!["A small routine operation" the surgeon described it. (In the realm of brain surgery, he clarified.) self CC BY](/sites/default/files/styles/large/public/2024-06/IMG_20240615_081616664.jpg?itok=eN2_quC9)
"A small routine operation" the surgeon described it. (In the realm of brain surgery, he clarified.) self CC BY
...or, on second thought, maybe I would
(Previous blog post on coping with Parkinson)
"This is a bit ironic", I told my "Stimulator specialist nurse" as he was instructing me how to use this new device, that just made me 5 years younger and maybe extended my life with 20+ years.
"I'm a world famous Linux and open source enthusiast, and now you're giving me an iPhone-only app that I must use or I'll die..."
The phone has exactly one app installed, so only one icon in the menu. I somehow feel Steve Jobs would be proud of the minimalism!
Last time I blogged about my Parkinson's, I had Googled several alternative or untested treatments that I was curious to try. I didn't order ISRIB from Ukraine, but a year later read on Reddit it had severe cardiac arrest -type symptoms as a by product. I tried a full body suit that would electrically treat my muscles - it kind of worked, but also had issues and I stopped using it. I declined to participate in a poop-transplant study by Helsinki university. Who could have guessed that study found a protein that causes Parkinson. But, as I would later learn from the DNA test they took in preparation for this surgery, I don't have that gene mutation that produces that protein. So any cure that might come out of that study wouldn't apply to me anyway.
I eventually resorted to the tried and true method of going to a private clinic, booking time with Finland's leading Parkinson expert. The approach was simple: Every year my Parkinson would progress, and he would prescribe more drugs. As one hit its limits, we took the next one. Last year I was taking four different pills: Levodopa, Pramipexol, Opikaponi and Rasagilin. In addition we tried Amantadin, but it didn't suit me. As I had more than maxed out all of those four, I went back to get pill number six to mix into my cocktail.
Turns out there was no pill number six. The next treatment would either be a pump - similar to what diabetics use to administer insulin - that would inject a small dose of Dacepton every 5 minutes... The Latin name for this substance was Apomorphine, and it came with a pretty cool card signed by the doctor, to be used mostly when entering Customs inspections: "The holder of this card is prescribed this medicine to treat Parkinson's disease. Apomorphine has no relation to morphine, nor any other controlled substance. And if you take this medicine away from them, the patient will die within 24 hours (unless taken to a hospital immediately)."
Nevertheless, Dacepton made me drowsy during the day, sleepless at nights, and eventually completely cuckkoo. I pulled the plug and returned to my old medication first week of January.
That left us with Deep Brain Stimulation. A tried and safe treatment where two wires are inserted into the patient's head, and then charged to kick the Substantia Nigra in the butt a little to produce more dopamine. First patients in Finland have had this surgery 20 years ago and are still using it and results are generally good.
I've been feeling great too, so I've summarized the operation as making me 5 years younger again, and giving me at least an extra 20 years to live. It's been a great week. And as a bonus, I know what I'm wearing for next Halloween...
In other news...
Nyrkiö
For all of my adult life I had a small dream of starting my own company. So many ideas, side projects... The feeling "surely I could do better than those guys".
Then when I got Parkinson, with the threat of at least early retirement from work, or in the worst case... everything... I had given up on that dream. It felt like the safe bet would be to just stay in my comfortable well paid full time jobs until retirement.
But when Matt Fleming asked me to join him as co-founder, I knew it was the now or never moment I had been waiting for.
We decided that our first product would be to mainstream and commercialize the Hunter open source project. Automated Change Detection in benchmark results. At this point it's a 9 year old open source project and has been battle tested at MongoDB, Datastax, Confluent... It's ripe for a wider audience we think. More generally, we would like to bring our experience in performance testing and benchmarking to a wider audience. Our hope is that Nyrkiö will one day be known for performance tools that are as common and no-brainer as CircleCI, Jenkins, JUnit, pytest and so on. We would like to move the art of performance testing from a specialized domain with custom tooling to a solved problem that every software engineer can just "turn on" in their project without even thinking about it.
The company name was chosen by Matt, and is a variation of Nyyrikki, the guardian spirit of hunters and hunting in Finnish mythology. As I was always more of a Sea and Viking descendant myself, basing the company culture on Kalevala and the Finnish Forest has been vitalizing! Nyyrikki is such a modern character, being non-binary and everything! (Well, perhaps more correctly because they aren't human in the first place, trying to define a gender is kind of asking the wrong question...)
So for example, it turns out you can buy thin sheets of real wood - in this case birch - that feel just like paper. And you can carve or laser print on them, making for some very unique, and warm, business cards! (Business cards by the brilliant craftsman/artist Henri Timperi.)
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