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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

Camping with Parkinson’s

 

 

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Linda and I did very little camping before moving to Colorado.  Once we moved here in 1994, we decided to give it a try.  It was one of the best decisions we ever made.

We started with a small two-person tent and slept in sleeping bags on cushioned mats at Mueller State Park west of Colorado Springs.  We loved hiking, campfires, our view of Pikes Peak, and the incredible night sky at 10,000 feet.  We had no idea there were so many stars!

We did NOT like sleeping in a small tent and the mats were not comfortable.  We definitely were interested in doing more camping, so we decided to invest in equipment that would provide more comfort and convenience.  We have actually downsized from a “tent condo” (I could stand up in it) to a smaller 4-person tent that still has plenty of room but not as much head room (easy to put up and take down).  We have also acquired many comfort items that we now consider necessities (Coleman propane stove/grill, inflatable queen size mattress, pop-up canopy for picnic table, drip coffee maker (use with Coleman stove), and a two-person inflatable kayak.

The obvious question is why do we tent camp instead of using a pop-up camper or RV.  We like the simplicity of tent camping and the fact that we don’t have to spend a bunch of money on a camper and then worry about upkeep and storage.  Plus, we realize that we won’t be able to do this much longer due to PD.

Fast forward 25 years (hard to believe-time flies).  We just got back from a 3-day camping trip to Golden Gate State Park northwest of Denver and southwest of Boulder with our younger son and his family.  We have camped so many places I am not even going to try to mention them all, but some of our favorites include Rocky Mountain National Park, Shadow Mountain Reservoir (Grand Lake), Mueller State Park, Turquoise Lake, Gold Camp (one of the best but least well known spots – north of Minturn), Heaton Bay, and so many more.

PD continues to encroach on my ability to do some things.  I can still whack around a tennis ball for a few minutes and play golf not very well.  I gave up snow skiing a few years ago.  With regard to camping, we have made some “adjustments” to the ever-shifting “new normal” (all us PWPs know what that is).  Our hikes, which included a climb up Mt. Elbert (the tallest “fourteener” in Colorado) just 10 years ago, are much shorter and flatter.  I use walking sticks (I highly recommend these – they provide security and are a big help going up or down hills).  We pick camping spots that are close to where we park the car to make setup and take down easier.  I spend a lot of time packing toiletries and medications and follow a system that helps me make sure I do all the things I am supposed to do at the right times.  I have a pill timer that reminds me when it is time to take pills.  Frankly, I am leaning more on my care partner, Linda, who understands my limitations and carries more of the load so that we can continue to do something we love.  She does this every day.  I would be lost without her. 

I encourage everyone to continue to do the things that they love to do as long as possible.  With a little creativity and planning, you may be able to “engage your passions” longer than you think.  And when you can no longer do them, you can still read about them, watch TV programs about them, go to events that involve them as a spectator………..you get the idea.  Staying engaged is a good thing.

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Kirk Hall

A SWAG THEORY REGARDING THE CAUSE OF PD

For anyone who doesn’t know what SWAG is, where have you been?  SWAG stands for scientific wild ass guess.  It seems to me that after 9 years living with this pain in the everywhere disease that I should be entitled to one of these.  So here it goes.

Research has been pointing to the gut as the point of origin for PD for some time now.  From there, “bad stuff” (my official designation for the “tadpole stage” of PD) migrates up the spinal canal to the substantia nigra causing degeneration of dopaminergic neurons that result in a variety of changes affecting the basal ganglia network.  This last sentence is drawn 10% from personal knowledge and 90% from acquired google skills.  To conclude this review of the science behind the progression of PD, let it suffice to say that more “bad things”, including formation of lewy bodies due to misfolded cellular protein (alpha synuclein), happen after that.

All this sets the stage for the theory I am about to propose.  This was not a revelation to me in particular.  I seem to recall reading about this topic in a brain health book while writing Window of Opportunity (published in 2014 which talks about my personal journey with PD, fear of dementia, and other things I have learned or experienced along the way). I wrote the following in the chapter that provided a point of view on the impact of all the forms of stress in our lives on our cellular health:

Other potential sources of stress we all live with may include:

* Anything ingested into the body, including water, other liquids, and food

* The air we breathe

* Smoking (ironically, current research has shown that nicotine reduces the risk of PD)

* Pollution

* Life/work/relationships

* Psychological factors related to Maslow's hierarchy of human needs[54] (poor self-esteem, for example)

* Exposure to or ingestion of toxins, including pesticides (not sure if alcohol should be included in this category, but it seems likely, especially when consumed excessively)

* Excess weight

* Overall health

So, life as we know it can increase our chances of developing any number of diseases. Each of us has the opportunity to learn as much as we can to enable us to make informed choices for safeguarding our own health as well as the health of our families. Or we can choose to not know and just hope for the best (a position that is understandable, though I don't subscribe to it), which I know is the preference of some.

It seems important to consider what factors contribute to symptoms related to various conditions and, more importantly, the root causesbehind these problems. Perhaps at some point we will decide to examine our priorities as individuals, couples, and families and make some tough decisions regarding wants vs. needs, what we do for a living, where we live, what we eat and drink, how we relax, and more. It is natural to be lulled into complacency by a sense that we do not have choices. The truth is that for most of us, society, our neighbors, our friends, TV advertising, and more establish the constraints we choose to live within. The trend today for many is toward a fast-paced, complicated life where acquisition and thrill seeking are the priorities. Technology is a good thing for the most part, but when we become slaves to communication (social networking, email, texting, cell phones, and more), we may need to call for a time out to rethink things. How we choose to spend our time, energy, and resources is always going to be subject to change based on new developments. Regardless, there will always be a need for balance and perspective. These are my opinions, for what they are worth.

So all these possibilities had been bouncing around in my increasingly-feeble brain when I had the honor of participating on a panel that presented ideas related to palliative care and Parkinson’s in Portland at the last World Parkinson Congress.  I have a vague recollection that one of the moderators, Ruth Hagestuen, during the course of a conversation told me (emphatically) that she believed that the primary cause of PD would ultimately be shown to be nutrition.

At this point, I have to say that I agree, though it seems clear that other contributing factors may include exposure to toxic substances and head trauma, as well as genetic predisposition.  So why have I reached this conclusion?  I’m glad you asked!  Assuming that the gut IS, in fact, where PD starts, it just makes sense since that is where what we eat and drink goes.

I am not an authority on the subject of what to avoid and what to include in a healthy diet. I believe that ten years from now (or less) it will be part of our routine to look at labels and avoid preservatives, added chemicals, excess processing and a lot more.  As a society we are addicted to too much sugar and “bad carbs” (potato chips, etc.).  My younger son and his wife are a good example of health-minded people who have decided it is time to “take the bull by the horns” for their sake, but also for the well-being of their two young children.  They have read the “Grain Brain” book and had individual sessions with a nutritionist.  There are many books on this subject, but this is definitely a good one.

Each generation learns new things that have significant potential to improve their health.  My parent’s generation thought it was cool to smoke.  I think I was a teenager when smoking was found to be linked to lung cancer and more.  My dad smoked three packs a day for years and, though he quit in his 50’s, he was also significantly overweight for years.  He had two heart attacks, a stroke (after which he “found Jesus” food-wise and loss lots of weight, but it was too late as he died with pancreatic cancer at 71.

Both my wife and I were raised in homes where we loved good food.  Like many people, we turned to it in times of stress or to celebrate.  As in previous generations, we didn’t know what we didn’t know.  But as time has gone by it has become clear that “we are what we eat” (with the exception of those disgusting people who can eat anything and not gain weight or have high cholesterol). 

Those who have been followers of my blog read in early 2015 about my decision to lose weight and shape up in a series titled Change of Direction.  I was proud of the results of this effort which involved reaching the overall and specific weight goals I established with my doctor.  I felt better and looked good!  My weight today is less than ten pounds higher than it was then, but I look heavier due to bloating that started in 2016.  And I will admit that, though I eat less overall for sure including red meat, I still turn to comfort food under stress.

I hope that this article provides “food for thought” (stop booing the bad pun!).  I feel obligated to try to pass on something of value to the PD world.  While we wait for a cure, it seems like a good idea to chart the best course possible based on the information available to us.  Accordingly, most of us have committed ourselves to exercise.  If you agree that the idea has merit, perhaps you will consider adding nutrition to your list, if it is not already there.

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Kirk Hall

The Power of Engagement

Engagement is crucial to the quality of life of PwPs and care partners.  It is something we all have a great deal of control over.  It has many positive benefits for you and sends a powerful message to family and loved ones that you want to do everything in your power to maximize your time with them!

Engagement in this context refers to the interaction between a PWP (person with Parkinson’s) and the world around them.  There are many different types of engagement including physical, mental, social, hobbies/passions, and spiritual (some of these overlap). 

Physical engagement refers primarily to exercise, which is a proven way to slow Parkinson’s disease (PD) progression.  Do as much as you can SAFELY!  Consult your neurologist about what and how much exercise is right for you.  There are classes available in many parts of the U.S. for PWPs and care partners including Rock Steady Boxing, yoga, dance, and basic exercise.  Walking is a good basic exercise.  The idea is to get up out of your chair and move around as you are able.

Mental engagement can include reading, writing, watching educational programs on TV, doing puzzles or games, singing, participating in sports, discussing world events and much more.  The goal is to maximize neuroplasticity for as long as possible.

Hobbies/Passions are a type of engagement I like to highlight for a number of reasons.  They involve physical and/or mental engagement as well as social engagement in some cases (sports, music, dance, board games and much more).  By definition, they involve activities that are personally enjoyable.  We are all more likely to engage in activities we enjoy as opposed to things we have to force ourselves to do.  At the risk of getting “into the weeds”, these types of activities often result in the production of endorphins which can have a very positive effect.

Spiritual engagement is important to many, but not all, of us.  For those to whom it is important, this can involve active participation in their faith and related activities such as prayer and attending a place of worship.  For others there is a belief in a “higher power” they experience through nature, music, art, or meditation.  If it is important to the individual, it is a good thing to maintain that connection.

There is a tendency for patients to become depressed and withdrawn as PD progresses leading to faster decline.  Engagement can help PWP’s fight off two very common problems – apathy and depression.  I have a personal favorite based on my own experience that I call altruistic engagement which involves trying to make a difference in people’s lives.  It was my faith that led me in this direction when I realized that I was experiencing apathy and depression due to spending too much time thinking and worrying about myself.  Consider options like participation in clinical research studies, brain donation, writing a blog, assisting with a support group, or something as simple as spending time with someone who is struggling.

I recommend that you think about what engagement should look like for you.  Enlist your most important asset, your care partner, to help with this.  Benefits include your personal wellness, reduction of stress for your care partner, and peace of mind for your family.

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Kirk Hall

The Joys and Challenges of Parkinson's Advocacy

 

There are good days and bad days when you are a PD Advocate, like anything else.

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 the help (?) of mapquest.  This created two problems; mapquest directions often are convoluted 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 our palliative care research study at University of Colorado Hospital (we are members of the patient/caregiver advisory council).  We talked about many other subjects, notably the importance of working with a movement disorder neurologist (MDN).  Predictably, not everyone was doing that for a variety of reasons, the main one being that there are no full time MDNs in that area.  We were able to share with them the idea of working with a local neurologist and a Denver-area MDN as a team as well as the growing trend toward telemedicine.

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.

We were impressed by the group's leader, Ann Rich, and asked her how she got involved.  She lost her father to Parkinson's a few years ago and feels committed to helping others with PD to honor his memory.  She also shared how she wished that palliative care had been available for him as there had been avoidable problems.  It was obvious that she had a real connection with her group.  At that point, everyone in the room expressed their gratitude for her caring and service.

In spite of the challenges we experienced on our journey, the joy we experienced in our interaction way more than made up for it.  It was a good day. 

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Kirk Hall

What is neuro-physiology?

Neuro-physiology combines the use of a neurofeedback device that records brain frequency with a mobile app that guides the user through an exercise program.

Neuro-physiology enhances exercise helping fend off Parkinson’s symptoms. Here's how:
Reducing brain frequency during exercise makes exercise more effective. Exercise prolongs the good effects of the dopamine that remains in your body (or is taken orally).


Using the FocusBand neurofeedback device, you train your brain to be in a better state during exercise. This makes the effect of the exercise on your body better, allowing the existing dopamine to be more effective. This has the effect of increasing a Parkinson's patient's "on time,"reducing or abating some of the symptoms of Parkinson's.
 
 The Just Do Something Every Day mobile app provides a custom exercise program that, when used in conjunction with FocusBand, guides the user through a carefully designed exercise program. Each exercise is chair, wall, or floor supported so balance issues are reduced. The program was designed by Tom House, PhD. Tom is a former major league pitcher and is currently one of the world's most renowned throwing coaches, working with Tom Brady, Drew Brees, Matt Ryan, and scores of major league baseball pitchers.


T Together, FocusBand and the mobile app will retrain your brain during a short daily exercise program to get the best possible benefit from the exercises. Just Do Something Every Day is setting up a "crowd trial" to collect more scientific data on neuro-physiology.

More information on the complete program and crowd trialing can be found at www.justdosomethingeveryday.com.

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