This is my story and I am sticking to it !

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THIS IS TAKEN FROM MY FIRSTGIVING FUNDRAISING PAGE. THANKS SO MUCH TO ALL OF YOU WHO DONATED TO THE PARKINSON’S CENTER OF OREGON ON MY BEHALF.  ANY ONE WHO WOULD LIKE TO ADD TO THEIR RESEARCH FUND I AM SO VERY GLAD TO PUT YOU IN TOUCH WITH THE RIGHT PEOPLE!

     

           

 

 

Well friends, its nearing time for me to complete this fundraising effort. Remember the Parkinson’s Center of Oregon is a non for profit entity and your donation is tax deductible. Hope you are able to help me with my goal of $10,000.

HEY…I made it home. I am so pleased to have walked nearly 400 of the 500 miles I planned to complete on foot. I learned alot about dealing with Parkinsons disease during a grueling 32 day walk! But for the most part it was a very good trip.
Thanks to all who have contributed. There have been several off line contributions. We are half way to the GOAL of $10,000. Please donate to the Parkinson;s Center of Oregon!

Thank you for visiting my fundraising page for Parkinson’s research. This page is established as a way for you to donate to research programs at the Parkinson Center of Oregon at Oregon Health and Science University (OHSU) in Portland, OR.
On June 2, 2012 I will embark on a 500 mile walk on the Camino de Santiago in northern Spain with family members and friends. I have given this group of 10 wandering pilgrims the name “C-TEAM.” This is going to be a very difficult journey for me due to my Parkinson’s as we will walk at least 15 miles a day for over 30 days. Yet, to me it is very worthwhile to raise funds for research into a disease that wants to take my mobility away.
This page provides a very simple way for you to donate to Parkinson’s research in my honor. And when you are done…hit the share button at the top and send my page to all your friends and then follow OHSU Parkinson Center of Oregon on Facebook.
The first day this was posted $1000 was donated! Any amount will make a big difference. It all adds up. I hope to reach $10,000 before I return July 17. Please join me in reaching that goal by donating today.
I will be blogging along the way. Watch for further information on how you can get on that blog and read more of my story.
The Story of my diagnosis
The year I turned the corner on the second half century of my life, I noticed more than the usual middle age-ed-ness creeping in. My balance was off, my right arm did not move as well, I experienced “pings” or tiny spasms in my legs.
My husband gave me the most wonderful 50th birthday gift…a three day women’s kayaking adventure in the San Juan Islands. Being somewhat athletic, and enjoying all things outdoorsey, I eagerly awaited the date of the trip. It was a lovely, beautiful trip and yet I had a very difficult time. My paddling partner pulled my weight and hers and on the final leg of the trip one of the guides paddled me back to the pull-out site. Something was going very very wrong with my body.
My family doctor sent me to a kind neurologist, an older gentleman nearing his retirement. As he administered the exam, I could see I was not completing the tasks easily. My mind seemed to know what it was supposed to do, yet it wasn’t coming out right. He said “Here is a prescription for some pills. I don’t want to give you a diagnosis yet. We will know more when you have taken this medication a few weeks.” He walked me to the door, and putting his hand on my shoulder said “You think you have Parkinson’s Disease don’t you? ” I responded “I’ve done my reading”. He replied “If this medication makes you feel better, we will have some answers”.
I went on with life, a mom of two active boys, a wife to Charlie, a Speech Pathologist, a Director of a Speech and Hearing Department, a hiker, climber, backpacker, horsewoman, skier, fisherwoman, traveler and now a wanna-be sea kayaker. It was a brilliant September Saturday morning and I was up early and zipping around the house doing chores and cleaning with a vengeance when I was stopped in my tracks by the thought “CRAP! I feel really good. The medicine is working. That means….”
The kind neurologist sat down with me again. He said “Now you need to get a second opinion. I am going to write a letter to my friend Dr. Jay Nutt at Oregon Health and Science University. He started a clinic there for people with Parkinson’s and it’s the best around. “
It took forever to drive the 190 miles to my appointment there. When I arrived, I got another complete neurological work up by Dr. Amie Peterson. She listened carefully as I tried to recall all the symptoms, watched intently as she put me through the examination and concurred with the diagnosis…young onset Parkinson’s Disease. She sent me to the Occupational Therapist, the Physical Therapist and I had to laugh when I saw one of my own profession, THE SPEECH THERAPIST! All answered my questions and gave good advice.
AND I asked a billion questions, read books and articles, and saw videos of people in advanced stages of the disease and decided I JUST AM NOT GOING TO GO THERE! I have too much living to do.
I took my medicine, joined a Tai-Chi class, decided to learn to play blue grass music on the guitar, shot baskets on the my lunch break, kept my chin up and kept moving.
This story can go on and on…but the most important thing is that I have a chance to give back to a fantastic institution that has provided wonderful care…and pay it forward by raising some money for research so maybe the next 50 year old woman will hear “Yes, you have Parkinson’s Disease and we now HAVE A CURE”.

Battling Parkinson’s disease: ‘keep moving’ and fight it with attitude

Although I generally shy away from publicity, I have learned that you just “do it” when its for a good cause, PLEASE FOLLOW THE LINK

Battling Parkinson’s disease: ‘keep moving’ and fight it with attitude

Cross training.

How does one prepare your body for the Camino.?

About 20 some years ago Charlie and I were day hiking on a glacier on Mt, Rainier when we met up with a group of 65 plus year olds base camped for a summit attempt that night. I was particularly interested in visiting with a woman in the group about her training. She commented that the best way to train is by ” doing it”. She walked several miles each day near her home. On weekends she hiked steeper and longer trails.

I believe this fits for the Camino. Now that I have experienced my round 1, I am cross training for Camino 2. Primary focus has been tilt the wine glass slowly towards the person pouring and smile longingly for a refill. Secondary focus is clanging a full beer mug in a toast to today’s walk with cheers around the table and not a drop spilled.

Day 1. 4 hours guitar playing. One beer
Day 2. One hour horse riding 1hour stretching. One wine
Day 3. Six miles walking 2 beers
Day 4 10 miles bike ride 2 whines

So, as you can see, if I continue on at this pace I will be a pickled pilgrim by April 26.

GEAR UP for the Camino

I have been spending time checking my gear.  My mochila (pack) is a Gregory Jade 38.  It is still in good shape after last years training hikes and Camino trek. I don’t care for hydration bladders so I am considering a waist pack for easier access to my water bottles. I need to add my APOC patch to my C TEAM and Camino Forum patches

Trekking poles need to be replaced.  I bought these poles at a sporting goods store in Enterprise Oregon when I realised I had left my REI poles at home as I was packing for the trip  up the Hurricane Creek in the Eagle Caps.  They cost $29.95 and served me well for years.

Clothing…always fun to shop!  Recently purchased Ice Breaker tights and a quarter zip  base layer shirt. Columbia omni shield pants are a little heavier but also water resistant stretch and zip off.  My husband insisted on a new rain jacket and bought me a Marmot Minimalist in bright green! We added REI rain pants for a very packable light weight combination.  New underwear, bras and socks ave yet to be purchased. I am  going to try liners with my smart wools.  I will be taking my signature pink baseball cap, a light stocking cap, light weight gloves, a fleece, another pare of zip offs, a long sleeve guide shirt, a tech t-shirt, a neck buffy and a bandana and a sarong.

The final word is still out on hiking shoes.  The PT and orthotist are working hard to get my right ankle to bend and my calf muscles to loosen up.  It  may be that I will be wearing a brace of some type on my right leg.  I have been wearing some New Balance mid high trail walkers.  Also in my collection are oboz, keen, vasque and asics.

Last night I was shopping around a Sportsman Warehouse and saw a Down blanket that weighs in at one pound.  Also bamboo blanket, which I had never considered.  Currently, my sleeping combination consists of a silk sheet and flannel zip blanket.  I think that will be adequate as most of the albergues had big wool blankets to throw over the top.

Other items…hmm…a spork, a multi tool, tiny flashlight or head light,  camp towel, dry soap,
tiny clothespins, a length of parachute cord, electrical adapter, iPad and charger. Money belt and document pouch.  Prescription meds, a small supply of ibuprofen, leg cramp pills etc to get me started. Antiperspirant and talcum powder. Blister kit.  Smalll first aid kit including peptobismal tabs cold tabs. Comb and hair ties, kleenex pack, sm. pkg of toilet paper,
tooth brush and sm toothpaste, suncreen, lip balm, and a little makeup!

Last year I found some great compression bags at Wal mart.  They were inexpensive and a bit noisy though and I may change to packing cubes. 

Have I missed anything?
Whatever I forget I can easily buy there.  The Spanish economy can benefit from my support.

Scars and guitars

Scars and guitars….
I have been looking at alot of guitars lately. As in many aspects of life I need “accomodations” (or so I think). Parkinson’s disease has made me “special”. I was looking for guitars with a bit shorter neck, a bit narrower body. I looked at my first acoustic guitar. It was my brother’s. He sent it to me for my 16th birthday. There was a lot going on in my life at that time. And not all of it was happy. The guitar gave me joy and helped heal some of the wounds. Music does that to you, you know. That guitar is no longer playable. But I remember its first major scar. We were at Meadowood for a SEARCH retreat, staying in a small lodge which has a sleeping loft. Someone knocked a pop bottle off the balcony and it skidded across the face of the guitar and left a long scar. Funny, I remember that incident so well, and that it left a scar. I don’t remember the songs I played that weekend.

Fred, playing his jazz guitar, wears a bracelet bearing his son’s name. His beautiful teenage son died in a swimming accident. The loss of a child sucks the breath out of the parents. Fred works on those wounds through writing jazz . His wounds are still open and bleeding. Someday they will heal over…into scars. The music helps him through the dark nights.

The old guitar maker called and invited me over to try out some guitars. First he had me play the first guitar he made for himself. It was full of scratches and dings … much like himself who for so many years had toiled and labored to make a living. This guitar has autographs. . The autographs of friends, bluegrass and country artists… autographs on his heart…memories of good times that more than erase the scars on his arthritic hands.

The young man guitar player let me try his cherished guitar. It has been replaced for daily playing, but he will never part with it. I felt honored to place my hand and around its neck and feel where the oils of his hand had worn into the wood. Holding the guitar I could see the dings on the face and scratched up pick guard. Scars you would never notice from a distance…scars that are apparent when you are close enough to embrace.

I looked at my current guitar. It has some dings in it that I put there. Its just starting to develop its character. The scars aren’t deep. They are not obvious unless you get up close. They are my scars. I think I will keep my guitar …I think I will give  up playing other’s guitars.  I have my own scars.

 
 
 

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Circles

Circles never start, nor do they end. They just are. And friendships like these never start and never end. They were meant to always BE. Miles and marriages and jobs and kids and life take us away from each other. Somehow we reconnect. The world is a small or large as it is. 33 years ago we shared classrooms and therapy rooms and the sidewalks of our college campus. We studied late at night and helped each other memorize the nervous system and Dr. Hahns theories of language expansion. Eventually we drifted off to excotic places like Hermiston and Stockton and one even landed in Australia. Debbie entered the picture and tied another circle onto ours. The California circle never started, never ended and now it is joined us together.
Susie wants to start a quiet revolution of change. Carol wants all to find peace in their own hearts, and in their homes and communities before we take on the world. Dana wants to do something completely different than speech path, now that she is all grown up. Debbie seeks quiet and peace of retirement…isn’t it about time? And Jules, we miss your accents developed from living in three regions of the world, and we miss your wisdom and your fun (and I miss your moms home made grapejuice). Julia what is your wish?
The world is very small, really. I am glad for these friends who were in my circle of academia. We meet again near the end of our careers. Circle still intact.

Looking back…

Pilgrims on the Camino Frances walk across Spain from East to West. So intent on finding the next yellow arrow for direction, they seldom look back. Dwelling on the past, the “should of’s”, the “I wish”, the regrets…only adds weight to your mochila and burdens one in their Camino. But a quick look over the shoulder to catch the beauty of where you have come from, the mountains and valleys and rivers you have crossed…well, that lightens your step. If you must look back, see the beauty in the road you have walked. See how very far you’ve come.

My Why

At the age of 50 I was diagnosed with early onset Parkinson’s Disease. I decided to do everything I could to combat the progression of this neurological disorder. Shooting baskets and playing guitar were some activities from my youth that I returned to. I added tai chi, riding rode bikes, boxing and kayaking to the list of traditional and non traditional treatments for Parkinsons. I took my medicine and suffered the side effects which made me feel like I was going crazy. Some job changes, medication adjustments and alot of heart searching resulted in the peaceful coexistence I share with the wrotten roomate in my body, Mr. Parkinson. Parkinson tries to steal my facial expression, my voice, my ability to swallow, my handwriting. He made it difficult to pull myself up on the horse or swing my leg over the bike seat to go for a ride. Although I have Parkinson’s, he can’t have me. I will not let my voice and my mobility be taken away by this uninvited guest. I am moving on…
 
On June 1, 2013 I stepped out the door the last time.  I had worked for that employer for 32 years.  I got in my car. We drove to the airport on got on a plane to Paris.  Adding two more to our C-Team group, we made our way to St. Jean Pied de Port France.  We began walking the Camino Frances to Santiago de Compostela.  32 days later we were sitting in front of the Cathedral.  Amazed.
 
Now I return,  The first Camino left me blistered and bruised and I had some amazing bus and taxi experiences, but did not walk the  entire 500 miles as I planned.
 
So I go back to walk.  This blog is named hop skip and jump because I will be traveling across Spain by foot, by bus, by taxi, by train, by bike and if I can swing it even by horse. I will meet my traveing companions, my fellow pilgrims along the WAY.
 
 

Scars and Guitars

fred
Scars and guitars…. I have been looking at alot of guitars lately.  As in many aspects of life I need “accomodations” (or so I think).  Parkinson’s disease has made me “special”.  I was looking for guitars with a bit shorter neck, a bit narrower body.  I looked at my first acoustic guitar.  It was my brother’s.  He sent it to me for my 16th birthday.  There was a lot going on in my life at that time…Expand this post »
Scars and guitars…. I have been looking at alot of guitars lately.  As in many aspects of life I need “accomodations” (or so I think).  Parkinson’s disease has made me “special”.  I was looking for guitars with a bit shorter neck, a bit narrower body.  I looked at my first acoustic guitar.  It was my brother’s.  He sent it to me for my 16th birthday.  There was a lot going on in my life at that time.  And not all of it was happy.  The guitar gave me joy and helped heal some of the wounds.  Music does that to you, you know.  That guitar is no longer playable.  But I remember its first major scar.  We were at Meadowood for a SEARCH retreat, staying in a small lodge which has a sleeping loft.  Someone knocked a pop bottle off the balcony and it skidded across the face of the guitar and left a long scar.  Funny, I remember that  incident so well, and that it left a scar. I don;t remember the songs I played that weekend.
Fred, playing his jazz guitar, wears a bracelet bearing his son’s name.  His beautiful teenage son died in a swimming accident. The loss of a child sucks the breath out of the parents. Fred works on those wounds through writing jazz .  His wounds are  still open and bleeding.  Someday they will heal over…into scars. The music helps him through.
The  old guitar maker called and invited me over to try out some guitars.  First he had me play the first guitar he made for himself.  It was full of scratches and dings … much like himself who for so many years had toiled and labored to make a living. This guitar has autographs. . The autographs of friends, bluegrass and country artists… autographs on his heart…memories of good times that more than erase the scars on his arthritic hands.
The  young man guitar player let me try his cherished guitar.  It has been replaced for daily playing, but he will never part with it.  I felt honored to place my  hand and around its neck and feel where the oils of his hand had worn into the wood.  Holding the guitar I could see the dings on the face and scratched up pick guard.  Scars you would never notice from a distance…scars that are apparent when you are close enough to embrace.
I looked at my current guitar.  It has some dings in it that I put there.  Its just starting to develop its character.  The scars aren’t deep.  They are not obvious unless you get up close. These are my scars.  I think I will keep my guitar.