Monday, March 19, 2018

LIfe and all that

Here are some of the things that have happened in the last two weeks:

Finally, we got an appointment with Dr. Jill Marjama-Lyons, a new neurologist, who came highly recommended. When we got in — she has a long waiting list — she mentioned, as we suspected, that one of the electrodes was in the wrong place in my brain. She had other things that she wanted to discuss with us, and suggested we come in the following Saturday morning before her karate lesson. This involved us getting up and leaving before dawn, but we had little to lose. For one thing, I was now seized up about half the time. She has a lot of Japanese art in her office, and I mentioned my falconry. She asked me if I knew Bodie Littlejohn. When I replied that he was a dear friend, she answered that she had been studying swordsmanship under him. The next morning we got there in time, but having had a long drive and coffee, I couldn’t urinate. She banged impatiently on the door and demanded “Hurry up! I’ve got to get to my karate class. When I got out of the men’s room, she started doing the adjustments while I was still in the wheelchair I had used to get from the bathroom (I HATE wheelchairs!) without my taking the time to get me comfortable.

But I was not bored. First, she did something interesting. She ran each channel out to its “edge” where the charge made me physically uncomfortable and unable to speak. She was apparently mapping the scope of my gizmo. She kept muttering that she would have liked to have done the job herself. When she finished, she told me to come back in a few weeks so she could reprogram the other side. She also confirmed that one of the electrodes was in the wrong place, and told us that all the controls had been switched left to right. We talked (she is also a shrink) about how she might fix this. She spoke to Libby of my being a driven perfectionist who is never satisfied, but I think it takes one to know one!

Three miles from the office, my tight painful legs became loose and I “cleared up”. Except for one sick day (see below) , I have since been free of freezing. Previously I had been frozen about half the day. A half hour on one electrode had done more for me than 2 ½ years of therapy. Afterwards she talked to Libby on the phone and asked if I wanted to try another operation in which she would remove the electrode in the wrong place and put a new one in. Despite more danger, I’m up for it.

Earlier this week, the Wilderson brothers came by with their usual fund of stories and info. I took them by the old Pueblo ruins, John Besse’s, and the bar, rather more social life and outdoor life than I have been used to lately.

I got tired when they were here, and felt sick when they left; I did not know what was going on. I had a bad neuro day, and ended up passed out in the bathroom at 2 AM, raving! I was taken to the ER in Socorro by the ambulance crew, driven by the mayor, where I found out that I had a deep-seated urinary tract infection, probably left over from the hernia operation which has been rife with complications including infections. I suspected something was still wrong, but everyone tried to talk me out of it.

I am now taking antibiotics, am again not freezing, and scheduled to see Dr Jill early (tomorrow!) My old Aplomado has just laid eggs. I sold a bunch of my rare books and am retrofitting the house to make it more Parkinson’s- friendly, with help from friends. Life is interesting.

4 comments:

PeterW. said...

Permit me to offer my admiration for those who suffer profound ill-health, with grace, courage and consideration.

My brother is one of them. You are another..

Anonymous said...

Hi Steev

So glad to hear of your determined progress- "Nil Carborundum". Seems there may be a chink of light in possible changes in treatment - June & I are so pleased for you, and Libby .

My sister who lives entirely alone is housebound, with carers thrice daily , and suffers from Primary Progressive MS, with no real treatment available, so like you she doggedly soldiers on , taking the help she can.

Main problem is she locks up periodically and cannot move, requiring hospitalisation . Like you, it seems that her neurologist has surmised that any undiagnosed urinary infection affected the nervous system, and AB's if applied early enough, sort the problem out.

So keep testing for infection on a preventative, regular basis, old friend, and take the AB's early, rather than later!!

The atmospheric pics make me long to return!

Good luck

John & June

David LaMere said...

Steve,
I just started reading your work (The Hounds of Heaven). It's moving and inspirational.
I'm originally from Quincy MA (I had my ass handed to me in Dorchester once). I have Laika (Altai) from Vladimer Beregovoy and was blown away by Salmon's work on sight hounds in my 20s.
So partly out of a selfish interest in reading your future work,my family will keep you in our prayers in hopes of a complete and transformative recovery.

Shiri Hoshen said...

Steve, I am so glad to read this! Long overdue!
Shiri