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I cannot see directly ahead when I ride behind Charlie on the tandem bike. His broad back blocks the view. I certainly can see what is beside us.  The other day we took a long ride on the backroads and I kept a mental count of what we saw.

This is what I wrote when we got home.

Riding the tandem bike through the countryside of Umatilla County has been a feast for the eyes and nose, but not the taste buds. No, we would never stop to taste those strawberries that are so perfectly ripe at the side of the road. And we wouldn’t dare pluck the blueberries off those bushes, the miles and miles of blueberries growing out….well I am not going to tell you where. Melons, cantaloupe to be exact, we spotted just starting to form into the roundness that will serve as bowls for the fruit and some vanilla bean ice cream, a specialty at our house. We are not touching those until they are ripe, and only in the store. But those apricots falling off the tree into the road, we will pick up a couple next time we pass, pretending we are stopping only to gulp from our water bottles. I saw a plant, a mysterious plant I had never seen in this particular field. I asked Charlie as were climbing a two-mile hill and he huffed and then he “puffed” out…”HEMP”. If you want to find that field you need to get on your bike and ride where the riders ride. You’ll know it when you see it.
There was the usual corn, “knee-high by July”. Hay fields were mowed and the alfalfa waited patiently in rows to have the perfect moisture content to bale.
Nearly 30 miles of agricultural touring and we turned into the wind, which they harvest around here also, and headed home. The variety of crops was enlightening but did nothing to fill the emptiness in my stomach. We made it home for a 9 pm dinner of nothing grown along the backroads around Hermiston. Except, well, maybe, a strawberry that found its way into the pocket of Charlie’s cycling jersey. nummy.

Seating outside for lunch was  limited due to the rain showers.   Attendees at the WPC looked far and wide for places to perch themselves while devouring their bento box lunches.  I had managed a corner of a couch and was merrily munching away when my couch partner got up and moved. “Perfect”, I heard someone behind me say and a woman with dark hair and deep brown eyes sat down beside me. I recognized her from hearing her speak  and seeing her photo in publications from OHSU. I am sure we had been introduced before.

“Julie Carter,  I am Carol Clupny from Hermiston, Oregon.”

I recalled she was connected to Pendleton and that became the basis of our chat.  The differences in the two communities just about 30 miles apart is amazing.  Pendleton is populated by a lot of old families.  The city is hemmed in for development by the river valley and hills surrounding it.

Hermiston is a relatively new community, being developed during the time irrigation came to the desert and continuing its expansion through the building of McNary dam.  Hermiston is sprawled.  Trim neighborhoods are in “the bowl” and businesses line highway 395 north and south of town.

I told Julie how much her work was appreciated by the Parkinson Community and recalled that she had been recognized at the 2016 WPC.

And then our time together was interrupted by the next session starting and Julie was off to present.

Retired, and still working for the cause.   That would be Julie Carter ARN.

Yip…. one becomes very open and honest with fellow PWP!! We understand one another!!
~Rose Meynell Bishop, Johannesburg S.A.

When I meet a Person with Parkinson’s (PWP) there is an instant feeling of connection. Before long I have shared my diagnosis date, my outward symptoms, medications and how they are working and she has shared hers.
So it happened with my new friend Rose Meynell Bishop. I was reading posts on a Facebook page designed for women with Parkinson’s when I saw Rose’s post about walking on the Camino de Santiago. Immediately I messaged her and we jumped right into the deep end with our conversation.

Before I continue with Rose’s story, here’s a little introduction to Parkinson’s for those not familiar, and a review for the rest of us:
Outward symptoms noticeable to the PWoP (People without Parkinson’s) are mostly motor movement based. Tremors in the arms and legs, stiffness and rigidity, stooped posture, slow shuffling steps, very soft voice, flat “affect” to the face, strange jerking or movements of the body, balance issues and falling are just some of the issues faced.
Parkinson’s disease cannot be cured, but medications can help control symptoms. In some later cases, surgery may be advised. Here is the list of major medications:

• Dopamine precursor: Drug which can pass through to the brain and readily get converted to dopamine. Helps in managing Parkinson’s disease.Levadopa.

• Catechol-O-methyltransferase (COMT) inhibitors: Inhibits the action of catechol-O-methyl transferase an enzyme which is involved in degrading neurotransmitters. Entacapone, Tolcapone, Opicapone, Nitecapone

• Dopamine agonists: Activates dopamine receptors and helps in managing the disease. Bromocriptine, Pergolide, Pramipexole, Ropinerole

• MAO-B inhibitors: Increases the amount of dopamine in the basal ganglia by inhibiting the activity an enzyme that breaks down dopamine. Safinamide, Selegeline, Rasagiline

After my new friend and I have compared these notes the conversation goes deeper. We talk about the most personal of the symptoms, the non-motor issues which most people without Parkinson’s don’t see, don’t know about and have never experienced. These include disturbances is smell, sleep problems, depression, anxiety, psychosis, hallucinations, urinary incontinence, constipation, sexual concerns, fatigue, cognitive changes, weight loss, excessive sweating, melanoma, visual concerns. The list goes on.

My deep-water conversation with Rose went to her immediate concern of dealing with urinary urgency and constipation as she walked on the Camino. As if these two ailments are not difficult enough at home, dealing with them as one walks through the Spanish countryside is unimaginable. Bathrooms are not readily available. Smaller villages may not have farmacias where incontinence supplies are available, and then, there is always the language and culture barrier.
I am a problem solver. Of course, I am not going to solve Rose’s non-motor symptoms of Parkinson’s. Yet, I thought about what I would do if I was in her situation.
We chatted online in that 9-hour difference between Northern Spain and the west coast of the US, where I live. We talked about using google translate to communicate with the pharmacist. For me, alcohol, carbonated beverages and caffeine make my urinary issues more challenging. For Rose, those were the exact beverages that resulted in less urgent problems. Since it was very hot in Spain while Rose was out on the Camino, she had to have lots of fluids. I suggested she make those fluids count by drinking AquaArius, a European sports drink and having some salty snacks during the day.

Rose completed the Camino and by her report spent some time in the square where she cried about her accomplishment.
Its an accomplishment for anyone to complete even a segment of that walk. Add Parkinsons disease to that pilgrimage challenge, and the fact that she walked solo, and you have a journey to be proud of.
Buen Camino

I remember the first national speech pathology convention I attended. It was sponsored by the American Speech and Hearing Association. I was late arriving at the awards luncheon and found an open seat at a table near the front of the conference room. When I was settled and had a chance to look around I realized I was seated at the dignitary’s table. To my right was the past president of ASHA and next to her was the executive director of the Alexander Graham Bell Association. The current ASHA president was the next person and then there was Nancy McKinley and Carol Westby, two leaders in the field. I realized I had sat where I did not belong and quicky started to gather my things. “No no. Your place is right here,” the woman on the left patted the chair seat to convince me to sit back down. I don’t know who they thought I was, but for a little while, about 32 minutes before they had to get up and address the audience I was right there rubbing elbows with the champions of Speech Patholgy and Audiology.

Charlie and I traveled to Kyoto, Japan last week to attend the World Parkinson’s Congress. There are some well known characters in the Parkinsons Community. In addition to seeing them on YouTube, Facebook, Podcasts and blogs, they are frequently invited to speak at conferences.

[ ] This WPC in Kyoto had its fair share of big names from the Parkinsons community present. One person who caught my attention at the WPC in 2016 was Heather Kennedy. Heather has YOPD, young onset Parkinson’s disease. I met her in the Book Nook at the 2016 WPC in Portland and we had a short disussion about who knows what. But Heather intrigued me enough to watch for her name in the Parkinsons world. To say Heather is a performer is understating her abilities. Educating and advocating about Parkinson’s is her passion. Her intelligence and humor keeps audiences engaged. Throw in a little singing, (maybe Jolene) a bit of dance (videoed at a club or Parkinson’s event) a wink and a shrug and she communicates beyond the need for words.

My fit bit told me I had already put in 6700 steps and I also had met my goal of speaking with four new people that morning. I decided to take a break in a comfy chair. I was just dozing off to sleep when I felt someone near me and a sort of familiar voice saying ” hey, whats up. Are you doing ok?” It was one of those big name people with Parkinsons, it was Heather Kennedy. “I haven’t eaten yet and I have to talk in a little while.” “Lets go find something to eat then” I responded. We were the only ones in the Grill restaurant as our orders were taken. After a debate with the waitress as to if there was grain or dairy (now I knew she suffered with celiac disease) we were alone again. In the next 32 minutes while we waited for and then inhaled our lunches, we exchanged enough personal information that we could say we actually knew each other, well as much as you can know in that short of time. The rapid pace of the questions and answers reminded of the “Speed Dating” game that was so popular about 10 years ago.

My 32 minutes of personal time with Heather Kennedy came swiftly to an end as the clock struck 12 and she was off to her next commitment. I promised to bring her a copy of The Ribbon of Road Ahead so she could know me better, and I promised to remind her on a regular basis that her thoughts are very worthy of being preserved for eternity in a published format.

Time to write, Heather.

There she was, Keiko, walking towards us as we came out of the grocery store just off the food court at the Nagasaki train station. “Oh you, I wondered if you would come after you asked when we were leaving.” “I had to say a proper good bye.”

Charlie and I searched the tables at the back of the cathedral for something written in English so we could follow the Mass. Not that we didn’t know what was happening. Catholic means universal, so the Mass is basically the same wherever you attend. The readings and some prayers change throughout the seasons of the year.

We came across a box of headphones, and after just being at the Parkinsons congress where people were listening to simultaneous interpretation.,nthought thry would be helpful. As we discussed not seeing translation services in a church before, a woman approached and pointing to her ear said “for hearing”. Oh, we should have known that. Charlie asked her about making a donation and as they talked I found a seat near the front of the long narrow church…

I already wrote about Michelle,the woman who translated the Bishop’s homily. We visited with her a few minutes, used the restroom and started to leave the church grounds when we saw Keiko, the woman by the headsets running towards us shouting “Charlie, Carol, I find you!” I got that she remembered our names but why she was running to find us was a mystery. As she caught her breath from her uphill run, she explained how as she waited for her bus she looked at the card Charlie handed her and saw we were from Oregon. Keiko had lived a year in Eugene, attending the University of Oregon in the second language learner program. She so wanted to talk with us that she asked to accompany us around Nagasaki. Who would think of turning down a free local guide. After lunch in an Italian restaurant we walked to ground zero… where the bomb exploded. There is a statue there of a woman holding a burned child. Keiko and I stood side by side weeping at this sadness.”I am so sorry Keiko”. “War kills innocent people Carol.” She told me she often comes to this place.  She feels the breeze that comes through the tunnel of Japanese maple leaves covering the path. As an American I did not know what to say to my Japanese friend. We shared the space in quiet reflection of the horror. “My mother was coming back to Nagasaki to go to work. She arrived after the bomb. She did not suffer from the direct blast, but from radiation after.

Keoko told me about her nursing career. She was a nurse for an agency that researched the effects of the bomb on those who lived through it. Every two years these research subjects came to the clinic to be examined and to undergo various imaging procedures. Keiko had grown close to some of these people. There were getting to be less of them alive as the years went by.

I came around a corner in the museum to see Keiko looking at a picture of a person who had been burned by radiation. It was an ugly sight. Tears were rolling down Keiko’s cheeks. I invited her join me in the cafe for a cold drink. As she regained her composure I asked how many times she had been to this nuseum. “I dont know. I come here often, spending times in different places”. My heart hurt. “Its good that you come. They need to be remembered. We can never forget this horrific event ”

I looked out the window of the train to see Keiko standing there, her appearance more of a 19 year old girl than a 61 year old woman. When the train pulled out she ran alongside waving, like in the old movies.

Goodbye goodbye

We are now friends, this Japanese woman and this American from Oregon.

•

On the way to Nagisaki

If you could make someone’s wish come true, wouldn’t you do it? And what if, in your efforts to do it, it became your wish also? What would you say? What if this wish changed you from tourist to pilgim?

BakerDioceseYouthLeadershipCamp people: Do you have this memory from Camp White Branch: coming out of your afternoon workshops and seeing 26 crosses out in the meadow that had not been there that morning? And what especially moved you about these crosses? Was it that they had belongings of your fellow campers draped over them. Andy’s tshirt, Mike’s towel, a baseball cap, a scarf, a pair of flip flops. I remember this like yesterday. I remember my eyes stung with tears at this makeshift memorial to the Nagasaki Christians who were

martyred in 1597 by the Shogun. I didn’t know anything about the event until that day. It became real to me. These Catholics believed in life and even into death that Jesus Christ was their Lord.

When I think of all the special times we shared at BDYLC over the years this one comes to mind as very precious.

Who put those crosses out in the meadow? Charlie Clupny and Andy Colvin. Charlie and a teenaged Andy who, with the assistance of the camp host collected the wood and dug the holes and planted the crosses and nailed the cross members. Andy grew up to become a marine chaplain serving in the Pacific, and I believe was even stationed Nagasaki. And Charlie made it there. It is not me who had the wish to go to Nagasaki. I thought the travel time of five hours would have been beter spent sightseeing in Kyoto. But Charlie had this wish. It was the first thing that mind when he thought of KYOTO.

And when we started planning to attend the World Parkinsons Congress in after attending the one Portland three years ago I asked Charlie where else he wanted to visit. He replied Nagasaki. It didnt matter that Nagasaki was half of Japan away. What mattered was Charlie had a wish. And because I could help make it happen, it became my wish too.

Tonight we climbed a steep hill to a memorial to these martyrs. There we met a Japanese woman named Hisako who now lives in Seattle. She told us how the Christians were persecuted, and they went underground and hid a very vibrant Christian community for 200 years. We spent an hour with this Japanese woman and felt like best friends; friendship initiated because Charlie had a wish. We stepped away from tourist mode and became like this

 

I once asked a very honest friend “what do I look like?”  “What do you mean, what do you look like?”  was her response. “ I mean do I look like a woman with a disability?”  “Yes Carol, you look like a 50 something-year-old woman with Parkinson’s Disease.”

I feel as if I have aged more in the past ten years than the calendar or mirror should show. Having a scapegoat in Parkinson’s Disease doesn’t make me feel any better.  Let me tell you what has changed in this once trim athletic clear skinned girl. I gained 50 pounds. My blue eyes seem to be sinking back into my head and are often reddened as I seem to have developed allergies to just about anything I put on my face.   My once blonde hair is darkening and thinning.  My skin is riddled with age spots, middle-aged freckles, moles and those funny patches of discolored skin that came on with the entacapone and amantadine and just never went away.  I concentrate to take big steps and to stand tall as my body wants me to shuffle around with a slight bend in my neck and upper spine.

What do I look like?  A sixty-something-year-old woman with Parkinson’s Disease.

Last Sunday we rode our tandem up the Yakima River Canyon on a fundraiser for Crime-Stoppers.  At the halfway point we took a short break before heading down the canyon on the second half of the ride.  Chatting with other riders is always fun, and we were notable in our “brain” helmet covers and asked to pose for pictures.  One woman stayed close by as Charlie and I mounted Grepedo.  Just as we started to leave she took a step closer and said: “We are proud of you?”  At first, I thought proud of us, why?   Then it hit me. I saw myself as the stoker on a green tandem bike.  She saw me as the sixty-something woman with Parkinson’s Disease.

The reality is I have Parkinson’s.  I look like I have Parkinson’s, whether I want to or not.  I can only change a few of the things about me as the disease progresses. My attitude towards the disease is one thing I have control over.

My only option is to let my Parkinsons shine.  If  I can make even strangers proud, well heck, let me flaunt it!

 

How do I make my book grow?  One suggestion was “BLOG”.  But what if I don’t like to blog?  I mean, doesn’t it take time to research meaningful topics. And then  I would have to get people to read my blog.  Do I really have to advertise?  How about if I just write stuff and call it a blog?

Like the song below, I just need to find some fertile ground to plant the  seeds (readers)

And I need to gently rake and hoe, getting at those weeds and tossing aside those stones.

There will be some warmth (throw in some love and support from other bloggers)

Until I get rained upon with tons of readers.

A fellow blogger who also lives well with Parkinsons Disease recent posted with the title “Do I need a Wolf Pack?”  She wrote about when she first blogged after her diagnosis in 2012.  She thought she had a unique topic, but found that there were many people already blogging about Parkinson’s disease. In fact, there is a whole community of bloggers who are willing to help each other.

Her name is Laura Kennedy Gould and she is a Pacific Northwest Parkinson’s blogger, who received her diagnosis in 2012.  Her blog is called “The Magic Trick- Life with Parkinson’s”.  In addition to writing about her own experience with PD, she has dusted off her journalism skills to write about PD research and other scientific topics related to PD.  Click on the links for examples of her humorous and illuminating posts – and also to find out why it’s called “The Magic Trick”

Not only do these bloggers share a unique insight, but they also are creative in naming their blogs. Here are some of them:

The Magic Trick- Life with Parkinson’s

Twitchy Woman – My Adventures With Parkinson’s Disease

The Perky Parkie

I am sure I will like being in a “Wolf Pack”.  This  community of bloggers will certainly be a place I can find companionship.

 Garden Song

Inch by inch, row by row, I’m gonna make this garden grow
All it takes is a rake and a hoe and a piece of fertile ground
Inch by inch, row by row, someone bless these seeds I sow
Someone warm them from below ’til the rain comes tumbling down

Pullin’ weeds and pickin’ stones, we are made of dreams and bones
I feel the need to grow my own ’cause the time is close at hand
Grain for grain, sun and rain, I’ll find my way in nature’s chain
I tune my body and my brain to the music of the land

Inch by inch, row by row, I’m gonna make this garden grow
All it takes is a rake and a hoe and a piece of fertile ground
Inch by inch, row by row, someone bless these seeds I sow
Someone warm them from below ’til the rain comes tumbling down

So plant your rows straight and long, temper them with prayer and song
Mother earth can keep you strong if you give her love and care
Now an old crow watching hungrily from his perch in yonder tree
In my garden I’m as free as that feathered thief up there

Inch by inch, row by row, I’m gonna make this garden grow
All it takes is a rake and a hoe and a piece of fertile ground
Inch by inch, row by row, someone bless these seeds I sow
Someone warm them from below ’til the rain comes tumbling

Ah it was a lovely day to go on a long bike ride…oops that was yesterday.  We rode from home to the Space age Truck stop  (about 5 miles) and got some essentials like KIND bars and lemon drops.  A slight break with some stretching on the cool grass and we were off again to Stanfield Meadows road which is relatively flat.  We pedaled another 5 miles into Stanfield, enjoying the birds, new calves and a wind that came at us at a diagonal, so it wasn’t too bad.  In Stanfield we pulled into out favorite haunt the Broken Barrel where Charlie and I split a fantastic tequila lime burger and a small salad.  He had ginger beer and I had water.  Then it was out to the Loop road.  I don’t know what go into us two old folks but we pedaled like 14-15 mpg as we “looped” through the farmland.  At the intersection of  Loop Road and Despain its like 7 more miles until it turns into Edwards and then it 10 miles  home.  27 miles went by quickly. Running out of daylight, we headed home with the top speed of 25mph on Highland extension, which we happened to be going west and downhill today.

 

Today was so different.  It was hot with a hot hot wind.  Can you guess how hot it was?  We pedaled out the lane and onto 11^th street, heading north. Following Cooney to Sunshine we were in the granny gear eeking out a miserly 4 miles an hour up the Sunshine hill. We came down through what we call the neighborhoods, past the Kopacz nursery and over to Geer Road.  It was not very fun when the chain came off as Charlie was starting to get us going up.  We had to stop and start mid hill, which is not fun at all on one as steep as Geer.  Making it to the top (in granny gear) we road on Punkin Center to 8^th and detoured to 4^th and up the 4^th street grade.  Back to 8^th and around the neighbor hoods again and darn if we didn’t lose that chain again.  Me thinks some repairs are in order. We rested in the shade of a WalMart tree enjoying KIND bar and Lemon drops leftover from yesterday.  Then we headed east on Elm to Townsend past the Field of Dreams with a ball game or two distracting us when a kid on a skate board with earphones and loud music came across the road and just about hit us.  Both of us called out to him but he couldn’t hear us until Charlie braked and got around him.  We were almost as guilty as he was being distracted by the baseball players.

Up 10^th to Highland turning west we went to NW 11^th and turned for home where we arrived just in time for the 4^th quarter of the Blazers game.  I dripped sweat all over the easy chair as I didn’t want to take a minute to change. 17miles was it? Should count double for all those hills.

What I learned today has to do with over shifting, shifting too fast, ignoring the stress on the chain as it hauls two big people up the hills.  Not that I will be doing any shifting, but its good to know. I am also  getting my butt ready for longer distances.  Even though my bike bibs have wonderful padding, those “parts is parts”  need something better than the hoo-ha cream I used yesterday.  Today I used good ole Bag Balm and it worked great.  I also learned, of I guess I knew this, when it gets really quiet and you don’t hear the wind anymore, its pushing you!                                         44 mile weekend.