Sunday, September 1, 2024

The Benefits of Engagement



First and foremost, when you are engaged, you don’t have to worry about finding a date. Linda and I got engaged in 1968, before the internet, credit cards, cell phones, microwave ovens, HDTV’s, GPS, and Alexa! Try to imagine a date now without these “necessities”. We did, however, see some beautiful sunsets!

But that is not the type of “engagement” I want to talk about today. Engagement in this context refers to the interaction between a PWP (person with Parkinson’s) and the world around them. There are many different types of engagement including physical, mental, social, hobbies/passions, and spiritual (some of these overlap).

Types of engagement

Physical engagement refers primarily to exercise, which is a proven way to slow Parkinson’s disease (PD) progression. Do as much as you can SAFELY! Consult your neurologist about what and how much exercise is right for you. There are classes available in many parts of the U.S. for PWPs and care partners including Rock Steady Boxingyoga, dance, and basic exercise. Walking is a good basic exercise. The idea is to get up out of your chair and move around as you are able.

Mental engagement can include reading, writing, watching educational programs on TV, doing puzzles or games, singing, participating in sports, discussing world events and much more. The goal is to maximize neuroplasticity for as long as possible.

Hobbies/Passions are a type of engagement I like to highlight for a number of reasons. They involve physical and/or mental engagement as well as social engagement in some cases (sports, music, dance, board games and much more). By definition, they involve activities that are personally enjoyable. We are all more likely to engage in activities we enjoy as opposed to things we have to force ourselves to do. At the risk of getting “into the weeds”, these types of activities often result in the production of endorphins which can have a very positive effect.

Spiritual engagement is important to many, but not all, of us. For those to whom it is important, this can involve active participation in their faith and related activities such as prayer and attending a place of worship. For others, there is a belief in a “higher power” they experience through nature, music, art, or meditation. If it is important to the individual, it is a good thing to maintain that connection.

My personal favorite: Altruistic engagement

There is a tendency for patients to become depressed and withdrawn as PD progresses leading to faster decline. Engagement can help PWP’s fight off two very common problems – apathy and depression. I have a personal favorite based on my own experience that I call altruistic engagement which involves trying to make a difference in people’s lives. It was my faith that led me in this direction when I realized that I was experiencing apathy and depression due to spending too much time thinking and worrying about myself. Consider options like participating in clinical research studies, brain donation, writing a blog, assisting with a support group, or something as simple as spending time with someone who is struggling.

Think about what engagement should look like for you. Enlist your most important asset, your care partner, to help with this. Benefits include your personal wellness, reduction of stress for your care partner, and peace of mind for your family.


Tuesday, August 20, 2024

Shaky Paws Grampa Blog: Together Again

 I created a “Shaky Paws Grampa” patient perspective website in 2014 as a resource for patients, care partners and families as well as a source of insight for others with interest in PD.  I made a decision to discontinue the website, as well as my PD facebook page, in 2021 because I was no longer able keep them up to date due to disease progression and I was not comfortable with the possibility of providing outdated or inaccurate information.

One of key elements of the website was my SPG blog, We ran into some technical difficulties in moving the blog and, by the time I got back to it, someone had bought the rights to “shakypawsgrampa.com”, obviously an opportunistic purchase because it was getting a high level of response.  Sure enough, they tried to sell it back to me at a higher price. I was not about to allow their subterfuge to succeed, so I changed to “shakypawsgrampa.net”.  I republished what I could pull together of the original website and began publishing new posts.

I have recently discovered a page from the website that listed links to the original blog and am reprinting it here, The combination of this list and the current shakypawsgrampa.net blog should contain all posts I have written since 2011.

Book or writing-related

 

PD-related information

 

Clinical research study advocacy/participation

 

Cognition issues

 

Living with PD-personal

 

PD meeting/conference information

 

SPG speaking engagements, media interviews, and webinars

 

Calls to action

 The Voice of One

Monday, July 22, 2024

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.


Tuesday, May 28, 2024

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.

Wednesday, January 17, 2024

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.