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(Like so many pieces of laundry, morning thoughts aren’t usually organized.)

August 11-18,  2019

Living with Parkinson’s

Phyllis & Sam Turner ©2019

about.me/tobecontinuedbysam

Codes:
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
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)  Writing is my vacation!
YISKA: Navajo for Darkness has passed.  (Also the name of a Navajo Sheepdog who barks in Navajo!)

08.11.19:

Our son and 4/5 of his family: Joe, Jessa, Ethan, Rachael Turner gave up their water wings for scuba gear.

 

Might as well start this day off with a BANG!

WE GET LETTERS:

From MaryEllen, who, after 30 years, is out of her closet:

Thanks so much for your writing, Sam.  

…and your photos…I especially like the blue crayon wrapper on your forehead.  It really distinguishes you.

…finally took the carpet, and carpet pad, and tacking strips, and staples out of the floor of my middle bedroom closet (where I sleep as it’s my sanctuary). Oh, darn, that sounds like I sleep in the closet…no…I sleep in a real bed…outside of the closet.

It has taken me only 30 years to finish taking up all the carpet…that’s OK…I prefer to work at my own comfortable pace.  

Best to you and PJ,

ME

08.12.19: 0500: Hmm. Only 30 years! I’ve cleaned my office at least twice in the last 30 years. For some reason, the overall picture (I will not entertain you with a shot of it this morning.) has not changed. SET

This, from HS

Another good MM, Sam. I’m convinced anything important about age is more a matter of attitude than chronology. Met an 88-year-old man in Alamogordo (NM) yesterday. We were talking about his truck, which was beat up and well used (and very well-kept beneath the rough veneer). He grinned and said he camps a lot. Then he said, “When people ask why I camp at my age, I tell them I prefer camping to hospice.”Then he laughed out loud. Very wise man.

* * *

I only write when I’m inspired, so I see to it that I’m inspired every morning at 3 a.m.

http://harveystanbrough.com — my author website

http://hestanbrough.com — my instructive Daily Journal

* * *

From SET: That puts me in mind of the article I read in Arizona Highways a few years ago about two guys in a beat-up yellow and orange 1970 Chevy Blazer. Can’t find that issue. I think the title is: TWO Guys IN A TRUCK. The outside mirrors were broken off; they’d replaced the engine two or three times. They were visiting Monument Valley and parked at a viewpoint. They got out and set up their tripod for a picture of the valley. Another visitor came up to the driver and asked if the people in his party could take a picture of the Blazer!

From: MMT:PARKINSON’S

Hi Sam,
Thought I would check-in and see how your dr appt went. {It went smoothly. I’m progressing slowly with balance problems and sporadic tremors. No meds, yet.}

I went to my new  MOVEMENT  Disorder Specialist a couple of days ago. I liked the doc; she spent 1 1/2 hours with me. I see why she is one of the best in Tucson and well worth the 6 month wait.  It looks like I have an atypical form of Parkinism called  Multiple System Atrophy (MSA). Like Parkinson’s, there is no cure and is harder to treat. It has symptoms that PD doesn’t have. (I had wondered why I could not find them in the literature.)

The doctor recommended I get a speech therapist so I can start exercising the throat muscles, which will help prevent choking, aspiration, and help with my speech. Until recently, I thought Parkinson’s was only tremors; The doc also recommended getting a physical therapist and a GI Doc. I am looking for a neuro-ophthalmologist because my brain keeps changing my eyesight and I can barely see. This is a very complex and labor-intensive disease. But I am religiously doing my exercises and my balance, gait; gestation has improved. The water exercises are working too. It is the rest of the symptoms that are giving me problems.

The new diagnosis threw me, but I am doing my research and will do the best I can. I have attached a MSA Brochure, which includes a nice overview.

Have you started the carbidopa-levodopa yet? I start tomorrow I found an excellent write up that gives excellent directions for levodopa newbies. The guy who wrote it is one of the top Parkinson’s  experts in the US. He has also written a great book that I bought and recommend “The New Parkinson’s Disease Treatment Book.” The book also includes everything else that has to do with Parkinson’s. I have a separate sheet on dos and don’t when starting the meds which are great and I will be glad to send it to you if you are at that point.

From SET:

Thanks, MiMi, I know some of our readers will want to contact you for more information. You are farther along than I. Once you have a website, (maybe you already do?) I’ll include it in Maytag Moments for their benefit.  Your concern about information dissemination for people in the Tucson area is worth pursuing. We’ll talk to Cynthia on the next support group meeting on 20 August.

 *   *   *

1400: To Costco for my left hearing aid back from the shop. Also picked up some pop-corn and food bars.

1800: Archery: 156/300.  I didn’t practice much last week.  It shows. I have my 1200-word story ready for Quail Run Writers tomorrow.

08.13.19: Took the Matrix in for alternator service. PJ followed in case…

0845: To Quail. Fun again:

SHARON: stiffness versus syphilis – The results in a hearing aid mix-up. Plus a play written for first-graders called Goldilocks.

FLO: a series of interviews with George Washington; Zorro; the Lone Ranger; and Batman.

BEV: Continuing with Maggy and Marissa and reference to That Woman. They had dinner.

PHYLLIS: referring once again to her mother homesteading in New Mexico.

SAM: The HOGAN short story grows longer with a first chapter called HIKER MAN.

1600: Time to practice shooting those arrows.

08.14.19:0500: Up and checking the clouds.  Supposed to be 107º today. 0730:To Tresha for stretching exercises with plenty to do until we meet again next week. She’s an excellent teacher and a friend of ours. We are fortunate to have her.

0830: Leaving Deserts Sports and Fitness for Dr. Brooks. It’ll take us 30 minutes if the traffic is good just to get to his office. This will be our first time to his new office: (Alvernon and Ft. Lowell area). We turned too soon and promptly got lost looking for his office. We made it there with one minute to spare. It took us almost an hour to register, filling out all the sheets which he should have because we were going to him regularly for several years. He’s moved his office twice since we last saw him. When he came into the examining room, I said, “You can run, but you can’t hide.” So far, all is well with Phyllis.

Can’t resist sending these pictures of our bush morning glory.

It adds such soft pink colors to the northeast part of our backyard. And of course, there’s the 20-yard target on the west side. It looks smaller than usual, but it’s not trick photography. I don’t shoot facing West as much as I do facing east. It all depends on the sun. Phyllis is resting while we’re waiting for Betsy who’s going to meet us here before we go to the Eclectic Café for lunch.

After lunch, @100º I only practiced for 15 minutes outdoors shooting 24 arrows. I decided the thermometer was not lying. It was too hot, and I quit.(Probably the smartest thing I did today.)  Instead of going to the club and shooting in air-conditioning, I stayed home and took a nap. (The second smartest thing I did today.) We had an early dinner of leftovers while we watched the news. The rest of the evening was spent reading.

I’m reading THE ART OF DYING WELL – a practical guide to a good end of life by Katie Butler. On Margaret Ann’s recommendation, I ordered it from the library, realizing that if she suggested I get the book, I would probably want to buy it. By Chapter 2, I went to Alibris (my go-to site for discount books) and ordered the book. By Chapter 3, I was reading parts out loud to Phyllis.  The first chapter is called Resilience. Here’s the introduction: You may find this chapter useful if you recognize yourself in some of the following statements:

  • You easily blew out all the candles on your 50th or 60th birthday cake.
  • Aches, pains, and health problems are annoying but not limiting. You pay your own bills, make your own medical decisions, and generally enjoy life.
  • You wonder why they make the numbers on credit cards so small and fuzzy.
  • Your hair is thinning in familiar places and sprouting in strange ones.
  • You misplace keys– and names. You’re not crazy about technology updates.
  • A late-night blows a hole in the next day. Sometimes you’re in bed by nine, and you’ve discovered naps.
  • Getting in shape takes longer, and the results are less impressive. You injure more easily and recover more slowly.
  • Some friends have died. You find obituaries interesting. {No, I don’t}
  • You sometimes sense that your time on earth is limited and precious.

 

The next two chapters wiped the smile off my face. You don’t have to have Parkinson’s to read this book; you just need to be alive.  Has anyone read it?

0730: Breakfast. 0930: Tai Chi This is our final lesson as our instructor, David Burns, is moving out of town. 1400 to 1500: shot 30 arrows practicing for tomorrow’s league. I’ve got to slow down with my release from my anchor point. I shot at the club this afternoon as the temperature is running around 110º. (better inside with A/C)  I need to take my time on the release.

I came home and read chapter 3 of THE ART OF DYING WELL. I think I’ll work on my short story for a while now. Maybe not: Joe and Rachael stopped by for ten minutes. She leaves for Flagstaff tomorrow.  Julie is due over to help load a couple more “Diana Gabaldon” books on PJ’s tablet. PJ and I were going to remind ourselves to take pictures of all of us.  We became immersed in low tech stuff, getting help with our cell phones. We forgot to take pictures. Darn! 1900: Drove to Walgreen’s for two prescriptions for PJ.

08.16.19: Up by 0515: Started the laundry – emptied trash in the alley bucket – emptied recycling in our blue bucket – took my meds + vitamins.  We have a “free” day today. Had a PJ Special lunch with asparagus, carrots, red beans, and broccoli. I would say that it was a vegetarian dish, yes?

1400: I shot 30 practice arrows outdoors. The sun was at the right angle so I could stand in the shade and shoot to the light. I managed to hit the gum wrapper a couple of times. Now if you can do that this evening in the league I might have a reasonably good score. I can’t paste a gum wrapper on the target, but the yellow circle will do.

1800:League shoot. 156/300. “Failing to success,” as Harvey would say. Ah, well. I can practice again, and we’ll see what Monday’s League will bring.

2000:Finished Chapter 4 in TAODW. This chapter alone is worth the book. The Chapter intro has seven “if you recognize yourself”- I’ll mention three of them:

  • You are in the early stages of an incurable disease that worsens over time, such as amyotrophic lateral sclerosis (Lou Gehrig’s disease, or ALS)

{Note: The author never mentions Parkinson’s Disease.  At least, I haven’t found any reference to PD so far.}

  • Your doctors use terms like chronic, progressive, serious, advanced, late-stage, or end-stage.(They mean incurable, worsening, worse yet, and approaching the end of life.)
  • You have a gut sense that following this medical appointment, your life will be forever divided into before and after.2100:Reading Chapter 4, which addresses both the patient and the caregivers. Ten “recognitions” are listed. Here are a few of them:
  • It takes you more than 20 seconds to rise from a chair, walk 10 feet at a normal pace, turn around, walk back, and sit down.(This alone is a classic indicator of frailty: try it with the timer.)
  • You lost 10 pounds, or 10% of body weight, within the past year.
  • You’ve gone to the emergency room at least once in the past year and come back worse, not better.
  • You have progressed from forgetting names to forgetting the way home.

This is serious stuff, isn’t it?

2130: We went to bed where PJ read true or false medical statements out of Reader’s Digest to me.

08.17.2019: 0515: YISKA! Spots on the car windshield this morning tell me that it spattered rain last night. We thought we heard it on our skylight. The evening had low clouds. It’s crystal clear this morning with blue skies. The temperature will be around 100°. We have appointments starting at 0900 through 1400, today. I fixed stir-fry for lunch (and dinner). 1415-1515: Shot 30 practice arrows at the club. Kent (Archer partner who consistently shoots 295+/300+) gave me some advice. Work on my anchor point and slowing down on the release trigger.  Draw with your shoulder; not just your arm.

1800: Just in time for sunset, we drove to Culver’s for umm … dessert,  and picked up a couple of pints of custard on sale. We spent the rest of the evening reading.

08.18.19: Yiska! Hazy sky today means it will be hot, again. 107º again.

About a year or so ago, we posted this sign in our front yard. (Several neighbors have them, also.)  Our pink flamingo is missing. (PJ is fixing a new outfit for it.)

Megan O’Leary lives across the street. She inherited their flamingo from the previous resident. I had the pleasure of presenting it to Megan yesterday.  She was most appreciative. The white car is her mother’s. Her mother is an In-home nurse who lives a  few miles east of here.

 

Next time I’ll use video: Two shots of Jim Wiltbank dancing with one of our younger members before Service.
https://photos.app.goo.gl/iPwHaFz8fn7tTJX19

Note to all you sign language people: check out this site and laugh:

Jeanne Robertson | Don’t Snap an Elephant to a Tree – YouTube

https://www.youtube.com/watch?v=92lofCtx52k  HAVE A GOOD WEEK.

Sam and Phyllis

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