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!]
When was the last time you laid on your back, on a warm summer day, and watched the clouds morph shapes as they drift across the sky? I had such an opportunity this past weekend, and as I lay there, full of awe and experiencing the deep sensory pleasure of a warm breeze, it struck me that it had been a looong time since I had embraced deep, conscious rest.
As a small business owner, homeowner, faculty member, neighbor, friend, daughter, sister, aunt and wife, there’s always something to do. In fact, as I lay there being entertained by the clouds, ostensibly doing nothing, thoughts of my to-do list encroached on this moment of repose. Instead of taking out my phone to make notes, I just took a deep breath and said, “not now.”
The time spent doing nothing was short lived – had to go make breakfast – but it got me reflecting on deep rest (other than sleep), and its role in creating balance in the mind, body and spirit.
It’s nice that there’s a federal holiday celebrating our labors: we labor to contribute to community, economy, family and a sense of our human identity. But do we celebrate labor/doing/working too much, so that it is out of balance with deep rest?
Rest Math
How much rest do we need to thrive? For most people, 7-8 hour of quality sleep is needed to rejuvenate and detox the body. But what about intentional rest, or single- focus activity?
Let’s say, hypothetically, that for long-term wellness sustainability, that energy-in and energy-out needs to be 50-50.
If we sleep for 8 hours and work for 8 hours (balancing each other out), that leaves 8 hours that needs to be balanced out. For every one of those hours before and after work that we are active, we would need an equivalent number of hours that we are at rest. Say, 4 hours of activity and 4 hours of rest. That’s a lot of resting!
Perhaps the great spiritual and meditation teachers are on to something when they suggest 20 minutes twice per day for inward focusing. This time for concentrated focus allows the brain and body systems to calm down and attune themselves, ultimately allowing for better executive function and allocation of resources.
What qualifies as deep rest? (IMHO)
Meditation, any type.
Yoga Nidra, or Non Sleep Deep Rest (NSDR) guided relaxation
Laying down looking at the sky
Walking in nature without a purpose or agenda (Forest Bathing)
Taking a bath
Watching a fire (in a fireplace or bonfire)
Sitting and watching the world go by (say, people-watching sitting in a café)
Reading material that takes the attention inward to explore self-understanding
…what do you do?
In our day and age, it certainly seems an impossible luxury to make time for “doing nothing,” especially on a regular basis – I know I often feel the need to doing something productive, even if it is cleaning the house or preparing a meal. But maybe it is essential to balancing out the pull and turmoil of the outer world.
With my programs and 1:1 clients, I encourage the development of a meditation or reflection practice such as journaling. When it comes to quitting sugar, I often describe the benefits as similar to becoming a tennis pro. When someone is new to the game of tennis, they spend most of their time reacting to what their opponent does, running all over the court. But as one gets better and better at the game, one begins to anticipate the direction of the ball, so much so that one can see where the ball is going to go by observing how the opponent is standing and the angle of the racquet, at the moment the ball comes into contact with it. Now the player sees what is going to happen, and can go to meet the ball.
Meditation helps us create more space between stimulus and response, allowing for choices to emerge. Include space between seeing the cookies (or thinking about them) and actually reaching for them.
I don’t think taking a bath or watching a fire is necessarily the same as meditation, but the calming effects on the nervous system must be similar.
If you don’t already have a contemplative or rest practice, try taking just 5 or 10 minutes to start, to calm your breath and focus your attention every day for a week, and see if it doesn’t shift things for you.
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