Why you need to track your Parkinson’s symptoms
When you have Parkinson’s disease, you’re one of a kind.
That’s because every person’s set of symptoms, response to meds, and rate of progression is unique.
This makes it challenging for even the cleverest of doctors to find the best treatment for their patients.
But did you know that the more you help them, the better your treatment will be?
Tracking your Parkinson’s symptoms is part of advocating for yourself. Research has shown that such self-advocacy improves your care and quality of life while reducing symptom burden.
**Read on for my free tool that will make this easier to do.**
One important way to help clinicians is simple:
Give your doctors specific details about your symptoms.
Consider this possible conversation between a doctor and patient during a routine checkup:
(Doctor comes in, says hello, sits at computer.) “Let’s see what we’ve got here. Anything new to report?”
“Hi doctor, I feel like things are getting worse.”
(Doctor taps on keyboard.) “This is what happens with Parkinson’s. Tell me what’s going on.”
“Well, I seem to be tremoring more.”
(Doctor speaks kindly.) “Understandable. What do you mean by ‘more’?”
“I just feel like it’s more than before. My hand still shakes when I do things. And I’m tired all the time.”
(Doctor’s brow furrows.) “How many hours of sleep are you getting?”
“I’m not sure but it’s never enough and I wake up really early.”
(Doctor looks frustrated.) “How early?”
“I don’t really know, but my stomach hurts a lot, too.”
(Doctor’s keystrokes are more forceful.) “Can you tell me when and where your stomach hurts?
“Some days a lot and other days a little. Somewhere around here” (rubs entire torso).
CUT!
OK, this is an exaggeration, but from this conversion, what does the doctor know?
That the patient is shaking more, sleeping less, and living with a perpetual ache somewhere in the midsection.
What the frazzled neurologist needed, and was not getting, was specific details. How could this doctor possibly treat this patient?
As people with a moving target of a disease, it’s our responsibility to give clinicians something to work with.
“Help me help you.”
Tom cruise as Jerry Maguire
Symptoms need to be tracked daily, for several days before the appointment.
There are apps out there that can help you track Parkinson’s symptoms and send data to your doctor.
But I prefer the simplicity of a good ol’-fashioned symptoms tracking sheet.
During the 10 days before my appointment, I fill out a sheet with notes, such as when I took my medications, if and when they wore off, and details about any continuing or new symptoms I’m experiencing.
The first time I brought it in, my neurologist said she wished more patients would do something like this. (Forgive the “teacher’s pet” moment.) She adds each sheet to my file.
I’m offering a printable Parkinson’s Symptoms Tracking sheet that I created – free to email subscribers.
I’ve kept it pretty basic. It’s one page long, with an optional second page, and it is very easy to follow.
If you’d like to subscribe to my biweekly newsletter, see the box to the right and up (on a computer) or scroll to the bottom (on mobile).
If you already subscribe, just send me an email at unshakablehiker@gmail.com, and I’ll reply with a PDF for you to print.
It may not be a perfect way to communicate with the good doctor, but it’s better than answers like “my stomach hurts a lot.”
Make the most of your doctor visits by being prepared. Tracking Parkinson’s symptoms is easy to do. Get the download.
References and photo credits
Thomas, T. H., Donovan, H. S., Rosenzweig, M. Q., Bender, C. M., & Schenker, Y. (2021). A conceptual framework of self-advocacy in women with cancer. Advances in Nursing Science, 44(1), E1–13. Photos by Cedric Fauntleroy and others.
