Wednesday, August 30, 2017

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.

9 comments:

On a Wing and a Whim said...

That's awesome! Glad to hear you've got friends who've got your back.

Mark Farrell-Churchill said...

Thinking 'bout you, Steve. Keep fighting the good fight. With affection from Mark & Jessa.

Old Gunkie in Wyoming said...

So glad to hear you're able to get on this new therapy! Steve, you're an inspiration to me in so many ways. Keeping my fingers crossed.

Best,
Jim

Ted Schefelbein said...

Good luck, Steve, I hope the new drug/treatment leaves you better. Getting old is not for sissies.
Ted Schefelbein

Matthew Mullenix said...

This sounds encouraging Steve!

Anonymous said...

Glad to hear there is a possible new therapy that might help Steve, you deserve a break, and June and I are gunning for you both - Go for it my friend ......

Larry South Dakota said...

You are such a fine writer. I went online to see if another book was out and discovered your Parkinsons So sorry. I am not in the healing professions and law is no help. But some prayers are worth a try so I said some for you Larry in South Dakota

Henry Kwiecinski said...

We don't know each other but I have enjoyed your work for years. I am glad to hear (read?) that your are getting something to lessen your dis comfort. Good Luck Henry

Anonymous said...

HECK YEAH! GO for it, man! I'll send as much good joo-joo as I can muster yer way to assist! And if, after the shots, you feel like eating baby birds or rodents raw, then crawling under a rock to digest, just consider that the "new normal"!....L.B.