NOVA

JASON DASILVA

March 2020. During the height of the pandemic, I felt frozen. Welcome back!

JASON

I did all of my meetings and doctor's appointments online. So what's it like out in the hospital?

JONATHAN HOWARD (on phone)

At the moment, I think Bellevue is doing okay.

JASON

Yeah, it was convenient, but it was lonely.

Long story short

I spent my days staring out the window, waiting for my daily roll in the park. The never-ending isolation left me with an infinite amount of time for reflection. I began to think about my own particular situation and how I got here. Now, this isn't a story about the pandemic. It is a story about a mysterious disease, and my quest to find out why I got it. (camera flash pops) In 2005, I was 26 years old, living a full life as an artist and filmmaker, working on several documentary films. I noticed that I was having trouble walking. I went to my doctor to get it checked out. I was diagnosed with primary progressive multiple sclerosis. Multiple. Having several parts.

Sclerosis

the abnormal hardening of body tissues. In MS, nerve damage disrupts communication between the brain and the body. A healthy person's body attacks threatening germs, but the immune system of somebody with MS is confused, and attacks the protective sheath, known as myelin, of the nerves in the brain and spinal cord. This makes it harder and harder for the brain to tell the body what to do. Multiple sclerosis causes many different symptoms, including vision loss, pain, fatigue, and impaired coordination. I have a rare subtype of MS called primary progressive multiple sclerosis. MS symptoms like fatigue, muscle spasms, stiffness, and weakness typically come and go, but with PPMS, it's just a slow and steady decline. The doctors told me that in seven years, I may be in a wheelchair. There I was, in the prime of my life, but my body kept getting worse.

I tried everything to stop it

going to the gym, acupuncture, numerous treatments. (chanting)

JASON

But I was unable to avoid the inevitable. Depression, confusion, a complete loss of control swirled about me. This past year, seeing the world trying to make sense of chaos, the feeling of lack of control about my future returned in full force. I needed some kind of answers. So I decided to go backwards to look for possible factors that may have caused me to get PPMS. (music playing in reverse) Let's start where MS was first discovered. Multiple sclerosis was described as a distinct disease in 1868 in a series of lectures by French scientist Jean-Martin Charcot. This tricky disease evaded treatment until 1951, when the steroid cortisone was used to treat flare-ups. In 2001, magnetic resonance imaging, known as MRI, was included in the McDonald criteria for diagnosing MS. While MRIs can help detect lesions in areas like the brain and spinal cord, they are only part of a diagnosis. Today, MS can be treated with various medications, physical therapies, and injections, but there is still no cure. When looking at the probability of getting MS, on paper, my chances should be slim to none. In the United States, the rate of MS is approximately one case per 333 people. Only 15% of those are primary progressive MS. That's one case per 2,222 people. So why me? My investigation led me through a list of potential risk factors. The genetic risk factors of MS are complicated. Genome-wide studies have revealed over 200 genetic variants associated with an increased risk of MS. Some studies have also shown that having close family members with MS increases your risk. Did I have a genetic predisposition to MS? If nothing else, I can definitely rely on my family to give me some clarity. Leigh, do you know of anybody in our family throughout the generations that has had MS? Uh, I think it's just you, man, unfortunately. (chuckles) You're the first person in our family that, that got it. Um, we didn't inquire. But we, no, I don't know of anybody, unless there are relatives that we don't keep in touch with. I've asked a lot of people, family members, and nobody seems to give me a positive response, so the answer is no. Not, not this side, no-- we, we're the heart disease people and cholesterol, 'cause we love the cream and the, and the sugar, and the alcohol, and stuff like that. I mean, I personally don't know. From, from my knowledge, there's no one in our family. But my knowledge only goes really up to Mama, Mama and Papa. The grandparents, you know? If you wanted to go further back than that, I think if you ask my mom, if she doesn't know, she'll point you to who does know. Among Mama's siblings, I don't know anyone who has any neurological problems, but going back to her mother, she was born in Russia and got married, and left Russia in, I think, 1920.

MARUSHKA SEQUEIRA-PALHA

Mama Lucia was very healthy. I don't think that even her parents had any, you know, such thing. However, her mother was German Jew. I don't know on the Jewish side if they had anything, or on Grandpapa Victor's side, but as far as I know, they were very healthy.

JASON (voiceover)

Turns out, to my knowledge, I don't have anyone with MS in my family. But I did learn that I have Russian and German heritage. Who knew? By investigating these people where there's multiple family members with MS, we might learn about how MS works. And, and that's been the, one of the biggest problems with progressive MS-- we don't know why people progress.

JASON

Most people experience their first symptoms between ages 20 and 40, but the primary progressive subtype that I have often shows up about ten years later. I was diagnosed when I was only 26. MS classically occurs in young adults between the ages of 20 to 40. It can definitely occur younger than that, usually in teenagers. I mean, it's unusual that it occurs in sort of true children, you know, under the age of ten, but it can happen. But the vast majority of cases are between the ages of 20 to 40 or so. Hi, Lisa, I got a question. Do you see more women or men with MS? There are definitely more female patients than male. The ratio is two to three times more females. Some research indicates it's as much as four times as much.

JASON (voiceover)

This could be related to a number of factors, such as different levels of sex hormones, or differences in body fat percentage and distribution, which relate to differences in overall inflammation. However, the reason for this is still unknown. Whatever the reason may be, I'm a male. I was only 25% to 50% as likely to get MS as a female. Yeah, quite a bit more female. But males tend to, tend to be more, become more disabled.

JASON

In general, people living beyond the 40-degree mark north or south of the Equator are more likely to develop MS than those living nearer the Equator. Besides my newfound Russian heritage, my family roots are in Goa in Southern India. (music playing, people talking in background) MS can strike people of any ancestry, but it's relatively rare in people of Asian descent. (music playing) Here's the kicker. I grew up in South Florida, well under the 40-degree mark.

VERNON

Hey, what's that? I don't know, I can't identify it. It looks like a Jason.

YOUNG JASON

La-cuckoo, la-cuckoo. La-cuckoo, la-cuckoo, la-cuckoo, la! (laughs)

JASON (voiceover)

Florida was a magical place growing up. (giggles) Hello, South Florida. I loved the nature and wildlife. (people talking in background) Playing baseball.

VERNON

Give 'im some of that mustard!

JASON (voiceover)

Being around family and adventures with friends.

VERNON

Yes, I, I think we're lost. Yes, let's go. (giggles)

JASON (voiceover)

And that's where I really started falling in love with the camera.

YOUNG JASON

Who's up first? I'm first. (speaks indistinctly) And I'm outta here! Okay. (kids exclaiming) And I'm the pitcher! We know. And I am the video cameraman! (giggles) (kids exclaim)

JASON (voiceover)

And then it all changed.

VERNON

Okay, Jason, today is Tuesday?

YOUNG JASON

Uh-huh.

VERNON

July 14. Saying goodbye to the plants. (people laugh) Howdy, kids! Are you all ready for the 10,000-kilometer trip?

JASON

My family moved to Vancouver, Canada...

MAN

Skankouver, BC!

JASON

...when I was 14 years old.

MAN

So I gave it all up One fine day Hopped on my Vespa and I just drove away

D'SOUZA

Tennessee River!

YOUNG JASON

T-T-Tennessee!

VERNON

And this is Iowa. Here we are in Sioux Falls. Where are we now, Jason? Uh, South Dakota? Right, and where are we heading now, after this? Which... Grand Canyon? Mount Rushmore! Oh!

BAND

Rudy want to go home To Skankouver Rudy want to go home To Skankouver

D'SOUZA

Oh, Canadian flag! Are we near the border?

YOUNG JASON

"Government of Canada Customs, Immigration."

VERNON

We're here! This is our house. Not much, eh? Or is it?! Ta-da! Okay, this is, I gotta tell... (speaking indistinctly) Okay, yeah, yeah, yeah. Okay. (laughs)

FLOYD WARREN

Turns out that moving from areas of low risk to high risk, especially the younger you are when you move, the greater the risk. Hola. Some studies have looked at different age cutoffs. So some use ten, some use 15, so you're 14, you know, you're right at that sort of in-between stage. It's not that you can't get MS in Miami, but it's certainly much higher in Canada.

VERNON

And this is Vancouver. On a very cloudy day, right, Leigh?

YOUNG LEIGH

Yeah.

JASON (voiceover)

Researchers attribute it to sunlight and the production of vitamin D. If your serum vitamin D levels are particularly low, there is suggestion of an association with possible MS risk. And in South Florida, you... I understand that you would potentially make vitamin D all year round. But in Vancouver, you're not going to. It will only be in the summer months.

VERNON

Hi, Eddie! Passionate Pink! (chuckling)

JASON (voiceover)

So far, I've got nothing definitive. I'm at the point of desperation. So I call my mom for some support. Mom, I have a question. Would you have moved us to Vancouver if you knew I would've got MS? Oh, that's a stupid question. Would I really move from Florida to Vancouver, South Florida to Vancouver, with the knowledge that my oldest son was gonna contract MS and be severely disabled? If I had known that, I wouldn't have. Isn't that a stupid question? Yeah, so, so you can't blame your mom for this one, I don't think. Where people grow up, it does seem to matter for MS, and it's where they spend the first 15 years of their life. So by, by the time you reach, reach age 15, that risk factor is firmly established, and this is one of the things that has been known about MS for, for decades. One of the classic findings is that the further you grow up away from the Equator, the higher the risk of MS. At the age of 17, I was a multidisciplinary artist.

YOUNG JASON

It's actually a portrait of Elvis Costello.

WOMAN

Okay, and over here? This one?

YOUNG JASON

This one represents... Basically, the alien represents imagination.

Mm-hmm. YOUNG JASON

And this represents myself, and my daydreamy attitude towards life and that sort of thing.

JASON (voiceover)

Along with drawing, painting, and everything else, I was an avid photographer. I spent my school days in the darkroom. Handling and breathing those chemicals all day in a poorly ventilated darkroom most likely did not help.

MARC WILKENFELD

We know that some of these chemicals, they are toxic to the nerves and to the brain. It has not been shown, but I think the reason that it has not really been shown is because it hasn't been well studied. (sirens blaring, traffic moving)

JASON (voiceover)

Darkroom solvents weren't the only kind of chemical exposure that I've had. The Twin Towers were attacked just before I arrived in New York City. I joined in the efforts to provide assistance as a disaster relief counselor to the rescue workers and people that lived in the area, right across the street from Ground Zero. Today, research is being done to see if the chemicals and toxicity in the air after the attacks could have a link to different autoimmune disorders. Could this have had a hand in the onset of my MS? We do know that the workers, including yourself, that were downtown were exposed to a variety of toxins that could potentially cause autoimmune disease and neurologic disease. I myself have seen a lot of people with multiple sclerosis. But at this point, from a governmental point of view, they don't think there's enough... evidence. And I've inherited my family's tradition of being on the move. Like my family, I can't sit still. I've been to so many different countries where travel vaccinations are required. Could that have been a factor as to why I got MS? So vaccines are something that have been pretty conclusively not linked to MS. And of course, MS existed well before any of these vaccines existed. Interestingly, there are some vaccines that may reduce your risk of multiple sclerosis. So, no-- if anything, those vaccines may reduce your, have reduced your risk. Well, so much for that. (voiceover): All the variables that I explored are ones that I personally had exposure to. However, on my journey of discovery, I learned of other risk factors. There are a handful of risk factors that we haven't covered yet. Certain things like head trauma in high school, for example, may be linked to multiple sclerosis. Obesity during the childhood years. Now, I've seen your first film, and you were not obese-- you were a skinny little kid, so we can rule that one off. Cigarette smoking may increase the risk.

TREMLETT

You know, if you ever smoked a lot. And then Epstein-Barr virus. Most of us are, are exposed to Epstein-Barr virus in our early childhood. If you're exposed to Epstein-Barr virus slightly later in life, in your adolescence, you can present with mono, or mononucleosis. So it's that delayed exposure that may increase your risk of MS.

JASON

I never had mono, I didn't really smoke, and I was never obese. Yet more things to cross off the list. A number of factors can contribute to a risk of MS. The way I like to think about it is, it's like having an empty bucket, and each of these factors is like a glass of water. Eventually, if you pour enough glasses of water into the bucket, the bucket will overflow. Presumably, this is when your risk of MS is greatest. The feeling is it's a multi-factoral process, probably a combination of environmental, genetic factors. They interact with each other, meaning that exposure to something, whether that's smoking, obesity, the level of sunlight, will probably be relevant in context of your genetic background. I'm confident there will be a cure. And in the interim, they are coming out with better and more efficacious medications. So, that, that gives me a lot of hope. I've been working in this field for about, gosh, 20 to 30 years-- I lose track. And when I started, we had very minimal treatments for relapsing forms of MS and nothing for progressive MS. And nowadays, the treatments we have for relapsing MS are much more effective. And we have something for progressive MS that slows it down a little bit. So I, I am optimistic. I think that patients with MS should not feel guilty for a second that they "did something wrong," or that they did something to deserve the disease, and if only they had done something differently, they wouldn't have gotten sick. Who knows? Maybe, maybe we'll discover one day that there is some behavior that leads to MS and, and we can tell people to avoid it, but we're certainly not there yet. And that's a very important message I think that people should take home. Being diagnosed with MS is oftentimes considered tragic. I always like thinking of my life as seeing the glass half-full. When I was told that I have PPMS and I could be in a wheelchair, I found a way to turn it into something that can help others. By 2008, my ability to walk really began to deteriorate. As I attempted to navigate the world, I discovered many barriers preventing me from doing something as simple as grabbing a coffee or having lunch with friends. So I created AXS Map, a crowd-sourced data-driven digital mapping tool... ...that allows its users to rate and review different venues on their accessibility. Dozens of volunteers roamed the streets of San Francisco today to rate the accessibility of businesses for people with disabilities. There might be a back entrance, but you would be going through the kitchen. Through the kitchen, oh. While nobody's found a cause or a cure for MS, its treatment has made great strides. I get two infusions a year to keep the progression of my disease at bay. When I was diagnosed, I really felt like I lost control of my body. My quest for answers led to no definitive conclusions. I am left feeling frustrated that there's no answer as to why I got MS. Yet also hopeful that my journey is not at its end, and one day, there will be a fuller understanding about why people get multiple sclerosis. But I do know that while we can't control everything that happens to us, we can lean on each other for support.