Today was supposed to be a great day for me. I had just arrived in Montreal, a city I love, a place where I have vivid memories of friends old and new pop on almost every corner. I woke up this morning feeling amazing and had a delicious scone and a cappuccino with a friend, as we reminisced about all that I had been able to do in the past year.
You see, one year ago, today, I had an adaptive deep brain stimulator surgically implanted in my basal ganglia. I still remember every face that was in the operating room that day, I remember what it sounded like as the bore holes were bored through my skull, and I even remember the smell as the team drilled through every cortical layer of my brain to get down to the target area.
I was also the first Caucasian to then have the adaptive settings turned on in November as part of the ADAPT-PD trial (there is another in Japan that began a year earlier). Getting to that point was the most trying experience of my life. It took almost 3 months just for the scars on my head to heal after I had been partially scalped for the surgery. While they were still healing the programming began.
I still have not found the right words to describe what it feels like to be programmed. For 5 months I had to go back to my doctor’s office almost every 2 weeks and sit, as still as I could, as he pressed buttons on a tablet that controlled my brain. If he turned up certain contact points too quickly I’d immediately leap out of my chair, my arms would flail about, and I’d have an urge to go for a run. Other contact points would send me into a manic tailspin of self destruction in which I’d become a lascivious whore, drinking eating and doing all manner of illicit activity.
It’s a funny thing to understand just how programmable the human mind is, turn up the dial too high in one tiny part of the brain and you can go in an instant from looking like a 100 year old man, tremoring like crazy and stiff as a board, to feeling like the most suave sophisticated debauched individual on earth.
But eventually we found just the right settings for me, since we did I began working on the project I am most proud of of everything I have done so far. This January I joined Rune Labs to chair their Patient Advisory Board (PAB). Rune Labs is building a suite of tools to enable precision medicine in neurology to finally become a reality. The PAB is their gateway to the real world experience of those living with Parkinson’s. Four people tasked with providing critical feedback to the team to ensure the patient voice is properly represented in the tools we are building. A historic, never before seen collaboration between entrepreneurs, tech enthusiasts, engineers and software developers, and I am now incredibly proud to add, people with Parkinson’s diseases.
(Sorry, short one bio from Gina Lupino, for those curious, click here)
What does any of this have to do with Twitter? You might be asking..
Well, for the past 6 years I had been building a following on Twitter that now stretches to include over 3000 scientists, researchers, clinicians, people with Parkinson’s, as well as people who represent every single part of a care team network. It has been an integral part of my advocacy and it has played a part in getting my foot in the door in so many of the world’s leading biotech companies and academic medical lab.
All that seems to have come to an end today after I received this message from Twitter just two hours ago in response to a back and forth between myself and Dr. Simon Stott (@scienceofpd) who is one of my oldest and dearest friends in this field, because of a few barbs that Twitter took out of context (because how could any bot or person tasked with manning that bot understand the context behind these exchanges or the meaning of friendship?)
I want to be clear to the folks at Twitter. This is not a plea to be reinstated. And in fact, if I am reinstated, without any significant changes to your management team, I will simply delete my account immediately. This is a plea to listen to the world and do what you are now responsible for. This platform is probably the most influential curator of news and information the world has. That is a responsibility that you now have to us to try and do better tomorrow than you are today.
This is my small attempt to hold you to that standard.