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".

One Year Out

It's been a year since I got out of the hospital on Evan's 8th birthday, July 18. We were at Lake Tahoe for his birthday this year. That was a goal, to return to Tahoe, which we missed last year because of my illness. We stayed in bnb Tahoma Meadows, where they have a wheelchair accessible cabin we reserved a few weeks ago.

Back from Tahoe, I contracted my 3rd urinary tract infection in the year since hospitalisation, fortunately not experienced during the trip, and I am on the 2nd antibiotic round (ciprofloxin) after the first medicine (cephalexin) was too strong. The first antibiotic wouldn't let me sleep; I couldn't tell if it was fighting me or the infection, so Dr. Soliman called in another prescription which is hopefully clearing the infection.It makes me too weak to do physical therapy. For 3 weeks I've had this infection.

6 weeks ago I was measured for a custom wheelchair. Sue Sargent even lent me money to try and speed up the process, but I seem to have done everything to derail our order. My PT instructor Shari was out-of-town for the appointment with the chair salesperson, who showed me 2 examples and measured me.A week later, Shari advised against the fixed-frame wheelchair, saying it would limit my leg use, so I revised my plan, looked at other models, and cancelled the TiLite chair that had been ordered. Little did I know that this change would delay the order for weeks.

Meanwhile, Georgetown University Hospital announced that it will hold a trial of the chemotherapy drug Nilotinib on MSA patients. I am trying to find a way to be included in that trial, since I was made aware of Nilotinib, and the positive results it has had on some Parkinsons patients in a GU trial.