(Like so many pieces of laundry, morning thoughts aren’t usually organized.)
September 4-8, 2019
Living with Parkinson’s
Sam & Phyllis Turner ©2019
ALOHA: Adult Loss of Hearing Association
APDA: American Parkinson Disease Association
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
NAMASTE: The Spirit within me honors the Spirit within you.
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
RWA: Romance Writers of America
TAODW: The Art of Dying Well-A practical Guide to a Good End of Life, by Katy Butler
TCF: The Compassionate Friends (For parents who have experienced the death of a child or sibling.)
WIP: Work in Progress (Hiker Man) or (32º North) Title undecided. Writing is my vacation!
YISKA: Navajo for Darkness has passed. (Also the name of a Navajo Border Collie who barks in Navajo!)
09.01.19: 0545: RABBIT! and YISKA! You did remember, didn’t you?
Last evening, this cloud over Al’s house across the street promised an exciting evening of lightning, thunder, but no rain on our Paseo San Andres. Those of you who know Tucson can understand. Sometimes it rains on one side of the street but not the other. It’s crystal clear this morning with no sign of clouds that I can see out my office window.
1430: I’m exploring the world of Lyft. (like Uber) We will use it on trips downtown as needed.
WE GET LETTERS:
From Carolyn O.: Good seeing pictures of you two enjoying friends and a good meal. My grandkids are back in school and lots of activities. Take good care of each other. Thanks, Carolyn. Good seeing your pictures, too. Yes. Friends are precious.
I’ve been researching on PD today. I got this illuminating letter from Sam McClung about Linda Ronstadt’s experience with Parkinson’s.
From: Sam McClung: Below is an article from the New Yorker Magazine by Michael Schulman taken from the online New York Times email from Saturday, August 31, 2001. It is very long, so I have only forwarded parts that pertain to PD. If you want the whole article, let me know, and I will forward it to you.
Over the last year, I have randomly collected the names of people that have PD or had while alive if no longer living, such as Mohammed Ali. Everyone knows Michael J. Fox. His name is synonymous with PD because of his leadership and philanthropy. Other memorable names for me are Kirt Gipson (LA Dodgers fist-pumping HR to beat the Yankees), Alan Alda (M*A*S*H), John Havlicek (do I need to say anything?), Robin Williams, and Neil Diamond. Somehow I find it comforting to know I share the challenge of PD with these notables.
The article is about Linda Ronstadt who grew up in Tucson and whose family has spent generations in southern Arizona.
The New Yorker Interview
Linda Ronstadt Has Found Another Voice
The singer on living with Parkinson’s, the perils of stardom, and mourning what the border has become.
It’s been ten years since Linda Ronstadt, once the most highly paid woman in rock and roll, sang her last concert. In 2013, the world found out why: Parkinson’s disease had rendered her unable to sing, ending a musical career that had left an indelible mark on the classic-rock era and earned her ten Grammy Awards. Ronstadt’s earth-shaking voice and spunky stage presence jolted her to fame in the late sixties, and her renditions of “Different Drum” (with her early group, the Stone Poneys), “You’re No Good” (from her breakthrough album, “Heart Like a Wheel”), “Blue Bayou,” and “Desperado,” helped define the California folk-rock sound. Along the way, two of her backup musicians left to form the Eagles.
But Ronstadt, now seventy-three, didn’t rest on her greatest hits, experimenting instead with a dizzying range of genres…
A new documentary, “Linda Ronstadt: The Sound of My Voice,” directed by Rob Epstein and Jeffrey Friedman and opening September 6th, looks back on Ronstadt’s adventurous career. She spoke with The New Yorker twice by phone from her home in San Francisco. Our conversations have been edited and condensed.
What is your day-to-day life like these days? “Well, I lie down a lot, because I’m disabled. I do a lot of reading, but I’m starting to have trouble with my eyes, so that’s kind of a problem. It’s called getting old…”
Who do you spend most of your time with? “My son lives here. My daughter comes over. I have really nice friends; they come over and hang out with me. It’s hard for me to get out. It’s hard for me to sit in a restaurant or sit up in a chair. It’s hard for me to stand around, so if there’s a situation where I’m liable to be caught in a doorway talking to somebody for five minutes, I tend to avoid that…”
How do you cope with the frustration of not being able to do everything you want to do? “I’ve just accepted it. There’s absolutely nothing I can do. I have a form of Parkinsonism that doesn’t respond to standard Parkinson’s meds, so there’s no treatment for what I have. It’s called P.S.P.—Progressive Supranuclear Palsy. I just have to stay home a lot. The main attraction in San Francisco is the opera and the symphony, and I make an effort and go out, but I can only do it a few times a year. It makes me sick that I’m not in my seat when Michael Tilson Thomas raises his baton, because he’s such a good conductor, and I miss hearing orchestral music. My friends come over and play music, and that’s where I like it best, anyway: in the living room.”
As you tell it, the first symptoms, you noticed before you knew you had Parkinson’s were in your singing voice. “Yeah. I’d start to do something, and it would start to take the note, and then it would stop. What you can’t do with Parkinsonism is repetitive motions, and singing is a repetitive motion…”
* * *
Thanks, Sam McClung, for this . I’m going to mention it in our PD support Group unless you are there and want to do the honors. For all of you reading this, you can get a similar version of Ronstadt’s interview from CBS Sunday Morning on YouTube. She’s straightforward with it. And thanks for the list of celebrities, Sam. It brings those people up to our level, doesn’t it?
09.02.19: Only one person caught the mistake in last week’s MM. I didn’t; neither did PJ. REMEMBER: Monday 09.01.19 is Rabbit Day! Ol’ Eagle Eye Harvey caught it. Proof that he reads to the end. Congratulations, HS. You get the next copy of Maytag Moments absolutely free! Oh, I forgot: It’s already free!
Much lightning and thunder last night. We thought there would be a deluge of rain. Our rain gage showed .1” this morning. Only enough to spot the windshields. However, one caveat: the morning was a cool 76º. It’s been a long time since it was under 80°.
0830: Joe invited us to attend Ethan’s 16th birthday party at Brother John’s Beer, Bourbon, and Barbecue. Besides getting a soft air pellet gun with about 5000 pellets (Soft air means it wouldn’t have the force of a BB), brilliant multi-colored beachwear, a razor (!), and he also got a new belt. Yep. He is one tall dude! And strong enough to carry a Sousaphone in the La Cienega High School Marching Band.
Ashley, (Jessa’s sister and trainer for open water deep-sea diving), Jessa, (Joe’s wife), Jonie,(Jessa’s mother), and Sam.
Julie and PJ have a chance to sit together. When we finished, Julie taught me how to use the cell to order the Lyft car (Similar to Uber) for our transport home. It is amazingly simple. At one of our PD meetings, we were provided with resource pages for different transportation needs in Tucson.Twenty-four resources.
09.03.19: It is a cool 78º this morning. I sat on the Brett Bench just enjoying the fresh air. My hamstring came back to me last evening with a vengeance. I could hardly walk this morning. A hot shower with the spray hitting the back left leg helped relax it. (Yes, Tresha, I started with the #4 leg stretch even before I got up.) I sat on my trusty tennis ball while on the Brett Bench.
1400: PD lecture on massage, acupuncture & Qigong. We’re going to check out Mara Concordia, Peaceful Spirit Wellness Centers.
1600: Took our virgin trip on Lyft to The Loft Theater for the preview of Ken Burns’ Documentary of Country Music History. Ate popcorn – spilled popcorn – enjoyed the forty-five-minute preview. We plan to see the full series of eight episodes on PBS.
Three local country songwriter/singers were interviewed (sorry, I didn’t hear their names) afterward, and guess what: They all agreed that you have to practice writing your ideas and songs daily. If the line comes to you at 2 o’clock in the morning, you get up and write it. They don’t worry about whether or not someone will like their song. They write the song they want. It’s theirs. Once it’s recorded and goes out to the world, then it’s yours, ours, everyone else’s. That’s a general theme of top Country songwriters. My! My! Where have I heard that before?
When they have a gathering of fellow songwriters and musicians, sometimes they start by spending 10 minutes to write new lines. Then they take out their guitars and play each other’s lines. (Shades of the six-minute writing prompts in our writing groups.) Some of the original songs were written on pieces of cardboard, the backs of envelopes, scraps of paper, and any material that would take pen or pencil markings.
All in all, the evening was successful. Our Lyft ride arrived three minutes after I requested on my cell phone and took us right to our front door. Total cost, including tip, round-trip was $20.00.
09.04.19: 0500: Still dealing with this hamstring. 0800: Appointment with Jackie Camargo, N.P. Gastroenterology on Tanque Verde and Paseo ‘Rancho Esperanza. Turns out her office didn’t mention that she would be at her alternate site on Houghton and Drexel! I wasn’t absolutely sure about the location of this building which is called the TMC Rincon Health Campus. (17 miles away!) I missed my appointment by seven minutes. She took me immediately. The desk clerk was apologetic, saying she didn’t know why the complete information was not given out over the scheduling service. I wasn’t the only person with the mixup. Another fellow came in right after me with the same problem. I spent exactly 7 minutes with Jackie. Had she been at the original Mesquite Surgery Center, after our meeting, I could have driven the extra mile to Desert sports and finished my exercises for the day with Tresha and PJ. Ah, well. They have growing pains. Another month and everything should be working fine.
1100: PJ and I had a couple of errands – one to The Gregory School – ending up at the Eclectic Café for lunch. Frequently, whatever she orders, I just say, “I’ll have the same.” In this case, it was a delicious strawberry chicken salad +2 boxes. We had enough left over to have it for dinner. Then we stopped at Sprouts and picked up some groceries. I spent a couple of hours checking through the email trying to catch up with the reading. Took a Bayer aspirin to combat the leg pain. PJ’s right arm is giving her trouble. She may have strained it exercising this morning. She wound up taking a Bayer Aspirin also. In bed by 2130.
09.05.19: 0530: No leg pain this morning. 0600: I practiced archery for 30 minutes before the sun came up. I haven’t practiced for the last three or four days because my leg was bothering me. This morning was the first time. It was good to pull the bowstring again. I can still hit the target. If the club is open today, I may go over and shoot indoors since the outdoor temperature is going to be over 100º.
1300 -1600: Didn’t go anywhere. Worked a little on my WIP, read from the pro-writer site, printed a picture of the SPRAY model for PJ’s story about Joshua Slocum, who was the first person to sail solo around the world. He was a distant cousin of hers. Virginia: You and Larry will enjoy this book.
I got caught up in a video presentation on meditation. The man is funny! He tells the secret of meditation. The lesson lasts almost two hours. I won’t give it away.
Meditation and Going Beyond Mindfulness – A Secular Perspective
Boy! Talk about Maytag wash. I am filled with a mixture of laundry today! I read a piece on Memoir Writing by Sheila Bender
SheilaBender via gmail.mcsv.net
Writing the Emotionally Important Scenes. Break time.
Now, at 0500, I have a fresh glass of ice water (with 11% humidity and 103° temperature each day, one has to start hydrating immediately.) I read the rest of your article. Then I open up my file, scroll to chapter three, read my last line: “I see you’ve entered the world of living, Professor Slaughter. Ajei’s coffee should perk you up.”Man! This came at the right time. (Sept. 1) I printed it, stapled it,and put it on my to-be-read pile on my reading table next to my chair, and forgot about it until last night (09.05.19:2100) when I saw the corner of it sticking out from under two magazines that were piled on top. PJ had already turned off her light and was in the other part of the house getting ready for bed. I ran my finger up the lighting strip. Holding the seven-page manuscript in my hand, I figured this would be a good bedtime story. I kicked off my sandals (again), eased my chair back to a 45° angle, and begin to read. I came to the familiar, all CAPS words, SHOW don’t TELL nodding in agreement. And then the list of seven elements. By Item 3, I moved my chair up to a straight sitting position, turned the page, took another sip of my ice water, and read items four, five, and six. By the time I got to Item #7(Commentary), I was ready to jump out of my chair, fire up my computer and scroll to the most recent scene in my WIP, tentatively called THE HOGAN. However, I knew that I was too tired, so I did the next best thing: I carried your article into the computer room and propped it up on top of the keyboard. I couldn’t help but see it the next morning.
I wake up my Dragon program and begin writing.
09.06.19: 0500: Up and writing. We walked 98% of Park Place Mall this morning for a change in our exercise routine. 0930: Namaste: We did our first QIGONG moves. (12 minutes) Practiced a few arrows and I spent the rest of the time on my WIP.
09/07/19: 0500: 0930: Practiced shooting. This evening we’ll ride with Julie to Ethan’s Boy Scout Dinner. Joe is this month’s chef. 1000: I added another 1270 words to my WIP. As soon as PJ (she’s sleeping at the moment) edits this, I’ll send it off, (on the 8th).
Julie takes the place of Lyft and transports us to the Boy Scout dinner in Corona de Tucson.
Chef Joseph has volunteered to be in charge of this month’s Boy Scout dinner. In the red behind him is wife, Jessa who “voluntold” him to volunteer for this job.
The Menu: Bratwurst with red chilies, onions, and corn on the cob and round slices of spicey butter (of Joe’s own recipe) for the corn that was absolutely delicious. He had a $200 budget. He did it for $198. He was so successful that Jessica told the troop that he would be happy to volunteer to chef the next two months! They do this the first Saturday of each month. I’ll remember to take a picture of the crowd next time.
Julie and Jessa. Note Jessa’s Arizona shirt. Arizona blew out N.A.U. 65 to 41.
Coming in the next mailing:
The voyage of THE SPRAY.