The Miracle of the Arm that Moves (Miracle #2 in the miracle series)

 June 14
When the ear hears a piece of music that moves something within the heart or touches deeply in the soul  dopamine production kicks in.  This is especially interesting to music lovers with Parkinson's Disease.

Lets have a little in neurology as it relates to Parkinson's.

Normally, there are brain cells (neurons) in the human brain that produce dopamine. These neurons concentrate in a particular area of the brain, called the substantia nigra. Dopamine is a chemical that relays messages between the substantia nigra and other parts of the brain to control movements of the human body. Dopamine helps humans to have smooth, coordinated muscle movements. When approximately 60 to 80% of the dopamine-producing cells are damaged, and do not produce enough dopamine, the motor symptoms of Parkinson's disease appear. This process of impairment of brain cells is called neurodegeneration. 

So, by the time I was diagnosed with Parkisons 7 years ago, I had already lost most of the dopamine producing cells.  I had also lost an ability to play guitar.

About the time I was diagnosed and retired, educators were retiring from the Hermiston School District due to a wonderful perk for insurance.  I attended a retirement party and ran into fellow teacher Ron and Anne who were bluegrass musicians. I just knew they would help me get going so I invited them to dinner and tagged on "bring your instruments." They started me on the Bluegrass journey that night and jams and festivals followed. I l oved that fast paced driving music.  It affected me a drug, like dopamine.

I had played on and off for  years and even for  church services.  But its different now. Sometimes my right arm does not move,  My wrist feels locked and my fingers cannot hold a pick.  Fingerpicking is a struggle.  One day I tried to explain to Ron what it felt like to have to "WILL" your fingers  and wrist to move through a bucket of hardening cement to pick and strum. I dont t hink you can understand it unless you have experienced it.

When my dad died, I packed away the guitars and  didnt get them out.  I don't know why.  He hated blugrass so maybe that's what I played when he was alive.  He didn't come to hear me play, but he could complain. Maybe I needed to grieve myself out of what he hated and into something I loved.

Important influences and experiences in my musical life include my brother John.  On my sixteenth birthday he gave me what had been his first acoustic guitar.  I played it until it was no longer playable. And when he visits he  has a car full of instruments to try.  We sit up for hours playing beatles and eagles and whatever and he makes me sing and it evens sounds good...at least to the two of us.

 Bob Swobaoda worked with me for awhile.  He was truly a music teacher and band instructor. I learned some theory. But I just wanted to play.

 Mike Benton was the music director at Camp, and I was the activty director.  We had the opportunity to play together at alot of camps..and I will always remember when Mike left me  in charge of the sing-a-long, a reach in skills for me, and a 14 year old Jeremy Berka stood up by my side to give me support and lead the singing.

Margaret was the toughest teacher.  Of course as a college professor she wanted her students to learn it right. I practiced  each bar of each song until it was perfect.  And if the arm and finger were pulling through that bucket of cement, she made me practice harder.  Margaret loves guitars and found a nice Taylor for me when I was ready for my first big girl instrument. I am thankful for that.

Mike  Kellison gave Luke lesssons and then I took over from Luke.  Nicholas was kind, caring and fun and always so poilte and helpful...one of the finest guitar players I have met. Jon Wambeke was great with  kids but this 57 year old woman  had a frightneing time at the monthly performances.

Fred helped me some with the blues, as did Mike Benton in more recent times. All of these fine people influenced my skill development.

A few weeks ago we found out that help was needed over the summer for music at church.  I asked Pat if I could play alongside her a week or two prior to our turn.  The first week was so much fun.  I played loud. smooth, clear.  Pat said "I dont remeber you ever playing like that Carol"

The next week it was back to old cement arm. I got over to the Sacajewea Blue grass Festival and into a jam.  I sat through that great jam frustrated,  holding on to my guitar, not being able to even strum.  

Saturday I had to run home to play at Mass.  Cement arm made it through.  I came back to the jam one campsite over from ours.  I announced the Miracle of the Missing Guitar picks and then said "The 2nd miracle tonight is...' and I sat down and played.  And with a little help from Ron and Jack  the strings of  my guitar were soon smoking, keeping perfect rhythm for the leads.

Its like that with Parkinsons.  Sometimes people don't think you have the disease because the symptoms are not as apparent.  There are many non-motor symptoms that most people do not even know about.   The disease is always there, hidden or not, neurodegenerative, eating away at the few remaing dopamine producing cells. 

I cherish the miracle days.  Those magic moments when I am laying down the rhythm and joking with the guys.  I can't  wait until another "Miracle of the Arm that Moves"

The Miracle of the Missing Guitar Picks (Miracle one in a series+

Sacajawea State Park marks the confluence of the Columbia and Snake Rivers. The last time I was there I was much younger.  And I don't remember how much younger so that must have been a long time ago.  I was in my folks 25 foot Bayliner.  My dad was practicing docking...in the wind...the wind that comes up about 2 pm at Sacajawea State Park.  I connected the dots.  The winds slammed the Bayliner into the dock way back in 19XX.  And the wind wanted to tear the canopy off our camper last weekend as we attended the Sacajawea Bluegrass Festival.   We paid to get wrists band and listen to music but we mostly showed the wristbands as we pedaled in and out of the Park to enjoy the great bike path.

Along about 3pm on Saturday we both jumped out of our chairs realizing almost simultaneously that we had promised Sara we would be back at 3:45 to rehearse music for the 5pm Mass.  Scrambling for guitar, music, capo, picks, and straps we secured everything else from blowing away with the wind that we knew was coming (it was a bit tardy).  Charlie knocked over my guitar picks and picked them up and put them somewhere.  Its very nice of people to put things away for you, but then you never know where they went.  We raced home in the red car, grabbed fast food for Luke, took quick showers, found clean clothes and made it to the church almost on time.  I started to get my guitar out then realized my guitar picks were not in the bag.We searched every nook and cranny my car uses to hide stuff.  No luck.   I dumped every thing out of my purse. Nothing,  Charlie went home to look around the house and check pockets for even one little guitar pick.  No guitar picks. We were all pretty unnerved at this point. THEN The priest came up to remind us about the "DO NOT PLAY" list.  I was just glad he didn't tell us all the songs we wanted to play were on that list because that's all I brought and we would then be in deep doodoo. The keyboard player didn't show up. It was going to be just me and I didn't have any guitar picks.  Sara placed her hand on my right arm and prayed and then  I played the opening song without a guitar pick.  I turned the page, listened to the prayer that lead into the next song and reached into my purse for a kleenex.  There it was,! My little bag full of favorite picks. I was flabbergasted because I was sure the purses was empty.  I do not know how the picks landed in my purse.  It had to be divine intervention.

This was the first miracle of the night.

June 7 Tandem riding report

Tandem riding report for June 7.  Today's 50 mile ride was preempted by Mother Nature who is having significant hot flashes. The asphalt patches on the road have become bubbling tar pits waiting to swallow the yellow mosquito eater. If this should happen we will have to wait for it to emerge in 10,000 years  when paleontologists of that era will identify it as dinosaur bones. We can't have that.  While we wait for mother nature to come into a reasonable state, the captain is spending his time sawing logs. The admiral (stoker ) is stringing guitars and trying to  appreciate the temp set on the air conditioner while considering putting on a sweatshirt.  I will stop now and save you from further description of our non- ride today.

June 9 tandem report

Tandem Report June 9: Yesterday we rode the hells  (oops I mean the hills) of Hermiston. It was a hellish 103 degrees when we started.  We think of Hermiston as being flat, but we are really down in a hole, not a bad hole but a hole non the less.  You have to climb out of Hermiston proper in any direction. . .I named yesterday's ride the 7 Hells (hills) of Hermiston' I think we rode 5 and a couple of these twice.  If you know of others hills let me know.  I don't want to hear of any of your personal hells. Today we are talking hills.

sunshine lane
"the neighborhoods" North
Geer Road
4th Street
Theater Lane to 8th and up 8th
Highland to Highland Extension
First street Extension Station Road
"the neighborhoods" south
Nelson Lane
Punkin Center

The yellow mosquito eater got a new cassette.  You say "cassettes have gone out like 8 tracks and CDs" and I say we are talking bikes.  The teeth on the gears were just worn and the chain was slipping making riding the hills even more miserable.  I think my teeth are getting worn and my gears are slipping a bit too, so the Mosquito Eater and the Stoker have commonalities. How old is this bike in people years  anyway?  Hmm  Steve at Scotts Cycle and Sports went rummaging around the back room and came up with the last existing cassette for this bike.  Wow, I wonder if Dr Hiller at OHSU can rummage around the neurology department and come up with a new brain for me.  I want a fresh one, not one of those cadaver brains.  Right out of the box please!

Riding bikes has helped me so much.  For one thing I have developed this silly way of sharing my life with all of you.  Sister  Mary Ellen, I hope you are smiling from heaven because writing was so hard for me in High School. 

AND THEN THERE WAS TODAY AT THE GYM!!  Ii started walking, then jogging, then running lines, grape vine, side to side, backwards, steps.  Today I am thanking Dr Jay Alberts for his research.  Bicycling has helped this Person with Parkinsons.  Praise God for the knowledge and skills these doctors and researchers  are given.  Keep moving friends  And be ever grateful that you can

Acknowledgements

Bikers (as in motorcyclists) acknowledge each other in passing.  You see the subtle wave between the oncoming biker and the one you are following in your car.  There is a  connection between those who are out on the road, feeling that engine roar or purr (depending on the bike) beneath them.

Cyclist (as in bicyclists) also share a camaraderie.  Pedaling my way between Stanfield and Hermiston on 395 I was stunned by the sudden presence very very close to me.  "On your left" I heard the deep voice say. I knew exactly what to expect and that he expected me to hold my line so he could safely pass. The someone passing me was a tall lanky cyclist. He looked back and said "hope you are having a great ride" as he distanced me.  Coming down the hill by the water tower (yes the one responsible for many letters to the editor. You know... the trade mark watermelon replaced by "Watch Hermiston Grow") I saw another riding pedaling up.  My speed was picking up and I hardly ever remove my hands from the handle bars.  The rider looked up and acknowledged me with a nod and a wave.  I manged to  return these friendly gestures.  There is an understanding between riders. And we acknowledge that with these greetings

When Anne and I first started riding together, I was very slow.  I am slow now so you can imagine what it must have been like for Anne to ride with me then  We planned to meet at the Mormon church (in contrast to my meet up spot with Nancy, the Last Chance Tavern).  I watched for Anne and when I spotted her, I  spotted another rider with her.  Anne must have acknowledged the rider coming in as she was headed out.  The rider turned  around to join her.  The very fit 60 something gentleman saw two women who looked like they were "riders" and decided to take another spin. We can really look the part wearing our bike shorts and jerseys, don't ya know!  We  slowly pedaled out to Space Age and gentleman rider (GR) left us in his dust. We stopped to use the bathroom and hydrate.  After our defueling and fueling break, GR  pulled up.  "Where have you ladies been?" Um, well we had gotten there  in our own time, that was for sure.  We crossed the  highway and  rode out Echo Meadows . GR started commenting on Anne's bike and giving riding advice.  His manner was not too appealing to Anne (she lets her thoughts be known) and  before too long he was at my shoulder offering cycling tips.  Not wanting to lose my balance, I ever so slightly turned my head to him and said "Look, its enough for me to stay upright on these skinny tires.  I don't need your help right now!!". I don't make a habit of being rude to other cyclists, or really to anyone. It must have become obvious that neither Anne nor I were interested in improving our riding under GR's tutelage that fine day. Another rider turned onto the road heading our direction.  GR acknowledged him, and was acknowledged back.  "See you girls, I am going to ride back to town".  Off he went.  Harmless.  GR gave us alot to talk about in rides to come.

About 10 years ago I offered to help a young deacon with some accent reduction so he might be better understood by the congregation. Last fall he returned to our church as a priest. After the long passage of  time and the thousands of people he must have met in numerous churches he served in, he remembered my name! WOW I was impressed.  I saw him again on ASH Wednesday, the first day of Lent,  You know...the reason behind Mardi Gras?  I went to a midday service to receive the ashes, the symbol reminding us to repent and be saved...that we came from the earth and shall return there.  I ended up in line to receive the ashes from him.  He very seriously dispensed the ashes, reciting the brief prayer. And then it came, the acknowledgement, the  wink, a quick smile and twinkling eyes.  We shared a memory of a pleasant time long ago working together.

A wink, a wave, a nod, a smile,  catching an eye across the room... in that split second of acknowledgement we understand each other. In this world on misunderstanding its a good place to be.

Needle in the....BACK!

We both woke up at 3 am.  Charlie, who had gone to bed at 8:30 was awake, totally awake.  And cheery mind you. He dared to sing the "Good Morning Song". Some of my readers will remember the "Good Morning Song " from our 2012 walk on the Camino de Santiago in Spain. We were often tired and grumpy in the morning. WHY? Charlie managed to sleep through his own snoring. The rest of the occupants of our lodging, family and pilgrims, did not. We did not appreciate the "Good Morning Song", despite his good intentions.  I, who had gone to bed at 10 pm last night, quite early for me, still do not appreciate the "Good Morning Song". I manged to lay back down and snooze a little longer. Steel cut oats and fruit waited for me in the kitchen. By 5 am we were on the road to... C and D's in Boardman!! where Charlie hoped to find fresh donuts. They don't open until 6. So he visited with contractors and pipe cutters and electricians who were also waiting at C and D to grab a bite before heading off to build a new co-gen plant. He came back with two day old donuts that would have been wonderful if fresh and warm. I heard all about the lives of the go-gen contractors: where they live, the work hours, favorite places to eat...you can learn a lot  from talking to contractors when you have a mutual interest in donuts, I guess.

back to today's events...
People with Parkinson's experience a lot of pain.  Doctors are just starting to recognize the pain as part of the disease process, instead of a separate ailment. I have had some type of back issue for quite some time.  Sitting in tiny chairs at pint sized tables for much of my professional career as a speech pathologist was not helpful.  A horse buck-off incident down at the Oxbow did its damage too. Since my  diagnosis with PD the back has gotten worse.  There are times when I cannot propel myself and need to use trekking poles, rails, walls, doorways to help me move.  I cannot pick up my big guitar case, carry a laundry basket or walk holding a baby.  This is not who I am.  I am strong.  I am invincible ! I am a mover and a shaker and I have quite a bit of moving and shaking left to do. There are places to go and people to meet.  I can't be in pain all the time!

still haven't gotten back to today yet, have I?

Taking the bull by the horns, I sprung into action. (who wouldn't if they were holding a bulls horns) Bicycling was fun, free and freeing.  I previously had no pain while cycling.  I rode over 1200 miles last year.  Then it started to hurt while I was riding. No good. I need to train for the BIG EVENT next July. Action was needed!
I visited the podiatrist, the physical therapist, a chiropractor or two, a massage therapist a physiatrist, a pain management doctor and her two  pain doctor residents. I had some injections. I tried to swim regularly.  I continued tai chi through the pain. Every morning I did my stretches and my LSVT BIG exercises. I slept on the floor, on the couch, in a recliner, in bed with wedges and bolsters trying to alleviate the discomfort. Then my dad's health turned.  My energy was spent caring for him. Not myself.  The pain worsened. One day as I was taking Dad to an appointment I saw a sign at the hospital.  Columbia Pain Mangement.  Right here in Hermiston.  I called them. They are from Hood River and come here weekly.  That sounded good to me.  Talk about a thorough evaluation...complete with a drug screen and questioning about my use of marijuana (I don't) I had confidence that they were the ones to assist  me.

A call early this week was what I wanted to hear.  "Can you be in Hood River 8am Friday morning. Your insurance  has improved some injections".
My lower back is full of arthritis. A disc has slipped forward causing a pinching of nerves that innervate my legs.  I feel like lava is pouring down my calves and my feet tingle and get  hot.  The glute muscles, hamstrings and calves are like knots.  My toes are starting to curl up.  My right leg is quite atrophied. Some due to Parkinson's? Most likely, but can I get out of pain enough to exercise harder? To complete more adventures.?  That is the question I have asked many of these experts I have visited.
These guys think I can.

Finally, the appointment today...

The injections were guided by a fluoroscope.  The physician washed my lower back down and injected lidocaine to deaden the area.  He told me exactly what he was doing each step of the way,  A dye was inserted to show him the pathway to the nerves.  It was followed by a steroid to decrease any inflammation around that nerve being pinched.  The process was repeated on the left side. An assistant brought over warm wet towels for my back and wow did that feel good.  The doc left, I got to look at the pictures of the procedure and then was put in a wheel chair and told not to try to stand.  When I finally did stand up I knew why they told me not to. With  an RN in front of me and Charlie behind we made it out to the car.  I dosed in the car until The Dalles where I was treated to a cafe au lait and a pastry and a visit to the music store next door. Unfortunately I could not climb stairs by Dr's orders so no drooling over guitars in the "special back room".
So how am I now?  My back hurts from the injections.  I have ice on it. But I can actually walk without grabbing the couch, the wall, a chair.

We made it home by noon.  Along the way we saw two herds of Dall sheep, and sadly one that had been hit by a car, now dead alongside the freeway. I laid low this afternoon.  Doc says it may be awhile before I feel the full effect of the steroid. I will be a good patient. Last time I was injected I went for a 10 mile bike ride. Not now... I can't wait for the morning when I rise  before
cheery Mr. "Good Morning to You"and  yell "No Pain! No Pain!" and wake his from his restful slumber.        

I imagine there will be other procedures and medication changes as I progress through this horrible disease.  I will keep on moving tho.  Its been 7 years now since my diagnosis and add a couple more years to that for symptoms I tried to hide from myself.  Still doing good. I am hopeful, forever, hope filled.

new paths to pedal

Home sweet home...we are very thankful to my sister Beth and her family for inviting us to share their family Christmas celebration. Our home in Hermiston felt like a strange and lonely place with my dad's recent passing and Loren being away. We enjoyed excellent weather in Atascadero with good food and great wine..kayaking, cycling and wildlife viewing. Leaving Atascadero was hard but we drove up the coast Highway 1 enjoying the blue blue sky, the green green hills and the blue-green sea.. Next...The Meet-up with Robert, Yvette and Brandon, Cece and Tony,
for a late lunch on the Santa Cruz Pier. This turned into a Camino reunion walk to see monarch butterflies. The San Ramon Clupnys took us home and consoled our grieving as we sat up late at night and the next day in our pajamas until noon, drinking coffee and telling stories. Not ones to stay still long, we bicycled through the lovely vineyards near Livermore, saw movies, played hilarious games, ate Yvette's fabulous cooking ...laughed and cried together until our hearts were no longer heavy.
Now we are home...home sweet home...it is too quiet...we are too still...there is a big hole in time and space that once was filled with a dad who needed us. We did our jobs and now that page is turned and we start a new chapter. Time to renew and regroup. A new year is on its way.