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.

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