Thursday, December 29, 2011

The Rest of the Story

In my "Living in the Moment" article, I mention the desirability of staying in the present and not focusing on fears or concerns for the future.  In my book, I talk about having shared with Carson what could be described as "enough but not too much" information.  I have not written specifically about what the future is likely to hold for me and others with Parkinson's.  Since part of what I hope to accomplish with these blogs is to create a greater understanding of the disease, I am going to step "out of the moment" long enough to provide information that is not common knowledge.

Before doing this, I would like to share that I have had the opportunity and privilege for the past two months to speak, usually as part of a program that includes medical presentations by neurologists and, on some occasions, neurosurgeons, to interested members of the public and support groups about my Parkinson's (PD), essential tremor (ET), and deep brain stimulation therapy (DBS) journey.  The doctors provide factual information related to these subjects while I focus mainly on practical and experiential information from a patient's perspective.  I was asked to take on this role by Medtronic, a major DBS technology and support services company, in order to increase awareness and understanding of PD, ET, and therapy options, including DBS.  With their help, I have made presentations in the Denver area at Colorado Springs, Boulder, University of Colorado Medical School, and the Highlands Ranch library, and have programs scheduled at the Muhammad Ali Parkinson's Center in Phoenix, Longmont, and Loveland.  It is clear that patients value both the factual input from doctors as well as the first-hand information shared by fellow patients who have "been there and done that".  I share Medtronic's goal to help patients understand the facts as well as the potential impact on their quality of life relative to DBS so that they can decide, with the help of their doctor, if it is right for them.  It certainly has made a big difference in my life.

On that note, we are very fortunate in the Denver area to have the nation's only (with the exception of a recent spin-off group in Grand Junction, CO) DBS support group (called the Bionic Brigade) which was founded about five years ago by Valerie Graham and Kate Kelsall (both have PD and have had DBS).  I started attending meetings, as mentioned in my article on DBS, months before committing to DBS and found the input from fellow patients who had been through DBS to be very helpful.

In my experience, the general public has limited awareness of what Parkinson's entails, unless they have been touched by it through a family member or friend.  It is important to know that PD affects different patients in different ways (not everyone experiences the same symptoms) and is known as the "designer disease" as a result.  There is often some knowledge regarding the motor symptoms of PD, like tremor.  Most do not know the difference between essential tremor (action tremor experienced when doing something with hands) and Parkinson's tremor (resting tremor).  I speak to the differences and challenges of essential tremor (ET) in my blog with that title.  There is generally less awareness of the other typical PD motor symptoms including stiffness/rigidity, slowness of movement (bradykinesia), walking and balance problems (including "freezing).  Very few have heard of problems related to very small handwriting (micrographia).

Almost no one I meet, including many patients, is aware of the multitude of non-motor symptoms that are associated with PD.  These problems, which are not readily apparent like motor symptoms, are often the most debilitating and include mild cognitive impairment/dementia (almost all normal-age onset patients experience cognitive slowing or bradyphrenia), chronic sleepiness/fatigue, depression, anxiety, sleep disorders, autonomic nervous system, speech,  concentration/attention/multi-tasking, sense of smell, vision, skin changes, gastrointestinal issues and more. For an excellent review of these issues visit the Parkinson Disease Foundation (PDF) website at

Wednesday, December 14, 2011


The listing of resources for information on Essential Tremor and Parkinson's including symptoms, treatment, and support groups as well as deep brain stimulation is included in my book.  I have decided to share it here so that it will be available to as many people as possible.  I would like to ask my readers to consider donating to any of the organizations (with an *) below, perhaps in the name of a friend or relative who is or has been afflicted by one of these diseases.  I hope you will agree that this would be a wonderful Christmas gift.

1. Michael J. Fox Foundation* (
2. National Parkinson Foundation* (
3. Muhammad Ali Parkinson Center Movement Disorder Clinic*
4. American Parkinson’s Disease Association* (
6. National Young Onset Center* (
8. International Essential Tremor Foundation* (
9. Davis Phinney Foundation* (
10. Parkinson Association of the Rockies* (
11. List of Parkinsons organizations worldwide: (
12. To get contact information for Parkinson’s organizations and support groups in your area go to: and
13. For a referral to a movement disorder specialist in your area, contact the Movement Disorder Society in Milwaukee, Wisconsin, at 414-276-2145.

For information on Carson And His Shaky Paws Grampa or to place an order visit

Tuesday, December 6, 2011

Living In The Moment

The theme my church is using for the holiday season this year is "Christmas Present: Living In The Moment".  I have been thinking about this and how it applies to my life (which I am sure is what my church would have hoped for with all its' members).

The obvious double entendre here is that we all enjoy giving and receiving Christmas presents.  In this case, we all have the opportunity to both give and receive a wonderful gift  by making a conscious effort to "be present" for our families this Christmas and "live in the moment".  But first, we have to understand what this really means.

Living in the moment involves blocking out concerns, hopes, or fears related to events which have already occurred or that may happen in the future.  We can't change what has already happened, so why not (as Pumba so aptly suggests in The Lion King) "put our behind in the past".  We don't have to buy into the Hakuna Matata philosophy to do this.  It is unlikely that we will have "no worries for the rest of our days".  However, we have the option to not let real or imagined concerns about the future take the joy out of living today.

At the risk of sounding like I am "talking out of both sides of my mouth", for me this doesn't mean not taking steps to mitigate future problems.  In this respect, if we don't spend some time with our eyes on the horizon, we may miss opportunities to change the future in positive ways.  For me, the distinction is not letting these thoughts and activities OWN me.  I am not saying this is easy, but I am convinced that I owe it to my family and myself to make this a priority.  In fact, I will admit that right now I am not very good at it. 

In hindsight, I have not been good at this for a long time.  It is a skill that I (like many of us) think I lost somewhere between the innocence of childhood and the (in many cases) self-imposed challenges of adulthood.  Today, with the uncertainty of a future clouded by Parkinson's, the stakes have become higher.  I know if I spend too much time worrying about what could or might happen as the disease progresses, I run the risk of making my health worse today.

Which brings me back to the "Christmas Present" theme.  What better time could there be to commit to living in the moment?  With the magic of Christmas is in the air, why not focus on Christmas trees, decorating our homes inside and out, gatherings with friends, and memorable moments with family rather than concerns for the future?  I believe that I have the opportunity to make this holiday season, as well as the time that lies beyond, more pleasant and memorable for my family and me.  

This is starting to sound like "A Christmas Carol", and why not?  I find myself too often short-tempered and irritable with those who matter most to me.  I am told that this is a symptom of the disease for many, but I have to believe that I can change (or at least improve) if I put my mind to it and "keep Christmas in my heart".

For me, living in the moment is made much easier when I am focused on my faith.  I would not be writing this if I didn't have a tendency to revert to "self-reliance" and worrying about the future.  However, at the end of the day, I am secure and content in the belief that God will watch over my family and me and help us to deal with whatever life throws at us.   I hope that each of you will enjoy a wonderful holiday season that brings joy, hope, and renewal to you and your families.

Wednesday, October 12, 2011

Carson & His Shaky Paws Grampa Press Release


Summary / Description: Innovo Publishing LLC released Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws Grampa series. Shaky Paws is a story about the relationship and love between a seven-year-old boy and his grandfather who has Parkinson’s disease and essential tremor. This book is available now in the U.S. and internationally in hardback, paperback, Apple iBook, Amazon Kindle, Barnes and Noble Nook, and Google Android editions.
Memphis, TN – October 12, 2011 –

Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is designed to help parents and grandparents comfortably talk about the initial symptoms of PD and ET and address common questions and concerns children may express. This loving story blends well with Paolini’s charming watercolor illustrations and is written with words simple enough for a child to understand. Based on the author’s personal experience with Parkinson’s and ET, Hall’s approach to this important topic is gentle and effective in reducing concerns with children and younger family members and friends.

Carson and His Shaky Paws Grampa not only deals with symptoms of PD and ET, but it touches on an innovative and effective treatment the author successfully underwent called deep brain stimulation (DBS). DBS has resulted in a remarkable quality of life improvement for the author, which he writes about in his book. Carson and His Shaky Paws Grampa is the first book in the planned Shaky Paws Grampa series and will be followed by additional titles that gently explore the more advanced stages of PD.

Hall will be showcasing and signing his book at the 6th Annual Parkinson’s Disease Conference in Atlanta, Georgia. The conference begins October 14 and ends on October 16. A portion of the proceeds from the sale of this book will be donated to support Parkinson’s and essential tremor research and awareness.

Carson and His Shaky Paws Grampa has been enthusiastically endorsed and supported by a number of Parkinson’s and essential tremor research and philanthropic organizations including the following:

“Wonderful story. So warm, thoughtful, and heartfelt. Loved it! A must-read for anyone with ET or PD.”
—Catherine S. Rice, Executive Director, International Essential Tremor Foundation

“. . . a charming story that provides helpful guidance to PD patients for answering their grandchildren’s innocent questions.”
Margaret Anne Coles, Program Manager
Muhammad Ali Parkinson Center/Barrow Neurological Institute

“. . . a fabulous book with remarkable illustrations.”
Cheryl Siefert, Executive Director, Parkinson Association of the Rockies

“Great story that touches on DBS surgery and its dramatic positive effects.”
Ben Petrick, former Rockies/Tigers baseball player
Parkinson’s patient who has had DBS surgery

“. . . demystifies Parkinson’s for the youngsters in your family.”
Joel Havemann, retired Los Angeles Times editor,
author of A Life Shaken: My Encounter with Parkinson’s Disease

About the Author

 Kirk Hall lives in Colorado with his wife of 42 years, Linda. Their two sons and
their families live nearby. He was diagnosed with ET in 1991 and PD in 2008 and had successful DBS surgery for tremor stemming from both conditions in 2011. Kirk has participated in a variety of clinical research studies at the University of Colorado hospital and the National Institutes of Health in Bethesda. Kirk and Linda are active members in the Parkinson’s Association of the Rockies. He is also a member of TeamFox. Their active lifestyle includes skiing, camping, hiking, golf, tennis, workouts at the local recreation center, bike riding, babysitting, watching grandkids play sports, and more. They are also involved in the life of their church where Kirk is a member of the choir. He recently tried ziplining in Costa Rica and loved it!

About the Illustrator

Alison Paolini lives in Northern California where she enjoys a multitude of
creative activities. She studied acting and set design in New York and fine art with illustration at California State University at Northridge. She also taught “Drawing On Your Imagination” for eight years at The Paradise Art Center and shows her work at local art galleries. Alison is a published illustrator and poet. She is an active member of the Parkinson’s Association of Northern California.  She and her husband have two children and three grandchildren. They have enjoyed living in and visiting many parts of the world. Alison was diagnosed with Parkinson’s in 1999 and believes firmly that staying creatively active is crucial in coping with the disease.
About Innovo Publishing, LLC

Innovo Publishing is a full-service Christian publisher serving the Christian and wholesome markets. Innovo creates, distributes, and markets quality hardback and paperback books, eBooks (Kindle, Nook, iPhone, iPad, ePub, Android), audiobooks (CD & MP3), music, and film/videos through traditional publishing, cooperative publishing, and independent
publishing models. Innovo provides distribution, marketing, and automated order fulfillment through a network of thousands of physical and online wholesalers, retailers, bookstores, music stores, schools, and libraries worldwide including Amazon, Audible, iTunes, Rhapsody, Barnes & Noble and many more. Innovo publishes Christian fiction and non-fiction books for all publishing genres. Visit Innovo at

Contact Information:
Dr. Bart Dahmer
Innovo Publishing LLC
Phone: 1-888-546-2111
Web Site:

Thursday, September 29, 2011

Grampa Music

When you tell most people you have a CD you have recorded with karaoke music, the reaction usually involves horror, ridicule, or both.  That is unless the "people" are children.  I had been told prior to deep brain stimulation (DBS) surgery that my voice might be affected.  Since singing has been a passion in my life for many years, I was concerned.  Not enough to pass on the surgery since the goal was to minimize tremor in my hands and head that had plagued me for 20 years.  Instead, I bought a used karaoke on Craigs List and selected karaoke backup music for songs that appealed to me, found the lyrics online and began recording.  The music included 50's & 60's oldies, movie theme songs, love songs (favorites of my wife) and even a little country/western.  All of it had some special meaning to me.

I had selected a karaoke machine that allowed me to change key, which opened up a wider range of possiblilites for recording.  Since my hands were shaky, I put the mike in a pencil holder at the appropriate level and began to experiment.  My voice was already weaker and somewhat scratchy due to the effects of PD.  I did my best to work around that by adjusting the volume and drinking water.  If this was going to be my last shot, I wanted it to sound as good as possible.

I had enjoyed singing when I was in high school and was a member of the school choir and ensemble.  My junior year I auditioned for the county "select choir" and was chosen.  I think I was still a first tenor at that time.  My senior year we moved and my new school did not have a strong music program, so I didn't sing that year.  In fact, I was 33 years old when I felt the urge to sing again.  We had moved to a small town in Oakland, NJ and I wanted to find a church that had a choir.  We found a wonderful church with a small choir and I enjoyed that for twelve years until we moved to Colorado.  There we found another small church in Monument, CO that had a choir.  I was encouraged by the folks in the music program to try singing solos.  I wasn't too keen on the idea as I didn't think I would do well under pressure.  After the first few times, I realized I wasn't going to die of fright and actually sounded pretty good most of the time.  With a lot of encouragement from my friends at church and my family, I expanded my horizons.

During the 90's, I sang with the Colorado Springs Symphony chorus for a holocaust memorial program and, later, three performances (including one at Vail attended by Gerry & Betty Ford) of Carmina Burana.  In 1998 I was honored and surprised when my son and future daughter-in-law asked me to sing at their wedding.  Later that year, a new musical organization formed in the Monument area by my friend and neighbor, Bob Manning, called the Tri-Lakes Music Association (TLMA).  I was asked to audition for a solo part in an arrangement of O Holy Night and was chosen.  This meant singing with a full orchestra in front of about 500 people.  Once again, I found out that I could do this (as long I had a mike stand-I couldn't hold a mike due to my shakiness under any circumstances let alone in front of that many people!).  Once again, I was honored to sing at my younger son's wedding in 2000.  I also sang at funerals and a wedding or two when asked by members of my church.

We changed churches while still in Monument around 2003.  Many of the choir members were friends from the TLMA Christmas concerts (where I sang solos  until we moved to the Denver area).  Once again, I had many opportunites to do solo work at this church.  One of our choir members had a fabulous bass/tenor voice (way out of my league) and had sung with the Metropolitan Opera.  He was very complementary regarding my singing and one day surprised me by saying that my voice reminded him of Jerry Vale (you would have to be closer to my age to remember him).  We have joined a new church in the Denver area where I still sing in the choir.  They have a fabulous music program there due to the credentials of their leader who has a Ph.D. in music from the University of Colorado and was formerly leader of the San Francisco Symphony Chorus.  My voice is no longer strong enough for solo work.

Meanwhile, back at the karoke, I recorded about 20 songs and had bought music for about another 10 or so (which I never got around to).  I did sing my favorite Christmas solo (O Holy Night) for our community program last December and am glad to say I did a pretty good job.  I did not sing in the months leading up to my DBS surgery in March/April of this year.  I have rejoined the church and community choirs and am working to keep my voice respectable with no great expectations.

These days we often have one or more of our six grandchildren in the car with us transporting them to sports activities or taking them home with us for an overnight.  They almost always ask to hear what is now known as "Grampa music"-my karoke CD.  They have no idea how happy this makes me.

Monday, September 19, 2011

Deep Brain Stimulation

During the latter part of 2009, I decided to pursue an appointment at one of the top neurological hospitals in the U.S.  I was not dissatisfied with the University of Colorado Hospital (UCH), but thought it was a good idea to pursue another expert opinion.  I had a number of options where friends or family lived in the vicinity of the target hospital.  Barrow Neurolgical Institute (also home to the Muhammad Ali Parkinson Clinic) in Phoenix offered to make an appointment with me and I accepted (I have friends who live in Sun City West which is in the area).  I was happy to learn that I would be meeting with Dr. Abraham Lieberman, an internationally recognized PD expert, former Medical Director at the National Parkinson Foundation (NPF), and Director of both Barrows and the Ali Clinic.

I met with Dr. Lieberman during November of 2009.  During his in-depth examination, he commented that I would be an excellent candidate for deep brain stimulation (DBS) surgery.  He mentioned that DBS was highly successful in addressing tremor which was clearly my most troublesome motor symptom.  He recommended trying some different medications to see if there might be a non-surgical solution.  He also told me that he had met the team at UCH and that he felt they were an excellent choice if I decided to pursue DBS surgery.

When I returned to Denver, I spoke to my movement disorder specialist, Dr. Benzi Kluger, about my visit at Barrow.  He agreed that I would be a good DBS candidate if a medication could not be found that solved the problem (he knew my case well enough that he did not think this was likely).  After trying a number of medications that didn't help, I made an appointment for a DBS evaluation.

The first step in the evaluation was a neuropsychological exam which I took in December 2009.  This involves a series of mental exercises and a motor function test and takes a few hours to complete.  The tests are actually quite interesting and end up providing a snapshot of the current functioning of many parts of your brain.  As I understand it, they do not do DBS in cases where there is evidence of dementia.  I was approved based on this test from a neuropsychological standpoint.

The next step in the process, which took place in April 2010 was an in-depth PD exam by a movement disorder specialist while taking sinemet.  The next day I was examined after having been off sinemet overnight.   Unified Parkinson Disease Rating Scale (UPDRS) scores are compared both on and off sinemet.  If functioning is not significantly worse off sinemet, approval is not likely.  I was also evaluated by a voice specialist to determine if I was likely to need voice therapy.  Finally, I met with the neurosurgeon, Dr. Steven Ojemann, who made sure that I was aware of the risks and benefits associated with DBS.  After some discussion, we agreed that the logical "target" for my DBS would be the thalamus which he described as the best target for tremor (the target for general PD symptoms is usually the subthalamic nucleus).  About a week later, I was told that I had been approved.  I could have scheduled the surgery at that time, but had to wait for insurance reasons.  Needless to say, insurance coverage was an important aspect of this decision.  We set a tentative surgery date for March 2011.

In hindsight, it was good that we waited because it gave us a chance to do our homework and get additional feedback.  For example, in July 2010 my wife and I traveled to Bethesda, MD to participate in a National Institute of Health/National Institute of Neurolgical Disease & Stroke (NIH/NINDS) clinical research program for development of a PD patient database.  While there I learned a good deal more about the disease and some things specific to me that I did not know (like my sense of smell was significantly dimininished).  I also took the opportunity to ask about DBS and whether there was something else on the horizon research-wise that I should wait for.  They spoke highly of UCH, agreed with the thalamus target based on their exam, and told me that DBS was my best option for the forseeable future.  This added to our confidence that we were on the right track.

Another benefit of waiting was that we started attending a DBS support group in our area (the Bionic Brigade) organized by two wonderful ladies who have both had DBS, Kate Kelsall and Valerie Graham.  This gave us the opportunity to learn more about DBS surgery and life after DBS directly from patients.  The bottom line is that, for PD patients, there is a window of opportunity for most when they can take advantage of procedures that will improve their quality of life.  That window is finite.  While I didn't hear anyone say that DBS is perfect, I also did not hear anyone say that they would not do it over again.  My wife and I were armed with enough information to decide to take the plunge.

March 2011 finally arrived.  I was to have three surgeries; the first two would involve implantation of the leads in both sides of my brain into the thalamus.  Extensions would be connected to the leads and be placed under my scalp where they would later be connected to the neurostimulator which would be implanted in my upper left chest (the third surgery).

I was given antibiotic ointment that was applied with a Q-tip in the nose for a week prior to surgery as well as a special shampoo for my hair.  This was to minimize the risk of one the most common DBS issues which is infecton.  Catscans were taken before and after each of the first two surgeries.  The first helped determine the "trajectory" for implantation of the lead.  The second was to ensure that the placement was correct and that there were no apparent problems.  The first two surgeries were inpatient and included an overnight stay in the neurology ICU where I would be observed and helped with any problems.  One of the least pleasant memories of the surgery was the placement of the "halo" that would stabilize my head during surgery.  A local anesthetic was used to minimize discomfort, but the pressure from the halo was uncomfortable.  The halo was rendered immobile with four screws that were attached to my skull (there was no pain with this, but the idea was gruesome).  Without this device, DBS would not be possible as it holds the head completely still during surgery.  I was sedated for surgery, but it had been explained to me that I would be conscious for part of the surgery in order to give feedback that would help ensure proper placement of the leads.

The primary players in the operating room were the neurosurgeon (Dr. Ojemann), the movement disorder specialist (Dr. Klepitskaya), and the Medtronic rep (Nicole Garcetti).  I was aware that all three were involved in the discussions and decision-making, though the neurosurgeon made the final call when necessary.  For each of these first two surgeries, Dr. Klepitskaya had me write my name, draw a straight line, and draw a circular pattern both before and during surgery.  It was amazing to see how steady I was in the OR compared to my preliminary drawings,  When Dr. Klepitskaya took the "before and afters" out to the waiting room to show my wife, she was astounded.  I was also asked whether I felt anything unusual, like numbness or tingling, when adjustments were made to the lead placement.  There was no pain associated with this (the brain does not feel pain).  I was not awake at the beginning of the operation, so thankfully missed the drilling of the holes in my skull.

The first two surgeries were a week apart.  The third, which was an outpatient procedure for implantation of the neurostimulator (about the size of a small cell phone), was two weeks later.  I was under general anesthesia for this one.  The extensions run from the leads to a point in the back of the head (under the scalp) where they are connected and a single extension runs behind my left ear down my neck and across my collarbone where it connects to the neurostimulator. 

The neurostimulator is not "turned on" for about two weeks following the last surgery to allow initial healing to take place.  At that time, I had my first "programming" session with Dr. Julie Berk, who adjusts the settings of the neurostimulator to provide the maximum benefit with the least side effects.  In my case, if the settings are too strong, it affects my face and jaw muscles and makes it difficult to speak clearly.  Over the course of four visits, we were able to fine tune the settings.  I was pleased that my "programmer" (rather like a remote control) has four programs within which I can adjust the stimulation level up or down on both sides of my brain.

Now it is September and the memory of these surgeries is fading, but the benefit is not.  I would always urge anyone considering DBS surgery to ask a lot of questions.  At the end of the day, it is up to you to decide whether DBS is right for you.  My feeling was that I wanted to take advantage of a procedure that would improve my quality of life if the benefits outweighed the risks.  I am glad that I had DBS and would do it again.

For more information on DBS, visit the Medronic patient information site ( or the Parkinson Alliance DBS site (

Friday, September 9, 2011

9/11 Memorial Poem

I would like to share a poem written by the illustrator of my book, which I think is very moving:


Oh walls, in memory
Rise ye up to the stars.
Reflect the moon upon the future,
Bringing loving thoughts of reflections past.
Remember those who were lost that day,
Not in a miserable maudlin way,
But with love and pride and hope to say
You remain in our hearts,
In our souls, in our thoughts.
You remind us to stay alert
Praise these memorials as they
Rise from the dirt,
The earth that is home of the
Free and the brave.
Our wondrous America  
Waits to be saved.

Wednesday, August 31, 2011

Information Regarding Essential Tremor

As I reported in my first blog, I was diagnosed with Essential Tremor (ET) in 1991 long before my PD diagnosis in 2008.  This "evolution" from ET to PD is not typical, but it does happen in some cases.  Essential in this case means unexplained.  Another common name for this affliction is Familial Tremor because it is usually passed on genetically from another family member.  In my case, my mom is 90 years old and has had debilitating ET for the last 10 years.  It normally starts out as a mild condition that is more of a nuisance than anything else.  It does not evolve at the same rate for everyone.  My case was complicated by the fact that I have had tremor attributable to both ET and PD for some time.  In hindsight, I think the PD started to show itself (in addition to the ET) around 2005 especially under stress.  It is difficult to diffentiate the impact of the two conditions (my deep brain stimulaton neurosurgeon could not "quatify" how much of my tremor was caused by PD vs. ET).

ET tremor is typically described as an "action tremor" that occurs most often when using your hands to write, eat, shave, etc.  However, there is also a tremor of the head/neck (axial tremor), legs, and voice that can be a symptom of ET.  Medications used to control ET include propanalol and primidone.   The tremor is usually worse on one side.  Probably the most well-known person with ET was Katherine Hepburn.

PD tremor is typically described as a "resting tremor".  The symptoms are an unexplained twitching or unwanted movement in an arm, leg, hand, finger, etc. that is at rest.  Of course, PD has a host of other symptoms that vary from person to person.  This tremor is caused by the disease and is not the same as the "dyskinesia" symptoms caused by too much levodopa.  Well known persons with this disease include Michael J. Fox, Muhammad Ali, and Janet Reno.

The good news is that both types of tremor that can't be controlled effectively with medication can usually be minimized or eliminated by undergoing deep brain stimulation (DBS) surgery.  It is extremely important to work with a movement disorder specialist (not all neurologists have these credentials).  DBS, including both its' risks and benefits, is something you can discuss with your specialist to see if it is a good alternative for you to explore.

A great resource that I have used over the years to obtain comprehensive information regarding ET is the International Essential Tremor Foundation (IETF).  This is a serious condition that affects 10 million lives in the U.S. alone.  If you would like to donate to support research for this disease, visit


Wednesday, August 24, 2011

Exercise and PD

I think most PD patients are aware that one of the best things they can do (and that they have control over) is exercise.  Regular exercise (what is right for you should be determined by you and your movement disorder specialist) can slow progression of the disease and even diminish symptoms in some cases.  Right now the emphasis seems to be on exercise that pushes you beyond what you would normally do.  Just yesterday we had a presentation at my local support group about how walking poles can help you walk faster and minimize fear of falling using nordic walking techniques.  The poles can be purchased at WalMart or Target for about $20 and are adjustable in length.  Adjust so that when you hold them your forearms are parallel with the ground.  Use them to push off with as you walk by planting them next to you and then pushing backward.  The rubber tips provide good traction.  Do not extend the poles forward before pushing back as this promotes leaning forward.  Try to stay in an upright position!  I bought a set for myself today and tried them out this morning.   I was amazed at how much faster I could walk without balance issues!  The poles can also be used to help with freezing or getting up from a chair indoors.  Talk to your doctor, or better yet, your physical therapist about how you might benefit from using these poles.

The Davis Phinney Foundation is a major proponent of the benefits of exercise.  Their programs have helped many of us by encouraging us to exercise and providing resources to assist us.  I support their valuable work and would like to pass along this appeal (which I will support):

The Davis Phinney Foundation is in the final push of a mini-fundraising drive this month, in conjunction with the USA Pro Cycling Challenge taking place around the state this week.   If everyone who reads this blog donated just $10, we’d reach our goal in no time at all.   Details can be found at

Monday, August 22, 2011

Having Parkinson's Isn't All Bad

Michael J. Fox wrote in his first book that, in spite of the trials and tribulations that go with having PD, he was a "lucky man".  I have a pretty good idea what he means.  The Michael J. Fox Foundation is providing funding for the research that we all hope will lead to, at least, a treatment or medication that will halt progression of the disease, and, beyond that, a cure.  Through Team Fox he is also attempting to galvanize participation by PD patients in the clinical research that is crucial to making progress.  They also encourage patients to throw off the apathy that often accompanies the disease and use their creativity to organize fundraising events.  As a result of these efforts and more, he is attempting to make a difference in the lives of millions of people.  On a personal level, I'm sure he would say that he has a heightened level of appreciation for the people around him, especially his family (I can certainly identify with this).

Fox also writes in his book about the stages of grief that most people go through as part of their PD journey (denial, anger, bargaining, depression and acceptance).  I guess it was a form of denial that I spent the initial months following my diagnosis in appointments with my ENT, another neurologist, and a cardiologist looking for alternative explanations for my symptoms.  At the same time, I learned as much as I could about the disease through the internet, books, seminars, support groups and more so that I could advocate for myself and be an active participant in the management of my disease.  By the end of my second year following diagnosis, I had completed what I view as my "inwardly-focused information gathering" time period.  I had completed my memoir, a very cathartic and inwardly-focused exercise and was ready to "reach out".  I was feeling an urge to spend less time thinking about myself and more time trying to help others.  I had gathered enough information that I felt I had a good idea what I was "accepting" and began to look for opportunities to share what I had learned with others in my position in order to try to help them.

Late in 2009, I invited fellow residents with PD in my retirement community via our newsletter to gather at my house to discuss possible interest in forming our own support group.  Since then, we have held regular meetings mainly for the purpose of trying to help each other.  We also share information about the disease.  We have named ourselves the "Movers & Shakers" and have our own t-shirts (thanks to the daughter of one of our members).  We look out for each other in different ways and have mourned the passing of two of our members over the last two years.

Some of our group members, including Linda and me, are active in our local community support group which is part of the Parkinson Association of the Rockies (PAR).  Our community group has guest speakers on various topics plus we sometimes split up into patient and caregiver groups to talk about issues.  I have been a guest speaker there on a couple occasions and have also spoken to other support groups in the area.  I have talked about Parkinson's in general, cognition and memory issues with PD, and DBS.  As a result of my involvement in these groups, in my community, and in my church, I have been invited to meet with individuals to talk about their situations and provide information and feedback that I hope is helpful.  A friend from my former church in NJ connected me via email to a friend with PD in Quebec.  A fellow community member asked me to meet with a family friend who has PD and was visiting from St. Louis.  After one of our caregiver/patient sessions at my local support group I was asked to speak to a family who had attended the caregiver session and was very concerned about their father.  While I made it clear that I was not a substitute for a movement disorder specialist, it was clear that their father was exhibiting the classic symptoms of lewy body dementia.  I gave them a brief overview of what that meant in practical terms and referred them to a doctor.  They quickly put aside their differences and realized they needed to pull together to help their father (and their mother who was becoming an overwhelmed caregiver).  It was kind of scary for me to be put in that position, but I think I was able to make a difference for that family that day.

Early this year we were visiting with dear friends of ours from NJ who spend time in AZ during the winter.  Of course, they had known of my Parkinson's diagnosis for some time.  As we talked, Linda and I (Linda knows a good deal about the disease at this point too) were concerned about some symptoms Judy (names have been changed to respect privacy) had been experiencing.  In fact, I think it was Linda that was first to put two and two together.  We advised Judy that, as a result of my experience, it seemed like her problems might warrant a visit to a movement disorder specialist (she had seen quite a few doctors, but not a neurologist).  Since they were going to be in the Phoenix area a few more months, I referred her to Dr. Lieberman, director of the Barrows Neurological Institute and Muhammad Ali Parkinson Center.  She emailed shortly we returned home to tell us she had seen Dr. Lieberman and had been diagnosed with PD.  Though she was not happy to receive this diagnosis, she was relieved to finally know what was wrong and to be working with a top doctor in the field.

I have also had the opportunity to participate in various clinical research studies.  I like to do this for two reasons:
  1. I may learn something that will be helpful to me or others.
  2. I can contribute, even if in a small way, to advancing knowledge about the disease.
These studies have included a vision/spatial perception study before and after DBS, a study that evaluated acupuncture for treatment of fatigue in PD, a database development study conducted by the National Institute of Health/National Institute of Neurological Disease & Stroke, and a Lee Silverman voice therapy study.

For the last year and a half, Linda and I have had the privelege of attending our local Deep Brain Stimulation support group meetings.  We are fortunate in Denver to be the only city in the country (plus the recent addtion of a spinoff group in Grand Junction) with such a group, thanks to the tireless efforts of Valerie Graham and Kate Kelsall who both have had the surgery.  These meetings gave us an opportunity to hear first hand about their experience from people who have had the surgery.  Now that I have had the surgery (this past March/April), Linda and I still go to the meetings to help others as we were helped.  I appreciate that Kate and Val have recommended me to attend a two day educational seminar to be held the western U.S. early next year that trains people to be PD advocates in their communities.

For me there is nothing better than having an opportunity to make a difference in someone's life.  It takes the focus off me and put's it on trying to help someone else.  So you could say that, in some respects, my involvement in these groups and activities is self-serving.  What I can say for sure is that Is personally gratifying for me to do these things.  It has not escaped me that this is a gift from God, even if I don't necessarily agree with His choice of gift wrap.  All of it is a gift.  The transition to an ideal retirement environment close to our kids (and grandkids), my writing, my music (maybe another blog?), and most of all the opportunity to connect with so many great people in the "Parkinson's community".  I am truly blessed.

Saturday, August 20, 2011

Writing a Memoir

In 2009 I wrote a memoir I titled FootprintsIt seems that the idea of creating something that says "I was here" and "my life mattered" is something that appeals to many people these days.  This is not to say that a memoir signals the imminent approach of life's end, but it is something the writer wants those close to him to have when that day comes.  Accordingly, my memoir contains a lot of personal recollections.  I am going to share the inspiration for the title which is three excerpts from stories/poems that resonated with me followed by the introduction which explains why I wrote the memoir.  I will include the table of contents to provide a sense of how I chose to organize the memoir.  Next I will share a story from the Early Years chapter that relates to the Carson book about my first and only dog before Little Fox, Nikki.  From the Falling in Love chapter (about how I met the lady who has been my wife for forty-two years and our life before the kids came along) is an excerpt from a story about our experience with off-base "housing" at Ft. Benning, GA.  Finally, I will share a list of guidelines for living that I wrote to help me focus on what is important in my life.


Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time.

Henry Wadsworth Longfellow (excerpt from “A Psalm of Life”)
Some people come into our lives and quickly go.
Some move our souls to dance.
They awaken us to new understanding with the passing whisper of their wisdom.
Some people make the sky more beautiful to gaze upon.
They stay in our lives for awhile, leave footprints on our hearts, and we are never, ever the same.

One night I dreamed I was walking along the beach
with my Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints, other times there was one set of footprints.
The Lord replied, “The times when you have seen only one set of footprints in the sand is when I carried you.”

Mary Stevenson (excerpt from “Footprints in the Sand”)


This is a collection of stories and thoughts that I have written for my sons. The idea behind this is that I would like them to have a chance to read some interesting and, possibly, entertaining anecdotes from my life before and after meeting their mother. I may also subject them to some important things I have observed and learned along the way. They are the intended audience for these writings, though they may find parts of it to be something they would like to share with their children in years to come. I would love to know more about my ancestors, so if any of this material gets passed down to future generations, I think that would be great.
My parents started this idea by videotaping my mom’s father in his elder years telling stories from years gone by. I have a copy of this tape. I did some videotaping with my mom a few years ago and have preserved that on DVDs. My sisters and I all have copies. I am choosing this format because I enjoy writing.
    This memoir, which was written between January and October 2009, is not for commercial publication and may not be reproduced without the expressed, written permission of the Hall family.

Table of Contents


Chapter 1:  The Early Years

Chapter 2:  Passions
Chapter 3:  Falling in Love
Chapter 4:  Love and Life Through the Years
Chapter 5:  Career
Chapter 6:  Perspectives
Chapter 7:  Health
Chapter 8:  Faith
Chapter 9:  Guidelines
Chapter 10: My Boys and Me
Chapter 11: Finish the Race Well

The Early Years


Nikki was my family’s dog when I was three years old and we were living in Mentor (a suburb of Cleveland, OH). He was a typical collie in that he was very watchful (based on their sheep herding breeding), loyal, and intelligent.
My mom had put me to bed while it was still light outside late one summer evening. When she looked out the front window she was surprised to see me across the street in the neighbor’s driveway pedaling a toy vehicle. (I must have gotten out of bed on my own and sneaked out of the house to go for a nighttime drive.) Nikki was with me. My mom could only watch in horror as the truck that had been parked in the driveway started to back up with me directly behind it (out of the driver’s sight). Nikki grabbed me by the back of the neck and pulled me to the side of the driveway as the truck backed up and crushed the toy vehicle. I would have died that day if not for Nikki!
We have a picture of Nikki on our refrigerator. I never owned a dog of my own until about seven years ago when Linda and I decided to get one. I very quickly determined that I would like to have a dog like Nikki, but decided to look for a sheltie (Shetland sheepdog) as they are smaller and less prone to disease. We adopted Little Fox and have appreciated the same loyalty and intelligence that I experienced with Nikki.  When we moved from Mentor to Cuyahoga Falls (a more heavily populated area), we had to give Nikki to a farmer because he chased cars. My family never saw Nikki again, but we never forgot him.

Falling in love

Fort Benning

We could have stayed in an apartment on base, but for reasons that escape me (it was probably cheaper), we rented a very small mobile home a few miles off the base. It was furnished in “early poverty” and had a kitchen, bathroom, one small bedroom the size of the bed and one tiny bedroom where we stored our stuff. It had an oil-burning furnace in a closet in the hallway. For those of you who have not spent time in the winter in southern Georgia, it can get “right cold.” The furnace turned out to be temperamental and occasionally opted to go on strike unannounced. I was determined to put my Yankee ingenuity to work and tackled the problem head-on. I opened the door to the furnace, exposing its inner workings. I was able to determine that I could re-light the furnace and noted that the oil flow was adjustable. With little regard for life and limb, I proceeded to light a Kleenex and throw it into the receptacle where the oil collected. When this didn’t work, I turned up the oil flow a hair and tried another Kleenex. After a couple more attempts, I gave the oil flow a more aggressive adjustment and threw in another lit Kleenex. I guess what followed could be called an explosion. Certainly the outcome was consistent with that description. Black smoke blew out, covering both me and the hallway. My hair was singed in a variety of places. When we went outside, we noted with interest that the aluminum pipe coming out of the furnace on the roof had blown off and was lying in the yard. Though I was slightly shaken, my pride was intact as the furnace was again functioning. It was with smug satisfaction that I approached the end of my training at Ft. Benning. My skills and fortitude had been put to the test in my war against that furnace and I had prevailed. Or so I thought.
The night before active duty was to end, Linda and I went out to a movie. When we returned to our “home away from home” and entered, we noticed that we could see our breath (never a good sign). We knew the oil tank had been running low, but we had not had it filled as we were leaving so soon. It was empty. My field training came in handy now as my military instincts kicked into high gear and I developed a cunning plan (OK, yes, I borrowed that one from King Julian in Madagascar). I turned on the gas stove and opened the door to heat up the place. This helped some, but we weren’t prepared to leave it on and go to bed. Besides that, it was still freezing in the bedroom. A precedent for our marriage was established at this point as Linda came up with the idea that solved the problem. She had a portable hair dryer that had an extendable hose, which hooked up to a plastic bonnet for drying her hair. We climbed into bed fully dressed, turned on the hair dryer, and stuck the hose under the covers. The warmth was wonderful and we quickly fell asleep. Sometime later, however, we both woke up sweating bullets. So we turned the hair dryer off. We fell asleep again and woke up a while later freezing. We turned the hair dryer back on. This cycle continued through the night until we woke up, fully rested and refreshed (not). The hair dryer had gotten us through night, but it would never operate the same after that. The furnace had gotten the last laugh.


Based on my experiences, there are some fundamental “guidelines for living” that I would pay more attention to if I could go back in time. Since that is not possible, I will be mindful of them now and in the future. I would recommend development of personal priorities for anyone. These are mine.  They are listed in the order of what came to mind, and do not necessarily reflect the importance of each.

·         Be happy.
·         Live in and appreciate the moment more.
·         Live my faith more completely.
o        Depend on God.
o        Do more for others.
o        Give thanks for all the blessings in my life.
o        Seek guidance.
·         Express love and appreciation openly and consistently.
·         Work on being more optimistic.
·         Be more committed to wellness.
·         Stay engaged mentally.
·         Continue to learn.
·         Maintain goal orientation.
·         Make space for the passions in my life.
·         Seek and live my “personal truth” without trying to force it on others.
·         Make informed choices and decisions with the help of God.
·         Be mindful of the impact of my words and actions on others.
·         Be respectful.
·         Be patient.
·         Be a good husband, father, son, brother, relative, and friend.
·         Seek ways to contribute to the greater good.
·         Understand and accept that I am imperfect as I attempt to live a life that is pleasing to God.

Saturday, August 13, 2011

About Carson

As previously mentioned, my response to Carson regarding his question about my shakiness was probably what gave me the idea to at least take a stab at writing about the experiences surrounding that event, earlier and later, without a clear sense of what would come out of it.  I also mentioned my attempt to "reach inside Carson to find his inner voice".  That part was truly not hard for me.  I think that is because, even though he is seven and I am sixty two, we have a lot in common.

I have realized for quite a while that Carson reminds me of me.  I think he looks similar to me when I was his age.  Outwardly, he is rough and tumble and all boy.  He loves his sports and currently is involved in soccer, baseball, football, and golf.  He loves to wrestle and otherwise rough-house with his five year old brother.  But on the inside, he is extremely sensitive and caring. I think that is why I resonate so well with him.  We genuinely like each other and enjoy spending time together.

All the events described in the book actually happened.  Nothing was invented to "suit the story" (I should clarify that the surgery had not yet been performed and that I wrote about a positive outcome, which thankfully turned out to be the case).  Perhaps that is why the words flowed so easily onto the page.  I did change the order of a couple of the pages.  The page on my Easter prayer was a late addition since it had not occurred at the time I started the book.

My publisher asked for some current video of Carson and me as well as other family members for a video trailer they are producing as part of the PR.  My younger son, Brian, recorded the two of us playing catch with the football in his back yard and then playing touch football with his dad and sister.  At the end of the day he, as usual, wanted me to pick him up so he could give me a big bear hug.  The trouble is that he is getting so big and solid that he is not so easy to lift anymore.  I will have to lift weights to get in shape so I can continue to do that.  His hugs are well worth the effort.