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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

An Unexpected Phone Call

I was sitting on my patio with my wife reading a book, listening to our two water fountains and enjoying our “meditation garden” when the phone rang.  The screen showed that it was from UC Denver (my hospital for neurology).  I also have a battery replacement surgery scheduled for my DBS and am working with a physical therapist due to pain in my shoulder and hip.

To my surprise, it was the PA for my movement disorder doctor (Dr. Benzi Kluger), Julie Berk.  I met Julie years ago (maybe 2010) when she was assisting Dr. Kluger with some research I was involved in.  When I had my DBS surgery, she was the specialist who adjusted the settings on my stimulator.  After I wrote my first children’s book, Carson and His Shaky Paws Grampa, I did a number of presentations about DBS that also gave me an opportunity to talk about the book since it told my DBS story through my grandson’s eyes.  The neurologist who participated in my DBS surgery was scheduled to speak with me, but she was out of town, so Julie joined me to provide a medical perspective.  I remember seeing her at various Parkinson Association of the Rockies (PAR) events in the following years.  It was always good to see her and my wife and I thought of her as a friend.  We lost contact when she switched to another department to broaden her experience.  Then, earlier this year, she rejoined Dr. Kluger as his physician’s assistant.  I learned that she was very interested in his palliative care work and wanted to get involved.  Anyway, to make a long story less long, Dr. Kluger got Julie involved with my appointments and I began meeting with her as a first step (she would then confer with Dr. Kluger and decide on a course of action regarding that particular appointment).

About a month ago I became very concerned due to a variety of symptoms occurring at once.  I was trying to understand what was going one and began to think that I was dealing with some kind of parkinsonism.  I sent an email to them that shared my concern and speculation and they scheduled an appointment for me with Julie.  Linda and sat with her for an hour or more and I poured out all my angst and concern on Julie.  I was quite agitated and Julie was concerned because she had never seen me this way.  However, she did a good job of reviewing what had been going on over the last few months including any changes.  She picked up on the fact that I had increased my dose of Rytary, my primary PD medication, to the original prescription without discussing this with Benzi.  In fairness to me, I had decreased the dose shortly after starting with Rytary a couple years ago based on my reaction to it, which turned out to be something Dr. Kluger agreed with.  In this case, as it turns out, my decision backfired on me.  I was experiencing confusion and a variety of other symptoms.  After talking with Benzi, she told me to gradually decrease my dose to what I had been taking and let her know how I felt. I also agreed to see a UC physical therapist to address the hip and shoulder pain.

Fast forward a couple weeks.  I made the change and felt considerably better.  I had a number of sessions with the physical therapist and was at least making progress.  Additionally, I scheduled a consult with a general surgeon regarding a hernia that was discovered through an appointment with my regular doctor regarding my hip pain.  I think the reduction in Rytary allowed me to think more clearly and take action to get these other problems moving in the right direction (a good thing, as I had to schedule surgery for a DBS battery replacement in the last week).

So, back to the phone call.  It was Julie calling just to check on me to see how I was doing!  I was blown away that she would take the time to do this and told her so!  I was able to share that the change she recommended had apparently been a very good thing and went on to share about the progress with the physical therapist and the two surgeries I had scheduled.  She as glad to hear that I was making progress.  Then we talked about palliative care for a few minutes and her interest in getting involved with Diane Cook’s ground-breaking self-efficacy program for PD patients (PD Self).

I wanted to write this article for two reasons.  First, to honor Julie.  She didn’t see it as a big deal, but I did.  Second, to share my encouragement that the “patient-centered” movement is continuing to evolve.  I have said many times that God has blessed me in my PD journey.  Julie is another example of this fact.

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Kirk Hall

Palliative Care and Counseling

I have been having trouble coming up with ideas for a new blog article (they usually “appear” in the middle of the night).  Either I can’t remember the detail of the idea that made it interesting (at least to me) or the idea turns out to be “not as interesting” in the light of day.  The bottom line is that the articles I used to post fairly frequently (the latest count since inception in 2011 is 160+ articles) are becoming few and far between.

It is disappointing to me that this has happened.  But like the old man who has been thrown on the cart with the dead people in Monty Python and the Holy Grail, I am “not quite dead yet”.  I am still involved in the PD palliative care research project with University of Colorado Hospital that is so important to me.  Recruiting for the study is close to completion and there will be opportunities to contribute in the end stages.  I am a “blogger partner” for the 2019 World Parkinson Congress in Kyoto for which I will be writing one article for publication in April 2018.  There are no plans in the works that I know of for a third meeting of the International PD Palliative Care group, though follow up work from previous meetings continues.

That said, I have been aware that my ability to contribute has declined and my “shelf life” is running out.  I can see that the same thing is happening or has happened with many of my “highly-engaged” friends.  I am sure I am not the only one feeling a sense of loss because of this.  Along with that is a feeling of guilt that I may be letting people down, which indicates an exaggerated sense of my importance, but is nonetheless true.

It was these feelings and subsequent thoughts that led me to write this article.  It is totally predictable that the “black hole of PD” will eventually drag us all down.  But is there a way that the angst that peaks in later stages of PD could be managed or minimized?

It seems to me that the best way to address these issues (that are predictable for all PwPs and care partners) already exists in our PD palliative care model, which recognizes the probable need for counseling.  In our study’s model, the social worker and “spiritual advisor” are designated to deal with these issues.  All these thoughts have led me to believe that we may have underestimated the need for counseling and the current model’s ability to address that need.  I think we need to consider adding a psychologist to the team who will have the experience and expertise needed.  At the same time, I think that palliative care providers need to become more proactive in offering appropriate counseling services for PwPs and care partners individually and together.

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Kirk Hall

GUIDELINES FOR PD CAREGIVERS: HOW TO KNOW WHEN TO ENGAGE HOSPICE

I had an opportunity to review a paper that will be published in the near future titled Prognostic Predictors in Parkinsonian

 

Disease: Systematic Review and New Suggested Guidelines for Hospice Referral written by Julienne L. Bemski, DO; R.

 

Brett McQueen, PhD; Julie H. Carter, RN, MS, ANP; Elizabeth R. Goy, PhD; Jean S. Kutner, MD, MSPH; Janis M.

 

Miyasaki, MEd, FRCPC, MD6; Benzi M. Kluger, MD, MS.  I was asked to do this because I participated in the International

 

PD Palliative Care Conferences held in Denver, CO (2015) and Portland, OR (2016).  These guidelines are based on a

 

comprehensive review of research related to predictors of mortality for PD. 

 

Currently, less than 5% of PD patients are using hospice services.  It is hoped that the information in this paper will lead to

 

higher rates of referral of PD patients to hospice services by doctors.

 

It has been my experience that information like this has been hard to obtain in the past for a variety of reasons including:

  • Reluctance by doctors to share unpleasant information
  • PD was not considered to be a cause of death (it is now recognized as the 13th leading cause of death in the U.S.)

I am sharing these excerpts for the purpose of providing caregivers with information that will help them recognize when the

 

time has arrived to engage hospice services (typically about 6 months before death).  I am doing this because my research

 

has shown that many caregivers have expressed regret after the death of their loved one that they did not engage hospice

 

services soon enough or at all.  It makes sense for caregivers (who are “on the job” 24/7) and doctors to work together to

 

start hospice services at the appropriate time.

 

Participation in a PD Palliative Care program enhances the relationship and communication between the caregiver/patient

 

and the medical team.  These programs are a relatively new development and are becoming increasingly available across the

 

U.S.  Telemedicine is being developed so that services can be provided even in remote areas.  Talk to your doctor and make

 

sure you have a plan in place!

 

Suggested guidelines and recommendations for hospice referral: 

Based on this review, we provide recommendations for providers on identifying PDRD patients who are candidates for hospice referral in Table 3. These recommendations include patients exhibiting (1) evidence of advanced disease OR (2) rapid or accelerated disease progression OR (3) advanced dementia. These guidelines differ from current Medicare guidelines in that they are specifically targeted for PDRD and have expanded hospice triggers to include falls with fractures, loss of efficacy or medications, and cover both motor and nonmotor symptoms. We have also added that rapid OR accelerated decline should trigger consideration for hospice in that our collective experience suggests that decline rarely follows a straight line and often accelerates as patients are nearing the end of life. Even when patient’s may not be appropriate for hospice these guidelines may be used as event triggers for goals of care discussions and suggest areas for clinical monitoring (e.g. nutrition) that are often not emphasized with current standards of care.64

 

Table 3. Suggested hospice guidelines for Parkinson’s Disease and Related Disorders

1. Demonstrates evidence of advanced disease as manifest by:

A) Critical nutrition impairment in the prior year (inability to maintain sufficient fluid/caloric intake, continuing weight loss, dehydration, AND refusal of artificial feeding methods); OR

 

B) Life-threatening complications in the prior year (recurrent aspiration pneumonia, falls with fractures, pyelonephritis, sepsis, recurrent fever, OR stage 3 or 4 pressure ulcers); OR

 

C) Motor symptoms that are refractory OR nonresponsive to dopaminergic medications OR which cannot be treated with dopaminergic medications due to unacceptable side effects AND result in significant impairments in ability to perform self-care.

2. Rapid OR accelerating motor (including gait and balance) OR non-motor (including dementia or dysphagia) disease progression and disability (to bed OR chair bound status, unintelligible speech, need for pureed diet, and/or major assistance needed for ADLs)

OR

3. Has advanced dementia and meets Medicare Dementia26, 27or Advanced Dementia Prognostic Tool (ADEPT)70 criteria for hospice referral

 

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Kirk Hall

A Story About His Life With PD by David S. Shaw

On June 23, 2015, I received a message through my website from David Shaw:

 

Thank you, thank you, thank you for your book: Window of Opportunity. I have PD and MCI at age 63. I just started a medical leave from job as social worker - drug counselor. In brief, I am scared sh*tless and not as in constipation, but as in how am I going to cope when this disease that seems to be eating away at nearly everything I hold dear in my life. The title/sub-title of your book by itself makes me feel less alone with this mess. I found you book as deeply frightening as it should be and as uplifting as it could be. Today I found your web page. I found more hope for savoring being alive, hope for finding a tolerable/grateful way to go on living. Bless you for your courage and compassion.

 

I told David that receiving his message was extremely gratifying for me.  In one email, he validated the hopes I had when I wrote the book and developed the website.  I can not overstate how much this means to me.

 

Recently, I received another email from David expressing an interest in sharing a sample of his writing with me.  His honesty and willingness to be transparent resonated with me.  Also, we shared a similar reaction, ultimately, to the trials and tribulations of PD and cognitive impairment.  I asked for his permission to reprint his story without any editing (not that much would be needed) and he agreed.  In fact, he preferred that it not be edited.  Here it is:

 

Welcoming The Mystery of Parkinsons Disease

What Will This Degenerative Condition Generate In You?

 

David S. Shaw

 

So you have been diagnosed with Parkinsons disease. Me too. Isnt it fascinating?

 

I have often wondered what it would be like to slowly lose control of some of my favorite muscles. I have often wondered what life would be like when if I could no longer remember my own name. I have wondered what it would be like to have other people take care of all kinds of things for me, because I couldnt anymore.

 

I have often wondered what it would be like to be anxious and depressed a lot. I have often wondered If I would cope if other people looked uncomfortable being around me because I wasnt moving, thinking or expressing emotions in a socially appropriate manner.

 

 

I wondered about these things as I worked as a professional social worker, for over thirty years, with people who had physical disabilities and/or struggled with anxiety and/or depression and/or intellectual impairments. Now there is a good chance I will get to satisfy my curiosity.

 

I had been experiencing a good deal of anxiety for many years. It was just stress from working too much. When I suddenly got very depressed it was because I had just changed jobs. When I began needing to remind myself more to concentrate and pay attention, it was because I had so many creative ideas based on years of living, that it was a challenge sometimes to know the best ones to concentrate on. My memory difficulties were part normal aging, but mostly due to having accumulated so much memory to have to sort through, in order to find what I needed. Of course this problem kept getting worse as memories kept accumulating.

 

When my hand writing got very, very small, it was because I was in the habit of writing small to cramp information into limited space forms. When I had plenty of room to write and I still wrote very small, it was just out of habit. When I started having trouble signing my name, it was just because I used a scribble to sign piles of forms at work, so much that I had forgottenhow to effortlessly use my full signature. I started to shuffle my feet a little because I was tired some days.

 

When I started having trouble twirling spaghetti on a fork in a spoon, I was slightly annoyed because that is the way I like to eat spaghetti and I was very annoyed because I couldnt think of an excuse as to why this was happening. It was time to see a neurologist.

 

I was hoping to be diagnosed with a rare spaghetti twirling disorder syndrome. I knew that I could follow a diet that restricted certain forms of pasta. 

 

Anxiety, depression, concentration difficulties, memory problems, small hand writing, shuffling feet, intolerance to certain forms of pasta, turned out to be better covered by the diagnosis of Parkinsons Disease, than did my alternative theories.

 

I like how the neurologist who made my diagnosis put it, as you know, you have Parkinsons Disease.  He mistook me as being someone smart enough to correctly diagnose myself. He had just met me and already he treated me like a colleague. I couldnt help but go along.

 

The neurologist did not say, (o)f course you know that Parkinsons Disease is a degenerative disorder with no known cure.Of course I did know that.

What I really did not anticipate was all of the wonderful ways my life would get better as I degenerated.

 

This is just my warning to you. You may be startled by all the ways your life can get better because of Dr. Parkinsons Disease. If you dont prepare your self for this shock, you might even miss it.

 

After being in denial as to causes for my symptoms, I went in the other direction. I did not want to sugar coat the horror of the reality of degeneration. Sure medication helped a great deal, but I know full well that the disease can do its damage quicker than the medication can keep up with working around the damage. I doubted very much that getting even better at managing worry would greatly improve my anxiety, getting better at managing sadness my depression, getting better at tricks for improving concentration, my memory and ability to multi-task and think quickly.

 

I looked at my situation with my eyes wide open, (partly because of my sleep disorder). I needed to have gratitude for what enjoyment I could still get out of life, because there was only going to be less and less of that.

 

But then enjoyment started to sneak up on me. I want to take credit for much of what has happened, but hate to admit I think the majority of it belongs to the disease.

 

When I stopped working I thought I was in for big trouble. I was not financially prepared for a retirement of ease. For fun, I like to run, hike, work out at a gym, read, travel and make collages. I am a bit of an introvert, so often prefer my own company and the company of close family members. I stink at small talk.

 

Now that I had the time to do more fun thinks, Parkinsons disease was eroding my ability to do nearly all of what I like to do with my free time, either by messing with my motor co-ordination or my finances.

 

I was encouraged to find more people to chit chat with as a critical part of my disease treatment. I didnt want to hear that.

 

Then I did something truly stupid. I went on a little hike in the woods on well marked trails. I decided to explore a poorly marked trail. As time went by I decided that I needed to explore the possibility that I was lost. I had my cell phone. I could have called my wife and told her I would be coming home a little later than I had planned. I could have called the park rangers office to say I could use a little help.

 

I knew that using the phone could lead to a determination that I was no longer capable of walking in the woods alone. This would be yet another degeneration. I was determined to find a way home by myself. I would call my wife from my car, once I found my car. There would be great concern about my woodsmanship, but there would be less drama than talking to her from the middle of nowhere.

 

I knew if I went down hill I would find water and water would lead me back to the well marked trails. I knew that Parkinsons disease had slightly compromised my balance. I did not know that I would find myself blazing my own trail, down sleep slopes, over fallen trees, around boulders, and along stream banks.

 

I never did this type of hiking in my life. My balance was better the more difficult the ascent. It was if my emergency motor coordination system was benefiting from my side walk walking system not being able to consume as much juice as it once did.

 

It kept occurring to me that I was literally risking my life to try and save face. I was trying to escape judgement that I could no longer think clearly enough to be trusted alone in the woods, by proving it beyond any doubt. I thought about the high drama of my wife getting a call from the emergency room. Yet I didnt stop.

 

My muscles behaved like my life depended on them. I found the stream. I found the private property sign that assured me that I was so far lost that I would never be able to find my car by nightfall. I found that the muscles needed to finally call home and call the park rangers worked we'll enough.

 

My wife was upset, but did not threaten divorcee. She let me know that if I really wanted to kill myself there was no need for all this effort, she would do it for me. The park rangers were very nice.

 

It occurred to me that I had been victim of that part of my brain that wanted a dopamine hit and tricked the rational part of my brain into foolish risk taking to get it.

 

As time went on I began to suspect that this feel good part of my brain had all sorts of tricks to get what little dopamine was left to be squeezed out of my nervous system. It made me spend more time creating art, taking pictures, making radical shifts in my thinking. It kept stealing energy from the oh no whats nextpart of my brain, so it could start yelling weeeee, more novelty more novelty, oh boy whats next.  I knew to watch out for shopping, gambling, sex, food, extreme thrill seeking obsessions. I didnt know to watch for an interest in all of these things moderating themselves with greater ease.

 

I believe in not buying things I dont need, not gambling, not noticing how pretty women other than my wife are when they walk by, not eating too much, not taking unnecessary risks. I thought it would always be a struggle to live up to these beliefs. I never imagined it would become much easier with all of it, with little effort.

 

I spent many years counseling individuals with substance abuse disorders. Drug addiction can be a terrible disease. People take drugs to alter their moods. Drugs can make you feel good. Drug can take can of you if you are sad, angry, bored, depressed, grieving, feeling guilty. Oh, but the side effects of taking drugs can make you feel bad in ways that taking more drugs wont fix. Counseling people with drug addition problems includes supporting them to alter their moods by doing things other than taking drugs. This includes thinking differently.

I used to suggest to clients that they pay attention to ways that they are already behaving and thinking that helped them have the moods they wanted, without taking drugs and that did not have bad side effects and then to do more of these things.

 

Often doing more of what we already know how to do has a way of there being less time available to think and act in ways that generate moods that we dont want.

 

I have found that when I pushed myself to do more of what I liked to do I got higher quality satisfaction in doing them than before I starting noticing Parkinson Disease symptoms.

 

This made no sense to me, because much of how I liked to think and what I liked to do were things that were being adversely effected by Parkinson Disease. It would have been a big mistake to avoid doing things that I had difficulty doing because of my Parkinsons disease.

 

Take hiking in the woods for example. I had hoped that I would have been able to work long enough to save enough money to take some nice trips to National Parks for some quality hiking. I wanted to be able to take some nice photographs of such trips that I could look at in my easy chair to savor the memory of these adventures. I did  not plan on the high adventure that I would have in the nearby state park. I sometimes glance at the image on my cell phone of a wonderful waterfall, that few visitors to this park ever get to see, because there is no easy way to get there unless you are lost. I glance and I chuckle.

 

Now dont get me wrong. The most important thing I learned from this wild walk was , Safety First.  Dont be stubborn. Dont be stupid. Dont cause others unnecessary worry or unnecessary messes to clean up.

 

Parkinsons disease only gave me the gift of this adventure in hindsight. It was mostly good luck that allows me to tell you the tale with a smile on my face, rather than having you hear it from someone else who is crying or shaking their head in disbelief.

 

My point is be open as to how escaping negative consequences to your Parkinsons disease mistakes, will give you fun tales to tell.

 

I worried about how Parkinsons disease could take away my ability to drive a car safely. I started to sadly study area bus schedules. As I drove I found myself paying more attention to my driving then to the thousand thoughts running through my head. Driving became more fun. I started following speed limits. I avoided accidents because I was more aware of the many people who are still driving that shouldnt be. I watch out for the drivers talking on their cell phones. I am aware of how much driving I used to do while distracted by thinking.

 

I have a hobby of cutting up art books and rearranging the images into collages. It takes careful cutting. Parkinsons made this more difficult. I decided that rather than give up on this hobby, I would force myself to do more of it as a form of fine motor coordination therapy. I found that I needed to slow down. In slowing done I noticed more detail in the images I am cutting up, more shades of color. I appreciate that work of the masters that I am borrowing from more. I have taken to making picture books for my Granddaughter. I had thought that I would have to suffer through experiencing my difficulty cutting just getting worse. I hadnt planned on enjoying collage making more.

 

I like capturing images on my cell phone camera. Parkinsons disease has slowed me down. I spend more time looking down. I notice marvelous wild flowers and stones and textures and dancing shadows. When I am looking through the lens of my cell phone camera I need to be careful of my balance. I am careful not to ignore noticing the beauty near my feet and above my head. I notice it so much more than before my diagnosis.

 

I worried that one day my disease would take away my ability to smell. I decided to get in some good smelling before its too late. I stop and smell not only the roses. I have never smelled so good.

 

Ive always wanted to do a decent job of meditating. Ive never had the patience to do this very well. My Parkinsons has slowed the speed at which I used to be able to think, my ability to work on addressing multiple complex problems, my attention to important details. It took my career as a social worker away from me. I do more with meditation these days. Particularly walking meditation. I am more motivated to pay attention to were I am and less on all of the places I would like to go. In many ways I am more aware and more alive than I have ever been.

 

Yeah, I got the sleep disorder thing too. I felt that I slept better when I was working. I think that it was because I worked myself into exhaustion and passed out more than went to sleep. Now it can take me longer to get to sleep. I wake up during the night more and wake up before I want to. Because of this I am more aware of the amazing things my brain is up to at night. I notice it creating fascinating images and movies and solving problems. It is absolutely delicious to wake up worried about some problem at work and remember that I am unemployed. The worrisome problem is in the past and if I get tired later in the day I an take a nap. Naps! What an invention. I love naps.

 

As the cognitive impairments of my disease progressed so did the time and effort it took to keep up with the record keeping at work. I spent hours at a key board typing case notes of my counseling sessions and other reports. My typing speed slowed. I am right handed. Parkinsons disease decided that my right side would be the best place for the fun to begin. I found my left hand helping out out my right on the key board. I wondered if I had the brain power to learn voice activated word processing programs and how these programs would appreciate my slightly slurred speech at times.

 

After I threw in the towel, I welcomed the relief of not needing to rack my brain to know what to write and my fingers into writing it. As I type this now, my right hand is carrying its full load. The ideas on what to write just keep coming. I dont know how this is for you reading it, but I am loving writing it.

 

Parkinsons Disease covers a lot of territory and does indeed change over time. I found it increasingly easy to notice what was going wrong, what was going down hill, would very well might go wrong in the near and distant future. I noticed my self being more self conscious as to how I walked, talked, drove, went to the bathroom. I became more aware of my degeneration.

 

My regeneration post diagnosis snuck up on me. As it started I almost didnt pay attention. I hope that you are paying attention to your generation and are not getting too cocky about your new found skills to the point of forgetting about safety first.

 

Parkinsons disease is one of the best things that has ever happened to me. Please be open to the possibility that it may be for you too.

 

I am not now going to give you a web site where you can order some product I have to sell. I have nothing to sell. I have no easy answers as to how you can cope better with Parkinsons Disease. I am far from accepting of every moment of every day that I spend with my disease. I dont look forward to it getting worse. I do want to tell you that my beliefs about the meaning of my life have changed. My sense of spirituality is less intellectual and more felt then it once was.

 

Parkisons disease has given me notice that my relationship with death is not some problem to work on later when I get the time.The time is now and now is the time for me to be more fully alive.

 

Maybe your attention span is like mine and you have skipped most of what I have written above. If so here is my take-home message. If you think that Parkinsons Disease is nothing but going from bad to worse, you are probably wrong. I dont think there will be a cure for Parkinsons disease any time soon. I think we are further off from a cure from all diseases and  all causes of death.

 

Just know, that how you think about your disease will determine how you experience it. I hope that you will experience it as one of the best things that has ever happened to you and you like I will be curious as to what this disease will generate next.

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Rhythm & Grace PD Dance Classes

I am publishing this information on my blog as a service to the PD community.  Check it out!

dance 001

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