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Patient Perspectives: Finding the Right Treatment and Advocating for Yourself

The face of MS is changing, and multiple sclerosis patients must be engaged advocates for themselves and others.

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Transcript

00:00
Self-advocacy is not just reactive, but also proactive. [MUSIC PLAYING]
00:10
One of my challenges and goals is to educate the neurological community that the face of MS is changing.
00:17
I think the other side of that is that patient self-advocacy is also extremely important.
00:23
You know, making sure that if you know something is wrong with your body, and you don't get the answers you need, that you're saying, OK.
00:29
Well, I need to go somewhere else to get those answers. So Caroline, tell us a little bit about some examples of self-advocacy that you've seen
00:36
or maybe people that you've worked with, where that has been effective in getting them access to the appropriate treatment.
00:42
I think a big thing for me with people with MS, especially when they're starting to self advocate, is to find out--
00:50
you know, we'll go through what their real issues are, what their goals are and encourage that shared
00:56
decision-making. And that's what's so important. So there's so much misinformation
01:03
that people get confused about, and you really need the expert of the doctors, experts, and physical therapists, of the nurses.
01:12
And tie that all together with what your own personal needs and desires are. Then I think that that--
01:19
to me, that helps that person find that self-advocacy to fight for themselves.
01:25
I totally agree that it's very important to have many members on your team-- neurologist, primary care physician, even, PT, OT,
01:35
everyone and anyone. And it's important that they're all on the same page so that communication between the healthcare team
01:41
is really important. But I think this all stems back to knowing what to advocate for. Especially if you're newly diagnosed,
01:49
it can be hard to understand what you can get help with. So I think part of advocacy is also
01:56
understanding what is out there and what tools you can use or look out for--
02:02
physical therapy being one of them. I think that that's a lot of the issues, too, that we're so focused on treating the patient
02:09
and not educating the patient themselves. But how do we make it known in society that these options are available?
02:16
Be a self advocate, but also advocate for everyone in your same situation. There are so many people, and it's also a cultural thing, OK?
02:23
So some cultures-- they're very reserved. Like, I'm not going to tell anyone because I don't want anyone to feel bad for me or I don't want
02:30
to be a burden on someone else. But that's not what it's about. The more that the education is out there about MS,
02:36
and how it affects multiple groups, what are the options that are out there so that you can live a better life, the better it will

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