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 

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.

 

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.

Parkinson’s and Pain

 

   5-18-2021

If you have PD and are experiencing pain, you are not alone.  According to the Parkinson’s Foundation (PF), 85% f people with PD “report pain as a troubling symptom”.  PF goes on to state:

“Pain can be classified as nociceptive, which relates to tissue damage, implicating the pain receptors in the skin, bones or surrounding tissues; as neuropathic, indicating pain arising in nerves; or as a mixed pain syndrome involving both nociceptive and neuropathic pain. Your Parkinson’s specialist, working with a pain specialist, may select treatments based on the nociceptive versus neuropathic classification.

In Parkinson’s, most pain experiences are nociceptive — seeming to result from tissue that is injured or has the potential to be damaged. Causes include persistent tremor, muscle rigidity, dystonia, musculoskeletal injury (i.e., sprains, bruises, bone fractures resulting from a fall etc.), burns and inflammation. The pain is typically well-localized to the affected body part; it may fluctuate with medication dosing. Pain caused by dystonia can be diagnosed when there is visible twisting, cramping or posturing of the painful body part. The most common areas of the body where people with Parkinson’s experience pain are the neck, upper back and extremities.

In Parkinson’s, neuropathic pain is less common, and includes conditions not directly related to PD, such as shingles, cancer pain, carpal tunnel syndrome, diabetic neuropathy, and peripheral neuropathy. The pain may present as burning, numbness and tingling, sharp sensations, or electric shock qualities. Pain due to nerve or root disease is most commonly caused by akathisia, an extreme inner restlessness.”

Pain had not been a significant problem for until a few months ago.  Following my final surgery for a detached retina in my left eye in May, I was unable to engage in much physical activity.  The first pain I noticed was in my right groin area.  I have had this type of pain in the past with hernias (on both sides).  However, I had hernia surgery on that side a few years ago.  I have also had peripheral neuropathy for about seven years (numbness in feet and legs plus cold feet and hands) and wondered if that could have anything to do with it.  After visits to both my movement disorder doctor and PCP, I had imaging that revealed a hernia in my LEFT side and significant arthritis in both hip joints.  My PCP said that the groin pain on the right side could be due to the arthritis and referred me to physical therapy (PT).

Before I had my first PT visit, I started to have worse pain in my right shoulder.  So my PT visits to date have focused on that problem.  The therapist is pretty sure the problem is inflammation in the tendon and is having me do exercises and alternate hot and cold treatments,  The pain is worst when I get up in the morning, which apparently could be arthritis.

Meanwhile, I have scheduled hernia surgery for early December.  Then, because nothing else was going on, my DBS battery decided it was time to be replaced.  So I am having THAT surgery next week.

On top of THAT (when it rains it pours) I jammed my right knee jumping off a rock (don’t ask).  I didn’t have the nerve to tell the PT about that, but thankfully it seems to be healing.  I am also starting to detect the type of pain that came out of nowhere (no apparent cause) in my left shoulder.

I have been attempting through all this get as much exercise as possible by walking and light workouts at our community recreation center (aerobic, strength, and stretching).  I get very stiff if I don’t stretch and normally take 800 mg of ibuprofen every night, which I can’t do for the next week due to the aforementioned surgery.

My movement disorder doctor has researched the topic of medical marijuana quite thoroughly.  His comments corroborated articles I have read that reported this “medication” is effective for reducing inflammation and can help with sleep and constipation (both are a BIG deal in my world).  Learn more about this subject at http://www.parkinson.org/understanding-parkinsons/treatment/complementary-treatment/medical-marijuana-and-parkinsons-disease.  I am going to try it.  I think I am correct in saying I can save 40% with paperwork I will receive based on my doctor’s approval.  He also says it is important to buy from a reputable (your guess is as good as mine) and continue to use the same one to increase your chances of product continuity (it can vary from place to place).

That’s all I have to say about that.

 

Parkinson’s Advocacy

 

 5-18-2021

There are good days and bad days when you are a PD Advocate.

Linda and I got in the car at 8 am to drive up to Greeley to fulfill a commitment to speak at the PD support group there.  After stop and go traffic on I-25 through the Tech Center and construction slowdowns/bumpy roads, we arrived in Greeley with time to spare (or so we thought).  I was riding shotgun (as always) and was in charge of navigating us to our destination with help (?) of mapquest.  This created two problems; mapquest directions often are convoluted (suck) and I get confused/flustered very easily.  Within minutes, we were pretty much totally lost.  Then we thought we were back on track but the road ended at a reservoir and we were lost again.  Linda asked a nice lady who was walking her dog for help, and she was more than happy to give it.  Unfortunately, in spite of her enthusiasm for the challenge, she knew less than we did.  We pulled over and Linda quickly came up with a new game plan, a key part of which was to put me on the bench.

When we rounded a corner and heard beagles barking in the distance (this part may not be 100% factually correct), we knew we were on the right track.  We arrived at our destination ten minutes late.  Now all of this may sound like “no big deal” to most people, but I was a basket case.  Stress and PD don’t mix.

I went inside and asked a nice young lady if she could direct me to the PD support group meeting and was met with a blank stare and the sound of crickets.  Another lady joined her, but she didn’t know either.  Just as I was about to give up another lady came along who knew where I should go (I know what you are thinking and you should be ashamed!). 

We entered the room as people were talking about the possible role of the gut as a starting point for PD (we knew this wasn’t a group of rookies).  We were introduced and found a place to sit. 

At that point, I actually did something smart (or at least Linda told me it was later).  I admitted that I was stressed out from the trip and asked for a few moments to “collect myself”.  Since I was surrounded by PwPs and care partners, everyone understood totally.  The meeting went very well.  They were very interested in the topic that was our priority, a palliative care research study at University of Colorado Hospital (we are members of the patient/caregiver advisory council).  We covered a lot of ground and answered many questions.

As I was closing (there was applause which is always good), I mentioned that I had brought a few copies of my Window of Opportunity and Shaky Paws Grampa children’s books in case anyone was interested.  At that point, a caregiver stood up holding a copy of the “Window” book.  She told the group that the book had great value to everyone with PD and that it has been very helpful to her (plus more nice stuff I can’t remember).

Anyone who has put their heart and soul into writing a book that they hope will “make a difference” in the lives of people they care about so much (in this case, all my PD brothers and sisters) will tell you that a comment like this makes it all worthwhile.  As you can imagine, it was difficult to get the words out to thank her adequately.

In spite of the challenges we experienced on our journey, it was well worth it.  In fact, it turned out to be very special day. 

Legacy

                                                                 5-18-2021

It is 4:30 in the morning.  I do a lot of my “deeper” thinking during the night.  It seems like I have better “clarity” at that time.  Possibly because there is less mental traffic to clog my circuitry.  Another possibility is that my judgement is not great at that time, which leads to ideas that “lose their luster” in the light of day,

In any case, I have been thinking about the above topic since writing the piece yesterday morning about Robin Williams.  I think most of us, or at least some of us, think about what our legacy will be from time to time.  That may lead to thinking further about what we would like it to be.  I spent a lot of time in my business career doing strategic planning.  One of the most important parts of this process was deciding “where you were trying to go” as an organization.  Later in my career I had a business that helped people with career planning which often started with the individual answering the question “what do I want to be when I grow up”.  In other words, developing an individual strategic plan.

That is all any of us can really do when it comes to our legacy.  Imagine someone describing our legacy at some point in the future and what we would like to hear them say.  Then we at least have the opportunity to do things that might lead to those comments after we are gone.  Because legacies can’t really be built.  They are described in hindsight.

When I look back at my career “pre-PD”, it seems to me that much of what I did in my business career was preparing me for what I have been trying to do as a PD advocate (my current job description).  If I had died at 59 instead of being diagnosed with PD, I can’t imagine my legacy being very memorable when it comes to my career.  Actually, I think my legacy would have been the wonderful boys that Linda and I raised.  I still believe that will be our most important legacy.

So where am I going with this?  I better get back to that or I will lose the thoughts that got me out of bed.  Regarding my “advocacy career”, I feel that I am doing work that is personally meaningful for the first time in my life.  That is a real gift!  I don’t spend a lot of time thinking about what I am going to do.  One thing leads to the next thing and so on.  It has been that way since I was diagnosed.  It has become more challenging to maintain my “forward momentum” the last couple years.  But each time I have “slowed down”, it seems that I eventually have been motivated to “re-enter the fray”.  I don’t really know if anything I have done or will do has any lasting value.  That is not and can’t be my motivation.  That will be for whoever is in charge of describing my legacy to decide.  I am just grateful to have had the opportunity to finally do something that seems important.

Singing & Me

 

5-18-2021

A recurring theme for me in my writing and presentations is the importance of staying engaged.  I am thinking today about recognizing those activities that are special in each of our lives for whatever reason and trying to find ways to stay connected to them.  Singing is high on my personal list.

I remember singing in the car with my family on trips at an early age.  We sang songs that were familiar to my parents like “I’ve Been Working on the Railroad” (both of my grandfathers worked for the NY Central Railroad), “Down By the Old Mill Stream”, “Frere Jacques” and many more.  Everyone in my family could carry a tune, so I probably assumed that anyone could.  I don’t remember any family member or relative singing in a choir, let alone solo.  We all just liked to sing for the fun of it.

I think it was in fifth grade when we started having music classes (singing and band).  I remember one of our teachers singing solos at school events.  When I was in 8^th grade, he asked me and three others if we would sing for an upcoming talent show and we agreed.  He taught us to sing “Goodbye My Coney Island Baby”, a “barbershop” tune with 4-part harmony.  We did well and won, but it was somewhat of a “hollow victory” as the second place finisher was a group of guys lip-synching “Duke of Earl”.

I sang in the high school choir as well as an “ensemble” made up of 16 people (four per part).  The ensemble introduced me to 8-part harmony (first and second soprano, alto, tenor, and bass parts).  I was aware that anyone could audition to be a member of the All-County Select Choir (ACSC) each year.  An audition meant singing solo in front of a group of music teachers from other schools that I didn’t know (a terrifying prospect!).  Our choir director encouraged me to try out my junior year.  With more than a little trepidation, I sucked it up and went for it!  I remember being quite happy when I was selected!

The ACSC experience marked the beginning of a new chapter in my “singing career”.  The music was more advanced and challenging and I was surrounded by singers who were very talented, but I did not feel out of place in this environment.  However, when my school choir director asked me to sing the “Star Spangled Banner” at a basketball game, I declined.  Just the thought of it scared me silly. I was not a self-confident person at that point in my life.

My family moved the summer before my senior year to another school in another city.  It was not considered “cool” to be in choir at this school.  Not being confident and wanting to fit in, I decided that I would “sit this one out”.  I would not participate in any organized singing program for the next sixteen years.

_____________________________________________________________

Fast forward to 1982.  We attended a church in Buffalo while I was in grad school the previous year.  I enjoyed singing the hymns as part of the congregation and thought my voice sounded pretty good.  After I graduated and started thinking about what I wanted to do, I realized that I missed singing.  So one of the things on my list when we moved to a new town in NJ was to join a church that had a choir.    

I enjoyed singing in that choir very much.  There were about 25 people in the choir.  The organist was also the choir director.  We didn’t sing anything particularly challenging (for some reason, he hated the “Hallelujah Chorus”) and he never asked anyone to sing solos.  I can remember rehearsing Christmas music and thinking I sounded really good.  So when I was asked to sing a very small solo part in a church play, I decided to go for it!

When I say I was awful, that is an understatement.  I was off key and couldn’t breathe.  At that point, I decided I was not cut out for singing solo and wouldn’t risk that kind of humiliation again!

Fast forward again to 1994.  The first attempt to bring down a World Trade Center building across the street from where I worked in 1993 had failed.  We had decided to move to Colorado (a good decision, as it turned out).  We joined a small church that had a small choir.  It didn’t take long before the minister’s wife (a choir member), the director, and the pianist were encouraging me to sing solo.

I want to interject that it was around this time that I became aware that I had developed what seemed to be a natural vibrato in my singing voice (a good thing).  I had always had this, but it seemed more consistent and effortless.  I now think this was an early sign of things to come.

So I took a leap of faith, ignoring (but not quite forgetting) my previous experience.  The first couple times I had trouble breathing and missed a word here or there.  Once I realized that I could actually do this, I started to enjoy it.  And I was good. Notice I am not saying great.  I am no Josh Groban, but I loved singing his songs (when I could fit them into my range).  It is difficult to share this honestly without sounding conceited.  I considered my voice, such as it was, to be a gift from God.  That said, I later realized that I had not fully appreciated it and what it meant in my life until it was gone.

Another aside.  Whenever I was singing anything that was particularly important to me (my son’s weddings, for example) I would pray for God to be with me and help me do well.  I can honestly say that I was never disappointed when I did this.  It was something I would recall years later in a time of need.

I was blessed by having many opportunities to sing in churches, at weddings, memorial services, special events and community concerts.  A high point that didn’t involve any solo singing was when I sang with the Colorado Springs Symphony chorus (a holocaust memorial program and multiple performances of “Carmina Burana”,  one of which was with Gerry and Betty Ford in the audience at the Vail amphitheater.  I also started singing in a community group called the Tri Lakes Music Association and became a soloist for them.  One of the songs was a version of “O Holy Night”, a favorite of mine I have performed at Christmas church services and, later, in a retirement community chorus.  But by far, the biggest thrill and honor for me was being asked to sing at both my son’s weddings.

 

 

 

The year after my diagnosis, we downsized and moved closer to our sons.  We joined a Methodist church that is affiliated with the one we had attended previously, and I joined the choir.  I had started to lose confidence is my ability to do solos that had more to do with anxiety than voice quality.  However, the quality of the music program under the leadership of Jim Ramsey made just being in the choir very fulfilling.  I was the only choir member that used a music stand due the shakiness of my hands.  Then in 2011, I had deep brain stimulation surgery, which stopped the shaking, so I no longer had to use the stand.

At the same time that I was singing in the church choir, I also joined the chorus in my new retirement community.  Our Christmas and Veteran’s Day programs were well received by our neighbors.  My voice held up well for about four years, and this became my opportunity to do solos.  My last year in the chorus, a fellow tenor (and retired pastor) from my church choir agreed to become our director.  We were able to take our performances to a new level with his direction and participation by a few key members of the church choir including Jack Kennedy (another fellow tenor) and Marge Harper (soprano).  Both have fabulous voices and are very kind and generous people.  I can’t remember for sure all the programs we did, but I do recall singing my favorite barbershop song (by the Buffalo Bills in “Music Man”), Lida Rose.  I got to sing the melody which was such a thrill (especially since I was able to hit the high notes).

My voice quality started to noticeably deteriorate (gravelly sounding) and my ability to hold out notes dropped off considerably.  At the same time, I noticed that I was having trouble “processing” and keeping up in church choir rehearsals.  I recall being very concerned about not wanting to “drag down” the quality of the choir.  I decided to stop singing in both the church choir and community chorus around the same time about four years ago, I would guess.

At that point I didn’t expect to ever do any organized singing again.  Once more, something unexpected happened.

In 2012, I visited Phoenix early in the year to speak to the PD support groups run by the Muhammad Ali Parkinson Center about deep brain stimulation therapy.  While I was there, a friend (Patti Meese) took me to a rehearsal for a PD singing group, the West Side Tremble Clefs (WSTC).  I enjoyed singing with them and meeting there energetic, inspiring leader, Sun Joo Lee.  Four years later, early in 2016, Linda and I (without a lot of forethought) bought a vacation condo in the Phoenix area.  So it was around March last year that I walked back into a WSTC rehearsal!  I didn’t have much of singing voice at all, but that didn’t matter to the group or Sun Joo.  They were there because they love music, each other, and Sun Joo.  I gradually got enough voice back to enjoy the experience and to get Sun Joo interested in having me do a solo.  I was interested too, to be honest, but I was scared.  So the cycle I had gone through all those years ago started again, but in a much different context.

Fast forward to my 69^th birthday.  We were doing a fundraiser event at a local church that is our biggest fundraiser (the group is totally self-funded and managed-quite an accomplishment for a group of “Parkies”, as my friend, Gil Thelen, likes to call us).  I had agreed to do a solo (Annie’s Song).  The day before the concert we had a rehearsal and I tried singing it with our pianist (Mina DeWitt) during our break.  I sang it in the key of “C” which had been comfortable for me in the past (the original is in “D”).  I was just plain flat out horrible!  So, at this point, I am scheduled to be the first soloist in the program, and I am scared stiff!  I told Sun Joo that I wouldn’t mind if she scratched me from the program, but she declined, saying it would be fine (even though what she had just heard was clearly NOT fine).  I tried to think of a possible solution and came up with a “Hail Mary” plan.  At the end of the rehearsal, I asked Mina to transpose the music “down a step”.  Thankfully, the result was much improved.  Enough that I was able to sleep that night.

I still was feeling more than a little trepidation when I stepped up to the mike the next afternoon.  I had asked God to be with me, as I had done in the past.  I can’t explain it, but I was able to control my nervousness.  In the lower key, I was able to “sing out” and my voice quality (minus any attempt at a vibrato) was good.  Like in the old days, I looked out in the audience and found Linda.  She was crying.  I knew then it was good.  I was relieved as I sat down and thanked God.

There was something “magical” about that program.  Sun Joo mentioned it, as did Beth Lee and others.  It was palpable, but hard to describe.  I think magical is the right word.  The program and fundraiser were both a big success.

I don’t know what the future holds for in terms of my love for singing.  I intend to keep sing in with the Tremble Clefs.  What a blessing it has been!  I am also using my advocacy connections to be a part of working toward making Tremble Clefs available to everyone with PD.

I Have a Dream Today

 

5-18-2021

Written 10-14-17  

I am going to ask my friends in the PD world for some help today.  But first, some background to provide context.

I have been looking forward to rejoining the Tremble Clefs singing group for people with Parkinson’s (PwPs) in the Sun City, AZ area this fall.  I had the chance to sing with them in early 2012 when I was in Phoenix doing presentations to Phoenix area support groups in conjunction with Medtronic and the Muhammad Ali Parkinson’s Center.  When my wife and I became “snowbirds” in 2016, I started singing with them on a regular basis.  I thought it might help rebuild my singing voice which had pretty much “gone south” over the past few years.  I had no idea how it would impact my life.

I have now been a member of the group for over a year.  It does help both my singing and speaking voice when I am participating on a regular basis.  We practice every Wednesday for two hours at a church in Sun City.  Our leader, Sun Joo Lee, takes us through warm ups that include stretching, vocal, and cognitive exercises.  Then we rehearse songs that we will be singing at upcoming performances at churches, retirement residences, and other venues in the area.

I am somewhat of an introvert, so it took some time for me to become comfortable with the group.  Plus I was self-conscious due to the change in my singing voice.  Gradually, I became less focused on myself and more aware of the people around me and our leader.  The group is made up of as many as 60 individuals, male and female, some with PD and some caregivers. Sun Joo is our director and we have a keyboard accompanist. 

Sun Joo is extraordinarily committed to the group (she works with our group on the west side of Phoenix, another on the east side and one in Scottsdale).  She clearly loves everyone in the group and they love her back in spades!  She shares information about former members of the group and health problems of current members.  She arranges parties for group members and the inevitable funeral plans that come up.  She makes copies of music, plans future events, and so much more.

The PwPs in the group are at various stages of the disease.  Some have minimal symptoms, but many are in advanced stages that include dyskinesia, significant cognitive issues, slowed movement, and balance issues.  There are many symptoms beyond the ones that can be seen.  They are devoted to the group and to each other.  For many of them, Tremble Clefs practices and performances are the high point of their week.

 

Having seen the positive impact Tremble Clefs has on our group, I can’t help but wish that everyone with PD had a Tremble Clefs group available to them.  That is a longer term goal I am working on, but that is complicated and will take time.

The Phoenix-area Tremble Clefs organization has to rely on donations and self-funding to pay for all expenses, including compensation for the director and accompanist.  Choir members pay a fee to participate and help with fund-raising activities.  They create budgets, pay bills, and handle all financial administration.  It is something they are willing to do in order to keep the organization alive.  They would love to have this taken off their plate, but don’t know how to find a solution.

I have worked for corporations and business consulting firms in the past, and have some experience with nonprofit corporate sponsorships.  Most major corporations allocate funds for this purpose.  They look for relationships with organizations that will further their business goals by creating favorable brand recognition and enhance their brand image with their target customer base.

It seems to me that many corporations that provide products or services to the Parkinson community would have interest in supporting something like this, especially in the Phoenix market where there are so many PwPs.  This would include pharmaceutical companies, service providers, DBS companies, product manufacturers and more.  Without going into detail, this involves a relatively low annual expense and a great deal of visibility (advertising, signage, programs, shirts worn by members, events) due to the popularity of Tremble Clefs concerts in the Phoenix area and a positive image that has been created over a period of 10+ years.

I am going to publish this on my blog and share it with my network of PD advocates.  I would not ordinarily turn to social networking to pursue companies who may be interested in considering a sponsorship relationship with Tremble Clefs in Phoenix.  However, I have received many inquiries from these companies through my blog that are interested in having me publish information about their product or services, speak at meetings, provide feedback based on my knowledge of the PD world and more.  So I think there is a good chance that this article will be seen by companies that may have interest.

Any companies or organizations that would like to discuss this matter can contact me through my website at http://shakypawsgrampa.com/index.php/contact-kirk-hall.

Benzi & Me

 

5-18-2021

I first met Dr. Benzi Kluger late in December 2009, over a year after I had been diagnosed.  Eight years later, I would like to share my thoughts and reflections on our relationship. 

Clearly, neither of us would have expected what has evolved.  I was a fairly typical (anxious) new PwP with lots of questions.  He was a new addition to the movement disorder team at University of Colorado Hospital (UCH) who looked like he could be Jerry Garcia’s brother.  He also had experience and interest in cognitive issues which was #1 on my anxiety list.

Over the next few years we got to know each other.  I admired his commitment to the PD world.  It seemed that whenever there was an opportunity for him to engage a PwP group, he would be there.  Over time, he developed an obvious ability to connect with his audience.  Benzi communicates with a unique style that combines knowledge, insight, humor, honesty, and caring.  He makes difficult subjects understandable.  He tells people things they don’t always want to hear without scaring them. 

There was a turning point in our relationship at a conference in 2012, I think.  I was sitting at a table having lunch by myself when Benzi asked if he could join me.  I’m not sure why, but I could hardly believe he would take the time to talk to me as a “real person” (not a patient).  It wasn’t anything he had done that made me feel that way.  I guess it was just how I had come to think of doctor/patient relationships at that time.  The trajectory of our communication gradually changed after that. 

I think there were two things in particular happening concurrently in the 2012-13 time frame that solidified our connection.  One was the evolution of our common interest in doctor/patient relationships into Benzi’s leadership role in PD palliative care.  The second was his commitment to provide feedback of a book I was writing.  Without reviewing all the details (they are available in another post), I was a partner of sorts in the development of PD Palliative Care, the current clinical research study, and the first International PD Palliative Care Conference.  Regarding my book, Benzi’s advice stopped me from seeking publication prematurely.  In the following months I was able to finish a manuscript that felt “right” and he agreed.

I had asked Benzi to write a forward for the book.  When I read it for the first time, I was totally “blown away”.  It was hard to believe that a man I admired and respected so much would say these things:

The first time I met Kirk Hall was in November of 2008. In retrospect, I think it is fair to say that this meeting shaped both of our lives in ways that neither of us would have predicted at the time. I think it is also fair to say that it began a relationship that has moved far beyond what I learned about in medical school classes on communication as the "doctor-patient relationship."

I was just four months into my grown-up job as an assistant professor of neurology at the University of Colorado following more than ten years of school, residency, and fellowships. Despite all this preparatory work, I was still very much in the midst of figuring out what I was doing with my career. Still, I was not totally without direction. Having done fellowships in behavioral neurology (the neurology of problems with thinking, memory, and behavior, particularly dementia) and movement disorders (the neurology of problems with motor control, including tremor and Parkinson's disease), I was committed to doing work at the crossroads of these two fields. Being done with training meant that it was now up to me to determine what that further work would look like. I had just started doing research on non-motor symptoms in Parkinson's disease. Although this may sound focused, non-motor symptoms refers to any and all symptoms other than shaking, slowness, and stiffness (e.g., thinking and memory problems, hallucinations, depression, anxiety, constipation, pain, fatigue, insomnia, etc.).

Kirk was also at a crossroads in his life. He too was at the beginning of a journey that would involve the meeting of behavioral neurology and movement disorders. And despite the fact that he did not choose the medical conditions that led to our meeting, he too was faced with the dilemma of how he was going to live his life with them. Kirk was referred to me by the movement disorder neurologists who were taking care of his tremor to deal with his non-motor symptoms, which at that time included changes in thinking and memory, fatigue, and depression. Although I'm sure my notes from that visit contained a wealth of medical information, including his physical examination and neuropsychological test results, I don't think those notes (or most medical records, for that matter) captured what was really important in our interaction as people.

To begin with, the notes imply that I (the physician) am the expert and Kirk (the patient) is the beneficiary and subject of my knowledge. I think one of the many values of this book is that it turns this common wisdom on its head. Kirk lives with the symptoms I read and write about. He is an expert on this subject because he is the subject.

I remember that Kirk was anxious, and that his anxiety was centered around the changes he noticed in his thinking and memory. Scared may be an even better word for what he felt, as it implies a normal reaction to something scary rather than an abnormal reaction to something that should be easy to accept. For many people, the prospect of losing one's memory, of someday not recognizing your spouse and children, is more frightening even than death. Kirk was not afraid to be vulnerable and share his fears with me then, and he was equally candid when I invited him to speak as part of a patient roundtable discussion in front of 60 doctors and other health care providers. This vulnerability has been one of his many gifts to me and the Parkinson's community, a gift that was a driving force for this book: to take those parts of Parkinson's that are scariest and talk about them openly.

I remember reassuring him at that time that he did not have dementia and that I expected he would have many good years ahead of him. I think it was during this discussion that he first brought up the idea of writing a few books and that I first encouraged him to do so. I could tell him he had a window of opportunity that he could choose to use, but neither of us could know how long it would last. Kirk didn't just take the opportunity, he ran with it. Since that meeting he has led two Parkinson's support groups; written three books; and become an advocate for Parkinson's research, a blogger, an advocate for patients, and a national speaker. This book is important not just for the messages it contains, but as a message itself: an inspiring example of opportunities seized from a place where many would have given up hope.

Kirk is a deeply spiritual man who values his faith and draws upon it as a source of strength and inspiration. To talk about such things in our secular age seems taboo, particularly in a book on a medical topic. But despite the increasing use of technology in medicine, doctors ultimately take care of people, not diseases. When dealing with serious, progressive, and life-altering illnesses, caring means asking people about their hopes and fears, understanding their beliefs, and helping them reconnect with their sources of strength and meaning. This type of work is not currently well supported in our medical system, as it (of course) takes time, has no insurance billing category, and is not for the weak of heart.

Since my first meeting with Kirk, I have gone on to obtain grant funding to better understand the causes of dementia in Parkinson's disease, with the goal of developing improved treatments, and have started one of the first team-based palliative care clinics for Parkinson's disease in the United States. Kirk has become a local and national leader as a patient advocate. I am proud to write the foreword to this book and hope that Kirk inspires you as much as he has me.

—Benzi Kluger, MD, MS

Associate Professor of Neurology and Psychiatry

Director, Movement Disorders Center

University of Colorado, Denver

August 2013

 

Linda and I have “enrolled” in the PD palliative care (PC) clinic at UCH and are very happy with the care we are receiving (remember, palliative care is not hospice, in case you were wondering).  The PC team is playing an important role in helping us to maintain a good quality of life.  When it comes to the final chapter, hopefully many years from now, I look forward to having my friend Benzi in my corner.

 

 

Crossroads

 

5-18-2021

 

I am not referring to the fabulous song/album/box set featuring Eric Clapton when he was with "Cream" (though I am a big fan!).

I have a strong sense that we are at a critical moment in time in the PD world.  Many of my fellow PWPs that I have met at the World Parkinson Conference and through my association with the PDF Parkinson Advocates in Research (PAIR) program are excited that the potential benefits of patient participation in clinical research study design, implementation, and evaluation is now a major topic of conversation.  I have the privilege of being involved with two studies (the palliative care study that I wrote about previously and upcoming PD cognition research study.

A cynical person might speculate that this surge is not necessarily the product of an epiphany in the medical research world.  Some might speculate that this development is closely linked to major research grant funding that has been made available by the Patient Centered Outcome Research Institute (PCORI), which places a priority on patient involvement in research.  They believe that patients bring a unique perspective to these studies that can help ensure that the studies are focused on issues of importance to them and that they are conducted in a way that the outcomes will address patient's needs.  As a result, including patient stakeholders in grant proposals increases the chance they will be approved.

At the end of the day, it doesn't really matter what brought us to this point.  In my opinion, a wonderful opportunity has been dropped in our (patient's) laps.  What we do with that opportunity will determine whether this trend continues or "dies on the vine".

Regardless of what you may hear, there are researchers who are either opposed to patient involvement or, at least, skeptical.  I have had the opportunity to "break ground" in this regard by participating in two research consortium meetings for the purpose of providing patient input.  In one, I was treated rudely (the meeting chairperson apologized to me afterward).  In the other, when asked if I had anything I would like share, I brought up a topic I thought was relevant and of importance to patients for research purposes. The immediate reaction from some in the room was to denigrate my suggestion and move on.  Fortunately, others disagreed and commented that my idea was relevant and worthy of consideration, resulting in about ten minutes of discussion.

I will admit that I was offended that some wanted to dismiss me "out of hand".  But after thinking it over, I realized that this type of reaction was understandable and predictable.  They are not bad people.  Maybe egotistical, "turf-minded", and slow in accepting new ideas that they perceive as threatening.  But that is part of the reality of human nature.

As the patients who have been recruited into these situations, we have to decide how we are going to react.  We can insist that we be treated fairly and given a chance.  Be indignant and put these recalcitrant individuals in their place, by God!  On the other hand, who can really blame them?  They have devoted many years of their lives developing expertise beyond the grasp of all but a few.  Now they are having people who don't know anything worth mentioning about what they do shoved down their throats.  They are understandably irritated and resistant.

I would suggest that patients take a different approach.  In order to earn respect, we will need to deliver value, plain and simple.  And let's be clear, we do have value to offer regardless of what anyone may think.  We are the ones living with this disease day in and day out.  Years of education and experience are invaluable, but they don't provide that perspective.  Similarly, neither can our personal perspective replace the expertise of researchers.  IT IS THE COMBINATION OF RESEARCHERS AND PATIENTS WORKING TOGETHER, EACH BRINGING VALUE TO THE TABLE, THAT WILL PRODUCE THE RESULTS WE ALL DESIRE.

I would encourage both researchers and patients to choose studies for patient participation cautiously to ensure that patients can, in fact, make a valuable contribution to a particular study.  Some studies will not be appropriate.

I am very excited to be a stakeholder in the PD Palliative Care research study I have been talking about.  I can't think of another study that has the potential to benefit from patient involvement as much as this.  Not only that, there is a significant opportunity to improve the lives of patients, caregivers, and their families at all stages of the disease if we get it right.  I take that very seriously.