(Like so many pieces of laundry, morning thoughts aren’t usually organized.)
JULY 26 – 31, 2019
Living with Parkinson’s
Phyllis & Sam Turner ©2019
ALOHA: Adult Loss of Hearing Association
APDA: American Parkinson Disease Association
BBC: Bisbee Breakfast Club
BSC: Bristol Stool Chart
CH: Cynthia Holmes, Ph.D. Neurology
CPAP: Continuous Positive Airway Pressure mask (for Sleep Apnea).
DBS: Deep Brain Stimulation (much improved since Michael J. Fox!)
HEH: Happily Ever After!
HOH: Hard of Hearing
HS: Harvey Stanbrough Pro-writer and mentor (http://harveystanbrough.com)
IBS: Irritable Bowel Syndrome (often associated with PD)
MJFF: Michael J. Fox Foundation
PSG: Parkinson’s Support Group(s)
PD: Parkinson’s Disease
PMD: PARKINSON & Movement Disorder Alliance
P.J.: Phyllis – my wife: SWOMBO (She-Who-Must-Be-Obeyed) A contributor and #1 editor.
PT: Personal trainer Tresha, including daily in-home exercise assignments for PD
TC: Tai Chi Chuan for balance and body health once a week
TCF: The Compassionate Friends (For parents who have experienced the death of a child or sibling.)
WIP: Work in Progress (32º North) Writing is my vacation!
YISKA: Navajo for Darkness has passed. (Also the name of a Navajo Sheepdog who barks in Navajo!)
07.26.19: 1200 noon: Sent out Maytag Moments. Long this time. I ended realizing we hadn’t sent out Christmas letters. It’s July. So are we Late, or Early for next year? We did this once before when we were at Orne Ranch. But we only had two children then.
From Sam McClung
Jul 26, 2019, 5:36 PM (13 hours ago)
This past week I spent many hours completing my spot in a large genetic study of Parkinson’s Disease. From what I have read about PD, 15% of patients get the disease because they carry a gene for it. Since I know of no one on either side of the family that has had PD, mine probably is not the inheritable type. Some of you I am sure just went back and reread the paragraph, and then let out a sigh of relief. My PD is probably among the 85% that is environmentally caused by a genetic mutation.
I can play the guessing game. Was it from the two concussions I have had? Once while sledding in sixth grade in Rocky River, I lost control of my sled and slammed into a tree. At this point, I remember nothing but never blacked-out. Mom and dad didn’t take me to the emergency room until hours later because I kept asking questions such as “what day is it” and “what was I doing to get hurt?” And by the way, the surprise was that I had a broken wrist as well. I remember nothing to his day until I “came to” in the ER. I was never unconscious, but I can’t remember the hours in between. I walked and talked, but was confused and concussed.
The second concussion was returning home from a final exam at UGA on a dark and rainy night. As I was nearing the turn into the trailer park where I lived and went to take a right turn bend in the road, my VW bug went straight, spinning 180 degrees, struck a tree rear end first. True to Newton’s Laws of motion, what was in motion stayed in motion, me, now flying backward breaking the back of the seat, sliding under my now useless seat belt and shoulder harness, and having my head meet the object that arrested my motion, the roof of the car. From here I remember nothing, but apparently, I got out of the car and walked home which wasn’t far, and found my two roommates, Dusty and Glynn, at home. I told them about the accident and called the police to report it. Upon arriving and interviewing me, the police, based upon my concussed behavior, believed me to be under the influence of something. They had me do a breathalyzer and drew blood. They hauled me down to the station. Good roommates that they were, Dusty and Glynn, followed us to the station where they finally convinced law enforcement to release me so they could take me to the emergency room. And it is there I begin remembering things.
Let me interrupt this PD story with a quick acknowledgment of understanding how important today concussion protocols are. Neither time did I lose consciousness, and I did many things correctly. But each time I was enough out of it for someone to recognize there was something wrong. I am all for holding someone back if there is the possibility of a concussion.
So, did my PD start with concussions?
How about when I was young in Rockdale, Texas, and they were fogging the neighborhood with DDT?
How many times did I use Round-Up?
Concussions and chemicals are believed to be the primary ways the environment mutates genes for PD. Another is well water. Another is breathing manganese dust.
In this genetic study, I will get a free 23AndMe package and send in my DNA sample. From there, researchers will add my sample to 27,000 other PD patients, looking for ways to identify genes that can be environmentally influenced and cause PD.
To qualify, I had to have PD and answer 18 categories of questions, some having one question, some having up to 30 questions in the category.
I will get the usual 23Andme feedback, but there is no promise of any individual study data that I will receive.
We shall see.
Sam/Dad/Grandpa Sam McClung
6:45 AM (1 minute ago)
to AA, BEKAH, Sam, bcc: Margaret, bcc: Cynthia, bcc: Cynthia, bcc: Karen, bcc: mm
This is so pertinent to many people’s lives. I missed that genetic study because of computer glitches on this end. When I was 10 or 11 years old, I was accidentally hit on the head by a falling 2 x 4. I remember seeing stars or lights flashing, but I continued playing with my friends. There was no visible blood. I must’ve told my parents. I don’t remember that I was checked at all by them. Maybe they looked for bruises. I certainly didn’t go to the doctor.
Your story causes me to wonder. As far as I know, there is no history of PD in my family. I see my neurologist on Monday, and I’ll mention this. Thank you so much for sharing.
How about starting this Maytag Moment with a bang?!?
This next entry relates (sort of): As you know, I’ve been reading EDUCATED by Tara Westover, a memoir. Because of her family’s religious convictions, she missed medical treatment and formal school until she was 18. Enough said. Read the book.
YISKA! and tassels on the corn! Corn that we didn’t plant! Everything else is gone because of quail which have taken up residence in our back garden. Well, not everything. They haven’t hit the peach tree yet. or the sunflower.
PJ and I ran errands back and forth for items we forgot to do, yesterday,
1700: I finished EDUCATED by Tara Westover, a Memoir. Intensive writing.Practiced shooting in the backyard for twenty minutes. Grouping is tighter but “no cigar.” I’ll return it to Sandra S. on Sunday.
07.28.19: 0630: Been up for an hour. Only 82º this morning. It may get up to 108 today. One appreciates the A/C.
My IBguard (medication) is working effectively. Took my D-Rabose in my old shot glass this morning. Shot glass: ah…fond memories. But that was in another life. (when I was testing the twenty best scotches) The contents are different, too. Better for me as the leg cramp/hamstring has lessened.
07.29.19: 0500: Parkinson’s: I can hardly get out of bed this morning the pain in my left leg is almost overpowering. It hurt to get up; it hurt to sit down. I must’ve twisted wrong last night because I lost my night bag at about 1 o’clock. Had to get up three times to pee. I’m using Dragon more this morning because my hands are stiff. I could hardly walk from the bed to the bathroom. When I made it to the kitchen, I immediately took a Bayer aspirin and the rest of my meds, including the IBguard.
Question: Do I really have a strained hamstring; or is this part of Parkinson’s? (It’s been two weeks now.) I followed Tresha’s advice and did my exercises each morning and sometimes in the evenings when I felt I needed it.
I should find out this afternoon with my appointment with Dr. Anderson. I don’t remember any activity that would have strained just my left leg. I don’t believe that it is because of my archery posture. At least, I don’t want to believe that.
Treesa Benton, Executive Director of Uncle Bo’s Beef Jerky Products, meets with Sam and PJ to discuss expansion.
07.29.19 (continued…)1500: Met with Dr. Anderson. Good news! No visible changes in my PD. Keep up the exercise, keep on the diet, continue what I’m doing. No additional medication needed at this time. The left leg is probably the hamstring and/or synaptic nerve. Keep taking relaxants and exercise. Check again in six months. And, if there are any unusual changes, contact him right away
1800: Archery League: Shot 176 I improved during the last five ends managing to hit one 10+. But most ends were in the teens. Ah, well. I’ll practice again today.
Goal: break 250.
07.30.19: 0500: Awoke this morning with no hip pain! I’m aware of the hip throughout the day, but the pain has subsided. Ran errand to Church, dropped off my hearing aid at Costco for repair,
1200 – 1400: ALOHA meeting on hearing concerns. 1500: watched three hours of MJFF video clips on aspects of PD. Gonna’ fix dinner, now.
07.31.19: 0730: Thigh pain came back with a vengeance. Exercise and stretching gave minimal relief. 1130: shot 36 arrows practicing at the club. Hard to lean on my left leg.
07.31.19: Twenty minutes: Two inches of rain. Almost tornado type wind. Paseo San Andres was running curb to curb. Then it cleared. We had dinner at Culver’s. We drove across the bridge where there was a heavy amount of run-off in the Pantano.