A VISION FOR THE FUTURE

 

I have been participating in a project as a patient advocate since 2015 testing a “patient-

centered” approach to medicine.  Under the leadership of Dr. Benzi Kluger, a team-

based, holistic system that focuses on improving quality of life at every disease stage for

 PD patients, as well as their care partners and families, is becoming a reality.  That

 system is referred to by the enigmatic term “palliative care” in the medical world,

 though it is also called “comfort care” in some cases to reduce confusion.

I expressed frustration in conversations with Dr, Kluger about the emphasis on the clinical aspects of medicine at the expense of more personal relationships. The term that describes a traditional relationship with patients is “curative”. The palliative approach adds a second layer based on increased attention to considerate communication and assisting patients in making critical choices that meet their needs and wishes, thereby improving their quality of life.

The progress that has been made is extremely gratifying for me.  At the same time, I hope that patient-centered approaches become standard practice in all categories of medicine as opposed to selected “silos”.  When and if that happens, my vision of truly patient-centered medical care can become a reality.

Loneliness

 

Response to article in Dr, Michael Okun blog:

As my symptoms have evolved over the last five years or so I have intentionally reduced my involvement in advocacy. I remain very much committed to the PD "palliative care movement" and INPCS.

 

Interestingly, I have become increasingly involved in music therapy since joining the Arizona Tremble Clefs (trembleclefsarizona.org). As my PD has evolved, my appreciation for this group and its members has grown. I have always enjoyed singing, but as my vocal ability has deteriorated, I find that what I enjoy most is the sense of community and caring shared by people who are "all in the same boat". Meanwhile, in the "real world" I am feeling more like the folks in "Animal House" that are led to a sofa reserved for social outcasts.

 

I now realize that music therapy is perfect fit in the palliative care model as it clearly improves quality of life, One of the major reasons is the acceptance and unconditional love we experience from the group and dedicated leadership.

Memorial Service

 I attended a memorial service today for a good friend and fellow member of the Arizona Tremble Clefs, Lowell Schwalbe.  He was a good man, wonderful musician and great role model.

Our West Side Tremble Clefs Group sang two songs led by our director, Sun Joo Lee.  

We sang two songs, both of which bring back memories of another memorial service about twenty years ago in Monument, CO, A young lady who was a high school senior at Lewis-Palmer High School and her boyfriend died in an auto accident that took place on icy roads while driving to an event at University of CO at Boulder.  She attended the Church at Woodmoor with her family where I sang in the choir.  She was very bright and talented and was very well known in our community. 

The service was held at the Tri-Lakes Chapel which was chosen because it could handle the large audience that was anticipated.  Our church was asked to sing at the service.  Two songs were selected, "How Great Thou Art" and "Amazing Grace".  I was honored to be asked to be the soloist.

Today's service was both sad and celebratory.  Lowell had lived a full life and accomplished so much.  I am sorry to say that I don't remember the young lady or her boyfriend's names. Their service was made all the more heartbreaking by the fact that so much still lay ahead of them.  But while the quantity of their lives was not what any of us would have wished for them, we can celebrate and be grateful for the quality of the life they had.