Besides being super brainy, a great dancer, a storyteller and an artist. Amy has a huge heart. She has surrounded herself with people who she loves and love her. They have been together since March 13, 2020. They show up for her, for each other and for themselves. They show up every day around 8:15. No one has to knock to be let in. They let themselves in, into their little boxes. AND they dance, and they take time to breath AND THEN they talk, and they listen. AND they really really would like to hug each other. But they can’t. They are locked in their little boxes by the pandemic.
Today is Thanksgiving. This Thanksgiving has more hype around it than any other Thanksgiving. We have been told by government officials to keep gatherings small. Don’t travel. Don’t spread that covid-19. Don’t gather with your loved ones. If you see more than two cars outside your neighbors house, report them. So much negativity around a holiday named “Thanksgiving”.
They showed up today. About 15 of them, at Amy’s house. They gathered in her garage and found their way to their little boxes and danced and sang “You can tell everybody this is your song….how wonderful life is with you in my world” and “Thank you for being a friend…” They took a few minutes out to breathe, just breathe. And then Amy asked for words meaning gratitude and they heard each other say: honor indebtedness grateful gracious appreciative heartfelt beholden… .. And they spoke of their gratitude and their intentions to express gratitude. There was no negativity, no fear, no loneliness, no self-doubt. Because if there was, the love flowing from Amy’s big heart and beaming from her smiling face would chase it away, just as any sad feelings in her world be diminished by the reflections of love coming back at her.
“its Thanksgiving” she said. “and you came”.
Yes we did Amy. In gratitude, honoring each other, indebted, grateful and appreciative, with heartfelt thanks and beholden to many.
I know the reason a teacher would want to be assigned to a kindergarten, first grade or second grade class. By third grade most students are reading to learn. In these earlier grades, as children learn to read the magic of words comes to life. Have you ever watched a child’s eyes light up when she discovers those squiggly lines on paper match up with sounds coming out of people’s mouths. It’s truly a magical moment.
I don’t remember the day when words printed on a page first made sense to me. I do remember reading voraciously as a child. Mom would take me to the Carnegie library to choose several books. I poured over those books for hours every day until it came time to return them to the library. I reluctantly put those cherished stories in the book return box. Sometimes this made me cry. When I reached school age my mom would buy me a few books from the Scholastic book order flyers sent home each month. Soon, I had my own little library.
My high school had a small library. I vowed to read every book in the two shelves of fiction by the time I graduated I had to read over the summer, but the school librarian had a pleased smile when I returned the stack in the fall. And I met my goal.
Almost 50 years later I have great difficulty reading a novel. My concentration fades after two or three paragraphs. My attention span for reading and decreased motor movement in my eyes are undoubtedly caused by Parkinson’s Disease.
This is strange as I wrote a 294 page memoire. And currently, I am narrating it into a totally accessible audio book; print words accompanying the narration. Because of my choice of audio formats, each word I narrate into the microphone at Opal Studio in Portland must match exactly with the printed book. I am in my sixties. I have been diagnosed with Parkinsons for almost 13 years. At one time my voice was very quiet and I ran out of air to speak more than just a few intelligible words at a time. After a deep brain stimulation procedure in 2016 my voice started to come back. When I was encouraged to narrate my own book, I thought the idea crazy. But I set a goal. Practicing breathing techniques seemed to improve lung capacity. My enunciation of multiple syllabic words was strengthened by working in “Voice and Articulation Drillbook” by Grant Fairbanks. First published in 1939, it showed that some things never change. I built up my out loud reading time from 5 minutes to 45 minutes a day. By the time I arrived at the studio on Nov. 9, I was as ready as I could be. I made many mistakes. I tried to go back and correct them at the moment, but one day the producer told me I had 400 “pickups” to do. I stuttered, mispronounced words, read too fast, slurred, didn’t show enough emotion, showed too much emotion, swallowed, yawned, made a noise when I scrolled a page. Yikes! She had diligently listened to each word in the book and now it was my turn to correct them. The engineer, Kevin played the two sentences before the “pick up” and I read along out loud trying to match loudness and tone. He faded my previous narration and I kept on reading. When I was done, he played the following sentence to be sure we had matches on both ends. Before long I became an expert at “impersonating” my own recordings from a week ago.
As of today, I have one more session in the studio. The recordings will be “mastered” by the producer. The book cover will be updated. And then…it will be alive and available.
Like the child experiences magic over discovering she can read, I am thrilled beyond measure. Each time I hear the small sample of completed work, my eyes sparklef from the tears wanting to leak out, and my face glows.
The Camino walks, cycling RAGBRAI, writing and self-publishing a memoire, and now this. Parkinsons, my spirit comes out ahead again!
Autumn came too quickly. Last week, I think it was Thursday, a heavy frost was forecast. Charlie went outside and picked the peppers and tomatoes that were still eeking out an existence in the fading hours of sunlight…sitting in the pots and buckets that were this year’s garden.
And then, it happened. The wind stopped. The sun came back. With a good day in the forecast, Jill asked me to come along to the river, where she and Anne planned a kayak outing. Jill asked where I wanted to go. I said “across the bridge, down that little road by the place where the gas line goes under the water and from there we can paddle to the islands”.
By the way, in case you don’t know, Anne and Jill are two of my adventure friends. They know how to make any activity doable for me even if I am having an especially bad day for Parkinson’s. They can put me in and take me out of the kayak and make it a funny event so I don’t need to feel bad for relying on them. Special kind of people.
The islands, if you can call them that, were a collection of rocks jutting out of the shallows near the north bank of the river. There was some soil supporting a bit of vegetation where in the spring the pelicans laid their eggs, and herons rested their long legs while watching the tiny fish swim by. This is how I remembered the islands. This is what I was longing to see.
We went with the current, paddles lightly dipping in the river, no hurry. The conversation matching the ease in which we moved downstream.
“I am heading to checkout these rocks” I said, not realizing they were what was left of the islands. It used to be such a familiar place, now it seemed strange. The water was higher and had covered the islands, leaving just the tallest parts to show what had once been there, what I was looking forward to exploring. The pelicans had left, gone to their winter homes. A lone blue heron flapped its giant wings and flew off, just a few feet above the glass- like river.
Scrape. I hit a rock. I looked down into the surprisingly clear water to see rock formations and water grasses. These were the islands I was missing. Submerged. Changed.
When the pandemic is over, we will all leave our houses and go to these favorite places. Will we find them changed, still beautiful, still alluring, but different? Is there anything that will fool us into thinking these thoughts? Our eyes have sharpened from watching out our windows all this time. Yet other senses are dulled from this “stay at home” directive many of us have followed.
Today in poetry class we talked about jazz music. Music is not concrete, made of rock or engraved in a wood sign at the park. Its fluent, moving, adaptable. We don’t “see” music as much as we hear it, feel it, integrate it into our beings. Our instructor Wayne, who I call the beatnik poet, is really into jazz music, especially when he can perform his poetry to the improvisation of good musicians.
He said, “sometimes I write a poem to be read at a jazz session, and I don’t read the words I’d written because different ones come from within.” His love of jazz and poetry is witnessed by his wife Alice, who is a keen observer of how the music affects Wayne’s emotions.
Jazz is improvisation. Variations on a theme. Jazz flows. Jazz music is a magical medication for Wayne. Jazz make Wayne come ALIVE!
In contrast I was a musician wanna be. And when I was diagnosed with Parkinson’s I found some good musicians who took me under their wings. They taught me their style of music to be played with my guitar: blue grass, old timey, traditional acoustic. “Tunes” instead of “songs.”
There is a set pattern that is played in many of these tunes which describes my personality. The pattern consists of chord progressions that make up the tune. These lines of music are referenced as ‘A, B” and sometimes there is a “C”. It may go like this: Play A” twice ,followed by the “B” part twice and then the last line of “A” again.
This music is one of the things that makes me feel alive. It takes me to a place of comfort: predictable patterns, knowing what is coming next. In this “knowing” comes a source of peace. I don’t have to be afraid. Although my playing is “rough” an still keep the rhythm going. And when I get “lost” someone notices and kindly says “we’re playing “B” and from this little guidance I find my way back. The first lead player nods his head toward the next person to play the lead. The person who kicked off the song stomps their foot or kicks it up to signal the end. Miraculously everyone stops at once. Yep, that describes me. Predictable, safe, reliable, knowing when I need to stop.
There is more to this freedom that I will carry from autumn to winter. On calm days we will put on our warm paddling clothes, load up the kayaks and hit the river. I hope we are out there in the early spring when the pelicans return. I can ride my trike as well, as I have all weather gear, or I can get on the trainer upstairs and pedal away. If I want to do something, I will find a way. The elements, the challenges, the mistakes made won’t stop me from living life to the fullest. If I let fear be in control, I will never be fully LIVE.
Autumn came too quickly. Winter will be upon us soon. I will keep living each day in anticipation of what will come tomorrow.
I used to bring electronics in bed to help me stay awake. I was afraid to sleep. Wild dreams, the kind where you live them over and again, possessed me for days after.
And now, when the electronics come to bed with me, I turn them on and instantly fall asleep. Falling asleep is good, but the “instantly” can cause issues. In my subconscious I am awake and interacting with people. One night I woke up for a ritual bathroom break and looked at FB messenger to see I had an interaction with a friend that ended with a bunch of unconnected words from me. Her comment was “having some trouble sleeping tonight?” Another morning at 4 am I heard my Facebook messenger audio call ringing. Oh my goodness, I had called someone. I looked at the name and flipped out. This someone would not be calling me, and would not appreciate a call from me at this ungodly hour, if at all.
Do you remember when email was a big deal? How about instant messaging?
In 1996 the young internet welcomed a new communication tool developed in Israel. ICQ, short for I seek you, showed great promise in allowing individual and personal text messaging to zig zag around the globe. Within 10 years the company was sold for nearly $500 million dollars. Big time discovery!
Come forward to now.
Social media Facebook, Myspace, tic toc, You Tube, Instagram, Snapchat, Twitter, have apparently taken over the need for face to face interaction.
A recently released Netflix docu-movie THE SOCIAL DILEMA suggests social media can be creepy and addictive. Some of us may already be aware of that. Others may be in shock over it. Devika Girish’s review “Unplug and Run” in The New York Times September 9th edition reveals to the unaware: the constant scrolling and push notifications engage the viewer in advertisements and propagandas that eventually take over and control behavior. Developers of several different social media platforms give interviews in the film. Most noted at first they thought they were doing great things. Yet later they admitted being lured by money. And now they are concerned about the breakdown in viewers’ mental health and the influences on democracy. One particular statement got to me” Russia didn’t hack Facebook. They just used the platform”. How easy was that?
The film highlights a family where no one interacts at the dinner table. The teenage girl worries about her online appearance and plays through many scenarios until what she finally posts bears little resemblance to her sweet face. The young brother is lured from his on screen activity into a demonstration in town where both he and his sister who follows him become innocent victims to police actions.
The developers come back near the end of the film to say “all is not lost”. Some comment they don’t allow their own children to use social media, that they keep use of electronics in their homes under strict control. There isn’t much else offered in the program in the way of suggestions to keep people out of danger, perceived or otherwise.
I thought about my own use of social media. It has been a connection for me with people around the world. Of the over 1000 Facebook followers, I suspect75% have been diagnosed with Parkinson’s disease. In this time of pandemic, we people with Parkinson’s are particularly lonely. Social isolation brings out symptoms as much as lack of exercise or undermedication. We can reach out to others on our phones, yes. But the connection via social media is often easier, reaches more people, gets us more feedback …. And I scroll and scroll.
What shall I do then?
I am not going to “Unplug and Run”. Personally, the seclusion would be hard on me.
Here is what I think will help, at least me, to continue using social media safely.
Assign a time and place to check my posts and stick to it. For example, 7-9 pm on the office computer. Or Sunday afternoons from 2-5.
Make pleasant posts that are accurate information.
Check out the facts before forwarding anything, better yet, don’t forward anything.
Don’t respond to inflammatory comments, scroll right past them.
Close out advertisements.
If purchasing on line, leave the social media site and purchase incognito.
This is a problem that deserves further conversation. What are your thoughts?
Its not uncommon for me to knock over a coffee cup. It happened just the other day as I reached for the TV controller to turn on the morning news. I had set my coffee down near me on the kitchen table. Still shaking the cobwebs out my head, I knocked it with my elbow. The cup tipped over and the coffee spread across the surface of the table with some dripping on the floor. I got a washcloth wet from the kitchen faucet and wiped up the spill. After rinsing the washcloth out in the sink, I refilled my coffee from the brewer and sat it down in the middle of the table, away from wandering elbows.
Its less common for me to drop a cup of coffee. Coffee mugs with their handles have something to hold on to. With Parkinsons there are times my grip just fails. I get tremors going hard and the cup flies out of my hand. When its dropped, or flung, the coffee inside the cup goes into motion. It travels through the air and lands all over the place. Today I dropped my coffee as I was reaching for the light switch while carrying too many items down the stairs. The cup hit hard and brown liquid flew everywhere. I grabbed a towel from the upstairs bathroom and got it wet. I wiped up coffee on the carpet, the baseboard, the wall, the bathroom tile floor, down the steps, under the waste basket and on the wall behind the secretariat. The coffee cup had hit the floor just perfectly to create this mess, like a perfect storm.
The first scenario suggests the idea that spilled coffee is not so bad. Sure, I had to clean it up, but it is somewhat contained. This could be in comparison with an illness such as the flu, or cold or maybe even shingles. Miserable yet definable and defiantly recoverable.
But dropping the coffee cup on the floor made a huge mess. It’s like my diagnosis with Parkinson disease, the chronic progressive neurological disease. First, I noticed a few symptoms, but as time passed, I became more familiar with the changes in my body. The dropped cup of Parkinsons had spilled out. Even after a thorough look at my interior and exterior, more symptoms were discovered as years passed.
I saw an article in a newsletter I had moved after the spilled coffee incident. It asked for subjects for clinical trials and research. I saw most of the research in the U.S. is not going towards a cure. There are many wonderful projects to slow the progression of the disease, to try out another medication for the symptoms, to help with balance in Parkinson patients. These are good and important studies. These studies will have something to do with improving my ability to keep my coffee in the cup, I am sure of it!
But where are the studies looking for the CURE?
Twelve years ago, I had first my visit with a movement disorder specialist. I was told “This is the best time to have Parkinsons. (WHAT? There is a good time?) “In your lifetime there will be a cure!”
Dear research people, there is longevity in my family. If nothing else happens to my body, I may live into my 90’s. That gives you plenty of time. Parkinsons has been identified as a disease for over 200 years. Get on the path to the cure it! And those of us suffering from this incurable disease, let’s do our part and get our legislators to introduce and pass bills directed towards funding more research for a cure.
In my spare time, I will conduct my own study of the typical coffee cup and develop a list of strategies to avoid spilling and dropping. That will leave the scientists more time to deal with the most important issue…
It’s four o’clock on a Tuesday afternoon in September. At least I know what month it is.
My calendar tells me I am in South Africa. I am there for three weeks. I arrived a few days early to acclimatize. On Sept.5 I gave a talk during a Parkinson’s Awareness Conference. Then we set out to walk on the Cape Camino. I am due home Sept. 28.
Obviously this didn’t happen. Covid 19 arrived in Pandemic style and flipped the world around.
As we had planned to be away, there was nothing on the calendar. A perfect time to travel stateside. Charlie had a dream trip of several sites in Colorado to visit. We kicked around the idea of when we should go..
Then we heard the news. My brother Tom had a pancreatic embolism and was critically ill in the hospital. It would good to check in on him. Although he was sick enough, and his body kept throwing more and more at him, he was determined to get better. For him, it was going to mean starting over, at the 0 mile marker and fighting every inch along the way.
Dooly was ready to roll. Food and clothes packed in, the odometer set back to 0, we were off to Loveland via stops in Idaho, Utah and then to Colorado. In Colorado we spent a bit of quality time at The Colorado National Monument, The Black Canyon of the Gunnison, Manatou Springs, The Garden of the Gods, Rocky Mountain National Park. Then it was to Loveland where my big brother Tom (2nd of my three brothers) and his wife Laurie built a home a few years back.
On that Tuesday in September, we drove to Denver to visit my friend Wayne, the beat nick poet. We topic hopped around a hundred subjects. It was new for him to have visitors in his home. We were the first non-family folks to visit since the pandemic began. I wonder if he has gotten to milepost one yet.
I had made a point of looking up people with Parkinsons in the places we visit. Prior to Wayne, I had seen the Poetry Girls and Cidney. ..AND some of the Davis Phinney staff! Each time I have made effort to reach out, even if it has been out of the way or an inconvenient time, I have been rewarded with gifts of immeasurable value. Words and smiles and socially distant hugs…and a rock from Wayne.
In all these parks Charlie and I visited there were steep cliffs, deep canyons. In the past I have been afraid of heights, or rather, afraid of falling. I walked to the edges and looked out AND DOWN!
Standing on the precipice I leaned to see just where the edge would take me The wind came up, I closed my eyes I heard a shout and to my surprise A hand reached out and pulled me back to safety
What’s a hand, what’s a dream Who can say what it means When everything that you know Can disappear Don’t look back, the spirits cry Just be glad to be alive Everything that you love is right here Everything that you love:
Life feels smaller than this stone Worn smooth inside my palm I keep it like a charm inside my pocket I keep thinking I’ll flame out Leave no one with a doubt That I was meant to fire like a rocket
What’s a stone, what’s a flame There’s always someone else to blame When everything that you know disappears Don’t look back the spirits cry Just be glad to be alive Everything that you need is right here Everything that you need:.
Mary Chapin Carpenter
Not time for my end, so I move along towards mile marker one, where the journey takes a turn and we take the new road.
The rock, Wayne gave me. I looked at it and I saw one face and a thousand faces. They called me … And I knew I had to go and find the million year old rock that had snuggled next to it, on the shore of the place when Wayne picked it up, from his place of pilgrimage.
Exit 0 is behind. Mile marker one is still ahead. It will be a long journey just to get to mile one.
As my husband Charlie left the trailhead on his four-day backpacking trip in the Eagle Cap Wilderness he turned and flashed a smile. He was in his element, and I wanted to be there too. You see, I had hiked hundreds of miles in these mountains with him. But the 34 miles of up and down with a 25 pound back pack was not going to happen for me, today, or maybe never again.
I was left with time to write, something I had not done much of lately. And this is what I thought about while he was gone.
Part of the adventure of going on a strenuous endeavor is getting there. There is more than just the travel to the location where a backpack trip or a mountain climb begins. Let me tell what I know about the things one needs to prepare for an adventure.
An adventure begins with a thought, a dream, or idea; usually placed in my mind by someone else or something I read. I commit myself to the trip, then I have many decisions. Who will I invite to go with me? What route will we take? What permits need to be obtained. Is my “adventure“ clothing and gear still in usable condition? What food must be planned and procured for our meals?
There is something I do before leaving home that might surprise you. I do a “check” on my emotional and spiritual status. Do I have the heart to do this? Am I open to what God may have in store for me.
Just before Charlie and I were married, we drove to a trailhead in the Blue Mountains, near my home. It was pouring rain and the road we were to turn on was very muddy. And what happened? His front wheel drive VW Rabbit got stuck. He asked me to take over the driving and I waded in ankle deep mud, holding on to the body of the car as I went, to take my place in the driver’s seat. Charlie got to the front of the car and grabbed under the front bumper for leverage. “Put it in reverse” he yelled. So I did. The front wheels spun, throwing mud ahead of the car, and of course all over Charlie. I heard him call out “STOP”. I took my foot off the gas pedal and looked up. Charlie had been replaced by a 5’10 180lb glob of mud! The huge glob took off his glasses and I could see his eyes, rimmed in white from the frames and lenses that had protected him from the slinging mud. “And I am supposed to marry this?” I said. We both started laughing. If I had to get stuck, Charlie was the best to get stuck with.
Ice Lake is three miles into the wilderness and then 6 miles up. From there you scramble alongside a small creek, coming to a level place where you choose right or left to the summit of the Matterhorn, the tallest peak in the Eagle Cap wilderness. We went left, which had us walking across of scree field to get to the trail to the top. Scree is tricky stuff; small rocks slide out from under your foot with each step. If you lose your footing, you will take a ride down the scree field avalanche. Right in the middle of the scree field crossing, I got stuck. I had looked down and thought about the quick trip I might have if I wasn’t careful. I was so scared I smelled the fear in my sweat. Charlie and our two dogs were at the end of the scree and ready to go for the summit. He recognized my inability to move and came back for me. Feeling the strength of his outreached hand gave me the courage to move quickly off the scree trail. We then saw the easy switchback trail that was to the right.
My first trip up Mt Adams, had me getting stuck. On the descent we had to jump a tiny crevasse, less than I foot wide. I froze, absolutely stuck in place. Patient Charlie waited for quite awhile before coming to the “rescue”. His rescue this time was not a subtle outreached hand. He took my pack, threw it down the snowy slope, jumped across the tiny opening in the glacier and glissaded down to my pack. I had no other choice than to go after him. I jumped feet first into the chute formed from his glissade and down I went sliding on my butt.
Don’t get stuck.
Most times I have been stuck, I have been able to get out of it.
Parkinson’s disease, though, I am stuck with. I can’t get out of it. After all it is a progressive neurological disorder for which there is no cure.
As I saw Charlie’s backpack turn the corner and disappear into the forest, I could have let my mind “get stuck” on the obvious; that I cannot walk these mountains anymore. That could bring my thoughts spiraling down to many other things I can no longer do because of Parkinson’s.
But you see, there is no good in that. I don’t see any benefit in getting stuck in the “I cant’s” of life. It is too draining. Instead of getting stuck there I make my own adventure. This time I choose to camp alongside the Wallowa River, watch the osprey dive
through the air to pick up fish, view deer nibbling on the leaves of a tree just outside my camper window, gaze at the clouds building up for their evening thunder storm, watch for shooting stars in the sky, have conversations with the gentle people camped around me.
Through my life I have prepared for this adventure. I get a thought in my mind to do something, maybe write a book or learn to sketch or travel to Japan. I choose wisely who I include in my adventure. I need people with like attitudes to share my journey. The Parkinson’s community provides me with that. I check my “gear”, the stuff I need to get along easier; my walking poles, good shoes, compression socks, even if they are ugly, and a basket of medication. Even now, I learn more about dealing with the Parkinson’s and I am glad to tell you there was no exam to gain my “permit’ to travel in the Parkinson’s wilderness, but I need to do continuing education. And most importantly I have “fed” myself well spiritually and emotionally to sustain me for this adventure.
Don’t get stuck. If you can’t do one thing, don’t stay there dwelling on it. Move on to something you can do.
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 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.