Hands On Parkinson's

With Madeline on our way to Port Townsend

Introduction

When I started down the Parkinson's disease pathway just a few short years ago I had little knowledge of what was in front of me. I sampled a few things which were outside of conventional medical/drug therapy and quickly gave up on them, either due to a lack of will or lack of desire to commit money to the process.  One of the earliest of these attempts was massage.  In this blog I describe what happened when I sampled massage again several years later with different expectations and a different level of commitment.

Massage

The lights of the massage room had been dimmed to provide a soft and comforting environment.  The feel was completed with new age music playing softly in the background.  The massage therapist knew that I had been here for a massage once prior several years ago and then without explanation did not return. He looked up from his folder, that he had been reviewing since I had entered the room.  He now asked me why I had returned after such a lengthy period.  I shared that I had an extremely sore shoulder that had been with me for several months and that I hoped that just maybe massage might help that.  I added also that I hoped that I might also get some relief from my Parkinson's tremors since things were worse now than just a few years ago.  I find myself having followed the path of taking more drugs than I would really desire and wonder whether massage could least slow that process.  I failed to add another reason that ranked among things that were important, that is that my wife really believes that massage might help and that I had not given it a fair chance.  He said little that I can remember but wrote something down in his notes and closed his folder.  He told me where I could put my clothes, explained how to lay on the massage table and exited the room.  I removed my clothes as instructed and shakily climbed up on the massage table and covered myself with a flannel sheet.  Lying faced down just myself and the new age music in the background I tried to relax and waited for his return.

He did return in a few minutes and noticing my fluttering and tremoring hands went to work on them.  He explained that by stimulating accupuncture pressure points along the way as he massaged the large muscles he might have some impact on nervous outflow which in turn should relieve the tremors.  He continued massaging the major muscle groups while occasionally pressing hard on accupuncture points until it was a little bit uncomfortable but at some point he at least slowed the tremors.  Then he spent extra effort on my sore shoulder, massaging it deeply and rotating the arm itself.  I experienced some discomfort in this but I did not complain.  He ended with my feet and pressed deeply in the arches and pulled them until I could feel a stretching in my back. After nearly an hour he declared the session over and returned after I had dressed.  I told him that I felt well and perhaps even good but silently I had no illusions about lasting relief for either the shoulder or or my tremors.  The tremors had stopped during the course of the massage but were already reappearing like weeds that stubbornly return after being pulled.

I returned at two week intervals for a couple of months and have continued that up to the present time.  At each appointment the massage therapist asks how I have felt in the previous weeks at home.  He makes notes in his folder after my response and begins the massage with some adjustments to what he does.  It took multiple visits to achieve a state of muscular and mental relaxation that was significant enough to have an impact on my sore shoulder and my tremors, but it did come.  As the weeks passed the therapist spent extended time massaging tightened muscles in my chest, back and neck.  The excruciating sore shoulder was now minimally sore. With time and multiple visits I found that I could achieve  the kind of relaxation via massage that not unlike sleep, suspends the tremors completely for short periods of time.  My wife believes that the muscular relaxation has improved my posture as well. I could add that I also believe that it enhances the effectiveness of my medication.  For these things and for even a short period of time when I feel free from tremors, the massage at $60 is worth it.

  Now when each session is finished I feel completely relaxed as I get dressed.  I comfortably walk out to the front desk and write a check for the massage with handwriting that looks as good as that on checks I wrote some years ago.  Some tremor returns by the time I reach the truck but as I ride home I cannot deny that I feel good and the tremors at least for a short period are not significant. 

Shaky

To Chopaka and back again

Moon over Chopaka

ln recent years my brother Bill, and I have made an annual trip to fly fish at a lake called Chopaka.  Chopaka is a remote lake in the north central part of our state perched near the Canadian/US border. I have always enjoyed camping and fishing but this time I found myself wanting to back out as the time approached. Not going anywhere is an option that increasingly enters my mind when there is a choice.  Aging, feeling tired from Parkinson's and the drugs that go with it, may contribute to such feelings.  Thankfully I opted not to take the easier choice and managed to be enthusiastic and garnered the strength to make the trip to Chopaka with my brother.

The drive to and from Chopaka is lengthy and is in the end difficult and hazardous.  The good part is that brother Bill does the driving and I get to ride with a very good driver, enjoy the scenery and the company of one of the people I admire most.  After spending our first night in a motel, we followed highway 97 East and North to the town of Tonasket. From there the final 20 miles to the lake finishes with at least 10 miles of steep, rough and just plain nasty road.  This stretch of the road is in non maintained condition with no covering of gravel and which means it is down to driving on sharp bedrock.  Early on this portion of the road is very steep and to make things more difficult there is an assortment of rocks baseball size and larger that have fallen on the road after rain or livestock or wild life knocks them loose from the rocky and nearly vertical wall that rises on our left.  On the right it is a near vertical drop off with no guard rail.  Thankfully the road soon levels a bit and pine forest complete with grazing cattle filled in around us. The thrill of being in the mountains of the Okanagan country of Washington state has begun to settle in.  the theme from the classic 1956 western movie, "The Big Country" begins to play in my head.  No matter how old I become or whether Parkinson's is trying to take charge of my ambition being among mountains like this will always be a thrill.

Eventually the road forked and after some hesitation we took the left fork and climbed a bit more and from here got our first sight of the lake which now stretched out below us lying among green meadows and open forest of Ponderosa pine. It is always a site so grand that it sweeps away the fatigue of the long and difficult drive.   Bill descended this final stretch carefully with our tent trailer in tow, down to the Chopaka Lake campground. Cool weather and slower than normal fishing meant that there were plenty of sites to choose when we arrived, including our favorite site of previous years in the grass near the shallow end of the lake.  We carefully parked the truck and the tent trailer that was intended to be our mountain home for the next several days. Then we busied ourselves unloading gear and completing a variety of tasks needed to set up camp prior to putting on the fly fishing gear and hitting the water.

I have always enjoyed the birds of Chopaka and quickly spotted some old friends and maybe some new ones hanging about: redwing blackbirds, western tanagers, goldfinches, swallows,  bold and lovely robins and ducks with many babies trailing. I noticed that the June sun carried some heat as I walked rocky path to the pit toilet that would be our amenities for the next several days. Along the way a young and small snake earnestly slithered across my path holding his head high like a determined child and yet his appearance was a bit more sinister that the typical garter or gopher snake. I focused in on his triangular head and later identified him as a member of the Western rattlesnake family.  Still very young, he as yet had no rattles. I thought about the snake but we kept our eyes open and did not see him again, nor any more of his family.

Bill preps the rods

With an afternoon of fishing ahead I put on chest high, breathable and leaky waders. I also had a cap to protect my face from the sun and a pair of polarized sunglasses to protect my eyes. I finished preparations and selected my favorite rod. A rod I had finished myself from a blank made by a company simply known as Sage.  The rod remains a prize possession from years gone by when sans tremor I carefully wrapped and finished it myself.  Bill helped me pick out a fly and tied it on for me since my own ability to tie on flies and threading gear is sometimes both difficult and slow.   I access the lake via a float tube that surrounds me and keeps me above waterline. Nothing fancy but it works. I keep close in and fish for rainbow trout feeding on insects among the weeds.  It seems PD has had some effect on my legs ability to kick and propel.  Strangely my left leg wanted to drag. I stayed close in and got off the water when the wind picked up. That first day the wind increased and churned the water into whitecaps and I was driven off the water early and got no fish.

Among fly fishers there is constant talk of insect hatches and the impact they have on the feeding patterns of the rainbow trout that inhabit the lake.  The kinds of flies that are hatching dictates the pattern of fly chosen to trick the fish into thinking they are chomping on a natural snack.  I like to fish the reedy shoreline for trout feeding on the numerous insects that hatch among them. I make short casts that allow my fly to touch the water gently just in front of the reeds and occasionally is followed a flash of action and a quick tug at the end of my line that race the pulse like nothing else in the world.  On day two my luck turned a bit better and the following two days I got two fish a day.  Thank goodness PD tremors are resting tremors and I can bring fish in and retrieve line pretty good.  I have to be very careful when I hold my rod in my right hand and do not pay attention to the tremors.  That combination can produce some pretty mean snarls of leader, fly and line in an amazingly short period of time.

The nights were chilly, reaching down into the 40's but Bill kept the inside of his tent trailer quite warm. Three of the four days we were  out I slept poorly.  After going to sleep at 10 PM I would wake up before 1 AM and lie in the warmth of my sleeping bag and think about much but PD continues to be a dominant topic. I also wonder why elements of my faith gnaw at me during these nights and continue to raise questions that seemingly have no answers. Answers I do not have and underscore the need for faith. Trips outside were frequent during the night and were both annoying and inspiring.  Annoying in that a sense of urgency drives you out and into the cold of the high mountain night.  The inspiring part was stepping out into a crisp full moonlit night in the mountains with legions of frogs providing a full musical score.  

During the course of of nearly 4 days of fishing we were confronted with an assortment of weather and both the good and bad of insect life.  At times the wind blew up white caps on the water while I sat in my camp chair and sipped a brew.  There were times of 80 degree heat when I smeared on mosquito repellent to keep the pesky blood biters at bay.  There were also the periods of beauty and tranquility on the lake, when the callibaetis hatched and the the trout came up from somewhere in the depths and began to rise for a taste of this most natural snack.  Or the simple pleasure of basking in the sun and stretching out in comfort while again enjoying the taste of an ice cold ale.  I also recognize that if not for my brother and my decision to go in spite of the effort that Parkinson's presents that I would not have these memories.  Memories to savor while I sit at my desk dreaming of colorful rainbow trout and the elusive callibaetis and prepare these notes to share them with others.

Shaky in Coupeville

Good bye Chopaka for another year

That Thing About Drugs

Mount Baker in Spring from Whidbey Island

There is a certain clarity that comes with rising in the small hours of the night. The hours when the silence is broken only by sound of your spouse breathing or the movement of yellow dog Bella as she turns over in a dog's blissful dreams.  I creep out of bed and position myself in the stuffed chair next to Bella. I open my IPAD and begin to think about why I am awake at this time when most people are asleep. 

I am awake because this is one more piece of this puzzle known as Parkinsons. Since the earliest days of PD I have awakened around 1:30 or 2 AM, often unable to return to sleep.  Frequently I wake up in the midst of a stage  of sleep known as REM sleep. REM is that period of sleep when when your eyes move rapidly and dreaming occurs.  In this stage the brain somehow finds rest while it links confusing pieces of information into a story of sorts. These dreams have been especially vivid for me and I sometimes wake up when I am acting out some portion of the dream.

One night I found myself being pursued and desperately trying to escape the pack competitors in a roller derby.  I woke trying to hold back the pursuing pack on roller skates by slugging away with an elbow. Strangely I am neither a fan nor have ever had anything to do with roller derby.  They say that usually the brain has a barrier that wakes us up prior to becoming physically engaged with a dream.  In Parkinson's that barrier has been removed or at least messed with and so I have reached, kicked or slugged as a dream is happening.

  

Another  dream brought back a friend who was once a part of every day nearly forty five years ago. This friend vividly jumped to life in my dream as if 45 years time had never passed.  All was not well in the dream however and there was conflict of some kind between us and we were once again separated. I have few clues to why we were destined to separate both in the dream and in life.  I awoke briefly but I returned to sleep and the dreaming continued.  This time I searched for land to live on in the years of life that I have remaining.  I found myself quietly farming and trimming fruit trees alone.  My wife was gone, no children were present, nor friends. A sense of sadness persisted from the previous dream. I found myself wondering how I would I find friends at this late stage of life and it troubled me.  A fog of gloom  and sadness had spread around me as I woke up.

Our patterns of sleep may modified by Parkinson's itself or by drugs intended for the purpose of inducing sleep.  Changes may also be due to side effects of a drug never intended to influence sleep.  For myself this is likely the case and it began a few months ago when I added a drug called Artane for tremors.  For tremors it was and is helpful.  Without explanation though both the early awakening and the vivid dreams stopped.  I assumed that the better night's sleep was due to the addition of Artane since I knew that Artane could cause drowsiness and thereby assist sleep.  Nice! But I also was puzzled by the disappearance of my vivid dreams or any dreams.  I found among the list of side effects that Artane not only causes drowsiness but also suppresses REM sleep.  REM sleep is quite important to achieving the natural restorative sleep the body needs.  More sleep but lower quality of sleep has been a concern with sleeping pills for a long time.  Now on Artane I sleep longer but seem to be nearly for as tired as when I woke early every day.  There is little doubt that Artane has been very helpful for tremors but hidden among the side effects there is a price to be paid. It would seem that more sleep also means lower quality of sleep.

Shaky in Coupeville

Some gotta win, Some gotta lose

Got my pills to ease the pain,
Can't find a thing to stop the rain
I'd love t'try and settle down,
But everybody's leavin' town

Some gotta win, some gotta lose
Good Time Charlie's got the blues
Good Time Charlie's got the blues
Danny Okeefe

I have come to believe that a significant piece of Parkinson’s is about being tired.  Being tired because I have not slept well or maybe it is the drugs or is it that PD effectively places some kind of drag line on my body. I wake up every morning, take my pills and give the best I have to battle a losing cause.  When I awaken it takes time for the shakes to begin and it also takes a while for the drugs to be absorbed and begin their assigned tasks.  Once that time has passed there are days when I can feel their soothing influence sweep over me.  I put my hand out in front and look at it and then I pick up my coffee cup and say for the umpteenth time, “look, no shakes”. With the good unfortunately there is usually a wave of not so good. On those days a fog of tiredness accompanies the relief from tremors and makes me want to return to bed.  There are other mornings when lightheadedness demands my return to bed until it passes.  Once in bed it is a great feeling to stretch out and remove every bit of excess strain and to feel released from PD if even for a short while. 


As the day progresses there are windows of time when the drugs can be remarkably effective and I find myself wondering why all the fuss?  So why have I quit driving?  I look beside my desk and am soothed by the sight of my sleeping yellow dog at my feet.  She rests in complete peace, she lives for the day to day and never questions God’s justice.  Upstairs is my peacefully sleeping wife who also does not question the perfection of God’s justice either.  Their love, His love, for me has never wavered and I feel humbled and selfish when I think of them.  I also feel very tired and desire the rest that only sleep can give and at times PD can make very hard to get.

Shakey in Coupeville

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