(Like so many pieces of laundry, morning thoughts aren’t usually organized.)
JULY 16 – 26, 2019
Living with Parkinson’s
Phyllis & Sam Turner ©2019
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) I write every chance I get. Writing is my vacation!
YISKA: Navajo for Darkness has passed. (Also the name of a Navajo Sheepdog who barks in Navajo!)
MONSOON? Almost but not yet.
07.16.19: 0830: Type #4 (refer to the BSC) Left thigh has been bothering me for the past two days. Leg stretches help a little. Am I sitting wrong? Or sitting too long? (I get up about every 15 minutes walk around and sit again.) Standing wrong? Eating wrong? I’ll see Tresha in the morning. Maybe she can answer some of these questions.
1100: Type #4 (BSC) Had vegetables and pork tenderloin and spaghetti squash for dinner. Plenty of fiber.
07.17.19: 0500: Type #1 severe. What happened? What caused this? I lost about four hours sleep this morning because of my left leg cramping. Would that have anything to do with constipation? (no) A blood clot, maybe?(NO) Turns out it is a stressed hamstring.
Parkinson’s support group yesterday (14 present) talked about:
- Medications that worked and didn’t work.
- The accessibility of their doctor or their doctor’s nurses.
- Which doctors were trained, movement specialist.
- When a surgery goes wrong.
Today’s plan: I will practice archery at the club for at least an hour. It’s cloudy, and only 82° I’ll also shoot for 10 or 15 minutes this morning.
Tresha took the three pictures of me stretching my hamstring. Here she is (below) demonstrating another way to relax the muscles.I don’t think I’ll be doing this anytime soon. I feel better. Now, I’m sitting (typing) with a tennis ball under my hip.
Back to the PARKINSON’S support group yesterday. Muscles just aren’t as flexible as they used to be. PD can tighten these muscles up to the point of severe discomfort. Had a concert violinist present for the first time. She can still play, but some bow movements are too difficult to manage.
I notice that the members listen intently. This is partly because many of the Parkinson’s people are speaking softer. Many take speech therapy partially to improve their volume and enunciation. The other reason they listen to the circle group is that it may be happening to them soon. Sort of like previews of coming attractions. Once we complete introductions around the circle, the group splits up with the caregivers (that maybe spouses or a relative) going into a separate room to have their own discussions.
One member had a medical treatment that went wrong. The specialists doing the surgery goofed up, they injected the medication in his stomach instead of the intestines. He is understandably afraid to have any additional treatments.
Just to refresh you, here is Mayo Clinic’s list of some of the most prevalent symptoms:
Parkinson’s signs and symptoms may include:
- Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may a rub your thumb and forefinger back-and-forth, known as a pill-rolling tremor. Your hand may tremor when it’s at rest.
- Slowed movement (bradykinesia). Over time, Parkinson’s disease may slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk. It may be difficult to get out of a chair. You may drag your feet as you try to walk.
- Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can be painful and limit your range of motion.
- Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.
- Loss of automatic movements. You may have a decreased ability to perform unconscious movements, including blinking, smiling, or swinging your arms when you walk.
- Speech changes. You may speak softly, quickly, slur, or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
- Writing changes. It may become hard to write. Your writing may appear small. (In my case it is illegible.)
I have a few of these symptoms (underlined) but not all. The progress is (or can be) very slow.
I drove to the club and shot 36 arrows. It took me about 55 minutes to finish the shooting. Unlike a bowling alley, where the ball rolls back to your side, after three arrows, I must walk to the target, pull the arrows, and walk back. (getting steps, of course.) I know: I’ve mentioned this before, but it’s what I’m thinking about at the moment. Margaret Ann and Tim walk the La Posada loop for exercise. Sam gets some of his by walking, back and forth with arrows. Not as picturesque as the loop, but it’s exciting to see the score. Some archers use binoculars to see the results after their section shoots. They still have to walk up and pull their arrows. At 20 yards, I can’t see where the arrows hit (even with my glasses on). But I can see the yellow bull’s eye! That’s what I aim for. It’s always a pleasant surprise when I walk up and see one or two arrows in the yellow or red. (I’ve never had all three in yet. But I will one of these times.)
07.18.19:0500: Did the laundry getting ready for the cleaning team who will arrive at 0800. They should be finished by 1100, just before the United Health nurse come to give us our annual check. WRONG! The clean team called and won’t be here until 1200! We took advantage of this schedule change, and drove to Tuller Trophy to place an order for some Memorial tags to go on various musical instruments for St. Francis in the Foothills United Methodist Church all donated in the name of our son Robert Eric Turner. Next, we went to Walgreens. (We are practically on a first-name basis with the pharmacists.) We straightened out a prescription order between our doctor and the pharmacist. I think it’s all taken care of now.
We got the bed sheets on the line early this morning in preparation for the cleaners to come in and make the bed.
1300: I shot sixty arrows at the club. I’m getting tighter. Notice all of the other holes that I had to shoot before I got these centered. No one else has used this target. If the arrow touches the inside line, it counts.
This score is 28/30 The center circle is a + which I’ve hit one time. That counts as a 10+ In competition the + counts in the event of a tie. Yeah, the left arrow looks like it might be touching the line, but I’m counting it as a nine. As long as they are all in yellow, I’m happy (for the time being).
I don’t know what happened to the rest of the afternoon.
07.19.19:1100: We picked up Rachael this morning so PJ could take her shopping. We will attend Sabrina’s comedy play this evening. The play is called I HATE SHAKESPEARE! Julie picks us up at 1600 hrs. It’s a good thing I shot Monday to put that score in the bank to make up for this Friday. I shouldn’t have any more interruptions in schedules for Friday’s after tonight.
SABRINA as JULIET in Steph DeFerie’s play, I HATE SHAKESPEARE!
Julie drove us across town to the Green Fields Country School where Sabrina has been taking a three-week workshop in comedy acting. She started acting when she was six years old. If you have been with us through Maytag moments since then, you know that she’s been in two plays a year at The Gaslight Youth Theater plus extra workshops. Her experience shows up on the stage. Even without microphones her voice projects across the audience. For people who are HOH, this helps us understand what’s going on.
Yeah, this is her grandfather talking, and of course, I am biased, but this young lady may have a career in acting. Her grandmother and I suspect that she will be successful in any endeavor that she chooses. I think Julie and Chris, her parents, would agree.
This from Margaret Ann who lives in La Posada in Green Valley. She keeps a weekly journal (And Furthermore…) A Journal of Late-Life Adaptations: You can read and/or subscribe to her journal (Free) at firstname.lastname@example.org
TUESDAY I met Lindley at 6:45 am, and we walked to Java and back so I could treat her to belated birthday ice cream, but somehow that got turned around, so she was treating me. I can tell you ice cream is as good at 7 o’clock am as in the afternoon.
Margaret Ann: There are many successes throughout your week even without your word files. You walked to two different points on the campus. (I believe that’s called exercise.) Plus you did in-depth research on the quality of ice cream at 7 AM versus evening desserts. Your conclusion? Ice cream is as good at seven in the morning as it is in the late evening. I would call that a successful week. Speaking of ice cream, after Sabrina’s play last evening, we stopped at a Dairy Queen, and I had a banana milkshake. Having dairy products, particularly ice cream late in the evening, can cause all kinds of problems for someone with IBS.
I’m happy to announce that I survived the night and seem to be operating at a normal level MCXXV in the morning. (The Roman numerals were not of my doing. That’s Dragon’s response.) Rather than change it, I thought I’d leave it just to let you know what I’m dealing with.
1400: I spent fifty minutes practicing at the Club. Arrows are getting tighter. Found out Kent will be my partner for the rest of the league shoot. This guy shoots in the 290’s plus, consistently. Both our scores are combined for average. That gives me a real challenge to keep up with him. I intend to do that.
07.21.19: Our friend, Sandra S., loaned me her hard copy of EDUCATED a Memoir by Tara Westover. Just reading the prologue hooked me. For you who enjoy reading, look this one up. It is a page-turner.
1330: I’m not one to take pain medicine very often. But, even with the gentle stretching exercises, my left leg still gives me pain. On P.J.’s advice, I took two 500 mg/Pain Reliever Acetaminophen tablets and rested for an hour and a half. I feel a little better.
I spent the evening reading Westover’s memoir. Favoring the left leg. Took a pain reliever at 2100, and slept until 0230. Took another at 0300.
07.22.19: 0530: Stretching gently. Difficulty putting weight on the left leg.
0700: Took a tablet. Shot 30 arrows before breakfast. Drove PJ to two doctor appts. this afternoon. Turns out one of the appointments was for me! I have to adjust my meds slightly. PJ’s shoulder doctor said he wanted to see her in a year and a half. That’s good news. Dr. Kersey was double booked all day, which meant that we didn’t leave his office until 1745! I was due to shoot at the League by 1800 hrs. His office is only two miles from home. I rushed PJ home, loaded my equipment into the Matrix, and made it to the Club. (I had a food bar for dinner.) The good news is that I broke 200 for the first time. (Drum roll) I shot 207/300. I even got two +’s. (dead center) Next goal is to break 250/300. No tremors in either hand. Left leg feels better.
07.23.19: 0500: 80º My rain gage showed traces of rain.
Quail Run Writers this morning. PJ and Sam presented a piece about a TrailManor they owned many years ago back when we were teaching astronomy.
Pauletta wrote a “creative” non-fiction piece about Homelessness.
Flo presented the piece called What’s Trash to Starbucks. (I didn’t know that used coffee grounds can be converted into stretch pants and clothing for runners. Just think: You can wear your coffee to work instead of drinking it. Sundried is one brand. They didn’t say whether their shirts were regular or decaf.
Bev: had us guessing what was going to happen to the two main characters. Since she is “writing into the dark,” she doesn’t know, either.
Harvey Stanbrough (email@example.com) arises and greets the morning by 0230 or 0300. That’s when he starts his day. He wants to know what routine some of his readers have.
I usually get up around 0230 or 0300. But, because of my incontinence… (Ahem!). My writing day starts, as noted in this journal. Usually there’s a list on the kitchen counter showing the plans for the day. Of course, they’re subject to change by the morning, but at least we know what we were thinking about last night.
1830: Shot 18 arrows in practice. Tighter but to the right. PJ observed. She can see where the arrows hit better than I can. I can’t sit in any chair for more than ten minutes. Took another pain pill. 2100: To bed.
07.24.19: 0500: This is the one-year anniversary of my PD diagnosis. Up and ready for exercise at Desert Sports. Tresha had me doing some soft stretching that helped my leg. We watched the Robert Mueller report from 1000 on. I kept moving around to flex my thigh. No archery practice today because of the leg. I’m taking IBguard and Acetaminophen (500 mg) to attempt to control constipation and diarrhea. So far, not too successful. I was supposed to go to the Parkinson’s lecture today at 1400hrs, but I knew I wouldn’t be able to sit very long. Sorry, Cynthia Holmes, Ph.D. We’ll see you next month.
07.25.19: 0500: Reviewing my journal, and thinking about Harvey’s day of writing, I realize that my writing does not often mention my Work in Progress.
The subject today is FOCUS. Maybe I should include distraction in that subject line.
So what happened to my WIP this last month? I dumped 60 pages, agreeing with SWOMBO who said it was boring. I admit that I’m not focused on the story.
Instead, I’m focused on putting three arrows in the yellow on that crazy target. And while this leg is truly a distraction, the choice is to write and be in pain or stand up and shoot with less pain. When I’m standing, my leg doesn’t hurt. (much) When I’m shooting, I’m focused on centering the arrow on the target. I’m not thinking about Ayasha or Kenneth and what they might be doing in their old CCC lodge on Mount Lemmon. (Sorry Ayasha, but I’ll get back to you after League in a few more weeks.)
My break time is filled with reading, minimal TV -PBS news, or ABC with David Muir -doctor appointments, running various errands to get things that we forgot the last time we were out, and PD events, and Archery practice. Another distraction that I look forward to is taking my bride out to breakfast, lunch, or dinner, depending on the mood and the need for a variety of food. She supervised my making a tuna/egg salad a couple of days ago. I enjoyed doing that. The next day, she turned around and made a turkey and egg salad. So we’re not going out every day. 1330: Practiced archery for an hour. I was fortunate to have my coach there. Larry congratulated me on my shooting Monday night. Apparently, the way the scoring went with my 207 next to Kent’s score which was higher it put as well over the max of 300. Larry adjusted my sight for me. I still shot high in practice today and scattered. Gotta keep my right arm back elbow in line with the arrow and follow through. I know this. I must’ve been tired. I was shooting all over the target even with this sight adjustment. Tomorrow’s shooting will be “for fun” and no score.
Don’t know if this will work. Don’t know how many of you have joined the Michael J. Fox Foundation even if just for information. It’s worth perusing the list. This is for early-onset Parkinson’s (younger than 50 years) Good luck.
I have more to tell you, but I’ll save it for next time. Thanks for your responses. Thanks to all of you who are following this adventure.
PS: Just realized that we didn’t send out Christmas letters! I’ll work on that, maybe tomorrow.