Fighting Parkinson Disease
with Data
Kevin Krejci
January 16, 2014
Quantified Self Show and Tell #32
I’m A Dude with PD

Kevin Krejci

image: (cc) emdot

@kevinkrejci
What is PD?

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Big QS Fan

Organized event in 2011: "Healthcare Technology Convergence –
Smart Consumers Meet Care Delivery of the Future...
Inspired to Overcome

Kevin Krejci

image: (cc) emdot

@kevinkrejci
An “N” of Many

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Wheel of (mis)Fortune?

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Or QS Opportunity?

Kevin Krejci

image: (cc) emdot

@kevinkrejci
A Quote

- Michael J. Fox

Kevin Krejci

image: (cc) emdot

@kevinkrejci
My Challenges*
• Bradykinesia
• Muscle Rigidity
• Slowness
• Coordination
• Sleep
* That don’t define me
My Actions*

* That define me
Kevin Krejci

image: (cc) emdot

@kevinkrejci
Examples

Kevin Krejci

image: (cc) emdot

@kevinkrejci
The List Goes On

Kevin Krejci

image: (cc) emdot

@kevinkrejci
My Goals

• Short Term
• Maximize Productivity
• Typing, running around office, etc.
• Reduce stress
• Long Term
• Slow or...
My QS Goals
• Find efficient ways to measure/track my
condition

• Establish solid baselines
• Try experiments and learn f...
Collect the Data!

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Sleep

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Fitness

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Lose Weight

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Fasting Helps!

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Movement Videos

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Movement Monitoring

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Movement Monitoring

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Typing Testing

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Symptoms and Meds

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Nutrition

Kevin Krejci

image: (cc) emdot

@kevinkrejci
Lessons Learned
(So Far)

• Tracking is no easy task
• Requires discipline and commitment
• Data is too scattered and hard...
Fujitsu Sprout Platform

Copyright 2012 Fujitsu Laboratories of America, Inc.

Kevin Krejci

image: (cc) emdot

@kevinkrej...
Challenges to
Quantify Me
• Routines
• Charging devices
• Losing Cables
• Making time for everything
Challenges to
Quantify Me
• Big Data  Good Data
• Turning into actionable wisdom
So I Can Be There for Them

Kevin Krejci

image: (cc) emdot

@kevinkrejci
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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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  • I'll be doing an update talk on this at the Quantified Self Meetup in San Francisco on Monday evening, July 28th. Details: http://www.meetup.com/quantifiedself/events/187124622/
       Reply 
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  • Hi Kevin, Saw your presentation at the QS meetup last week and wanted to reach out regarding a motion tracking project I'm working on which allows you to see raw motion data rather than quantized steps, points, etc. Would you be willing to share your email address so I can send you some more info? my is zach.jones.06@gmail.com
       Reply 
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  • 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/
  • Fighting Parkinson Disease with Data

    1. 1. Fighting Parkinson Disease with Data Kevin Krejci January 16, 2014 Quantified Self Show and Tell #32
    2. 2. I’m A Dude with PD Kevin Krejci image: (cc) emdot @kevinkrejci
    3. 3. What is PD? Kevin Krejci image: (cc) emdot @kevinkrejci
    4. 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. 5. Inspired to Overcome Kevin Krejci image: (cc) emdot @kevinkrejci
    6. 6. An “N” of Many Kevin Krejci image: (cc) emdot @kevinkrejci
    7. 7. Wheel of (mis)Fortune? Kevin Krejci image: (cc) emdot @kevinkrejci
    8. 8. Or QS Opportunity? Kevin Krejci image: (cc) emdot @kevinkrejci
    9. 9. A Quote - Michael J. Fox Kevin Krejci image: (cc) emdot @kevinkrejci
    10. 10. My Challenges* • Bradykinesia • Muscle Rigidity • Slowness • Coordination • Sleep * That don’t define me
    11. 11. My Actions* * That define me Kevin Krejci image: (cc) emdot @kevinkrejci
    12. 12. Examples Kevin Krejci image: (cc) emdot @kevinkrejci
    13. 13. The List Goes On Kevin Krejci image: (cc) emdot @kevinkrejci
    14. 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. 15. My QS Goals • Find efficient ways to measure/track my condition • Establish solid baselines • Try experiments and learn from them
    16. 16. Collect the Data! Kevin Krejci image: (cc) emdot @kevinkrejci
    17. 17. Sleep Kevin Krejci image: (cc) emdot @kevinkrejci
    18. 18. Fitness Kevin Krejci image: (cc) emdot @kevinkrejci
    19. 19. Lose Weight Kevin Krejci image: (cc) emdot @kevinkrejci
    20. 20. Fasting Helps! Kevin Krejci image: (cc) emdot @kevinkrejci
    21. 21. Movement Videos Kevin Krejci image: (cc) emdot @kevinkrejci
    22. 22. Movement Monitoring Kevin Krejci image: (cc) emdot @kevinkrejci
    23. 23. Movement Monitoring Kevin Krejci image: (cc) emdot @kevinkrejci
    24. 24. Typing Testing Kevin Krejci image: (cc) emdot @kevinkrejci
    25. 25. Symptoms and Meds Kevin Krejci image: (cc) emdot @kevinkrejci
    26. 26. Nutrition Kevin Krejci image: (cc) emdot @kevinkrejci
    27. 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. 28. Fujitsu Sprout Platform Copyright 2012 Fujitsu Laboratories of America, Inc. Kevin Krejci image: (cc) emdot @kevinkrejci
    29. 29. Challenges to Quantify Me • Routines • Charging devices • Losing Cables • Making time for everything
    30. 30. Challenges to Quantify Me • Big Data  Good Data • Turning into actionable wisdom
    31. 31. So I Can Be There for Them Kevin Krejci image: (cc) emdot @kevinkrejci

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