Two days ago I went through a brief period of hell.
For 30 minutes, I had to have my adaptive deep brain stimulator basically turned off so that I could have an MRI done to see if an abnormal bulge spotted the day after getting my aDBS implant had changed at all.
Luckily, there was nothing abnormal detected. However, it did serve as a rather painful reminder to me of what my Parkinson’s would be like today without some of the recent advances that neuroscience has made. For 30 minutes I was told to lie still in a very cold room while my tremor and dystonia returned with more force than ever, all while sliding into a tube that could have killed me…
Now, you might be asking how was I able to go through this without getting some new and unwanted holes perforated through me? Well, I’m not going to pretend like I understand how, but for anyone wondering, this guideline explains it all.
However, what that guideline does not explain are all the emotions patients go through as they are forced to lie as still as can be. Hard for me to sort through them all myself so I picked out a few quotes that embody for me some of the thoughts I had during:
“Isn’t it a bit unnerving that doctors call what they do “practice”?”
― George Carlin
“Life is choices, and they are relentless. No sooner have you made one choice than another is upon you.”
― Atul Gawande
“She had become accustomed to being lonely. She was used to walking alone and to being considered ‘different.’ She did not suffer too much.”
― Betty Smith
“There are so many ways of being despicable it quite makes one’s head spin. But the way to be really despicable is to be contemptuous of other people’s pain.”
― James Baldwin
(On that last quote I want to extend a huge thank you to the MRI nurse at Toronto Western Hospital who was on duty the morning of November 2nd. I did not catch your name, but your reassuring voice and kind eyes got me through that 30 minutes of hell. You didn’t say much to me, but you didn’t have to, you were just a human who could see that another human was suffering and did what you could to make sure the procedure went as quickly and as humanely as possible. From the bottom of my heart, thank you.)
“In the words of the philosopher Sceptum, the founder of my profession: am I going to get paid for this?”
― Terry Pratchett
“Hospitals should be arranged in such a way as to make being sick an interesting experience. One learns a great deal sometimes from being sick.”
― Alan Watts
“Wherever the art of Medicine is loved, there is also a love of Humanity. ”
“A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”
― Atul Gawande
Those last quotes lead me to think, as I often do, about neuroscience today, and why it fails so many of us. Not a day goes by anymore that I don’t get a plea from some corner of the world desperately asking for help. Some are from dear friends that I have known for years. Unfortunately, asides from a few pithy words, there’s nothing I can really do. I wish more than anything that I could do what the nurse mentioned above did for me and tell them that if they just hang on for a few more minutes that they’ll get some relief.
Why they must continue to suffer is a problem that should trouble us all. If for no other reason than because one day that person will be you. What kind of care would you want to receive in the moments when you are most in need?
Now, what prompted me to write all of the above was a video I found while scrolling through YouTube this morning from Derek Muller (@Veritasium). In my opinion, this should be essential viewing for all neuroscientists (and many other so-called experts). It speaks to why medical science has failed patients the world over for so very long.
Here is my own brief summary of the most important takeaways from the video above for neuroscientists working on human diseases. I believe if more research centers and companies adopted these practices we would get to better therapies for people much faster than the current pace of medical research:
1. Valid environments. Meaning, study humans, not cells in a dish or animals trapped in cages, both lack the ability to recapitulate almost everything vital about being human and they too often deceive us into thinking we have a “cure” for what we think we see in them, not in people.
2. Get timely, repetitive, feedback. This message is mainly for regulators, we must find a way to allow scientists, working as partners with patients, to experiment, and iterate, quickly. That does not mean to throw the door open suddenly to everyone with an idea, but we desperately need to do a better job of getting us from the world as it is, where Pharma and patients are almost never allowed to even be in the same room, to the world as it should be, where we are far more free to work together, share ideas, and experiment, for the betterment of all.
3. Regularly challenge your own assumptions. There are a lot of good and bad ideas out there, the only way to tease them apart is to thoroughly interrogate each. My favorite quotes here, which I think all students across all disciplines should embody, is from Jacob Bronowski:
“It is important that students bring a certain ragamuffin, barefoot irreverence to their studies; they are not here to worship what is known, but to question it.”
According to Derek Muller, the man behind the video above and the excellent series Veritasium, if you are not doing each of the above than you can not claim to be an expert. I would take it one step further when applied to neuroscience and say that if you are not doing each, the chances that what you are working on will ever translate to humans is thin-to-none.
Now, I often hear retorts from neuroscientists defending their craft who point to the few successes the field has had as evidence that if they just keep doing what they’ve been doing that more such results will surely follow.
Well, for all the reasons highlighted in the video above, I disagree. Most people in the field are, to be very frank, working on dead ends. I believe that if they were more rigorous (read: more scientific), and if they actually worked with (or at least on) people living with the diseases they purport to study, they too would recognize that.
I have also come to believe that once you have a therapy that you think will work, you need to try it in people as soon as you know it is relatively safe to do so. I met a doctor at the NECTAR conference last week who embodied this ethos in his practice. His name is Dr. Clive Svendsen and he has been championing a new approach to treat ALS for over two decades. Unfortunately, the talks that we all gave last week at NECTAR seem to have been pulled from public viewing, but here he is giving precursor to the same talk:
I have come to believe that the example above from Dr. Svendsen should guide the way forward in neurodegenerative research and if it were widely practiced, would bring us closer to a world in which patients do not have to suffer as much as they do today.
Nothing like a brief period of hell to give you perspective.
I wrote this after experiencing an MRI scan –
You’re here for your scan ?
Lie down and try not to move.
We know this might be hard for you
so we’ll strap you in tightly
Here’s a panic button for your palm
Relax – stay calm: do what you can.
You’re here for your scan.
With grace, you try not to move
although it’s hard for you to do.
Your right leg dances
for the first twenty minutes
to the pulses of sounds, imagined as music
of the minimalist sort.
It’s a way to maintain
some smidgen of humour, some salvage of identity
as multiple versions of you
are pummelled into being
‘til now an intimate secret of bone and brain.
After forty-five minutes,
you give yourself up to the rhythm of the song
and it’s penetrating lyric.
“I see you
I see through you
I now know your boney bones, your fleshy flesh
I take your picture, deeply, loudly, lengthily
I picture you as you have never seen”.
You read about the making of poems
and, naturally, their need to scan the page.
You learn about imagery and the purpose of meter
and that to scan a poem is to release its music.
On the way home, you stop for a coffee
served by a man who sees straight through you.
Without a word he carries your cup
to a table and with kindness – or is it with pity
– he turns you inside out.
Amazing Catherine, thank you!