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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

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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