Parkinson's Tracking Update

My new metaphor is boxing for obvious reasons you’ll see later but in the corner is me and the other corner is Mr. Parkinson. It is a neurodegenerative disease that has a lot of symptoms and side effects, listed as words in this word cloud here.

My long-term goals are to win the fight, all 12 rounds hopefully if I don’t knock it out before. The main thing optimized productivity and quality of life, keep my symptoms at bay. Slower reverse, PD progression and help collectively find the cure, hopefully with the Quantified Self community.

My first round discussion was last January kind of the first year after my diagnosis. I talked a bit about some of my accomplishments and challenges and that’s on line later and share the link to that.

But basically my second round in the last six months these are my goals I stated back then you know, maximize productivity, type faster, work faster, run around the office faster. Reduce stress at the same time, and in my Quantified Self routines basically you know find more efficient ways to measure and track my conditions, establish some solid baselines and then try lots of experiments and then learn from them.

So far my second round outcomes, the good news in white, the bad news in red. I doubled my typing speed from slow to less slow, and my subject of ratings improved. I actually feel better than I have in probably five or 10 years just knowing that I have Parkinson’s and probably had it a long time and didn’t know it. Now I know how to manage it better but sleep is still challenging. I’ve been sleeping forty nine and a half years and still working out some kinks.

My routines, just getting organized has been a big challenge but I had some success in the last few months. Collecting lots of data from many tools but the challenge is still connecting the dots, finding those correlations were meaningful and all that good stuff.

So back in my first year, this is my mess that my wife got dealt with and tired of me asking where is the cable A for device B. so she got organized and voila I now have a charging station, so many thanks to my lovely wife, and pivot power by Quirky and these multipurpose cable clip dew hickies. These are wonderful and anybody who has a lot or more than one device you should have one of these.

So I’m tracking many many symptoms, too many to go into detail here but of the many tools this is a partial list. So it’s not easy to look at the tsunami of data. So I’m basically starting simple. I’m looking at I use part of patients like me and have a great system of doing daily surveys. These are almost daily.

So I report my general feeling on a scale of one to five; one being red, light blue being really really very good. So I kind of gradually gone from overtime gone from a lot of red and orange to a lot more blue which is good. And just kind of looking back you know at the peak moments of what kind of my notes are basically and I keep finding exercise, massage, and sleep is kind of common elements. So basically what seems to be helping is exercise. I’ve joined Rock Steady Boxing a really cool place down here in Poke Street San Francisco; I’m learning how to box without contact to the head.

Crunch Gym joined recently and I’m doing a little bit of yoga and a lot of playing sport with my kids. Doing lots of therapies; these are just a few. Physical therapy once a week, acupuncture I did a couple of times. Meditation I’m starting to dabble with. Massage I’ve loved always and will always love massages. Naps I’ve found even a siesta now and then really does wonders. And then LSVT which is an acronym for Lee Silverman and Voice Training. I did a four week crash course at the Parkinson’s Institute in Sunny Vale, and basically that’s where I learned to go from mumbling which is a common Parkinson’s side effect to speaking loud. So hopefully I’m a little more like Tony Robbins this time!

And then finally nutrition. I’m using a lot of supplements trying to track those that’s a nightmare but I find basically that real food is key and avoiding process foods and eating natural raw organic stuff.

Medication, I just recently tried carbidopa and Levadopa and that’s working great for me. I’m trying to ween off of it though eventually and try homeopathic remedies.

So in my biased view I won the second round four to two, and here’s just a little video back in January of me walking which is typical Parkinson’s; my left arms not swinging. My postures not that good and my kid does much better than me and I’m kind of slow. And then just a couple of weeks ago at the boxing gym.

My wonderful trainer coach Kim really getting me to focus on balance. Aerobic exercise gets rid of a lot of stress. All sorts of things that are really challenging for Parkinson’s and something that happens in the brain and just shift into fight or flight mode, so look out don’t mess with me!

Anyway, lessons learned from this last six months basically leverage organizational skills of spouse or loved ones if you have one; they’re priceless. Get active, don’t sit around it definitely makes a big difference. I just keep experimenting with therapies and routines.

Third round goals over the next six months or so I’m going to keep trying new gadgets, got a lot more I saw several out here tonight I want to talk to all of you after the meetup here. Optimizing routines, Quantifying Self management, exercise therapies with nutrition. Improve sleep results and find some natural alternatives to meds. I’m growing fava beans now that’s one of my experiments.

Other updates; I was appointed as a ambassador to the Parkinson’s World Congress in 2016 so I’d love to talk to some of you later who are hoping to do some big Quantified Self experiments. And that’s a big and great event in Portland in September 2016 and we’ll have lots of researchers and patients and the whole Parkinson’s movers and shakers community will be there.

And actually we just started a QS meetup just specifically for PD, so if you’re interested in that topic let me know. And I’m also doing a crazy thing with a couple of working stiff buddies. Basically one of the guys is a sailor and he’s done the Trans pack five times, and we’re trying to get a group of Parkies together of people who have Parkinson’s and basically sail to Hawaii and do some Quantified Self experiments and fundraising at the same time.

That’s it and behind every boxer there are a lot of people to thank. They’re all here and without them I couldn’t have made any of this progress so it’s not just technology it’s people, so thank you very much.