C minus 9 but who is counting Are you prepared to walk the camino?

Its so quiet in the house right now.  Luke and I stopped at Starbucks on the way to his first day as a junior in high school.  We parked the big pickup in the far parking lot and I watched him walk away, his University of Oregon backpack hanging squarely on  his broad shoulders and his head down, eyes lost in his phone, looking for the right music to keep calm. He was very nervous this morning.  About 4 inches taller and 30 pounds heavier than he walked out the high school doors last spring…he looks like a grown man, yet he is just  a big kid.  I said the usual momma prayers, keep him safe from all evil, help him focus and let  him be a strong and righteous young man…send him to good teachers who connect with him.  Let security and safety prevail over this school building….

Earlier, I got up and went to morning mass.   Luke was awake and getting dressed.  I said “Luke, I am going to Mass this morning to honor my mom.  She died 25 years ago today.”  He looked up at me and sincerely said “oh. I am sorry mom”.  Those who know Luke will realize what a breakthrough statement he just made. My heart is still crying.

The house will be quiet when I am gone to Spain.  Luke will go to school each day.  Charlie will start his day with morning Mass and then go about his community service work and the small jobs he does to make extra change. I wonder, do  houses get lonely? 

In this quiet I am thinking about the Camino.  9 days until Paris.  All the tickets are bought, reservations made up to Pamplona.  I have everything ready in my pack.  I could walk out the door right now.

What I am pondering now is another kind of preparation.  Beyond the physical planning, the purchasing of clothing, weighing the pack, scheduling, hiking, weightlifting, trying on different shoes…

Am I spiritually ready?  I am emotionally prepared?  Am I mentally toughened?  Do I have personal discipline to follow through?

Walking for hours on end…some of that time is spent talking and singing.  There is also alot of quiet time.  Time that is not filled with all the noise that fills your  head at home. You will think about alot of “things”.  Those things that need to be kept will be kept.  Those things that need to be left behind will be left.  They will be trodden into the Camino by thousands, maybe millions of footsteps, just as you walk now  on the sorrows, pains, tragedies left behind by the thousands, maybe millions of pilgrims who have walked before you.

I first walked the Camino Frances 4 years after my diagnosis with Parkinson’s Disease.  It was on the Meseta, on a very hot day, on our 25 wedding anniversary, that I yelled at God and let my anger loose for giving me this disease. And God yelled back.  “Look where you are!  Look what you are doing.”  And I left the anger there for other Pilgrims to trod so deeply into that soil that it will never return.  And God has allowed me to keep walking, and cycling and moving.

Such a range of emotions.
 I copied this from someones blog, and I am sorry I don’t remember who to give them credit.

Prepare for the unpreparable-for. You will cry and scream and shout and hate people, things and trees.  You will rail against the world, yourself, your shoes and your pack (but never your stick).  You’ll be jealous, petty, hungry, thirsty, furious, ecstatic, joyful, silly, sick, stupid, inane and perfect.  You’ll be intensely involved with the intricate workings and changes in your own body and you’ll be thrown up against a wide variety of people from all over the world.  You’ll essentially be given a crash course in what it means to be human. Enjoy the hell out of it.

You can’t be prepared for everything.  But you can be open.  Keep and leave.  Give, and be willing to receive.

Novena in honor of the Holy Feet of Jesus

Novena in Honor of the Holy Feet of Jesus

Day One – With Mary and Joseph we adore the Infant Feet of Jesus (Lk. 2: 8-19)

Beloved Jesus, your infant feet, cared for and adored by Mary and Joseph, were a visible sign of your innocence and purity. May we strive always to imitate your innocence and purity. As we adore your Holy Feet, may your merits win for us the requests we make to the Father in your name. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Two – The Holy Feet of Jesus bridge Heaven and Earth (Jn. 1: 14)

Beloved Jesus, your Holy Feet were the living bridge between Heaven and Earth. Each step you took sanctified and cleansed the world you came to save. May we be filled with unending gratitude for this amazing grace. We adore your Holy Feet as we make our requests with confidence in your saving love. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Three – The Holy Feet of Jesus carry the Good News to the poor (Mt. 11: 4-5)

Beloved Jesus, how your Holy Feet suffered as they trod the hot and dusty roads of the Holy Land to bring the Good News to the poor. May we imitate your untiring devotion in spreading the Gospel message. As we adore your Holy Feet, so battered for our sake, may you look with kindness upon our requests. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Four – Jairus falls at the Holy Feet of Jesus to make his request (Mk. 5: 22-43)

Beloved Jesus, you had mercy on Jairus who fell at your Holy Feet and made supplication to you for the life and health of his daughter. In your mercy you rewarded his faith and answered his prayer. May you look with mercy on us also as we fall at your Holy Feet to make our requests in faith and trust. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Five – Mary sits at the Holy Feet of Jesus listening to him (Lk. 10: 38-42)

Beloved Jesus, you told Martha that her sister Mary had chosen the “better part” in choosing to sit at your feet and listen to you. Like Mary, may we always choose the better part. As we sit at your Holy Feet to listen to you and worship you, may you look on our requests with love and compassion. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Six – A woman kisses the Holy Feet of Jesus (Lk. 7: 36-50)

Beloved Jesus, this woman bathed your Holy Feet with her tears and wiped them with her hair. She covered your feet with kisses and anointed them with costly oil. May we also show you great love in gratitude for all we have been given and forgiven. With confidence and trust in your great love for us, we humbly make our requests to you today. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Seven – The Holy Feet of Jesus are nailed to the cross (Mk. 15: 25)

Beloved Jesus, you allowed your Holy Feet to be nailed to the cross out of love for us. You allowed your precious blood to spill to the earth from the wounds made by the nails. Give us the courage we need to stand at the foot of the cross–with our Blessed Mother and St. John–and kiss your Holy Feet. May the precious blood shed from your Holy Feet win for us the requests we humbly make today. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Eight – The disciples embrace the Holy Feet of the risen Lord (Mt. 28: 1-10)

Beloved Jesus, you met the disciples on the road after you had risen from the dead. In love and joy they embraced your Holy Feet and paid you homage. May we also worship you as Lord and Savior, embracing your Holy Feet. In your infinite mercy, please take our requests to the Father whose glory you share. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Day Nine – God puts all things under the Holy Feet of Jesus (1 Co. 15: 25)

Beloved Jesus, your reign will last until you have placed all your enemies under your Holy Feet. May our prayers and sacrifices hasten the day of your coming in glory. Risen Lord, merciful King, look with favor on our requests and grant them according to your holy will. (Make requests here.)

Holy Feet of Jesus we kiss you and adore you. 

(Pray the Our Father ten times.)

Not even Nemo. Reposted from June

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, Nemo 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.

I put on my boots today updated Aug 23, 2015

I put on my boots today updated Aug 23, 2015

Reaching into my closet with my good arm while  the rest of my body was squeezed between the rocking chair and the closet door may not have been the greatest idea. I was stiff and hurting if not from the Parkinsons Disease which is progressing  through  my body, then the 30 minutes on the bicycle trainer at 80 rpm or higher.  I wanted my boots, my hiking boots. But I was getting myself stuck. I put them on once a few months ago then hid them away where I could not see them, under the  sweaters and blouses hung there in hopes I will be able to fit in them again.  The boots called to me, “Come wear me”. “Walk me over hills, through vineyards and on the hard pavement and cracked sidewalks of city streets.” The insides felt so familiar to my feet.  I needed to be reminded of that comfortable supportive feeling.  The smoothness of the custom orthotics took away the tingling in the bottoms of my feet.  So thats where they had been,those orthotics, hiding with my boots. These nice Keen boots that had protected my feet while  walking on the GR 65, the Chemin le Puy from Montcuq, France to Ronscevailes Spain in the spring of 2013.  I had very few blisters wearing these Keens.   Do they have another go round left in them?  Do I ?

It turns out that the old friends are too worn.  They helped my body get through all that mud on GR 65 in 2013 and the wonderful mud, as (facial mudd is supposed to do,) closed up the pores (in this case the breathability pores in the boot membranes). I need to move on to a new pair.  
Will the new blue made in USA Keens be the ones? Will they provide as good as  “understanding” as the old ones.  Will they reveal to me their heart and sole?  Will they say “Don’t tread on me” when someone with large feet gets too close. My boots need to commit to my feet.  


 Boots are such a personal thing…you can’t go out and buy them for another person.  The new blue Keens and I are dating.  If they dont work out in some training hikes they can be returned. 

My Update:The new blue Keens have a place in my life. Not sure when I will turn to them again.  Due to a number of reasons I now sweat like crazy.  My feet were coming out of those Keens  feeling like I just stepped out of a bucket of water.  So I revisited REI and found these HOKAs. They feel cushy and they allow my feet to breath so that the toe sock liners wick the moisture away to the next layer, my thin to medium weight hiking socks!   Hurray.  I am set!! WillHurray.  I am set!!

C minus 14 but who is counting…trying my stuff out.

When I was a little girl, coming home from shopping meant trying everything on again to show dad. Today was my  “try it on day”.  So, Dad what do you think?

It’s important to me to know what Dad thinks. Shortly before he passed away in December Dad reminded me. “Carol do what you want to do while you can.  Don’t wait and then have regrets”.  

I take those words to heart and put them into action. Glad for his blessing  I keep dreaming, planning, adventuring.  In this race against time I am a head in front of Mr Parkinsons.  Coming down the backstretch I hope to beat him by lengths.
Trying stuff out.  
Everything I take on the Camino has to be tried and true. So there has been need to replace some of my travel gear.  Shopping online is such fun!! Waiting for the goods is not.

The woman who delivers the mail has been bringing me lots of packages.  She makes me happy. I’ve excitedly met her at the door or in the driveway or I have even scrambled out to greet her at the road. 

    
I gleefully take the package and sing ” it’s Christmas again it’s Christmas again.”  She is a friendly person and smiles and laughs with me but probably wonders. Today I happened  to be out by the mailbox when she pulled in with the package from Amazon. Retuning  from my practice hike  I am wearing  new clothes, my full  pack, with trekking poles in hand and dripping sweat.  She doesn’t eask.  Do postal workers have a code of ethics?  Are they sworn to secrecy.? Did they take a vow  of a confidentiality?   Yesterday I missed her delivery of my daily package. Stuffed iin the mailbox was an REI envelope containing  bargains  from the outlet: A new Sahara shirt and a base layer top  Oh do I love new things.   Thank you postal worker .

A little about today’s walk
My clothes from my pack were spread all over. On the Camino I will need to be better about keeping things in their place.   The items were easily stuffed  back  inside and maybe ended up where they actually belong.  Socks and boots are no question  for me.  I am set there.  Yet I need to consider how long it takes to do any taping and get the toe socks on. No issues with my trekking poles.  I decided to try out a selfie stick.  though I  not sure I’m going to take it. It was kind of fun to figure it out. I filled a big water bottle and stuck it in the proper pocket and didn’t even make me off balance ( which tells me something  else is off balance in my pack.)  

Off I went across the street, down the sidewalk, past the hospital and up the Butte.  The Butte is the only hill around here.  Inside ithe basalt dome is the city’s water tank.  It’s more if asthetic  now that ithey took the ugly reservoir off the top and buried it there in the basalt. The Butte is covered with trails. some with  pretty steep pitches and others are just gentle grades. Today I walked over as fast as I could and took several of the grades up and down especially “down” where I realized I haven’t been doing enough down because going down my knees started a litany of complaints. Ignoring the pain,   I hauled back home quite fast. 
I’m sprawled out on my bedroom floor again, resting. This time I’m not leaving a huge puddle outlining my sweaty body. Immediately upon entering the house my boots were removed.  Sweaty hiking clothes were peeled off.  I walked directly into the shower.  Clean and cool now it feels good to be sprawled out.  

My mom once told me the world is the biggest classroom. Travel and learn.  My dad encouraged me to go now when I can, while  I am physically and mentally able.  
Travel enriches me on so many different levels.  But what about the Parkinson’s?  What about the back pain.?  
 I can and do have the same issues wherever I am in the world.  So why not travel? 
Two weeks from today I will fly to Paris!

C minus 17, but who is counting

Getting up off the bedroom floor and looking down at the carpet I see the complete shape of my body. It’s an outline left from my sweat. I would have drowned in that pool if the carpet had not  been there to soak it up!

Just a few minutes before,  I came in from the walk and plopped down on the couch.  Both hands were tremoring.  And I mean TREMORING!  I called to Charlie.  “Come here, you have got to see this!”  He took a look and said “Oh yeah. Look at that.  Remember you have just put a big strain on your body.  It was really hot out there. Cool off and rest”. I managed to remove my boots and socks and stagger a few steps before collapsing on the bedroom floor. The walk was the fastest I’ve walked 5 miles, I am sure of  it.  I didn’t have my backpack on thank goodness!   It was enough to be out in the almost 90° weather walking  on sidewalks, roads and a paved path. I learned from bicycling that  heat  generates up from black top. In addition to the 90° air temperature that makes over  hundred degrees walking. Add to that,  I woke up this morning with a terrific headache. Charlie and I talked about being able to have the discipline to keep moving toward our goals in adverse conditions and today’s walk was a great example of it. I am TOUGH!

About three years ago I joined the pilgrims of the Portlandia chapter of the American Pilgrims on the Camino for one of their Sundays strolls. Even with my trekking poles I was so slow  that I fell way behind the entire group.  Pilgrim Robin had the “sweep up” role on the hike.  She and I visited about our camino experiences as the dust settled from the other pilgrims ahead of us.   I was slow, uncoordinated and in pain.

This past  Sunday my friend  Carol and I joined the Portlandia group for the third Sunday stroll and the “shells ceremony”. This lovely tradition is a  blessing from past pilgrims to the new pilgrims who will be walking the Camino within the next month. Two things were especially meaningful to me as I shared this experience with the 60 plus pilgrims gathered. First,  to be able to walk unassisted with a strong pace near the front of the group while carrying on a conversation amazed me.  For two miles I easily navigated speedy straightaways,  tight switchbacks, traverses up and down  steep creek-bed banks. Wow! I’m sure that no one else  could understand what it meant to me to be able to move with such agility.The ear to ear grin may have been seen yet not questioned.  At first  I held this other picture in my mind, the one of the slow pilgrim disabled by Parkinson’s Disease. This walk greatly diminished that image.
Secondly,  I was touched to receive a blessing from people who have walked before us  and who will be walking with us on the Camino in their hearts.I will carry the new shell for them.

As Charlie and I left the driveway of  our  house this morning I recalled the time  I just started to walk again.  I walked out the front door  to the mailbox and back.  Next time I walked out door, I made it across the street. Then  I made it to the sidewalk and down to the next driveway, out  the corner of the street, to the hospital and back around the hospital and back of the Butte. And before too long I was up and down the Butte three times in a row.

There’s no putting a price tag on these experiences.  There is no measure of  my gratefulness.

Charlie and I talked more about discipline. The discipline to walk when you have a splitting headache. The disciple to walk when recovering from an injury. The disciplie to walk when your body is frozen with Parkinson’s Disease. The discipline to walk even if that means slowly putting 1 foot in front of the other.  Discipline to keep moving. Keep Moving. Keep moving. keep moving. Discipline  and the spirit of determination to fight Parkinson’s as it tries to gain  controll   That’s what keeps us going in life.   You  have to put one foot in front of the other when your heart is broken when your spirit is shattered when you have lost a loved one when your job sucks. Take one little positive action,  one little step at a time, moving forward. Soon the miles are covered, the hardship is overcome and you come to that  place of peace and where you can rest for a while.

 C minus 17 days. The countdown has begun. 

a late night post to Buddy System on the Camino

Hi girls I am a middle aged woman with Parkinson’s Disease. I move slowly but steadily. I have traveled in various parts of Europe but have loved no adventure more than my Camino experiences. There is no better feeling than to know you have the courage and skills to travel independently. The Camino is all about meeting fellow pilgrims who become your family while you walk. Please do not travel in fear. Be alert and cautious but not fearful. I offer you these general suggestions, some you have read about and others may be new to you. Please feel free to comment and add. Here is my random thought flow…
Leave jewelry and anything more than basic make-up at home.
After you arrive in Europe rest and acclimatize. Jet lag can cause you to be groggy and you should be rested and alert when you start.
If you walk in shorts you are likely to get the Camino rash from your ankles to your knees. Its a mystery rash that goes away. Also be prepared for some chaffing between your legs. And most important is foot care! Walking 500 miles fighting blisters is not fun.
Its very fun to have wine or beer with friends in the evening. Walking back to your albergue with a buzz on and tripping and getting hurt is not fun. And beware of Camino Casinovas.
Having cash is fun. Get your money from an ATM just inside the doors of an open bank. If you have trouble with card or the machine eats it help is nearby. Keep your cash,cards and passport on you at all times.And always have a couple days of cash in small bills on hand. Take your important stuff and money in the shower in a plastic bag.
Listen for bicyclists coming up behind you on the narrow trails. They are supposed to ring their bike bell or call a warning but many dont, or you may have your music up too loud to hear them. Be alert so you dont collide
The water in the fountains along the WAY is good to drink unless otherwise marked. This is not to say you wont have a tummy ache, bout of diarrhea or catch a cold. Have a few tablets of whatever you use at home and then visit or send a friend to the farmacia to get more. Email pictures of your bottled prescriptions and travel documents to yourself so that they can be viewed from a computer in town even if you lose your cell phone. The farmacia was able to fill my lost Parkinson’s meds without a question.
. Remember that you can always get a taxi and almost always ride a bus. The bus is cheap and modern and can catch you up to friends if you need to rest a day. Luggage can be sent ahead so a small string bag with your rain jacket and water bottle may be all you need to carry.Weight makes a big difference, especially when you are not at your best.
You may walk quite a ways before finding a bar with a bathroom. Know “how to go” outside. Carry a little tp and a plastic bag. You are going to be appalled at where people “go” so dont contribute to the mess.
When you find your albergue for the night… request a bottom bunk if you are one of our older sisters or have trouble climbing ladders. I hang my sarong ,towel and jacket around my bottom bunk to create a visual barrier between myself and that 30 year old guy from Holland snoring three feet from my head. Don’t get anxious about finding a bunk for the night just because you are slow like me. There are many more options than albergues. Private albergues take reservations. Casa Rurales are lovely option bed and breakfast lodging and there are often rooms connected with bars. Keep asking.
Dogs have been watching people walk the Camino for centuries. They will not trouble you unless you step inside their barn to pee! Just a warning.
You will come across herds of beautiful horses, sheep and cows on open range and will meet up with those being herded. They, like the dogs, have “pilgrim watching” bred into them. But have one spook as you try to pet it may result in a camino ending kick bunt or bite. Record their beauty with your camera.
I personally see no reason to walk in the dark. And those headlamps you wear to find your way to the bathroom in the albergue shine wherever you look, which could be right in my eyes. A tiny flashlight is fine.
I hope these other “health and “safety” issues are useful. I will be landing in Madrid Sept 9 and taking the train to Pamplona. I will be walking until I fly home on Oct.6. If you want to walk with me be prepared to pray, sing, tell stories, eat ice cream at least three times a day and laugh a lot. At my slow pace there is plenty of time for these activities. I always wear a pink cap and I have a blue pack with camino patches
Buen Camino peregrinas. Carol, the Pilgrim with Parkinsons

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!

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 physical 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?   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.

PWP Goes Hiking

PWP (person with parkinsons) Goes Hiking



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.