Many have initiated conversations over the years around the nuance of their individual disease with the question around whether their experience would be helpful for research. MJFF believes it can! In essence, your day is our data so we have launched a significant program to allow you to contribute data in the search for a cure. This project is high risk in the sense that we need tons of people to participate. Please consider getting involved!


MJFF Pilot Study: Fox Insight Wearables

Wearable devices — smartphones and smartwatches — represent a new way to passively collect your data. The Michael J. Fox Foundation for Parkinson’s Research has recently launched a wearables component of its new virtual research hub, called Fox Insight. The Fox Foundation is conducting an exclusive pilot of Fox Insight Wearables, where your participation — simply by wearing a watch and carrying your smartphone — will help us capture new data about the lived experience of Parkinson's disease (PD).
Until now, it has been difficult for researchers to capture a truly accurate picture of the day-to-day patient experience, slowing progress toward a cure. Today, wearable devices have the potential to revolutionize how we collect this critical information from patients.

How does the study work?
1. Ensure you meet the eligibility criteria and then fill out the form at http://www.michaeljfox.org/wearfoxinsight/enroll.
2. Receive your complimentary Pebble watch in the mail.
3. Install the Fox Insight app on your phone.
4. Wear the Pebble watch for at least six weeks.

Who is eligible to participate?
Individuals who meet the following criteria are eligible for enrollment:
• Have Parkinson's and are 30+ years old.
• U.S. resident.
• Own an Android smartphone (not an iPhone). Eligible devices include Samsung, HTC, Motorola, LG, etc. version 4.2 or later. You can check on your Android by going to Settings > General > About phone > Software Info > Android Version.

How to enroll:
Fill out the simple form at http://www.michaeljfox.org/wearfoxinsight/enroll. If you are already registered on Fox Insight, please make sure to use the same email address you used to register for Fox Insight. You may contact wear@foxinsight.org with any questions.

Thanks! Debi

Debi, I'd love to do this, but due to severe tremor, can't use touchy smartphones. Still using my old sturdy dumb flip phone. Any suggestions, solutions?

In addition to the research being conducted via smart watches and smart phones, there is an online portal for Fox Insight that collects information you submit about your PD experience. Visit www.foxinsight.org to get started.

Hope this helps.

Debi

If I'm reading this correctly is appears an iPhone or Apple Watch cannot be used? Is that right?

Correct.

You should be seeing "data collection for Parkinson's" using a iPhone in the future. https://www.apple.com/researchkit/

EDIT: There have been iPhone & Parkinson Studies done in the past.

Study that can use your input and voice:
http://www.parkinsonsvoice.org/

A friend, with late stage PD, is still a texting fiend. Amazing to watch her fingers.

I have large hands, so I can curl fingers leaving right index finger out, but most of my right hand contacts the left hand cradling the phone. Helps stabilize so I can use the smart phone.

You can get a fuller size keyboard and mouse to use with your smart phone. Admitted not travel friendly, but make it easier to text. I used my computer to update the phone/list and synch.

Debi, I realize there are other ways to contribute, but was hoping for some tips or adaptive tricks/devices for using smartphones as well, such as TexasTom mentioned in his response. Unfortunately his suggestions won't really help me, due to my huge tremor, but might help some others.

Thanks for responding, TexasTom. Don't know if you or your advanced PD friend has a severe tremor, but mine is pretty bad so I think I'd just get frustrated trying to make it work. And if I had to hook up keyboard & mouse to a smartphone, I'd just continue using my trusty old computer with SteadyMouse installed (per other thread here on typing tips), plus my usual dumb flip-phone!

A huge thank you to the original poster. I'm wearing my Pebble Watch at the moment. It arrived yesterday, and I had forgotten why I didn't like anything on my wrist, but determined to give it a go for a week.

Peony -- in another thread I mentioned Google Voice Commands. That allows you to verbally do a lot phone functions. "OK Google remind me at 8am to call Jack" (it will load my calender, and give me a reminder in the morning.... which is great as I didn't fumble with anything!)

Just an update on the Fox Insight Wear.

At first my watch didn't seem close to tracking my tremor. Yesterday the software updated to 2.6.0 So rather than recording "2 minutes" yesterday showed 26 minutes. While I tremor more than that, they are improving the algorithm.

They have also added a "night time" section to track movement. It shows I'm good from 10pm until 2am. Then lots of movement, pretty obvious when I get up at 2:30 for half hour, then finally at 4:00am. I already track that with my CPAP data, but handy to see how much sleep/rest you really get.

Irony... to get reimbursed for CPAP, you have to document five hours of use a night. So when I wake at 1am... I just remain in bed until 3am with CPAP.