mothers day 2021

some names and locations are reserved from comment to allow for some guessing to occur.

We met long ago at a church event.

Mothers Day 2021

Son number one sent a card.  Son number two Facebook messaged me.  Husband number one and only had a nice card and a plan to drive me wherever I wanted to go. 

I wanted to see my friend Tricia.  Tricia recently lost her husband and to add to the grief her son Joe was under the weather.  Joe is about 6 months older than our oldest son Loren.   A two hour drive is  nothing when you want to spend some time with a friend. 

We met her downtown and walked until we found a restaurant that didn’t have over an hour wait. Great food, coffee that grew on me and something I haven’t had in a long time: wheat toast with jam from those little packets. Nummy.

After visiting another hour at her house, we almost fell asleep. We have pictures of our two families, adults all snoring on the couch while our little babies laid on the floor playing with their toes. Its a comfortable place.

We had to move on from Tricia’s.  Next stop was to see my horses.  When we arrived, Charlie called out to them and both perked up their ears in the direction of the sound.  Genie made little  nickering sounds with her lips when I came up to her.  Cj let me play with her bottom lip which hangs down when she is relaxed.  And the little white spot on her nose just above her lip is about the softest thing on this earth and I just had put my nose to her nose to feel it.  .

this is a BIG picture

Laz was sitting out front of the barn and  we chatted for awhile about life.  Then he told us about the incident with CJ over the winter. The neighbor called and told him that one of the horses was down on the hillside and that Laz’s gelding was kicking at her.   Laz rushed over, got his horse out of there and called the vet.  CJ finally got up and they got her in the barn.  They did their best to boost her, but she was dehydrated and very thin.  Laz didn’t know what condition CJ would be in the morning.  But when he walked into the barn whistling, she had her head out of the stall and ears perked .

We stayed there for over an hour hearing stories about my “girls” and the various rides they had been on.  I know it was the right thing to re-home them.  CJ and Genie are getting the kind of attention they deserve.

For what we lose we also gain.  Kids grow up and move away.  We as empty nesters are thrilled with even the simplest of cards or social media comments. Losing a spouse, oh how sad.  We could see how much he was admired, and she loved by people of the community.  She may not have known it before, but she does now. 

Finding for the silver lining in the  dark clouds makes life much more enjoyable, don’t you think?

Genie nickering under her breath, not wanting me to know she really misses me.

Good Friends Good Service May 7, 2021

Sometimes circumstances arise that allow other  people to show their true colors, and I mean in a positive way.   The first group in mind are in the good friends category. 

Charlie  had to go out of town for a few days. He knew he was leaving me at a time I was not doing well with my symptoms of Parkinson’s.  So he arranged for a bit of supervision for his wife.  The people he asked  were delightful ladies about my own age, retired and probably a little bit bored.   Those he chose were friends I had not seen in quite a while. 

Not really thinking about having company, I had stacked up projects on the dining room table.  My doctor had changed my prescriptions, so I had my cookie tray sorting sheet, a half a dozen pill bottles and the new 5 times a day pill sorter.  Then there was  big box of art supplies.  I have now collected numerous paints and drawing pens, three sketchbooks, a package of cards and envelopes and book marks.  As soon as I get everything put in the box, I start digging through it for what I need for the next drawing.  I have pens all over the house, the majority have lost their lids and dried out.

Then there  are the clothes.  I dislike doing the laundry more than anything.  We quit folding underwear and socks years ago and now hang our  t shirts.  What do we do with the pants and shorts?  Mine get folded neatly (not by me)

 Then of course the shorts I want are  on the very bottom of the stack . I try  to pull them out the whole stacks falls to the floor.

I felt no guilt for only completing 1 of the 4 projects.  I had guests to entertain (even though they were supposed to be entertaining me)

I had to schedule the visits as they all called within a few minutes of each other. That was fine and all were on the best visiting behavior. One brought asparagus, another took me to dinner and yet another brought knitting and we sat  in the rocking chairs knitting  and sketching.  They all brought a spirit of  helping.

Today I had my first massage in at least 18 months.  What a good massage therapist can do for you when your body is a mess!

Charlie dropped me of picked me  up in our new to us 2017 Ford F-150.  With his foot on the pedal and his thumb  on the starter button, he expected the roar of the engine coming back to life  Nothing.  Nada.  Nope.  The FOB battery died. First Charlie called friend Dave to see if he could come fetch me and the $200 of groceries he had purchased while I was  getting the massage.   Charlie called the Ford garage.  It was after 6 pm, hopeless time to get into the garage.   A salesman happened to answer.  He gave instructions to pull the cup holder out of console of the pickup and we would see a little slot to put the fob in.  The truck would start. This sounded a bit far fetched.

I pull out the manual from the glove box while Charlie listened to the salesman instructions. When neither of the us could come up with the answer  the salesman said “I’ll be right there:”  He must have lead-footed it from the dealership because he truly was right there  Dave showed up, and loaded me and the groceries in the car, took me home, unloaded the groceries into our house and was gone.

The salesperson showed us the little slot in front of the cupholders that the key fob is dropped into.  Charlie followed his instructions, and he heard the  roar of the engine. He stopped at the hardware store on the way home and replaced the batteries in the fob.

The ladies could have all had things to do on a beautiful weekend.  They gave that up to visit and call me.  Good Friends.

I am pretty sure the young salesman from the FORD garage  doesn’t regularly go on service calls to help customers. He is the champion of the story by far. Good service.

And Dave can be my chaueffer any time.

A Challenge Just When I Needed One

A Challenge Just When I Needed One

April 20, 2021

I have not been having a good time lately.  You read my last post, didn’t you?  My mind seems to be thinking clearly but the words are getting mixed  up.  I cannot walk any distance at all without support.  Up and out of the chair is an impossible task. The list goes on

I just wrote my Dr a long letter.  She’s the one to hear all my complaints, not readers of my blog.  You can just know that I have been struggling more than usual.  I know you will understand in the way all people with Parkinson’s understand.

 So, I stay true to my form.  What form?  The form of me that says no matter of bad I have been feeling, no matter how hard things are for me to do, if I have a chance to  go try something new I will do it…except for hang gliding, bungee jumping  off of bridges, or cliff diving.  These things I have no  need for. But there are other challenging things I might try…yes,  there are.

A camping trip with long time friends was an immediate spirit booster.  I reserved two spots across from each other at the Deschutes River recreation area.  What fun we had telling stories on each other,  watching the baby owls preparing to leave their nest, sharing meals.  We also played hours and hours of cutthroat Kings in the Corner.  When they had to go back to work,  we got to stay another day at the park. (can you spell r-e-t-i-r-e-d?  Another night of watching the baby owls lead to me telling my Parkinson story in detail to other campers parked nearby.

Time for the bike ride. Charlie borrowed a mountain bike.  My tires are larger and heavier than a road bike so I thought it was good.  The old railroad bed had a slight grade of 3% at the most.  The challenge here was to stay in the smooth part of the track because there were patches of solid rock, loose rock, deep gravel, pea gravel some sagebrush,  limbs downed. 

In town I may ride at 12-15 miles per hour.  I thought we would easily pedal along at this speed on this gravel dirt road, taking an hour to ride to the end of the trail and return the same route  I actually hit the top speed of 6 mph at that rate we certainly would not get back to camp before dark. 

My DBS stimulator was bouncing in  my chest  and on the worst bumps I had to place my hand there to keep it from bouncing around.   That gave me less control than if I had both hands on the wheel.

Charlie thought something was wrong and came up beside me.

“Are you ready to turn around”. 

“No way” was my response.

I didn’t come here for some half done rodeo BBQ.  I wanted adventure and I was going to get adventure. 

Adventure it was. Bumpy road.  Avoiding rocks.  Making room on the narrow road for forestry trucks to go by.  Turkey vultures swooping for the critters we scared up.

 Charlie wanted some pictures with the river  canyon in the background. This could only be completed by my maneuvering the trike within 2 inches of the drop off.  I felt like my trike was going to take the leap with me on it.  We didn’t take that picture, but did find photogenic flowers in bloom.

Sometimes you just have to look at some new scenery.  Do something that’s a little challenging.  Get your mind off your woes while you wait for the doctors response.  Fresh air, campfire smoke, telling stories, star filled skies.  Lazy mornings. 

It’s a familiar scenario.  A rough path, a little push through the deep gravel  and I am back pedaling fast on smooth pavement.

I turned off my DBS today

Why did I do that?

Feeling crummy today. My ankles and feet are so swollen I cannot get my shoes on. I fell hard yesterday, on my back. I don’t usually fall on  my back. My trekking pole was not tightened and when I put it down and put my weight on it it slid out from under me. I was sore, but not hurt.

I gained some introspection. I have been with this disease, diagnosed that is, 13 years. I wonder if I am starting to go downhill. I know I am not getting enough exercise. How does one get enough exercise when they can hardly move!

So why did I turn off the DBS. I was doubting myself. I doubted if the DBS really gave me that much benefit. I am still taking lots of PD meds and it makes me wonder when the bad side affects will start kicking in.

What happened when I turned it off? Immediately after I turned it off my right hand tremored really hard. The left joined in. But then they both stopped tremoring and I was having some trouble swallowing my saliva. That was strange. And my body was very stiff. I had a really hard time getting off my bed and walking into the kitchen was like walking in knee deep cement. I stayed with these feelings for 15 minutes. Then I turned it back on.

I want to cry. But that would show I am weak. Or would it? Maybe my courage would actually shine through.

I must believe. I must believe in myself, in what I know will help me.

Today, it just wasn’t in me…the belief that is.

Tomorrow is another day.

Thank God.

Facebook Memory

Mt Rainier June 19, 2000

This was actually 21 years ago on our Anniversary. There must be a reason why it showed up in my memories today.

This climb occurred 6 months after I had a total hysterectomy. Charlie and I spent a day on the lower slopes where he taught me about harness and ropes, glissading, self arrest, crampons..all the things I needed to know to get to the summit.

We made it to Camp Muir which is a climbers bivouac area at 10,000 feet. That meant we had come up 5,000 feet in elevation from the Paradise Lodge Parking lot. After visiting the compost toilet and waiting for Charlie taking his turn, a male climber started hitting on me! (that is one of the funny memories of this event).

Climbing down a little to get away from the crowd of climbers at Camp Muir, we found a spot to camp and at Moon Rocks. I fell asleep in the sun while Charlie put up our tent. He made some soup, and I moved into the tent and my very warm sleeping bag. Exhaustion kept me asleep until the next morning.

This summit was out of my reach, physically at that time. But the true summit is in my mind and in my spirit. Memories take me back. The exhaustion and pain I felt are replaced by the beauty I witnessed and the sense of accomplishment. Some days I feel like I am climbing a mountain, its so challenging just to put one foot in front of the other. Its like climbing stairs on a steep snowfield. On those days I take smaller bites of adventure. Cutting myself some slack I feel good about what I do accomplish. There is always tomorrow.

ADOPTION

I am very humbled.  Life is good for me.  Not only my life as a woman in my early sixties.  My life as a person with Parkinson’s disease is good, and at times even rewarding.

In January of each year our church puts up crosses in the outdoor play area to remind people of the children whose lives were taken through abortion since Roe vs Wade.

The first two paragraphs may have you wondering what this is all about.

Two boys came to make our family whole.  They grew inside the womb of two selfless women, who gave birth to them only then to relinquish them to us. Loren came to us when he was three days old.  Luke joined our family when he was less than 24 hours old.   

Now do you see why I feel so humbled.  Now do you see why I mention Roe vs Wade?

Neither of these women were Catholic.  Charlie and I practice this faith. And yet they chose us. We may never know why.  One birth mom had a lot of support, the other kept her pregnancy a secret.  These boys came to us almost 8 years apart.  They each presented us with much joy, and many challenges and heartbreaks over the years.  We held them close always, if not is our arms we held them in our prayers. They are both adults now, completely out on their own. We miss them.

We did what their birth moms asked, to raise them to adult hood. We did our job.

I do admire these women for the bravery they demonstrated throughout their pregnancies.  And after carrying them under their heart for 9+ months and delivering them, I can’t imagine what it felt like place them in our family.  I think it was as painful as the delivery.

Two handsome, intelligent, and wonderful men are out in the world doing their thing.  And when they are home, they intuitively know what I need help with, and they are at my side.

I am not making a moral or political statement here.  So please don’t respond in that way.

I just wanted you to know, about our boys, that is.

God has given me a very good life.   Parkinsons disease or not.  Life is good to me.

The Best Day Ever

In January of 2020, I was preparing for a great road trip. Charlie had our Coachman Crossfit camper van, Dooley, mechanically ready for our journey. I had arranged for 12 speaking engagements along the way and figured out how to get to each location and where we would stay at night. We packed healthy food and a couple bottles of red wine. Two sets of dress up clothes were hung up in the closet, and my baseball caps, Wranglers and sweatshirts in the cupboards. And the gas tank was filled, not with regular, but with super premium.

Ready to go, we waved goodbye to house and dog and said a prayer of protection for our travels. Charlie drove the van out onto the paved lane that goes by our house and shut the gate behind us. Ready? Really? Physically maybe. I was unsure about the speaking part. I prepared a bunch of slides to illustrate my talk. The content had been written out over and over again and finalized in size 20 bold font in a small three ring binder. I knew after an impromptu presentation to two ladies in the knitting club who were kind enough to stay and hear me talk at the bookstore in tiny Haines, Oregon what needed to happen. They were genuinely interested in me, a stranger who pulled into their town in a shiny new van . The slides and that fancy stuff were not necessary. And because of this first unplanned experience in telling my story, I started to think about speaking events differently. By the last presentation a month later, I got it down to just a smattering of slides and one great dance song. And I talked about me.

I talked about apathy and depression. I hoped to inspire my audiences to turn these challenging symptoms of Parkinson’s into tiny little adventures to be completed one by one, starting as small as changing chairs, or stepping outside the door; anything that the individual chose to do and the Parkinson’s didn’t. The control of mind and body over Parkinsons could then grow into larger tasks and accomplishments. After giving examples of how we people with Parkinson could “take a bad hand of cards and play them well” and turn “every challenge into an adventure”, I concluded by wishing them the “best day of their life”…and that every day could be the best day of their life…so far.

I have definitely had some of the best days of my life so far during this pandemic. Dooley has taken Charlie and I on 3 more road trips and we have met people and been to places I only knew virtually. I have written and drawn and played music and rode my trike in the mountains, at the beach and in the forest.

I have also had some rough days, but they have not been the worst days of my life. These downer days have come from loss. We could write pages and pages of what was lost during the pandemic. what has me thinking this day is the loss of people. We lost Charlies sister, Cece in March. Four friends who had been battling Parkinsons have passed away. Two friends died with Covid-19. And we didn’t really get to properly say goodbye to any of them.

But then yesterday Susan called to tell me that Mick was gone. Suddenly, loss was no longer acceptable. With Susan at his side, Mick had fought Parkinsons as well as other health problems. He was diagnosed around the same time I was. Why am I still here?

Is it because I am given more time, more opportunities to have that “best day ever”

A great need has arisen in me. Bet you can’t guess . That is to practice what I preached during those talks last year.

Have the best day ever.

What does it mean to me. It means to do my best. To give my best. Not being sucked up by apathy and blame my lack of action (or motion) on that. I will work against that cement that surrounds my feet as I try to walk in the morning. I will work on balance so I can stand up tall. I will work on breathing and speech. I will work on getting out of a chair, out of the car, up off the floor. I will climb the stairs, fold the laundry, do the dishes, cook some meals. These activities of daily living are what I can do keep myself active and my care partner less burdened.

Each day will be better than the last. That will make today the best.

The best day ever…so far.

Write your Story

The Ribbon of Road Ahead gave me the opportunity to compile stories of events and the lessons I learned from the events. There are many many, and I will say it again, many more stories I could share about events in the same time period. When I recorded the book in the studio, many of the unpublished stories came back to me. There was something about hearing myself in the headphones that made words come alive. I could see the characters move and hear them speak. I smelled the spray coming from the huge tractor-trailer rigs in the vinyards, and the rough feel of the heavy wool blankets in the albergues in Spain.


I have been told that my book has inspired people with Parkinson’s disease to get up and move. To think that my words gave someone hope has been is unimaginable to me, but true I ‘spose.
So if you have a story in you that needs to get out, put it on paper. I know that takes alot of courage. Sometimes it means you “out” your self from something you have hidden for awhile.

In The Voyage of the Dawn Treader, third book in the series the Chronicles of Narnia by CS Lewis, the character Eustace goes through a spiritual transformation. But first he must embrace the truth of his own brokeness.


After my diagnosis with Parkinsons, it took awhile to get over the shock and accept that this disease was not going away. It wasn’t until I accepted that I was a damaged diseased person, that I could get on with life.


It was in “this truth” that I embraced that I came to a new understanding. And I was able to help others.

“Your story could be the key that unlocks someone elses prison. Dont be afraid to share it.


We learn lessons in our storytelling. And, like the quote, our stories might be just what another person needs to unlock their prison.

So, Tell your stories

Hearing the Church Bells Ring

I stood outside the church door, leaning on the handrail of the ramp.  The silver hearse was parked at the curb and pick-ups and cars were lining up behind to follow it to the cemetery.  I watched as a Volkswagen sedan zipped ahead. A red blinking light attached to the roof alerted me that this was our pastor’s car. (I knew this because I had ridden with him one time) My attention was focused on that unusual light when my eye caught the blue flashers of a police patrol car waiting at the corner to escort the procession of mourners. This wonderful tradition still existed in our small town.   The hearse pulled away from the curb and the church bells, as if on cue started ringing a slow cadence.    Completely alone now, I took off my mask. As the hearse made it to the street the bells sounded, no, heralded the announcement of a heavenly celebration. I was so caught up in the beauty of the moment, tears seeped out of my eyes and down my face.  Without the mask there to catch the tears I could feel them. It is so natural to cry for the loss, but it was an unexpected response to beauty of bells ringing.  I took the tears as a sign …a sign that I was still alive. (sometimes I wondered if I was just bones and skin existing in a pandemic world)

Ernie had left us, yes but had arrived at his destination now and was being welcomed. The bells I heard were echoes resounding from the heavens, I am sure of it. 

Oh Ernie, you suffered so much.  As if a diagnosis of Parkinsons was not enough, you had to get cancer, too.

 I feel a bit sad that I didn’t know Ernie better.  He attended our monthly support group from the very first meeting, unless it was a great day to out to the shooting range. When we are finally allowed to return to the bowling alley meeting room I will look to the spot where he sat.  I will envision his face and especially his smile.  I will hear Donna’s voice.  She was his wife of nearly 60 years.  She came to the meetings even when Ernie couldn’t and was always welcoming, encouraging and comforting.    Donna, I wish I could do something to comfort you now.

Death is inevitable.  Yeppers, but we all have time. 

Yes…We all have time.  Even if it is time of the measured kind, in hours, weeks, months or maybe a couple of years.  There is time, really.

Time to get to know those folks who sit at the same place and order the same lunch on the first Monday of the month at noon… to know them more than just their names..to know what they remember and hope and dream for when they sit alone, listening to that annoying wall clock ticking away the time. 

Time to watch the neighbor’s kids for a few minutes (while they are napping of course) so their mom can catch her breath…and listen to the oldest one sound out words while doing her reading homework. 

Time to pick up the phone and call the brothers and sisters you haven’t talked to in years to say “Hey, do you remember that time…”

How much time does it take to say that “remember when” or “I am sorry,” or “I know it’s been a long time but I want to tell you I love you”

 Ernie’s body may have worn out, but his soul goes on living.

I know it. Look what he did for me today…his “going” made an occasion for those bells to ring.  And the bells ringing made me cry.  And the tears running down my face made me feel alive.  And feeling alive made me realize that since I have time, measured or not, I can do something positive, no matter how small.  And if I do something positive, especially when it’s really hard for me to think happy thoughts or even to physically move to act on them, I will have lived my best day ever (so far).

Thanks Ernie. You were an incredible human being. You used your time well.

I can only hope that the same will be said about me.

Is Helping Others “Medicine”

In my role as an Ambassador for the Davis Phinney Foundation for Parkinson’s, I am asked to complete a survey at the end of each week.  The survey consists of one question and a space for comments

How much do you agree with the following statement?

“I am satisfied with the work I was able to do this past week as an Ambassador.”         
Strongly agree
Agree
Disagree
Strongly disagree

The Davis Phinney Foundation has two major goals. The primary goal of the organization is to be an outreach and educational resource with a particular focus on improving quality of life for those living with Parkinson’s disease today, and a secondary goal is to support the development of strong connections within and among the Parkinson’s community.

Some  weeks I “agree” I represent the goals of the foundation well by keeping myself informed, present and available.  Other weeks I “strongly agree” because of the variety on involvement I have with the Parkinsons  Community. 

The past couple of weeks have been  “Strongly Agree” weeks. In reality, I could have used some help myself, and some of my Parkinson’s friends caught on and did reach out to me.  What kept me going was all the activity where I was able to reach out to others. 

I was hurting from tendinitis is my knees…but wait…my elbow and wrists also hurt.  Is this PD PAIN?  I sneezed like crazy and had a sore throat but no fever…is this Covid-19? My husband was gone a lot this week helping others and I was a bit lonely and grew apathetic…is this advancing PD? And then this happened, I didn’t rinse the soap off my feet in the shower and I slipped and slid into the wall, like I was running for home plate and the throw was coming into the catcher: a perfectly executed slide.  Ouch!  

I had a boatload of stuff come my way.

And I believe this is what kept me upbeat and working through my own physical pain:

  • Local speech therapist contacted me to connect a newly diagnosed person with our support group.  I was able to give information and Every Victory Counts manual.
  • A relative was diagnosed with Lewy Body Dementia and PD. I was able to be a listening ear and counsel.
  • A member of our local support group passed away.
  • Visited with a woman who is scheduled for DBS next week
  • Visited with a mom whose son suspects he has PD
  • Visited with the guy whose mother contacted me
  • Referred him to another ambassador who lives closer
  • Scheduled future activities which I will need to start working on soon:
    • Writing blog post for DPF
    • Representing DPF on a panel of ambassadors to Twitchy Women group
    • Presenting at virtual Lions Club Convention
  • Connected with a neighboring support group member 
  • Conducted a virtual support group meeting

AND for myself I participated in a poetry group and an art group.

I slept really well at night.  I feel like I have moved beyond most of my own pain. I wonder if I would still  have that severe of pain if I had not had the  opportunities to do something for others.

I think the mental activity really helped me get beyond my own physical issues..

What do you think?