[dramatic piano music]
- [Matt] We're gonna do it, okay?
- [Viola] Okay, thank you.
[sobbing]
- Okay.
Should we call the guys?
Did you call them?
Hey Larry.
- Hey Matt, how are you?
- Good, how are you doing?
- Very good, thank you.
- Thanks for doing the shoot.
- No problem.
- Mind if I sit here?
- Yeah, go ahead.
[clock ticking]
I've had MS since 2000.
Started with a cane, the manual wheelchair,
power wheelchair, and now I
can't move anything below my neck.
After I was diagnosed, I let go from
my job, I went on some experimental
drug programs, it just made me seem worse.
Tired, feeling nausea, and I was
sticking needles in my body every few days.
The Rebif, the Avonex... I went through, those drug trials.
It just felt, what a scam.
What's going on, why isn't it doing anything?
They have so many millions and millions
of dollars, where does it go?
What do they do with it, there's nothing to show.
Just help me, man.
- You have to be incredibly tough
to fight multiple sclerosis.
- It's like you've got you're worst
enemy inside you.
- And I had the overwhelming
feeling that life was over.
And there was nothing worth
living for anymore.
- My legs went numb.
And I went basically blind.
My only knowledge of MS was
Richard Pryor. It was like game over.
- [Doctor] This is on the rise.
- [Reporter] Many MS patients are holding
out hope that a medication will be found.
- This is what it looks like.
- A million and a half don't even know
they have it right now.
It's a ticking time bomb.
MS is a disease where the immune system
goes astray and thinks that the brain and spinal
cord shouldn't be there and try and attack it.
- [Patient] It's a long needle that goes into your muscle.
- [Patient Two] I take Tysabri, Copaxone, CellCept,
[mumbles] I get these jolts of electrical pain.
- Producer, director Matt Embry was
diagnosed with multiple sclerosis.
- We believe there's about a half a
million people in the United States,
maybe over two million people in the world.
- I'm young, I've just had a baby,
how can I have MS?
- [Reporter] Multiple sclerosis remains a mystery.
No cure exists.
- I've got one of the most incendiary
chronic diseases on the planet.
We've got to stop the lies
about illnesses like this
so I tell them the truth.
- How much higher can the stakes be?
Billions and billions of dollars, and yet
the system is set up in such a way
that it can be corrupted easily.
- I was like shaking and crying.
I felt so vulnerable.
- Bye guys.
- All of a sudden I get a phone call from
my brother that Matt had been diagnosed
with multiple sclerosis and I literally
almost collapsed, I mean I couldn't believe it.
- We'll see you later.
- He really didn't have any idea at all
until that one day he said I think I had a stroke.
We said, "What?" He said, "I just got all this
numbness and sensitivity on my side and everything."
I knew very very very very little about
multiple sclerosis except that it was bad.
- I was a nurse before, so it had a
huge influence on my image of MS.
It was tough, that first few weeks with
Mathew 'cause I think all of us
didn't know what to say to each other.
We were all just pretty shocked and pretty devastated.
- It was so bizarre to have this feeling that
my older, athletic brother was fairly quickly
going to degenerate and be in a wheelchair.
- It's always a pretty crushing stigmatism around
it that just, you have MS and you're done right?
- When we got the word it was like someone
had punched me in the gut, and I really
thought it was a death sentence, and so
I have to admit I broke down, I mean I
started to cry, and just here's my
nephew, in the prime of his life,
and being handed a death sentence.
Pretty devastating.
- I knew it affects your whole family,
and to watch a loved one's body deteriorate,
and their mind, I think is probably the
most brutal thing that can happen to
a parent and to also the person that has MS.
Sorry, sorry.
You don't want that for anybody.
- [Matt] Different people in the place and
take it from an international perspective.
- [Crew Member] It's very beautiful too right now with
the trees, not that we wanna make postcards.
[church bell rings]
- Okay, I'm George Ebers, I'm a
neurologist and MS researcher.
My aunt died of MS, age 30.
I never knew her, but that had some influence
on me 'cause I thought well if there's some genetic
component, that might be relevant to our own family.
I remember thinking there's so many clues,
this should take me about a weekend to sort out.
Did a lot of reading about it.
It's taken longer than a weekend.
MS has all the things that make life difficult,
I mean in terms of for a solution.
No matter what question has been asked of MS,
you hardly ever get a black and white answer.
It's shades of gray.
[dramatic piano music]
The things that are thought to be important
are early life exposures like infections.
Probably some aspects of diet.
Sunshine exposure, and the likely
mediator there is vitamin D.
Then there are other things which are random triggers.
The first part of the disease seems
to be autoimmune and inflammatory mediated,
but the second part is what matters.
The second part is what disables people.
The second part is what accounts for most of the grief.
First part's treatable.
Second part doesn't seem to be.
- This is the bad part.
- Inject it slowly.
- Count to 10.
- I hate this part.
- The pharmaceutical industry, they would argue that
they're not giving any false hope, what they're
doing is they're saying that this drug will
do this, this, this, and this, which has been shown.
So, if you look, it says it reduces the
attack rate by 30%, 50% right?
But when you ask them okay, well does
it make any difference in the time
it would take for me to reach a wheelchair,
or in the time it took me to develop
secondary progressive disease? They'll concede,
they don't have any evidence for that.
So if people get this progressive thing happening,
then there's no evidence that any
treatment actually makes that better
or prevents it from getting worse.
So when someone comes along and says
we've shown that there are fewer
wheelchairs required, or there are
fewer people who need a cane, and so on,
I'll be pleased and satisfied.
Haven't seen it.
- I unfortunately have tried five of
the six FDA approved medicines, all of which
were unsuccessful in slowing my disease.
I have hope that the research that's
being conducted is going to be successful.
- We keep saying the word long-term progression, long-term progression, like a natural
course of disease, it's like...
I just can't help but think, it's like hey,
once the switch got turned on, yeah I caught it.
Am I fighting it, yeah I'm fighting it, but it's just
like once that switch is on, it's just a countdown.
And I have this wave, like there's
nothing more than live just staving off the inevitable.
[somber piano music]
- There's John Plaxton who's your great...
Great grandfather, he was born in
1846 and I was born in 1946.
- Okay, so he's great great grandfather.
So who built it, he built this, he created this tomb.
- Yeah, and then they just kept
putting them in as they died until
they filled it up with six bodies.
He's the one who made all the money.
My brother said when he died he was
worth, in today's money, 50 million.
I always saw, you see, money doesn't buy
happiness 'cause I saw this family.
They all had tons of money and they
just drank and it wasn't a happy family.
- No, just disaster.
- So that was the best thing I ever learned,
money and happiness have a very very low correlation.
Nothing has changed my mind on that.
- It builds you a big tomb that you feel creepy about.
- Yeah.
- You and mom don't have plots
or anything like that do you?
- No.
I'm gonna scatter my ashes to the winds of the Arctic.
- All right.
- Assuming I can get somebody to haul them up there.
- Yeah, I'll do it.
- I had assumed for some reason oh yeah,
I'm sure they have drugs and I'm sure
they have a way to dealing with this.
When the doctor said no, there's no drugs,
there's nothing we can do, and we just
have to hope, well then that really
was the time it really sit in this
is a real serious problem, and so
immediately your mind starts thinking okay,
I have to try and figure out what the heck's going on.
- Hello, doctor.
- How do you do, Matt?
- Good.
- Nice to see you.
- Thanks for doing this.
- All right, our pleasure.
- Truthfully, I thought you guys were just trying to scam.
- It might be a scam if you weren't talking
to someone who's been doing brain surgery,
legitimate brain surgery for 23 years,
with an impeccable reputation.
I have a lot to lose if I were looked at that way.
Our model MS patient, the last time she was
able to walk without a walker was 10 years ago.
She came to us for stem cells.
We believe that stem cells can hone in
on areas of damage, find them selectively,
and repair them and regenerate them hopefully.
You need to repair the damage
that's been done by your own body.
I think stem cell work should start
with your own stem cells, you being the
pharmaceutical industry, you are the factory.
The stem cells are taken from
the patient's own abdominal fat.
The patient comes in, gets the liposuction,
and an hour later the cells are ready
to be implanted into the brain.
- And what happened?
- We agreed to treat her, she fit
the criteria, and she had her first
stem cells implanted back in May of 2014.
She's had miraculous recovery.
She started with a walker being
able to walk one inch at a time.
Most recently she's walking without any limitation
and she walks at least 25 feet in one minute.
She's making an amazing progress
and word is she's driving a car now.
- Hello.
You want us to come in this way?
- Just got stuck.
[clock ticking]
- And then you're still driving yourself to the clinic.
- Do I think stem cells can reverse a patient
who's had already the damage done?
In my opinion the potential is there,
especially with what we've seen
already with a few of our patients.
It's extremely optimistic for me.
I love what we're seeing.
What I'm hoping to do is to have a larger study.
We just need some financial support would be great
so that there would be no out of
pocket expense for the patient.
- Shouldn't there be significant industry interest in this?
- You would think so.
Yes, I would think there would be
significant industry interest in
moving forward with this, but where
the industry wants to go is produce
a drug in the form of a stem cell.
A drug in the form of a stem cell
is a stem cell that's been altered.
A stem cell that's been induced
and that becomes their product.
There is an incentive for them to
create that product and then get
FDA approval to use that product
and then it becomes their product.
Right now the product that we use is the patient's product.
They're the production factory.
Furthermore, are these stem cells going to create a monster?
That is the big question, and so we just
need to follow up and see how these patients do.
- Thank you so much for doing this.
Okay, we're gonna do it, okay?
- Okay, thank you.
- Okay.
- Thank you.
- I knew what I was walking into.
It's easier to talk to doctors and
specialists and that, when you're
looking right in the eye of it?
That's the darkness right?
That's the viciousness of the disease right?
It's tough, I mean we're at the same age and everything.
It's like Jesus, I leave just feeling sick.
I leave feeling like I have symptoms,
I leave feeling like I'm going downhill.
[sobbing]
Okay.
Should we call the guys?
For me, that's the dark place you fear, that's that
one bedroom studio apartment on the ground floor.
Did you call them?
It just breaks your heart right here, that story she
falls down, no one's there to pick her up, it's just, gosh.
Everything in me just wants to be like yo...
You have to come with us.
You see that desperation, it's like...
You wanna help, but it's like
what can I fucking do here, right?
- [Jeff] Hey there, how are you?
- [Matt] Good, how are you doing?
- [Jeff] Good.
- Hey Matt, good to see you, honey.
Traveler, you've been all over the world.
- Yeah, it's been a pretty good run.
- Well come on in, come on in, welcome, welcome.
- I better turn off my screen,
there's some spoilers on that.
- There's some House of Cards
spoilers on there or so, yeah.
- Oh wow.
[laughter]
- Eventually when that's all done then I orchestrate it.
- That's amazing.
- Pretty cool isn't it?
It's a fun job, I love it.
- [Matt] That's great, and you're feeling good?
- Yeah, pretty much it's been stable for quite a few years.
[clock ticking]
- So this is where Jeff does all his
recording and he leaves it set up.
He manages the orchestra right from here,
he conducts and he runs the film.
Which has really been great because we
get an orchestra in here and the players
love coming out here, it's like a vacation.
- What happened, how did you know?
- Yeah, it was a flare, I mean it was a real,
I mean the same thing, it was actually
the numbness thing, started in the arm,
went down to the leg, and by the time
I got back, I was actually in Austin
at a film festival, by the time I got
back it was like man, I gotta get this
checked out, had an MRI and boom, there it is.
The early years especially were very
terrifying in the sense that our son
was still quite young at the time,
so I'm a dad, I've got a career, I'm a husband.
I had a lot of uncertainty about what
I was gonna be able to continue doing
'cause one of the first things you learn
about MS is there's a lot of uncertainty
in terms of the type of course it's gonna take.
I have friends in their thirties that are in wheelchairs.
- We met in college and got married in college,
so this is my best friend, and seeing him
suffering and feeling helpless, I wanted
to figure out how to help him.
That was my number one goal.
So that's why I started digging into
research because I think you were gonna say your
neurologist really didn't give us anything concrete.
It was just well we don't know what this disease
is, it's incurable, you have it, good luck.
She actually said to him do everything you
wanna do now because his prognosis as a man with
the kind of presentation he had was not good.
That's when I got serious about learning
what this disease was and reading the research.
I started reading PubMed and I kept coming up
with a lot of vascular connections and when
Doctor Zamboni's research was published
I sent it to Dr. John Cook at Stanford
who had been my contact there and I just
had him read it and I said do you think
there's anything here, and he gave
it to his colleague Michael Dake.
[somber piano music]
- I of course had never heard anything about it.
I was completely perplexed, it sounded
outlandish and a little left field.
It goes against a lot of dogma and
a lot of what we believe to be true
in practice of treatment of MS.
I am not a neurologist, I am not a
MS doctor, but I've been always open
to listening to these things, and we
talked about it and held together
as a pathophysiological response that
we see in other parts of the body.
Many places of the body we deal with
venous narrowing, whether it's the legs,
the liver, the kidneys, and we're very
comfortable with that, we never thought
about could there be similar venous narrowings
in the neck that might affect the brain.
Why wouldn't there be?
- Mike Dake said well let's just look at Jeff.
Let's just look and see what's going on.
- We studied him with magnetic resonance imaging
and lo and behold what we saw was identical
to what was being seen by Doctor Paolo Zamboni.
The pictures were almost superimposable.
So indeed he did have venous narrowing
of a significant degree, and again this was to
us almost shocking, I mean how could this,
we never heard of this and yet here it was,
identical in this first person to what was shown overseas.
- It was real.
His jugular veins were completely closed off,
I mean we could see that on the MRV
and there was collateral circulation.
And as Doctor Dake said, you know I treat this.
- This was the first time I had talked
to a doctor, really since I was diagnosed,
when they actually saw something and
they felt like, somebody told me, looked me in
the eye and says well I can do something about that.
When I did go up to Stanford and had
the stems put in, it was almost as if
somebody had turned on the lights,
it was very strange, and it's even strange
to talk about it now because it was so
palpable 'cause you're awake during
this procedure and it's almost like as the blood
started rushing into my brain I felt awake again.
It was so wonderful.
- He's now out six or seven years and doing very well.
- [Matt] It wasn't just him, you started
to look at other patients too.
- Well we started to examine patients.
This community is a very tight knit
community of patients and they are
networked in a very tight way, so all of
a sudden a number of patients were coming
to us without any, we were not soliciting
in any way and we started looking at
patients and we found a very high preponderance
of patients with similar venous narrowings.
We started treating patients and
we saw very interesting results.
- [Matt] So how many patients did you treat?
- Well it's a long time ago now, we have
not been really treating patients for three or
four years now, but with MS I think we've
probably treated approximately 59 patients.
- [Matt] And they all had narrowing in the vein?
- Not every single one.
I think there were two patients that we did not
treat because they did not have
what we felt was significant.
- Where is it today?
What's happened?
- Well right now I think at least the interventional
treatment of CCSVI has basically gone to zero.
- So why have you stopped?
- Well the pressure I think from all
sorts of various special interest groups
has conspired to stop everything, at least
in our country and I'm sure in Canada as well.
I'm well known in a certain specialty,
not neurology, certainly not even MS,
I was doing this 'cause we were very
interested and thought this was terribly exciting,
but I had many people come up to me at
national, international meetings say
just watch yourself, watch yourself,
you don't want your career destroyed by this.
You don't want your reputation which is so good
to get sullied by associating with this sort of stuff.
They thought it was complete hogwash,
they thought it was, obviously did not
have any basis in scientific, and unfortunately
therefore we couldn't get funding to do the type
of trials that were necessary to legitimize it.
I'm not going to bash anything to do
with the pharmacologic industry, but these drugs
as they come out obviously are fairly expensive.
What we're talking about for treating,
our current treatment for narrow veins,
are done by clinically undifferentiated projects.
A balloon is a balloon is a balloon.
That's a low budget item.
As such, there's not a lot of money
to be made by industry as opposed to
pharmacologic with the latest, greatest new drug.
It'll get there, and all this is good stuff,
it's just not in the timeframe or with
the accelerated tempo we might like.
Like I say, it'll take another generation.
- I came in there, my expectation was that we
have the answers, I just can't get them out there.
No, that's not the case.
We don't have answers, we have some theories,
and to treat it, it's gonna be a long time.
Now are they chasing it a different way than
the current pharmaceutical's neurologist, yes.
Do I think it's more hopeful in
the long run, yes, I do believe that.
But I don't have time.
I don't have time.
And neither do anyone else with MS.
It's like from now, for the doc,
fuck it man, going back talking with doctors,
we're gonna hear the same kind of thing.
What we gotta do is tell the story of
get out there and start doing different
therapies that may have a positive effect
on you 'cause you gotta try to stop it now.
If you wait and sit back and hope that science
is gonna catch up and the doctors are
gonna catch up, you're gonna die, man.
- Matt, come on in.
- Behind the scenes?
- Yup.
- Thanks for doing this.
- Oh, well thank you.
- Five, four, three, two.
- Well MS is a disease that affects
thousands of Canadians, in fact some of the
highest rates are right here in Saskatchewan.
Matt Embry is one of those people
who suffers from MS, Matt from Calgary,
and he's embarked on a speaking tour
to share his story on how he's
treating the disease, Matt, thank you
so much for joining us today.
- Yeah, thank you so much for
having me, it's great to be here.
- You're talking about how you're
treating the disease, it's been 20 years
since you were diagnosed with MS.
- Yeah.
- Tell us a little bit about how you're coping.
- Right, so in 1995 I was 19 years old
and was diagnosed with multiple sclerosis.
[gentle piano music]
- Well this is 20 years ago, so I'm
having a little hard time being exact,
but I just remember saying okay, what is this?
- All of a sudden I get a phone call,
he was about 18 or 19, from my brother
that he had been diagnosed with
multiple sclerosis and I literally
almost collapsed, I mean I couldn't believe it.
- So bizarre to have this feeling that my
older, athletic brother was fairly quickly
going to degenerate and be in a wheelchair.
- Well it was definitely tough, I mean you
definitely have a cloud come over the
entire house, so I mean there was a
pretty crushing stigmatism around it
that just, you have MS and you're done.
- I was a nurse before, so it had a
huge influence on my image of MS.
It was absolutely terrifying.
Sorry.
You don't want that for anybody.
- I had assumed for some reason that
oh yeah, I'm sure they have drugs and I'm
sure they have a way of dealing with this.
When the doctor said no, there's no drugs,
there's nothing we can do, so immediately
your mind starts saying okay, I have to
try and figure out what the heck's going on.
- He more just dug right into the science.
We largely hit the ground running where
his office just became stacks of papers.
There was something new every day in
terms of the research or what to do.
- And my brother's an astounding guy,
he's a PhD in Geology, but I mean he's
one of the great researchers and he just
beavers in on that subject of great interest
to him and obviously this was a tremendous
interest to him because of his son's issue.
So he went to work and he researched every aspect of this.
He settled on diet.
- Science says it all.
To me you gotta have hard science, that's it.
In terms of an illness, well, you wanna treat cause.
I thought with the dietary therapy we were treating cause.
- He basically got Matt on a very rigorous diet
as I'd sometimes joke with Matt the diet's
worse than the disease, but it worked.
- Just remember months where we ate broiled chicken
or broiled fish, like that was it,
and vegetables, it really got down
to nothing and then built it back up.
- If they had had a drug that said okay,
this drug, you take this drug,
then you'll be absolutely fine for sure,
then we probably would've gone on it.
I'm a believer in drugs that actually are effective.
- When he was diagnosed he had a very
serious case, and I mean as a result of
what he's done subsequently, it's worked
fantastically, and I mean look at him.
The guy looks like an all-star and he's
been afflicted with it for more than 20 years.
- And then after I'd done my research
at the start, I put it all in a paper
and I decided I should give to the
MS Society of Canada and say oh look,
I found this information and I wondered if they'd
be interested in distributing it to their members.
- And I was very surprised when
they just were not interested at all.
Why wouldn't they want this information?
That was my first inkling that something was not good.
- Well MS is this mysterious entity and I think
that there hasn't been progress in terms
of knowledge about the cause or the cure.
Since basically the diagnosis was created
by Charcot back in the mid 19th century.
It's up to the MS Society to marshal hope.
- The MS Society Canada was once a
highly reputable, respectable organization
that really fundamentally was
there for the patient's interests.
And...
I've been very disappointed in their lack of...
Activism on these issues.
- What I do know is the MS Society collects a lot of money.
I mean it's in the tens of millions of
dollars that the MS Society raises a year.
- They were very happy to be seen as
having a greater bottom line of income,
but no one got too worried about the
fact that the money was actually
coming from the pharmaceutical industry.
The International Federation of MS Societies,
more than 30% of their income comes from the
pharmaceutical industry, they don't talk about it.
You try and get it from their annual
report and you have to work away
at it, at least you used to.
Then suddenly you got relationships between
the people hiding the charities and
people from the pharmaceutical industry,
all of which, by the way, is behind the scenes.
- The drug industry and its relationship with
the MS Society makes it advantageous for the
MS Society to go along that path of talking
about drugs, of speaking hopefully about drugs.
- Then the pressure that should be there,
from a fair-minded charity person to pressure
the whole situation in the direction of
finding something that really makes a
difference in the long run, starts to lessen.
It's all very subtle, so when they start
to badger the pharmaceutical industry then
the money that they used to give for
MS chapters to have their coffee meetings
sometimes dries up, sometimes the big
donations tend to dry up, and so
they very subtly influence what goes on.
- Drug companies have a conflict of interest.
They run a business, they wanna sell
their drugs and they need somebody
to promote it, the MS Society's a
good vehicle to do that through.
- Just at the end of 1999 I had figured
out vitamin D was a major factor.
I remember the first half of 2000
trying to get the Multiple Sclerosis Society
to tell their members something about vitamin D.
- Time and time again over the years we've heard
vitamin D referred to as the sunshine vitamin.
A Calgary father is so convinced of its benefits,
he is giving doses of vitamin D
to his son who suffers from MS.
- [Reporter] When Mathew Embry was
diagnosed with multiple sclerosis it launched
the geologist on a search, a search for a cause.
Ashton Embry noticed a link.
People in northern countries like Canada
have much higher rates of MS.
They also get less sunlight and the
nutrient that comes from it, vitamin D.
- It's totally safe, they have nothing to lose,
and they were just adamant, they were
not gonna tell anybody about vitamin D.
That was it.
That was the final blow for me of
trying to be involved with the
Multiple Sclerosis Society of Canada,
trying to cooperate, trying to do things with them.
- I don't think there's anyone there
that is actually pushing any, a useful agenda.
They abrogated their responsibility for being
a buffer between the pharmaceutical industry
and the patient population a very long time ago.
[somber piano music]
- Well it was one, Joan decided well we got all
this information, we should get it out to other people.
- The charity was my silly thing
of we can raise some money and get
the information out there, get the
research done into diet and vitamin D
and those kinds of issues that the
MS Society wasn't dong, and we as families
with the disease, we need to have those answers.
- This is now 1996 and the big change
was during that, when you actually had
more information available to people
besides from your doctor, and so you're able to
get things out, and so okay, let's make a website.
That basically was the start of it.
- My wife has MS.
The day I found out, the first thing we did
was went on the internet to search for answers.
The one website that helped greatly was
Direct-MS because we were looking for some
solutions now, not wait for drugs or see a neurologist.
I called up Ashton Embry, met for lunch
and met some of the other board members
and my wife decided to go on a diet right away.
And to this day it's been the right decision.
- Whenever I run into anybody that has
a friend or relative or somebody they know
in the early stages of MS, I say
you gotta get on my brother's website
and find out, this is stuff you're
not gonna get through normal channels.
I mean it's really been helping people
all over the world, I was very impressed
when you get these e-mails from all over
the place complimenting them and it
was helping them tremendously.
- I'm a scientist.
Everything I do and anything I tell
anybody to has to be backed by science.
This is information you're not gonna
get from your neurologist or any MS Society.
We did hold a talk about 18 months ago.
We didn't get much turnout.
I think Matt felt bad about that.
That night is the first time he seemed to
start talking about okay, we gotta do something.
- [Speaker] And his only knowledge of MS
up to that was that he had sat on a...
- What is our goal then?
Our goal is to get the diet and the
high dose vitamin D to the planet.
- Yeah, no, I agree, you have to
hit those, those first guys who
were diagnosed are just being swarmed on
because they want them on the drugs,
you get that kind of drug, he's on
a drug for 40 years, 50,000 a year,
he's worth two million bucks to them.
Each guy.
That's what you want here 'cause
they're gonna have the biggest benefit.
I mean bang, you go on the vitamin D,
you go on a diet the day after you
get diagnosed, the odds of you
progressing are extremely low.
But if you don't do it for 10 years until
you've got a lot a lot a lot a lot
of problems, well it's gonna be a war
of trying to get these guys who
are first, just when they're diagnosed.
- Right.
[somber piano music]
That woman there wants hope.
My dad has created the diet, he's created
the program, he's done all the research,
he understands what it's gonna take for people
to get healthy and how to stop the disease.
The only purpose in doing any of this is
to get the message out that this is the way.
Hello and welcome to MSHope.com.
I'm Matt Embry and I have multiple sclerosis.
I created a website called MSHope.com
which is a series of videos and PDFs that
give people with MS newly diagnosed or
already living with the disease the roadmap to
what I did to stay healthy for more than 25 years.
- MS Hope is Mathew's vision because I think
of his career, he knows how information
should get out to the public, so by
taking the information that's on
the other site, minus dad's research,
and pointing to an easy way to follow format is a
real gift to people that have just been diagnosed.
- There are a number of other foods...
I am not gonna preach in people's face,
but all I'm gonna say this is what I did,
here's the road map, here's the equation,
I created the website, I try to reach
the masses, I try my best and if
that's not good enough, well...
It's not good enough.
- A Calgary man diagnosed with MS is speaking out.
- To share how he has been largely
symptom free since diagnosed in 1995.
- If I can get out there and spread
the message and even change one or two
people's lives, then that's what I've gotta do.
- He's sharing how diet, exercise,
and vitamin D has kept his symptoms at bay.
- [Reporter] He also had a procedure to
increase blow flow from his brain.
- That's right, I have had the
CCSVI procedure a few years ago.
We're not going to say it's the magic bullet, and we're
not going to throw the baby out with the bathwater.
- [Reporter] The lifestyle has worked so well that he
and his father are now setting out on a free speaking tour.
- My goal in doing the speaking tour across Canada,
over to London and into the United States is to
create as much awareness as I possibly can.
- This is quite a change from what we've
done in the past 'cause as a family we
tend to be quite private, I don't even
know if all of our friends knew before
this recently publicity came about
that he even had MS in his past,
so this quite a shift for both of us and it's
not something that I'm necessarily comfortable
with, but I'm happy to support behind the scenes.
[gargling]
[laughter]
- What's that?
- MS. - MSHope.
- MSHope?
That's right.
- When he launched MSHope, we did have
some concerns that, I know some of
the institutions or bigger societies
would have an issue 'cause it is
drug free, it is anti the medical establishment.
- Could they sue him, could they go after
his business, could they go after us,
our credibility, what could they do to us?
- I am holding a letter that was sent
to me from the Multiple Sclerosis Society of Canda
threatening me with a potential lawsuit
accusing me of an infringement of the
Multiple Sclerosis Society of Canada registered trademark.
Furthermore, they have a right to seek temporary
and permanent injunctions as well as damages.
- When I started writing about alternative ways
of dealing with MS, of managing MS,
this is way back in the 1970s, I came up
again the MS Society of Canada.
They were beyond abusive, beyond abusive.
They threatened me with all kinds of things,
now had I been a member of the
medical community they would've had
me struck off, I mean there was no doubt
about it, they were in for blood.
- I have to admit I was a little
surprised when he got a cease and desist
for a website that isn't trying to make money.
- Please respond via e-mail within
seven calendar days indicating your
intention to cease and desist the use of
the MS mark or confusingly similar trademark.
We hope that this issue may be resolved
this way so we can avoid further legal remedies.
- It blew my mind again, I think why wouldn't
the MS Society be excited about here's
a good website that might be of real
value to help the people with MS.
- Well it's difficult enough fighting
off the effects of multiple sclerosis,
now a Calgary man is finding himself
in a battle with the MS Society of Canada.
Matt Embry says diet, exercise, and a
controversial medical procedure has allowed
him to stop taking the usual MS medication.
He wants to share his story with
the world through a website.
The problem is the MS Society says
his logo is too similar to its own.
He has since received a letter from lawyers and has
taken the site down until further changes are made.
- They're focused on the wrong thing, man.
You got a great website, great responsible website
seeking out help for people like myself.
- We're gonna have to change the logo
and the color scheme up top and the header.
We have to go through some of this
content and change that as well.
Your video slides are gonna have to change
as well as the PDFs, and then we're gonna have
to put this disclaimer that they're asking for.
It's a pretty aggressive letter.
- They're going to sue somebody for point
on an M in the logo instead of curing my disease?
- The MS Society has silenced everybody
'cause they're all afraid of lawsuits.
I think you gotta stand up to them.
They're bullies.
- What happens is they want to rubbish you
and they do a very good job of it, I have to say.
They're Goliath, they have power and money
on their side and they have magazines
of influence and so on, and you're
just an individual person with MS.
- I mean to make an assumption,
it's resurfaced things for Mathew.
Mathew's living with the disease and
he's living with the fear and the thing
about coming back, so I think that
this has again resurfaced that.
Because he's now dealing with his MSHope site
that's a lot of pressure on him too right now.
- Well it's like I have two options,
I could just totally stop this whole thing.
It's crossed my mind.
To be like fuck it, I don't need to be
sued by the MS Society, I don't need to
put up this stupid website, I don't need this.
And it's so out of the bag.
Clair came home, she's like...
Telling me about how her friends at
school have seen the videos and stuff.
I'm like fuck, this is supposed
to happen 10 years from now, right?
I think that was my biggest fear
going into this thing, my biggest fear
has been, since my kid was born,
how I was gonna have that talk.
I feel like I've lost control of this thing again.
The first time I feel like the disease took my body,
this time I feel like it's taking my reputation.
How my kids see me.
I think truthfully it's like for me I know that sucks.
I have to constantly put that kid, 19-year-old kid
who gets diagnosed 50 years out in front of me.
- I mean there's nothing stopping you
from throwing in the towel if you wanted.
- I agree.
- Is that what you wanna do?
[ominous atmosphere music]
- Should we roll?
- [Cameraman] Rolling, yeah.
- Hello and welcome to MSHope.com,
a free resource of information for people affected by MS.
I have created this new video to address
why I believe the MS Society of Canada
needs major change to better help people
like me and others with multiple sclerosis.
I do not believe people give to the
MS Society of Canada to hire expensive
lawyers to threaten people with MS.
How am I doing?
- [Cameraman] It's good.
- It's okay?
- [Crew Member] You kinda rush depending on who you cover.
- Okay, we'll do another take.
This is the MS Society of Canada.
This is a society that was created for people with MS.
To defend us, to represent us, and to find us a cure.
Given that only 16% of their revenues are
spent on researching a cure for MS,
I question who the society is truly for.
- A Calgary man diagnosed with MS is speaking out tonight.
He's accusing the MS Society of Canada of
not doing enough to fight the disease.
- [Reporter] He posted a video on his website pointing
a finger at the MS Society of Canada's practices.
Embry says from 2010 to 2013, of the 211 million
in revenue, the MS Society of Canada
spent just 32 million on research.
Only 16 cents of every dollar donated.
- [Angela] Well in the first half of the hour
of course I was talking with Matt Embry and he
was talking about how he has dealt with his MS and
I have received a number of texts and e-mails,
thank you very much, but also Matt Embry
was very critical of the MS Society
and where the dollars go, so I have
invited Darrel Gregory, he's the
Director, MS Society of Calgary,
to join me, to give me a little
bit of details here, hello Darrel.
- [Darrel] Hello, Angela.
- [Angela] Is Matt Embry correct when
he looked at the Canada Revenue Agency
reportings and found that 16% of every dollar,
that's all that had gone to research?
- [Darrel] Well no, he's not correct actually.
Matt paints an incomplete picture of our
research investment and our fundraising.
It doesn't take into consideration the
research funding that we invest through the
Multiple Sclerosis Scientific Research Foundation.
- [Angela] So what percentage then, with those
new figures, would be going towards research?
- Good question, good.
- [Darrel] I don't have an actual percentage Angela,
and I could get that for you, but I just
don't have it with me now, but I can tell you,
for example if we break it down to Calgary,
if we wanna talk about salaries as well, last year in
Calgary our chapter contributed $585,000 to research.
- [Angela] So what was that percentage
of your overall budget or donations?
- [Darrel] Our budget in 2014 was about...
Well to tell you the truth Angela I'd
have to dig that up, I don't have
our budget for 2014 right in front of me.
- They don't fucking know.
- [Angela] It's unfortunate Darrel only because
I think you knew I was going to talk to you
about his criticism, about where the
money goes, and not enough goes to research.
I don't mean to put you on the spot,
but I thought you would have those numbers.
- [Darrel] Well I do have the overall numbers
for research and services, but I don't have
the overall budget of 2014 right in front of me.
- [Angela] How much goes to actual salaries and programs.
Yeah, it's unfortunate because my producer knew
this is what I wanted to ask him, so he just
had the researching numbers and
I would like to get more than that.
Why do you say that it's research,
but we're giving it to another foundation?
That's when people become very cynical
of big, charitable organizations.
I'll throw it out there again though,
7:30 tonight, free conference, Coast Plaza Hotel,
MSHope.com/tour, or you can call a number,
and don't worry about writing it
down, just go to our web page.
- And so it was a big commitment for you to do this.
Then you started to wonder well the
MS Society's supposed to be there to support me.
Have you ever had the opportunity to speak
with them and have them say to you why
they don't support that, or why they don't--
- No.
- They don't wanna talk to you.
- No.
- Okay.
- And this has always been the biggest question.
I'm always curious why they haven't called me
to understand why someone with MS is
doing so well and getting vocal.
- [Host] Anybody who is still mingling,
we're gonna give you a moment here to settle.
I'm sure a lot of people in this room
are familiar with Ashton Embry and Matt Embry
and the work they've done for 20 years,
I think though this is the first time
they've really come together to share their story.
If you know anything about their story,
you know it's a very powerful story
and hopefully an inspirational story.
Matt's gonna speak first and then
his dad is gonna follow up with some
of the science behind what they've developed
over the years and what they hope works
for others, and so maybe we could just ask,
we'll do the questions after both people speak please.
- Hello everybody.
I am so thankful for absolutely everyone
for so much of the support that has come to me.
Tonight is about hope, tonight is about
learning about strategies, it's about
changing your lifestyle, and you making the decisions.
With this being the opening night, it's very very special.
But I'm not gonna cry, I'm only gonna laugh,
and we're gonna have a good time tonight and
we're gonna get some MS hope onboard, all right?
[applause]
- So I'm gonna talk about important
strategies to help keep MS well controlled.
This is information you're not gonna get from
your neurologist and your friendly MS Society.
- I was diagnosed 12 years ago and
my doctor and my neuro said that I
would be in a wheelchair in five years
if I didn't start on the drug therapy.
I changed my diet.
- I found, was recommended those diets,
so I went and researched it and I've
been doing lots of Googling ever since
and found all sorts of things.
When I bring this up to my physical
therapist or my neurologist I was met
with some dissatisfactory answers.
- I fired four neurologists because they
all tell me to eat from the four food groups.
People in my farming community between
the ages of 30 and 50, we are in wheelchairs,
we are blind, we are in nursing homes.
And that's not me.
- I agree, you've gotta almost have a protest.
I don't know how--
- You know what, that's a good question.
I will post, in the next two days,
on my Facebook who you have to write.
Two days.
[applause]
- Good idea.
- So thank you very much for coming
and for supporting us for all the years,
we hope that this really was some great
information for you and wish you all the best.
[applause]
- You have to show people, to convince people with
MS to do it, you have to show people who are on
the dot like you who are the picture of good health.
You just have to say this is what you
could be like, you could be brimming with
good health and having a happy marriage
and family and work life and everything
you hope to get out of life, but you've
got to stick to it because if you don't you
do not want to see yourself go down that road.
- So mostly my diet consists of fresh fruits,
fresh vegetables, lean meats, and fish.
- I was diagnosed just at the end of March this past year.
I had CCSVI, I've been symptom-free for 11 years now.
- If you get adequate vitamin D from
birth onward and maintain a good
vitamin D, the chances of getting MS are almost zero.
- Posted a photo yesterday of the event.
Getting a ton of likes.
You did great last night, Matt and Ashton Embry,
after several attempts to get on the diet
I'm ready to do it now, I've been inspired.
Thank you guys.
Someone just posted that right now.
Boom.
I have so many stories in my inbox.
15 years remission on the diet.
20 years.
No drugs.
- [Ashton] The people on the drugs got to the
same disability level after 15 years
as the people who are not on the drugs.
- I think tonight is a team.
Everybody, we have to focus on
finding the secondary stories.
This is about different people who need Hope.
Totally different tone that way.
- I got multiple sclerosis for the last 35 years.
I never took any medication.
I just deal with diet all my life.
- I've been vigilant and here we are.
It's been 15 years since diagnosis.
- Everything's gotta go.
Milk, yogurt, cheese, ice cream, everything.
All foods that contain gluten.
- I feel so much better.
It's been three years now, just the gluten free.
- By controlling your physical being,
exercising, by controlling what you put in
your mouth, now you're in control of the disease.
[applause]
I'm just a guy who's diagnosed with MS
and has implemented different types of
strategies that have worked for me and have
worked for hundreds of people around the planet.
This has truly become a global
issue and a global conversation.
[phone rings]
- [Answering Machine] [mumbles] you've reached
Owen Charters of the MS Society of Canada.
Please leave Owen a message.
[machine dings]
- Hi Owen, it's Matt Embry calling around,
I believe it's 11:30 your time, I'm just calling
to invite you to a speaking engagement
I'm gonna have in Toronto on September 29th.
It's at 7:30 at the Westin
Prince Hotel, 900 York Mills Road.
More information can be found at MSHope.com/tour
and I really hope you can make it
and learn about my story of hope.
Thanks Owen, have a great day.
So do you enjoy it more now that you're out here?
- Oh yeah, absolutely.
I built this whole thing, right to the road.
- [Matt] Really?
- By myself, yup.
Took a lot of time, but there's some nice sunflowers here.
What I tried to do, some people have noticed it,
it's got a slight different construction,
I was trying to make the post
like one of those inukshuk things.
- Oh right, yeah, I see it. - That's the idea of this.
- [Matt] I can see it.
- For me, one of the chronic dilemmas
has been how much to say and when.
I know lots of things that you'd have to take some
anti-nauseants after because it's so distasteful.
[dramatic atmosphere music]
How much higher can the stakes be than this?
I mean billions and billions of dollars and
yet the system is set up in such a way
that it can be corrupted easily.
It's child's play to corrupt the system now.
Nobody's standing up and saying what they should've said.
- That's good.
So we got half an hour boys,
we wanna be rolling by 3 o'clock.
- I watched this whole story from the very beginning.
I was one of the investigators that was
contacted at the very beginning when
the Interferon trial was planned in 1986, '87,
and I was a principal investigator of the
Serono study with Rebif, I basically wrote
the paper for the first Interferon study.
I fell out of sync with things when
I couldn't get the pharmaceutical industry
to do the studies that were really needed
which is looking at longterm outcomes
where you reached a point where something
really important was happening like
the development of progressive disease.
We couldn't get them to do it.
I mean I can tell you, a couple have
told me frankly, why would we do this?
We're selling lots of drugs, we're making lots of money.
Doing that study can only be bad for us.
If it shows that it does work, then we'll
be right where we are right now.
If we show that it doesn't work,
we've lost the whole ballgame.
- People accuse me of being against pharmaceuticals,
but this is not true, if there was a drug
that convincingly demonstrates a
significantly slow longterm progression,
I would probably take it, but I haven't seen it.
- There's almost no evidence that any of
these drugs make a difference in the longterm.
What they do very cleverly is leave
the impression that it's going to make a
difference in the long run without actually saying so.
That's where the controversy began because
when pressure was put on them, 20, 25 years ago,
to carry out the studies and make them longer and reach
harder outcomes, let's say time to needing a cane to walk.
The Food and Drug Administration were the only
ones that had the power to enforce this.
All they had to do was say okay, you don't
get the longterm outcome, no approval.
And there's nothing more motivating for
a pharmaceutical company than to tell
them they're gonna have their license
for the drug jerked if they don't comply.
They never did it.
[dramatic atmosphere music]
I'm not happy, and you shouldn't be happy,
and patients shouldn't be happy.
- I wonder why MS patients are injecting
or swallowing MS drugs that may cause
serious side effects, or even death, but have
not been proven to be effective in the long run.
- It's hard for patients to ask those questions.
It's where the physician is intended,
for the most part, to step in, and if
the physician is already compromised
because they're on some major drug company...
Income stream, it sacrifices or
impairs their ability to do this well.
The United States for example, the New York Times
had an article a few years ago about how many
physicians have a financial relationship
with the pharmaceutical industry.
It was over 90% in the United States, over 90%.
- Why do taxpayers around the globe pay
billions of dollars for MS drugs that
have been demonstrated to have no longterm effect?
- You follow the money, you always follow the money
and you find that somebody who is being relied upon
to deliver an objective assessment of whether
or not this drug is showing a useful effect
is also on the take in a big way from
the institution that stands to gain
the most from there being a positive
effect, i.e. the pharmaceutical company, right?
- Get ready, here at the side effects.
Back pain, blood in the urine, burning or
stinging of the skin, continuous uncontrolled
back and forth or rolling eye movements,
decreased sexual desire, difficulty with moving,
ear pain, fast breathing, irritation of
the mouth and tongue, loss of appetite,
menstrual pain or changes, muscle pain,
painful cold sores or blisters on the
lips, nose, eyes, or genitals,
sensation of motion, usually whirling
either oneself or one's surroundings,
speech problems, vision problems.
Jesus.
- [Crew Member] So that's Copaxone.
- It's unbelievable.
- [Crew Member] Here's the other one.
- What are you looking at?
That's bad, man.
Especially if these didn't work.
- [Crew Member] This is Interferon.
- Headache, increased sweating, lack or loss
of strength, nausea, sore throat, stuffy or
runny nose, unusual tiredness or weakness,
vomiting, double vision, seeing double, weight gain.
- [Crew Member] During pregnancy or breastfeeding
- Nah, let's just stop it.
It's too depressing, man.
It's not easy.
- It's making me think.
- I think as far as treatment of these very
expensive medications go, they do have
potentially serious side effects.
I know I wouldn't be taking it myself.
I wouldn't be taking it, I'd rather
take my chances with the natural
course of events rather than introduce
something else which is the risk of
who knows what, and the more new or recent the
drug is, the bigger the who knows what is, right?
'Cause there's just not enough information, so I think
you're perfectly defensible in not taking anything.
The MS Society of Canada, they have never,
ever stuck their oar into this controversy
except if anything to diffuse it or deflate,
you've never heard from the society that
these outcomes weren't being met.
And you should be hearing from the society right?
Or they should at the very least be supporting
people who are prepared to stand up and say this.
- Is anyone from the MS Society of Canada here?
[mumbles]?
Anybody?
No.
- There's health at stake, there's the
interest of poor vulnerable people,
and there is a huge amount of money at stake.
I remember saying to the guy at the FDA
someone will shoot you dead for a parking space.
What'll they do for a billion?
The answer is plenty.
- But now we have to, we're giving
people hard information right?
People didn't like listening about the
MS Society of Canada, people didn't like about
the sponsorship, and now we're like maybe you
don't like what's going on in your life too right?
That's a different view for someone with MS.
I don't know how they're gonna react,
they're either gonna be angry as hell at
me or they're gonna turn on the
societies and the drug companies.
I hope it doesn't come to me, it could come to me.
The number of MSers in wheelchairs,
walkers, and canes has not declined.
So what is going on here?
Because I am not seeing any convincing
scientific evidence that any drug
has a notable effect on the longterm
progression of multiple sclerosis.
- We did it, man.
[dramatic atmosphere music]
- They're not gonna let you keep saying
what you're saying without trying to squash you.
If you're right, and you show them that
you're right and you show the world that
there's other ways of taking care of this without
medications and this whole thing has been
smoke and mirrors all these years, you're an enemy.
I mean that's just how it is.
[clock ticking]
When Arnold Schwarzenegger gave me
this lifetime achievement award, that was
the exclamation point for me.
It showed me that the fitness world
is listening, and all these young guys
that are healthy are looking to me and
saying if this guy can do it at his age,
with MS, we can do this and we're healthy.
Am I doing the right thing?
For me, yes.
I'm the founder of the MS Fitness Challenge
which is a charity to help people with
MS nationwide, and soon worldwide, to get
connected with trainers and to be able to
conquer the disease through fitness and health.
I've got people with MS from the UK,
from Canada, from Australia, from even
places like Slovakia, that are saying
could you bring the MS Fitness Challenge here.
Well the MS Society has branches all over.
Why aren't they embracing what we're doing
to say okay, well we're doing research,
you're doing fitness, so let's merge
so that we can help you to reach those people,
no, instead they're saying you're competition.
I mean where's the heart to help people with MS?
I don't take meds, but I'm not a doctor,
so I don't tell anybody not to take meds,
I mean that's stupid, you can't go around
telling people don't take your medication
and just do what I'm doing, but over this
time the symptoms are still there.
This side is numb, you could stab
me in this arm, I don't feel it.
This leg still drags, I mean I get
in and out of the leg press, I put
a thousand pounds on and leg press it
and then crawl out, so I still have all
the symptoms, and I eat unbelievably well,
I mean I don't eat junk, I don't eat
gluten, I eat really really clean.
My symptoms have progressively gotten worse.
- Right, right.
- And this in here is my stash.
- [Matt] So what is all this?
- These are different types of proteins,
some are vegetable based, there's others
that I take that are whey based.
Every day this is what I take in
addition to eating all my healthy foods.
- Can I judge it right now?
- Oh yeah, you gotta tell me.
They're working on one right now
that has nothing artificial in it.
I mean without this stuff I couldn't
get through my workouts, I mean
this stuff keeps my energy level,
gets me all the protein I need,
gets all my aminos in, the PCAAs.
Without it I wouldn't be able to
get through this, I wouldn't grow.
I mean if you look at the protein,
this is, I think this is plant based.
- [Matt] Yeah, yeah.
- It's got stevia in it.
- Right, right, let's just cut for a second.
You gotta get off this one.
I'll show you just how it changes your disease activity.
- [David] Really?
- [Matt] It increases it.
- [David] Wow, 'cause I take whey every day.
- [Matt] Don't ever touch it again.
It's poison to you.
- [David] Really?
- The one food you can't have is any type of milk.
I'll send you--
- [Mrs. Lyons] Any type of what?
- Milk.
- Dairy, anything, whey...
This starts the process.
I'll send you the--
- Yeah, send me some stuff, I wanna read about it.
- It's unbelievable to me that we know
this increases your disease activity.
- Nobody says anything.
- No.
[church bell rings]
Tomorrow we're gonna meet Judy Graham.
It's a big deal, she's a huge mentor,
she's the godmother of MS diet,
she's the first person who punched
out the book on how diet can change
your ways and she's been connected
to our family the whole ride up and my dad
wrote for her magazine that she put out for years.
Huge inspiration to me.
If there's one person on the planet who's been
the inspiration for this whole thing, it's Judy.
The fact she's here and the fact
we can actually meet her is amazing.
I just really hope she's okay, right?
How she is is gonna be how I think I'm gonna end up.
It's been 20 years, man, since I read her book,
so I'm still good, but I want her to be good too.
[dramatic piano music]
[doorbell rings]
- Hi.
- Hi, how are you?
- Oh you've got the camera running, okay.
- The old trick. Hi, nice to see you.
- You're the handsomest man to come into my flat.
[laughter]
- Thank you.
They're coming in. Hi there.
Yeah, so I created a website that,
it's got four videos on it that
tells people how to diet, exercise.
- Fabulous.
- In downloadable PDFs.
- Oh boy, you really are the next generation.
It's so nice, it's a feeling of being a relay runner.
And although I haven't handed any baton to you,
it's feeling a bit like that because some
of the thing you're saying are sounding
a little bit familiar, so I still feel that people
like you and I are swimming against the tide.
The tide is mainstream, the tide is give us a magic pill.
Let science solve this for us.
Doing a whole lifestyle thing is bloody hard work.
- And how are you feeling?
- Well I have got worse, but after
45 years I should be dead and I'm not.
That's really all I can say, but for distances
I can't manage without some kind of mobility scooter,
or someone's pushing me up a wheelchair.
I'm sorry that it's come to that.
It's so easy to break the diet.
It's so tempting to break the diet, 'cause it's a hard diet.
It's so tempting to be lazy and
not do some exercise every day.
My unhappy conclusion is that MS deteriorates eventually.
But I can't say that with certainly
if somebody is very, very strict.
'Cause I haven't been very very
strict, I wish I had, but I haven't.
In my own case, I've gotten worse.
But well enough to walk around.
I mean you were really hoping I
wouldn't say that, that I've got worse.
What have I said, Matt?
- Sorry.
- [Judy] What have I said that's upset you?
- I think you're probably right.
You're right, that it will have the upper hand in the end.
- But not with you, I mean I have been remiss,
I have not been as strict as you are, as strict as I was.
I've wavered, I've been very human, I've been...
A weak human being about this.
One part of me says stick to the diet.
It's the eternal struggle that goes on,
stick to it, don't stick to it, stick to it,
don't stick to it, but you wouldn't cry just to see me now.
I don't think if somebody newly diagnosed
met me, coming up to 69, diagnosed in
1974, but symptoms going back to the 1960s,
you wouldn't cry, or they wouldn't cry,
if they saw me running around in
my flat leading a pretty normal life.
You wouldn't would you?
- No.
Given my time again I would be very strict,
but in my own particular case, with the
human weakness of not sticking to it,
I have gotten worse than I was.
I wish that wasn't the case.
I would really love to be able to
say to you if you do all these things
it will just vanish into thin air.
Maybe that's true if you're very strict.
Maybe that is true if you're very strict,
and for someone as young as you I would
say stick to it, stick to it, stick to it.
But, you know, maybe one needs the terror,
'cause it's more than scared isn't it?
It's terror.
It is a terrifying illness and you
see people who have lost it and
are gaga and their voices slurred and
they can't pick things up and all that.
In a way, you need the terror to
keep you on the diet and exercise regime
because if it wasn't that bad why
would you be motivated to do it?
It's the terror, I don't wanna be like that.
I better do something about it now and stick to it.
- My torso just can't hold me up.
I can walk very short distances using two
walking sticks, otherwise the tilt-recline wheelchair.
Are cognitive problems coming next?
Will I be having to face an early dementia?
I'm going downhill.
Aggressive treatment does not stop that slide.
This is an unpredictable disease,
functions once lost are generally gone forever.
[clock ticking]
In 2002 my Cleveland Clinic neurologist, she said
I want you to check out this work by Dr. Ashton Embry.
It's a very interesting story, helping his
son out with diet, and she e-mailed
the webpage to Direct-MS charity.
It was his website that got me started on my food journey.
- So we didn't have quite as much kale as usual.
But we've got some in here.
Here we go.
So we come out every morning and take
out a bunch of kale, add it to our smoothies
or we'll use it for cooked greens.
- I got home, I read through all those papers.
I thought well this is pretty interesting.
So I went back to the internet,
started searching, and eventually,
it took me a couple months, I now had a list
of foods that I should be stressing in my diet.
I have these lists of foods which I now
have organized into the green sulfur color.
I started this December 26th, 2007.
The month after that I'm driving
my wheelchair over to the staffing office,
I take a cane over, and I'm able to
walk between exam rooms to see the patients.
And I wasn't exhausted.
I also had to note that in that month
my brain fog was just melting away.
The month after that, I don't even need a cane.
Three months later I can walk, even uphill, without a cane.
Hadn't done that in years.
I don't really know what to think of all this.
I don't know if this is temporary,
I don't know if this is permanent, but I know
that recovery's not possible but I'm walking around.
Then probably three weeks later, I decide it's a
beautiful day and I wonder if I could bike again.
Put on my helmet, lay the bike down,
step over it, then pull it back up, so okay,
and I push off, I'm a little wobbly at first, and then...
Zack's cheering, Zebby's cheering,
Jackie's crying, and we pedal around the block.
That's when I know that nobody knows what might happen.
This really is the miraculous moment when
I realized that recovery is possible in that
if I stay on this path, diet and lifestyle,
who knows what might happen in another five or 10 years.
I might get better, very close to normal, or not.
But the prescription that it's only downhill is not correct.
Okay.
- We're gonna hit a lot of people with this one.
- This'll be very good.
- Yeah, I think so.
- [Terry] Creating health is about diet and lifestyle.
It's not about drugs.
It's about diet and lifestyle.
That's what got us unhealthy and it really
is what can restore our health and vitality.
- [Cameraman] You're here alone.
- Hmm?
- [Cameraman] You're here alone.
- Yeah, I know.
- [Cameraman] So just while they're
setting up, talk a bit about this.
- Yeah, I mean this is the set
that was used in Field of Dreams.
I shot a film here about eight years ago about
W.P. Kinsella and absolutely fell in love with the place.
This would be arguably my favorite place on the planet.
It's pretty incredible, huh?
- It really is, wow.
- [Matt] The way they preserved it and everything.
- This is amazing, 'cause it's 20-plus years old now.
- Did you see, there's even the
mailbox there you put the 20 bucks in.
- Oh I see, so it's a donation 'cause I was
surprised when it said this is free, what?
What a fantastic attraction and it's free?
How can that be?
- It's just like the movie.
On the weekends you'll see that whole strip there,
all the cars will come down there, up in there.
- [Ashton] Of course, yeah yeah yeah yeah.
- They put their 20 bucks in, everybody plays catch.
- Wow, that's something else.
They've done it well.
They've really done it well, it's good to see,
if you're gonna do something like this, do it well.
And they have.
It's very neat.
- All right, let's do it.
- People are always shocked when I tell them it
was from a novel by a Canadian author from Alberta.
- Right.
I mean this is a story about a father and his son
and keep holding onto a dream, and I think
the most relevant thing for what we're doing is
what you said earlier, build it and they will come.
That's what we're trying to do with MS Hope.
We're gonna build it, and the patients
and the supporters and the people who
actually wanna end this disease are gonna come.
[dramatic orchestral music]