PD & Heart Disease

 

I was diagnosed with PD in 2008.  After spending a couple years learning about the challenges of living with this disease, I decided to devote myself to helping patients and caregivers by sharing what I had learned.  It seemed to me that many people were rather passive in their approach to management of their PD, not becoming actively engaged.  As a moderately well-informed fellow patient, I thought there was at least a chance that there might be interest in what I could share with them.   I have been a PD Advocate since 2011 when I wrote my first PD-related book. Since then I have done presentations to support groups as well as regional and national PD organizations, written more books, become a PD blogger, created a patient perspective PD website and helped develop and implement PD Palliative Care.

Like everyone with PD, there have been many chapters in my story as the disease evolved over 16 years and I adjusted to the “new normal.”  I was fortunate to be blessed in many ways along the way, including having my wife, Linda, as my caregiver and partner, Dr. Benzi Kluger as my MDS and colleague, and guidance from my faith.

I was dealing with some problems during the pandemic and made a trip to Gainesville to meet with Dr. Michael Okun, Parkinson Foundation Medical Director at UF.  Add another blessing to my list! It became clear that I was under-medicated.  For the next three years I worked with my University of Colorado MDS to find a solution that proved to be elusive.

This brings us to early 2014.  I had taken a bad fall at a restaurant in AZ due to floor that was wet from rain.  The next day I was at a follow up appointment with my AZ primary care doctor where my wounds from the night before were checked. For some reason (I have to call it God’s Grace), she put her hand on my chest and, after a moment, told me that I had a heart murmur.  She scheduled an ECG to check it out.  When the test results came back she called to tell me that I had severe aortic stenosis (AS) and needed to meet with a cardiologist ASAP. I realized that many of the AS symptoms were the same as my PD symptoms (fatigue, dizziness, shortness of breath, and stamina), all of which had gotten worse and, as time went by, were joined by chest pain. I didn’t realize that there was another problem with potentially more severe short-term consequences.

It didn’t take long for my research to confirm that this was a serious situation. Unfortunately, I ran into problems finding a solution in Denver. I had my first appointment with Aurora Denver Cardiology Associates in July and was pleased by my initial impression that their team was well-suited to my needs and understood the urgency of my situation. They were prepared to do the testing that is required to substantiate the need for a procedure called Transcatheter Aortic Valve Replacement (TAVR), which is very desirable because it is non-invasive and has a very short recovery time.  I am now approved for this procedure and am more optimistic about my future quality of life than I have been for years.

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 Boxing, yoga, 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.

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

• How "Carson And His Shaky Paws Grampa" was "born"

• How "Carson And His Shaky Paws Grampa" was "born" (cont.)
• About Carson
• Carson & His Shaky Paws Grampa Press Release (http://shakypawsgrampa.blogspot.com/2011/10/carson-his-shaky-paws-grampa-press.html)
• Writing a Memoir
• Carina And Her Care Partner Gramma
• CARINA BOOK
• Carina and Her Care Partner Gramma Press Release
• CARINA AND HER CARE PARTNER GRAMMA: Note to Readers
• Carson And His Shaky Paws Grampa book review
• New Book Release: WINDOW OF OPPORTUNITY
• WINDOW OF OPPORTUNITY UPDATE
• Window of Opportunity book now available
• The Story Behind The Writing Of "Window Of Opportunity"
• Keeping A Journal
• Window of Opportunity excerpt
• Update on the response to Window of Opportunity

 

PD-related information

• Exercise and PD
• Information Regarding Essential Tremor
• Deep Brain Stimulation
• Fatigue and Parkinson's Disease
• Parkinson's and Stress
• Shaky Paws Top 10 Recommendations for PWP's
• Shaky Paws Top 10 Recommendations for Care Partners
• Parkinson's Programs for the Artistically Inclined
• Driving and Parkinson's: Balancing Independence With Safety
• Focused Ultrasound Technology: An important development
• PALLIATIVE CARE AND NEUROLOGY: Time for a Paradigm Shift
• PARKINSON EXERCISE ESSENTIALS: A New Program from the Davis Phinney Foundation
• A Tribute to Care Partners
• Parkinson's Resource List Update
• PRACTICAL IDEAS FOR DAILY LIVING WITH PARKINSON'S
• How Doctors Choose To Die

 

Clinical research study advocacy/participation

• PDF Learning Institute Invitation
• Clinical Research Trials: A Critical Opportunity For All PWP's
• Brain Donation
• DENVER CLINICAL RESEARCH FORUM
• Clinical Research Forum Announcement
• PATIENT-CENTERED RESEARCH INITIATIVES

 

Cognition issues

• Parkinson's and Dementia

• The Elephant in the Room: My Story
• The Elephant in the Room: Choices
• The Elephant In The Room: Snapshot
• An Underaddressed Problem
• Notes from the Twilight Zone
• Notes from the Twilight Zone: Mountain Climbing
• Notes From The Twilight Zone: Dementia--A difficult but important subject
• Notes From The Twilight Zone—I Am Not Alone
• NOTES FROM THE TWILIGHT ZONE: Some Times You Feel Like A Nut

 

Living with PD-personal

• Having Parkinson's Isn't All Bad
• Grampa Music
• Living In The Moment
• The Rest of the Story
• New Beginnings
• Angel's Wings
• Making Memories
• Go For It
• Angel's Wings II
• Go For It 2

 

PD meeting/conference information

• World Parkinson Congress Highlights
• Parkinson's Global Community Conference
• UPCOMING PD EVENTS IN THE DENVER AREA

 

SPG speaking engagements, media interviews, and webinars

• KOA Radio Interview
• Shaky Paws Newspaper Interviews and Book Reviews
• Shaky Paws Grampa was featured in the Denver Post!
• Shaky Paws TV feature and interview
• Presentation at PAR Triumph Breakfast
• Shaky Paws On YouTube
• National Family Caregivers Month Interview
• LBDA WEBINAR: Living with LBD: The Firsthand Perspective
• Parkinson's Article In The Denver Post

 

Calls to action

• 18th Annual Parkinson’s Unity Walk
• 2012 PAR Vitality Walk
• 2013 Parkinson Vitality Walk
• April is Parkinson's Awareness Month!
• Parkinson Association of the Rockies Vitality Walk
• Are You A Parkinson's Warrior?
• Personal

• In My Opinion
• A Tribute to Howard

 The Voice of One

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.  

The philosophical role of illness - and how it can teach us to live reflectively

 Reprinted from The Conversation (published 4/6/2016) by permission:

 

Serious illness is a great calamity. It is unwelcome, violent, frightening and painful. If it is life threatening, it requires the ill person and their loved ones to confront death. Illness causes pain, anxiety, incapacitation; it limits what the ill person can do. It can cut a life short, stop plans in their tracks, and detach people from life, suspending the previous flow of everyday activity. In short, illness is almost always unwelcome but must be endured, as it is also unavoidable. We “each owe nature a death”, as Freud put it.

But illness also has revelatory power. It pushes the ill person to the limit and reveals a great deal about us, how we live, and the values and assumptions that underpin our lives. Illness can also provide both philosophical motivation and instruction, by pointing to our habits and assumptions and putting them into question. So we should consider illness as a legitimate and useful philosophical tool.

What kind of a philosophical tool is illness? First, illness uncovers aspects of embodied experience with tremendous force. It shows us the frailty and failure of the flesh, revealing dimensions of human existence that are both tacit and surprising. Illness is therefore an opportunity for us to reflect on the nature of such bodily existence, its limits, and how it conditions our lives.

Second, illness is (at present) an integral part of biological life and so must be taken into account when considering human life, values, meaning and social arrangements. We are all destined to die, and most of us will fall ill (or are ill) in the process. This is a significant fact about human life that both structures and delimits it.

Third, illness has what I call a ‘distancing effect’. It withdraws us from previous habits, routines and practices, which become impossible in illness, and forces us to reflect on those habits and practices. Illness can destroy the expectations we have about our life, such as assumptions about how long we might live and how independent we should be, and in this way reveals the values we take for granted, many of which are only articulated explicitly when one falls ill.

Reflective living

In short, illness leads us to question how we live, why we live as we do, and how we might continue to do some things within the constraints of illness. Illness is a challenge, a demand, that requires a reflective response. Illness radically changes our relationship to our body, environment, and social world.

It changes our attitude towards time and the future. It often forces us to consider what is important and what is trivial. It can furnish us with new clarity and focus, and it can lead us to appreciate things we were previously too busy to notice. As such, illness can awaken reflection in the ill person simply by forcing change on that person. This reflection is, simply put, philosophising.

So, for me, illness is a unique form of philosophising. We normally think of philosophising as a chosen activity, not something that can be forced on someone. But in the case of illness, the ill person is thrust into great uncertainty, anguish, incapacity, and anxiety and these may lead that person to ask philosophical questions about justice, luck and misfortune, autonomy and dependence, and about the meaning of their life.

Illness is a violent invitation to philosophise. It arrives, unwelcome, wreaking havoc on a previously ordered life, and throws into the air many of our assumptions and ideas about what our life could and should be like. As such, it may be an effective philosophical tool that can yield important insights. Illness can call for more radical and personal methods of doing philosophy. It can affect the philosophical concerns of the ill person. It triggers reflection on finitude, disability, suffering and injustice. It can also change the urgency and salience of particular philosophical topics.

Of course, illness won’t do this in every case. If the illness is too painful or debilitating, there is no room for reflection. If the sorrow and trauma are too great, there can be no “post-traumatic growth”, as psychologist Jonathan Haidt calls it. But in other cases, illness can be a transformative experience, as philosopher L.A. Paul defines it. It can alter what we know and what we value in ways that are deeply life changing.