Living with Parkinsons - Part 3 of 3

Living with a disease that has no cure can be daunting.  Diagnosed in 2004, I decided to first come to terms with the fact that it would be something I would have to deal with the rest of my  life.  Soon after I made a few key decisions.

First, I would learn what I could about the disease.  At the time we were living in Pennsylvania where specialists were leaving due to high insurance rates.  I was being seen by a Neurologist at the highly touted Hershey Medical Center.  The issue was doctor turnover.  I saw three different neurologists in less than three years.   It led me to check other areas for quality health care, i.e. Philadelphia, Baltimore.  That search led me to Denver Colorado.

I had decided to retire at age 60 in 2007.  Health care was paramount in terms of where I could find the best overall health care.  It all came together when my wife and I decided to relocate to Denver to be close to our grandsons.  My research found the Denver metro area provided a number of world class facilities.



Located in north Aurora, Fitzsimons Life Science District, is the nations largest scientific and medical-related development project.  Adjacent to Fitzsimons is Anschutz Medical Campus, University of Colorado Denver, and University of Colorado Hospital, the top performing academic hospital in the country, and Children's Hospital Colorado, are also located in that part of the city.  National Jewish Health, the nations top respiratory hospital, is in Denver, and Craig Hospital, also in the city, is ranked 7th in the nation for rehab. That is an impressive collection of the best of the best in terms of quality medical services and cutting edge research in one metropolitan area.
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In terms of neurology, the Colorado Neurological Institute, and the Rocky Mountain Movement Disorders Center, PC, located in Swedish Medical Center, Englewood, Colorado is a world-class facility in the treatment of neurological disorders.  Six years after moving to the Denver area, I have no regrets.

Part 3 of 3:

In this third and final part of the series on living with Parkinson's, the text will focus on what I consider to be the elements to sustaining a good quality of life and active lifestyle.  They are: Mobility, Communication, Nutrition, Exercise, Executive Function, and Emotional Well-Being.  Keep in mind, every person is different in terms of how they both approach and live with a disease with no cure.  This is my approach.

Never one to spend time 'on the couch' my life has been full of opportunities.  As a 9-year-old, I spent most days outside enjoying what a rural atmosphere had to offer.  My teen years were focused on friends, family, and figuring out my future.  Adult life was crammed full of the responsibilities of making a home for my family, raising two daughters, while maintaining a strong work ethic in my career.

In retirement, I spend virtually no time on the couch, and little time in the easy chair.  That is to say, most days there is no predetermined schedule where I must be someplace at a specific time.  It's gratifying to know I make my schedule every day.

This account of living with PD would not be as positive and optimistic, had I not met Dr. Rajeev Kumar.  Dr. Kumar is the Medical Director of the Colorado Neurological Institute, Rocky Mountain Movement Disorder Center, PG, in Englewood, Colorado.  Soon after moving here, my wife and I decided to attend a seminar led by Dr. Kumar.  The time spent that day listening to him and learning about advances in the treatment and care for those living with PD convinced me to make an appointment.  It was the best decision I made in terms of my future.

It didn't take long for Dr. Kumar to figure out the correct medication dosage needed to control my symptoms.  It was like I never lost an opportunity to do what I enjoyed doing...biking, hiking, backpacking...throughout my life.

Mobility:

Walking is recommended for many ailments, including Parkinson's.  The American Heart Association suggests at least 150 minutes of moderate exercise or 75 minutes of vigorous exercise per week.  It is gratifying to know I routinely surpass those numbers week after week.

One day a week is reserved for hiking in the Colorado back country with a group of friends.  That activity begins in April and continues through October.  Over the winter months, hiking boots are exchanged for snowshoes for more walking on some of the same trails as summer but they all look and feel totally different. 

Balance and posture can be significantly compromised when going up/down stairs, walking in public, or hiking.  To help me retain a good sense of balance and posture on trail, trekking poles are the answer.  Hiking also aids my ability to sustain a good amount of dexterity.  When grabbing my poles, the focus is on my fingers to maintain a firm grip.  In the house and in public, the stretching and exercises I do in yoga help maintain good posture and better balance.

Hiking also causes me to activate my brain to a higher gear.  From the review of a trail map the day before a hike, to making decisions on trail of where to plant my poles for stability, or place my foot so as to not turn an ankle or blow out a knee, are tasks that compel the brain to work and make connections that otherwise may not be made.

Communication:

Not known as a gregarious person in public, I tend to hold brief conversations compared to more lengthy detailed ones years before.  If given time to consider what to say...as when writing an article like this...I can develop a thought into a sentence and on to a story the reader can follow and understand.

If I am in a face to face conversation where the pace is faster than my brain can find words to keep a thought moving forward, I simply offer shorter responses or just exit the conversation.  Over the years, keeping a journal, writing a legacy letter, researching family history, and writing this blog have all served to cultivate the basic tools needed and extend my ability to communicate with others.

Communicating in the form of handwritten letters is something rarely done these days.  Since my mother passed in 2008, I have kept in touch with two of here trusted and life-long friends through hand-written letters.  I average 4 to 6 tablet pages/letter and usually add images taken on hikes or from events with grand kids.  I have found that handwriting allows my finger tips to be more sensitive, have a focused train of thought, and I am better able to fully write out a thought sent by my brain.

A secondary diagnosis received within the past two years is that of 'mild cognitive impairment.'  I can be told the name of a person one minute.  The next minute, I have no idea what that name is.  So I simply ask more questions.  Currently, this is not a problem.

Nutrition:

I can honestly say, I have never been on a diet.  Why, because I was never in a situation where I gained a large amount of weight.  A gain of 5 to 7 lbs. on a few occasions was a big deal.  If I did gain that much, an already active lifestyle was excelerrated to trim the weight.

My wife has been the biggest reason for both of us to remain healthy in our late 60's.  Our food intake has never been unreasonable.  Modest portions at meals is always the key.  Primary meats each week include, chicken, turkey, and fish.  We do eat red meat but it is limited.  Pastries and sweets are kept to a minimum.  Snacks primarily consist of fruits, nuts, grains, and berries.  I eat blueberries virtually every day.


Exercise:

I mentioned the primary activities I enjoy before in this section.  There is no rigid schedule to do specific exercises, but not a week goes by that I don't take time to cycle, hike, take a yoga class, walk the treadmill, or go on a multi-day backpack trip.

Executive Function:

Organizational skills were common throughout my career.  It was common to schedule, plan, and lead meetings in business for many years.  My job involved developing and reporting detailed reports regarding the quality of components purchased by the firm.

I have been fortunate to be a member of the Advisory Committee at Aurora Center for Active Adults, serving as the chairman this year.  The opportunity to provide new and fresh ideas, present opinions, and make an effort to engage other members to become engaged has helped me to feel a sense of value.

For a number of years, I have kept a 'Life List' of things I want to do and places I want to visit, as a means of keeping a handful of things to look forward to in life.  No dates are attached to the items.  If I complete a goal, it goes to the completed list.  If an item is not met in the current year, it either moves up on the list next year or follows a new exciting item in the current year.  The fact that my wife plans on retiring before the end of the year, means we will have time to spend planning things to do together.

Emotional Well-being:
 

This may well be the most important element of them all.  If I were not a positive thinking person, it would be a difficult day every day.  For me, there is no thinking about what I can't do, rather what can I do to remain productive, to give back to those who inspire me.

Life is challenging.  If I am on trail faced with a long steep up, I transition into a "zone" where my mind is totally focused on the task in front of me.  Get to the next bolder on the right, get to the big spruce at the next bend, or reach the end of the valley stretched out ahead.  When I push through a challenge, I feel a sense of accomplishment, exiliration, and satisfaction.

I enjoy small accomplishments.  Be it getting into both socks on the first try, pushing the clutch in to the floorboard in one smooth motion, or hand-writing a letter without having to cross out a word that has no place in a sentence.

I have always advocated taking reasonable risks.  Whether behind the wheel on the highway, or bush whacking in the back country, I am one who will take a risk if it appears to be worthwhile.  It relates to the part of me that says, 'Live for no regrets.'  In the legacy letter to my two daughters, I talked about the loss of my grandfather, when I was eight.  Then I lost my father before having an opportunity to tell him I loved him. Finally, my mother was of the opinion that a doctor would have a pill for any pain or condition.

Finally, I find it important to give back to those who inspire me, and to remain connected to family and friends.

That is my recipe for life.