Evolution of a Patient Perspective Palliative Care Model

5-18-2021

 

I have been asked what motivated me to write the paper that outlined this model.  It took me a while to piece it together, but here is the answer.

My recollection is that it was early in 2013 when my Parkinson’s movement disorder neurologist, Benzi Kluger, and I had a conversation about a man we both deeply admired, Dr. Tom Graboys.  Graboys had recorded his thoughts and reflections on his life before and after being diagnosed with both Parkinson’s and Lewy body dementia (Life in the Balance).  We were talking about how Graboys related to his patients and his concern about how doctor/patient communication seems to have lost the personal element that he thought was so important.  I told him I thought that many patients miss that “Welby-esque” relationship that provided valuable information to doctors that couldn’t be found on their charts.

Within the next few months, Benzi started a PD palliative care clinic at the University of Colorado Hospital in the neurology department, the first of its kind in the U.S.  He also wrote a paper about a new PD palliative care paradigm and developed a presentation for both patients and the medical community, which I had the opportunity to attend.

During this time I was working on a book about my personal experience with Parkinson’s related cognition issues and Benzi agreed to be my “medical consultant”.  I wrote a chapter on palliative care that felt important.  We both attended the World Parkinson Congress in Montreal that year.  We talked about the great presentations on the need for more emphasis “patient-centric” research including patient involvement, something that I knew fellow Persons with Parkinson’s (PWPs) found very motivating.  During Christmas week we met to discuss the finishing touches on my book as well as an idea he had for PD palliative care research.  His focus for the research, which reflected the work of his palliative care clinic, was the middle to later stages of disease progression.  I mentioned that, since palliative care is meant to impact all stages of PD, I would like to work on a model for PD palliative care.  This model would touch on all stages of the disease, but would pay particular attention to pervasive concerns of patients and caregivers starting at diagnosis that related to the “Welby-esque” topic we had talked about months ago.  In this way, perhaps we could generate a few ideas for “quick wins” that would benefit the PD community in the near future.

As 2014 progressed, things started falling into place.  I was on a national call that PDF had as part of their PAIR program with the Patient Centered Outcome Research Institute.  We were brainstorming ideas when I asked if they were funding research on palliative care, which they were, but none related to PD at that time.  I contacted Benzi with this exciting news and learned that he was already working on a proposal.  Of course, I expressed my interest in being involved.  We agreed on a target date for submission of a proposal.

The rest is history.  A proposal was submitted and PCORI offered a $1.5 million grant for a three year multi-site study.  Benzi asked me to put together a patient/caregiver council to provide input and feedback at all stages of the study.  We now have a team of nine members including patients and caregivers with experience that covers the spectrum of PD.  We had our first teleconference the end of September 2015 and PDF offered to fund a first PD Palliative Care Conference that would take place in Denver only a couple weeks later.

I was excited to learn that Benzi would like to have a patient/caregiver presentation early in the program, which would be attended by individuals who had significant with palliative care all over the world.  I knew immediately that I would like our topic to be the “model” I had been working on since 2014.  With the help of friend and colleague, Gil Thelen, I was able to put the finishing touches on the proposal.  Our entire patient council participated in the presentation, which included personal stories that demonstrated the need and potential impact of PD palliative care.  We were deeply gratified by the generous praise and appreciation that was expressed by the conference attendees!

An updated version of the Patient Perspective Proposal for PD Palliative Care will be the focus of a presentation I have been invited to give at the World Parkinson Congress in Portland this September.  This update can be viewed at http://www.shakypawsgrampa.com/index.php/new-blog/entry/updated-patient-perspective-proposal-for-pd-palliative-care

How I Became a Parkinson’s Advocate

 

 5-18-2021

I never had a plan to become an advocate.  A couple years after I was diagnosed in early 2008, I realized I was spending too much time worrying about myself and what the future would hold for my wife and me.  Actually, I had been thinking and praying about this when the doorbell rang.  It was a friend from our church dropping off a “prayer blanket” to provide comfort in my “time of need”.  I was blown away by this thoughtful gift as well as the timing.  There are many examples of this sort of thing happening in my life that might be thought of as coincidental.  I believe otherwise.

The first thing I did was sit down with that blanket and give thanks to God.  Then I prayed for everyone who had been supporting me and Linda, as well as those I knew of who were in need themselves.  I resolved to “give back” by spending more time thinking about, praying for, and trying to help others in any way I could.

Since I had been spending so much time learning about PD to try to help myself, I realized I was in a position to share that information with others.  Since then it has occurred to me that so much of what I had done in my business career had prepared me for the work I now chose to undertake.  Another non-coincidence (ANC).  Although I had never written anything but letters, school papers, strategic plans, and business reports, I was inspired to write a children’s book for my grandchildren based on an exchange with them about my “hands shaking”.  Since I was unprepared for this, I said “Grampa just has shaky paws”.  There were four of them, ages 3-7 at the time.  They seemed satisfied with this answer.  I wrote the book, Carson and His Shaky Paws Grampa” as a gift to them.  A shared it with a neighbor who is a retired elementary school librarian (ANC) on a whim.  I was surprised when she told me it would make a great picture book and that there was a need for books that could be used to help parents and grandparents communicate with children regarding serious illness.  Without knowing what I was doing, I made connections with an illustrator who was also a PwP (ANC) and found a publisher who made me an offer!  The last part of the book had to do with the impact that DBS surgery (this happened between starting and finishing the book) had on me (no more shaky paws!) and my relationship with my oldest grandson (ANC).

This innocent little book led to speaking opportunities with support

groups that allowed me to share what I had learned about PD and my

DBS experience.  They had never had “one of their own” do

a presentation for them and it was clear that they found it

interesting on a different level than presentations by medical

practitioners.  After doing more of these in the Denver area, I

was asked by the DBS manufacturer (Medtronic) to do presentations

in Phoenix.  This led to an interview about the book and PD with Fox

News there.  This led to a keynote speech for Parkinson

Association of the Rockies, more interviews, lots more

presentations and a second children’s book.

Making Memories II

 

5-18-2021

In December of 2011 I wrote an article on my blog titled Living in the Moment.  It is interesting for me to read my writing from years past.  I sense creativity and intellectual “nimbleness” that is now much less accessible.  I remember that the pastor of our church actually read it to our congregation.

In June of 2012, I wrote a sequel of sorts to Living in the Moment titled Making Memories after we had taken a family vacation to celebrate our older son’s 40^th birthday.  We have many good memories from that trip.

It is now June 2018.  Linda and I had talked about putting together a summer family vacation as we celebrate our 70^th birthdays and approach our 50^th wedding anniversary (August 2019).  We actually talked about doing this in 2019, but I ended up talking her into moving it up a year.  My rationale was that after ten years with PD each year is likely to be better than the next, so it made sense to me to do it sooner than later. 

We asked our boys for ideas on a location and did a good deal of research ourselves based on the kinds of things we enjoy.  We were looking for someplace “special” in the mountains or by a lake with plenty of elbow room for our “tribe” that now numbers twelve, including three boys (10-14) and three girls (11-12), as well as lots of fun things to do.  We looked at some great possibilities in Colorado, Montana, and Wyoming before deciding on a “cabin” that sleeps up to 14 people in Idaho not far from Jackson Hole.

I am really looking forward to this trip.  I am taking my older son’s advice and trying not to “overthink” it, which is my tendency these days.  Both boys are making it easier to do that as they have told us they will handle the planning and details while we are there.  That definitely opens the door for Linda and me to be able to “go with the flow” and enjoy our time together.  I hope this trip will be memorable on many levels for all of us!

We are fortunate to be able to do a vacation like this.  Just finding a “window” when all of us are available these days is no small task!  Spending almost a week with parents/grandparents is not necessarily something most kids would look forward to. 

I am not sure why, but our family seems to be a little different in that respect.  Maybe it is because we attended so many of our boys’ activities (soccer, football, baseball, basketball, tennis, cross country, band concerts, award banquets and more) over the years.  Not because we felt obligated, but because we genuinely enjoyed being there.  Some families are not this way, which is something Linda and I could never understand.  We are happy to see that our boys are the same with their families.

We also made time to do things together.  We had some memorable weekend ski trips starting when the boys were “pre-teen”.  One of the things I enjoyed most about these trips was the drive to get there.  This gave me a captive audience on which to impose my “dry wit”.  I can still here the groans!  In later years, we were able to take some pretty cool Christmas ski trips to places like Steamboat, Breckenridge, Vail, Snowmass and Park City.

I can honestly say that there is a genuine “closeness” in our family.  That is something that is difficult to “manufacture”.  When I think about it, Linda and I both were raised by parents who demonstrated interest in their family’s activities over many years.  My grandparents were the same way.  We had regular get-togethers, family gatherings for Thanksgiving and Christmas and family reunions that were preserved in pictures and home movies.

 

If you already have a family that enjoys spending time together, creating memories will already be a part of your family culture.  Don’t take it for granted.  It is a precious gift!  Be intentional about keeping it “alive”.

On the other hand, if you don’t have a family that is naturally “close”, you have a bigger challenge.  As I said earlier, closeness is difficult to manufacture.  I think the first step is to communicate your genuine desire to feel close to the people you love most.  Then find ways to demonstrate your commitment to that desire.  As they say these days, “walk the talk”.  Or as they used to say, “Do unto others as you would have them do unto you”. 

As I said at the close of Making Memories, “My hope for everyone, including PWP's and care partners, is that we will resolve to do the best we can to enjoy and appreciate each day whether we are taking a walk in our neighborhood or on a remote sandy beach.  Remember to set aside some time to plan special activities you enjoy with those you love and create memories that will last a lifetime and beyond.” 

More Time II

5-18-2021 

 

This article will pick up where the original More Time left off.  I was writing about how Linda and I have chosen to use our “additional time”.          

We came up with another idea last year that I would like to share.  Since there is nothing we enjoy more than spending time with family, we decided to ask our boys if they and their families would be interested in a summer vacation with “just the 12 of us” at a place TBD.  They liked the idea, so we asked for suggestions on a location that everyone would enjoy.  One of the options that came up was the Jackson Hole (Wyoming ski resort) area.

We made a stop in Jackson (the town close by the resort) to investigate on the way up to Montana last September.  After checking out the town and resort areas, we decided to spend time in Idaho (an 18 mile drive over the pass from Jackson).  A company that rented a variety of log homes in that area showed us a number of places.  One in particular in a resort community appealed to us.  It was quite large (3 floors, 5 bedrooms, 6 bathrooms) located adjacent to the resort golf course in an area with lots of trees, fields, and ponds.  The bottom level had a bedroom with 6 bunk beds, a family room and hot tub (a place our six grandkids ages 10-14 could spend time together in their own “space”).  The adults all had king bedrooms with attached bathrooms.  On the main level was a large, fully equipped gourmet kitchen and rustic dining table perfect for our group.  The deck off this level overlooked a fairway of the golf course with ponds just beyond.

I am thrilled to be able to say that we all had a wonderful time.  We went white water rafting and hiking as a group and spent time in Grand Teton National Park and the Rockefeller Preserve, a “hidden gem” which is not familiar to many people.  We were all in awe of the many bald and golden eagles as well as osprey that were flying around our house and the ponds.  We spent time fishing with our grandchildren (something they haven’t done much if at all) in the ponds which were stocked with trout (catch and release, no fishing license required).  I was particularly happy that I did a pretty good job of keeping up (if a little slower than the rest) and was able to “stay in the moment” and enjoy my family more than I can say.

 

 

Is there something special you would like to do with your family?  Something that didn’t seem realistic or was “too expensive”?  Try asking yourself what you would do in an ideal world where there were no obstacles.  Maybe the obstacles can be overcome.  Keep in mind that PD is progressive and what may be doable today may not be doable in the future.  If there is something you would like to have happen, make a space for it!

 

  

Open letter to my future neurologist

 

5-18-2021

To my future neurologist:

The day that we meet may be a small thing for you.   You will probably be busy, and I will be one patient in the midst of many.   But I will never forget the day that I meet you.  You will diagnose me with Parkinson’s disease, you will go on with your day, and my life will be forever changed. 

 I will have been through a long process before I even meet you.  I’ll have to recognize the changes in how I am moving and feeling.  I’ll try to figure it out on my own, explain it, or reason it away.  My friends or family or other even other doctors will tell me their experiences and their explanations.  By the time I get to you, in some ways it will be a relief to have an answer.  On the other hand, it’s an answer that will change everything for me.

Please don’t try to minimize the importance of my diagnosis.  Statements like “something else will kill you first” or “there are worse things than PD” may be meant to reassure me, but please remember that at that very moment, I am realizing that I have a progressive and incurable disease.  It doesn’t really help me to know that you see things that are worse, when I am watching PD erase my vision of my future.

I am going to need to rewrite my future with PD in it.  I don’t expect you to be able to predict everything.  I do expect you to recognize the uncertainty.  Talk to me about the range of symptoms I might have.   Tell me that you and/or someone from your team are available for questions.  Tell me how to contact you.  Tell me where to seek more information.  Tell me that I am not alone.

Don’t leave me unguided in the web of contradictory information on the internet.  Give me one or two sites that you are familiar with to focus on.  Know about your local support group and tell me how to find it.   Give me a short brochure with essential information about the disease so that when my spouse or friend asks me questions that I can’t answer we can seek the answers together.

Give me more than pills and an appointment to return in three months.  Three months is an eternity in the face of so much uncertainty.  Tell me that you know I’ll have more questions and that you want to see me again soon to address them.  You might think that if you’re not going to change a medicine, then you don’t “need” to see me and I don’t “need” to see you.  But that appointment will remind me that I am connected to experts who care about me and know my disease.  

You are the expert in my disease.   You don’t know everything about it, or about me, or about how it will affect me.  I understand that it is not possible for you to know all that.  I know I’m lucky to see a neurologist; some people never do. You have a lot of demands on your time and I may be a small part of your life.  Know that you are a huge part of mine, and I will never forget the day that I meet you.

Sincerely,

Your future patient in the midst of many

Open letter to my doctor

 

5-18-2021

December 11, 2015

Dear Doctor:

It has been over 7 ½ years since you diagnosed my PD.  Since that time, I have come to appreciate how difficult it is to diagnose PD.  I know now how fortunate I was to have made my appointment with a movement disorder specialist.

On one hand, it was good to know what was causing my extreme fatigue and other symptoms.  I had been diagnosed with essential tremor in 1991 and thought my problems must be connected to that.  Since I had been assured by general neurologists at different points since then that I did not have PD, your diagnosis caught me very much by surprise.  I know you sensed my extreme anxiety at that time.  You assured me that there were “worse things than PD” and that, since my motor symptoms were mild it was possible that I might be able to live a fairly normal life, though it was hard to predict since the rate and nature of progression varies greatly from one individual to the next.   You advised me to try to not worry about it and we agreed to meet again in three months.

I want to tell you more about how my life changed during the days, weeks, and months following that appointment.  I really didn’t know much about PD when I left your office except what you told me in the few minutes we spent following the diagnosis.  I remember sitting in the waiting area trying to process what had happened before I left to go home.  I think I came to the conclusion that you were trying to minimize the diagnosis to reduce my fear and that the reality was that my life was not going to play out as I had imagined.  I called my wife, Linda, and, without saying why, asked her to leave work in the middle of the afternoon and come home as there was something I needed to share with her.  We talked about the appointment and the diagnosis, she asked questions I couldn’t answer, and we cried together.  I became committed to learning as much as I could through books, the internet, and talking to people I knew who were living with PD.  I learned a great deal during this time.  In hindsight, probably too much since the net result was increased anxiety.  Linda immediately went into denial and was convinced that there had to be some other explanation since I had been assured previously that I did not have PD.

I have had plenty of time to think about what happened at diagnosis and in the time that followed.  It is important to acknowledge that there is no way to avoid patient/caregiver anxiety at a time like this.  That said, I wish I had been given some kind of brochure that provided guidance and information that, based on input from patients and caregivers, I both wanted and needed to know.  Rather than attempting to downplay the seriousness of the diagnosis, I would have liked to hear that you will be an ongoing source of support.  If you had provided an email address and encouraged me to contact you with questions, that would have been appreciated.  At a later date, a brochure providing more advanced guidance and information for patients with more experience would have helped.

In closing, I want to thank you for everything you have done for me.  I realize and appreciate that you are committed to my wellbeing.  I hope this feedback is helpful.

Sincerely,

John Q. Patient

Palliative Care Clinical Research Study Taking Shape

 5-18-2021

On May 15 of this year I wrote an entry telling of the approval by PCORI of a three year, three site, $1.5 million PD Palliative Care clinical research grant request. The study is called "How Can Palliative Care Help Parkinson's Disease Patients And Their Family Caregivers".  Once again, the sites for this study are Denver, Edmonton, and San Francisco and 140 patients and caregivers are expected to be recruited.  I have organized a Patient/Caregiver Council with nine members whose combined experience covers the full spectrum of palliative care from diagnosis through death (to clarify, we were unable to recruit a patient who had died, but we do have caregivers who have either lost loved ones or are in end stage).

The plan is to hold an online Kickoff conference August 28 with the research team which will meet in San Francisco.  The P/C Council will join remotely from Denver.  The Council will meet with Dr. Kluger on September 22 to discuss next steps and make a presentation to the Highlands Ranch, Colorado PD support group to begin to familiarize local patients and caregivers regarding this project and who may be able to participate.

An additional development is that there will be an International Conference on Palliative Care for Parkinson's in Denver on October 3 & 4.  This was made possible by funding from the Parkinson Disease Foundation (PDF).  Attending will be the research study team from all three locations and the patient council, the Executive Director of the Parkinson Association of the Rockies (PAR), the PDF Science Director, and palliative care experts from around the world.

I know that everyone associated with this study is very excited about the potential to improve patient and caregiver quality of life by virtue of improvements to the existing system.  The patients and caregivers on the council, in particular, can see the opportunity before us and are committed to providing input that will make a difference in the lives of our PD brothers and sisters.

The Rest of the Iceberg

 

 5-18-2021

There is more to Parkinson’s than meets the eye.  Just ask people living with Parkinson’s or their care partners.  Using an iceberg as an analogy, motor symptoms, the part of the iceberg that can be readily seen above water, can be more than challenging enough on their own.  However, what lurks beneath the surface are the non-motor symptoms, which as anyone familiar with the fate of the Titanic can tell you, are game-changers.  The non-motor list includes 20+ categories that range from nuisances to life-threatening.  The following four PwP (people with Parkinson’s) stories provide a window into life with PD non-motor symptoms.

PD Cognition Issues:  Mild cognitive impairment/Dementia

I was recently asked to do a patient-perspective presentation at a Parkinson’s Palliative Care Conference in Portland, OR on a non-motor symptom of my choice.  Since my biggest concern has been PD-related cognition issues that began soon after my diagnosis in early 2008, the choice was easy.  In spite of apparent resistance to open discussion of this subject by doctors and patients at that time as well as lack of online information, it didn’t take long for me to realize that a significant percentage of PwPs are eventually diagnosed with PDD (Parkinson’s disease dementia) and that it is a terminal condition.  This news would get most people’s attention and I was no exception.  In the eight years that have passed since my PD diagnosis, I have taken four neuropsychological exams and have been told that I have mild cognitive impairment (MCI), a condition that dramatically increases (but does not guarantee) an eventual dementia diagnosis.  I made a commitment to myself to be “transparent” about the impact this was having on life, hoping that this would encourage more open discussion of this subject which is now the #1 concern of most PwPs and care partners.  Part of honoring this commitment was writing a book on this topic that shared information designed to expand the conversation, ideas and thoughts regarding causation and implications for the future, my own experiences in this “prodromal” time period, what has enabled me to continue to live well and productively, and how I have reached acceptance of whatever the outcome may be.  Concepts that I am committed to include:

·         Learn from the past, plan for the future, and live in the moment

·         Focus on quality of life

·         Remain engaged as long as possible

·         Finish the race well

These personal goals provide some insight into why I have become so committed to the development and growth of team-based PD palliative care (PDPC) services.  Each of them is a “core concept” in PDPC.  I can’t imagine many things better than helping my brothers and sisters in the PD world learn about the many benefits of these services which will help them identify and accomplish their own goals.

Parkinson’s & Cognition 2016: An Update

 

5-18-2021

 

 Since I have written a number of blog articles in the past on this topic as well as a book, it seems appropriate to provide some type of status report for anyone who is interested.  I am grateful that I have received so much positive feedback regarding my decision to talk openly on this subject.

When I was writing the cognition-related book a few years ago, I talked about how this subject was typically being avoided by PD doctors and was not a major focus for research.  This seemed odd since it had become apparent through interaction with PWPs and care partners that this was the single issue that MOST concerned them.  I am happy to be able to say that this is no longer true!  Along with non-motor issues in general, cognition has become a major focus and is being discussed by doctors, in seminars, and by the national PD organizations.  The Michael J. Fox Foundation has made cognition a major priority for research funding and the Parkinson Disease Foundation (PDF) has selected it as one of two subjects (cognition and dystonia) for their 2016 Community Choice research awards.

Unfortunately, this has not translated to major breakthroughs in PD-related cognition research.  There is a clinical study in progress at Georgetown that showed promise in phase I using a leukemia drug (nilotinib) that, based on feedback I have heard, no longer seems promising.  I am still hopeful that research involving alpha-synuclein will produce breakthroughs related to Parkinson’s disease dementia (PDD), Lewy body dementia (LBD/DLB), and PD in general.

Regarding my personal journey, it is apparent to me and my faithful sidekick (my wife and care partner, Linda) that “strange things are afoot at the Circle K” (Bill & Ted’s Excellent Adventure).  I don’t try to “brand” my condition beyond the amnestic mild cognitive impairment (aMCI) diagnosis I received in 2011.  My strategy for “keeping my act together” as well as possible is to remain engaged physically, mentally, and socially and continue taking my cognition meds (Exelon patch & Namenda) and supplements (Vitamin D3 & B12, COQ10, herbal laxative, and melatonin).  As I have said before and will continue to say, I am blessed to know that whatever happens will be in God’s Hands.

Recommended PD Information & News Websites

1.    https://www.ninds.nih.gov/Disorders/All-Disorders/Parkinsons-Disease-Information-Page

2.    https://parkinson.org/understanding-parkinsons/what-is-parkinsons

3.    https://www.michaeljfox.org/understanding-parkinsons/

4.    https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

5.    https://www.apdaparkinson.org/what-is-parkinsons/

6.    https://www.medicalnewstoday.com/categories/parkinsons_disease

7.    https://parkinsonsnewstoday.com/

8.    https://www.sciencedaily.com/news/mind_brain/parkinson%27s/

9.    https://www.medpagetoday.com/neurology/parkinsonsdisease

10. https://www.nature.com/subjects/parkinsons-disease

11. https://www.cureparkinsons.org.uk/science-news