Shaky Paws Newspaper Interviews and Book Reviews

A book review and story about Carson, my book, and me ran in the book section of the Denver Post on February 26,2012.  View it at: http://www.denverpost.com/books/ci_20031443.

An article reviewing my  December 8 presentation at the University of Colorado Health Sciences Library also ran in the December 15, 2011 edition of the Aurora Sentinel.  View it at: http://www.aurorasentinel.com/hp_metro/article_0341bce8-274d-11e1-9c67-0019bb2963f4.html.

Another article on the book ran in the Denver Post Hub section on November 15, 2011.  View it at: http://yourhub.denverpost.com/southmetro/q-kirk-hall-author-carson-and-his-shaky/Eg9RIAQkM6UzXjZ1OrQiTO-ugc.

Watch for postings on TV interviews related to my upcoming programs at the Muhammad Ali Parkinson Center in Phoenix next week.

Fatigue and Parkinson's Disease

Fatigue or excessive daytime sleepiness are a significant problem for at least one third of PD patients.  The intro to a 2009 About.com article titled About Fatigue in Parkinson's Disease reads:

For many people with Parkinson's disease, fatigue is just as disabling and unpleasant a symptom as the motor slowing or the trembling. Fatigue undermines all kinds of daily activities and motor rehabilitation programs. It feeds into our emotional reactions to PD symptoms and makes them all the harder to bear. It undermines our ability to cope with the challenges PD presents to us each day and makes it more difficult to connect with others. Fatigue therefore can sometimes increase our social isolation as it saps us of the energy we need to step out the door and to interact with others. If your doctor has not asked you about your level of fatigue, but you're symptoms or have questions about it, please bring it up.

To read the entire article on this subject, visit http://parkinsons.about.com/od/signsandsymptomsofpd/a/fatigue_in_PD.htm.

Upcoming Event Schedule

Kirk will be making book/PD advocacy presentations at these upcoming events:

• February 11 (11 am)/The Doctor Is In/Pulliam Building, 545 N. Cleveland Ave., Loveland/Sponsored by PAR
• February 14 (10 am)/Longmont PD Support Group/Clover Building, Boulder County Fairgrounds/Sponsored by Medtronic
• March 5 (1:30-3:00pm)/Healthsouth Rehabilitation Hospital, 5652 E. Baseline Rd, Mesa, AZ/Sponsored by the Muhammad Ali Parkinson Center and Medtronic
• March 6 (10:00-11:30am)/Lord of Life Lutheran Church,13724 W. Meeker Blvd., Sun City West, AZ/Sponsored by the Muhammad Ali Parkinson Center and Medtronic

KOA Radio Interview

I had the opportunity to do a 15-minute radio interview in December 2011 with Robbyn Hart at KOA, the leading talk radio station in Denver. In the interview, I answer questions and provide information regarding Parkinson's disease, essential tremor, and deep brain stimulation therapy, as well as my book, Carson And His Shaky Paws Grampa.  (I gave an incorrect website address in the interview for Parkinson Association of the Rockies. The correct address is http://www.parkinsonrockies.org/)

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 http://www.pdf.org/en/coping_symptoms.

RESOURCE LIST & DONATION APPEAL

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* (http://www.michaeljfox.org/)

2. National Parkinson Foundation* (http://www.parkinson.org/)

3. Muhammad Ali Parkinson Center Movement Disorder Clinic*

(http://www.thebarrow.org/Neurological_Services/Muhammad_Ali_Parkinson_Center/index.htm)

4. American Parkinson’s Disease Association* (http://www.apdaparkinson.org/userND/%20index.asp)

6. National Young Onset Center* (http://www.youngparkinsons.org/)

7. Deep Brain Stimulation Information (http://www.medtronic.com/health-consumers/index.htm) or http://www.dbs-stn.org/*

8. International Essential Tremor Foundation* (http://www.essentialtremor.org/)

9. Davis Phinney Foundation* (http://www.davisphinneyfoundation.org/)

10. Parkinson Association of the Rockies* (http://www.parkinsonrockies.org/)

11. List of Parkinsons organizations worldwide: (http://www.pdcaregiver.org/Parkinsons_Organizations.html)

12. To get contact information for Parkinson’s organizations and support groups in your area go to: http://www.parkinson.org/Search%20Pages/Search.aspx?pSearchOpt=Local and http://www.apdaparkinson.org/userND/ChapterLocation.asp

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 http://www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html

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.

Carson & His Shaky Paws Grampa Press Release

FOR IMMEDIATE 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 www.innovopublishing.com.

Contact Information:

Dr. Bart Dahmer

Innovo Publishing LLC

Phone: 1-888-546-2111

Web Site: www.innovopublishing.com

Email: info@innovopublishing.com

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.

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 (http://www.medtronic.com/health-consumers/index.htm?cmpid=patients_global_nav) or the Parkinson Alliance DBS site (http://www.dbs-stn.org/).