I Have a Parkinson’s Challenge

By Dwight E. Roth 

When referring to my own Parkinson’s I prefer not to use the word disease.  I do not feel at dis-ease with my health.   If my symptoms become severe maybe I will use the word, disease.  For the present I prefer to say I have Parkinson’s Challenge (PC) – a summons, a call to learn about the nature of Parkinson’s for others and myself.

People with Parkinson’s (PWP) typically become depressed when diagnosed as having PD by a neurologist.  Many neurologists are not very helpful   — they tend to say upon diagnosis, “Here is a prescription.  See you in three months.”   This is tragic because there are a wide variety of services that benefit PWP.  Most people are not aware of this. When depressed it is hard to look for these resources. Somewhere I read that about forty percent of PWP do not seek any service/treatment after being diagnosed.

When I was diagnosed in January of 2013 I was not depressed but I was frustrated by made my doctor because he gave me only a pharmaceutical prescription.   I wanted more for myself and I wanted to be an advocate for others PWP.   I quickly searched for another neurologist and found one in Wichita, KS.     A few months ago she moved to another state and I found someone to take her place.

  My new neurologist is holistic in her approach to PD and paid close attention  in our first meeting when I said I practice reflexology on my hands and feet (I was trained as a reflexologist by the  International Institute of Reflexology  http://reflexology-usa.net/).   Likewise she was interested in my taking lessons to help my balance through BAL/A/V/X http://www.bal-a-vis-x.com/.    The latter since its beginning thirty years ago has been for youth with special needs.  The creator / director of this program, an older adult himself, a long time professional educator (and in my view mystic/shaman) is beginning to see how  BAL/A/V/X might help in balance problems for people late life. I think that reflexology and Bal/A/V/X are helpful to me –at little cost and no side effects.                                                                                                  

    In my Parkinson Challenge in Wichita I have been served well by physical and occupational therapists.  Of all treatment for my PC these workers have been the most important.  They have taught me the necessity of specific exercises for Parkinson’s – especially use of a treadmill helpful for stamina, stretching, stride/gait, balance, etc. 

One of my occupational therapists (WWSD) seeing my interest in dance suggested I attend the Dance for PD program in Brooklyn, N.Y.  I did so and it was a great experience.  Positive outcomes for PWP who dance in a structured class include: improved motor control, decreased rigidity, increased balance, reduced risk of falling, and improved self-concept. 

Most physical exercise rearranges the neurological pathways.  For me, dance is the best way to do this.  Thus it was that in 2014 I teamed with a professional dancer, Danika Bielek, director of the Bethel College Academy of Performing Arts to create Rhythm Connections – a dance program for people with mobility challenges http://www.thekansan.com/article/20150905/NEWS/150909620.  We have led workshops in five PD support groups in central Kansas.  Additionally, we had our first class at the Academy this fall.  Eight individuals participated in this class that met for ten weeks, one hour weekly.  Danika meets each Saturday at the Kidron–Bethel Retirement Community for one hour.  We have received excellent feedback regarding our work. 

I did not ask for Parkinson’s.  Now, that I have it, as said above, I see it as a Challenge – a call. This summons is to learn as much as I can about PD to help others and myself, especially to create new neurological pathways. https://images.search.yahoo.com/yhs/search;_ylt=A0LEVvqAOHRWUHUAmQwnnIlQ?p=neeurological+pathways&fr=yhs-mozilla-002&fr2=piv-web&hspart=mozilla&hsimp=yhs-002.  Creation of these pathways, help counter the neurodegenerative that is basic to PD.   I want to help PWP to see that they have a responsibility to slow the breakdown of their system of nerves and muscles. 

In my PC I am learning so much about the amazing human brain.  I am meeting wonderful, exciting people – professional health care workers and PWP. 

I realize that my Parkinson’s symptoms could drastically worsen.  In that case I hope I can take the view suggested by Wendy Lustbader regarding the meaning of frailty. She said according to a Sufi idea two curtains separate the individual from the sacred – security and health. If  developed advanced PD after tried all forms of appropriate health care technology and found that I was frail, I hope would exp.erience the sacred in its mystery, wonder, and love.  And, maybe a bit of holy foolery to make others and myself laugh for if  can laugh at something problematic, chances are you have conquered it.

I am becoming interested in teaching ways to improve balance and how to fall to lessen broken bones, especially hips.  Hopefully, I will do so through instructions from Danika and the BAL/A/V/X program. 

 My Parkinson Challenge is expanding.  It is exciting.  It is as if I am receiving a first rate graduate school education where I simultaneously professor and student – somewhere past the borders of academia as we know it.   The PC summons is fascinating.    Sunnum bonum –Mysterium magnum

Sources

http://www.parkinsonsdisease-guidebook.com/

Wendy Lustbader, (1999).  “Thoughts on the Meaning of Frailty”,  Journal of the American Society on Aging.  Winter, pp. 21-24.