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.

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…

Countdown

As many of you know, at 6 AM on Monday, Agust 10,  I go “under the knife”  for the Direct Brain Stimulation operation— well, more like the drill, sitting up, awake if not wide awake (6 AM at University Hospital in Albuquerque means leaving here before 4 AM, and I don’t think that will be a sleepy night). With luck, the procedure will be done by afternoon; with a little more, I will get to go home early the next morning, shorn of hair but potentially feeling better than I have in years. Maybe I can even type again!

And, despite having to dictate more of it than not to ever- patient Libby, I now have 130 pages and 36, 381 words of a projected 40, 000 words on Hounds of Heaven, my Kazakh- dog- travel book— actually shooting for 45 so I can cut, rolling along, WAY ahead of schedule. Now I just have to hope they keep my memories intact when they rewire my brain.  Think of me on Monday.

Jim Moore in Albuquerque came up with this fine poster:

The book:

And some not so random doggage from it…

Neurology Blog

My post is up at UNM Health Sciences Center Blog. Excerpt:

“It is part of the proper definition of Parkinson’s Disease that
Parkinson’s is a “progressive” neurological disease. As I am a writer
and work with words every day, I know exactly what the sentence means
and why it is phrased that way; it describes the progress of the disease. It is not meant to offend.

“And I still hate the phrase. Parkinson’s is the enemy of progress.
Every day, you lie in bed after waking, wondering if you will have a
good day, a bad day, or be worse; you don’t expect better.”

Read The Whole Thing.

Dr. Sarah Pirio Richardson with Steve Bodio during one of his exams at UNM’s Clinical Neurosciences Center.

Neuro blog post

My blog for the UNM Health Services site should be up soon here— perhaps in a day or two. It begins with my detststion of the term “progressive” as in “progressive disease”:

It is part of the proper definition of PD: Parkinson’s is a
“progressive” neurological disease. as I am a writer and work with words every
day, I know exactly what the sentence means and why it is phrased that way; it
describes the progress of the disease.  It is not meant to offend.

“And I still hate the phrase. Parkinson’s is the enemy of
progress Every day, you lie in bed after waking wondering if you will have a
good day,  a bad day, or be worse; you don’t expect better. When you walk
on one of the days when tremor or rigidity is stronger than usual, “progress”
becomes a measure of how far you can go, how long you can last; this driveway,
that street light. It seems just yesterday that you never measured at all…”
Read the rest at UNM later this week.

Brave Friends and “Progressive” Diseases

As some know, it makes me irrritable when I hear degenerative diseases like Parkinson’s described as “progessive”– only for the disease, as my friend Emily says.

Yet progress still does happen. My friend Dutch Salmon has had our mutual condition for about two years longer than I have, and he has had a hard time of it lately, though I never heard him complain.

When your Parkinson’s gets worse, it is possible to have a battery-powered brain implant that can have good results or even nearly miraculous ones. Yesterday, Dutch’s wife Cherie sent me this report. I will cut to the heart of the matter and past details more of interest to a “Parky” person.

“… we went in this morning and the neurologist tried some different
settings.  There are two wires in his brain and each one has four
electrodes.  Also, during the surgery last week, they tested how much
electricity Dutch could ‘stand’, and it was quite a lot.  There is also
a pulsing setting for each of the electrodes as well as a ‘width’ of the
pulse. So the combination of possibilities if almost endless.  She
started with a low setting and tried first with only one electrode on
each wire, and then two.  Almost immediately, his arms and legs loosened
up from their normal Parkinson’s stiffness.  The tremors in his hands,
always there, even with meds, stopped when she electrified the second
electrode on each wire.  He also quickly noticed more strength in both
of his arms and was able to lift himself out of the chair without any
help.  Bud (he skipped class this morning to go with us) and I noticed
that his voice was stronger and clearer.  The neurologist kept
commenting on how much better his face looked…evidently the muscle
stiffening gives Parkinson’s patients something called the Parkinson’s
‘mask’. I’d never noticed that, but he does look more relaxed now.  We
took a break at that point and walked over to the hospital cafe and had
a cup of coffee.  The difference in his gait was amazing.  His
‘shuffling’ was greatly reduced.  Even his back, twisted from the
secondary dystonia, is much less painful. He noticed the decrease in
back pain last week after the electrode implantation…BEFORE the second
surgery and the electricity was turned on! The dystonia was the one
thing that he was warned might not be improved by the DBS. At best, it
will take the longest (perhaps months) to see improvement.  But the fact
that the pain is decreased is a very good sign.”

There is a big learning curve, and so far, there IS no cure. But modern medicine and science can sometimes make real progress. For anyone whose life is shadowed by a neurological disease it is more than a little comfort that some things can be done to reverse the entropic curve downward, and it should still be a long time before my last day in the field. Thanks to Dutch and Cherie for being both friends and pilots on this strange journey.

Dutch and  me at Owl Bar last season

Libby left with Ataika; me in leather jacket & cowboy hat; Dutch to right with black dog

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.