I’m always game for participating in any research that might further knowledge about Parkinson’s Disease. So, early on, I registered on the Michael J. Fox Foundation Trial Finder, which is a central database to match up PD trials and research volunteers. (Psst…even if you don’t have PD, they still need you as a control.)
So that is how I ended up (briefly) participating in this study: “Smartphone-PD: Using Mobile Technology to Track and Quantify Key Characteristics of Parkinson Disease in Real-Time“. This trial was a test of a mobile phone app which had two purposes:
–Active monitoring of PD symptoms, via twice-daily tests on your phone (more below).
–Passive monitoring of PD symptoms, on the assumption that you were carrying the phone around in your pocket. (I do.)
You know the privacy warnings you get when you start to download an app? The ones that say, we’ll need to know your location, your phone number, etc.? This app had a long laundry list of privacy warnings, including tracking your phone calls and text messages. Whoa….That was the point when I wondered if this was actually some scam from Bulgaria, and thought I’d better contact the research coordinator. He told me that the content and phone numbers were not being retained; researchers were using the frequency and duration of calls/text messages as a stand-in measure of “social activity”. (Depression can be a symptom of PD.) I told the coordinator I found this an invalid hypothesis: I consider myself socially active, yet I make relatively few cell phone calls and even fewer text messages. (One wag pointed out to me that perhaps they were actually measuring whether you still had the dexterity to text!) This also seemed an odd hypothesis when nearly all PD people are over 60, and thus, more inclined to still use landlines.
After talking with the coordinator, I still had some misgivings, but decided to go ahead and do my bit for science. I even turned on the passive monitoring (the measurement of the calls and text messages). Uh oh….the first day, I realized my battery was sucked dry by early afternoon. This was because the app turned on the screen so that it never dimmed. Even when I manually changed the screen back to a 15-second timeout, the app would still revert to no timeout. So I reported to the coordinator that I needed to turn off the passive monitoring part.
But I still was going to do the active monitoring part. Most PD people see their neurologists every six or twelve months. The idea here was to get daily monitoring of symptoms (twice: before and after meds). Here’s the tests, supposed to take about five minutes :
–Voice: Say “Aaah” into the phone as long as you can. (Shakiness and softness in your voice can be a PD symptom).
–Balance: Put the phone in your pocket, wait for it to vibrate, stand up straight. Phone vibrates again to end test.
–Gait: Put the phone in your pocket, wait for it to vibrate, walk about 20 yards. Phone vibrates again to end test.
–Dexterity: Numbers 1 and 2 appear in side-by-side squares on your phone. Tap them rhythmically until they disappear.
–Reflexes: Square appears that says “Press!”. Press as soon as it appears, release as soon as it disappears. Square appears several times, for varying durations.
After you’re done with the round of tests, the results are uploaded to a secure database the University of Rochester, which was sponsoring the study. I guess if this were an operational app, it would be uploaded to your neurologist’s electronic records.
But alas, I needed to drop the entire app. I realized I was not able to make phone calls on my cell. Once I uninstalled the app, poof! problem solved — I could make calls as normal.
So my phone is back to health, although it’s probably getting to be time to replace my three-year-old phone (groan…). And I am in fine health, enjoying summer’s hiking and camping. It would have been interesting to see the results from this app, but it’s probably just as well I don’t see objective measures over six months (the duration of the study) — I sure don’t want to see any declines!