Fly Fishing for Parkinson's

Moonrise over Walupt Lake

It is apparent from the large amount of press generated that exercise has been a major focus of study within the Parkinson’s scientific community recently.  The results of many of the studies conducted have been positive and have shown up in the literature and media over the past several years.  It now seems reasonable to ask how important is exercise in the scheme of modern PD treatment?

When I recently typed Parkinson's and exercise into the Medscape search engine an impressive list of studies and "scholarly articles" popped up.  I scanned the list on my computer screen and virtually everyone of them claimed some sort of positive finding when a consistent exercise regimen is applied to patients with Parkinson's.  In view of this large array of positive results it seems that exercise should hold a prominent place in the treatment scheme of many if not all of us who have this disease.  Secondly there appears to be some form of exercise for everyone with PD.  You can think of nearly any form of exercise and a benefit for PD has probably been found. I will name a few picked out of the articles I pulled up: weight training(resistance), stationary bicycle, treadmill, Tai Chi, dancing, walking and there is probably a lot more. 

In search of the Cispus Cutthroat

It was however a bit of a disappointment that A favorite active pastime and healthy exercise of mine did not appear.   So I thought: what about fly fishing?  What if I get busy and organize a study comparing PD patients who fly fish with those who do not?  In light of the other studies that have been conducted I think it very likely that it would be beneficial to PD patients.  I could become famous and publish an article called Fly Fishing for Parkinson’s.  I might even get a call from Michael J Fox himself inquiring about fly fishing lessons. After all it isn't much of a stretch. Fly fishing is kind of a souped up Tai Chi.  Wading the stream would improve balance and leg strength.  Casting is fine resistance training and being intently aware of conditions and insect hatches couldn’t help but improve cognitive(thinking) problems.  Truly a can't miss for elevating the mood.  It has not hurt me!  It does help to have a helpful brother who ties my flies on when my shaky hands just aren't up to the job.

So go ahead and review the list of published articles I have included and then check with your doctor.  Are you physically able to start a routine that incorporates some form of exercise?  If you are physically able to do so the literature clearly suggests that you will benefit.  I have found that a recumbent exercise bike parked in front of the TV makes exercise very easy and safe to do.  I can then add a leisurely walk with my dog and yes an occasional fly fishing trip.

Shaky in Coupeville

The fountain of youth found

Randomized Clinical Trial of 3 Types of Physical Exercise for Patients With Parkinson Disease
Exercise can improve gait speed, muscle strength, and fitness for patients with Parkinson disease. The combination of treadmill and resistance exercises may result in greater benefit and requires further investigation.
JAMA Neurol. 2013;70(2):183-190. doi:10.1001/jamaneurol.2013.646.

Tai Chi Improves Balance, Reduces Falls in Parkinson's
N Engl J Med. 2012;366:511-519

Resistance Training Reduces Signs of Parkinson's
A vigorous resistance training program not only makes patients with Parkinson's disease (PD) stronger but also reduces signs of their disease over the long term, a new study has found.
American Academy of Neurology 64th Annual Meeting. Abstract #S02.003. Presented April 23, 2012.

Fast Pedaling Benefits People With Parkinson's Disease
People with Parkinson's disease benefit from pedaling on stationary bicycles, and those who pedal faster derive the most benefit.
News, Medscape Medical News, November 2012

Dance Therapy for Parkinson's Disease Dancing to a Better UPDRS
Can people with Parkinson's disease really waltz their symptoms away? Two recent studies suggest that dance therapy improves balance, bradykinesia, gait, motor functioning, postural instability, quality of life and other functional measures.
Medscape, Wilner on Neurology Blog, January 2012

Exercise, Behavioral Therapy Ease Incontinence in PD
Behavioral therapy using pelvic floor muscle exercises may help prevent urgency urinary incontinence episodes in older patients with Parkinson's disease.
News, Medscape Medical News, May 2011

It Is Not About the Bike, It Is About the Pedaling
Forced exercise intervention may improve motor function and central nervous system function in patients with Parkinson's disease.
Journal Article, Exerc Sport Sci Rev, October 2011

MDS 2009: Forced Exercise Provides Benefit Similar to Levodopa in Parkinson's Disease
June 15, 2009 (Paris, France) — Patients with Parkinson’s disease (PD) who exercise on a stationary tandem bicycle with a healthy partner during a single 40-minute session experience a 35% improvement in motor function and increased brain activation similar to that found with levodopa treatment, new research shows.

• Movement Disorder Society's 13th International Congress of Parkinson's Disease and Movement Disorders: Abstract LB-13. Presented June 10, 2009.

Shaky days

Today has been a difficult day.  The tremors are raging in both arms in spite of a second dose of carbidopa/levodopa. Earlier I went fishing for salmon along the Whidbey shoreline just a short drive from home.  I thought it might be the thing to relax and settle my body down. So Carolyn drove me. She intended to catch up on some reading while I stood on the beach and cast and retrieved for salmon.  The rhythm of fishing brought no relief and little satisfaction.  The worse than usual pounding away of the tremor persisted while I retrieved my line.  Oh well the water was too weedy anyway.  It was really no surprise since fishing really does not settle my tremors. I do get some mental rest by way of being there.

I also believe  that my inability to get a decent night’s sleep is and has been a factor on days like this and that there is a real sleep deficit that is catching up with me. Sleep deficit equals worse tremors.  Clonazepam is often prescribed for early awakening with Parkinson’s and it was offered on my last neurology visit after I described my difficulty.  I refused it.  Now I am second guessing myself.  At the time I declined knowing that it is a close relative of Valium or diazepam and that it is extremely long acting.  Which means that when you take it at bedtime you then have it both night and day.  I think I have enough drugs hammering away at my brains and one more may just be more than enough.  Sleeping preparations of any variety may be habit forming and generally for that reason are usually not taken continuously.  They are also known to lose their effectiveness if taken daily.  And yet clonazepam is its own substance and I would be glad to hear from any of you who have experience with it.

Rest is certainly considered important in Parkinson’s and for that reason naps are said to a good thing.  Hey, I am only 64 and a nap does not want to fit.  But then again if it helps?

I think I’ll lay down for a while. 

Shaky John

Personal Parkinson's

I was diagnosed with Parkinson's disease two years ago and during those short two years Parkinson's has become a dominant feature of both my physical and mental life.  It threatens to define who I am and ignores that I had previously lived without it for many years.  The disease itself is relentless and it attacks your existence with a slow but steady progression of infirmity.

In my working life I was a pharmacist for more than thirty years and in those years I dispensed many prescriptions for Parkinson's patients and the Parkinson look was very familiar to me.  I would never picture myself with Parkinson's and yet in recent years when I saw myself in the mirror there was something strange about the the way I carried myself.  My proud tall stature and thrown back shoulders had been replaced by a man who did not throw his shoulders back and had a stooped posture.   My wife did not like this and would frequently remind me to stand up and throw my shoulders back.

Being a pharmacist I also knew something about the pathology of the disease and the pharmacology of its treatment. In the 1990's I had evaluated the drug therapy of many Parkinson's patients when I worked as a long term care consultant pharmacist.  In that role I was always looking for drug interactions that might be making things worse for my patients.  A favorite book of mine at the time was Oliver Sacks Awakenings.  An account of early drug treatment with dopamine of a Parkinson's related disorder acquired by way of a flu outbreak in the early 20th century.  I knew about the disease but I was not looking for myself to have it.

Early Spring 2010 I had began to notice a stiffness and a twitching or trembling tremor in my left hand.  These symptoms appeared mostly when I walked rapidly or ran. With time my entire left arm stopped its natural swinging movement when I walked.  Mild stress also activated tremors that looked kind of strange and made people who were close to me uneasy.   At times my hand shook while my thumb and forefinger twitched as if rolling pills.  It did not take long for these bothersome movements to spread from my left hand side to my right hand side. The tremors on my right side have gradually become even worse than those on the left side.

I had concerns and my wife had concerns as well so I made an appointment and sought the help of my doctor. The stress of a doctor visit activated the tremors for him and he was impressed and promptly set me up to see an excellent neurologist, Dr Gierke.  Dr. Gierke evaluated me and at the times the symptoms were vague enough that he could not determine for certain what was going on.  He did say that "you have my permission to say you have a nasty tremor." A year passed watching symptoms that did not provide definitive clinical clarity to accurately call my condition Parkinson's or something else.  Dr. Gierke decided to take things a step further.  He ordered an MRI to rule out lesions or tumors.  It turned up nothing.  He decided that a second opinion might be helpful and sent me to the University of Washington Movement Disorder Clinic.  There I saw a specialist in movement disorders, Dr. Sammi.  A bright, obviously energetic award winning neurologist.  Similar to Dr. Gierke he examined me by watching my responses to a battery of specific neurologic tests.  This included such things as moving my fingers from out stretched arms to end of nose, rapidly opening and closing thumb and forefinger, tapping the floor with my feet, watching me walk and more.  After we finished he adjusted the glasses on his face and then without hesitation went on to explain why he believed that without a doubt I had Parkinson's. As with others who have lived with the medical uncertainty that precedes a Parkinson's diagnosis I was kind of relieved to finally know what I was dealing with.

I already knew that Parkinson's is a progressive, degenerative brain disease caused by the diminishing ability of certain cells deep within the brain to produce a vital ingredient for transmission of nerve impulses: dopamine. In other words it is as if an unidentified microscopic terrorist has invaded the brain's dopamine factory and blew it up. In this case instead of stopping the flow of oil it is the flow of dopamine that has been derailed.  In its absence all hell breaks loose.  Like other Parkinson's patients this process of diminishing dopamine likely started may years prior to any suspicions on my part and explains some issues experienced in my work as a pharmacist and others such as driving, slow response to stimuli and weight loss to name a few. In fact nearly 60-80 per cent of normal dopamine stores are depleted at the time of diagnosis.  The disease is officially incurable at this time.  It progresses slowly and manifests itself differently in every patient who suffers with it. 

It is now two years later and I think I am living pretty well with Parkinson's. My symptoms are well controlled by several drugs that have been prescribed to cover a multitude of annoying but bearable symptoms. Two of the drugs prescribed, work by either stimulating the brain receptors that are lacking dopamine or by adding dopamine that my brain has quit producing.  Their dosages have been slowly moved up over a period of many months and further adjustment will be needed as dopamine depletion and the disease progresses.  For me these two drugs (ropinarol and carbidopa/levodopa) are fir the present working well.  They have helped not only the tremors but also other annoying symptoms such as a diminished ability to perform basic functions like button your shirt buttons.

There is however another nasty catch to Parkinson's.  It has a variety of other symptoms that extend beyond its primary target of movement controlled by the central nervous system.  In my case so far this has meant a couple of toughies: toilet plugging constipation and urine incontinence or oops, the on and off switch for my urinary tract seems broken.  A trip to the urology department at the VA for these problems was very helpful.  They added a laxative and a stool softener that have done a nice job of persuading my bowels to not sleep on the job and for the other tough to mention problem they added two drugs targeted at two separate pieces of the urinary puzzle.  Dicyclomine was added to block the bladder spasms thought to be a part of Parkinson's. Tamsulosin was prescribed to open the urine pathway being narrowed by an aging prostate.  Thankfully these two drugs have dramatically turned around the problems with the urinary system.

So here I sit pecking away at my trusty computer living with Parkinson's and looking forward to a full and productive finish to my life.  Thank God for my wife and partner who will walk by my side in this process.

As for this, I am looking forward to sharing what I learn about this disease with those of you whom I hope will be my readers.  For now on this particular night I am very tired due to a long day and a persistent sleep problem that wakes me most mornings anywhere from midnight to 4:30.  Yes, Parkinson's causes that as well.

Welcome to Parkinson's

Shaky in Coupeville