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 http://www.essentialtremor.org/choose-your-donation-type.
"
Wednesday, August 31, 2011
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 http://davisphinneyfoundation.org/giving/usa-pro-cycling-challenge/.
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 http://davisphinneyfoundation.org/giving/usa-pro-cycling-challenge/.
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:
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.
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:
- I may learn something that will be helpful to me or others.
- I can contribute, even if in a small way, to advancing knowledge about the disease.
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 Footprints. It 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.
Mary Stevenson (excerpt from “Footprints in the Sand”)
FOOTPRINTS
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.
Anonymous
~
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”)
Introduction
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
Introduction
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
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.
Guidelines
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.
· 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.
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.
Wednesday, August 10, 2011
How "Carson And His Shaky Paws Grampa" was "born" (cont.)
I had now reached the point where I had to decide if I was serious about publishing this book. Was I prepared to subsidize the cost of self-publishing (since the chances of finding a publisher willing to publish it seemed somewhere between slim and none)? Which companies were the best candidates for self-publishing (there are many). How did I want to market the book? If I am lucky enough to actually make any money from this project, what do I want to do with it? One question led to another and another.........
With my wife's approval I decided to go for it. I asked Becky (my neighbor and advisor) and Alison (my illustrator) for self-publishing recommendations. I proposed a plan for sharing any profits with Alison and she accepted. Part of that plan was that we would give a portion of any proceeds to Parkinson's research. I started the mind-boggling job of talking to prospective publishers hoping to find one that would meet my needs and budget.
This is probably a good time to share that I, like most folks with PD, face some cognitive challenges that have made this process even more daunting. I do not multi-task well. I have problems with what is known as "executive function" (organizing and scheduling) and "working memory" (the ability to actively hold information in the mind needed to do complex tasks such as reasoning, comprehension, and learning). Also, I have problems with tiredness that are exacerbated by periods of intense concentration (like working on the computer or driving). I think it helped a great deal that I was highly motivated to see this project through. The thought of handing the book to Carson with no forewarning and seeing the look on his face (as well as the rest of the grandchildren) would make all of this worthwhile (I hoped).
Since I have a good deal of experience with marketing, I had a very clear idea about how the book would be best marketed. The primary customers would be those who have PD, their caregivers, and their family and friends. This was not a book that would do well sitting on a shelf in a bookstore. I needed to find a way to make the primary customers aware of the book, communicate what the book was about, explain what the value of the book is (if any) to them, and give them an opportunity to buy it. I decided to communicate with the "PD world" on a number of levels, including the top sources of information and research funding, the regional organizations that provide services and communicate with PD support groups, and, at least to some extent with patients. I began to make contact with organizations like Team Fox, the Muhammad Ali Parkinson Center, the Davis Phinney Foundation, and many more asking if they would support the book by posting information about it on their websites.
During this time I must have researched a couple dozen self-publishing companies and talked to about ten. Some were easy to cross off the list for one reason or another. I had a pretty clear vision from my days as a publishing marketing director of what I wanted. Also, I did my homework to determine what a reasonable price would be. Since it was my hope to have the book in print by October so that it would be available for Christmas ordering, I was concerned that I hadn't found a company that I felt comfortable with and the clock was ticking. Plus I was confused by all the options for self-publishing offered by the different companies. I took one last pass at doing a google key word search and found a small Christian publishing company that seemed to be a good fit, Innovo Publishing. I communicated with Terry Bailey, their Product Development VP, and felt right away that I was in the right place. Terry assured me she would give me personal attention and answer all my questions. After some initial exploration of their self-publishing option, I asked about another option listed on their website for traditional publishing. The timing was good as I had recently received a number of commitments of support from some major PD organizations. I described my direct marketing plans and shared my experience as a publishing marketing director and direct marketing VP with American Express. A short time after talking with the managing partner for Innovo, Bart Dahmer, on the phone, I received an offer from Innovo for them to publish the book. I was happy to accept and get out from under the self-publishing process. Now I could devote my energies to working on my marketing plan.
Support has continued to come in from organizations including the European Parkinson Disease Association, the Parkinson Alliance, and the Southeast Parkinson Disease Conference. More are in the works, including all the regional counterparts to Parkinson Association of the Rockies.
Terry told me that there would be a PR press release before the book was ready to go and that they would consider doing a video trailer attachment. I had already generated enough support to make that type of investment worthwhile.
During the time since I had agreed to a publishing contract, I had been in communication with my illustrator, Alison, regarding what I envisioned for illustrations to go in the book, leaving ample room for artistic interpretation. I was extremely pleased as her ink and watercolor sketches began to arrive. I could see that they would be just what was needed to bring the book to life! I have now seen the interior of the book and it looks great! The last piece being worked on as I write this is the cover.
There is still a lot to do regarding the marketing of the book even though it is nearly complete. But I am energized by the support and encouragement I have received from Innovo, family, friends, and my churches (past and present). Every day, a new piece seems to fall in place. Yesterday it was a nice article on the book in the PAR electronic newsletter. Today it was a posting of information about the book on the Team Fox blog (August 12). I recently told my associate pastor that I am amazed by the way that all of this has come together. In many ways, I feel that I am being led. The way I described it to her was that when God tells me to jump, I don't ask how high, I just jump as high as I can and trust Him to take care of the rest.
With my wife's approval I decided to go for it. I asked Becky (my neighbor and advisor) and Alison (my illustrator) for self-publishing recommendations. I proposed a plan for sharing any profits with Alison and she accepted. Part of that plan was that we would give a portion of any proceeds to Parkinson's research. I started the mind-boggling job of talking to prospective publishers hoping to find one that would meet my needs and budget.
This is probably a good time to share that I, like most folks with PD, face some cognitive challenges that have made this process even more daunting. I do not multi-task well. I have problems with what is known as "executive function" (organizing and scheduling) and "working memory" (the ability to actively hold information in the mind needed to do complex tasks such as reasoning, comprehension, and learning). Also, I have problems with tiredness that are exacerbated by periods of intense concentration (like working on the computer or driving). I think it helped a great deal that I was highly motivated to see this project through. The thought of handing the book to Carson with no forewarning and seeing the look on his face (as well as the rest of the grandchildren) would make all of this worthwhile (I hoped).
Since I have a good deal of experience with marketing, I had a very clear idea about how the book would be best marketed. The primary customers would be those who have PD, their caregivers, and their family and friends. This was not a book that would do well sitting on a shelf in a bookstore. I needed to find a way to make the primary customers aware of the book, communicate what the book was about, explain what the value of the book is (if any) to them, and give them an opportunity to buy it. I decided to communicate with the "PD world" on a number of levels, including the top sources of information and research funding, the regional organizations that provide services and communicate with PD support groups, and, at least to some extent with patients. I began to make contact with organizations like Team Fox, the Muhammad Ali Parkinson Center, the Davis Phinney Foundation, and many more asking if they would support the book by posting information about it on their websites.
During this time I must have researched a couple dozen self-publishing companies and talked to about ten. Some were easy to cross off the list for one reason or another. I had a pretty clear vision from my days as a publishing marketing director of what I wanted. Also, I did my homework to determine what a reasonable price would be. Since it was my hope to have the book in print by October so that it would be available for Christmas ordering, I was concerned that I hadn't found a company that I felt comfortable with and the clock was ticking. Plus I was confused by all the options for self-publishing offered by the different companies. I took one last pass at doing a google key word search and found a small Christian publishing company that seemed to be a good fit, Innovo Publishing. I communicated with Terry Bailey, their Product Development VP, and felt right away that I was in the right place. Terry assured me she would give me personal attention and answer all my questions. After some initial exploration of their self-publishing option, I asked about another option listed on their website for traditional publishing. The timing was good as I had recently received a number of commitments of support from some major PD organizations. I described my direct marketing plans and shared my experience as a publishing marketing director and direct marketing VP with American Express. A short time after talking with the managing partner for Innovo, Bart Dahmer, on the phone, I received an offer from Innovo for them to publish the book. I was happy to accept and get out from under the self-publishing process. Now I could devote my energies to working on my marketing plan.
Support has continued to come in from organizations including the European Parkinson Disease Association, the Parkinson Alliance, and the Southeast Parkinson Disease Conference. More are in the works, including all the regional counterparts to Parkinson Association of the Rockies.
Terry told me that there would be a PR press release before the book was ready to go and that they would consider doing a video trailer attachment. I had already generated enough support to make that type of investment worthwhile.
During the time since I had agreed to a publishing contract, I had been in communication with my illustrator, Alison, regarding what I envisioned for illustrations to go in the book, leaving ample room for artistic interpretation. I was extremely pleased as her ink and watercolor sketches began to arrive. I could see that they would be just what was needed to bring the book to life! I have now seen the interior of the book and it looks great! The last piece being worked on as I write this is the cover.
There is still a lot to do regarding the marketing of the book even though it is nearly complete. But I am energized by the support and encouragement I have received from Innovo, family, friends, and my churches (past and present). Every day, a new piece seems to fall in place. Yesterday it was a nice article on the book in the PAR electronic newsletter. Today it was a posting of information about the book on the Team Fox blog (August 12). I recently told my associate pastor that I am amazed by the way that all of this has come together. In many ways, I feel that I am being led. The way I described it to her was that when God tells me to jump, I don't ask how high, I just jump as high as I can and trust Him to take care of the rest.
Sunday, August 7, 2011
How "Carson And His Shaky Paws Grampa" was "born"
Don't worry, I won't pull a Michener and start this story during prehistoric times. However, since the book deals in part with Parkinson's, I will talk a bit about how that evolved.
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:
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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