About
About
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.
See Recent Posts from my Health Coaching Blogs
[PD Blog starting soon!]
When No means Yes
When No means Yes: Why the ability to re-frame is critical if we want to grow and change.
We have a small kitchen; the sink is between the coffee station and the mug cabinet and the milk-foaming device, and the stove is between the mug cabinet and the refrigerator. When my husband makes coffee with almond milk, and then puts the heated milk on the stove, and I’m trying to make tea (in the cabinet next to the mugs) with almond milk on the stove, well, there’s a traffic jam.
That’s one of the reasons why I like to get out of bed before my husband – so I can slowly, meditatively, go through my morning tea preparations.
Suppose either of us is distracted with the tasks of the day or annoyed at the news or social media (that we erroneously glanced at). In that case, we tend to get in each others’ way, like a basketball player moving up the court with the ball, jockeying with the other team’s defense. We can feel the frustration coming off each other as fumes.
The other day, before dawn, we found ourselves stumbling around in the kitchen. After a near-collision, I said, “See, that’s one of the reasons why I like to get up before you.”
That’s when, to my surprise, my husband replied, “What if we considered it a dance?”
Well, that stopped me in my tracks, and I took a big sigh. “Yes, of course!” It changed the energy and lightened the mood.
This is re-framing at its best, and a critical skill to develop when we want to change or evolve our behavior.
When No means Yes
In the realm of improving our health behaviors, we obviously need to say no to the detrimental behaviors while saying yes to the positive ones.
But saying no to ourselves 10+ times per day feels punishing and depriving and is a drain on our willpower.
No, I’m not going to have a flavored yogurt for breakfast.
No, I’m not going to have that raisin toast.
No, I’m not going to stop at the coffee shop for a muffin.
(and on and on)
But all those “no’s” are actually “yesses” in disguise! Every time we say no to something we think we want (that might not be so good for us), we are actually saying yes to who we want to become.
Yes, I’m going to forego the yogurt and make some eggs.
Yes, I’m going to add veggies to those eggs for the phytonutrients and fiber.
Yes, I’m going to drive by the coffee shop and wave and say, “not today.”
Re-framing takes our struggles and challenges and turns them into a positive mindset that supports and fuels our goals. It can make the changes we want to see a playful game instead of drudgery.
When you realize that you have the power to change the way you think about something, a sense of freedom ensues: we are no longer bound to feelings of frustration or denial and instead are free to choose how we want to think, feel, and act.
This is empowering. We are no longer a victim of our circumstances (wanting a treat and not letting ourselves have it), but rather actively creating the future we want for ourselves.
You can see now that it’s not about the food itself, or even the feeling of wanting the food, but rather how we are thinking about ourselves that makes all the difference.
Re-framing rolls right into beliefs. If you think and believe that you are someone who “has trouble saying no,” or who “has always had trouble with my weight,” then my friend, that is exactly what you will continue to get.
Try a re-frame: “I’m someone who used to have trouble saying no to croissants, but now I’m building my future and finding pleasure in something else.” Or, “I’m someone who used to believe that I had trouble with my weight, but now I’m learning about the foods and situations that trigger me so I can be prepared.”
All change begins with the belief that change is possible.
Then we envision what is possible.
Then, we learn some skills.
Then, we practice those skills.
Then, before you know it, your idea of who you think you are has evolved into who you are becoming.
Changing is much easier when you move the change upstream, from behavior to belief, which can be as simple as changing a No to a Yes.
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