The Power of Humility

Yesterday was magical. One of those days where you go to bed early and dead tired yet happy that you were part of something that might make tomorrow a bit better for some.

You see, yesterday was the first Parkython event, a day long ideathon/hackathon run for and by people diagnosed with Parkinson’s diseases, but with a big lift from Rune Labs. Around 50 designers, technologists, biologists, hackers, caregivers and people diagnosed came together to listen, share ideas, and brainstorm new ways to try and help the over 50 million individuals worldwide estimated* to be afflicted by PDs.

So, how did it go? Well, I won’t bore you with everything that we did, but I did want to give a quick overview of the two best ideas we hacked together over the course of the day.

(Note: we divided ourselves into six randomly assigned groups that each had roughly four hours to prepare then present what they had worked on. We then voted as a group on the best ones, seen below)

The Runner Up

DPACV
(Dashboard to Prepare for a Clinical Visit App)

I personally found this idea very compelling as it gives patients a way to send focused and constructive messages to their clinicians prior to their clinical appointments.

As we discussed in length yesterday, the time people diagnosed get with their clinicians is often the most valuable resource we have and we as a community need to do more to ensure that time is well spent. By giving people diagnosed a portal with which they can give directed feedback to their clinicians in advance of their visits, clinicians can then better assess what the needs of each person might be and better prepare themselves to address those specific concerns.

In my humble opinion, this kind of app or portal should be a welcome addition to clinics all over the world and would help those who use it better address what concerns them.

The Grand Prize Winner

The Stress Reductor or Real Time Stress Feedback (Name pending 😉)

This clever application gives Apple Watch users options for both passive and active monitoring and feedback of their stress levels, while allowing them to customize what they would like to be notified about.

I particularly liked how personalizeable the user experience seemed and how seamless integrating an app like this could be for almost anyone. But, instead of hearing me blabber on about it, here is the presentation the group gave so you can hear about it in their own words…

The World of Humility

While we aren’t exactly sure what the next steps will be right now, we are hopeful that what we did yesterday will be just the beginning and that some of these ideas will bear fruit in the months to come.

Regardless, I wanted to extend my deepest gratitude to all who came out and made this event successful. It takes real humility to even attempt to help those living with any type of degenerative brain disease. These diseases do not come with instruction manuals, nor are there any guides we are given that can help us through all that we have to deal with. It is a boon to know that there are dedicated individuals out there willing to listen and work with us to try and make tomorrow a little better than today.

Lastly, just wanted to give special thanks to Rui Couto, Kevin Krejci and John Dean for founding Parkython and inspiring all of us to come together for this event.

(*For those wondering where that 50 million number comes from, I simply took the American number of one million diagnosed (which I believe to be roughly representative of global statistics), multiplied that by 20 (rough estimate for number of people on earth), and multiplied that by 2.5 (rough estimate of the number of people who care for each person diagnosed, real value = 1.5 people). I should note that this number does contrast with the 6-10 million number that we in the PD community usually hear but which I don’t believe is at all representative of the actual number of people affected by these conditions.)

4 comments

  1. Thank you for these brilliant ideas. I love the watch idea. I have so many ideas. It might be a good idea to have an input for after the stress event to identify the stress type, eg work or social anxiety or family issues, this can then empower the person to make changes in this area of their life. Also there is a lot of good research on how our thought patterns lead to stress. If we could find a way to encourage people to be aware of their thoughts during the stress event this watch would go from a passive self care mechanism to an active intervention that raises self awareness,which can then be used in CBT type therapeutic programs or help develop targeted affirmation phrases. I think it would be very beneficial to ask the broader community to find out what helps. If there is any room for other people to be involved, I would love to assist. I am a 46 year old single mom with PD.

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