Parkinson’s Disease is an incurable progressive movement disorder that leaves the body unable to move. As anyone with PD will tell you, the disease affects you differently each day, and this leads to added stress, frustration, and depression. After a while of living with the illness, it’s difficult not to think you’re at your life’s end each time a new symptom appears or an existing symptom worsens. You begin to think, “Is this a part of a temporary phase, perhaps caused by over-exercising or drinking a bit too much, or am I really at a new stage in the disease?” It’s difficult to think rationally when your body feels like s%*# and is not cooperating.
I’ll be the first to admit that Parkinson’s has made me a more irrational person. When I can’t get myself out of bed in the morning, or my morning medications don’t kick in within the usual time frame, I double-check to make sure I’ve signed my will and start thinking about how my wife will get along without me. Of course, this is the disease talking and is complete nonsense. People don’t die OF Parkinson’s, they die WITH Parkinson’s. PD won’t do me in, but don’t tell that to my irrational self.
While Parkinson’s currently has no cure, and progression is inevitable, there is one thing proven to slow the progression: exercise. Exercising at least twice each week for at least an hour can have neuroprotective effects and improve symptoms. But even when I exercise, there are days I won’t feel like getting out of bed, and my irrational brain may try to convince me that the exercise isn’t working, which could lead me to quit exercising altogether — the classic downward spiral.
Another problem with Parkinson’s is the low-information visit with the neurologist. Most people with Parkinson’s only see their movement disorder specialist once every six months or once per year. Here is how a typical 30–40-minute visit goes:
Doctor: How’s everything been going?
Me: Ok, I guess.
Doctor: Anything new since the last visit?
Me: I think my memory has gotten a little worse.
The doctor then proceeds to furiously type her notes for five minutes and then gives me a physical neurological exam — “Follow my finger with your eyes,” etc. She will sometimes recommend a medication change or give me some advice on my diet. That’s about it. For a disease with symptoms and symptom intensity that change daily, this visit is not enough to capture the whole picture. My neurologist hadn’t even seen my worst symptom, a nasty (and occasional) dyskinesia in my left leg, until three years after it started.
Something told me there had to be a better way to manage this disease. There had to be a better way to know whether my disease was getting worse, or if I was just having a bad day. I wanted to know whether exercise was really helping to keep the really bad symptoms at bay. I wanted to be able to show my doctor the data on how my brain was behaving as it related to my physical, cognitive, and emotional state on a daily basis.
I checked the Parkinson’s-related literature and found a variety of worthy bio-markers to track, but there was no book, app, or any other product that could do what I needed. I wanted to track my physical/cognitive/emotional progression over time, understand how things like exercise and medication timing affected my symptoms, and combine all of the data into a neat printout for my doctor to look at during our short visit and from which she could glean some insights.
Nothing like this existed. So I created it.
I had experience as an iOS developer, so I could make an iPhone app, but first I needed to know what I was building. I began following the Quantified Self and Biohacking movements and taking what was useful (lots of research on how to collect and use your body’s data) and left what wasn’t (lots of pseudo-science and wishful thinking about supplements and expensive gadgets). I began tracking data points in a journal — basics like when I took my medications, how long I exercised each day, and the times I felt off and on. With the help of a neurologist, a neuropsychologist, physical therapists, and others with Parkinson’s, I developed several activities (based on tests used by doctors and those in the biohacking community) to collect data on central nervous system function, memory and cognition, voice loudness, and emotional state. I then created a beta app and tested it with Parkinson’s friends in Seattle. I took their feedback and reworked the app until it was exactly the app we all agreed we needed.
The result is Parkinson’s LifeKit for iPhone. The app includes activities that you can use daily to track a variety of biomarkers, the ability to track medications, and a way to combine the data into a report for your doctor to review for a more personalized medical experience. Each data point can also be tracked within the app itself, either as a chart or as the raw numbers. Finally, if you’re a data geek, you can also export your data to an Excel-compatible file to run your own advanced analyses. The app can be as simple or as detailed and involved as you want to make it.
I began using the beta of the app in December 2016, after I had added the various tracking activities. I began recording each time I took medications (the app makes it easy to track difficult and irregular medication regimens) and tracked my central nervous system health several times per day, and my cognition and emotional state once daily.
After a month of tracking my health, I noticed some trends.
First, my central nervous system was always worst in the morning. I knew this intuitively — I’m not a morning person — but this confirmed it. Now I never take a meeting or set an appointment in the morning, and this has helped relieve a bit of stress knowing that I don’t need to be on when my body just doesn’t want to be on.
The second trend I noticed is that, on days that my overall step count was above average (I use the free app Human to track my steps, and Parkinson’s LifeKit can read that data through Apple HealthKit), the next day’s step count was always below average — always. After thinking about this for a while, it came to me that when I overdid it on the exercise one day, I would be more tired and less capable of meeting my step goal the following day. This has been an important insight. Using step count data as a proxy for stamina and the short-term effects of exercise on my body, I have rescheduled my exercise on days that I don’t need to be at full-energy the following day.
The last trend I noticed — and this was the most unexpected of all — was a general upward trend in my central nervous system health. I had recently begun a twice-weekly exercise class geared toward people with Parkinson’s, and my central nervous system (as measured with the app’s finger tap test) was actually improving. This told me, in my own personalized study, that exercise was benefiting me over time, even if in the short-term exercise made me tired the next day. This was the insight that made me realize that I had stumbled upon something incredibly useful for the Parkinson’s community.
These days when I wake up feeling out of it, and I feel like I can’t trust my own emotions to tell me how I’m doing, I look at my 3-month chart and remember that I’m not doing too badly and that today is just an off day. This has alleviated a lot of worries and has made me rethink the idea of getting Deep Brain Stimulation surgery, at least for a while. I can look at the objective results in the app and not work myself into a panic that my body is failing fast. And for someone who sometimes still thinks irrationally about the disease, this has added a new level of comfort to my life.
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.