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.