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.  

Saturday, October 7, 2023

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.


Sunday, May 21, 2023

Challenges of the Changing Healthcare Landscape

 


According to a recent NY Times article (shared by Gil Thelen), primary care practices are being acquired by giant corporations/ hospital groups that now control most of the healthcare industry.  It seems that the motivation for this activity is access to patient databases as well as huge Medicare payments from the U.S. government that provide significant incremental sources of profit.

Corporations being interested in profit is not new.   However, it does give us an opportunity to “read the tea leaves” to prepare for any impact on PDPC.  In my opinion, we need to be prepared to address possible profitability ramifications of PDPC.

The pursuit of profit takes place in the context of the organization’s strategic plans.  Many industries, including healthcare, are using TQM (Total Quality Management) as a framework for achieving a balanced business approach.  With TQM, the primary goal is to build loyalty by consistently meeting/exceeding customer expectations. To do this, creative and innovative planning is required.  Effective execution of those plans involves commitment (ongoing focus on the primary goal by the entire organization), accountability (quantifying the degree to which

the primary goal was met), and continuous improvement (ongoing commitment to TQM). 

Reference:  Frontiers | The impact of integrated quality management-based health services on general hospital quality (frontiersin.org)

 

Medical organizations have become increasingly competitive.  They will have to generate an acceptable level of profit to survive.   But to survive and, better yet, thrive they will need to look beyond profit.  They can be sure that their competition will be doing that.  Continous Relationship Management (CRM) that builds loyalty at the individual consumer level is now possible due to advances in computer technology. 

Reference:  Corporate Giants Buy Up Primary Care Practices at Rapid Pace - The New York Times (nytimes.com)

 

I can’t think of a better way to build consumer loyalty than a unique individualized program that goes beyond standard care and exceeds patient expectations by taking a holistic, team-based approach that focuses on quality of life for patients, caregivers, and families.  This is a value-added service that is not widely available.   If it is delivered in a TQM/CRM environment it is not only consumer-centric, but it may also offer a significant competitive advantage.  The clear preference shown for PDPC in our first study is a good indication of what can be expected.

The cost of delivering this service is a factor that must be considered.  With that in mind, it would be useful if the value of PDPC could somehow be quantified and compared to the cost.  Of course, the value can’t be measured in dollars and cents.

Monday, May 15, 2023

A Parkinson Advocate’s WPC Memories

 

             

My advocacy journey started in the fall of 2011 when I gave a presentation on deep brain stimulation at a senior living residence facility in Colorado Springs.  I was the only “non-medical professional” presenter.   When I spoke, the audience seemed to be more “engaged”.  It could have been the topic, but I got the distinct feeling that I was an anomaly because I was their first “patient presenter”.  They seemed to listen with “different ears”.  I got a lot of positive feedback that encouraged me to do more.

I had heard about the 2010 WPC in Scotland from Kate Kelsall and Valerie Graham who I had met at a DBS information meeting at the Parkinson Association of the Rockies in Denver.  They had received financial assistance that enabled them to attend.  They were almost breathless with excitement when they returned and shared their experience with me.  So, when the 2013 WPC site in Montreal was chosen, my care partner/wife (who turned out to be my advocacy partner as well), Linda, and I decided to go.  We had recently attended a Parkinson Disease Foundation (PDF) Parkinson Advocate in Research (PAIR) training program, so we were psyched up and ready to go.

We arrived in Montreal a day early to participate in meetings with doctors to discuss key topics like DBS, Cognition/memory issues, etc. as part of a patient-centered initiative by PDF.  This was a first and reflected a major topic at this congress which was all things patient-centered/patient-focused.  This included not only treatment, but also pursuit of patient input and involvement on many levels!  I have referred to this development as a “big bang” event when the PD world recognized that patients and caregivers should be central to healthcare planning including their needs, wants and knowledge.  They should also participate and provide feedback in research, the idea being that these folks are the ones who live with this disease.  This puts them in a unique position that has value!

I became conscious of the “we” aspect of being a PwP at Montreal, which I would describe as a sense of community among PwP’s and care partners.  They build and renew relationships that produce a “culture of caring” that is palpable.  There is also an opportunity to get to know doctors and researchers through presentations and individual interactions that can stimulate learning and build networks.  For example, I attended a presentation by Dr, Janis Miyasaki who I had learned was involved with development of palliative care for PwP’s.  I had an opportunity to speak with her afterwards, beginning a relationship of mutual respect that blossomed into another “big bang” moment, the genesis of an international consortium to explore and develop PD palliative care as well as PCORI-funded research and implementation that continues today.

I left Montreal feeling extremely motivated, energized and full of ideas!  I did a major rewrite of a book I had been working on for the last two years.  My “advisors” were very pleased, and it was published!  In the months that followed, my advocacy work accelerated.  A talented friend helped me create a “patient perspective” website and blog (which became one of Healthline’s Top 10 PD blogs for five years) with a new “Shaky Paws Grampa” brand and logo, and a PD Facebook page.

In the years following the Montreal WPC, PD palliative care, which was a great fit with the “patient-centered” movement due to its focus on quality-of-life improvement for PwP’s, care partners and families, took shape.  As the 2016 Portland conference approached, PD palliative care (PDPC) was on the docket.  It was the thrill of a lifetime for me to be included as a presenter on this subject as part of a panel led by Dr. Benzi Kluger (my movement disorder doctor since 2009 who had become my PDPC colleague).  This gave me an opportunity to provide a patient perspective on PDPC that was well received and that became the subject of a published paper.  Heady stuff!  Research supported the value of PDPC and led to training and implementation of PDPC at the Parkinson Foundation Centers of Excellence in the U.S.  For me, this all started in Montreal and felt very much like a “God thing”.

In addition to being a presenter, I was more involved with WPC 2016 as a “Blogger Partner”.   This gave me an opportunity to many of my advocacy colleagues for the first time, as well as Executive Director Eli Pollard who has played a major role in the growth and success of this enormous event!  I have appreciated and valued my interaction with Eli during the subsequent years.

As a side note, singing was very important to me prior to my PD diagnosis in 2008.  I learned that my singing voice was likely to suffer (as it later did in the much more noteworthy cases of Linda Ronstadt and Neil Diamond).  I joined a vocal rehab group in the Phoenix area in 2016 after acquiring a “snowbird condo” due to a confluence of good fortune and my growing problems dealing with winter in Colorado.  WPC 2016 provided me an opportunity to sing with the WPC choir at the opening ceremony.  My voice has continued to deteriorate in the years that followed.  However, it has been slowed by my participation in Tremble Clefs  (TC) while I have been blessed to be able to experience the joy of singing with fellow PwP’s and care partners who have become “near and dear” to my heart.  I am committed to helping the TC concept flourish and grow.  This goal is shared by our TC Director, Sun Joo Lee, who has an undergrad degree in voice and music therapy.  She has taken her commitment to another level by pursuing a Ph. D. in music therapy at the University of Iowa.  The subject of her dissertation will be Tremble Clefs.  God continues to bless me.  Hot off the presses, I just received this exciting information:

Arizona Tremble Clefs has been selected to receive a Congressional Recognition Award from Congresswoman Debbie Lesko, US House of Representatives 8th congressional district, for their contributions to the Arizona Parkinson’s community.  

Gradually, in the years following WPC 2016, I became aware of changes that led to some tough choices.  My speaking skills were deteriorating, my ability to think clearly, especially under any kind of pressure, was declining, and my memory was unreliable.  I was not meeting my own expectations for managing my website. New blog articles were few and far between.  With regret, I shut down my website and PD Facebook page, out boarded my blog, and stopped making advocacy presentations to support groups.  I chose to limit my advocacy involvement to the remainder of my PDPC commitment and Tremble Clefs.  I decided that I would not attend the 2019 Kyoto WPC.   

All our lives were disrupted by the pandemic during 2020-21.  2022 was a mixed bag and it officially ended in May 2023.  My AZ TC group lost many members and is just regaining its momentum this year.  The 2022 Barcelona WPC had to be postponed to July 2023.  I really wish I could be there, but I am sure it will be another big success and create many lasting memories!

 

Tuesday, April 4, 2023

Update on CND Life Sciences

 

My last blog article (An Exciting New Diagnostic Tool) talked about a new PD-related R&D company named CND Life Sciences that has created a skin biopsy test that detects the presence of alpha-synuclein, a mis-folded protein that has been a major target of PD research.  The first article was written before I had the Syn-One test, a minimally-painful series of three skin biopsies (back of neck, thigh, and lower leg).  My reasons for taking the test are below.

Personally, I want to know what I am dealing with so I can seek appropriate treatment and make informed choices for my future.  While this is not an endorsement, it is a recommendation for Movement disorder doctors, Palliative care teams, PwP’s, care partners and their families to research this new development.  For further information, visit CND LIfe Sciences - Home of the Syn-One Test™.

I received a report a few days ago with the test results.  The bottom line was that I had “abnormal” results from two of the three biopsies (neck and thigh).  Alpha-synuclein was detected in both locations.  Also, nerve fiber density was abnormal in both the thigh and lower leg biopsies.  Of course. “abnormal” is never good news, but it was a big step forward in three regards:

  •    I  It was consistent with the PD diagnosis I first received fifteen years ago.  There was no testing available at that time to confirm my diagnosis.  This is a big deal for those who are newly diagnosed!
  • The results were not consistent with a lewy body dementia (LBD) diagnosis.  Actually, it does not confirm dementia with lewy bodies diagnosis (DLB).  LBD has two subcategories which are DLB and PDD which are basically the same except DLB occurs at or close to diagnosis and does not always include PD whereas PDD occurs later in the course of PD.  (Confusing, I know!).  It is helpful for me as it at least rules out DLB (I am told), though symptomatically it amounts to the same thing.  I am told that research is being done to identify PDD.
  • The abnormal nerve fiber density results confirm my somewhat tentative observation/diagnosis of neuropathy which is definitely helpful.

Once again, I encourage patients who are dealing with confusion around any of the five neurodegenerative diseases included in the Syn-ONE test (including PD and LBD) to tell your doctors about CND Life Sciences.  You may have to push back some if they minimize the idea without looking into it  We all do that occasionally.

Wednesday, May 11, 2022

An Exciting New Diagnostic Tool

 

Parkinson’s is a neurodegenerative disease characterized by abnormal misfolded protein known as alpha-synuclein.  It is one of a group of disorders known as synucleinopathies.  Accurate diagnosis of any of these diseases, especially in the early stages, is challenging which can result in misdiagnosis.

CND Life Sciences has developed a new diagnostic tool called the Syn-One Test™ that accurately detects and visualizes abnormal alpha-synuclein in cutaneous nerve fibers.  The synucleinopathies encompass a group of neurodegenerative diseases that include:

·         Parkinson’s disease

·         Dementia with Lewy bodies

·         Multiple system atrophy

·         Pure autonomic failure

·         REM sleep behavior disorder

An abnormal test that identifies phosphorylated synuclein (p-syn) within cutaneous nerves is highly specific for a diagnosis of a synucleinopathy, but cannot distinguish between the synucleinopathies. Physicians should use the results of the Syn-One Test along with other clinical features to help make a more specific diagnosis.to help avoid sub-optimal care recommendations and poor outcomes.

 

Personally, I want to know what I am dealing with so I can seek appropriate treatment and make informed choices for my future.  While this is not an endorsement, it is a recommendation for Movement disorder doctors, Palliative care teams, PwP’s, care partners and their families to research this new development.  For further information, visit CND LIfe Sciences - Home of the Syn-One Test™.

Tuesday, June 22, 2021

Teaming Up for Parkinson’s Research and Care: A Patient’s Role


 Originally published 7-16

“Based on the exam, I am fairly sure that you have Parkinson’s. I can’t be 100 percent sure, as there is no test to confirm the diagnosis. There are a variety of symptoms you could experience, and no way to know how quickly it will progress. But no need to overreact there are far worse things to have. Let’s meet again in three to six months.”

 

Often times, when I meet another person with Parkinson’s, we swap our “d-day” (day of diagnosis) story. And they usually sound something like mine: after experiencing a myriad of symptoms (dizziness, stiffness, fatigue), we go from doctor to doctor seeking answers, until one day, one of those doctors says the words above. We leave the office not knowing much about our disease or how to manage it. That’s what happened to me.

 

As a newly-diagnosed person with Parkinson’s, life seemed daunting. But eight years later, as an informed patient advocate, I am working with researchers on a three-year site clinical research study (funded by PCORI with $1.5 million) investigating how palliative care can make life better for patients and caregivers.

 

Here’s how it happened and why it matters to research.

 

Shared Concern and Shared Passion for Palliative Care

Luckily, soon after my diagnosis, I was referred to movement disorder specialist Benzi Kluger, M.D., M.S. He eased many of my worries and helped me better manage my disease.

 

After getting to know each other better, Benzi and I discussed our shared frustration about Parkinson’s care. I found out that the “d-day” stories aren’t just frustrating for patients, they are also concerning for doctors who care for people with Parkinson’s.

 

Over time, as we discussed these challenges, some plans started to take shape.

 

First, Benzi had an idea for improving palliative care for people with moderate and advanced Parkinson’s. In this plan, a team a doctor, nurse, social worker and chaplain would provide care, planning and counseling services to people with Parkinson’s and care partners before end-stage disease. The team would help navigate decisions surrounding end-stage care, helping to ease angst and heartache.

 

Second, in addition to providing feedback on Benzi’s plan, I put together another one for the earlier stages of Parkinson’s a plan to improve the “d-day” experience so that patients and care partners could take ownership from the day of diagnosis onward.

 

Together, we sought to better support those living with Parkinson’s, at all stages.

 

Working Together

At around the same time, through my work as a trained Research Advocate with the Parkinson’s Disease Foundation, I heard of opportunities to apply for research funding from the Patient Centered Outcome Research Institute (PCORI).

 

After speaking to Benzi about this news, he put together a proposal (which I reviewed) asking for funding for the first national Parkinson’s palliative care clinical study.  

 

A few months later, it was approved for $1.5 million! Now, we are working on a three year research study to understand how palliative care might improve quality of life for patients and care partners. Not only that, we are involved in other initiatives surrounding palliative care in Parkinson’s. For example, Benzi organized the first international PDF conference on palliative care in Parkinson’s, where I presented my insights in front of leading scientists. I’m happy to say those scientists not only listened to my insights as a patient, they also heard them and used them to move ideas forward for improving care.

 

Lessons learned

What’s the moral of the story? As patients, we may not realize that we have the opportunity to provide meaningful input to researchers. But we do.

In fact, soon after my own diagnosis, both Benzi and the team at the Parkinson’s Disease Foundation told me something that as a person living with PD, I was an important member of the Parkinson’s research community.

I wasn’t sure what this meant at first. But now I do.

 

And I would go a step further. I would say that we as patients not only have the opportunity to advise researchers, we have an obligation to do so. Researchers need to be sure they are searching for answers to the right questions. In order to do that, they need to understand what is important to us, the patients.

No matter how astute they are, researchers (in most cases) don’t know what it is like to live with Parkinson’s. I don’t have Benzi’s expertise and he doesn’t have mine.

But together we have both. If we are ever going to improve lives and end Parkinson’s, from diagnosis forward, we need scientists and patients on the same team.

Kirk Hall of Highlands Ranch, CO, is a Research Advocate with PDF who participated as part of the faculty for the inaugural PDF “Palliative Care in Parkinson’s Disease Conference” held last October in Denver.  He also coordinates the patient/caregiver advisory council for Dr. Kluger’s PCORI funded study, “Does Outpatient Palliative Care Improve 

Monday, June 21, 2021

Balance: An Important Component of Wellness

 


Written in early 2016 


As a blogger partner for the upcoming World Parkinson Congress that will be held September 20-23, 2016 in Portland, OR, I have been asked to write a series of articles on subjects relevant to Parkinson’s.

Wellness is a subject that gets a great deal of attention in the PD world, and rightly so.  There are a variety of “wellness categories”.  Physical wellness with a focus on exercise and nutrition has been discussed and researched in detail by organizations such as the Davis Phinney Foundation and Brian Grant Foundation.  Cognitive wellness, a topic that is intuitively relevant with Parkinson’s, has not been widely researched but has received attention in journals.  Other intuitive categories include psychological, relational, spiritual, financial, and personal (clarity around individual preferences), all relevant to current research in which I am involved regarding PD Palliative Care.

The focus of this article is the need for balance (somewhat ironic in that lack of “postural stability” is a one of main motor symptoms of PD).  What I have in mind, specifically, is balance in “engagement”.

In discussions with support groups, this is a topic I always emphasize.  One of the biggest problems PWPs and care partners face is apathy (under-engagement).  My experience is that identifying and engaging “passions” can help overcome this problem.  In my own case, I realized a couple years after diagnosis that the best way for me to “climb out of my funk” was to devote more time to helping others (as written in by PD book, Window of Opportunity: Living with the reality of Parkinson’s and the threat of dementia).  This decision was a major turning point in fight against PD that changed my life in ways I could not have imagined!  Without going into detail, let me just say that I have been abundantly blessed with many opportunities, very nearly all of which I have engaged.

As time has gone by, my PD has inevitably progressed and my abilities have changed.  Also, my “life priorities” outside PD (something to which we all need to pay attention) have evolved.  My commitments in the PD world are hugely important to me, but I am beginning to realize that my commitments to my family and related life decisions are at least equally important.  This is not easy for me to accept. 

An analogy that comes to mind relates to my participation (with my wife and family) in the Bolder Boulder, an annual 10k fundraising event we have entered the last few years.  I noticed this past year that, after walking (I am not a runner anymore) at a brisk pace (with the help of walking poles) for six miles, after I crossed the finish line I had a very hard time slowing down.  My body wanted to, but my brain wouldn’t let me.  I have seen this in friends with advanced PD and learned that it is called festinating gait (a manner of walking in which a person’s speed increases in an unconscious effort to “catch up” with a displaced center of gravity).

Similarly, my involvement in the PD world has developed a degree of momentum, making it difficult for me to “slow down”.  My head tells me I will have to but my heart doesn’t want to listen.  As a result, I am wrestling with the potential for over-engagement in the PD world (if I am not already there) at the expense of other life plans that are taking shape.  All of which reinforces the need for balance.

Easier said than done.

 

Tuesday, May 18, 2021

Thanks For The Memories

 

Thanks For The Memories

 

I wanted to let it be known that I will be shutting down

my Shaky Paws Grampa website in the near future.  This includes my blog which I started on blogspot in 2011.  My son and daughter-in-law have helped me to restart the original blogspot site so those will not be lost.  All those written since the website was created (5 years ago?) I have been able to save the rest on my google drive.  I have lost count of how many there are.  I was honored to have my blog listed as one of the Top 10 PD Blogs for 2015-2018 (I think) by Healthline.

My friend Rich Carnahan helped me create the website during 2014 (again, I think).  It was something I never would have even thought about doing if not for his generous offer.  Thanks Rich!!  My goal was to create a “patient perspective” website that would inform and encourage my fellow PWPs and other interested parties.  It brought me in contact with many organizations and individuals that gave me opportunities to try to be helpful, which is all I could have hoped for.

I felt that it was important for me to make this decision and not leave it for someone else to deal with in the future.

Thanks to everyone who visited my site over the years.  It is just one more example of the many ways I have been blessed in my PD journey.