Blog

Back on the bike…

There are still patches of snow where the warm finger of the sun’s rays have not been able to reach.  Mounds of ugly snow are pushed to the ends of parking lots,  their melt water streaming to find a drain.  The temperature has risen up to the 40’s.  It’s time to get the bike out.

But its not just any bike.  Its a Co-motion tandem,  Oregon green with bright yellow trim. And it has a name.

Grepeedo

The green periscope torpedo tandem.  It takes a captain and a stoker to ride a tandem. Communication between the two has to be good or you end up getting really frustrated with each other.

As we get back on the bike (today is the 2nd day we have ridden) we are reminded how important communication is.  Its a reflection of our life, of our marriage.  It makes things work.

 

moments of victory

This appeared on the Davis Phinney Foundation FaceBook page today.

Moments of Victory® – Carol Clupny Doesn’t Let Parkinson’s Slow Her Down
Living Well, Moments of Victory
March 16, 2019
What has your journey been like since your Parkinson’s diagnosis?
After being diagnosed in 2008, I continued to work as a Speech-Language Pathologist. When I retired at age 52, I took to the road, literally. In the following years, I walked over 1000 miles on ancient pilgrimage trails in France and Spain. My husband, Charlie, and I started cycling and pedaled three times on the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI) with the Davis Phinney/Pedaling for Parkinson’s team.
Deep Brain Stimulation and major back surgery in 2016 provided amazing changes in my physical and mental skills. I wrote a book about some of my adventures which will be released in mid-March 2019. The completion of The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease was certainly a victory for me.
How do you live well each day?
Both my dad and my grandpa lived until they were 94. That’s a lot of years for me to live well. Recovering from back surgery and writing the book kept me off my feet for a while. Now I am recommitted to my health. Good nutrition and exercise are priorities. I approach each challenge with a positive view; never saying “I can’t” but rather “How can I do this”?
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
When I was first diagnosed, I wasted time being discouraged about my future. I wish I would have had a glimpse ahead to see how well I would live. So much good has come into my life in the way of friends, opportunities and adventures that may not have occurred if I had not received a diagnosis of Parkinson’s.
CAROL CLUPNY’S PHILOSOPHY
What do you wish everyone living with Parkinson’s knew about living well?
“The more you move the better you feel.” “You are what you eat.” “Attitude is everything.” “Love yourself.” “You are going to be okay.”
We hear these phrases so often in our lives that we take their truth for granted. Actually, they hold the keys to living well with Parkinson’s. Exercise, nutrition, a positive outlook, loving the body you are in and knowing in your heart that everything will work out are keys to living well.

In the news

For the past several days I have received emails with links to newspaper articles inviting people of the community to one of several book parties. These articles were written by what I will call “e-interviews.” I sent a press release, a response was given for some pictures, or “please answer these questions”. Amazing how this interview process has changed in the technological world. It actually works well for me as some times I cannot keep a string of thoughts going in the right direction. It gives me the opportunity to reread, reflect and restate. These articles have been accurate, using my words.

Recovered!

Charlie turned the car the opposite direction of home. “Gotta stop at the hardware store” he said. Oh my, I knew to get there from this direction meant several obstacles: a stop sign, a hard right, two speed bumps, a gravel parking lot with a huge mud puddle and the transition between the gravel and pavement. Putting my right hand over the neurostimulator implanted just below my left collar bone and cringing was my way of saying “not a good choice”. It had been just a week since the battery pack had been replaced. There were nearly 15 dissolvable stitches holding the pocket of flesh closed. I expected a good jostling through this obstacle course. It wasn’t that bad.

It’s over a month now since that implant. It appears that the surgeon located the device slightly higher and at a different angle. I am thinking there is about 50% less “bounce” when I step. The stitches are gone and just a little itchy discomfort remains.

Still, I think of it as strange, yet a minor inconvenience to all the benefit I get from Deep Brain Stimulation.

Who took the cover photo?

and why its so important!

I don’t know for sure who took this photo. It has to be one of two people. The two women in front of me ( me with the green coat and pink hat) are walking companions from the US. The person next to me appears to be a mystery pilgrim. And the two other walking companions were behind us. One of them took the photo, but each of them think it was her shot.

I did as much detective work as I could. I found the photo is each person’s photo stream. I saw that the photo was taken with a iPhone 5, which both of them were using.

I searched through all the pictures I could find that were taken by any member of this group. I found other pictures of this mystery pilgrim, and none proved her to be without a doubt anyone I knew. I love this picture. I also love both my dear friends who had their iPhone5’s out that day to catch such a marvelous shot. So, not knowing what else to do, they both got the photo credit.

Another friend worked on it to get it up to the parameters of a cover photo. And then I relied on a hired designer to make it look a bit more like a painting than a photo.

What else could I have done to solve this mystery?

The Battery is Dying

The neurostimulator device is where the battery is located.


Medtronic is a leading manufacturer of medical devices.  Their products include pumps and pacemaker type devices, including Deep Brain Stimulation neurostimulators. Other producers of these devices include Boston Scientific, Abbot and St. Jude.

I did not have a choice at the time of my implant.  The Medtronic Activa was placed in my chest, just below my left collar bone five days after the probes were placed in my brain.  The wires were positioned from both sides of my  head, run down the back of my head and side of my neck  and needed to  be pulled into place.  

In about a months time, I returned to the clinic for the device to be turned on, and set.  That was quite the experience. You can read more about that in my book The Ribbon of Road Ahead  to be released in early 2019.

I have had a total of four tune ups which have been successful in limiting my tremors and several other symptoms of Parkinsons Disease.  I was told the battery would last 3-5 years, depending on the strength of the voltage.  It   has been 2 years and 9 months. Mine was rather high on one side.  It has now drained to the warning level.  I hope to have surgery to replace it within the month.

Our Lady of the Journey

Our Lady of the Journey,  wood sculpture, artist unknown  Located at Mission Santa Inez, Solvang CA

Unexpected Encounter

On a recent visit to my sister Beth in California, I discovered that my husband Charlie had visited 16 of the 21 Spanish Missions.  These Missions were founded by Spanish Franciscan  priests between 1769 and 1833 to bring the Native Americans to Christianity and a whole lot of other more political reasons.  I will let you seek out that information in the history books.

I also discovered that 4 of the remaining 5 missions were within a few  hours drive.  We packed water, a few snacks,  my trekking poles and ourselves into the back seat of my sisters sedan.  With her husband as chauffeur and Beth as narrator,  we went to find these missions.

Each mission compound was unique in its location, state of restoration and amount of use.  Some were out in the countryside and had become state parks.  Others were in urban areas and were active parishes.  All were similar in that the  church had a long  narrow nave and an altar rail.  The walls of the more active churches  were brightly painted with flowers and leaves and birds of the area. Different and alike, they all held surprises.

My favorite surprise of all was when I walked into an art exhibit at Mission Santa Inez.  I entered the Madonna room and saw familiar images of our Lady in paintings of various sizes.  I turned and looked to the right and then to the left and admired the artwork.  As I started through the threshold into the next display  I felt pulled  to go back.  I turned around and there she was, standing  behind some glass.  Our Lady!  (now my lady to me because I instantly claimed her).  Our Lady of the Journey.   What Journey?  Who  created her image? Why was she here, unclaimed, a statue of wood, in this room of paintings, all signed and dated by their artists?  I had so many questions about her, and they have remained unanswered despite my research.

In spite of not knowing her, I  invited myself to join her journey. (It  is not unusual for me to invite myself along)  She didn’t say “no”.  She just  stood and looked at me with welcoming eyes.  So it must be ok.  

I am excited to follow Our Lady’s itinerary.  Hmm, I wonder when the journey starts.

Getting Started

start over, then create something better.

unknown

Learning something new can be difficult.  Especially if I am a 60 year old woman who has lived well for 10 years with a diagnosis of PD. I am using Parkinson’s as an excuse again.  My  excuse is if I can’ meet the challenge of starting a new blog I can blame the Parkinsons.  PD, I am going  make this work.

And if I don’t make it work?

Then I will blame it on just being 60.