Fighting Parkinson Disease with Data
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A story about how I am collecting, sharing and analyzing data to fight Parkinson's Disease (PD) and optimize my life. It was prepared for the Quantified Self "Show and Tell" on Jan. 16th, 2014 at Autodesk Gallery in San Francisco. Bottom line: I may have Parkinson's, but it doesn't have me! Note: Most photos link to related source materials. Feel free to download, reuse, and comment. (CC Attribution License) I welcome suggestions for the presentation and QS routines! Hopefully the first of many as I track my progress against the progress of PD... The video of my presentation can be found here: http://quantifiedself.com/2014/02/kevin-krejci-tracking-parkinsons/
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Fighting Parkinson Disease with Data
- 1. Fighting Parkinson Disease with Data Kevin Krejci January 16, 2014 Quantified Self Show and Tell #32
- 2. I’m A Dude with PD Kevin Krejci image: (cc) emdot @kevinkrejci
- 3. What is PD? Kevin Krejci image: (cc) emdot @kevinkrejci
- 4. Big QS Fan Organized event in 2011: "Healthcare Technology Convergence – Smart Consumers Meet Care Delivery of the Future“ Kevin Krejci image: (cc) emdot @kevinkrejci
- 5. Inspired to Overcome Kevin Krejci image: (cc) emdot @kevinkrejci
- 6. An “N” of Many Kevin Krejci image: (cc) emdot @kevinkrejci
- 7. Wheel of (mis)Fortune? Kevin Krejci image: (cc) emdot @kevinkrejci
- 8. Or QS Opportunity? Kevin Krejci image: (cc) emdot @kevinkrejci
- 9. A Quote - Michael J. Fox Kevin Krejci image: (cc) emdot @kevinkrejci
- 10. My Challenges* • Bradykinesia • Muscle Rigidity • Slowness • Coordination • Sleep * That don’t define me
- 11. My Actions* * That define me Kevin Krejci image: (cc) emdot @kevinkrejci
- 12. Examples Kevin Krejci image: (cc) emdot @kevinkrejci
- 13. The List Goes On Kevin Krejci image: (cc) emdot @kevinkrejci
- 14. My Goals • Short Term • Maximize Productivity • Typing, running around office, etc. • Reduce stress • Long Term • Slow or reverse PD progression • Keep playing beach soccer with kids • Hold my future grandkids
- 15. My QS Goals • Find efficient ways to measure/track my condition • Establish solid baselines • Try experiments and learn from them
- 16. Collect the Data! Kevin Krejci image: (cc) emdot @kevinkrejci
- 17. Sleep Kevin Krejci image: (cc) emdot @kevinkrejci
- 18. Fitness Kevin Krejci image: (cc) emdot @kevinkrejci
- 19. Lose Weight Kevin Krejci image: (cc) emdot @kevinkrejci
- 20. Fasting Helps! Kevin Krejci image: (cc) emdot @kevinkrejci
- 21. Movement Videos Kevin Krejci image: (cc) emdot @kevinkrejci
- 22. Movement Monitoring Kevin Krejci image: (cc) emdot @kevinkrejci
- 23. Movement Monitoring Kevin Krejci image: (cc) emdot @kevinkrejci
- 24. Typing Testing Kevin Krejci image: (cc) emdot @kevinkrejci
- 25. Symptoms and Meds Kevin Krejci image: (cc) emdot @kevinkrejci
- 26. Nutrition Kevin Krejci image: (cc) emdot @kevinkrejci
- 27. Lessons Learned (So Far) • Tracking is no easy task • Requires discipline and commitment • Data is too scattered and hard to crosscorrelate • Apps and social networks help to motivate
- 28. Fujitsu Sprout Platform Copyright 2012 Fujitsu Laboratories of America, Inc. Kevin Krejci image: (cc) emdot @kevinkrejci
- 29. Challenges to Quantify Me • Routines • Charging devices • Losing Cables • Making time for everything
- 30. Challenges to Quantify Me • Big Data Good Data • Turning into actionable wisdom
- 31. So I Can Be There for Them Kevin Krejci image: (cc) emdot @kevinkrejci
Notas do Editor
- According to Twitter, I’m an IMpatient PD patient, fighting Parkinson's with tech, data, exercise, organic unprocessed food, and positive visualization. Opinions are frequently my own, as they are tonight... https://twitter.com/kevinkrejci
- What is PD? It’s the acronym we affectionately use to refer to Parkinson’s Disease, a degenerative disorder of the central nervous system that causes people like me to turn into movers and shakers like this guy … Source: Wikipedia http://en.wikipedia.org/wiki/Parkinson's_disease Front and side views of a man portrayed to be suffering from Parkinson's disease. These are woodcut reproductions (of two collotypes from Paul de Saint-Leger's 1879 doctoral thesis, Paralysie agitante..etc.) published in Gowers, William Richard (1886). "Fig 145 — Paralysis agitans. (After St. Leger.)". A Manual of Diseases of the Nervous System II. London, United Kingdom: J. & A. Churchill. pp. p. 591. Retrieved 2011-03-24.
- I organized this event for Fujitsu Labs of America in Mt. View on June 1st, 2011 "Healthcare Technology Convergence - Smart Consumers Meet Care Delivery of the Future“ http://www.flickr.com/photos/fujitsu_labs/5861923610/in/set-72157627025368066 This symposium served as a forum for the exchange of ideas and information among healthcare practitioners, technology providers, investors and consumer advocates, and included remarks by a distinguished slate of guest speakers and panelists, including: Peter Levin, CTO Veterans Affairs Amir Dan Rubin, President of Stanford Hospital and Clinics Gary Wolf, Quantified Self Dr. Michael Matly, Mayo Clinic John de Souza, MedHelp Aza Raskin, Massive Health Matthew Holt, Health 2.0 Etc.
- http://www.epatientdave.com/2013/10/04/resources-for-todays-lecture-at-the-world-parkinsons-congress/
- https://www.patientslikeme.com/
- http://www.unitywalk.org/userfiles/file/WellBeingMap(1).pdf
- http://www.unitywalk.org/userfiles/file/WellBeingMap(1).pdf
- http://www.michaeljfox.org/thinkableLanding/thinkable.html
- Between Siri, Google, and my extended social networks, I was able to find a plethora of sensor-powered tools to start quantifying my progress vs. the progress of PD… http://www.ihealthlabs.com/ http://www.withings.com/en/scales http://www.fitbit.com/ http://www.bodymedia.com/ http://www.zephyranywhere.com/zephyr-labs/
- SleepCycle data
- Fitbit, MapMyFitness, and RunKeeper
- Withings scale data. Lost close to 15 lbs in 6 months. 8 lbs in 47 hours of fasting in January.
- http://apdm.com/
- http://apdm.com/
- http://apdm.com/
- http://www.typingtrainer.com/typing-tutor/
- http://unfrazzledcare.com/
- http://www.flickr.com/photos/kevinkrejci/11211779095/
- http://quantifiedself.com/2013/12/ajay-chandler-measuring-moment/ http://www.ft.com/cms/s/2/3ccb11a0-923b-11e0-9e00-00144feab49a.html#axzz2qy1pCg6H
- http://www.flickr.com/photos/kevinkrejci/