Fighting Mr. Parkinson with Data: Round Two
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An update on my fight against Parkinson's Disease (PD), covering "Round Two" which I presented at a Quantified Self (QS) meetup in San Francisco on July 28th, 2014... The original presentation was prepared for a QS meetup held in January, 2014 to discuss my efforts to monitor and assess my progress fighting PD with tech, data, peer networks, nutrition, sleep, and positive visualization...
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Fighting Mr. Parkinson with Data: Round Two
- 1. Fighting Parkinson Disease with Data 2nd Round Winner: Kevin Kevin Krejci July 28, 2014 Quantified Self Show and Tell #34
- 2. In This Corner…In This Corner… image: (cc) emdot @kevinkrejciKevin Krejci
- 3. In Opposite CornerIn Opposite Corner image: (cc) emdot @kevinkrejciKevin Krejci
- 4. My Long Term Goals • Win the Fight (within 12 rounds) • Optimize productivity and quality of life • Keep symptoms at bay • Slow or reverse PD progression • Help find the cause and cure…
- 5. 2nd Round Goals* • Control of Symptoms • Maximize productivity • Reduce stress • Quantified Self (QS) Routines • Find efficient ways to measure/track my condition • Establish solid baselines • Try experiments and learn from them *(short term) stated at 1/2014 QS Show and Tell
- 6. 2nd Round Outcomes • Control of Symptoms • Doubled typing speed • Subjective ratings improved (feeling my best in a decade) • Sleep is still a challenge • QS Routines • Got organized • Collected lots of data from many tools • Still can’t connect the dots well (analytics challenge)
- 7. How? (1How? (1stst Round)Round) image: (cc) emdot @kevinkrejciKevin Krejci
- 8. How? (2How? (2ndnd Round)Round) image: (cc) emdot @kevinkrejciKevin Krejci
- 9. Keys to Success…Keys to Success… image: (cc) emdot @kevinkrejciKevin Krejci
- 10. Tracking Many SymptomsTracking Many Symptoms image: (cc) emdot @kevinkrejciKevin Krejci
- 11. With Many Tools*With Many Tools* image: (cc) emdot @kevinkrejciKevin Krejci *partial list
- 12. Is not easy…Is not easy… image: (cc) emdot @kevinkrejciKevin Krejci
- 13. Starting Simple and SubjectiveStarting Simple and Subjective image: (cc) emdot @kevinkrejciKevin Krejci
- 14. What Seems to be Helping • Exercise • Rock Steady Boxing, Crunch Gym, yoga, sports with my kids, etc. • Therapies • Physical therapy, acupuncture, meditation, massage, naps, LSVT (speech therapy) • Nutrition • Real food… • Medication • Carbidopa/Levadopa (Sinamet)
- 15. What Seems to be Hurting • Exercise • Not doing it… • Therapies • Not doing them… • Nutrition • Eating processed foods, excessive carbs, high fructose corn syrup, airplane food… • Medication • Ropinerole
- 16. 1/2014 Video on Flickr https://www.flickr.com/photos/kevinkrejci/sets/72157639824069093
- 17. 7/2014 Video on Flickr https://www.flickr.com/photos/kevinkrejci/sets/72157639824069093
- 18. Won the 2nd RoundWon the 2nd Round image: (cc) emdot @kevinkrejciKevin Krejci Rock Steady Boxing SF
- 19. Lessons LearnedLessons Learned (In 2(In 2ndnd Round)Round) • Leverage organizational skills of spouse • Get active and engaged • Experiment with therapies and routines
- 20. 3rd Round Goals • Keep trying new gadgets • Beddit, Sensoria (smart socks), etc. • Optimize routines • QS management, exercise, therapies, nutrition • Improve sleep results • Find natural alternatives to meds
- 21. Other Updates • Appointed as an Ambassador to the World Parkinson Congress 2016 • QS Parkinson’s Disease Meetup was founded by Sara Riggare • Planning a big QS experiment and fundraiser • Parkies (people w/ PD) sail for Hawaii
- 22. Behind every boxer… There are a lot of people to thank…
- 23. Wife and kids (Esther, Kai and Alani) Mom and Dad Brother and Sister Extended Family and Relatives Friends and Followers Colleagues and Management at Fujitsu, @Nifty, and RocketSpace
- 24. World Parkinson Coalition Rock Steady Boxing SF The Parkinsons Institute Physical Therapy Select SoulWorks PatientsLikeMe UCSF Neurology Department The Working Stiffs Support Group Ambulatory Parkinson’s Disease Monitoring (APDM)
- 25. Michael J. Fox Foundation Davis Phinney Foundation National Parkinson Foundation Parkinson Disease Foundation Parkinson’s Action Network The App and Platform Developers The Gadget Makers And last but not least…
- 26. YOU and the rest of the Quantified Self community! THANK YOU!!!
- 27. Get Engaged!
Editor's Notes
- 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 … Famous people with it include Michael J. Fox, Muhammad Ali, and Robin Williams (RIP)… 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.
- Organized wife to the rescue!
- Organized wife to the rescue!
- http://www.unitywalk.org/userfiles/file/WellBeingMap(1).pdf A great tool for tracking the myriad of PD related symptoms, including sleep disturbances, mood, non-motor symptoms, attention, memory, bladder and sexual function, digestion and the gut, movement, and pain. My bigger challenges are rigidity (muscle stiffness), bradykinesia, dyskinesia, posture. Not much tremor so far… Also a bit of neuropathy (numbness in the extremeties.
- 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… Fitbit, iHealth blood pressure monitor, Withings scale, BodyMedia (tracks pulse, perspiration, etc.), Basis (acquired by Intel, tracks pulse, perspiration, temperature and steps), Zeo (tracks sleep and various stages including light sleep, deep sleep, and REM stage of dreaming), Zephyr (tracks breathing, pulse, ECG, etc.) http://www.ihealthlabs.com/ http://www.withings.com/en/scales http://www.fitbit.com/ http://www.bodymedia.com/ http://www.zephyranywhere.com/zephyr-labs/
- http://irez.me/2012/08/15/data-crunch/
- https://www.patientslikeme.com/ InstantMe on PatientsLikeMe
- http://www.rocksteadyboxing.org/affiliates/rock-steady-boxing-san-francisco/
- Special thanks to:
- Special thanks to:
- Special thanks to:
- I am an ambassador to this wonderful program, and encourage anybody and everybody who wants to learn about and contribute to progress around Parkinson’s research to participate. This was a very inspirational and cathartic event for me to join in 2013, shortly after my diagnosis. The next one will be in Portland, Oregon from September 20th to 23rd in 2016. Contact me for more details: [email_address]