When I was first diagnosed with Parkinson's Disease in the late summer of 2024, I knew that it was coming. Not only had I been experiencing symptoms for about 5 years -- lack of arm swing when walking, slowness, stumbling, lost of strength in my right arm and leg...-- but because it runs in my family: both my mother and father were diagnosed with PD in their later years, and my sister in her late 50's. I haven't tested for the marker gene, because whatever the marker is, it just represents a tendency that can be triggered or subdued by environmental and lifestyle factors. That's epigenetics, and the reason to be proactive: What I do matters.
Epigenetics is the study of how the environment and other factors can change the way that genes are expressed, beyond how the DNA is written. About 15% of Parkinson's patients have a family history of the disease, while only 5-10% are thought to have one of the genetic mutations that can predispose one to the disease (LRRK2, PARK2, PARK7, PINK1 or the SNCA gene).
The Before Times
Professionally, I work in the field of Public Health Communications (aka Behavior Change Communications or Social Marketing), and teach in the Master of Public Health program in the Larner College of Medicine at the University of Vermont. I have a doctorate in Educational Leadership and Policy Studies and a Master's degree in Media Ecology. When I trained to be a Health Coach in 2015, the background in the theories of behavior change and research-based best practices, as well as curriculum development, set me up for taking action on the epiphany I was about to have.
In 2016, I was researching a book that brought together these two interests: media and health. The focus was how the media--and advertising in particular--has created a food culture where convenience is the predominant value. In particular, I was deep into studying the tactics of Big Sugar, and how the repetition of images of kids eating sugary cereals on television has made parents and kids think that cereal is an easy and healthful breakfast -- when nothing could be farther from the truth -- when I had an epiphany in a grocery store.
I was finished with my grocery shopping and looking for a snack to eat in the car on the drive home (that's why they put the candy by the checkout!). As I was reaching for the dark chocolate peanut butter cups, I heard myself say, "You can have that, you worked out today." Now, that's something I've said to myself a hundred or a thousand times before, but since I was studying the sugar industry I was able to identify that it wasn't my rational brain talking. That's when it hit me: That's the Sugar Talking! I stood there in the middle of the market for several minutes, dumbfounded. Have I been addicted to sugar this whole time and not realized it? Are all the rationalizations and justifications for having treats consistent with other forms of addiction? How is it possible that sugar is talking to me? It was right then that I decided to change the focus of my research from advertising and policy to biology. And I was going to unravel my sugar addiction, and teach others how to do it too.
It took me two years to heal my dependency on sugar, and I created my first course Breaking Free from Sugar in 2019. To date, over 4,000 people have taken that course, with over 95% of them reporting they were successful reducing their sugar consumption and planning to continue with a sugar-minimal lifestyle. Then I wrote a book about it called The Sweet Tooth Dilemma, which became a bestseller on Amazon.
Because of that experience of healing took two years until I felt like I was on solid ground -- changing 35 years of habits, beliefs and biology doesn't happen over night -- I figure that might also be the case with PD. if I dedicate myself to learning, and experimenting with changing all the lifestyle and environmental factors within my control, that I can reverse the symptoms of Parkinsonism. And I'm giving myself two years to try (though really I won't stop trying :).
Where I am now
When I was officially diagnosed with PD in the late summer of 2024, I went through an emotionally tumultuous period, alternating self-pity and defiance. I joined the Facebook Group on Alternative Healing for Parkinson's, started following organizations and websites (see Resources tab), and generally started experimenting. I had heard that vigorous exercise was one of the only documented ways to slow the progression of the disease, so I started raising my workout game: got a Peloton bike (to use in addition to the weight training classes) and started Rock Steady, a boxing program for people with PD.
Then, in the late fall, I developed a habit of easily-triggered crying. The smallest mention or thought of having PD would send me into uncontrollable waves of tears. It felt like they were coming from my chest. Just flooded with emotions, a mix of grief, feeling sorry for myself, opportunity lost, feeling like something had been taken away from me, and even a bit of resentment -- why me, I'm so healthy?!
The months of crying came to a peak on New Year's Eve. We went out to a Talking Heads tribute band, with the youthful excitement of dancing in the New Year. Except the minute I stepped on to that dance floor, the sobbing started and barely let up for several hours. You see, I was a dancer -- not a professional dancer but a freestyle dancer, who loved to go out dancing and lose myself in the music. I used to pride myself on being able to dance to any type of music. It was a cherished form of tension release, creative expression, and often a workout too. It was the one place I could get out of my head and into my body. But on New Year's' Eve, my body was having none of it. I could barely sway to the beat let alone dance to those well-loved songs in rhythm..
I suppose that was my emotional rock-bottom, because I woke up the next morning with resolve:
- I'm not going to feel sorry for myself anymore
- I'm going to learn and do everything I can to feel the best I can
- I'm going to figure stuff out and share it with the PD community
I am sharing my journey publicly in case I actually am successful in reversing the disease there will be a record, and also to let others with PD share in my up days and down days. We need to stay resilient.
My approach is systems-based, and starts with the assumption that the rise of PD (and other neurological disorders including Alzheimer's) is not natural to ageing: it is our food, our environment, and our lifestyles are creating disease in the body. It is a functional medicine/nutrition approach that looks to address the root causes rather than merely address symptoms.
I don't have anything against addressing symptoms directly too -- I am currently taking a small dose of carbidopa/levidopa.
It is my current mission: to explore, test, and share what works.
Thanks for reading.
[PD Blog starting soon!]
There’s a lot of talk of morning routines out there; those things you do, often in a specific order, to get all systems moving in the same direction to optimize your day. Common elements in the morning routine include: hydrating, meditation or a contemplative practice, journaling, exercise, hygiene and nourishment.
These elements do indeed make for an aligned and energized start to the day, and become as essential to a productive day as having priorities.
But as devoted as I am to my morning routine – several decades of practice – everything about my experience of daily living up-leveled when I started asking one question:
What would make this a great day?
When you pose such a question to yourself, so many things happen in your brain! For one, it engages the imagination. The imagination is a divine trait that is sorely underutilized by many of us. When you engage the imagination, it lights up the brain with possibilities…and those possibilities are motivating.
Of course, you can use your imagination negatively as well, by imagining a stressful or unrewarding day. And guess what? What you imagine happening is more likely to happen!
I’m not talking about pie-in-the-sky manifesting here, such as imagining winning the lottery. I’m talking about imagining the things you will do and how they will make you feel – the things within your domain that you have control over.
There’s some neuroscience to this. The brain is a prediction machine! Since its primary job is to keep you safe, turns out that predicting is one of the primary ways it does that. All. Day. Long.
Your brain is predicting when you read a restaurant menu: What do I feel like eating, or, What will bring me pleasure?
Your brain is predicting when you decide to exercise: I’ll feel better if I do this, or, avoiding the pain of guilt or disappointment can be equally motivating.
Your brain is predicting that you’ll feel better after you do the dishes.
Your brain is predicting that you’ll feel accomplished (and less stressed) if you complete your To Do list.
This trait also works to our detriment when it comes to bad habits: your brain predicts that the emotional pain will go away if we eat a pint of ice cream, for example.
This is the realm of “self-fulfilling prophesies,” which we engage in whether we are consciously aware of them or not.
Disappointment, then, is merely a reward prediction error.
Harnessing the power of prediction is a powerful tool for shaping our days, the experience of our days, and ultimately, whether we find satisfaction in our days.
Seek and ye shall find
Asking yourself What will make this a great day? is fundamentally different from setting an intention or goal. Instead of telling yourself what to do, think or feel, somehow imposing this wish upon ourselves, asking the question is an invitation to engage your whole being in creating the experience you want to have.
In many ways this inquiry practice is similar to a gratitude practice. With a gratitude practice, we make a habit of recalling the things we are grateful for, eventually priming our brains to look for and recognize gratitude in a multitude of small things. And so it is with a daily inquiry of What will make today great? We are priming, or preparing, our brains, programming it to look for certain things.
You know how when you’re looking for a new car, and you’re considering a specific model or color, you suddenly see them everywhere? Or a piece of clothing? This is your brain’s filtering at work – there’s just so much information to process, visual information in particular, that the brain needs to filter on what’s important. It’s not that there are more of these objects, it’s just that we’ve programmed our brains to notice them. This is known as the “Baader-Meinhof Phenomenon,” or more simply, “frequency illusion.”
We can consciously or unconsciously program our brains to notice certain things. Some people who are perpetually negative don’t realize that they can choose to see different things. The negative things they are observing will still be there, but perhaps they can look for solutions or alternatives as well.
With all the negative things that are going on environmentally and socially, it can be easy to just focus on how everything is so messed up, and look for blame in all the familiar places. But with a little practice, it can also be easy to focus on the small kindnesses that people do every day to support the earth and their communities.
When we consciously or unconsciously look for the things that confirm our point of view, this is known as confirmation bias. Or as my dad used to say, “When all you have is a hammer, everything looks like a nail.”
When it comes to shaping our day with the question of What will make this a great day?, there is nuance, of course. I have found it to be much more effective to answer the question with feelings attached to actions, rather than just actions alone.
For example, here’s a typical response to the daily question What will make this a great day?
In other ways, this sets us up to play in the cosmic game of creation, helping us feel resilient in even the most adverse of circumstances.
And if you’re wondering what this has to do with quitting sugar, health or lifestyle improvement, here are some ways you can answer the question, What will make this a great day?
You have the power to change your health trajectory! If you want to learn more about how to master your thoughts in service of your health goals, please use this link to find a time on my calendar for a Pep Talk or Clarity Call.
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