Interesting…the next day

We arrived in Colorado Springs about 6 pm, missing the evening traffic. We pulled up to the motel where I had secured  a room for the next two nights.  I sat in the van while Charlie registered.  It seemed like it was taking a long time when  he came out with a mountain of sheets and pillows. I found this to be the “swearable” kind of interesting. 

What’s up?  I asked.

Our room isn’t ready yet.  He answered.

I walked with him to the room and sat down.

This carpet is filthy. I said.

He set the sheets and towels down and went to get a vacuum cleaner.  The vacuum cleaner didn’t work.  I checked the bathroom… the sink had toothpaste spit in it. 

I said: Charlie No, we are not going to stay in this room. 

You are being much too kind.  Mickey Odin would not put up with this.

Charlie gave me a funny look as if he didn’t understand. You have to travel with Mickey to fully understand.

Let’s sleeep in the van and bill them! I said.

I totally meant it.

He left with the broken vacuum cleaner.

 A little while later Charlie came back with another person.  She was telling him about her child who had a brain tumor. I am not sure why they were on that topic. She looked at me and said:

I am not going to make you stay in here tonight.  You  are getting an upgrade.

I replied, I’d be happy with a clean room, a free night and some dinner.

She helped grab some of our belongings and walked us to a two room suite.  By this time the  nearby restaurant had closed down.  Charlie cleaned out our refrigerator in the camper and found items to make spaghetti.  But he couldn’t get the stove to work. Interesting! The desk clerk came in and worked on it and then she called the maintenance guy.  Mind you this is getting on 9pm. I had my legs up on the couch, my  back to  the employees as they   came in and out.  Finally, the stove and the refrigerator were running. 

The desk person  stood and looked at  me for a minute and must have decided I was having a tough time moving. She brought me a can of ale.  While I had my back on the couch and my feet on the wall she  opened the can and put it to my lips like she was teaching me to drink it.

This made it spill down the front of me.  Could this get any weirder? I took the can away from her and managed to get a sip in my mouth.  It tasted very “interesting” as I tried to drink it . With my legs elevated was not going to work anyway. I was grossed out by her putting it to my lips.  I put the can on the far side of the coffee table.

We survived the night! The next day we took a ride around the Garden of the Rocks  (or was it Garden of the gods or some such name). We arrived back at our “cottage” in time for our nephew to come pick us up for dinner.

 I was preparing to change my clothes and a person  from housekeeping came right in the door.  I didn’t hear a knock.   She had a small throw rug in her hand.  She put it down  to cover some bad spots in the floor!  Luckily the bad spots were under the window at a place I would not be walking.  However, on the way out the employee stumbled on some broken pieces of floor tile on the threshold between the living area and the bedroom. 

 “Although this is broken, it would not be a good place to put a throw rug “I suggested. 

Dooley the van was parked right outside the main door to our room.  (did I already mention the living room had an outside door and the bedroom had an outside door.}  There was just enough room to squeeze between Dooley and the outside walls.  If I was a walking to my room I would certainly avoid that path and and walk into the parking lot to avoid getting stuck.

We had returned from our dinner and just gotten into bed. Lights were out and Charlie and I were chatting quietly. 

We heard some women talking. They were very close to us.  In fact they were in our ROOM!


This is not our room.  Says woman A.

You bet its not your room .  Says Carol C.

How did we get in here .  Says Woman B. (they had to work at it because of the van)

I don’t know but you better get out  Says Carol C.

They left .  Charlie locked the dead bolt on the door and we slept through the night.   Getting up for breakfast in the morning, Charlie opened the door. There was our key.  It was right there in the lock where he had left it last night. 

Lets get out of here.  Says Carol C to her husband, driver and care Partner.  AND WE DID!

“Interesting”

Interesting

You all know what I mean by “Interesting” don’t you?

I use it to mean odd, unusual, and sometimes I use it when I really want to say a swear word.

We are hardy campers, Charlie and me. It’s just getting to where we are going to lay our heads that is sometimes the challenge. More on the stress of navigating in another blog post


This night we were in Great Bend, Kansas. We ate a great dinner and felt greatly tired from the rigors of a great day. We had planned to stay in a city park about 30 miles away.


Those plans changed as it got darker. We like to pull into a camp spot in the light. So we started calling, looking for a great place to park in the near vicinity of Great Bend. The second call found a place with space. We followed the directions from a gentleman who made us feel like we were having a conversation with the Dell computer support desk. And the lady who narrates our GPS announced our arrival at the destination (on your right). Where ma’am? Please tell us! We thought we had missed it. It didn’t look much like the RV parks we stayed at before. It wasn’t like any place we stayed at before.
Here were abandoned single-wide trailer houses with broken windows and doors half off their hinges interspersed with newer RVs that hadn’t been moved in months. Grass grew windowsill height around the various Winnebago and Montana branded 5th wheels and travel trailers while the rest of the lawn was cut short.


The roads apparently had once been paved but now consisted of one pothole after another. Instead of a golf cart guide like a KOA, the man who led us to our campsite was driving a spanking new 2021 Chevy pickup (just like the one our son Luke would like to have). I imagined golf carts getting stuck in the potholes, but maybe a beat-up old Ford would be a better choice for this location. We followed him over the curb and up on the lawn and near a post in the ground that had some electrical wires poking out. The guy wanted Charlie to drive the van over the sewer outlet so that the van straddled it. Usually, it is alongside the van on the “service side” where the hose goes. Weird. If Dooley could speak, he would comment on how he felt odd in that strange arrangement. As soon as the man drove off to get a converter for 30 amps, (the power to the pole was 50 amps) Charlie backed the van into the correct position. I could almost hear Dooley let out a sigh of relief.

When I opened the door, the mosquitoes invaded in droves. Believe it or not, this was my first encounter with mosquitoes this year! I could have done without. After he had the van connected to the services, Charlie spent a good amount of time killing skeeters with his bare hands. Ugg, bedtime.

Falling asleep was easy, but at 2 am the pouring rain caused me to wake up and close the windows. I finally fell back to sleep at 4 am. And the alarm rang two hours later. We left this interesting campsite at 7 am and found a Perkins Cake and Steak. I ordered something that turned out to be a very salty starchy breakfast. Interesting. Great Bend was not so great at all.

We drove, or I should say Charlie drove a long way across Kansas and into Colorado. The following two Blog posts will tell the “interesting” events of the next two days.

From pedaling across Iowa to Fishing in Wisconsin: How did these two people with Parkinsons meet?

on solid ground DPF Ambassadors Michael Fahning and Carol Clupny

I wonder what Michael thought when I asked if we could meet up with him during our upcoming road trip. More than that, I wonder what he thought when I asked if he would arrange a guided fishing trip to enjoy together.

Michael Fahning is an Ambassador for the Davis Phinney Foundation for Parkinsons. He has been living well with the disease for 20 years.

I also am a DPF Ambassador. This is not where I met Michael. I actually met him on a social media page where he was seeking information about the Registers Annual Great Bicycle Across Iowa. Having just registered for the week long cycling event and seeing his question come up I typed a quick note. I told him about signing up with Dr. Jay Alberts’ Team “Pedaling for Parkinsons”. Jay was doing research and had discovered how a certain formula of pedaling decreased the symptoms of Parkinsons by 30 percent. Michael was jazzed by the research and by the team and he signed up.

Michael and I became friends on social media sites. Yet you can learn only so much be reading posts. So last Friday night after fishing on Moose Lake we sat by a campfire admiring a beautiful starry sky. I asked Michael further questions about his life. The top thing on his list is gratitude. Michael told me he wakes up every day thanking God for all he has. I learned he is dedicated father to his three (now adult) sons. His deep family ties were reinforced by his recent move to the Minneapolis area. This put Michael in a better housing situation. With that he has his complete immediate family within an hours drive. He sees them regularly.

Michael’s involvement in the Parkinsons community has been long lasting. He enjoys meeting in person, one and one or in small groups. He has helped others by modeling bicycling skills and Nordic walking. And he takes several fishing trips a year! More important than sharing his love of outdoor activities, Michael’s calm nature invites friendship.

I learned how to catch a muskie, how to ride safely in a lake fishing boat, and how reaching out to someone you know a little can strengthen friendships a lot.

i

The Fighters

The first stop on this grand tour was Lewiston

Idaho where I was welcomed by Coach Jennifer Ford and her Lewis and Clark Valley Rock Steady Boxers. This was my first time in a live training session and wow was I surprised at the level of difficulty the workout presented. The strength and endurance these fighters demonstrated showed their commitment to living well with Parkinson’s. I had visited with the support group affiliated with the fighters via zoom in June and vowed to visit in person. I introduced myself as a person with Parkinson’s an author and an ambassador for the Davis Phinney Foundation, as if those credentials meant any thing in their gym. In my heart this group claims top honors in skipping, jump rope, spinning, weights. and boxing. When the workout was done I was breathless and speechless.. We managed a group picture with Dooley and that was it for me. Coach Jennifer is a tough one for sure. But when she said goodbye there was a softness in her eyes that expressed the love she has for this group. Then she was back to her job. I will not forget the lessons learned from these strong fighters. They have motivated me to work harder in my personal fight against the disease.

RSB LCV

kittens

Kittens

We have kittens at our house.  This surprises some of my readers who know that I am allergic to cat hair. I am also allergic to dogs, pollen, dust, sage. Tumbleweed, latex, glue that is used in surgery.  The list goes on and on. In short, I am allergic to almost everything. 

I had eczema, from a very young age until I was 15. This horrible itchy skin condition manifested itself in rashes inside my elbows, behind my knees, in my fingers and toes, and all around my face. It was from allergies, I was told.

How can I stand cats in the house then? Have you ever heard of Benadryl? Loratadine?   Allergy eye drops?  I take all of these and wash my hands and don’t touch my eyes.

Why did we get some kittens?  Mice!   The mice took 5 years to find us.  I am sure they have been looking for us since we moved from the old house.  If they would have just followed us across the pasture,  our mouse worries would have started sooner.

I admit that I have not been particularly fond of cats.

But cats, like many animals like me.

When I visit friends with cats,  the cats come to check me out. Our new kittens love me.  Sitting in my lap or laying across my chest with their head on the neurostimulator for my DBS device, their breath in rhythm with the electrical impulses to my brain.

Where does one find good mousing cats?  Facebook has the answer.  A Facebook friend arranged for two kittens to be delivered to my house.  I asked my husband Charlie to pick up the to get the essentials: litter box,  kitten food, cat carrier. 

The kittens arrived much sooner than I expected.  I kept them quietly contained in their carrier until Charlie returned from the store.   Then all hell broke loose!

It was quite fun watching the kittens tear across our living room. It made me realize why pets, even rescue dogs and cats were difficult to come by during the pandemic.  Their companionship and entertainment value is priceless.

A rooster crowed. The sun rose. Dawn came and it’s the second day with kittens.

Charlie fed the kittens before he left the house.  The kitties got sick.  There was cat poop and vomit on our living room floor.  I got cleaning materials out and then searched for the kittens.  They were much faster than me.  I  reached over and caught one by the leg. In the process I rolled on the floor and came into contact with the lamp cord which pulled the lamp down onto my favorite rocking chair, breaking the glass and leaving a scratch. The shattered glass surrounded me,  the kittens, and completely covered the leather seat of the rocking chair.

Did I say I had shoes on?  Well, I didn’t.

While I was contemplating the situation,  I started to feel sorry for myself.  If this had happened  15 years ago it would be all cleaned up by now.  I just sat there in the mess of glass, cat poop, and vomit, and BANG something happened outside.  That jarred me back to reality. I backed away from the glass to where I had a window view and saw what happened.  Picnic benches that had been stacked on top of a table blew over in a huge gust of wind and had taken the screen door with them.  Now the benches had the screen securely pinned against the glass patio door so there would be no more damage. 

From my position on the floor, I saw something on the screen door.  It was green, more than green.  Long and narrow.  What the heck was it?  My curiosity pulled me off the floor, something difficult for me to do, and I staggered to the patio door.  I saw the largest praying mantis I have ever seen.  While I  examined this interesting bug I was distracted from my sadness about the loss of the lamp and worry about the kittens being sick. My depression about how physically hard it was going to be to clean up went away. 

Shoes on.  Paper towel and plastic bag in hand I finished the floor part of the disaster just as my husband came in the door.  He finished up the glass clean-up and made an appointment with the veterinarian. 

There were no strong words exchanged between me, my husband, the kittens, or their mess.  My husband, who lately has displayed some anger in these types of situations, took it in stride. “Stuff”  happens when you take on the responsibility of pets.  I welcomed that attitude of acceptance and adopted it for myself.

Later, I thought more about the whole situation.

Could I care for a pet by myself? Can I even care for myself?

Go away bad thoughts. You are not going to fill my brain with these stories of “can’t”. 

If the “mess” in your life is overwhelming, break it into smaller pieces.  Invite a friend to help you.  Laugh about it.  Take your time. But don’t let it rule your thoughts.

A Spoonful of Sugar

A Spoonful of sugar makes the medicine go down

Forty years ago I walked into West Park Elementary and introduced myself to the secretary as Carol Kleespies, the speech pathologist assigned from the Education Service District.  She took me around the corner to Principal Stine’s office and invited me to sit down in the chair right outside his door. You know the chair, the priority chair, for priority seating in the principal’s office.

If you have ever been granted priority seating in the principal’s office, you know what I am talking about.

Mr. Stine had a more pleasant greeting to me than those who regularly inhabited that same chair.

School buildings come in such a variety of designs. I don’t know of any districts that re-used the architect plans at that time. Buildings age and can become money pits. The maintenance of the roof being one of the most costly concerns.

When  the largest  district in my area needed to replace a couple of elementary schools, they saved money by duplicating the plans which resulted in twin buildings. I have heard tales of a sleepy speech pathologist  (now hired by the district) mistaking the kindergarten class in the new Sunset with the Kindergarten class at the new West Park.  You don’t know how embarrassing that can be until you’ve shown up in the wrong school on the wrong day.

I have worked in almost all the school buildings in the Education Service District coverage area.  Just as I was leaving the profession, I noticed that as new buildings were being built they included dedicated space fit for the specialists. Matched furniture, sinks, heat, electrical outlets, windows for outside light, a phone line, and later internet helped these important individuals do their jobs. In the old buildings, my students learned to find the “Speech Room”   in broom closets, converted shower room,  the nurse’s office, the hallway next to the music room, and the stage while PE was happening in the gym below. (And my husband adds the little closet next to the boys bathroom that had leaky urinals.) Sunset School had a modular that was a 15-minute walk past 20 classrooms. When the student arrived, they had to turn back around for the 15-minute walk back to class.

I had a great room at West Grade School in Stanfield.

(It should not have been mistaken with the school with a similar name but not appearance, West Park in Hermiston.)

I  had been given half of the modular at the far end of the school.  It was a great room. No sink but the heat worked. There was an air conditioner. The windows and doors opened and closed. And once upon a time, it had served as the leftover furniture room, so I had plenty of chairs.

There was one phone in the school and that was in the office. It was usually during the secretary’s lunch break that I  “snuck” into her office to see if I had any messages.  Oddly, the secretary treated phone messages as they were top secret and kept them tucked under the phone on her desk. If she was away from her desk, I got to read all the phone messages while looking for mine.

 Shortcutting across the playground to the office I passed by the windows of Mrs. Fleming’s first-grade classroom.  There was always one student who spotted me and informed all the others. Maybe this student was assigned to be a “lookout” as a classroom job for the week. 

Fall and winter brought cold wet winds blowing across the playground.  I  put on my ankle-length black raincoat and grabbed my umbrella to begin my daily traipse to the office  The wind funneled through a passageway between the 5th and 6th-grade wing and the library. This increased wind across the playground caught the umbrella just right, pulled it inside out, and tore it from my hands.  The umbrella blew and tumbled until it was caught by the walls of Mrs. Flemers’ classroom. To retrieve my umbrella I had to retrace my steps. I reached down to pick up my flattened umbrella and as I came up my eyes caught the images of 27 little noses pressed to the windows.  One of the windows opened a little voice said “ Mary Pumpkins are you ok?”   Another voice said  “Mary Poppins. She looks like Mary Poppins”.

From that time on Mrs. Flemings class referred to me as Mary Poppins.  If there were a few extra minutes when I visited her class we would all sing “A spoonful of sugar makes the medicine go down.”

The last week of school before Christmas break found students working on projects and gifts for their parents. The speech students were released from having to work with me that that week.  I missed the  Mrs. Poppins greetings .

Near the end of my lonely week I was startled when I heard a  knock on the door. I jumped to open it and in came Mrs. Flemers’ first-grade class.  Each of the 27 students carried a  copy of the story they wrote about Mary Poppins, and a spoon they had decorated for me. The spoonful of Sugar.

What does this  story have to do with Parkinson’s Disease?

A group I belong to, Amy Says Dance,  discusses pie.  No really.  Everyone has a favorite pie and we share that (virtual pie) as we practice our speech while introducing ourselves.  Some members of this group recognize that sugar affects them.  Other members are pie connoisseurs .

Mary Poppins sang about one spoon of sugar.  The average American consumes 43 spoonfuls of sugar a day!

I don’t believe there is a lot of research on the affect of sugar on Parkinsons patients. 

Here is an excerpt from an article I found  referencing the affect of sugar on the Parkinson’s brain. This was posted by Dr Bekky Port in the August 2020 Medium.

. Research has shown:

  • that excess sugar impairs our cognitive and memory skills, and our self-control.
  • the consumption of fructose, another type of sugar found in fruit and which can be converted to glucose, is linked to accelerated brain ageing.
  • a diet high in sugar is linked to increased inflammation in the brain in rats.

Driven by dopamine…

For many people, having a little sugar stimulates a craving for more and sugar has drug-like effects in the reward centre of the brain by activating dopamine production.

We can blame this on our evolution. Sugary foods are excellent sources of energy, and a drive to find such fuel would have promoted our survival as a species back when food was harder to come by.

Dopamine release reinforces behaviours — making it more likely that we will carry out the same actions again. So, when we eat sugary foods the brain responds with a kick of dopamine, encouraging us to consume more.

Unfortunately — in a world where doughnuts, sweets and sugary pop exist — we haven’t evolved past our brain’s love of sugar.

How is sugar linked to Parkinson’s?

Research has linked sugar and Parkinson’s in a number of ways:

  • An increase in sugar cravings may be a side effect of the types of microorganisms (like bacteria) that live in our gut that can change in people with Parkinson’s.
  • Some people report that eating sugary foods makes their Parkinson’s symptoms worse — but this has yet to be proven through scientific research.
  • Diabetes has been shown to increase the risk of neurodegenerative conditions including Parkinson’s.

Research into the impact of diabetes — both type 1 and type 2 — on the brain is a hot topic and the potential connection to Parkinson’s is becoming clearer.

High blood sugar levels can cause the brain to age and shrink. It can also lead to small-vessel disease reducing blood flow to the brain and increasing the risk of vascular dementia.

Well, there we have it. Some good reasons to think before we have that second piece of pie…or my big bowl of  ice cream and my little piece of pie.

I couldn’t image eating spoonfuls of sugar all day, but  basically, I do.  Blame it on the lack of dopamine to prompt my desire for excessive intake of sugar. 

Heres the lLyrics
Mary Poppins:
[Spoken]
In ev’ry job that must be done
There is an element of fun

[Sung]
You find the fun and snap!
The job’s a game

And ev’ry task you undertake
Becomes a piece of cake
A lark! A spree! It’s very clear to see that

A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

A robin feathering his nest
Has very little time to rest
While gathering his bits of twine and twig
Though quite intent in his pursuit
He has a merry tune to toot
He knows a song will move the job along – for

Mary Poppins, Jane, Michael
A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

Mary Poppins:
[Spoken]
Spit spot!

[Interlude]

The honey bee that fetch the nectar
From the flowers to the comb
Never tire of ever buzzing to and fro
Because they take a little nip
From ev’ry flower that they sip

[Spoken]
Mmm rum punch, my favorite.

[Sung]
And hence (And hence),
They find (They find)
Their task is not a grind.

A Spoonful of sugar helps the medicine go down
The medicine go down
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

piles of stuff

Piles of stuff  August 10

There are several workstations around my house.  The office has a desktop computer and piles of papers.  The hallway has a table and chairs and right now has piles of cables and wires.   The kitchen table is a good workstation for drawing. But now I must clean up the piles of pictures so that we can have room for dinner plates.

 When I have to do a ZOOM and look presentable I set up my laptop workstation in front of the large picture window.  The natural light from that location is the best. Piles of notes accumulate there.

 Right now I am sitting in Luke’s Lair.  It is in the bonus room over the garage where our youngest son Luke slept when he lived here. I have piles of stuff, exercise equipment, art materials, several chairs, and a mini-tramp. 

Where does all this paper and piles of stuff come from?  

I must be a stuff magnet attracting more as I make more turns around the sun. Growing older and adding more items to pack around is not working.   Despite my efforts to drop some things off the piles continue to grow.

There are two couples I know of, who live well with Parkinson’s and are dumping their stuff. All of their stuff; houses, furniture, vehicles. The husbands are fully on board with their Parkinson’s afflicted wives. One couple has converted a Mercedes Sprinter van and the other is purchasing a new pickup and an Airstream trailer.  The plan is to live out on the road. 

Different strokes for different folks.

I don’t want to get rid of my stuff.  I want to come back to it.

I have been away from home for about 6 weeks at the longest.  I lived well with one backpack.  I didn’t need anything else.  It was enough.

I am content.  I am happy.  I live in a great house.  I have a super care partner in my husband.

My husband and I are at least 10 years older than these two couples.  Unlike them,  I do not need to get rid of all my belongings.  I can travel to get away from my “stuff” and come back home to it when I am ready. Condensing the piles before I leave will fool me into thinking  I don’t have so much.

I fall.  I am stiff.  My handwriting is illegible. I have poor balance.   My right hand tremors.  Sometimes my thinking is a little crooked.  Most of the time I feel like I will live through the day.

With all I have collected through life, there is only one piece I would throw away for sure.

I have tried to ditch it in the past, it has found its way back to the piles around me.

It’s the belief that my work, my projects, my book, my narration, my drawings are not good enough.  Although I have been validated time and time again, by numerous people, this disbelief is one piece of stuff that hangs around.

I can live with all the piles.

 I am hoping that I can live with this one piece of stuff, though,  until I am ready to let it go.

Dads

My steps through the sand and grass were slow and deliberate.  I held in my left hand a spinning rod and used my right hand to balance on air.  Charlie, Luke and I hired a guide to take us freshwater fishing.  We followed her, single file across a thin slice of land created by an oxbow in the Salmon River. 

I had a sensation that stopped me in my tracks.  It was my dad.  He was there walking with me, with a fly rod in his hand. 

“Charlie, dad is here”

“Of course he is here”.  Charlie replied without really thinking.  “He came here what, twice a year for as many years as I  knew him.”

“No, I mean he is really here, now”.

I had not felt his presence so strong since the day he died 8 years ago.

We followed the guide down a short bank and onto a sand spit.  I took the line in my hand, flipped over the bale and cast out.  As I reeled in my eyes caught the shiny spinner come back through the clear water. I had expected my dad to say “cast a little further out” but Dad was gone.  He had walked onto his favorite fishing spot.

 I turned to the guide.  “Do you know who owns Gustavus Lodge?”

“I do. But they are selling it.   My parents came here every year.  And when I was 15 I started coming here.  I started guiding”.

“My dad came here so often, he didn’t bother to take his boots and his raingear home”. 

“My parents left their gear here too. I wonder if they knew each other”

Mental calculations told me she had probably not met my dad.  But her parents may have.

Michelle from the Bear Track Inn came to pick us up from the fishing excursion.   

Michelle married into the Onley family.  Her husbands’ father and mother built the Inn in this beautiful meadow.  As an engineer, her father-in-law had all the necessary skills to make this place a destination in itself.  He was gone now, but  his wife Jane was still at the Inn every summer, June through September.  She hoped to leave  for the last time this fall and spend her time in Hawaii.  Michelle would be filling her spot.

Michelle and I shared short conversations as I sat in the front passenger seat. She drove us down dirt roads to get us to our activities.  I learned that her own father had died with Parkinson’s . Her closeness to him as she was growing up changed as she got older.  She didn’t understand why. She loved him dearly, and he loved her.  But when it came to his Parkinson’s, he did not share what he was experiencing.  He called for her to come home when he knew the end was near. And when he was gone from this world Michelle realized she knew very little about how he had lived with Parkinson’s.

 She watched me, and I felt she was more than observing me.  She was absorbing me, comparing me to what she saw in her dad.

Monday  morning  I had a zoom meeting with a Parkinson’s support group in San Diego.  Michelle and her mother-in-law  Jane took me to a residence on their property where I would not be disturbed.  As I set up my computer on the kitchen table, I invited them to stay and listen, and Michelle did.

I talked for about an hour.  And when I was done, I turned to Michelle.

“You were a good sport to stay and listen to all this talking about Parkinson’s disease”

She put her hand across her heart and in a soft voice she said

“I never knew all these things my dad was going through.  Your talk helped me understand how the disease affected his body, why near the end of his life he was like he was.  Thank you for sharing your story.”

I thought about my own kids.  They live so far from us that when they see me once a  year at the most, my body had changed.  Do they notice?

I don’t hide from them.  But I don’t tell them the intimacies of the disease either. 

Will they be like Michelle, somehow sorry they didn’t truly understand what neurodegenerative means.

Who holds the responsibility? The parent who suffers silently through years of the disease.  Or is it the child who doesn’t ask the questions.

Michelle drove us  by the Gustavus Inn on the way to the  airport. 

I saw a man walking on the gravel drive to the main building.  He wore a faded red sweatshirt, baggy jeans, and a floppy old fishing hat.  In one hand he had a fly rod, and in the other he held a creel.  He set the heavy basket  down and I caught a glimpse of his face.

There he was. My dad,  in his heaven… and on his face… a smile.

Glacier Bay, Alaska

Glacier Bay, Alaska

(author’s note: this story parallels “DADS”. Please leave a comment as to which you like better)

Finding a secure place to put my foot became more challenging. Sandy soil gave way and I had to consciously think to pick up my feet.  Step high, step big. Darn Parkinson’s.  It was not going to spoil this.

Charlie was nearby, and Luke was ahead of us, walking with the young female fishing guide the Inn had recommended for the last adventure before we were to leave Gustavus, and the Glacier Bay area of southeastern Alaska.

 My dad.  He walked by me, passing slow  me on the trail.

 He had been gone for 7 years now, but I felt his presence as strong as the day I last saw him.  December 14, 2014.  The last day I held his hand and stroked his forehead. The day he passed away.

Charlie, I said.  Dad is here.        

Of course he is.  This place was heaven to him.

I just felt him, he walked by me.

Ahead, Natalie paused, she stepped off to the side of the trail, her eyes trained on a spot where the river was wide and shallow.  She had many years experience spotting wildlife, even though she was just 23. She scanned the riverbank, searching for something.   We caught up to her and Luke.

 My dad came here, Natalie, alot.  Two, sometimes three times a year.  He stayed at the Gustavus Inn. A week at a time.

Its closed now.  They owners are trying to sell it.

 He came so often he left his rain gear and his boots here. I wonder if he walked along this river.

 My parents came to the Gustavus Inn every summer. That’s funny. They left their rain gear here too. When I was 15 I started work as a guide.  I wonder if I ever met your dad. 

He was just here I almost said out loud.  I should have introduced him. To meet a pretty young guide would have been the highlight of his trip.

She stepped back on the trail.  We continued our walk along the riverbank and back to the small parking lot where we had met Natalie earlier.

The van that had dropped us off was waiting. We took some photos and I climbed in the front passenger seat.  Our driver was Michelle, one of the family that owned the Bear Track Inn where we were lodged.  She wanted to know all about Natalie and if we would recommend her to other guests.

As we drove away, I looked to the left and saw a white lodge, the Gustavus Inn.  So this is where dad had stayed on many of his fishing trips to Glacier Bay.  I had never seen it in person but recognized it immediately from descriptions and photos.  An older fellow with baggy jeans, wet to the knees and a faded red crew neck sweatshirt sat down on the porch’s rocking chair.  He pulled one boot off and as he dumped water out of it he looked up and out at the road. I lost sight of him and the lodge as the van gained speed on the blacktopped road.

Of course my dad would be here.  Glacier Bay is a fisherman’s heaven.