Amazon

Since I am largely wheelchair bound now, the idea  of shopping, of loading into a car, becomes less appealing. I do like to get out and remain active and fit, but any unnecessary voyages out are questioned. Gary's excellent ramps are helping me reach the long- ago-set goal of circling the block each day in the chair while also circling the house with a walker. Shopping online has become easy and, so I will have a largely electronic Christmas. My Department of Shipping and Receiving gives thanks that we will say goodbye to some of the Santa-sending duties, but generally, elves are upbeat about the changes. Thanks to all working the front lines of Christmas 2016.

Peter may receive some vinyl since his 50th birthday present was a turntable, which I could then buy records for as presents in perpetuum. Tom is getting a membership to a beer club, which promises to surprise him with unknown ales for several months. My way of keeping my hand in the refrigerator.

Aptos

Aptos is the beautiful town near Santa Cruz where my wife's family co-owns a beach house. We went there for indigenous Peoples' Day to celebrate Karen's birthday. Michel took the day off to pick us up at San Jose Airport and took us to the Wylie's house, where we got Karen's car and repacked for the short drive to Santa Cruz; it was Friday, so there would be traffic. (The airports were busy, though the plane was sparcely populated. They encouraged us to check the wheelchair at the counter, although we didn't get the message oil we whereat the gate.)

Michael was a great aid all weekend, helping me get to and from a bathroom with limited access each morning and evening. The sunsets in Aptos are like messages from God, whether or not you Believe. Even a concise sunset here can remind the viewer that she's at the end of something, and so reflect more deeply. Evan and Luke had hours of beach play. Kathy Sure and Doug O'Neil stopped by, and Sue Sargent stopped in with son Owen.

The Olympics

The Olympics are an opportunity for anyone to binge-watch television. Someone trapped in a wheelchair is quite susceptible. Good Morning America hosted the morning from the beach in Rio segued right into the games for anyone wanting to watch non-stop.

On first was long-distance bicycling, navigating between the hills along the waterfront. Then we saw beach volleyball and rowing in skulls for 1, 2, 4 and 8 rowers. Water polo got a lot of time early on. Gymnasium volleyball was the most fun to watch, mixing speed and reflexes. Billy Bush was there, riding biplane through the forest and acting out with Winter Olympian Johnny Weir to describe this flamboyant city. Jenna Bush was also there, making it feel like a Bush-family vacation. Somebody owed somebody airtime, in this Bush Entertainment Tonight World, we only live in it.

Swimming was reserved for the evenings, featuring the Michael Phelps Show and Katie Ledecky's amazing performance. Diving, horseback riding, though not at the same time, even synchronized swimming, got airtime. There was something for everyone. Except Billy Bush, who appears to have lost his gig with NBC over fallout from his Trump recording.

Falling

The main enemy has been identified as Falling, and we're doing everything we can to avoid unnecessary falls, especially in bathrooms and other hard surface locations. The first round of falls, all surprises, were about 2 years ago or more, and happened outside of the house. Then, having gotten hip to that attack, I started falling inside, in what had been familiar home territory. No longer safe. The 911 call which sent me to the hospital was viewed as a possible stroke until more recently, when we understand it as a low blood pressure moment so typical of MSA until diagnosed.
   My GP had prescribed midodrine for low blood pressure, but it is more of an automatic drug, raising the BP even when unnecessary, causing BP spikes, while true MSA medicine like Northera has built-in pressure regulation in it, although Northera comes with hypertension warnings.
   We were having water heater problems earlier this year, and I thought I'd go downstairs  to either light the pilot or else the water heater had been already replaced and I wanted to see some of the excellent wood-replacent repair that Gary Smith had done. He replaced the heater after re-glazing the tub and installing grab bars in the bathroom. I thought I'd descend the small staircase outside our house on foot, leaving the walker at the top of the stairs and holding the wall and a railing, overgrown with jade plant, for support. The problem was that, as my balance shifted and I reached out for firmly-planted rail, all I found was jade to grab, which tore away and sent me flying heels over head, down to the bottom, where I fortunately did not stove my head in on a step. There was enough dead plant material and combined with my spin and velocity, I landed crumpled on my shoulder. Try as I might, I couldn't get myself up and had to yell upstairs for help when Pamela returned from walking 20 minutes later.
    Falls have been sporadic, maybe monthly, and of softer landing than before, often controlled when I already realize I'm going down. The new wheelchair has required some getting used to, with a much easier tipping point for falling out of the chair. My balance is crocked and my back feels broken after a year in the hospital-issue Drive chair. I have slid out of the chair while reaching for something and landed with a smack to my head as I keel over forward, but then I also fall into the bedside bookshelf from bed, my lower back is that weak. I should be proud that I haven't had any major falls or broken bones especially now as I enter a phase of the illness where it appears to have taken much of my ability to walk. I must really be careful with transfers and other trial behavior, like reaching. I am better off asking for help, putting on pants say, than tipping to ground while doing it myself.

Prions

Prions are proteins that accumulate in the brain, fold upon themselves and gum things up, causing miscommunication and other dysfunction in diseases like MSA. Prion irregularity has been likened by researchers to Mad Cow Disease, where a sheep-born brain spongeforma infects cow parts (fed sheep remains) and then crosses over into human subjects through consumption of beef products. Seems as likely a way to contract brain spongeforma as any. I don't eat beef, generally, but I did live in Moscow, Russia for 2 months of 1992 and may find myself subject to some bacteriological war during that time. I ate whatever food I was given in Russia.

A more likely cause for the accumulation of prions has been the misfortunate use of nickel-chromium in my dental work. I had a stainless cap (nickel-chromium) from the age of 12, then graduated to a stainless bridge from about age 25 to 35, when I finally had the sense and good advice to pull it out and replace with white gold, after taking a "materials sensitivity test". But the damage had been done, I knew that the stainless equipment leached metal into my body and brain, I saw the aftermath of staining to what was left of my teeth when the bridge replacement was underway. My most recent dentist remarked, after I asked him if I could expect any problems from nickel-chromium toxicity, that there could be "quality of life" issues. MSA is one hell of a quality of life change.

I am excited to hear that they will do a trial into the efficacy of Nilotinib, a chemo drug used on leukemia and thyroid cancers, at Georgetown University Hospital in the near future. They already tried Nilotinib on Parkinsons patients with some good results.

Bradykinesis and The Pisa Effect

Dr. Lisk saw my symptoms of Orthostatic Hypotension (low blood pressure) and Neurogenic Bladder (incontinence due to improper autonomic response) as evidence of MSA, declaring me a posterchild for the disease. He presribed Northera for the OH and for Neurogenic Bladder he prescribed Myrbetriq, which was so expensive that my insurance recommended an alternative, specifically Trospium. both bladder medicines have worked; I did eventually get the OK to try Myrbetriq. Both medicines seem to slow the system, which is already a problem with low blood pressure. It's called bradykinesis, and it describes the slowing down of any system that is meant to move stuff along, like circulation or elimination.

The Myrbetriq or Trospium adds a bit to the slowing effect, so one can sleep through the night, or most of it, without having to get up and use the restroom. And that's what MSA ends up being, a management problem of bathroom visits, diaper changes and medicine administration. I try to keep food and eating as special as possible, but you have to be careful with everything you eat and drink. It's important to drink lots of water, but too much water makes for too much bathroom time. I must be careful about parties and holidays not to eat to much, as that translates into bathroom time and surprises.

Another recent symptom or syndrome involves leaning over or listing to one side called, remarkably like a detective movie, The Pisa Effect. So Parkinson's patients often lean to one side. As a young super8 filmmaker in Italy, my first film was of that tilted tower.

One Year On 2

So it's been about a year since I first heard of MSA, when I had the appointment at Keck and Dr. Daniel Togasaki said he "suspected MSA." I had never heard of i, and so began the long course of learning and denial hat is now my daily routine. I was also fresh out of the hospital for C-DIF infestation, so freeing myslelf of that was big. I was checking in with Facebook at the lime, and learned that friend Shelly Coon's son had also contracted C-DIF in the hospital, andd she recommended the supplement Sachramyces as the best defense against C-DIF, where I had only been given probiotics. So I added the Sacharomyces,which I recenly learned is fungal, and I've kept the C-DIF at bay. I use Jarrow Sacharomyces with FOS, regularly available at Sprouts and Whole Foods.

My Mom jumped in and offered me caregiver support, in the form of several hours of paid caregiving support from agency Home Instead. They sent several young people over to interview for the position, and Christine and Caleb started working soon after. Christine proved herself professional and mature, she was with us 10 months later, loves pizza and ice cream, and has a good sense humor. We got lucky. Caleb was let go after he decided to drive north for Thanksgiving with his family rather than work. We'd enjoyed his company, he had some photographic skills, but Home Instead deemed availability primary. Shannon replaced Caleb and stayed for 8 months.

The second,  or confirming, diagnosis was with Dr. Jerome Lisk, who I had met at the hospital and, at the time, thought I had Pure Autonomic Failure, another balance disorder. On examination, in October or November of 2015, he described me as a "posterchild for MSA".

My GP, Dr. Soliman, who saw me almost everyday at Arcadia Methodist Hospital, including buying the expensive antibiotic CIVICID, which beat back the C-DIF threatening my life, had me on Midodrine and Fludrocourt. But Dr. Lisk got me quickly on Northera, the latest drug for normalizing hypotension in MSA, ans Myrbetriq and Trospium for "neurogenic bladder".