Parkinson’s changes your body gradually, and not always worsening it when it does. I once had a terribly increased tremor that would not ease. I thought I was in the next phase of the disease. Then after about a week, the tremor suddenly went away. It turns out I was going through a very intense and stressful week and my body was reacting to this stress.
The Arrow of the Disease
The direction that Parkinson’s normally wants to go is to progress forward. This is what we call the arrow of the disease, where it tends to go. The arrow of Parkinson’s tends to move through the various stages, from one, with minor symptoms, to two, three, and four, with moderate symptoms, and five, with severe symptoms and what we call the “end stage,” where being unmedicated is bad, being medicated is less bad, and having an advanced therapy like Deep Brain Stimulation or the Duopa pump makes symptoms the least bad.
How Do You Know Where You’re at?
There is a phrase in business that is taught to managers, and this phrase fits managing an illness as well. “You can’t manage what you don’t measure.” This is so true! Let’s suppose you wake up one day and you’re feeling bad, your meds aren’t working right, and you feel a little depressed and not sure why. Is this a new phase of the disease? Is this just a blip, perhaps a stressful moment in your life manifesting itself in your body as increased symptoms? How do you know?
Here’s another scenario. You visit your movement disorder specialist for your semi-annual or annual appointment. You seem a little off from your last visit – maybe you’ve had a fall, maybe it takes you longer to get up the stairs – and then your doctor asks you the question that could be small talk, or could be a way of gauging your symptoms, “so, how have you been doing since last we met?” This is not small talk. This is your chance to tell your doctor everything that’s been going on since last time. “I took a fall,” “I’ve been having dreary mornings,” “I feel like I don’t have as much energy.” With most appointments lasting about 20-45 minutes, there is no time for the doctor to go in depth with your case. Her response, “ok, let’s increase this, decrease that, and make an appointment for 3 months from now for a follow-up.” How does she know this will do the trick?
It’s Time To Measure Your Disease
Well, a movement disorder specialist knows when certain things happen, it’s likely because of x, y, or z. If they are even the least bit competent, they have seen hundreds of patients, and they notice trends. But wouldn’t it be great to actually measure common symptoms like tremor, mood, and cognition so that you can report a more accurate picture? Some people already do this, using a journal, they see how long it took them to do a Sudoku or crossword puzzle, and write the times in their journal. Or maybe they jog a lap at the local school’s track and write down that time in their journal. Or they might measure their mood from 1 to 5, and write that in their journal. This is a great starting point that will give your doctor more to work with.
A Better Way
If you are at all into technology, or at least use a smart phone, there are also a wealth of apps that could do this tracking for you. There are apps you can use to track the loudness of your voice, tremors, cognition, and much more. When we discovered these apps, we realized that there was no app that could do it all. You would have to download several apps, some free, some paid, some that keep your information private, and some that require you to share your data with pharmaceutical companies or commercial researchers who fund the app. So we at Parkinson’s Warrior decided to do something about that.
The Best Way We Know Of
We created Parkinson’s LifeKIt, a suite of integrated tools within a single app that will track everything from your physical health, to your emotional health, cognitive health, meds, memory, tremor, dyskinesia, and a lot more. You can start out small, tracking one statistic daily, and move up to track everything when you’re ready. Then you can print out a one-sheet for your movement disorder specialist that will show them all they need to know in one sheet of graphs and information, or you can export your raw data to a spreadsheet format so you can make your own study and dig deeper on some aspect of your health.This is also useful if you’re doing a program like Rock Steady Boxing or working with a physical therapist – are these activities really improving your symptoms? There is one way to find out: measure your symptoms daily and see if they are improving over time.
Conclusion
Remember, you can’t manage what you don’t measure. Whether it’s using a journal to keep track of a few symptoms, or using a full-blown app that will do it all, we encourage you to start tracking today and present your results to your doctor at your next appointment. This will ensure that you get more personalized care, and live a longer, healthier 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.
