Thank you guys all for coming, fantastic turnout.
I'm Chet Moritz from the Center for Neurotechnology.
I'm going to introduce Jon Schlueter in just a moment,
but I have a couple of announcements
that I'm obligated to make because, of course,
we have to thank our sponsors and all the usual things,
right?
So we have a group on the webcast, welcome.
And Scott will read out your questions,
if you have questions.
So please do post those, type those in.
This is sponsored by the Center for Neurotechnology National
Science Foundation ERC and also by the DO-IT ADEPT program.
And so thanks everybody for coming.
I'm going to put in a tiny little plug to the students
I talked to Tuesday.
Thank you for filling out the survey, 21 responses,
you guys rock!
I just need you to do one more thing and that's sign up
for focus groups.
So we already have like four or five people,
we just need like a couple more.
So please do that by the end of the week, more free food.
We need to know how much free food order.
That's why we need you to just sign up for the focus group.
You just got another email from Erica, I think, with the link.
The first link might have been broken-- we apologize for that.
That's all I'm going to say there.
And then I want to spend the rest
of the time introducing who's become a good friend, Jon.
Jon has been in our study of spinal stimulation--
some of you have seen his videos with what the results of that
study was--
but really the point of today is to hear about Jon's experience
and to have a dialogue with everyone,
so-- get your questions about how Jon's life has evolved
over the last 13 years and what we could do as neural engineers
to make his life even better.
I think that's really the topic of the conversation,
but also how has his experience been,
does he feel like he's in control of this stimulator
when it's running?
I know our ethics people--
I know you guys have questions cued up already.
I don't need to prime you.
But that's really the goal, and I
think you'll really enjoy hearing Jon's story
and you'll really enjoy interacting with him.
I know when I'm in the room with Jon
it puts me in a better mood.
So we call that microexpressions, right?
Not microaggressions, but microexpressions--
just these little bits of optimism
that can kind of lift everybody up in the room.
So without any further ado, I want to give Jon about 5,
10 minutes to just tell you about what's going on for him
and then we'll open it up to Q&A for the rest of the hour.
Jon?
Thank you all for being here.
First of all, as a beneficiary of technology
I'm just really grateful that you're all
interested, for sure.
I guess the main ingredients of my story--
pun intended-- I hit a low point 13 years ago.
I misjudged the bottom of a pool and broke my neck in the pool
and floated to the bottom and woke up a week
later with a breathing machine and a feeding tube.
That was 13 years ago and that's where we started.
So I'm thankful for that, just to be here.
I guess to wrap it up I pursued exercise-based recovery
the first five years afterwards.
I really thought if I tried hard enough
I would be walking again.
That's all you ever hear when you
break your neck-- if just try hard enough,
you'll be walking again.
And well, five years into that I kind of ran its course,
I ran out of money and motivation.
I was able to get things back, I could walk a little tiny bit
and then nothing came back and I kind of
just-- you start to get your head around things that nothing
is going to come back and that's how life's going to be
and you move on.
I'm really wrapping things up here--
so I've been here at the UW this whole time.
That's where I get all my care.
I'm part of the Center for Paralysis that they have
and they got to hold of me last year
about the possibility of being in the trial.
I'm pretty picky now.
I wouldn't be part of any trial, I
wouldn't be part of a stem cell trial or something that
was going to give me an unknown result. This one
really made sense to me I've used- I guess
we'll talk about what it is.
It's basically an electrical e-stim that goes over my injury
and forces the communication.
I guess that's putting it in layman's terms,
but it made sense to me.
And so I was excited about it and I started the process
and I was selected.
It was an honor for me.
I took it as a professional job, basically.
Long story short, over the course
of four months I got what I would say
is a lot of notable recovery back.
So 13 years into a spinal cord injury,
where the conventional wisdom is probably not
going to get anything back at this point,
I started getting stuff back.
At the end of four months I've got
enough dexterity in my left hand that I
can play an instrument again and do all the time now.
There's a list of things that happens--
recoveries that happen that we'll get into,
but that's the gist of it.
Without getting too much into injury life,
that's why I'm here.
That's great, Jon.
Do you guys, do you want to-- does
anyone have a burning question you want to just throw out?
If not, we'll ask Jon to go into more details,
give you guys more stuff to hang on.
Yeah, please.
I appreciate your story.
I'm really curious, where were you [INAUDIBLE]
where were you four months ago?
And how long were you in that-- it
sounds like there was a period of just stagnation.
No progress.
I have what's called an incomplete injury,
and so I'm injured at my neck level
but I've got enough signal that goes through
that I'm almost like a stroke--
don't say victim-- survivor.
Thank you.
Or my left side works better than my right side.
My right side is almost nothing and for--
to answer you question--
this hand did nothing.
This was just an appendage to me.
I almost forgot about my right side.
That's how it gets because I could
function with my left side and this side just almost
disappeared.
It's weird.
I would like-- you can do little tricks.
If I pull my wrist back, I can get a grip like that.
So I would just do it, kind of fake it through.
So for, 13--
I mean, I got a little recovery back in those early years,
but for 13 years I've basically been
able to do macro movements with this hand, kind of fake it.
I can do like-- but I couldn't do fine motor skills.
I could stand up a little bit, I could use the tone in my legs
and to activate, I could stand with a walker
for about a couple of minutes, then I got to sit back down.
That's about it.
I've been blessed, actually.
I have had no pain that a lot of people with my injury
has to deal with their whole life.
It was something that was kind of--
it was on my mind.
I didn't have too much reservation
to be in this trial, but that was one of them.
I didn't want to activate pain.
Because that can be-- you talk to people in wheelchairs--
some people would rather give up pain
than walk to start off with, right?
Yeah, yeah.
So up until that point I have done just about everything.
I've done every rep and exercise, day after day,
after year after year.
I was confident I've maxed out my exercise ability to recover.
I guess that's the special thing that we've got.
In four months, to get any movement at all,
I didn't expect anything.
I was hoping maybe a little something
would happen in this hand.
I don't know what to say.
I've said this so many times--
I could not bend my wrist like this.
I couldn't touch these two fingers for 13 years together.
I couldn't bend this finger down.
Internal things happened like my heart rate went up.
I had a real low heart rate.
So every morning I go through this low blood pressure
fainting kind of--
not literally fainting, but if I didn't take care I would.
That's gone.
My heart rate's gone up 10 beats.
I sweat again when it's hot.
That's something you don't realize-- you get a spinal cord
injury, you stop sweating.
There's all kinds of internal things that shut down.
It's not just you lose your walking.
Related to that, can I--
I have a spinal cord injury.
[INAUDIBLE] Particularly, bowel and bladder function?
Could you?
Improvement in bladder function, notably.
I've always-- this is a wheelchair thing, bowel
and bladder stuff, nobody ever wants
to really talk about publicly.
Sooner or later we got to go there.
[LAUGHTER]
Bruce goes straight there on the first question!
Thank you for doing that.
Might as as well get it over with.
So I've always had like some incomplete ability
to control those functions, but they definitely
improved, yes, for sure.
And talking a bit about motor functions, what about-- did you
lose any sensory function?
No.
I don't know that I really gained any.
I've had a certain amount of--
I've always been able to feel somewhat in my hands and legs
somewhat.
I didn't-- not really.
No.
I didn't lose any, either.
I've talked to other people who have this internal stimulator
that looks similar.
He had the one that goes on the outside of your body, right?
Yeah.
[INAUDIBLE] talks about getting almost instantaneously
feeling trunk strength come back.
Was that an issue for you, too?
Should I be repeating this questions?
We talked about that.
We probably should.
That might help, yeah.
Yeah, for our online viewers.
Thanks for reminding us, I had completely
forgotten to do my job.
So for the people online we're supposed
to repeat the question.
Do you want to do that or should I do it?
The question being could I--
would the technology, could I feel trunk strength?
Yes, so there is a--
we do a thing where we put it on just
to test the thresholds so we turn it up higher than what
the actual therapy is.
And when that happens my abs flex like a six pack.
[LAUGHTER]
It's serious, I mean really.
And even with it on therapeutic it's really cool.
It feels-- where I'm injured the nerves affect, say,
to my fingers.
And you can tell where they don't work anymore.
You can just feel the potential.
It's a buzz and you can feel like there's something--
it's hard to explain.
You can feel where the potential for movement would be
and, yes, you do feel it all the way through.
We weren't focused on it because this therapy was on upper arms,
so we wouldn't really go there.
But yeah, I could definitely tell, for sure.
And that's just at the neck as opposed to--
You never had the
The lumbar.
Was it placed anywhere else on your body?
No, just injury, above and below the injury.
And it was just focused on the upper extremity so.
In this room do they all know how the technology works?
That's a good question.
Twenty-one of them do because we just talked about it on Monday.
[LAUGHTER]
I think some of my other colleagues
have seen it presented too many times,
but if anybody has questions, feel free to just ask,
hey, what was--
yeah, for the online audience we'll
just a little bit about it.
So the study Jon was in was called
transcutaneous electrical stimulation.
Transcutaneous is a fancy word for through the skin which
means the electrodes just stick like little stickers
onto the skin on the back of Jon's neck right above
and below the part of his neck that was injured.
Then we use a very high frequency waveform
to pass the energy through the skin
without causing too much discomfort.
Jon can describe what it feels like.
And we try to activate either the spinal cord directly
or the nerves very near the spinal cord
that enter the spinal cord.
And using that we try to get the spinal cord more excitable
and then Jon has to do a ton of hard work
practicing while that spinal cord is more
excitable to see any benefits.
And do you want to tell how it feels?
It can feel how you wanted to make you feel.
The therapeutic dose, I keep saying
it feels like Pop Rocks on your neck.
That's what it felt like.
It feels like you have Pop Rocks--
it's strong enough that I know when it turns off
because my head jerks back.
It definitely pulls on your muscles.
You know it's on.
I miss it, to be honest with you.
It's like--
Like one of those massages that kind of hurts
but feels good when it's done?
Yeah, it might hurt a little more.
OK, a little more than.
[LAUGHTER]
I'm thinking like the really intense massage
where you're like, ow, ow, ow!
But then when it's done you're like, gosh,
that feels so much better.
Yeah, it's like that one.
Sorry, I got lost.
No, it's good, this one's got one.
Out of all the different results or benefits,
which one was the most valuable to you?
The most valuable-- the hand function that I got.
And it's not only the hand function
that I got that I can use, it really unlocked my head,
I guess.
It's like I'd kind of given up that anything is going to--
I've accepted, I guess, you kind of have to.
Nothing's coming back, so to re-unlock
that things are possible?
It's not much, but say my thumb here--
I have not moved that in 13 years.
I believe now wholeheartedly if I can do this,
then I can get to here.
I know I can get to here.
So not only did it unlock a lot of physical things,
mentally I'm a different--
I'm at a different spot.
Yeah, hand for sure, function.
Kind of going with that-- what were your expectations going
into this study and how have those changed with everything
you've gone through?
So, expectations going into the study
and how they've changed with everything you've gone through.
I expected, to be honest, nothing,
because that would be status quo.
I was blown away because we got, pretty quick,
we got some little twitches.
And that, again, just for my head was gigantic.
And where it's going to go--
what was the second part of your question?
I mean, I guess I just wanted to know what is your outlook?
That anything is-- we're back to anything being possible.
That's big, instead of just accepting that--
you have to understand, when we were injured 13,
15 years ago, it's like there is a little window
they would give you.
They'd say about two years is what you had and after two
years, probably nothing's going to come back
and if it does it was some stroke of luck or whatever.
Now, I don't know.
I just have--
I don't have a fixed attitude anymore.
I don't know what--
I believe more can come.
My anxiety comes from that things won't make FDA approval
and I won't be able to use it.
[LAUGHTER]
Can I ask a question over here?
I was interested to hear you say that you're not interested
in the stem cell things in part because you don't--
there's so much mystery, you don't really
know what will happen.
So I'm curious, why this one and would it
matter if it was implanted rather than outside your skin
or implanted somewhere else in your body?
Personally, it does matter.
Because I've got-- my answer might
change if I had less hand function
and I might be able to put more on the line.
But where my life was, I wouldn't be willing to risk it.
Even if I was guaranteed--
I don't know, it's hard to say.
I guess I think even if I was guaranteed
these results, I still--
it's a big commitment to rip your neck open
and get implants.
I respect anybody who wants to do that it's just, no.
And that's what appealed to me was that I've used e-stim
before in physical therapy.
I get the technology and it just made sense to me.
And they did a good job.
I expressed I had concerns.
I didn't want to fire up pain again.
I didn't know what.
But it was--
I was reassured, the whole team.
Once I knew the facts, I was pretty undaunted.
The first time that I had it on, though, it was kind of a trip.
How so?
Well, because we did the tolerance test first,
which takes you pretty high.
I'm talking like you're like slapping your hands
and I kind of wondered what I was doing.
Sounds a little scary.
But after that, I guess I miss it.
I would put on right now if I could.
And have the benefits-- they last even though you're not now
getting the stimulation?
That was a concern.
Like do you put in all that work because this is hard work.
It's more like-- no, it is.
It's like tedious work.
It's like playing with preschool toys and you can't do it,
but you're going to do it anyway for hours and hours and hours
until something works.
And then what something works means something twitched.
So it's a daunting process.
I missed your question.
How did it last?
How did it last after--
The lasting effects did last, is the thing.
We just had-- so the trial went for four months
and then I've been checking up and I have a standardized set
of exercises that I do.
And I've preserved, if not increased, all my strengths.
It hasn't gone away, it's awesome.
So here we are, I just had it like two weeks ago.
I could do everything that I couldn't do when I started.
That's in two months.
That's two months after the end of the intervention.
We'll do one more check in three months,
and that's usually where we stop following so you can get back
to your life if you want to.
And who knows where the line is.
I still do all those exercises at home.
I don't want to lose anything, so I seriously--
if you drive by my house there's a man
inside playing with preschool toys.
[LAUGHTER]
Tell us about your guitar yesterday.
Well, that's kind of my success story, what I got out of it.
I played guitar before this injury
and I had enough hand function to just make it frustrating.
I could pick it up and I could maybe do some stuff
and I just--
I never wanted to play it again, really.
Once I got this finger back--
this finger used to be straight, it would not bend.
So this is part of this therapy, this started to work
and, again, I started getting it back.
I play guitar now every day, every morning, every night.
I play probably four hours a day.
I wore out my jack last night, is what he's getting at.
I play it so much that I wore out the circuitry last night.
And that's really cool, too, because it's
something to have something taken from you
and when you get it back you appreciate it a lot more.
Now it's more like I don't think, gosh,
should I go play guitar?
It's like I get to play it and so I do.
I play it all the time, it's awesome.
That's been my favorite thing that's happened.
In that time when you felt you were stagnating what do
you wish were different about the environment.
What resources you had or.
I'm just going to paraphrase the question.
It's a great question.
So it was asked during the time that Jon was stagnating
what resources, what environment could have been different
or did he wish was different?
Boy, everything is would be--
boy, how do you--
I mean, everything is like--
Accessibility is a big one.
It's hard to quantify this.
Everything becomes specialty, everything from cars to--
I would just take--
I say this not even jokingly--
I would take a pair of hand rims that worked in the rain,
for instance.
There's so many sticking points to--
I call it wheelchair life.
Boy, that's a hard question to answer, to be honest with you,
because there's so many.
If you mean it in terms of what you can do--
No, I think that for example hand rims
that people who are designing for people with disabilities
don't really think of like wheelchair accessibility
and stuff like that.
Just accessible housing, for instance.
I mean, I'm in a good situation now,
but that took forever to get.
Just the world is not wheelchair friendly, period.
Boy, I wish I had a better solid answer for you.
I will-- I'll get back to you.
There's a long list of things that could be made better.
Start with the rims because in Seattle once it rains,
it's over.
You can't go outside.
After your stimulation and then having stimulation stopped,
do you feel that we should have a better way of continuing
such a program?
Like the FDA has the approval process, but [INAUDIBLE]..
So do you feel that we should have two tracks for approval
or some way of accelerating it?
That would be amazing.
I wish I could sign my rights away and I would just--
[LAUGHTER]
Yeah, I mean I would be on it now
because I've experienced it.
Nobody really knows what the long term effects
are going to be, like what's going
to happen 40 years from now.
Yeah, it's frustrating.
The FDA process is really frustrating.
I mean, selfishly, it's like I have
this technology I know works and it's behind a door
and I can't get at it.
I'm thankful that it happened and yet I
can't have it anymore.
It's weird, so that's I guess a big part of why I'm here.
Yeah, I don't know what the answer there would be,
but yes, for sure.
It's hard, too, because you don't
want to propagate something that's not safe.
I get it.
So I don't know what the answer there is.
Yes, is the answer.
Can I ask a follow up on that?
How precise does the location have to be?
Because there are always do-it-yourself--
not that I'm recommending it--
I'm not repeating that into the microphone.
[LAUGHTER]
How much precision is there about
exactly where the electrodes are placed in order to have
the benefit that you found?
You want to ask Fatma to answer that question?
Yeah, I defer to the experts.
I was looking to the back for--
Based on the [INAUDIBLE] so we can easily
find [INAUDIBLE] so we put around [INAUDIBLE]
and we put the other one just up about [INAUDIBLE] You can find
more precise points, but [INAUDIBLE] but it
doesn't have to be [INAUDIBLE].
So the trial was four months?
How quickly throughout the trial were you seeing quick changes
and improvements?
For example, you talked about your index finger
and how it was essentially straight.
So how quickly through it were you able to go straight
to bending it?
How quickly was it coming?
So it was four months, the first and third month
was physical therapy only to isolate it.
You know, that first month of just physical therapy only was
a little bit eye-opening because I did get a little bit of--
that first month without the technology I got a little.
There was a little bit of movement still to get out.
We progressed to the point where I could pick up
a ping pong ball with these two fingers
and then we we'd go down in scale and we got to a diameter
where I couldn't pick it up anymore.
The video shows this.
As soon as they put that on and turned it on,
it was like pinch, I could pinch that thing all day long.
So instantly there was a little bit of instant.
And the other stuff, that first--
well the second month of trial, within the next immediately.
And we just-- almost without fail, I feel like--
every single session, if we focused
on something that had potential-- like my thumb,
there's a little potential-- by the time
it was over it was more.
I mean, it's like do the math.
I was only allowed to do it for the trial three times a week.
What if I did all day?
I don't know.
So, quickly, and when the gains would show up, they would stay.
I would very rarely lose them.
Yeah, it's amazing.
My question is actually exactly related to that.
How much have you found that you have lost some function based
on, compared to maybe what gained right after therapy?
And in that sense, what is--
if for example it's not [INAUDIBLE] you don't receive
that stimulation anymore, what is the--
how far is the expectation that you
would lose some of that ability that you have gained?
I don't know if there was any expectation
I would lose it, necessarily.
I mean, there was some hope that once
the nerves started talking that that strength could
build on strength, and that seems
to have been what has happened.
That has happened.
I mean, since the trial has done my hands have gotten stronger.
I just keep working them.
I think they're lasting gains, I hope.
[INAUDIBLE]
Maybe at the very, very, very tip
of the spear I might get a little bit
more movement with it on, but as far as doing--
I could pick up a--
I could do everything I was doing
all the time along the way.
I just proved this two weeks ago at the tests, too.
The standardized tests is things like picking up
coins and putting them in a slot or picking up a key
and putting it in a lock, for instance.
Simple kind of stuff that is when you can't do it,
you can't do it.
Can I follow up?
Absolutely.
I was thinking about this earlier.
Has this given you more independence?
[? You've got ?] [INAUDIBLE] and you're relying--
do you feel like you have more mobility and more independence
because of this?
Yeah, I mean one thing--
driving, for instance.
I've used a driving pin which is like a steering wheel adapter
device so I can use it, whatever.
And I don't use it anymore.
I don't need it.
So it's like there's enough strength in this hand that
didn't make me more independent per se,
but yes, overall it does, actually.
My wife could tell you there's probably like 20 things less
I ask for help for a day, especially
in opening little things.
So yeah, sure.
Every little bit helps and that's
what I kind of reiterate.
It's like the prize is to go run and jump again,
but every just little half level, every half vertebrae
makes a big difference.
I guess something you don't realize
until you lose your spinal cord that how
your interaction with life depends
on all your vertebrae firing.
So every half one that I get back, yeah,
it makes life more enjoyable for me, for sure.
Here's a question for Chet or your team
if anyone wants to answer this.
Could you talk about the varieties of response
that you see?
Like how many patients have you worked with and what's
happened, and especially he's talking
about keeping these things afterward
and it sounds like you're really meticulous about working it.
So what happens when people don't?
So I'll answer just because I'm close to the mic
and then Fatma's there, so she can come up and chime in.
Jon is our seventh participant.
We have two more in process right now, eight and nine.
We've worked with a total of nine people.
Everybody has improved in something
except for one individual who chose
to withdraw from the study after the first month
for personal reasons.
Almost everyone has improved in their hand
strength or dexterity and almost everyone
has improved in some type of autonomic function,
but in that case it's been different for just
about every single person.
So Jon talked about his heart rate and about sweating.
I think that's the only person I know
of that's had that particular result.
One gentleman had a dramatic improvement in bladder function
and was able to actually stop using
intermittent catheterization as a result of two times
through our study.
I'm trying to think of some of the other ones we've had.
We haven't had blood pressure.
Fatma can help me out.
Almost stable, so it wouldn't have changed.
Sure.
Their blood pressure was already OK.
Heart rate improvement.
We've had some people that have gotten sensation
back well down their trunk.
That's actually one of the few things
that-- and almost everything has persisted
beyond the stimulation, up to three months,
even up to six months in one case
where we're able to measure at six months.
But sensation actually came back our way.
So one gentleman got normal sensation
only back to his navel from his collarbone,
but it came back halfway to his nipple line
after the stimulation stopped.
That's probably the most clear example, actually.
Scientifically, it's kind of cool, right?
There's this causality with stimulation.
Almost everything else goes up, reaches a new plateau,
and essentially stays there.
I mean, it might fade just a little bit
or what often happens is it actually overshoots
a little bit right after stimulation
and then comes back to the same level it was
at the end of the stimulation.
Does that makes sense?
There's a little bit of an after effect--
It doesn't go back to where it was before?
Never seen that.
But everybody's a little different.
How activity-based--
That's the other point I want to make
and Jon can reinforce me on this.
Part of the reason Jon has done so well
is that he's so motivated and so dedicated to practicing
using his hands, whether he has a stimulator running
at the time or whether he's at home afterwards playing guitar
for however many hours a day.
His wife is incredibly supportive,
she buys the preschool toys that we use,
and so he has them at home, including--
And makes me use them.
And makes you use them, yeah.
Oh, so it's not your motivation!
Now we're getting the secret.
[LAUGHTER]
OK, that's what I thought!
So those of you guys who are old enough
to remember friendship bracelets,
remember those teeny tiny little beads
on the friendship bracelets?
Jon went from barely able to pick up a ping pong ball,
to pick up a marble-- you saw a video on that-- you have not
seen the video of him picking up those tiny little beads
that I can barely see for the friendship bracelets.
He can do that with his right hand which
is his more challenged hand.
And so that-- but I don't know if we
would have come up with that.
Maybe Fatma brought in those beads,
but Jon's got them at home, he's practicing at home.
Because let's face it, how often do you really
need to put a coin in a slot anymore?
I mean that's like a retro test, or even a key in a slot.
You can't just talk to your lock and it opens?
I mean, come on.
But friendship bracelets, those are always going to be cool.
[LAUGHTER]
A couple more.
Yes, Scott.
So this comes from part of a question from Barbara.
She's curious to know do you feel
if your participation in this study
has helped them develop the technology
or use it better or anything of that nature?
It's a question for me, but I just took a bite
so you have to try to answer.
[LAUGHTER]
I would think so.
I don't know how to answer to that.
It totally has and part of what it has helped with
is realizing the importance of the practice
and the motivation.
We kind of always knew the stimulator alone probably
wouldn't do it.
Someone was going to have to do at least the exercise with us,
but John's recovery is so far beyond average for a study
and we think we're starting to figure out why.
It's not just that you're a miracle worker,
it's that you do a ton of work outside of the study.
And so we've now started to talk about designing home therapy
programs, teletherapy programs to motivate other people who
might not be as intrinsically motivated or as
supported at home so they can continue
to get those hours of practice even if they're not
sitting there with us.
Because we don't think the stimulator
needs to be running anymore based on what Jon taught us.
You said at one point you felt potentiated for six hours
after each stimulation session.
And by potentiated-- Jon can tell us--
but I think it means the spinal cord was more awake,
had more capacity to do things, more ability to move.
So we want to take advantage of that now and that's
a direct result of your participation in the study
and also you're opening up about your experience
that's helped us think about how we could better help people
in the next round.
So my question is is the hand function itself
more valuable than the ability to do tasks with utility of it
because there are people who are working on, let's say,
brain-computer interfaces where you would compose something
with your mind to do a task that's a useful task, right?
So it's very practical and you're
getting it done, but just the motion and the function
of your hand even if it's not doing
something that's directly useful,
is that more important to you?
Is hand function more important than completion of the task?
[INAUDIBLE]
If you could have a robot do the task for you
or if you could do it yourself.
If I-- if both my hands were like my right hand
and they were both just twitching a little bit,
then yeah, it would be more important to get the task done.
With me there's--
I crossed the threshold where I can do it myself.
In my case it's more important to have a hand function,
meaningful hand function.
I think I get what you mean.
It would be a different story if both my thumbs were just
twitching like this one and I could do anything.
Then, yeah, that sounds awesome.
You know, in spinal cord injuries you'll
find they're all case by case.
I don't think there's any two people that got
the same story or the same--
so I don't know how to aggregate that.
But I would assume people who have less hand function, that
would be more and to get the job done, yeah.
Well, I think just from the beginning
when I was first injured I recovered very substantial.
Just the ability to do something for myself, whatever it was,
was really important.
And having somebody else do it or some robotics to do it.
Like, if it was a last--
If that's all it was--
Yeah, there is something empowering
about being able to do it yourself, whatever it is.
Part of being human, I think, right?
Yeah.
One over here and then we'll come back to [INAUDIBLE]..
Yes, you talk about a lot about all the great things that
are happening with this technology,
but was there anything that you didn't like?
There were-- I had some things to--
I had a bad case of hives, for instance.
It gave me arm hives really bad.
That was-- nothing, you know, I just took it all--
Nothing was that-- I mean, that's negative,
arm hives-- but everything else I just took it as part of,
no, it was all kind of exciting to me, to be honest with you.
And the more I went into it--
yeah, no, actually I just had a pretty good attitude about it.
That's because I wasn't experiencing anything
too bad, other than the hives.
I didn't have the pain.
If I'd started getting pain I'd have a different answer
for you, but it was just all a positive experience for me.
So let's talk a little bit about the hives
because I want to know more about your experience.
We've talked about it, before I want to hear from you.
So I recall that it happened about the same time you
started sweating again below the injury, is that accurate?
Yeah.
So we reported this to IRB.
This was an adverse event.
Jon developed a rash on his arms and it was
an uncomfortable rash, right?
It was something you needed topical cream to treat.
Yeah, all the way up and down.
Yeah, exactly.
And so, it was unexpected at the time, not something
we'd ever seen before.
Fortunately, it resolved.
It's sounds like when you saw your physician,
she gave you an over-the-counter-- not even
a prescription, right?
She just had over-the-counter Benadryl cream or something
to treat it.
Then it just went away.
And it went away, but the sweating stayed.
And never came back.
Never came back.
Sweating stayed.
So scientifically, though, it was kind of cool for us
because it was like, hey, we restarted Jon's autonomic
nervous system and he started sweating and he got this rash--
that wasn't great--
but it was temporary.
Well, also that the hives were--
I have a strong family history of them--
great thing to be--
but my dad can call them up at will depending on what he eats.
And so it's kind of you might think it's something
that was in me.
Like what you were saying, it was an autonomic kind
of response that happened that I was
like genetically predisposed to be experiencing anyway.
So it was like you were saying, it was kind of a good thing.
It's weird.
Scientifically, it's kind of like we
unlocked Jon's natural predisposition to have hives.
[LAUGHTER]
It might not have been the goal we were all shooting for
and thankfully they resolved, but from a scientific point
of view it's like, wow, that's powerful,
that that stimulator doesn't just make his hand move better,
it doesn't allow him to sweat again,
but actually brings back--
I wouldn't go so far as to call it an autoimmune response--
but it's could be kind of like that, right?
It runs in your family, it came back briefly.
It's an adverse event, right?
And it's now in the consent form.
It says "this technology may give you hives".
And it'll be in the packaging slip,
probably, if this is ever approved by the FDA, which is--
and that's why you read that long list
and it's important to read that long list,
because it could happen to you and Jon helped us
discover that this is possible.
Question about-- and maybe [INAUDIBLE]
is about people with neuropathy, has the stimulation
affected that positively, negatively?
Fatma, can you help me out?
I don't feel like we've had anyone with neuropathy.
You can come all the way up and talk to the mic if you want.
The question was people with peripheral neuropathy--
I have to repeat it anyway, Bruce,
because the mic has to here it.
Central neuropathy.
OK, right.
Central neuropathy, sure So neuropathic pain?
So people who have-- some people who have spinal cord injury--
have what's known as neuropathic pain.
It's a really incipient, nasty, nasty pain.
It doesn't respond in normal kinds of pain medication.
Actually, it only responds really to THC in most cases.
And it can be debilitating and it's not the kind of thing
we want to kick off, for sure.
So Fatma, do you recall, has anyone had this kind of pain,
has it gotten better, has it gotten worse?
[INAUDIBLE] used to treat the [INAUDIBLE]
in spinal cord injured patients but any type of [INAUDIBLE]..
So I don't have any experience if [? it can ?]
help [INAUDIBLE] pain or [INAUDIBLE]..
I was worried about developing it.
That was my concern.
I have it.
If it got worse, that would really--
It would be a non-starter.
Yeah, exactly.
Thanks for sharing that.
That was exactly my question.
Have you-- because you had mentioned the pain--
[INAUDIBLE] has this stimulation in your trials,
have you brought that on in any way?
You implied that you haven't.
Thankfully we haven't, right?
That would probably stop the trial.
That would be that kind of-- especially it was persistent.
If the pain started during the stimulation
and didn't resolve when the simulation was discontinued,
I think the technology would be shelved.
And that's the only sort of pain that you were worried about,
Jon?
Or were you worried about just some other--
No, it's that kind of pain.
I'm lucky, that's a pretty typical story
for a spinal cord injury.
It's just a burning--
I've heard it described many ways, and it sounds awful.
Maybe, Bruce, if you don't mind describing
the quality of the pain?
Because I think people don't really appreciate it
until they hear it described.
A lot of time for me-- and it does vary--
but now that I'm talking about it, I feel it.
Sorry, maybe you don't need to describe it?
I'd say it's moderate, but really it's the feeling
like your foot goes to sleep or something, that tingly, pins
and needles.
Everywhere, I kind of have a line diagonally
across my chest.
It's in my right arm and also my left hand.
This side is much stronger and below that line is pretty--
it's tingly and it goes up and down.
Sometimes it's cold, sometimes-- occasionally-- it wakes me up
at night.
But that's life.
That's a good description, and I think everybody's is different.
I've heard it described as a searing, burning, stabbing pain
right at a band level of the injury.
Obviously the tingling, numbness, annoying buzzing--
but it's very-- it doesn't respond to opioids,
it doesn't respond to over the counter.
It's just there.
I take ibuprofin which takes the edge off at least.
That's good.
I experimented with CBD, THC.
That's actually much better for spasticity.
Interesting.
Almost miraculous.
For neuropathy--
Not so much?
And I think everybody is different because I know
[INAUDIBLE] doesn't, or--
the THC is the only thing that works for pain
and nothing else will touch it.
Do you have spasticity issues as an affect of that?
It helped.
Yeah, my spasticity kicks in when I sleep or try to sleep.
I just don't sleep, it's awful.
And that is one thing that's crept back.
When, on the trial, I was sleeping like a baby, actually.
It really improved my sleep.
It gave me-- my legs are what do it.
They kick.
They kick hard, they kick as hard as you
could kick your leg.
It usually happens about 20 minutes after I fall asleep.
They'll just kick and you're wide awake.
And that helped my sleep.
And now that has started to return just a little bit.
My sleeplessness is starting to come back a little bit.
That's why I'm a little off.
Thanks for sharing that, actually.
We should follow up on the time course of that,
because we've seen the spasticity take a while
to respond initially-- like a couple of weeks
into the trial--
before the specificity changes and then
it lasts for a couple weeks after.
That's true, that's the one thing-- maybe
to Kate's question-- it does seem to come back to normal
to pre-treatment levels is the spasticity.
But it did changes, that's a good point, though.
The arc changed.
It increased to that at first.
It was really severe, especially when I would lay down.
Something happens when I lay down.
It's like my tone pattern sets in.
But I would feel like a lightning rod that first month.
I kind of forgot about that, actually.
And then it resolved, too, for the better.
And I had three months of some of the best
sleep I've had in 13 years.
What we've noticed in other people--
and Jon I thinks situation parallels this--
the specificity gets stronger initially, but either more
productive or less often or something.
It's like you'll have one big spasm
at the beginning of the night and then no more,
but that big spasm is bigger.
So that, depending on your priorities,
that could be a bad thing.
Yeah, it's hard to explain.
I mean, something happens when you put two hours of power
on your neck.
The power hour!
The two hours of power.
Two-hour power.
Do you see as a treatment for [INAUDIBLE] periodic refresher
things or some day might actually these things become
commercially available and you just
have follow-up things to do.
Yeah, that's one option.
Obviously, we're not involved in the commercialization
ourselves, but the company that we work with has two models.
One is to give it to physical therapists
and just use it in parallel with the treatment that's
happening in the clinic.
That's probably how it'll initially roll out
because then there's supervision,
therapists are doing the treatment any way,
they can get reimbursed for the treatment,
even if the device isn't reimbursable yet.
But then the dream is-- and if it turns out to be really
safe--
and need these maintenance doses that some people at least
would be able to be reimbursed by Medicare, Medicaid, et
cetera.
Take these home and I don't know how often
you'd need to use it, maybe not every day, maybe once a week.
Or maybe all the time.
Maybe you'd want to use it all the time,
maybe you put it on for specific tasks.
It's so cool because it's so portable
and you can put it on your own neck, basically.
You can figure it out.
It's just this little case.
The last time I was here for the last event
I was able to play guitar for a couple hours with it on.
I'm not kidding, I was better at guitar that night.
It just accentuates whatever you try
to do with it, in my experience anyway.
I want to know if a person that doesn't have an injury
puts it on, how does that go?
Have you tried that?
We won't put it anyone's neck who doesn't have an injury,
but we will put on the back of your arm
if you want to see what it feels like?
We've done that demo.
You want to know what it's like on the neck.
I want to know if enhances motor activity.
Does it have a similar effect?
It's possible.
No one-- well Yuri [INAUDIBLE] tried it
on the lumbar cord of a couple of people who weren't injured.
That was published in 2015, but I
don't think they asked them to do anything interesting other
than they saw that the legs would start to cycle if there
was no gravity involved.
The legs would start to make this walking rhythm, which
is kind of cool.
CPG activated the central pattern generator.
I wager it would.
I think it would.
I think it's got a lot of applications.
It's an amplifier for your spinal cord, right?
Because I was a rock climber before this.
I'm sure if I had this on you could grip harder
and you could--
so for aging and what not--
I don't want to speak where I shouldn't speak.
But I think, yeah, I would love for my grandparents
to wear this thing.
I think it would help their strength.
I don't know how it couldn't.
Well, you've suggested two possible markets
for the company.
[LAUGHTER]
Which is really important, actually,
because spinal cord is a small market.
It's a good thing it's a small market.
Between the ab roller that you described
earlier, the Ab-a-tron!
And guitar players.
And now the guitar players, rock climbers, and now
though the older adults-- that's where my ears really lit up.
I was like, that's a market.
Baby boomers-- baby boomers are a market.
How sensitive are the devices and how do you
see the cost going down?
Sure.
So what little bit I know from the company,
the current prototypes I think cost about $10,000
to produce because they're kind of one
off, alpha units, just the materials, right?
The company's model right now-- this is going to sound bad
at first, but bear with me--
the company's model is to actually,
because the volume is so small, and they
have to stay in business to provide these and make them
better over time, is to actually sell them at a very high markup
but to get insurance to cover all that.
So a current TENS unit or FES unit
is already like $6,000 to $10,000
of clinical-grade stimulator and insurance
covers essentially all of it.
And so their goal, because this is more sophisticated
and delivers 10 times the power and probably has 10 times
the results, is to be not 10 times more
expensive but double or triple.
But not to gouge the person with spinal cord injury
or the clinic, but rather to just
charge a market medical device market
value that allows them to maintain
their solvency as a company.
Because we've seen some pretty sad examples of people
like Hunter Peckham's company failing economically, not
functionally.
He has an implanted muscle stimulator
called the Freehand which lets people
do all kinds of great things that their hand.
It's no longer offered because the company
failed economically.
Actually, the company that acquired the company
that he started and then the company that acquired them
decided not to continue marketing it
because they weren't making money on it.
So these things can happen beyond the control
of the original inventors, beyond the control
of researchers.
So that's their goal.
But again, it's not to gouge Jon out of $20,000,
it's to let Medicare, Medicaid, and private insurance
pay the $20,000, which they're happy to pay
for your surgeries, for your scanning,
for all the other things that you're already doing.
So that's how we envision it.
I mean we as in the people I've talked to at the company.
But you had another question about who else would buy it,
or was that just the cost?
It was more about the costs involved [INAUDIBLE]..
Yeah, there's another option, right?
I mean, the device itself is going to cost $500 in materials
to make.
So the other option is to sell it for $500 or $1,000
and go for quantity.
But I think that would only work if you turn out to be right
and then it helps rock climbers and guitar players
and people who sit on the couch and want six packs.
Then maybe you could make it a consumer device
and cost to be exempt, I think.
If I'm not speaking out of term for the FDA.
It's a device that doesn't have a medical indication,
it just has--
it's electrically safe.
And then people with spinal cord injury
could buy it on a website and choose how they want to use it.
So those are totally different strategies
in terms of regulation and cost and claims
about medical benefit.
There's lots of questions over here,
I'll let you guys sort out who goes first.
So [INAUDIBLE] have you noticed a difference in cognition
at all?
Only in terms of attitude and just opening up,
which shouldn't be underscored, actually.
I mean-- do you mean in terms of do I think--
doing math quicker?
[LAUGHTER]
[INAUDIBLE] your thoughts or critical thinking,
analytical thinking.
I would think maybe just indirectly just based on more
positive mindset and kind of indirectly, but not directly,
I don't--
I'm not reading faster.
So in the rehabilitation literature
I've been reading a lot there's kind
of like two big camps I see.
One camp is this rehabilitation through stimulation, actually
more biological processes.
And then there is this camp where
it's kind of exosuit where they have assistive devices
to help model [? gaits. ?] So my question to you
as an end user do you see one as more valuable than the other
if both could theoretically task?
Yeah, I think they work together.
I mean, I think it's going to be--
I kind of consider both of those, like your exoskeleton,
it could be used as a therapy.
With a stimulation and an exoskeleton
that's be like shooting two birds.
It's like doing the exercise and doing the motions.
So yeah, kind of two separate questions again.
I would take the exoskeleton, sure, like in the meantime.
But then I would love to use it with that to make it mine.
Like in the end, yeah.
It's weird, it's like I would still I would want my own body
back over like an Iron Man suit, quote-unquote,
like you're saying.
But I wouldn't turn an Iron Man suit down if you've got one.
I have a question for you, Dr. Moritz.
So does this theory or concept work
with other types of stimulation besides
The concept of exercise training and plasticity and things?
I guess the concept [INAUDIBLE].
Sure, I think it definitely does.
We certainly think that's how epidural stimulation works,
right?
You turn the stimulator on, it's not a magic cure, people
have to do a lot of rehabilitation
to get benefits from epidural stem.
There's less studies and brain stimulation
but it does appear that there are
ways to stimulate the brain that can change connections
within the brain.
It's been applied less to people with injuries.
But in the basic science literature,
that's looking pretty convincing.
So I don't think this is just a spinal cord phenomenon.
I think it's probably a central nervous system
phenomenon to the extent of the peripheral nervous system can
have plasticity probably applies there as well.
I was just going to ask.
So you mentioned that there are multiple patients.
So if you're looking at degree of completeness
You said he had an incomplete injury.
I guess, where does Jon rate in the completeness of injury?
Yes, so Jon he's just C. So how do the people
compare in terms of injury?
So we rate things on a scale of A, B, C,
and D. Most people in the room are
Es with the exception of our esteemed guests.
John is a C which means he can move a little bit
and he can feel a little bit.
We've work with people who are Ds
which means they can move a little bit more
and feel a little bit more.
And we work with people who are Bs
which means they can't move at all below the level of injury
but they can feel something below the injury.
Those people return when it is one of the two people
one withdrew from the study the other one finished the study
and was able to return movement of their fingers
it was very weak.
And only functional and combined with other types
of tricks like the tinnitus the script
that John was talking about
We have not worked with anyone who
is Asia A, although the epidural stimulation literature now
has a number of people who are Asia A.
So no movement, no sensation, considered
the most severe type of injury, who began to move again
even on the first day of stimulation
and some never gained impressive ability
to make stepping movements and things like that
with many months of rehab.
So I think the stimulation, that's implanted or not,
can help people from where they are go to the next step.
But I can't say qualitatively that one
is better than the other
You might see more function-- if someone starts with a more
function-- you might push them to a step that looks more
functional but it's also pretty inspiring
to take someone who can't move at all below the wrists.
Firsts you seen their thumb and fingers start to twitch
and eventually you see them making
measurable-- you know, four newtons of pinch force.
That's not a lot but it's a lot better
than zero movement and zero force.
Of the nine patients you've had is there
a correlation between the degree of benefits
and the timeframe from when the injury happens
to clinical trial time?
There's not and that's the most interesting part.
So Jon is 13 years post-injury now,
this is the farthest out that we've worked with.
And his recovery I would say is one of the best
and we've worked with people one year out
and they've had recovery, too, but different.
And we've worked with people who are four to five years out
that's pretty typical, three to five,
and there's no correlation which is really exciting.
Because as John mentioned when you're injured
the doctor tells you first six months,
if you're going to get anything back it's
going to happen in the first six months, maybe for another year
after that and then whenever you have at that point,
you're done.
And we're now starting to learn that it's not
that the spinal cord is done, it's
that reimbursement for insurance, reimbursement
for physical therapy--
I'm totally serious.
You get intensive rehab for three to six months,
that's where the gains happen and your insurance
company stops paying, and most people can't
afford therapy services and that's where they plateau.
Unless you're John and then you keep
working super hard on your own.
Or unless you're Bruce and you go and fly to Florida.
It's been months doing gait training on your own dime
and then you walk out of there with crutches.
Not everyone's going to have those results.
But it takes that personal investment
to keep getting the therapy services, which is kind of sad.
It's a sad commentary on our system.
And the mindset goes downhill, too.
It's like six months after injury,
you're like, I'll be walking in six months.
And two years-- and after two years--
it's hard to get your head around that.
The data that you've been told.
Nothing's going to happen.
In some ways it was easier 13 years because I've learned
to be a lot easier on myself.
A lot more gentle from myself than was earlier.
So it's not so maddening for me to sit and do
something for two hours.
I just laugh at my so anymore.
I don't care I used to be, it's so frustrating.
If you were to sit and try to pick up your heart, whatever,
for two hours and not do it, you'll
clear the table at some point.
So maybe that's helped.
I think my mindset is just better now, too.
It's no big deal.
I'll sit and played something for four hours
if it takes the time.
We kind of got off there.
It's the attitude.
It's something like.
Some of questions of of the questions
of how things the mindset has changed that's part of it.
Did you have a question?
[INAUDIBLE] has been waiting for a while.
I had a question.
I was wondering, you spend so much time playing guitar
throughout the day.
I wonder, has that, in itself, explained
your exeptional recovery?
If you do something enough you've rewired your brain.
Yeah, it certainly doubles as a physical therapy device
and [INAUDIBLE] made that point, that was a good point
that I didn't realize.
But yeah, because you're always using some part of your brain
when you're doing physical therapy, like the not fun part.
And it kind of pairs the musical part, yeah, sure.
I just was wondering if that had been explored at all from
a research standpoint .
That's a really cool point, Wayne.
There are therapy tools, like people
play Guitar Hero to try to motivate
people to do home therapy.
There's a music club that David Reinkensmeyer
invented which is basically sensors on a glove.
You touch your fingers together to make different notes,
again in a gamefied environment.
It's a really interesting idea to think of actually
how the musical part of your brain
pairs with both motivation and movement
and whether there's an amplified benefit to that.
It's certainly something you enjoy doing,
so I think that helps a lot.
The fact that you enjoy doing it, so you do it more
and then you get a higher dose of therapy and you
get the dopamine surge that reinforces the plasticity.
We know that's true.
Any time you do a movement or a sport, whenever you enjoy it,
your brain is wired to learn how to repeat that
over and over again.
So that's really important.
It does-- it has improved my hand as a therapy device,
though, because there are songs I
can play now that I would have had no business even trying.
Recently, I just learned another one.
I try to learn a new song a day, to be honest with you.
And it's the same way a guitar works with a normal hand.
If you play guitar, all songs are hard when you first try it,
but then they start to become easier.
That's what happens, so yeah, I've gotten better.
What song?
Sugar Magnolia.
[LAUGHTER]
My most recent one.
I have a question about independence
and the physical changes you described
and shift in mindset as well.
Have you noticed any changes in your dynamics
with certain friends [INAUDIBLE] like that.
Well, being able to jam with friends
has made a big difference.
And yeah, it's hard to quantify my thoughts,
because I'm generally positive or whatever.
But it's an imperceptible change, yes, and unlock
and-- it's hard to explain.
I just put my mind on one direction like I keep saying.
It's acceptance, I guess.
And there's a lot of unempowering thoughts
that come with that kind of mentality.
Of just like accepting and, oh whatever,
I'm just going to be an observer for the rest of my life.
So yes, imperceptible, yes for sure, though.
Yeah, it does change the dynamics, the quality--
it's imperceptible, it's not like my friends
became like super awesome.
But in a way I guess maybe it's my confidence or something.
It's hard, but yes.
I say yes, but I have a hard time telling you exactly how,
but yes, for sure.
And it helps, too, with my family
and what not because I've been pretty driven now for 13 years.
To walk or bust, it's kind of like get over it a little bit.
I feel it kind of like--
I never felt any bad, I don't know what I'm trying to say.
But I'm I feel validated a little bit.
After all this, even if it's just a knuckle,
I feel like full speed ahead.
It's hard, yeah.
It's a good question.
Is there anything else you want to chat with Jon about
or should we wrap it up and we can maybe
do some one-on-one stuff.
Sound good?
Help me give Jon a huge round of applause.
[APPLAUSE]
I'm just going to make an announcement,
and then we'll wrap it up.
If you do need to head out, it could really
help us if you could sign in today so I've
got a sheet I'll keep by the door if you're willing,
that would be great.
Thanks, Scott.
Awesome, and thank you, Jon, for sharing with us.
Thank you all for being here and listening.
Anyway, if you want to chat with Jon one-on-one on your way out,
please stop by, grab a-- there's a couple half cookies left.
I tried not to eat them all.
I have to tell you a funny story.
So Scott always does these videos.