Tandem Riding(or not) log June 28

Tandem Riding Report June 28.   Today's ride was canceled as the captain took off in a red Mini Cooper and the Stoker took a long nap... Make that two long naps.  Mother Nature has gone totally out of control with her hot flashes.When it gets to be over 100 degrees the blacktop is something like 160 degrees. When I was a little kid we loved the hot weather.  It was fun to find bubbles in the tar and pop them with a stick or a nail.   Mother Nature even let out a few grumbles (thunder) and blown off some steam with some pretty strong winds today. I got up early this morning for a ride on my roadie but when I felt the air temp it was easy to go back to sleep.  Took care of the dogs and horses and got cleaned up for church.  Backed the car out of the garage and out of the corner of my eye I saw something that was not supposed to be there. A horse! My big mare that I had just finished doctoring.  I got the horse back in and thought I was late for church but Fr Luis had trouble with the sound system so I was good.  The reading today concentrated on healing. The woman with the 12 year  hemorrhage had dared to touch Jesus' cloak.  She was poor, a woman and considered unclean due to her illness.  Yet her belief healed her. What faith she had! Jesus felt the power go out of him and turned around to say "Who touched me?"  In the crowd around him he was touched and jostled and bumped alot.  But the power of healing went out to only the one person, the one who believed. Her  admission to Jesus that she had touched his cloak took great courage as this bold action could have brought her death.  Fr Luis reminded us that even with our physical illnesses the greatest thing we need healing from is fear.  Think about it, aren't most of our actions based in fear? Most of are negative emotions are buried in fear.  Why do we get angry, carry anger around with us and not let it go.  Anger is based in fear because we are afraid if someone touches us, or thinks differently than us or influences us we are vulnerable to harm.

Many former Catholics  joke about the Catholic guilt.  I remember having that guilt.  But it wasn't because I was Catholic.  It came from fear. Fear if I didn't behave a certain way the nun was going to whack me with a ruler. That fear lead to many physical symptoms that I help onto in to  adult life.   Fear of telling what I really believed.  Fear that it wasn't OK to accept what I could bear to accept at the time, and let the rest be...Fear of the mystery that was a vengeful GOD and is loving GOD.

After being diagnosed I let it go, the anger, the guilt, the fear.  There were a few rough moments in the process, but  "I" began to emerge.

Fr Luis said "When you walk out of this church today you will be healed of the illness of fear" Jesus feels you reach and touch His cloak.   Because you believe you are healed.


 Deliver us, Lord, from every evil, and grant us peace in our day. In your mercy keep us free from sin and protect us from all anxiety as we wait in joyful hope for the coming of our Savior, Jesus Christ.
Amen

Tandem Riding Report June 14.

Tandem Riding Report June 14. Yellow Mosquito Eater was needed to eliminate mosquitoes at Sacajawea Park where we camped out at the Bluegrass Festival held there. We spent most of the time riding the tandem back and forth between Sacajawea and Hanford logging 100 miles and adding 14 more on my road bike. Great news arrived on Friday when we learned the new Co motion Periscope Torpedo was in the paint shop getting its green applied. Charlie promptly named it GrePedo (green torpedo) and Nan Little suggested it be called Rappedoe. I think we could call it Repeato for my return to RAGBRAI and ThreePeto  if I should return a third time to ride the famous bicycle tour across Iowa. Note on spelling so we don't get any "pee" comments from Michael Fahning  about this tandem bike.We will see what takes. TWO WEEKS seems so long! But the paint has to dry before I can sit on it!!! Short rides this week and then next weekend a big one planned of 65 miles through the rolling wheat fields of eastern Oregon.

The A Roar A Boring Not for Alice..er...The Roaring Boring Alice...notquite right...Aurora Bores Alice AHG The Northern Lights

JThe night time sky is so fascinating.  I have watched my brother set the timer on his camera to follow the night sky as the earth rotates into morning.  At 9000 feet on Mount Adams I sat outside the tent all night, too amazed at the  twinkling stars and planets  to sleep.  In the Eagle Cap Wilderness I laid on my sleeping bag marveled by the August meteor showers.  In the depths of the Snake River Canyon a gentle slope of cool grass brought relief after a sweltering day on the river and we watched the moving pinpoints of airplanes and satellites and shooting stars as we shared the stories of our lives

Of all the nights I have gazed into the heavens, there is one that stands far above the rest.

                                                             July 8,1991

So many events lead us to this date.  They have  been chronicled in many places.  Let it suffice to say this day changed the lives of Carol and Charlie Clupny forever. 

The phone rang, calling us to another Eastern Oregon town about 2 hours away.  We rushed to gather the needed items and piled them into our car.  This was all new to us, we weren't exactly sure  what we should do.  So we drove.  And as we drove we chose a name for our baby  boy                          Born

                                                         July 5,1991

                                             LOREN MICHAEL CLUPNY

My mom shared a promise with her Cousin just before her death in AUGUST 1990.  I never heard my mom speak like this but this is what she said:  "When I get to heaven I am going to kick some butt and get Carol and Charlie a kid".  

Charlie was in the driver's seat whisking us home to a place that was not prepared for a baby.  We had nothing ..  I started to get anxious thinking "Loren is going to have to sleep in a shoe box (Charlies size 12)  or we will have to pull out a drawer and tuck  him in with socks and t-shirts." (swaddling clothes, manger)  Panic was pushing its way up my throat.  I was truly terrified. But before I could ask "Charlie can we take him back" I saw something out the window.

In the distance I saw strange lights.  Unusual flickering, flaming, weaving, churning lights.  Colors so brilliant and then so fading that it made me wonder if I was imagining them.. I thought it could have been a forest fire.  Yet that did not make sense. The behavior of the lights was unlike any flame I had seen.

Charlie  carefully steered the car through a rest area parking lot full of people who had also witnessed the phenomena from the freeway.

                                                       aurora borealis

The aurora can be seen best magnetic midnight. In northern latitudes, the effect is known as the aurora borealis (or the northern lights), named after the Roman goddess of dawn, Aurora, and the Greek name for the north wind, Boreas, by Galileo in 1619. 

Dawn Wind.  Its rare that the wind blows at dawn.  And when it does it brings us ALIVE..It AWAKENs us in a way that keeps us from falling back to sleep.  It makes the dawn fresh and clean and vivid. Loren Michael Clupny you are a rare and unique man...You sing life, you dance life, and you love more and deeper than life.,  more than we can understand.

That night, July 8 1991 the aurora borealis surounded us in our little car with our three day old baby and escorted us home.
And in the dawn that little baby awakened what was dead inside and we became family.

Loren Michael Clupny    you are Aurora dawn Borealis wind,   Happy 24th anniversary of that night.

The Fathers Day Ride

Father's Day is for BBQs, Hawaiian shirts, straw hats, sandals and an Alaskan Amber. The kids buy their dads ties, handkerchiefs or wallets..  As they get older these gifts turn into baseball caps, BBQ sets, aprons and if the kids are rich, a Traeger.

We attended the Saturday vigil because on Fathers Day we are getting up early for a long ride. Such convenient options for worship in the Catholic Church. We heard from Fr Luis about different kinds of dads. Even when placed into one of Father's suggested categories the kids may not grow up as expected.  I have known kids with less than great Christian dad models who grew into more than great Christian adults.  And there are those who provided a good model but the kids choose other routes.  I know Charlie was thinking about this as we started our atypical Father's Day.  And he was thinking about his dad, too.

We rode out Highland to Feedville to Despain Gulch. We got a hold of Whitney this time.  We stood at the Westerlund Road eating peanut butter and jelly sandwiches when we saw the Porter's white pick up coming down the hill, throwing billows of dust to announce our friend's arrival.  Whitney jumped out of the truck and gave us a big Hello!  Just a few years ago, the  Pendleton Round-up Princess Whitney did a magnificent run-in on a beautiful quarter horse. The track at Round -up Stadium was perfectly groomed and watered so that no dust would occlude the vision of the lovely princess in her knee high boots and leather regalia jumping the railing on her horse.  Today's entrance was much different, but met with the same excitement as if we were watching her at the roundup.  We are glad to know Whitney as a friend and colleague and are proud of the all around awesome parent and professional she has become   For many years we  worked  beside her in the holding pen and in more recent times we have admired her from afar with our binoculars from the highest row in the south grandstands. Today she brought her dust and we brought our sweat and chain grease and we made the best time of a few minutes together.

66 miles can get pretty boring from the stokers view . Charlie has a strong broad back that I can't see around. So I was back to entertaining myself by making lists of things I spot  in the ditch.  In the clothing category there were three gloves, unmatched, a  couple of raggedy shirts and one pair of men's whitey tidy unders (gross). I could have started building a car from tires and wheels, a muffler. two hubcaps and a license plate identified as we rode by. The oil for the vehicle could be gleaned from drips left in oil bottles and cans discarded on the roadside.  An oil filter and a beat up air filter were in the ditch but miles apart. If I needed it, a strategically located roll of TP came into view.  This weeks "unusual items thrown out of cars" champions were a yellow rubber duck and an aluminum pan with what looked like the dinner contents still cooking In the dead animal category a large badger was in the oncoming lane and three birds met their demise in the windshields of speeding motorists. An identified carcass was stripped clean by roaming carnivores I am sure.  As for living creatures Charlie's saw the shadow of vultures circling  (a portent of doom?) From my backseat view I watched a big deer bounding through the ripening wheat parallel to us as if challenging a race.  I didn't really see a live person and this may be a figment of my imagination...But there must be an individual who drives this road a lot. I hope he/she is still living.. Perhaps trying to get his courage up for who knows what, he/she drinks pint bottles of whisky. There are dozens of empty pint whiskey bottles on about a two mile stretch of this road

If my friends got together and walked this route to pick garbage I think we would collect a few dump trucks full. After observing 66  miles of litter I wanted to shout out, "Come on people, let's keep the ditches clean so this stoker can write about flowers and mountains and wildlife instead of roadside waste".  Oh yeah, waste, the human kind.  I haven't seen any of THAT kind, but I do see plenty of pee in Gatorade bottles.  "Come on people, we are in the middle of nowhere.  You can stop your car and pee outside here!  There's even toilet paper at mile marker 19."

Charlie has been waiting for me to turn left onto highway 18 ( in my story). The wind hit him head on and we both pedaled with all we had to get up the steep inclines. Then we hunkered down and held on against the gusts, gliding to the bottom of the rolly and up the next polley.  The Cold Springs Grange came into view, a much needed rest stop.  I anticipated sitting on the steps to eat my lunch. Alas, it's someone's home.  We took refuge under a far tree and ate baked potatoes with taco sauce and boiled eggs.   Father and son riders from Pendleton stopped for a chat, also taking a Father's Day ride.  They were the only other cyclists we saw this day.  Next we pedaled Cold Springs Road, past Soreys arena (Whitney's sister) and stopped at Bracher's oasis where we napped on the lawn a refreshed our water supply.

If you readers are growing weary of this story imagine how we felt living it,  Seven or eight miles  miles from the Bracher's we passed the Hamen's, cruised the long steep grade down to highway 730 and pedaled into Hat Rock .  It was 2:57 pm and the store, reportedly open until three was locked up tight.  Charlie, who is ever so good at getting things to happen, found the cook and procured two bottles of much needed Gatorade.  A quick spin to the boat launch bathrooms and back we went to highway 730. Impending storm clouds and sore butts compelled the stoker to order the most direct route home. Diagonal road.  Today the semi truck drivers slowed and gave us  alot of room.. Four wheel drive diesel pickups and rvs pulling boats were less than mindful about the safety margin needed.

Home at last, I took a quick shower, downed my PD meds

Don't Beat your Bike with a Rock.

Don't Beat your Bike with a Rock...

the desired effects may not be obtained

Just a short distance from my house my bike decided to tip over. The poor Bianchi hurt itself into an un-ridable condition.  I, on the other hand, had a nice conversation with the lady in the car my bike was intending to avoid when it fell over. For the first time in my life I beat my bike with a rock trying  to bend the bent up parts back to where they should have been so I could finish the ride home. No such luck.  I should have known that when you take a big rock to your bike it does not make matters any better.  It did make me feel a little better,tho. I cried the obligatory tear of humility. I let one or two slip when I have to walk my bike home because it has been bad.  The bike is repairable and I was not in need of repair (for once)  The husband showed up to pick me up about 100 feet from the house.  I loved his comment "Ya want me to try to fix it so you can finish your ride?" Then he looks it over. "I think it needs to go to the shop" He says.  I didn't tell him that was probably more  due

to my beating it with a big rock than the actual crash.

Tomorrow I am riding in the car!

PWP (person with parkinsons) Goes Hiking

PWP Goes Hiking

PWP (person with parkinsons) Goes Hiking

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I decided we should go on a hike. I am not sure why I chose a hike when I have not even been out walking much. It just seemed the thing to do on such a pretty spring day.And we were on the road to where there might be interesting hiking trails.

Driving to Ellensburg on I-82 to deliver a piece of furniture to niece Kimi we found ourselves distracted by thoughts of the Yakima River Canyon. We turned off at Selah and followed the highway up the canyon. Drift boats and fly fisherfolk swarmed the river and its banks. We pulled into the Umtanum recreational area. I reached for  my trekking poles and lumbered like a lazy bear to the suspension foot bridge crossing the Yakima River and leading to the Umtanum creek trail. It was apparent, immediately, that this was going to be more than a spring stroll...

It was going to be a stupendously challenging, monumentally overwhelming PD obstacle course.   Why would I be so challenged with this gentle climb along a meandering creek.  After all I had been preparing for hiking. My PT (physical therapist) Kimber encouraged  me to pick up my feet when I walk,  The LSVT "BIG" program she administered taught me to overemphasize movements because what I thought were huge steps were really small to  tiny steps. My "PT" (personal trainer) Cindee has been guiding me in building agility   (those crazy frontwards, sideways, backwards, in and out and out and in steps on the ladder) and strength (yes ma'am I can lift weights while walking 22 mph on the treadmill at elevation level 15 with a 50 lb. back pack oh just you wait and see). One would think that I can do anything, 'cuz after all I think I CAN DO ANYTHING.  My body image is of a 105 lb  twenty something softball player, horsewoman, backpacking athlete. Until I look in the  mirror, that is.  My realistic body is well, uh,  me...what I am now...oh you know, I don't need to describe my current appearance.  Just let it suffice to say I look like me.

Back on topic here
I view things differently now as a PWP,  After a few face plants and a broken ankle I cautiously scan the area around me for anything that may impede my travel, or cause me to fall.. My ears are in tune for bicycles coming from behind  if  I am walking and cars from any direction if I am biking. I have even learned some avoidance strategies. Crowds of people cause me anxiety as I may be accidently knocked off balance and create a dominoe effect by knocking other people off balance until we are all trying to help each other up..oh yeah, back on topic...

The first obstacle I encountered  was the  suspension bridge across the Yakima River.  It was fine, well maybe almost fine as my weight did not sway the bridge too much.

 I was balancing ok, gazing down at the rushing waters  passing underneath when VALLOOMP I was thrown off balance. (balance is a challenge for PWP) Charlie had stepped on the bridge and from about 10 paces behind me was making the darn bridge move so that between the two of us there was the most peculiar sway.  My equilibrium could not handle this.  Out came the trekking poles, my legs spread out in my drunken sailor stance and I got a grip on my terror.   "OK Carol",  I said to myself.  "You are NOT going to fall into the river, there are guard rails. Get moving!" Maintaining my balanced stance with my legs spread three feet apart I got across safely.  I am sure I was quite the sight to the fisherfolks tying flies on the other end of the bridge.

From the suspension bridge we walked down a steep embankment, under the railroad tracks and up to a place where there were a choice of trails.  The trail to the left went along the tracks, the trail to the right went up. I should say UP! because it went practically straight up.  The next obstacle...my husband...I hate these lectures that squeak out of his generally kind mouth.  "I hope that's not the trail" I said.  Here it comes.  " Now Carol, what are you going to do in France if that's what the trail looks like and its the only way to go".  Oh those "what if's!  Luckily UP! was not the way to go  and we followed the trail left.

Up the gradual incline of the winding  path.  I was stiff from riding in the truck. My back was killing me.  It was work to pick my feet up over the rocks.  They felt like boulders and then there was POISON OAK.  It was here, and it was there and I had to turn my body this way and that to get around it. These were movements I didn't know I could do anymore.   An unknowing spectator would have wondered if I was doing the "twist" or maybe being attacked by killer bees that had migrated to the Yakima River Valley from South America.  I managed not to brush against a leaf! Charlie either. Danger of infestation  behind us, we continued on.

I asked the all knowing husband the time.  He looked at his phone and replied "1:59".. I did not want to argue that it was 1:37 when we left the K-Mart in Yakima  (where it took 30 minutes for him to purchase 2 bottles of water) And that had to be an hour ago.  PWP can tell the time without a clock. Almost to the minute this girl knows when she needs meds.  It  had to be three o"clock.  We walked on a few more steps and I came across a nice sitting rock.  "I think I will sit here and take my meds, could you check the time again"  "2:59"  Hmm how time flies when you are having fun.  We walked on and I started getting into the swing of things when we came upon the Carol height native grasses. The grasses reached like tentacles wrapping around my trekking poles, jerking  them out of my grip mid step and throwing me off balance.  Self talk again: Ok Carol you can walk without  trekking poles a few feet. Get over it and move on.

I forgot to mention there were some delightful things about this trek. Blue sky above (with vultures circling)  beaver dams, a huge beaver lodge (I almost fell into the creek trying to take pictures of), the sound of song birds (probably carrying bird flu) ...then...

There it was, the next obstacle.  A branch crossed the trail about chest high.  Can't go over it, can't go around it, must go under it.  Another thing this PWP can no longer do is the limbo.  Bending knees as much as I can (cuz this girls back don' bend so much anymore) I made it under and to the other side.
Husband did the same thing.  He didn't look any better getting under that tree than I did!

We took a few wrong turns (no yellow Camino arrows here) and backtracked to find the correct trail up the narrowing canyon.  The final obstacle appeared before us.  The creek needed to be crossed.  I have crossed many creeks in my life (and fallen in a few while doing so).  Today was not a day I wanted to slip off that half submerged log and land on the rocks I was supposed to be jumping three feet distance to reach. My sense of timing played in perfectly.  I checked my phone.  "Oh, its time to turn back if we are going to make Elllensburg by 5." Saved!

I usually beat butt on the downhill. I even had a chance to practice the "Australian Pole Dance" (Yvette) the  downhill use of trekking poles. I sent  Charlie  across the suspension bridge first so I could take some photos (wink wink). No huge sway this time. The hike was ending nicely.

I celebrated this first hike of the year with a delish dinner and a dessert of brownie sundae with extra ice cream.  No obstacles were noted in the consumption of food this night.

We all face obstacles in our paths.  Yours are no different than mine although we may call them by different names. Keep an eye out and an ear open to what's  happening in your home and in your workplace; with your family and with your co-workers.  We cannot avoid obstacles (or guide others around them) without recognizing them first. No one should stumble or fall. Step high, be kind and choose the right path.

An apple, Some Peanut Butter and a Bottle of Water

An Apple, Some Peanut Butter and a Bottle of Water .

Tears.  Months  go by without tears finding their way down my cheeks. Then they come.  Tears sting my eyes as I try to fight them back.  I dam them up until they overwhelm my efforts and spill. Wiping them away with the back of my hand I say "Damn, what are you crying about?"  Its this stupid disease.  And even worse than that its what I have done to my back and how the pain is compounded by this stupid disease. And even worse than that I am crying about it.  I am letting those tears, the ones I cry inside, slip out into the world.  The disease is winning.  It now can be seen by the world.  By my tears, by my noticeable limp, by this weakness on the entire right side of my body, by this tremor that no longer hides itself, by the fact I am crying so much lately, it is winning.

Cindee (yes Cindee my personal  trainer) starts the treadmill and says "Where are you walking today?" " I am on the Tour du Mont Blanc".  Tears well up and creep out.  I keep walking the treadmill trails and then I start talking.  But I can't say the words. I can't say "I am scared shitless about this walk around Mont Blanc". So instead I talk about how I have found a route I know I can do and neither Charlie or I will know any different because its all new. I suck up those tears and attempt to put myself in the place of optimism. The place where all my dreams come true

Cindee keeps me going at the 8 elevation for awhile.  She notices how its become easier for  me over time.  I notice I am walking at only 2 mph.  She notices how quickly my heart rate returns to normal. I want to say what  I am thinking "Its going to take me all day to go 5 frickin' miles." She puts the weights back on the rack "Remember when that was hard for you? Look how much stronger you are".  My thoughts spiral down and down and I want to say "Right. We both know better.  I have these grandiose ideas.  There is no way I am going to complete my trifecta. Not this year, Not ever. Who do I think I am.  I have Parkinsons Disease".

"I have been afraid Cindee.  For some reason I am afraid to  go out by myself."  "Hey you rode your bike here the other day". "That I did, but I am liking that less and less.  I am losing confidence. I need to get walking and there is no one to walk with."

"What are you going to do when you leave here Carol.  Walk or ride?" "Probably walk. I need to walk". "Let me know when you get to the top of the Butte".  Ok, there's the accountability. I am not one that doesn't "show up".  I am not  one who does not follow through.  And I would be quite ashamed if I did not do what I said I  was going to do.  She had me!

Back home from the gym I get my toe socks on, then a pair of  light wool hiking socks.  My hiking pants.. what size are these anyway, they are fitting pretty loose.  OMG these are  men's pants? I had to buy men's sized pants?    A tech shirt, my favorite guide shirt, my famous pink camino (camino yes not flamingo) baseball cap, Boots tied and I am ready for my pack.  To the pack I add a pair of scissors and some leuko tape just in case a hot spot  or heaven forbid a blister needs protection.  Oh, I should bring a snack and some water.

What do I want for a snack?  I pack the perfect things. An apple. I can't eat an apple without being glad about it. We just happened to have some lovely crisp apples so I grabbed one.  What goes good with apples? Working in Joann Pringle's preschool class, (where I developed a love for little kids with disabilities and learned the REAL words to "Bringing home a Baby Bumble Bee")  I developed a taste for her favorite snack, apple and peanut butter  I put a little peanut butter on a WHITE tortilla (because as you remember not even Nutella makes a whole wheat tortilla taste good!) A bottle of water fit nicely in its place on the side of my pack, right where it belongs, where I am used to it. Familiar, even comfortable, the pack goes on. Trekking poles in hand I lumber out the door and off to the Butte. I am not walking even two miles an hour today.  But I am walking.

As I walk I think how horrified my son Luke would be if he  drove by  with friends and one said "Hey isn't that your mom?" We are not used to seeing a middle aged woman marching down the sidewalk with trekking poles, hiking boots and a well worn backpack here in Hermiston. That it would embarrass him makes me smile. Then I imagine a police officer pulling up and questioning me "Ma'am we have had reports of a  possibly intoxicated homeless female weaving across the street.  What's in your backpack,? "No officer I'm not drunk. Its JUST Parkinson's Disease! I am carrying an apple, some peanut butter and some water."   I hope to get to say this sometime because this scenario brings a chuckle.
Then, while climbing the Butte, I see the Cross.  I think "Keep your eye on the Cross.  No one ever stumbles when their eye is on the Cross"  Just then I trip and fall to my knees.  Oh my that leads to a need for introspection!.
Well, when one falls down one must get up but I am having a hard time because now I am laughing hard.  I have many memories of falling and laughing so hard I could not get  up.

My day has become brighter.  Forgetting to eat my snack, I get to the Cross on the Butte, down and back home without any of the above situations actually occurring, except the falling of course.
I plunk myself in the recliner, take off my boots, finally eat my snack and take a nap.

Do you ever, like me, make life so complicated that it makes you cry.  You spiral downwards in frustration, worry, fear?

 Then its time to take the challenge.  Pack up a snack, take a walk and look to the Cross.

Smile. Laugh when you fall. Get up and when you are home, take a little nap. You'll feel better. Its that simple. I promise.

All is well, with my soul, all is well.

Not even Nemo

Not even Nemo could keep me inside the MRI.  I was snug in the narrow MRI tube.  Under my knees was a pillow.  A wedge kept my lower back and pelvis in a comfortable position. Soft blocks held my shoulders in the tray. My head was enclosed in a cage that reminded me of a Lacrosse helmet.  A handsome young man, Sam, was at the controls. "Ramp up the air, Sam".  Full blast was not enough!  I watched the beginning of "Finding Nemo" through a mirror strategically arranged to catch the projection of the movie from Sam's laptop. The beginning of Nemo is quite sad. Tears started slipping from the corners of my eyes. "Breath  Carol Breathe" I chanted to myself.  "Soon you and Dorie will be swimming with the turtles".  Then, a cramp in my back.  Tears came harder.  I realized I was not going to make it through 70 minutes of this brain scan.   #2  scan completed its pinging and banging sounds. Thank God it was quiet for a second.  "Sam ?" "Yeah Carol. Ready for the next scan?"  I choked on my words.  I didn't have the courage to stay in and didn't have the courage to tell Sam I wanted out. "Carol, what's going on? Carol?" "Get me out Sam!". Sam must have run from the control room because he was right there when the tray slid me out.  

Some months ago I was contacted by a research assistant in the Gait and Balance lab at Oregon  Health Sciences University.  He described a study that fit me perfectly, except for one part.......15 scans of my brain in an enclosed MRI with  no PD meds and no ingestion of a calming agent of any kind.  The study was looking for correlations between balance and cognitive skills.  I had already completed three hours of cognitive testing without much break before I was lead over to the OHSU hospital for the MRI. I was tired , a little weepy over poor Nemo's Dad losing his wife and kids. Except for little left uneaten Nemo, Dad Clownfish was alone in the world. I felt alone...in the busy hospital, with caring researchers and my husband of 33 years nearby...I felt alone.

We PWP can feel alone sometimes.  We can feel unwanted because we are different, or uncertain because of the physical and mental challenges we face. Left behind because we can't keep up.   Nemo followed the "skippers" away from the "school" was drawn by the big blue sea. For awhile he was lost and alone/ There were lots of scary things "out there".  Things that wanted to eat him up, or misguide him, or sweep him away.  Although getting caught up in the big net can be such a bummer, Nemoo and PWP survive by following Dorie's advice to "Just keep swimming swimming swimming."

They let me come back the next day. This time we traveled to Beaverton. The research team had identified some value in the data I provided.  So the wiring began at 9:15 am.  I walked fast, walked slow, turned right, turned left, spun around, walked a tight rope,  stood on foam cushions with and without eyes open. These activities were simple enough until I had to double task; balance and walking and spinning while counting backwards from 297 by threes or naming every other  letter of the alphabet.  After a  couple hours of this rodeo, I was whisked off to Dr Dan's office where more cognitive tests were administered.  One test I had to name as many words beginning with "f" as I could.  Made me wonder what some people say cuz I was in such a mood by then that the "f" word almost snuck out. Hungry, tired and craving meds we got on MAX and snoozed to the Lloyd center for food and fellowship with an old friend.

I saw my friend Brandi today.  She asked if I received compensation for my time.  I told her I was given lunch money. She asked me how I felt about being a research subject.  I feel, as I have from the very day I was diagnosed.  I have to find some good in this miserable disease.  If my experiences as a research subject will one day make another PWP's life easier, than by golly its worth any bit of inconvenience its caused me.

I think I will watch the rest of Nemo now.

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