Tracking my Parkinson's
chronic condition | diet and weight loss | sleep
Kevin Krejci was diagnosed with Parkinson's Disease last year. He share his story of how he's using self-tracking applications and devices to help him monitor different symptoms and outcomes related to his diagnosis. Watch his talk to hear about his triumphs and challenges.
Excel | Fitbit
Okay, I’m Kevin Krejci, business and alliance manager for Fujitsu Labs and a dad of two boys and also a dude with PD, and what’s PD you ask. PD is a neurodegenerative disease that makes it hard to pronounce words like neurodegenerative and it’s basically a motor disorder. So guy like me might end up looking like that a little before we should.
But that’s okay, I’m a big Quantified Self fan and I have been for a long time. I organized this event even at Fujitsu Labs a couple of years ago in personalized healthcare. Back then I didn’t have personalized health on my mind and I was kind of outside looking in, but I was recently diagnosed with Parkinson’s earlier last year, so suddenly it means a lot more to me.
And a patient Dave was here a few years ago who really inspired me and got me to start tracking my sleep and a few other things then way back then even though I didn’t know why I was doing it. Very inspiration to hear his story if you haven’t already.
I am part of the us contributing data to services like 23and me and patientslikeme, here together and trying to connect with people on all the social networks and share good stories and data.
I got this Parkinson’s well-being mat which helps track all the symptoms that commonly associated with Parkinson’s including shaking which I do even when I’m not talking to people on Ignite presentations.
But some of the key things that I’m trying to track right now is sleep disturbance because it seems to cause a lot of sort of a cycle. I don’t sleep well, I shake and get ridged the next day, and if I get ridged I then shake and I don’t sleep well.
So I’m trying to break this cycle so I view this as a QS opportunity.
A quote from Michael J Fox, he got diagnosed 23 years ago and he says, ‘Our challenges don’t define us, our actions do’. And he’s still kicking, so there’s hope for all of us.
And now, what are my challenges that don’t define me? one of the key ones is Brady apnea, but it’s marked by muscle rigidity, especially like this left arm of mine. It just doesn’t want to swing. I have the butler arm, slowness like I can’t finish my slides in time and so on.
My reactions. I worked Rajeev to create my CSV here, you know tracking things like activities I want to monitor and try to prioritize them. You know if there’s a quantity involved, you know how many per day for example or do I need to do frequency schedule. You know when’s the best time to do it, like with weight jump on the scales at 6:30 AM as much as possible.
I’m also trying to you know prioritizes that I must do or experimental you know long list. You know I’m checking biometrics, you know what tools I’m using for that, chores that I have to do, diet issues, exercise, medications, symptoms, and side effects, and I’m tracking kind of helps me prioritize and think about those and therapies, lots of therapies to try. And I’m trying the all.
So my goals short term is maximize my productivity and I make my boss happy and my wife happy and the kids happy. Reduce stress which is kind of related to that.
Long term I just want to hold my future grandkids without dropping them, that’s key.
So QS goals. So find efficient ways to measure, track my condition, establish some solid baselines, try some experiments and learn from them, and take a deep breath once in a while.
Okay, so these are my friends that are helping me to collect the data. I have Fitbit, iHealth checking my blood pressure, and Body Media on this shoulder. With my Withing’s scale, I’ve got this little zephyr what you call it, it tracks quite a few things.
Sleep, I’ve been doing it for 49 years, but still not very good at it. but I did start tracking with sleep cycle about three, four years ago and making some improvement as you can see.
Fitness, it does help if I get fit and I sleep better, and I found that to be true. It’s good for all of us. Fitbit’s helping me, keep me motivated. I use the Map My Fitness to do family hikes and then runs around the track and measure with Run Keeper.
And losing weight is good for all of us to and including PD patients like me. So my Withing’s scale inspires me every day to jump on there and see how I’m doing with that. So I found that over six months I lost about 10 pounds or so or less.
And I started the year off with a bang. I did a four day fast without meds, and then also two days and those four days without food, so just water, and I just tried to do testing collecting data every day and I lost about eight, nine pounds, and lots more on that to report at the next QS talk, but part of that I did some videos. Had my wife just video tape me, you know walking around mazes lik this to track my movement and so on.
And folks at APDM, movement monitoring solutions were kind enough to loan me one of their cool kits over here you can look at later.
Put some sensors around different parts of the body to measure movement monitoring like sway, you know gait, how well my arms are swinging and so on. And they have a little panel here that you can look at different tests that you can run, based on where you put the sensors and what kind of exercises you do.
Generate some graphs which we all love to look at that sometimes hard to decipher. And typing, that one of the key product challenges for me; I’ve noticed over the years I’ve been getting worse and worse, and slower and slower. So I’m doing periodic tests now and working with a physical therapist to reverse that trend, so making some progress there. And thanks to Rajeev and trying his app out on Frazzle. It’s really good at giving reminders to take your meds and supplements and things like that, and then to report how you’re feeling at the moment. You know, I’m tracking things like Brady Apnea and just mine more subjective feelings about things.
Nutrition, good for all of us. For now I’m just taking pictures of what I eat and then figured latter that if I look at the data I might find some peak moments and I can go back and say what did I eat before I left. So for now I’m just collecting, collecting.
So lessons learned so far, tracking is no easy task. It requires a lot of discipline and commitment as we all know, but its fun and data is to scattered to cross-correlate, but that’s where the real funs going to be.
So apps and social networks do help and I’m just going to start out- and you may have heard of their Fujitsu Sprout platform 2- I’m talking to our guys in the labs to try that out personally. It’s a real-time data aggregation in the analysis platform. So I’ll be able to look at some of my data in real-time like stress and see how that’s impacting me.
And the challenge is to quantify me, that’s routines. Routines, routines, just trying to remember to charge the devices and don’t lose my cable, and just make time for everything including family and work. The challenge is to quantify me and us, and it’s again turning that data and big data into good data to find in the good data and the us data, and turning it into actionable wisdom, so I can be there for them and be there for you. And come back in a year and tell you about my progress.
So thank you very much.