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.

You ask me how I slept...

It's 1 am. I am in a tent in someone's backyard in Hull Iowa and I am freezing. The breeze outside would be a pleasant refreshment most days but paired with Charlie's snoring is adding to my discomfort. Oh great. I hear raindrops tapping on the top of the tent. When you wake up in the night like this you usually need to visit the little room down the hall. Tonight that little room is up the hill and across the parking lot of a church or around a cluster of tents up a stairs into a house and downstairs into the basement.  As if on cue a response to  my cold predicament  is heard from a group of people some blocks away as they let out a huge laugh.  I wish this comic relief would relieve some other things. In a few short hours I will be donning my official "Pedaling for Parkinson's" kit ( cycling clothes). The big yellow tandem will carry us 69 miles to another host house. Agh now firecrackers.  There are 7 people with Parkinson's riding on our team of 65. Tonight we introduced ourselves at dinner. Later we attended a local support group meeting and each gave a little talk. There will be a few more opportunities to share our stories of the effect of exercise on the symptoms of PD.  For now?  Wrapping up in my blanket and trying to sleep .
Brrr where is my nice warm camper?

And sometimes it's just like this.... and I can walk!

I was dressed and ready to ride when the storm hit.  Lightning and thunder and pouring rain. These powers decided for me.  My riding today would be inside a support vehicle.  Charlie decided to ride his single bike. This would be wonderful for him on a good day, I just worried. He didn't have any rain gear, not that it would help in this monsoon.  Although the PfP group was on the road ahead of him, I knew there were about 15 thousand other cyclists he could follow. 

Our resident doctoral student in biochemical engineering was also on transport today.  She had bad road rash from a a serious wreck the same day of my mishap. As we rode along on the pickup she asked me if the cycling helped my Parkinsons.  I  explained to her that I sleep better, sometimes my handwriting is better.  At that point we came to a stop in the parking lot of a convenience store. I jumped out and scurried, somewhat jogging across the parking lot with no assistance from trekking poles.  "AND SOMETIMES ITS JUST LIKE THIS AND I CAN WALK!"  I called to her across the parking lot.

Yeppérs. A true benefit of biking.

Sometimes I can walk.

Learning to ride a tandem

Its been quite a comedy act getting on and off this big bike. Even funnier is having my trekking poles attached "just in case" I need them for a long walk. We pulled in front of the house last night and when I got off I saw that the trekking poles had wiggled out and lengthened themselves. No one would want to draft us with those pointy objects protruding from the tail end of this tandem. (I dig deep for humor)

Here is a typical tandem conversation between  captain C. and stoker S.
C. Going
S. Omg. If you don't hear me say ready my left foot is not on the pedal
C. Pedaling. Stoking. STOKING!
S. Oh, you mean you  want me to pedal faster
C. Up hill, changing gears. Wow that snake has dried out since yesterday. There's a car coming in front of us.
S. Hey, I don't care about oncoming cars or dead dries up snakes. I just report what's behind us.
C. Gliding
S.  EEEEEK   It wouls be good to warn me of  the glide before not while we are gliding
 C. Slowing. Glide. Stopping. When we come home I will always stop us at this gutter.
S. Like I can see that gutter. I will look for the third building from the end.
S. Nice ride dear
C. Yeah, that was fun, we are getting so good at communication .

thrown a curve

It was too be and not to be. Plans were to go on 30 mile tandem ride in this beautiful September weather . DId not happen. Since Wednesday and the series of injections I have had very little pain in my lower back. But I have had increased symptoms of Parkinson's including the dreaded "Inner tremors" , increased tremors in both hands, some mental confusion and difficulty relating a clear message.. and a huge chunk of cement I must be carrying around because my feet do not want to move. Due to decreased pain and increased Parkinson's symptoms my body said EXERCISE! A long walk and a couple of bike rides as well as some house work left me feeling like a lead balloon. This morning I fell asleep at the breakfast table and fell off my chair. That was a first. I received a call that my dad had taken a small fall. This must have been a family thing because he fell off his chair too! I went to check him. He was ok. Shortly thereafter I found myself joining in with the Blue Mountain Fiddlers entertaining at SUN TERRACE. There is just something about music that lifts you up. I could strum but not talk very well, but it was all good. Picked up Luke and we went to get my dad to bring him to the house for dinner. Luke is so very kind and gentle with my dad. And dad loves to tease him. It took me a bit longer than unusual but I got dinner on the table. It was a joy to watch my dad savor a home cooked meal. He was very appreciative and much more like himself.
To get to my point...Life is good, isn't i?" Because of my uncooperative body I was directed to enjoy other things...Musicians sharing polkas and waltzes, a 15 year old's kindness to his almost 94 year old grandpa, a laugh with my dad about both falling off our chairs, watching my dad enjoying my recipe that I was able to get together on my own. Please be open to the joy that comes with the "other things" that come your way when your plans get changed. This is for you PwP whose days are dictated by your body more than your mind, heart and soul

Getting Stared...When Pigs Learn to Fly

I fell into one of those deep deep  summertime afternoon sleeps. Cousins Pat and Monte have a great sleeping couch! Drifting up into occasional consciousness I caught a movement outside the window.
Between the trees I saw bicyclists wearing the black, white and orange cycling kits of the Pedaling for Parkinson's team. Shaking this vision out of my eyes, I fell back into the comfort of the couch and within seconds was into the deep sleep. When I woke again, it was dark. I peered out to see the twinkling headlights of dozens of  bicycles coming down the blacktop road outside the rural Iowa farmhouse. I rubbed my eyes and looked again. The twinkling headlights became fireflies dancing in the tree leaves near the road. Two days after the completion of the ride across Iowa, RAGBRAI is still on my mind.

How do I relate the experience of this past week?  This RAGBRAI!  This is so popular amongst Iowans and Midwesterners that thousands of cyclists turn out each year to participate.  I am from the Pacific Northwest  My roots rest in Iowa cornfields, but I was born in the county of wheat and wine, Walla Walla. I now reside in Oregon..  There, corn has  recently become a prominent crop, grown in irrigated circles. RAGBRAI  training  rides took us past Oregon corn fields, pea harvesters, watermelon fields and hay laying in thick rows, waiting for the perfect moment to be bailed.  I road alone. I rode with Anne or Nancy. Finally Charlie was free to ride. Charlie and  I rode our single bikes together  and then the big yellow tandem became good company. Good saddle time. But not enough for endurance riding 7 long days of  RAGBRAI.

We were to meet the team in Hull, Iowa on Saturday July 19. Not wanting to miss a moment of the action we pulled into Hull Friday night...late, late Friday night. I had the address of Jason  written down, but there were no numbers to be seen on the darkened houses. We parked "Gertrude" and Charlie and I walked  from house to house with flashlights beaming on lights, doors and curbs, looking for numbers. Bingo! Stacks of tables and chairs, and cases of water and pop revealed our destination. The late  night insistent doorbell ringing brought a tall sleepy Jason out on the porch. He directed us to the church parking lot behind the house. "Park anywhere there. See you in the morning".

Smashed  insects were affixed to my bike with super bug juice. It had ridden in the place of honor, outside front bike on Gertrude's big bosom.  I scrubbed the white Bianchi, which Charlie nicknamed "beyond me", with...you guessed it, WINDEX. Numerous random and not so random people wandered across the expanse of the lot to check me out. I met Loren (yes the proper spelling), the church pastor whose parking lot we camped in. Jason came over to tell us breakfast awaited  in his house. The chair of Hull's RAGBRAI committee and president of the Hull Chamber of Commerce interviewed me and took my picture. Doug, Nan's husband greeted me. Mike, my Facebook friend showed up. There were Pedaling for Parkinsons   riders of all ages. What struck me the most about each and every one was they were not only cycling buffs but also buff cyclists.  I was not!!  We were instructed to get our "kits" in the garage. Boxes of riding clothes piled across from the paper goods, pop and water.

I felt like a flying pig!

We saw this truck at a gas station.

Trying to act casual I slunk into the extra cycling kit piles looking for a size larger than I ordered.  Oh no, two sizes larger!  Nan had suggested I lose weight, alot of weight before the ride.  I ordered smaller sizes expecting to have a smaller bod.  WRONG!  I gained weight during the training period.

DAY ONE DAWNED! That night was much too short.  I recall my tenting experience in a seperate post/ We packed the clean Bianchi next to Charlie's bike in the support trailer. 

Straddling the big yellow tandem, Charlie and I reviewed the communication commands from our tandem training : pedal up, ready, bike on, going.  A few blocks of quiet tree lined streets and we turned left to join the mass of humanity cycling into the sunrise.  RAGBRAI.  THIS IS RAGRBAI!!!
My heart skips a few beats in excitement. My Parkinson's induced apathy is gone. I am laughing and grinning from ear to ear. I actually feel something.!! Here we go. 69 miles until we sleep.

We pulled into the first town's confused mess and had to walk the tandem. For me that's like being drug through a throng of people by a big yellow praying mantis. I think that's what I will call this yellow Co-Motion tandem.  We stopped at the pig pink painted photo spot. .
And then got out of there as soon as possible. It was much safer and comfortable to be on the bike.  Tonight's lodging was to be at a private home near. Lake Okajobi. This vacation spot's name was soooo mispronounced by us. Dozens of times we were corrected... almost as many times as our Midwestern teammates mispronounced our home state by saying Ore a gone.  After 60 some miles Charlie and I were enjoying the speed of the downhill. The heavy tandem and our extra weighty bodies followed the laws of physics and gravity propelled us at 25, 35+ mph...only because my wise husband kept us in check and control.   Unbeknownst to us we sailed right past the street to the night's lodging and into town.  Charlie pulled up our yellow beast in front of a young local family who was enjoying the never ending stream of cyclists.  The kids were thrilled with our strange bike as parents gave directions. We got turned around, headed back up hill against the speeding downhillers. The faster riders hogged the entire side of the road we needed to travel on, just as we had a few moments earlier ...BIKE UP. BIKE UP  we both shouted.  Earlier that day we had  learned the warning call to clear the path as a cyclist pedaled facing the flow, like a salmon swimming upstream.  We were ever so glad to get across the lanes of  bike traffic onto the right road. And extra glad  to find that home. That night we ground up giant mosquitoes and pattied them for skeeter burgers.  For dessert we had biting flies.. Actually they had us.  A shower. A massage, a beverage and it was to bed in a tent of buzzing creatures. The praying mantis was sleeping soundly in the trailer.  We needed her tonight. Eventually I slept.  Tomorrow I ride "Beyond Me", my single road bike.