Walking out the PD blues

Wednesday January 29, 2014
8:30 AM: Whidbey Island, Washington
Weather: 46 F, calm, cloudy and misty

Down, self absorbed and no motivation. So I feel, on this dark and misty morning. My downward drifting mood was brought to a conscious level when I was then reminded of things that I simply had not done as planned.  In a sudden desire for solitude I pulled on my fleece sweater, grabbed my Filson hat and whistled for Bella. Time for a walk.

Once outside I picked up my walking stick and then paused and surveyed my partially completed landscape work.  More accurately my eyes were assaulted by large piles of blackberry canes, somewhat ready to haul away.  I wondered why I had started and created this ambitious mess.  A good friend had seen the piles and has graciously offered to help me haul them away.  What would we do without friends?

While I paused Bella had sit down at the trail entrance and was waiting patiently. She looked around in her care free manner and then looked back at me and gently reminded me to forget it for now.

I walked to the trail and slowly followed her to its intersection with the larger trail that encircles the wooded area owned by friend and neighbor, Vivian.  After only a few steps, I began to feel the regenerative power that nature has.  I was greeted by the dark and quiet beauty of the trail meandering uphill among the trees.  I look for the familiar things as I walk. Things I know well and like to think of by name: the wild rhododendron, the trees of fir, hemlock, cedar and alder. This time of year I can see the remains of enormous stumps that are left from the first cutting of the old growth cedars many decades ago. Time slows down in the forest.

I walked slowly but was annoyed by the lack rhythmic movement of my left arm.  PD has taken that away and left a rapidly opening and closing hand and taut muscles in its place. As I approached the highest ground of the walk I stopped and enjoyed the incredible stillness and quiet of the morning.  I thought of the peace that Emerson or Muir or maybe Frost had enjoyed amongst other forests not so long ago.

“You should consider DBS(Deep Brain Stimulation Surgery) sooner than later” were the words of my neurologist as I can best recall them.  She went on to explain that tremors are among the most difficult symptoms of PD to treat with drugs. I have what is called tremor predominant Parkinson's. She followed her statement with, “I think that you would be an ideal candidate.” Still, a lengthy screening process and then an invasive brain surgery that does have risks, is, for me, tough to commit to.  I rationalize by telling myself that the drugs are doing their job and I am doing all right.  Is that self delusion?  Am I really doing all right? I am 64 years old, I do not drive and the drugs probably work about half the time.  People have now been shown to benefit from DBS for more than ten years.  With those who have had the surgery even those who are not drug free are said to be on reduced doses of the drugs and yet I hesitate.  Underlying the undeniable symptomatic success with DBS is the truth that the disease remains and is marching on, probably unaltered. Michael J. Fox once said no more surgery for him until they come up with surgery known to alter the course of the disease. That sounds like clear thinking to me. However, I cannot say that I have ruled DBS out. I will consider it in more detail as spring goes on, perhaps making an appointment to talk with one of the surgeons in an attempt to put it on a personal basis.

I moved on from thinking about PD to absorb the solitude of the forest. No birds, no scampering deer, just the trees which don’t even whisper.  As the mist turns to rain I feel my mood lifting and when I finish my walk with Bell I will split some firewood.

Shaky in Coupeville

The Wind Storm

Forecast: 1/10/2014

* Wind... southeast wind 25 to 40 mph with gusts to 60 mph are 

forecast to occur tonight. The winds will shift to westerly 

Saturday afternoon and could reach 25 to 40 mph with gusts to 

60 mph late Saturday afternoon and night. 

* Impacts... downed trees and power outages are likely

I awoke to the beep the electric smoke detector makes when the power goes off.  I thought that a flash of light had also lit up the room but now I am not certain of it. There was complete darkness with the the power out but not silence.  My ears were assailed with the roar produced by a strong wind running through the fir trees that surround our house. The loss of power in a windstorm on Whidbey Island is not unusual.  The wind separates branches from tall evergreen trees and sends them flying into power lines.  A windstorm of this magnitude with gusts pushing close to 60 will frequently cause our power to go down.

Carolyn had awakened as well and noticed that Bella, our yellow dog, was not in her bed. Bella is frightened by windstorms and usually attempts to climb in bed with us, however tonight she had gone downstairs and wanted out. Carolyn slipped out of bed, put on her robe and went downstairs to tend to her. 

I lay motionless except for the twitching of my tremors and listened to the storm rage outside. Frequent gusts pushed it to a higher pitched sound accompanied by a spraying of the roof with debris from the trees.

Doug Firs near the North end of our house

Soon I could hear Bella breathing rapidly and the sound of her paws on the stairs as she and Carolyn returned guided by flashlight. Carolyn moved Bella's bed closer to ours and then got back into our bed.  She continued to pet and gently sooth Bella. 

 The weather forecast had predicted this storm and I had prepared for it. I purchased additional batteries and checked to make certain that my flashlights were ready.  I had split and brought in plenty of wood so that power out or not, the house would be warm. In spite of such preparation, a wind storm makes me uneasy, making any effort to return to sleep kind of tough.  I lay in bed and wonder whether the big Doug Firs near the North end of our house will stand another storm or this time will they give up and come crashing through the roof?

I sensed the change in Carolyn's breathing as she returned to sleep. Bella's unease continued and so did mine. 

Now the howling wind outside induced a disturbing sense of loneliness.  My mind drifted and I wondered about friends who had long ago been an important part of my life but now I do not even know where they are.  Whether they are alive or dead. I thought of my cousin Larry who passed away just a few days ago. Little more than a year ago at a family reunion he had stood like a majestic tree surrounded by his beautiful family.  Now, the storm of cancer has taken him from this life on earth. Even as I believe that death is not the end a deep sense of sadness enveloped me.

I listened for any change in the intensity of the storm and determined a perceptible decrease in intensity had occurred. I repositioned Bella's bed and put her closer to me. I am not certain which of us soothed the other the most. 

Then the smoke detector beeped and the night light blinked on. Our power was back! This positive sign lifted my spirit a from the gloom and I slipped out of bed pulled on my robe and carefully made my way downstairs. I celebrated the return of our power with a glass of water and gave Bella, who had faithfully followed me down, a piece of string cheese.

Good night!

Walking in Florida

This morning we took a walk. Daughter, Grandkids, Carolyn, myself and a black dog named Harley. Our destination was Starbucks in downtown Hollywood, Florida. A cool breeze brought to mind the dangerous cold that has descended on the country further North from the East coast to the Midwest. Here in South Florida the chilly breeze was softened by sunny warmth, swaying palm trees, lush tropical yards and a perfectly blue sky accented by puffs of white.

I brought up the rear of this unlikely parade. Arms swinging unnaturally stiff with hands fluttering at their ends like leaves on a branch high in a tree. So we walked, stopping occasionally to allow Harley to apply her signature by way of a pee. It could not have been more pleasant anywhere that I could possibly imagine.

Those of us who live with PD are never completely free from it or at least thoughts of it. And so the pleasantness of my surroundings gave way to thinking of PD issues that have crept in to incite a personal struggle recently. This being ropinirole and its list of secondary side effects. These side effects have moved beyond words on a product insert to disheartening reality. The troubling list includes dizziness or low blood pressure episodes, uncontrollable tremors, shortness of breath, chest pain and compulsive behavior.

My mind switched away from self as we approached Starbucks, that great coffee house that had been unleashed on the world from Seattle way back in the 1970's. 30 bucks later we were well equipped with coffee and treats. Starbucks is not for the thrifty minded. We took our troupe across the street to a park and playground where the children played while we enjoyed the coffee and the unique respite in the sunshine.

The children and their parents were a delight to watch. It quickly became apparent that this South Florida playground was a world playground. A simple kind of harmony played out in front of us in form of children from Europe, Latin America and America joyously playing side by side. The children were carefully watched and fawned over by a mix of generations from parent to grandparent. I reflected on the short span of life we are given as I enjoyed the sight of these beautiful children who will grow to adulthood soon enough and carry the responsibility of adults.

The sun is slowly sinking as I sit on the patio and tap out the remaining words of this post with trembling hands. Thinking of the children a sweet rhyme comes to mind:

"Red and yellow black and white
They are precious in his sight
Jesus loves the little children of the world."

Reassuring.

Shaky temporarily in Hollywood, Florida

John