New Beginnings

My wife and I just got back from a trip to Phoenix where I had the opportunity to do presentations in the Phoenix area to the Muhammad Ali PD Center's support groups.  The programs were organized by the Center's Margaret Anne Coles and Jill Wallace (an area representative for Medtronic, the sponsor for the programs).  On March 5, I spoke to about 80 people with the East Valley Support Groups in Mesa, AZ.  On March 6, I spoke to about 75 people with the West Valley Support Groups in Sun City West, AZ.  The local Fox network TV station recorded some of the program and interviewed me.  I should have a link that I can publish to this material soon, as they plan to run it prior to the week of March 26 in conjunction with a PD fundraiser.

At both of these presentations, I discussed a variety of information related to my ET/PD journey, deep brain stimulation therapy, my "new career" as a patient perspective PD advocate and author, my book and how I hoped it would help PD families.  I closed with a subject I called "New Beginnings".  It is rather personal, but I decided it might be worth sharing:

I sat in church recently listening to our pastor’s comments about Lent as an opportunity for New Beginnings as well as Endings (Lent marks the beginning of preparation for Easter and the end of Advent).  It is a time for reflection, taking stock, and rededication.  I had been subconsciously bouncing this concept around when I sat down to think about what I would like to say to you.

Late in 2009, I realized I was spending too much time worrying about my situation and did not have much peace of mind.  I decided it was time to reach out to try to help others.  I started a support group in my community and began to increase my involvement in other area support groups.  This was followed by requests for presentations, involvement in clinical research studies, the writing/publication of the book, and ultimately (again, with the help of PAR and Medtronic) the opportunity to take my patient perspective speaking involvement to a new level.  The book and my advocacy work has generated media interest beyond what I could have imagined.  Most importantly, I can honestly say that I feel that I am doing work that has value and that I was meant to do, which gives me great peace of mind.

I wanted to share my story with you to demonstrate what I did when I realized that I needed to draw a “line in the sand”, leave some things behind, and start fresh WITH A NEW FOCUS.  I would encourage all of you, individually and collectively, to reflect on where you are in your journey today and consider the possibility of a “new beginning” that resonates with you. 

This could be something that you undertake in your support groups by taking stock individually and developing possible goals for sharing with others.  Your ideas may help stimulate new possibilities for your friends and visa versa.  I would encourage you to think about things you can do for the “greater good” including participation in clinical research studies in your area (these are easy to find) or fund-raising events.  Or it could be something as simple as spending time with a friend, deciding to increase exercise (physical and/or mental) in SPECIFIC ways, or evaluating your home setup to reduce risk of falls.  I would encourage you to develop these goals with input from your caregiver and then “sleep on” them to ensure that they are actionable and realistic within the context of your situation.

I hope these comments provide "food for thought" relating to the importance of remaining physically and mentally engaged as well as goal-oriented.  Perhaps you would like to do something like this with your local support groups.

Shaky Paws Grampa was featured in the Denver Post!

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