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Hey folks,
Some positive (and partly personal) news!
I’ve recently been welcomed as the newest member of an amazing group of neuro disorder advocates. I’m really excited about it for reasons having to do with FND (and other things too), so:
a thread!
Some positive (and partly personal) news!
I’ve recently been welcomed as the newest member of an amazing group of neuro disorder advocates. I’m really excited about it for reasons having to do with FND (and other things too), so:
a thread!
The group is called... deep breath..
the Toronto Western Hospital Movement Disorder Clinic Patient Advisory Board
(say that 5 times fast).
We call it the PAB for short.
the Toronto Western Hospital Movement Disorder Clinic Patient Advisory Board
(say that 5 times fast).
We call it the PAB for short.
The PAB’s stated mission is to “advise on innovation” in research and treatment at Toronto Western’s movement disorder clinic.
Here’s why I’m so psyched about it.
Here’s why I’m so psyched about it.
the TL;DR: As part of this team, I have a chance to help improve healthcare for a significant percentage of FND patients in Canada ... and people with other motor disorders too. 
The PAB is also a great chance for folks w FND and other disorders to learn from each other - and benefit by doing so. 
And now the juicy details: 
First, Toronto Western is one of the major hospitals in Canada! Its neurology center, to quote the website, “is world renowned as one of the top centres in this field”. They do ~50% of all the deep brain stimulation neuro surgeries in Canada.
First, Toronto Western is one of the major hospitals in Canada! Its neurology center, to quote the website, “is world renowned as one of the top centres in this field”. They do ~50% of all the deep brain stimulation neuro surgeries in Canada.
It’s a big research center too.
Here it is in front of Toronto’s picturesque Socialist Space Needle. 
It’s hard to talk about TWH without sounding like a brochure.
They’re one of the world’s leading Parkinson’s centers. Doctors come from many countries to train there. Other Canadian neurologists send their hard mvt disorder cases there. It’s associated with @uoft.
They’re one of the world’s leading Parkinson’s centers. Doctors come from many countries to train there. Other Canadian neurologists send their hard mvt disorder cases there. It’s associated with @uoft.
So basically: big super badass neurological treatment and research center.
All this means Toronto Western has an outsized impact on the neurological landscape in Canada and internationally.
All this means Toronto Western has an outsized impact on the neurological landscape in Canada and internationally.
It’s a good place to be if you, say, want to make some changes to how a disorder is treated. 
Here’s why this matters for people with #FND:
This big mvt disorder clinic is also home to @integratedmove, a fledgling FND clinic lead by Dr @SarahLidstone. Dr L and team are trying a new interdisciplinary approach to treating FND. https://onlinelibrary.wiley.com/doi/10.1002/mdc3.12888
This big mvt disorder clinic is also home to @integratedmove, a fledgling FND clinic lead by Dr @SarahLidstone. Dr L and team are trying a new interdisciplinary approach to treating FND. https://onlinelibrary.wiley.com/doi/10.1002/mdc3.12888
(They’re also currently one of only dedicated FND treatment programs in Canada; so the clinic’s existence is big news for that reason alone)
As someone who has been yelling to anyone who will listen that the brain doesn’t respect job titles, it’s great that this team has decided to work together collaboratively around **the people who have the brain problems** ...
... not insist that a disorder be just neurological, or just psychiatric, or just “physical.”
That team-based approach was established and tried first for FND — and now the team is already replicating it for use in treating Parkinson’s, and hopefully eventually other movement disorders as well.
Stop and think about that for a sec:
Stop and think about that for a sec:
treating FND as a prototypical disorder of the brain (like we’ve been saying)
rather than some weird “exception to the rule” we’ll never understand.
Heck yea.
So: as part of this advisory group, I’ll be providing advice and feedback for that program, and thus a significant % of people getting treated for FND in Canada.
Can’t explain how unusual this is except to say: there is no such patient advisory group in most places.
People w disabilities don’t just get to like, help design healthcare at most hospitals. Not yet, anyway
People w disabilities don’t just get to like, help design healthcare at most hospitals. Not yet, anyway
So beyond the obviously exciting work itself, there’s a few things that are pretty great about this from an FND perspective:
1. It’s a chance to connect with allies!
I was invited to the board by @SarahLidstone , who as an FND specialist is obviously sympathetic re: FND, but I was also happy (and surprised) to find...
I was invited to the board by @SarahLidstone , who as an FND specialist is obviously sympathetic re: FND, but I was also happy (and surprised) to find...
... that when I got there, other people in the group - people with structural brain disorders - were already hip to FND and ready to talk about positive things that could come from us putting our (admittedly imperfect) heads together.
2. There are also great opportunities to connect structural and functional disorders in context.
FNDs frequently co-occur w other neuro disorders, and may be a sort of logical outgrowth of how the brain organizes itself.
FNDs frequently co-occur w other neuro disorders, and may be a sort of logical outgrowth of how the brain organizes itself.
So by sharing info on FND w folks who know all kinds of things about other disorders I don’t, we can help people w structural disorders understand the functional symptoms that can sometimes come along for the ride.
Most of the learning is going the other way right now though. I got a lot of catching up to do.
In particular, I’ve been learning a lot so far from following @Neuronologist1 and @topdresearch
In particular, I’ve been learning a lot so far from following @Neuronologist1 and @topdresearch
PAB members (including these 2) are also heavily involved in major Parkinson’s patient organizations, and in touch with brain researchers and advocates around the world.
So positive changes at TWH may reverberate in other places.
So positive changes at TWH may reverberate in other places.
Us patient folk work with a handful of faculty (doctors at the hospital) who are involved as well, including @sarahlidstone and @dralfonsofasano.
Also, Tony Lang - who is the head of the whole big mvt disorder clinic.
Also, Tony Lang - who is the head of the whole big mvt disorder clinic.
They provide medical expertise, as you’d expect, and also real practical knowledge of how things are currently done in the hospital system.
Fundamentally, they’re also the ones who make the patient voice matter. We can advise, but they actually put it into practice.
Fundamentally, they’re also the ones who make the patient voice matter. We can advise, but they actually put it into practice.
(Back to FND stuff for a sec)
I AM hoping we can kickstart some serious changes re: FND in Ontario, though. There are a few experts like Drs Lidstone + Lang who understand it, but ...
I AM hoping we can kickstart some serious changes re: FND in Ontario, though. There are a few experts like Drs Lidstone + Lang who understand it, but ...
...the general level of FND knowledge and treatment availability in Ontario is what I’d diplomatically call “extremely bad.”
SO if we can convince like 80 Ontario medical professionals to get on a Zoom call and tell them, say, how to avoid harming people w FND in the emergency room, that’s a really good thing.
Outside of FND, I’m also excited at the opportunity to show up for people w other disorders and just do whatever might be helpful. It’s not all or even primarily about FND advocacy. It’s about combining our powers and finding out what’s possible.
The PAB is also a chance to show that healthcare doesn’t have to be something that happens to people, as Dr Lang recently said. It’s something that can “happen with.”
It’s proof that healthcare can be more democratic, and (hopefully) that it works better this way.
It’s proof that healthcare can be more democratic, and (hopefully) that it works better this way.
So to wrap up, I’m psyched as heck about this cuz it’s a chance to model a democratic approach to healthcare, push research + treatment forward, and connect FND folks w/ the wider neuro disorder community in a positive way.
Also it’s just really cool to have a chance to learn from a group of extremely badass patient advocates 
I wanted to tell you about it here because when debates get heated on Twitter, it can feel like people with FND have no allies. But that’s not the case.
So please give these folks a follow.
So please give these folks a follow.
Anyway, it’s a pretty great place to be in, so I’m going to appreciate that for a moment.
Personally, the experience of having FND almost killed me at least once, and left plenty of aspects of my life in smoking ruins.
I’m trying to rebuild now, and doing ok, but I still have only so many “spoons” to work with. It’s important to make them count.
I’m trying to rebuild now, and doing ok, but I still have only so many “spoons” to work with. It’s important to make them count.
So you can understand why I jumped (not literally, because, you know) when Dr Lidstone kindly extended the invitation.
If I can make having a brain disorder a little easier for the next person I’m damn well going to do it.
If I can make having a brain disorder a little easier for the next person I’m damn well going to do it.
Now, to get to work. 
(A big thank you to Sarah for inviting me to be a part of this, and everyone on the board for welcoming and teaching me)
