(Like so many pieces of laundry, morning thoughts at.)
October 21-28, 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
IBS: Irritable Bowel Syndrome (often associated with PD)
LVST: Lee Silverman Voice Technique) has been an effective way to treat the symptoms of impaired voice and swallowing (a PD problem for some) …
MJFF: Michael J. Fox Foundation
NAMASTE: The Spirit within me honors the Spirit within you.
PD: Parkinson’s Disease
PDSG: Parkinson’s Support Group(s)
PMD: PARKINSON & Movement Disorder Alliance
PSP: Progressive Supranuclear Palsy.
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 (Awakening) 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!)
10.21.19: The morning is actually cold enough that I wore a long sleeve shirt!
WE GET LETTERS: THIS from Sam McClung:
I Just received your latest MM. I just finished my latest journal entry. This is an excerpt.
From Sam The Younger:
About ten days ago, I attended an all-day conference about PD for people with the disease, adult children of people with PD, and caregivers of PD patients. I was apprehensive about attending since there were so many unknowns for me, and it can be overwhelming for me to meet certain challenges. Melissa was out-of-town that day, so I was on my own, which adds a whole host of possible things that can go wrong. I have a good enough imagination that I could fill a novel with the list of fears and trepidations that swirled in my head on the days leading up to the conference.
Even though I arrived early at the conference location, which was at a hotel here in Tucson, all the handicapped parking spaces (of which there were very few) were taken, as were all of the parking spaces close to the lobby entrance. So I had to park in the big lot on the side of the building and make my way through the maze of cars. A sign in the lobby directed me to the ballroom on the other side of the courtyard pool. Once there, I was faced with a line of people checking in. During the check-in process, I was handed my name tag, and the folder of conference papers. Then into the ballroom packed with tables, chairs, vendors, and people. A couple of people I knew called out my name, and I happily found sanctuary at the table with them.
All of this, I describe is standard conference stuff that in my professional life as a teacher, coach, and administrator had done dozens of times. So what’s the big deal?
With PD, every patient is on a unique journey since symptoms and degrees of symptoms vary and cause no two patients to be alike. My own journey is headlined by my bad balance, contributing to potential falls. What I described above are challenges to my balance: weaving through a parking lot, walking a long distance, standing in line, lots of people all moving in different directions, and a large room packed with tables and chairs. In addition, I now use a cane, so handing me papers to carry was not ideal since balance challenged people should keep one hand free. By the time I arrived at my sanctuary table among friends, I was certain I had made a big mistake attending, and that at least one of my imagined bad things was going to happen.
Before the program started, while at my table, I had a chance to catch my breath and relax. I remembered that my life has always included challenges that I have faced and to the best of my abilities, have persevered. This was just another situation that required my focus and my best try.
As I look around the room, for the most part, I can’t tell the PD patients from the non-PD. Why? Because most people with PD have only tremors, and those can be treated with medication, so very few people with PD have any visible symptoms for the first five to ten years. Sure, there were attendees at the conference using walkers and wheelchairs or walking with the stooped posture. However, a majority of the PD patients were outwardly symptomless. Hence, my lack of balance manifesting itself so quickly with me is why my MD neurologist believes I also have PSP or Progressive Supranuclear Palsy.
Fast forward to the hind site. I did not fall. The speakers were interesting. It was a good but tiring day.
What does a conference on PD include as speakers?
The opening presentation was by a woman whose professional life as an international financial troubleshooting consultant was interrupted in 2010 when her husband was diagnosed with PD and dementia. She reflected on her new life as a caregiver and having to learn new perspectives of compassion.
Next on the agenda was a lawyer giving a quick how-to about wills, medical power of attorney, financial power of attorney, and estate planning. Next up, a speech therapist, because PD affects most patients ability to talk and swallow.
The final speaker I heard was a nutritionist, whose perspective was PD patients: the loss of their sense of taste and smell; their need for increased fiber and liquid intake; and their need for quality versus empty calories,
How could this conference be a little bit different than others? At this conference were volunteers that would assist people in getting to the restroom, getting coffee or water, or doing what I asked: be my escort in the crowded room to help mitigate the chance for a fall.
Knowing that I was going to get tired, I left mid-afternoon, not staying for the final speaker, the happy hour, dinner, and the after dinner band. I had only expected to make it half the day, so I made it longer than I anticipated. PD patients often tire easily. One person I talked to there had rented a room to rest during the day as needed. As I was leaving, I noticed two people stretched out on couches outside the presentation room. It was a rewarding day, both in learning and personal accomplishment.
Thanks, Sam, (The Younger). I’m sorry I missed the conference. As an ex-Language Arts teacher, I give your report an A+. I suggest you tape it to your refrigerator door.
From Carolyn Otto:
You two are pretty amazing. I’m back from a trip to Albuquerque. Two other friends and I drove to see the Balloon Festival. It was amazing. I also spent time with my brother. He is fighting cancer, and it is not good.
Continue enjoying each day.
Thanks for the good wishes, Carolyn. Swombo and I have flown in balloons. We have not been to the Albuquerque Festival, though. Phyllis and I send you our heartfelt blessings and prayers for your brother.
1730: The chicken is thawed. I’m going to cook dinner.
10.22.19: 0530: Ready for Quail Run Writer’s Group today. Five of us meet at Flo’s in Rita Ranch. Ought to be fun.
QUAIL OCTOBER 22:
Instead of a 6-minute writing, we opened with Bev’s verbal story about learning more about her car. (She’s owned it for two years, now?) Things from Jumper cables to how to Pop the Hood. (We think this would make a good title.) She’s 500 miles from home when she learns this lesson. On we moved to hawks feeding on doves – a pleasant pastime with Nature from one’s own backyard. (Pass a napkin, please.)
PJ: Happy Surprise Birthdays for PJs knee – then 9 years later –another birthday for her shoulder (complete with Happy Birthday ribbons pinned to her sleeve.
Pauletta: A STIMULATING CONVERSATION between two 4 & 5 year-olds.
See you later, Aligator.
Bev: Her short story THE VICTORIAN HOUSE for Halloween. Haunted. Scary!
FLO: THE OCEAN ABOVE US Clouds and poems with questions and a
watercolor. Here are three excerpts:
A Cloud is Born
The sky was tinged in gold by the newly risen sun.
Otherwise unmarred it stretched,
vast and empty from mountain top to valley’s end.
I marveled at the canopy so pure, but as I gazed
a wisp appeared, floating on the sea of blue ……
And another titled:
Should I Build an Ark?
Oh, that couldn’t happen the Scientist claims
As he peers at the clouds, all grey, and fat …
Yeah, and once upon a time, I think,
Scientists said the earth was flat.
And still another:
Eternal Conflict: H2OSUN
I have imagined, on occasion, that
clouds are a great white-sailed armada,
cruising the ocean above, gathering forces…
Sam: Gave five (before and after) examples of writing for a Deep POV using paragraphs from his current WIP. He quoted Stephen King, who said, “The Road to Hell is paved with adverbs.”
The high point of the morning for Phyllis was when Bev gave her a Reiki treatment for her shoulder. She was pain-free for the rest of the day. She did not take a pain pill before going to bed.
1530: Struggling with passwords and Dragon. Think I’ll rest for a while. 2100: After watching THE VOICE – to bed.
10.23.19: 0545: Still no Dragon. We were running late this morning. Phyllis only had a food bar. She felt pretty good from Bev’s Reiki treatment yesterday, but to be on the “safe” side, she decided to take one non-aspirin, anti-pain (Tramadol) pill. She knew it could cause dizziness. “We will have breakfast after exercise.”
0755: Ten minutes into the routine, she fainted. Fortunately, Tresha knew what to do and ordered EMT. She had PJ sitting in a chair. She was incoherent for 30 seconds. Tresha’s worry was that she had a stroke. 0820: EMT arrived, and she got to ride to St. Joseph’s Hospital with the siren blaring (and five hot) EMT guys. (Yes. She was awake enough to know that the EMT guys were hot!) She was transferred to the Emergency area. When I found her, she was already hooked to the machines. BP was 139/61. That’s a bit high for her.
0930: She is in the hospital bed waiting for all the tests. While she was still in Emergency, I remember her telling me to call her bridge group to tell them she would be about thirty-minutes late! Ha! She and I had our schedules memorized, and our brains just weren’t ready to “cancel and re-boot” a new program of IN-activity. When I finally realized that everything needed to be changed, I called her group and canceled for her.
1015: tests came back “normal” 1100: I drove her home where she had hot oatmeal and plenty of water.
1130: She is sleeping. She is to have no Tramadol until she sees her PC. (Earliest appointment is 1000, Oct. 31.) Rest and water, and rest is the Order Of the Day. She slept for five hours. 1700:I fixed dinner. We watched portions of CBS Sunday morning, one episode of Doc Martin, and were in bed by 2100. We missed the annual TCF in-Church candle lighting. Sorry about that. There is an outdoor one coming up in December. (Noted at the end of this Maytag Moments.)
10.24.19: 0700: I am up and letting PJ sleep. 0900: PJ has hot oatmeal with me. She elects to not walk this morning. We spend the rest of the morning reading. 1015:PJ is sleeping again. I slept for about an hour. When she awakens, I’m going to take her out to lunch. (If I don’t journal this, we won’t remember what happened from one hour or day to the next.) Turns out, she didn’t feel up to going anywhere, but would I bring her Take-Out from Jerry Bob’s? Of course. She had roast chicken salad, and I had chicken quesadilla. We spent the rest of the evening watching news and three past episodes of Doc Martin! That’s the first time we have binge-watched a continuous program in years! We were in bed by 2130.
10.25.19: 0700: Is this what happens after two days of stress? I overslept for two hours. 0930: PJ is up.
1000:I fixed her an omelet. She cooked the bacon and toast (from the yummy Barrio Bakery). We spent a quiet morning inside. The wind gusts were so loud we could hear it whistling outside the windows. We decided to not walk. 1130: We slept again for two hours. 1400: We are up again. PJ is in her office, catching up on correspondence missed from the past two days. I have over twenty emails to answer. Our schedule is moving toward normal, again, I hope.
1500: Still windy. I think we’ll (ahem!) watch another episode of Doc Martin.
WE GET LETTERS:
Sam, thanks for sharing these with me. I really enjoy being an onlooker in your daily happenings.
God bless you and keep you always,
Charlotte (Grandma Poe)
Thank you, Charlotte, for the encouraging response.
10.26.19: 0600: Feeling a little better this morning. 0900: PJ is up, and we are fixing our usual breakfast: hot oatmeal for her and “dry” cereal for me. 1030: We drove to Costco for monthly supplies. Came home with a roast chicken for our lunch.
1230: We took another nap. 1500: I’m up and preparing for a ride with Joe to the U. of A. to watch Ethan playing his sousaphone and marching in the Cienega HS Band Day competition: Here are 34 seconds of a 15-minute production. https://photos.app.goo.gl/sZyLjod1DaSHAB2o9
I had to struggle with this camera (and the photographer) malfunction. Cienega High took 5th place out of 20 in their class. Catalina Foothills took first. I have part of their performance below.
10.27.19: Working on last night’s pictures. Here are a few more with the final shot being the eight minutes of the U.ofA. Pride of Arizona Band. They raised the bar for the high school students.
My apologies for the poor photography, but maybe you will get the spirit of the evening, which is why I included these clips. Forty years ago, we watched Ethan’s father march for Sahuaro High School on another Band Day so long ago. And in 1953, I proudly marched in the Wasatch Academy thirty-six piece marching band playing my tenor sax. We were trained by a retired Marine Drill Seargent. No fancy stuff. Just straight military formations. We took many awards. I didn’t recognize any “marching” music last night. “Things change, Sam. Deal with it.” Yeah, I know. Change happens.
Joe drove us home. We were in bed by 2345. Phyllis slept until 1100 this morning.
I appreciate your responses. This has been an unusual (if not stressful) week. More stress than usual. Here’s hoping your coming week will be easy going. Blessings to all of you.
Sam and Phyllis
PS: Plan Ahead:
The Compassionate Friends announce WORLDWIDE CANDLE LIGHTING. Join us on December 8, 2019, at 7:00 PM, at the Children’s Memorial Park off Oracle Rd.
Now believed to be the most massive candle lighting on the globe, the 23rd annual worldwide is a gift to the community from The Compassionate Friends. It creates a virtual 24-hour wave of light as it moves from time zone to time zone around the earth. There will be more information in the next Maytag Moments.