I had my first experience with neurological symptoms in 1991 when I was carrying a plate to a table while working for American Express. I was at a strategic planning offsite in Princeton, NJ. The plate started to shake, something that had never happened before. After examining me, my doctor told me it was something called "familial" or "essential (unexplained)" tremor which is often genetically transferred from a parent (in this case, my mom). He assured me that it would probably never amount to anything more than somewhat of a nuisance and that it WAS NOT Parkinson's (PD). I didn't really know what PD was, I just knew it wasn't good and I didn't want to have it. I got a second opinion from a neurologist who also assured me it was not PD.
During 1992-93 (still working for American Express in the World Financial Center-Manhattan) I had episodes while talking that I described as "brown outs" (like when the power in your house dips when the AC kicks in). I would be talking when the "dip" hit and I had trouble speaking momentarily and then resumed normal speed. It was an unsettling sensation that I experienced more than a few times. I also developed trouble swallowing (a classic PD symptom, but one that usually occurs later in the progression of the disease) during that time. The first bombing of WTC1 occurred in 2003 while I was working across the street in the WFC, another huge source of stress. We left NJ and moved to Colorado in 1994 for "quality of life". Swallowing problems reoccurred when I returned to Manhattan on business during 1998 (coincidence?-I think not). My tremor problems got noticeably worse as my tolerance for stress diminished during 2005-2007. I had sinus surgery in 2005 and during that time was still being told by neurologists that I did not have PD. I began getting very tired at work in early 2008 and my shakiness and dizziness were getting worse. Additionally, I began to have noticeable memory lapses and trouble processing verbal information. I made an appointment with a movement disorder specialist during April 2008 to see if my problems were related to my essential tremor. It was at that appointment that I was told that I had early stage Parkinson's in addition to essential tremor.
Fast forward now to 2009. I have been busy learning everything I could about PD, participating in support groups and clinical research, moving to a smaller home closer to the kids and grandkids, and pursuing my interest in writing. I had always thought I would like to write when I retired (though this wasn't the retirement I had pictured exactly). In November 2009 I completed a memoir that I had written mainly for my boys. Then I began working on a patient's perspective PD book but was having trouble developing a focus that felt comfortable. During November 2010 as I pondered the direction I wanted to take with my adult PD book, I took a break and wrote this:
AN EXCELLENT LIFE
Kirk Hall
August 10, 2010
Many years ago there was a young boy who loved to do things with his Dad.
They played baseball and football in their yard. His Dad built a backboard and hung it on the front of their garage so they could play basketball. They had lots of fun.
And they spent a lot of time together planting trees and a big garden. His Dad loved to work in the yard and taught the boy to love it too.
But what his Dad loved most was to play golf. When the boy was big enough he went with his Dad to the golf course and pulled his golf bag for him when he played with his friends.
Once in a while the boy was able to hit a ball while his Dad and his friends watched. One day he hit a ball farther than all of them, which made him feel good. His Dad was proud.
When he was only eight years old, the boy played golf by himself for the first time. He started playing with his Dad who taught him many things about the game.
As a teenager, the boy became very good and played in tournaments and on his high school golf team. He and his team did well which made him feel good. His picture was in the newspaper. His Dad was proud.
When the boy went to college he played on their golf team too. He played well and he won a special award, but he never actually received it. He was so busy with other things, he eventually forgot about the award.
One of the reasons the boy was busy was that he had met a wonderful girl and fell in love. They spent a lot of time together and made plans to get married. The girl helped the boy begin to understand how important it is to include God in our lives.
Many years later, the boy and girl had become a Dad and Mom with two boys of their own. They loved to play baseball, football, and basketball together. They had lots of fun.
The Dad and his boys worked in the yard together and the Dad taught them all the things his Dad had taught him so long ago.
When they were old enough, the Dad and his boys played golf together. Sometimes Mom would join them too. The boys became good players and their Dad was proud.
Many more years went by and the Dad became an old man. His Dad had passed away years ago. His boys had become young men with wives and families of their own. Before he knew it, the Dad and his wife had SIX grandchildren! They were very happy!
Then one day the old man found out he was sick and was not going to get better. He felt bad and worried. Then he remembered that God promised He would take care of us ALL THE TIME and he didn't have to worry. This made the old man feel better.
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I don't remember writing this. I discovered it recently and realized that this was probably the first step I took that ended up producing the "Carson" book. I had found a voice within myself (my inner child?) that was able to describe what mattered most to "him" in "his" life. I would later attempt to reach inside Carson to find his inner voice for the Shaky Paws Grampa book.
It was February 26, 2011 when I actually wrote the first draft of the book. I don't recall what inspired me to write the book. It may have been the time I was with Carson and his siblings, probably the previous fall because we were sitting at a table on their outdoor patio, when he asked why my hands shook. I told him not to worry and that Grampa just had shaky paws. If I had not said that, there would probably be no book.
I kind of liked what I had written and decided to share it with my good friend and neighbor, Becky White. Becky is a retired elementary school librarian. This was her email response:
"Loved it! There aren't that many stories out there for grandkids who worry or wonder about their grandparents as they get older. While it would probably be considered an "extra picture" book, it could also fall in the children nonfiction section (600s) of a library with more content about Parkinsons. That might include a note at the end or the beginning of the story.
Suggestion: Do you think you should include something about the name of the condition in the story? Maybe in page 7 or add another page to include some elementary description?"
Suggestion: Do you think you should include something about the name of the condition in the story? Maybe in page 7 or add another page to include some elementary description?"
These comments and "on-target" suggestions were the beginning of a very encouraging dialog with Becky that, more than anything else, made me believe that I might be on to something. Early in March, I started my series of deep brain stimulation surgeries (I had three surgeries in four weeks-the first two for the insertion of the probes on both sides of my brain into the thalamus and the third to implant the programmable pulse generator).
It is important to this story that I share that I have been Director of Marketing for two publishing companies since moving to Colorado. As a result, I had a good idea about how books are published, a very good idea about how they are marketed, and a pretty good network of folks I could talk to in the industry.
When I had recovered sufficiently from my surgeries, I decided to pursue this book idea further. I sent draft copies to my publishing network for feedback. With one exception, the feedback was that it is almost impossible to get a children's book published these days, especially for a first-time author. I was usually referred to a website where I could learn about how to write a children's book and get it published. It was apparent from the comments that little or no time had actually been spent looking at the book concept. The one exception was my former publisher at Navpress, Kent Wilson, who provided encouragement and helpful feedback.
Fortunately, I was also sending drafts at this time to contacts in the PD world. One of the first to receive it was Cheryl Siefert, the new executive director of Parkinson Association of the Rockies (PAR). Her response was extremely positive and she encouraged me to pursue publication (which she thought, realistically, might mean self-publishing). Cheryl became the second person who made me feel that I was on the right track. She later helped me locate my illustrator, Alison Paolini, who lives in the San Francisco area. I had decided from the start that I wanted to have the illustrations done by a PD patient. She sent samples of her work including some early concepts based on the story which were great. I am truly blessed to have Alison on my team!
TO BE CONTINUED...................
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