The after-dinner nap was going well.   I was deeply into it on a very cozy couch.  One pillow was under my head and the other was over my head, dampening any sound that might keep me awake.  In my dreams I saw whales, dressed patriotically in Evil Knievel bike kits, jumping in and out of a little aluminum trailer.  The trailer was behind a 90-foot motor home with a sign on the front that said “formerly owned and well used by the band ALABAMA.”

The whales had changed back into their black and white bikinis when I sat up, awake or so I thought.  What was that sound?  I was standing smack in the middle of the movie THE BIRDS! These were not the average sparrows flying outside the window.  I saw hundreds, maybe thousands of seagulls had taken to the sky in frenzied flight. One of the white and grey seabirds had the audacity to fly directly to the railing of the balcony, not three feet from me, for a stare down.

The sound of that many seagulls together deafened even the roar of the waves.  They landed on the rocks at the edge ocean cliffs, now about a hundred yards from me. I relaxed with their distance.  PHEW, glad that is over, I thought.  But no, it wasn’t over. They got all wired up on secret sea air and I witnessed a replay.  The squawking began and hundreds of seagulls made the loop and landed.  But there didn’t seem to be as many perched on those precarious rocks.  I turned to get my camera and off they went.

One of the larger ones, probably the one that came before and stared at me, headed straight for the open screen door.  That would have been an interesting call to the front desk, “Uh, Hello.  I have a giant seagull in my room can you send someone up?”  The seagull veered of to the top of the roof so the call wasn’t necessary.

The frenzied seagull ritual continued. Every 15 minutes of so, off they would go.

The number that landed on the cliff in front of the condos kept diminishing, I decided that this must be their bedtime ritual.  In the early rounds, I observed fewer of the younger seagulls returning.  They had been dropped off at home, brushed their teeth, put on the pj’s, had a story read to them and gone to sleep like good little seagulls.  The adults then returned to the party rocks outside my window for more fun.

Oh, my goodness this had been going on for 5 hours! Around 10 pm, the final sunlight had faded into the horizon. The birds gave it one more rally.  Those die hard party seagulls gave a tired squawk and rested their weary bodies on the rocks.  There were maybe ten left. If this was their home they had one heck of a mess to clean up in the morning.  Apparently, Seagulls don’t leave around beer bottles and cigarette butts after parties like  humans.  They leave feathers, crab shells and bird poop.  Inches and inches of bird poop covered the rocks.  I was going to suggest they could borrow a carpet cleaner from the condo maintenance crew, but I thought that might cause problems with their bosses, as there was a lot of bird poop at the condos to be cleaned up also. Maybe the gulls could rent some cleaning supplies at ACE Hardware.

Time passed.  noticed all was silent on the seagull front and I dozed on the couch. I hardly closed my eyes when at 11 pm I was startled by a very loud squawk, too close to my open screen door for comfort.   Several other voices joined in and the remaining seagulls packed together in a mob and headed for the open screen door.  I grabbed a pillow in defense and hoped to beat the birds to close the door, stopping short where the biggest bird was perched on a chair. I started beating it with my pillow, it did not budge so I hit it harder and harder.  I heard “CAROL STOP IT. What are you doing?”  Charlie took the pillow out of my hands and wrapped his arms around me.

The sun was streaming in the window and a sandwich was scattered across the floor.

This fictitious story was brought to you by REM sleep disorder. Rapid Eye Movement is a stage of sleep when the body is paralyzed, and the person cannot move to act out their dreams.  Some people with Parkinson experience a disordered sleep cycle where they act out their dreams, mostly in a violent way.  For some folks, this behavior lead to their diagnosis.

My July Journey started out pretty darn bumpy. On the last day of June I was fitted with an ankle brace and orthotics which improved my walking and so far decreased the significant pain from calluses on the bottom of my feet. That is a big HURRAY!

The new items were very comfortable and I must have worn them longer than I should. Because today, I felt horrible! WHY?

I don’t want to compare myself to an old pickup, but this is  what makes sense to me…

You buy an old pickup that been stored inside for awhile. Its exterior looks pretty good for its age. But there are some leaking seals, some hoses and the battery  needs changed out. So you start to work on those things, adding some new and some used parts and the pickup starts having more problems. The additions, although very good in getting that system running have placed pressure on some other old parts that were very happy running just the way they were. So those old parts are complaining.

Yeppers, my old parts surely complained last night.

On and off, I woke with cramps in my calves and thighs. I was sleep talking about them last  night. This concerned my husband, because I generally am a pretty quiet sleeper. He tucked my security blanket  around me and we both fell back to sleep. I woke up with a jerk, the room blazing with sunlight and me soaked in sweat. I could hardly move. My body was sore and I felt tilted like the leaning tower of Pisa. I couldn’t talk or walk very well. I put the brace and my shoes on, and my body felt the change and threw my head into confusion. Within a little time of taking the 7am meds, I began to function and made it through 30 minutes of AMY SAYS DANCE and 60 minutes of high intensity workout.

I wore the brace for 4 hours again today.  I feel ok right now, just really fatigued. I have placed a fair amount of hope that this new attachment to my body will bring some  about improved quality of life.

After all my chassis is still sassy and I want keep moving.

 

 

 

I am”… I said
To no one there
And no one heard at all
Not even the chair
“I am”… I cried
“I am”… said I
And I am lost and I can’t
Even say why
“I am”… I said
“I am”… I cried
“I am”

“I Am… I Said” as written by Neil Diamond © Universal Music Publishing Group

 

I told my friend Nan Little that I am a very different person than I used to be. She responded “No, you are the same you. You are just more you“. I disagreed. “I really believe  I am changed.”

While we were camping last week, I spent some time listening to old Neil Diamond songs. This  CD was full of  sad, sappy love songs. The lyrics above stuck in my head for days after I heard it. “I am”… I said “I am”… I cried “I am”….   me!  I don’t feel lost, but I do feel as if no one is listening.

As I let these lyrics roll around in my brain I realized I no longer disagree with Nan’s response. I become more “ me” each day. As my skin is weathered and my hair shows silver strands, I put aside the beliefs about myself that took me nowhere. And let myself  open up to the beliefs that brought me to who “I am”  today.  All those beliefs, those  thoughts, I didn’t change. Rather I acted differently for some of the “me” than some other of the “me.”

I am who I am supposed to be. I am where I am supposed to be. Not just in this moment of time but forever.

No. I am not changed. I am enough. I am more than enough.  I accept what has been given to me and give back as I can.  Even this disease is a gift. I give from the wealth of Parkinson’s, not passing on the disease….heavens no ! But sharing  the lessons I have learned. Are you listening?

” give and it will be given to you; good measure, pressed down. Shaken together running over,  they will pour into your lap. For by your standard of measure it shall be measured to you” Luke 6:38

What you give will be returned to you a hundred fold.

 

Neil was diagnosed with Parkinsons in 2017, I believe.  As with most public figures he kept it quiet for awhile.

Getting hit in the face by a flying object:  a good way to get to know someone.

 A wonderful array of camping type hor d’oeuvres was spread across the picnic table.  Prosciutto, crackers, rye bread, smoked salmon, cheese, fruit and even foie gras! (although I don’t think we got into it) Beer and wine was available.  Special plastic wine glasses with the note “some assembly required” on the package incited conversation on the taste of wine influenced by what it is served in.  The beer drinkers tipped their bottles in agreement…glass is best.

Charlie and I were seated at the appropriate social distance of 6 feet with our new friends Laura and Paul.  The Deschutes River provided a wonderful backdrop for our meeting place; the entire park a luscious green with families of geese floating by on the river.

Laura and I became acquainted as one of us started commenting on the other’s blog.  We both have Parkinson’s disease, memory can be an issue, and neither of us could remember.  We found in each other many commonalities in addition to the blogging.  Travel, camping, music, backpacking…there was a world of things to talk about outside of Parkinson’s.  Laura was intrigued by my unique blogs.  I liked her humor and the accurate information she provided.

The wind picked up a little.   Engaged in conversation we did not notice it was becoming gusty, until WHAM!  Something had smacked me right in the face. Glad it wasn’t a wine glass or a beer  bottle, I pealed  off a corner to see Charlie working to get it off me, too.  Paul was attempting to save the prosciutto from the spilled wine.  Laura joined the action to grab part of the item covering my face.   She realized it was the new tent she had put up earlier to practice for an upcoming backpacking trip. The force of the gust of wind against her tent pulled the stakes right out of the ground.    She needs snow anchors I thought to myself.  The incident alarmed her but she handled it well.

“Well, Laura, that’s the first time I have ever been hit by a tent during cocktail hour.  I will never forget this.”

I took a good look at myself to assure I wasn’t hurt.  For having been hit in my face by a flying tent I was in good condition.

To provide humor and distract from the awkwardness of the event I told the story of hitting Sr Mary Ellen in the face with a boys size 13 basketball shoe.    I am saving the rest of that story for another time!

The Goulds and the Clupnys parted ways the next morning. We left the Deschutes River knowing we have new friends and a wild story about a tent flying into my face.

The river

I want to tell you  one of my childhood memories. But along with it comes a geology lesson, my view of the river and thoughts about the present state of our country.

The childhood memory becomes very vivid when I encounter these components:   The Columbia River, a windstorm strong enough to make whitecaps breaking over small swells and a barge going upriver.

In the 1960’s My parents purchased a 16 foot  Sabercraft ski boat with a 100-horse Johnson out board engine.  It was an indulgence they thought would provide years of family fun. My sister and three brothers were breaking into their preteen and teenage years and I was the littlest and would be around the longest to enjoy it.  The Columbia River was the most logical place to take the boat.  It offered endless recreational opportunities and was about a 45-minute drive from our family home in Walla Walla.

The maiden family trip would not be disrupted by a little wind and white caps on the river.  Dad put up the canvas canopy and securely snapped it into place.  He launched the boat off the trailer and when it was docked mom and all of us kids piled in.  Dad drove the boat at the no wake speed out of the harbor and then he gunned it, which made the bow rise high until he had it “planed” out and level.  The boat hit the swells with a thud but that just seems to make my dad wilder. He spotted the barge pushed by a tugboat coming upriver.  Huge waves were breaking across the front of the barge and the tug leaving a 4-foot wake.  He took our boat with his family across those wakes at too fast a speed.  After being launched in the air our little Sabercraft came down with a hard thud that caused us all to come up out of our seats and hit our heads on the canvas roof.  The engine died. The barge pilot must’ve looked back and seen us and we heard a loud blast of the tug’s horn.  With the engine restarted and all children checked for damage,  Dad gunned it again and drove the boat back across the wakes to come alongside the tug, waving his hand out the window at the pilot and speeding past.

You can see why this is childhood memory easily comes to mind. It was a scary thrill.

The Columbia is an important river to the Pacific Northwest. It is over 12,000 years old and had its origin in the great Lake Missoula flood of the Ice Age.

Stick with me here, this geology lesson will be short.

Western Montana was covered with a lake about 2,000 feet deep.  An ice wall built up blocking what is now known as the Clark Fork River.  The rising waters behind it weakened the wall and water burst through sending rocks, ice chunks and debris downstream which  left ripple marks on canyon walls and dug out the channeled scablands of eastern Washington and the Columbia River Gorge.

Our family used that boat for many years.  When everyone was grown up and out of the house but the youngest, me, the purpose of having a boat changed.  My dad sold off the little Sabercraft for what he paid for it and bought a 25-foot Bayliner with a underdeck cabin. It was his ocean bound fishing boat.  There are many stories about his driving this boat over the Columbia River Bar and into the ocean.  We also had many good times on the Columbia River near us. Charlie and I lived about 10 miles from the river and helped my aging parents launch the boat with its 400 horse VOLVO engine. With Charlie as the pilot and me as the deck hand we crept out past the no wake zone makers,  and he would gently urge it into higher speeds.  Much more relaxing than my dad’s driving.

 

The Bayliner was sold years ago.  Both my parents have passed. But the river, the winds and the waves remain.  The basalt formations revealed by the grating power of the ice aged floods still fascinate me a do the birds, the fish, the wind and the waves.

This mighty river once flowed free.  Salmon flourished as did animals that came to the river to eat the salmon.

The interference of man has changed the river and its surroundings.  The huge Grand Coulee project brought irrigation and electricity to the region.  More dams were built.  More water taken from the river, more control of the flow for electricity.  And the salmon were almost lost to us.

My sis-in-love Mary visited us this weekend. She is an avid kayaker and we planned to hit the water.  A freak storm with high winds and lightning nearly ruined our plans. I kept a vigilant watch on the wind speed, and Sunday I saw it dropping by the hour.  We loaded up the kayaks and headed to McNary Beach which is just upriver from McNary Dam.  As we looked out on the water, we saw how wide the river is at this place.  It is Wallula Lake, the water that is built up behind the dam to be spilled out or run through the generators for electricity. With our little 10-foot boats ready, we paddled upriver hugging the shoreline.  The wind stopped; the water became flat.  It gently lapped on the basalt lining the shoreline.  Canadian geese flew overhead.  Flowers grew in bunches just off the small sandy beaches.  Tiny silver fish jumped around us. A coyote stalked its prey on the bluff above the river.    Deer came to the shoreline to drink.  There were so many things to see, to feel, to hear.  My senses felt overloaded.

There is such diversity in this place. In the thousands of years this river has cut through the cliffs, the land, the basalt rock, the vegetation, the wildlife has co-existed.  They live in benefit of each other.

We saw none of this when we drove into the park.  We only saw a big river.

When we drove out of the park I looked back.   I no longer saw the same river.  I saw flowers, and little fish and deer, the rocks that jutted out and the trees growing along the banks.  And there, a salmon surfaced.

If only we saw individuals.  If we did not see race.  If we saw every  human being as unique; that we truly need one another to exist…what if…..

Dear Lord, can we have another chance?

Written March 1

There were many games played by the batch of kids in our neighborhood.  Between Berney Drive, Celestia Drive, Wallace, Trimble Road and Delmont street, there were three girls and at least and dozen and half boys.  When a large group turned out to play “Ditch em” was the game of choice.  It was the team version of the “Hide and Seek” game we played when only a few turned out.

In Hide and Seek, the “finder” names the “home base”  and counts to ten while everyone else scurries to find the best hiding place.  They stay hidden until the finder passes by them and then they make a run for the home base.  If the finder tags them, they become “it” in the next round.

How does this correlate with the virus that has invaded our part of the world?  Right now we are playing Hide and Seek.  Here in Oregon, the Governor has shut down schools and any school-based or community activity where over 250 people may be together.  It’s hard on our small communities, this being the St Patrick’s holiday and all events canceled.  Social distancing, where two people do not get closer than 3 feet from each other, has been declared a necessary approach to fighting the virus, as has hand washing and “Not touching your MEN” (mouth, eyes, nose).

What started as the smaller Hide and Seek from the virus has turned into a full out game of “Ditch ’em”.  Those parents who are still working cannot just “ditch” their kids.  Grandparents who may have been called upon to watch the children are now the most vulnerable to infection.  Assisted living facilities are on lock-down with no visitors in and no residents out.  Incarcerated people are susceptible to disease transfer, living in such confined quarters. As more people become ill with the virus, they will unknowingly infect others. Waves of sick people will come to already full hospitals. What happens when the hospital staff become ill?

The stock market drops.  The government discusses economic boosts to the airlines (what about cruise ships?)  Flight crews, attendants, ground crews, food service … thousands of people in this industry alone are out of work.

More and more players are joining in the game.

Hide and Seek .  Will we ever find the way out of the game?

our friends house

written May 30th

We certainly made the best of a stormy situation. Charlie’s sister and I watched as the wind took shingles off houses. We saw a lot of snapped tree branches flying through the air and decided we really didn’t need to go out and save the BBQ. The wind increased in velocity and pulled more trees up by the root, tossing them on neighbors cars and against their houses. Charlie came home and announced we were having company for dinner as our friends’ house has been damaged. Of course we had no electricity to run the oven, but we salvaged the BBQ from its wreck on the back porch and moved it to the sheltered front porch where it pumped out just enough heat to cook up ribs and corn on the cob. We laughed through our candlelit dinner, and even harder when we had our dessert as our rummy minds spewed out hilarious combinations of words, totally by accident and some possibly inappropriate. With bellies full and voices hoarse from the goofiness our friends took advantage of a lull in the storm to head home. The house is quiet now, well built, solid so when we are inside we feel safe. We do not hear the wind outside.

Show up

Do I need to bring anything?

No. Just show up.

“Parkinson’s disease is a disease of the brain” Davis Phinney Foundation Ambassador Edie Anderson’s Dr. told her upon diagnosis. Edie used this same phrase with her physical trainer when he suggested a balance exercise. She wondered how that would improve her symptoms. Trusting that he knew what he was doing, she showed up at the gym and after a few months improved her one-foot balance time from 3 seconds to one minute. We all know how significant balance is to a person with Parkinson’s. (Living Well with Parkinson’s virtual Victory Summit, Omaha)

A long time ago, when the world was “normal” I wrote about having some “tools” handy. I might need them if I got myself in a mess like falling off the step into a pile of cardboard boxes, getting up off the freshly mopped kitchen floor where I just landed on my behind or getting out of a deep bathtub in a convent in Spain where I was the only houseguest and the nuns were already secluded for the night. These kinds of events are things you cannot train for! Maybe If I lived in the jungle, I could use some Jimmy Choi, the American Ninja Warrior with Parkinson’s moves to swing from tree to tree. In reality, I live in a desert and I can hardly do a chin up, yet.

More recently my blog post titled “Lessons Learned from the Ladder” reminded me that what I do now in the way of exercises (physical, mental, and spiritual) will affect my future. It takes some level of physical strength to hoist myself out of my kayak (maybe about the same as a deep bathtub), so it’s important to keep exercise up. In the movie Titanic, two scenes come to mind. One is the scene where the band is playing as the ship sinks. What discipline they had to continue! They were experienced musicians, familiar with their instruments, playing standard songs that they had memorized years ago. They had the discipline to stay at their post. In another scene, the ship is listing to the side as a priest leads a small group of people in praying the rosary. (If you do not know about the rosary it is a reflection from the birth through death and resurrection of Jesus.) There are three prayers used in the rosary that Catholic children memorize and grow in understanding as their intellect matures: the OUR FATHER, the HAIL MARY, and the GLORY BE. The people gathered with the priest on the deck of the Titanic resorted to those rote prayers to bring them comfort and to connect them with God. By the rote memorization from childhood, they had a tool they could fall back on. The familiarity brought a calming effect.

I developed some “practices” during the pandemic. These practices help me to develop the “tools” needed to get out of deep bathtubs or get myself going when I feel like becoming a permanent fixture on the couch. The biggest tool was to keep to a routine. During the routine of my day I did these things, not necessarily in this order: Get up at 7 am. Reach out to one person in a low-tech way (phone call, write a note, drive-by or ride by their house). Exercise. Take some quiet time for reflection. Go to bed at a decent hour. Take my medicine as scheduled. Participate in online groups such as AMYSAYSDANCE. (Facilitated by Amy Carlson, Davis Phinney Foundation Ambassador)

But the most important practice was that I “showed up”. By “showing up” for my day no matter how bad I felt, I experienced some relief from my issues and got something accomplished. Having a fun activity at 8:15 AM helps. For example the other night I had weird spasms and my legs cramped horribly. I got the cramps settled down and took a warm shower. I showed up for AMYSAYDANCE and danced like a crazy fool. After that, I was able to participate in my morning boot camp boxing workout (Kimberly Berg kimberly@rebelfitclub.com). And I managed a bike ride in the afternoon. Just because I used the tool of “show-up”. Today I had another “just show up” day. I had a terrible sinus headache. Four extra-strength Tylenol, two cups of coffee, a Claritin, and finally a Sinutab got rid of the headache but made me sick to my stomach. After “showing up” I was able to do 45 minutes of my 60-minute-high intensity workout and after a short nap and a bite to eat, I am finishing this post.

If you do nothing else, show up. The discipline of showing up is just one tool that can lead to other useful tools. Who knows, you may just find yourself stuck in a deep bathtub in a Spanish convent and the strength you gained from all those bicep curls from class to get you out.

 

May18, 2020

This is an undated entry.  I think I wrote it in March 2020.

No, you can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometime you find
You get what you need

Songwriters: Keith Richards, Mick Jagger

© Abkco Music, Inc.

 

My current health situation does not reflect that of poor mother earth and her inhabitants.  Although my personal wellness is not in question, there are many people in dire need right now.  I want very much to do something.  I want something big to happen, so everything will be ok.  I don’t like this new “normal” or the newer “normal” that appears every day.  This spoiled princess brat wants what she wants and she wants it now! I want the old “normal”.

I find it really easy to give up.   I can slip into an apathetic state and not want to do anything.  What I realize I need to keep at it, keep trying, keep living as close as I can to “normal”

I need to put  my nightclothes on at bedtime, and shower and dress in  day clothes on for the day. I need to get up at a decent hour which means going to bed at a decent  hour.  Keep my medication and meals routine.  Eat as carefully and cleanly as possible  (ok the blizzard I had last night doesn’t count).  Brush my teeth, brush my hair, wash and wash and wash my hands.

I need to reach out to other people, by phone if possible.  I called one friend to hear her say “hey you are on my list to call”.  Its not only good for me, but good for others to hear a real live voice.

I need to get fresh air by going outside or even just opening a window. Exercise is so important, especially if I want to maintain health.

Because of trying to keep things normal, I am getting what I need.  I am having conversations that count.  Thanks to ZOOM I am drawing with Lorraine in the Sketch class, dancing with AMYSAYSDANCE, cooking and cleaning like I haven’t done in years.  I am reading out loud for Madonna Bradys radio show. And I have started writing again.

Not one of us is getting what we want right now.   I believe by keeping things as normal as possible, and trying, not sitting and spewing or grieving but really trying, we can get some of what we need.

What do you think?