Loss of Motivation and “The 8 Disciplines of a Parkinson’s Patient”

14 Jun Loss of Motivation and “The 8 Disciplines of a Parkinson’s Patient”

Stephen Bergenholtz is an active member in the Parkinson’s community in Seattle.  It has been a pleasure having him as part of The Parkinson’s Fitness Project’s A.M.P. Class Team.  He recently wrote a very relatable piece for The Michael J. Fox Foundation about PD and Apathy and I am pleased he was willing to share that piece as part of our blog as well.  I think the advice he gives is something every person living with PD can follow.  Thanks, Stephen

-Nate Coomer, PT, 

“Parkinson’s disease (PD) made me lazy, I told myself as I wallowed in lassitude for years after my diagnosis. The loss of dopamine-producing cells in those with PD affects not only one’s physical ability to move, but the motivation to move as well. How do you climb out of this pit, when you don’t feel like doing anything at all?

One strategy I used was to change my perspective. Instead of forcing myself to enjoy activities I should do, I searched for things that I enjoyed doing in the first place and let the appeal of the activity substitute for loss of motivation. To my surprise, I discovered new activities that I love, like playing pool, photographing landscapes, tossing a softball with a friend, or throwing stones at scrap of wood floating in a lake. Learning to do new things can be fun, if there is an early reward in the form of a new skill. Before long, engaging in these enjoyable activities had a spillover effect, motivating me to do “un-fun” activities, such as exercising, on a regular basis.

For me, another substitute for loss of motivation is simply discipline. The word “discipline” may have negative connotations, but all it means is regular repetition of an activity until eventually it becomes comfortable, even pleasant. It’s like learning to drive a manual transmission car.

Next, I thought about the practices and activities which helped me the most in dealing with Parkinson’s. I shared this list with my friends who have Parkinson’s and circulated it among support groups in our area. I refer to this list as “The 8 Disciplines of a Parkinson’s Patient”:

1. I will meet regularly with my doctor, follow his or her advice and find a new doctor if he or she becomes unavailable.
2. I will take my prescribed medications, track my medication supplies and discuss any side effects with my doctor.
3. I will follow a personalized exercise program in consultation with medical and fitness professionals.
4. I will make good sleep habits a priority and reduce factors which inhibit me from getting a good night’s rest.
5. I will foster an attitude of optimism and well-being and strive to alleviate stress through fun and healthy activities.
6. I will remain engaged with my family, friends, caregivers and others, resisting the tendency to withdraw socially.
7. I will read about maintaining a positive outlook grounded in my faith beliefs or my spiritual development.
8. I will contribute to the Parkinson’s community by giving my time, talents, money, or by participating in medical trials.

As every person with Parkinson’s is different, every person’s journey with the disease is different. What motivates you? What are your personal “disciplines”?”

-Stephen Bergenholtz