Thursday, December 29, 2011

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

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