Vaping in Portland
A scribbled address on a post-it note had led me to a leafy early 20th-century street in Portland suburbia. It was dark I looked down at the scrunched up piece of paper in my hand. This was definitely the place. I didn't know what to expect.
Let's backtrack a little. The previous day, I had run into Sara Riggare at the conference centre during a coffee break between sessions. She was, as always, on her way to another session. She was excited about something but did not have time to explain.
"There's somebody I want you to meet" she said, as she approached. "Are you free tomorrow evening?" I barely had time to say yes before she vanished into the distance at the speed of light. It was the same the following day when she thrust into my pocket a single post-it note with an address and a time (7.30 p.m.). "Don't be late" she said.
Let's backtrack some more to the summer of 2016 and a story of happy coincidences. Start with a young chemistry graduate in sunny California, fresh out of college with time on her hands and a penchant for home experimentation. Take another chemical engineer working as a postgraduate student on the other side of the world, at the Karolinska Institute in icy Sweden, also with a fondness for self experimentation. Both were 14 when originally diagnosed with a movement disorder. In both cases it turned out to be Parkinson's. Both were determined to make their mark. And both were heading to Portland for the 4th World Parkinson Congress. I'm talking of course about Jasmine Sturr and Sara Riggare.
Jasmine is, I think she would admit herself, something of a medical miracle. Diagnosed initially with dopa responsive dystonia, the progression of the condition and development of dyskinesias leading to a rediagnosis of juvenile onset Parkinson's. A lot to deal with, especially in your teens. But Jasmine also suffers from gastroparesis and receives largely parenteral nutrition via a central line as well as medication through a jejunal tube. For most of us that would be an insupportable burden. It's difficult enough managing Parkinson's without adding all sorts of pharmacokinetic problems induced by gastroparesis. For Jasmine, it's merely a problem. A problem in the sense of something to be addressed and solved.
In May 2016, Jasmine announced her presence as a Parkinson's advocate and activist when she began uploading a series of video clips to a Facebook support group about her life with juvenile onset Parkinson's. One particularly stimulated wider interest – a short film in which she demonstrated how she made her own generic "Duodopa". Not surprisingly, the Duodopa manufacturers were also interested! Sara invited both to come to Portland for a meeting she was organising as a satellite to the WPC. Sara invited Jasmine to speak at the meeting. Those that were present were bowled over by this young chemist and her down-to-earth solutions to problems, whether home made duodopa or vaping nicotine.
Collaboration was always in the cards. And when you take Sara's skill set of a chemical engineer, WPC ambassador and patient advocate and throw it into the mix, good things are more or less inevitable. No wonder Sara told me there was "somebody I want you to meet".
So there I was, outside an address on 15th Avenue. A large Gothic house of local stone with an Arts and Crafts charm. A broad staircase led up to the huge porch. Chairs and rockers for sitting and talking. A heavy door to the right, further stairs. A babble of conversation half heard from behind the apartment door ajar. I knocked and gently pushed the door open. A large open living room led to a dining room and kitchen, full of people, food & drink.
"Ah Mr Bond. We've been expecting you" said a voice.
It was Sara Riggare and, no she didn't say that! What she actually said was more "Ah Jon, can I get you a beer?" Introductions were mostly unnecessary – I knew Jill Carson, Shel Bell, Heather Kennedy, Vicky Dillon, Rajiv Mehta and the various spouses and children present. But I didn't know the girl in the wheelchair with her dad.
Sara spoke up. "Jon" she said "let me introduce Jasmine Sturr".
It was one of those dinner parties where people came and went, came back, brought friends. Everyone stopped to talk. We chatted endlessly about ideas. And good ideas. I can't even begin to list the subjects we discussed but in particular we talked about "n of 1" studies and the importance of individual patient experience, especially with a condition like Parkinson's where so much of the burden of illness is unseen.
Idle chatter you might think. We've all been there – brilliant ideas at the time of discussion, mostly forgotten by the morning after. The burning torch of inspiration doused by grey reality. But on this occasion, far from the truth. I remember one subject in detail. Dyskinesias. A paper in the literature had highlighted possible benefit of nicotine in treating dyskinesias in monkeys. 1 Both Jasmine and Sara experienced dyskinesias so they were interested in testing the idea.
Conventionally, that would have been the beginnings of a process of experimental design, resourcing and data analysis taking months at least. That after all is the standard model. But Jasmine and Sara decided to do things differently – in the great tradition of past self experimenters, they decided to use themselves as subjects. Proper science but conducted on themselves. The only problem was that neither smoked nor wanted to. So they needed a different way.
Portland, at that time, was perhaps a major centre of 'vape' culture, partly as a substitute for nicotine cigarettes but also for marijuana, perhaps a statement of counterculture. Vape shops abounded. Sara bought a vaporiser, some nicotine liquid and a similar smelling fluid as a control. They were all set. They recruited independent blind assessors (including me) and set to work. By the end of the conference, the trial was designed, executed, recorded and some way towards being completely analysed. Not bad for an idea dreamt up over dinner. Like the best scientists, they wrote up and published their findings. And you can read them here. 2
And if that is where the story ended, it would be interesting enough. But it's really only the beginning of Jasmine's story. And of her collaboration with Sara. And I can hardly wait to tell the next part of the story.
WPC is all about connections. Connections between patients, scientists and clinicians. Connections that show new ways of seeing or doing things. Sometimes it's just a case of providing the right environment for ideas to flourish. Sometimes it's a case of the right people meeting each other. And that can occur as often outside the scientific sessions as within. In the coffee queue or at a poster session. Or even on 15th Street as a dinner party. Connections are everywhere.
___________________________________________________________
1.) Quik M, Mallela A, Ly J, Zhang D. Nicotine reduces established levodopa-induced dyskinesias in a monkey model of Parkinson's disease. Mov Disord. 2013 Sep;28(10):1398-406.
You can read the abstract by clinking this link: https://www.ncbi.nlm.nih.gov/pubmed/23836409
2.) Riggare S, Unruh KT, Sturr J, Domingos J, Stamford JA, Svenningsson P, Hägglund M. Patient-driven N-of-1 in Parkinson's Disease. Lessons Learned from a Placebo-controlled Study of the Effect of Nicotine on Dyskinesia.Methods Inf Med. 2017 Oct 24;56(99):e123-e128.
You can read the abstract by clinking this link: https://www.ncbi.nlm.nih.gov/pubmed/29064509