I should be using a walker.
Do you want it? It's right here.
No, that's a cane.
I had absolutely no idea what it was. It was very scary because i did my own research before,
so I was very nervous and scared and i had a lot of fear regarding the future. The first
things that went in my mind were 'Is this going to get worse? Well my future is going to be...'
Just a lot of uncertainty with my life.
Florence Roudbarani is 28 years old. She was diagnosed with multiple sclerosis in 2013,
a disease that has dramatically changed her life. Multiple sclerosis, or MS,
is a disease that affects the central nervous system. It causes damage to nerve cells in the
brain and spinal cord. One in every 385 Canadians is estimated to have MS, the highest rate in the
world. For most people like Florence, the disease is not fatal. However, there is currently no cure.
So, before I got diagnosed, I actually just finished my undergrad at McMaster University.
Life was good, I was very happy, I went to Florida, I traveled, you know, I would go
out with friends on the weekend, we'd go out dancing. I did a lot of volunteer work as well
with a group called 'Life is Beautiful' where they would take us to Dominican Republic and
we would build a house there with a group of 18 people.
I have to admit now, it was it was perfect. I had a perfect past before diagnosis.
For Florence and others living with the disease, physical symptoms are just one part of the battle.
They must also confront the reality that their lives will never be the same.
This plunges many people with MS into depression.
Tay Hart is a clinical psychologist and psychology professor at Ryerson University.
She has been working in MS for nearly 20 years.
People who have MS can get depressed because they now have had their lives turned upside down by
something they never thought was going to happen to them and certainly not at this young age.
So I think there's the depression from adjusting to a new reality. But the other thing that many
people don't know is that MS itself, the physical changes, the demyelination
can cause depression symptoms.
Typically, nerve impulses travel smoothly to and from the brain. When demyelination
occurs the signals slow down, or stop altogether, affecting motor skills and how the body functions.
After I got diagnosed with MS, I felt like mentally, I wasn't in a good place. I was
very depressed. I kept on thinking about the uncertainty of my future,
you know, then I started thinking more about my symptoms. Would they go away?
Would they stay? Would it get worse? I needed some distraction. I would go out with friends still but
my mind was still in the fact that I was sick and there was no cure for it.
Florence is still learning how to cope with her diagnosis. Recently,
she met a woman who was diagnosed with MS in 1997.
For Michelle McRae, the diagnosis brought on a different wave of emotions,
some of which, she is still dealing with today.
The day was terrible. It was probably the worst day of my life. I was absolutely beside myself.
I did not know what MS was at the time, nor did my family not know what multiple sclerosis
was. It was very very new. I thought I was going to become disabled, I didn't know when
I was going to become disabled. So that the unknown was very very very frightening for me
so i was very depressed. Very depressed. I contemplated suicide, I felt very angry.
Very, very angry and I was very upset. I was mad. I was mad at the world and I still get
mad because I'm still angry about it. I just feel robbed, like a huge chunk of my life was robbed.
Typically, I think one of the ways that works really well using cognitive behavioral therapy,
one of the biggest techniques, is dealing with the catastrophizing that happens. So,
people have an image and a nightmare in their head about what their life is going to look
like and typically we use three different kinds of strategies. One is cognitive restructuring,
so if the thought is inaccurate, how do we churn that thought to make it more accurate?
How do we work with that? The second piece is, maybe the thought is completely accurate
but we have to deal with different kinds of problem solving. Like, you know,
if your partner broke up with you and that is the truth, so how are you going to manage that
problem, because of the MS. Then the third thing that I think is useful that is not MS unique,
but the case with any kind of chronic illness, is using acceptance-based approaches. So, sometimes
things are just true like you can't walk, you do need a walker you do have optic neuritis.
This isn't a thinking problem and this may not even be a problem to solve, but how do you live
with these symptoms? How do you accept that this is your new reality? So to me, those are three
of the hallmark ways that we help people cope with MS depression.
It totally put a strain on my relationship because when I was first diagnosed with MS,
he came with me and I don't know how we got home from the doctors because I was crying,
my mom was crying, my niece was crying, he was crying, and he stayed with me until four o'clock
in the morning then he went home. At that time, when he went home, is when I actually
contemplated like taking a knife and killing myself but I didn't because I wouldn't do that
to my parents and I wasn't really, I have to give it a shot, like I have to figure it out.
So I pushed him away and I didn't see him for many times. I gave back my engagement ring even though
I wanted to keep it because it was a really nice ring. But I gave back my engagement ring
and then I just didn't answer his calls. I didn't go see him, so was my dad who actually
came up to the bedroom and in Italian he said, basically said like in English translation,
"If you let him go, that will cripple you faster than this disease will." So he kind
of got mad at me and I respected that and I'm like, okay. We continued to get married.
MS related fatigue is probably the biggest, it's the most common MS symptom but it is also the most
problematic MS symptom. Poor fatigue management, which is something I help people with a lot,
fatigue management is critical. So if anything, I see people push themselves too much,
do too much, and they feel like if they give if they give in to their limitations, they're giving
up on themselves. But the truth is is that they're exhausting themselves and so they're actually able
to do less and then they start feeling worse about that, whereas pacing is a really, really big deal.
Just to know that the things I used to be able to do that I can't do,
it's really difficult to deal with that. I would say the number one symptom is chronic fatigue.
You know, I'll describe it as you wake up in the morning with a full eight or nine
hours of sleep and you feel like you have not slept.
You wake up, you have zero energy. Just simple things such as taking a shower will literally take
all of your energy and when I come from a shower, I have to like, rest for an hour, because I'm so
tired. So functionally, it's not really helping me. Even with regards to cooking for example,
it takes a lot of energy for me to cook and cut, you know prepare meals and cut vegetable.
So these things have definitely affected– the chronic fatigue has definitely affected my life.
Florence's physical symptoms require several changes to her day-to-day life. In 2005, the
Ontario government announced the Accessibility for Ontarians with Disabilities Act. The Act promises
to remove barriers to accessibility in areas such as employment, transportation, and the design of
public spaces by 2025. Currently, the federal and provincial governments offer disability and
drug benefits. But for things not covered by government assistance, like home renovations,
non-profit organizations, such as the March of Dimes, fill the gap.
My balance is really bad right now. I have to hold a wall or something because I feel
if I don't hold it, I'm gonna lose my balance and fall. So this is the washroom and this is the tub
as you can see there's a stool. It's quite difficult for me to get into the tub
because one of my legs it's really difficult to bend and as you can see there's no grab
bars or anything. Now, I've been trying to look at different funding sources to help with like making
it new or renovating and making this washroom and shower more accessible. I reached out to the March
of Dimes and they told me that they can fund up to fifteen thousand dollars for the renovation.
So in about two weeks, we're gonna go ahead and we're gonna make a barrier-free walk-in shower.
I have a lot of spasticity and spasticity is basically
the faster you stretch my muscles, the more resistance it's going to give.
I have extremely stiff legs, to a point where sometimes, it's so hard to just even get into a
car because my legs are so stiff, I can't even bend it and sometimes, I need my sisters or
my friends to help bend my legs to get into the car. I'm still driving but with hand controls.
Everything's changed.
I went to a rehab center so they could teach me and it took about seven hours to actually
be approved to drive with hand. controls
Definitely I find that driving, I'm able to maintain my independence. Especially
when I need to go grocery shopping or just anywhere to my friend's house.
If I were to take public transit, it'd be a lot of work for me to get
to and out from the bus and TTC and etc. Yeah so right now there's really no treatment
really to help with the MS but there are a lot of medications that you can take to
manage the symptoms such as you know Baclofen for the spasticity.
I definitely need depression medication because depression is a secondary symptom i have.
The MS Society of Canada is a voluntary organization that aims to enhance the
quality of life for people with MS. It has chapters across the country,
including Toronto and surrounding areas.
Peter Basilio has been working for the MS Society since 2006, a year after his
diagnosis. He is frustrated with the response from municipal governments about accessibility.
I tell them "Why why can't you build the sidewalks appropriate that can fit the wheelchairs?
Or when you do a ramp for accessible parking, why is the ramp six parking spots away from
where where the person's parking? Why do I have to get off the freaking bus,
to get onto another bus and to get back on the first bus to get to my destination?"
They said "Well, this is the agreement we have with Wheel-Trans." Well no, it's not the
agreement, it's an idiotic agreement. Why don't you get into a wheelchair get off in a well-driven
vehicle, to get onto another vehicle, to get up to your spot, which could take two or three hours,
to get back onto the original bus. It just doesn't make sense
but they expect us to do that in a wheelchair or in the middle of winter time.
For most people, these few steps are no big deal. An out of service elevator or
escalator is barely an inconvenience. But for some people living with MS,
these are factors that determine where they can and cannot go. We reached out to eight
members of the provincial Parliament about accessibility. We haven't received a response.
I've gone to even buildings where their elevator was not working or that they
did not have an elevator. Now, I'm right now able to go up the stairs but I know other people
again with wheelchairs. How are they supposed to go all the way up to the 15th floor, for example?
It's just physically not possible. There's a lot of accessibility issues that we still face.
when my friends call me to tell me let's go out to a restaurant or something like that,
there's a lot of things that come into play. My fatigue or you know,
is there an accessible washroom? Would I have to go up the stairs to get to where I need to go? So
all these planning things really affect my one who wanting to go out and so sometimes, I'm just like,
it's so much easier just to stay home watch a movie and not deal with all that planning.
To be honest, I don't like crowded areas. It kind of gives me a little bit anxiety because I feel,
you know, I look at other people and I compare myself to others and I see other young people
walking around laughing and I'm just like "I wish i could be like that."
What we're trying to do, other than speak up for, we have to get rid of the ignorance
of those without a disability or without an inconvenience.
That is the most difficult of teaching an ignorant person to think common sense, to think logically.
The fact that Canada has the number one, the highest rate of MS in the world
makes me feel pretty bad because if we are a country with a lot of people developing these
disabilities, there shouldn't be any accessibility issues for people going out into the community.
Even though progress has been made,
there are still significant steps to take to help people with MS lead a normal life.
Until that day, for Florence, Michelle and Peter, the struggle with multiple sclerosis continues.
For the Ryerson documentary unit, I'm Sara Hussein.