head

The hair, which they SAVED.

My usual Resistol

New Akubra

Best humor, albeit black: our friend “Miranda”, a  blogger and radiation oncologist whose patients are  often dying: “I tell them ‘at least it isn’t brain surgery!’ “

*Reading: when the critic Clive James found out he was dying of leukemia, he thought that with an indefinite “sentence”, he might as well spend the time reading (and writing about it).

And Annie Dillard said that one can speak of an afternoon wasted reading, but no one ever thinks of a LIFE wasted reading…

Still Staggering…

A  reader below, in comments, worries about my current photo. It is a crop from this one of me with Shiri and hounds:

I replied:

“It is part of a cheerful photo of me with a dog– may publish. Health? I
am 65 with Parkinson’s and rheumatoid srthritis, as healthy with those
as I can be. I am in the process of getting an operation that should
diminish the Parkinson’s considerably, but I don’t have any illusions of
youth either…”

If the consensus is that it is too alarming, let me know– I have others!

I am hard at work but shall return.

My home town

… for once, not my long- chosen Querencia of Magdalena, nor a vague gesture to “Boston”, but Easton, the southern Massachusetts town my parents moved us to from a three- decker tenement in  Boston’s blue- collar Dorchester when I was four, and where I lived until I left town at seventeen, After that I returned to hunt Ruffed grouse and Woodcock and occasional duck until perhaps 1987, when an indignant and ignorant suburbanite ran me off land I was legally hunting on. It didn’t seem worth risking my 28 bore or my spaniel, and I was due to fly home to Magdalena anyway. The black and white photos of me below were taken there in about 1976.

Today, Arthur Wilderson was telling us about a delightful old children’s book he had found, with a description of “falconry” with shrikes, in the court of Louis XIII, and that nobody wrote such books anymore. I was suddenly flooded with recollections of reading 19th century books in the dark stacks of the Ames Free library in Easton, and as I thought about  it, I realized that growing up in an almost feudal town where the short- lived Gilded Age architectural genius H H Richardson, grandson of Joseph Priestley and teacher of Louis Sullivan, designed all of the public buildings and many of the more opulent private ones,  where one (quite benign) family owned more than half the land of the second largest (in area, not people) town in the Commonwealth, was not… usual. (We won’t tonight get deeply into the fact that Portuguese had been the second language there, south of the line where towns looked to New Bedford for influence, not Boston, since the 1700’s at least. When I was young I knew old people, Portuguese and “Swamp Yankee”, who had never been to Boston 20 miles north).

I wrote to Arthur and the others: “I loved books like that when I was young (and now of course). I had access to the incredibly endowed town library, built in 1877 and funded by the Ames family, who owned most of the land in Easton (George Plympton, the writer, was a first cousin), designed by Gilded Age architect H H Richardson, filled with 19th and early 20th c books, especially on nature and science, as one family member– Oakes I think– was a great Harvard botanist, who also gave much to the Harvard Museum complex. My parents showed me Kipling, but the Ames Free Library brought me Roy Chapman Andrews, Beebe, original Darwin (they let me into the stacks when my reading ability was established).”

Of course I thought that all kids had such libraries, just as I thought that my weird school, housed in a pseudo- Elizabethan half- timbered mansion on a square mile of woodland, with servants’ quarters, a quarry, and a chapel that had been a ballroom, was normal…

So, some Easton.

The library– the stacks occupied the whole left side and were dark and tall and seemed endless.
This one, probably taken earlier, looks more like  the way I  remember it.

The stacks used to be separated from the bustling take- out section by a carved screen, so you felt privileged if you were one of the scholars who had permission to go there. I suspect that it was easier to give the talkative child a key than to answer all his questions.

 The Hall, about a quarter mile south, where they held High School dances. Yardbird covers and “Mustang Sally” in a Medieval building– never thought it an odd juxtaposition.

The gatehouse for one of the estates, where I fished legally in  a great pond and– well, innocently more or less– poached. The house was a rental and later Betsy and I actually made an inquiry… no surprise, way above our pay grade.

Sorry for the quality of this one– I took a quick shot of it way overhead on the wall above the bedroom door. It is a print of my mother’s architectural watercolor  of Easton’s notable buildings.  Architectural watercolors used to be one of her specialties, before arthritis wrecked her hands. I have one of the island of St Croix somewhere. It is amusing to think thaty AFAIK  every building here (not in actual juxtaposition) is a Richardson.

For later: a glimpse of My Old School (cue Steely Dan). This version by her daughter is from Fran Hamerstrom’s autobiography, because Aldo Leopold’s only protegee (two e’s),  the first female eagler, and, after some mutual bristling (Betsy quoting Oscar Wilde “It is better in friendship to start with a little aversion“),  my friend, was raised in this house eventually sold to to the RCE, a French teaching order. “Those Roman nuns”, to use Fran’s terminology, ran Jeanne d’Arc Academy with great zest and an equestrian statue of Joan of Arc in every room. Fran and I shot our first “scientific specimens” there thirty or so years apart, and  I became their first and  possibly only scholarship student. My own past is an almost- lost different country…

New Project

I am about to start guest blogging on Parkinson’s, I hope more amusingly than not, at the UNM Health Science Center’s new blog .  (My neurologist, who appears above, works there and has encouraged me to write for them). The link goes to Lauren Lewis’s excellent intro; the film above is not a bad intro to Casa Q either. My own post there may be up by the time you read this.