Latest / The Scene Projects / Ashley and Elisabeth on FND Warriors, Advocacy, and Building Community

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Ashley and Elisabeth on FND Warriors, Advocacy, and Building Community · The Scene Projects

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  This program is part of the Scene Projects podcast network.
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  Scene Project features interviews with independent musicians, comedians, and artists
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  from across the Midwest.
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  Become part of our community and support local art wherever you are.
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  Well, welcome into a very exciting episode of the scene.
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  I'm your host Bubba Starts, and with me today are Ashley and Elizabeth from FND Warriors and
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  the unraveling FND podcast.
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  Welcome to the show, girls.
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  Thank you.
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  Ladies, I always get in trouble for that when I say girls.
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  I I apologize.
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  All good.
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  Don't don't worry about it.
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  That's okay.
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  I I'm almost 40.
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  I'll take girl any time.
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  Well, that's fair enough.
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  Before we get too far into the episode here, just Ashley, well, I guess we'll start with
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  you.
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  Introduce, introduce yourself a little bit and, you can kinda share about FND Warriors, and
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  then we'll get Elizabeth in there to chime in as well.
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  Sure.
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  So sorry about that.
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  My name is Ashley.
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  I am with FND Warriors.
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  It's a little guest on its way to be a non profit that I started after an issue that arose
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  or started an issue that happened to me when I was at my place of work.
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  A pretty egregious situation.
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  I was in a so basically, I was diagnosed with a condition called functional neurological
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  disorder.
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  I was diagnosed with that August 30.
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  But I probably was I suffered from it for nearly a decade prior to it before that.
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  It's an invisible illness.
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  It's an illness that you suffer from for a very long time before you actually get formally
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  diagnosed with.
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  And it's also something that's very hard to get diagnosed because there's very few doctors that
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  are that specialize in the condition as well.
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  So it's hard to come across doctor that actually knows anything about FND.
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  This day and age, this day and age, there's more doctors that know about it.
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  But back in three, four, five years ago, it was hard to come across a doctor that specialized
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  in it so to get diagnosed it was harder.
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  To get diagnosed it was hard.
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  Sorry, I lost my train of thought and that's F and D brain.
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  You were talking about your place of work.
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  Yeah, so my place of work.
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  So, yes, so I got diagnosed on 08/30/2024.
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  And I was working at my place of employment.
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  When I went back to my place of employment, I had told them that I had gone back on a gradual
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  return to work.
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  Sorry, it's difficult.
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  And I had gone on a gradual return to work and they had told me that at some point that that
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  was not okay.
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  And I was pushing back at them and telling them, sorry.
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  This is my emotional support animal.
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  Well, he can he can feel
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  you getting emotional.
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  Right?
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  And as I said, I'll let you catch your breath.
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  You don't have to feel I didn't realize this was so fresh when I saw you reaching out on a
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  on a Facebook group and kinda putting your story out there.
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  I was very intrigued, and I had thought maybe that this had happened, you know, years ago
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  when you were just
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  coming out
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  and sharing this story, but this is very fresh.
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  So still very emotional and raw as well.
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  So Well, that happened last October.
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  So and that's
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  how months ago.
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  Exactly.
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  And that's how FND Warriors was created.
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  She she felt like she needed to do something it.
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  She felt like she wasn't getting the proper support in all the groups that we have on the
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  web right now.
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  And I felt the same way, actually.
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  And we met on another FND group.
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  We were having a meeting, and she was very frustrated about her situation.
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  And everybody was like, yeah.
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  Like, it's not easy.
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  But we were yeah.
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  She was feeling like she she couldn't, just stay
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  in market.
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  Dejected and just Exactly.
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  This was after
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  Especially if you had worked at this place for a long time, and it's like you've been dealing
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  with this disease, like you said, for maybe a decade, and you feel like you're the same
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  person that you were before someone put this label on you.
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  And now because this label is on you, they're like, yeah, you can't work here anymore.
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  Well, I should have just kept my mouth shut.
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  Well, basically what happened was, I had gone back and I was on a gradual return to work and
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  on October 18, there was a fire alarm.
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  And I had gone back to work in August in a four wheeled walker.
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  So, I'm a 39 year old patient in a four wheeled walker.
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  And you know, bought a walker and it said a max walk for seniors.
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  I'm 39 years old and I'm buying a walker that says it's for seniors.
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  Know, hits really at home at 39 years old.
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  And so I'm going back into the office in a walker and I can't get out of the building on
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  the Eighteenth Floor during a fire alarm.
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  And they tell me to go into a corner office and they pull out a bag of gas masks And I'm
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  supposed to put a gas mask on and that's supposed to protect me from a fire.
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  And I raised a health and safety complaint.
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  That was a Friday.
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  And on the Monday, I come into the office terminated for my position without cause.
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  This is where?
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  I'm not I'm not
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  Well, no.
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  No.
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  But I mean, where where do you live?
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  In what country?
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  In Ontario.
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  In Canada.
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  And do you have workplace rights?
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  Like, I know in The United States, like, we have, you know, ADA.
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  Right?
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  She's there is a lawsuit right now.
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  Why you can't talk about specifics on things, but okay.
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  Thanks.
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  So, thankfully, that's going.
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  But now in the meantime, right, like, you're you're kicked out of your workplace.
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  You are, you know, recently diagnosed with this disease.
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  Like you said,
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  39 benefits.
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  Using it Right.
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  As Right.
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  So what even happens?
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  Well, and see I've
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  helped in Canada.
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  I've I've helped I have free health care, but I don't have certain benefits that I don't have.
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  I don't there's certain benefits that I don't have.
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  Yes.
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  There are some benefits.
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  Can't have a therapist if we need it.
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  We cannot have and it's a mental health issue.
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  I mean, therapists are very, very important to get things better.
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  FND can get better, but you need proper treatment for it.
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  And that's where it's really hard to get the treatment because we don't have the benefit
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  because we're just getting we're not able to get jobs or most of most of us are not even
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  able to work.
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  And just that getting the disability income is another, thing I could talk about all day, but
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  is really, really hard to get.
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  So it's
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  just And Elizabeth, are you in Canada as well?
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  Are you in Ontario?
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  Yes.
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  I am.
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  I am in Alberta, Canada.
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  Okay.
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  So you're in Alberta.
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  Okay.
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  So I I live in South Dakota in The United States.
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  So just kinda South Of South Of Alberta through North Dakota.
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  Yes.
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  I know Alberta is a very very long, tall state or province, I guess, in Yeah.
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  I'm becoming much more international now that I'm doing these Zoom interviews.
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  I I spoke with a gal yesterday from Amsterdam who had spent ten years in Japan, and I'm like,
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  feel like I just traveled around the world.
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  Right.
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  Well, our group is actually worldwide, and we're meeting so many new people and new
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  culture and everything.
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  Like, we have drop ins every week for the people, and we have two time because all the
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  time zone are kind of
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  Right.
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  All over the place.
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  Separated in in different, you know, hemispheres.
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  There's The US time and there's the had a drop UK time.
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  Yeah.
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  We just had a drop in and we just had UK, like, drop in just at 01:00 today.
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  And we just had all our UK members come to it, and it was great with it was our biggest drop
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  in yet.
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  How fun now and is that growing out of so you start FND Warriors after now did you found this
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  association then loosely?
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  You say it's gonna be a nonprofit.
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  So still very early on in this.
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  But Yes.
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  After you lose your job in this kinda meantime is when you are like, there's no support for
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  me.
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  I don't have my therapy.
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  I don't have these things that I need.
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  So you start to form this community to kind of serve just not for you, but for everyone in
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  your FND community.
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  Yes.
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  I and and it because there there wasn't a support group in the format that that I was
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  looking for.
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  There wasn't there wasn't, you know, that tangible twenty four seven, you know, like help
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  that I could talk to someone that had FND like I could talk to Elizabeth like that old MSN
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  messenger day where I could just talk to Yahoo messenger where I could just get on and talk to
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  someone and just talk to someone who had FND and just like me.
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  Right.
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  And it's not just to talk to anyone.
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  It's the talk to someone that you can relate to and that can relate to you and that can hold
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  your hand even if it's virtually and be like, you're gonna get through it.
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  You know?
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  Like
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  We get it.
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  We get it.
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  Right?
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  It's it's such a it's it's so empowering to know that you're not alone and that you can go
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  through this because other people are doing it every day.
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  And it's in the community that we build up that confidence in our daily routine.
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  Right?
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  And it's also the fact that we wanna bond with the community.
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  Like, have different channels, like, on on our Discord, like pet channels, food channels, like
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  share about what you're doing, what what you like to do.
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  We have game nights.
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  We wanna bond with the people.
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  We wanna make sure that they have someone to talk to because most of the time, they don't.
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  Like, their family or their friends don't get it, and they Right.
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  Then dismiss them, and they don't
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  wanna It's so isolating.
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  Right.
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  The the disease itself is so isolating because it's just, like, slow it seems like it's slowly
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  taking you away from from who you were.
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  So you're being isolated from this cell that
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  There is definitely yeah.
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  There is definitely a new normal that we have.
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  There's Is it a degenerative disease that it's just going to get worse as you go or there is
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  some treatments We and
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  dynamic.
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  So every day is different.
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  We can get new symptoms anytime.
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  They can come and go within minutes or they can last for days.
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  There's nothing, there's no treatment, no cure.
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  It's really unknown in the medical community.
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  So there's nothing, there's no research or anything like that.
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  There there are a couple of, hospital around the world that are trying to get more research,
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  but it's really, early in all of this.
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  So Is is it just something I'm sorry, Ashley.
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  I know you've been waiting to chime in too.
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  No.
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  No.
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  No.
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  No.
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  It's okay.
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  Elizabeth is good at this stuff because she's been dealing with the disease longer than I
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  have, and she's been in the community a lot longer than I have.
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  That's why I like her to be a part of this and that's why she's now a co founder of FND
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  Warriors.
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  That's awesome.
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  How big is the group now?
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  We're just under a thousand people.
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  Wow!
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  Yeah, in a few months.
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  We started in
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  October.
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  Mhmm.
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  Wow.
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  And worldwide There
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  is really a need a need of people that that needs to find something.
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  I'm just thinking about a thousand people out there that thought they were all alone.
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  Right?
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  And then for those thousand people to find each other because it's not like there's billions of
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  people that have this disease.
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  There might not be a million people worldwide that have this disease.
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  Exactly.
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  You start talking about, you know, per capita, right, or per, you know, per square mile or,
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  you know, like, you're not spread out.
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  You're not gonna walk down your street and see people that have this disease.
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  Most of the people on
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  the street have no idea what it is just like me.
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  So finding someone with FND is practically, like, in your community is almost like, it's
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  really rare.
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  Yeah.
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  Your odds are probably better on hitting the lottery.
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  And people who actually and doctors and healthcare provider who knows about this are
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  also Yeah.
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  Really Yeah.
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  So it's just a really big when you get the diagnosis, it's a really big and when did you
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  get the diagnosis?
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  They give you a website.
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  That's it, good day.
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  And you have no resources, not like you don't know anything about it, and you wanna find
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  answers.
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  And I've been diagnosed for three years now.
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  And during that three years, I was able to do some research and everything, but I was really,
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  really alone, really struggling to find some answers, way to get through this.
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  And and all the communities are good, but they weren't what I was looking for.
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  But I knew I couldn't start this alone, so that's why Ashley and I started it together.
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  Right.
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  I have a good friend of mine.
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  Her name is Brienne, and she's so she's just a beautiful soul, but she was born with cerebral
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  palsy.
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  Right?
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  Mhmm.
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  And and now while some of the challenges with CP, are going to be similar to some, like, you
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  know, Ashley, you're having to use a walker and some of these things or there's a speech
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  impediment or there's something there.
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  The diseases are different.
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  Right?
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  And you're gonna face different challenges.
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  So, you know, while it's nice to have, you know, maybe some other groups that combine a
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  lot of these things together, it's really nice to just fall in with your own crew that know
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  exactly what you're going through, and I'm just blown away that you've built this community
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  around you.
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  I mean, obviously, it was needed.
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  It didn't grow out of this that quickly for nothing.
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  It was needed in the community.
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  I'm so glad that it's flourishing like that.
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  That's incredible.
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  Anything affinity related is needed.
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  There are lots of like, it's I know it's not a really common disease, but there are lots of
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  people in the world that are affected by it.
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  And we don't know anything about it.
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  No, exactly.
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  It seems
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  like you've been studying it for three years and you haven't really even been able to
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  describe exactly what it is?
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  I mean, the list of symptoms is probably a mile long, and they're not
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  So I I just wanna make sure that the public realize that FND is bad communication between
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  the brain and the body.
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  Right, muralized.
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  So the signals are not being sent the right Communication.
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  Communication, yeah.
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  And so it can affect any part of the body, the vision, all the senses.
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  Are seizures that are nonepileptic.
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  They are fainting.
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  I'd actually, you probably have a list in front of you or something, but, there are so many
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  things that can happen.
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  Though.
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  That I guess that was my point is that, like, because they don't know anything about it,
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  they're just like, well, sure.
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  I mean, you stubbed your toe, and throbbing a little bit.
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  You know?
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  Actually, the the the the moment they're they know that it's FND, like the health care
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  providers, they're like, oh, I I cannot help you.
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  I don't know anything about that.
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  So you're just going from one specialist to another and nobody wants to take care of it.
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  We're in between the neurology and the psychiatry, but not really fitting into any of
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  those.
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  So we don't have a system.
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  We don't have anything, to help us.
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  So it's about the small, hospitals that are doing small research that but can help there's
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  so much they can do.
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  Well and so that's what's needed.
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  Awareness number one, which I am going to be an advocate for FND awareness from now on.
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  I will be a warrior with you and and right by your side.
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  Obviously, we need to awareness brings funding.
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  Right?
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  As we bring awareness, then hopefully some more funding will get into the research, which is
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  what's really needed.
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  But what you ladies are doing and what you've done is probably the most important part is
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  that it needed a community of support.
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  Yeah.
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  The you you people that are out here suffering need someone to to lean on right now until it
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  gets figured out and until those things because those are long solutions.
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  It does none of that's gonna get done overnight, and many of you inside of your group
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  are going to be test subjects for the disease because the pool is so small to pull from.
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  Yeah.
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  Exactly.
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  And we always say that if something comes up, in the middle field, it's gonna take ten years
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  for the community the health care community to know about it.
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  So now they don't know anything.
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  So it's gonna take Yeah. A lot of
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  A lot of
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  We're looking at 2035 before there's even an inch moved, right, on the actual, like, having,
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  you know, therapeutics or what
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  something.
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  Exactly.
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  It's gonna be the rest of my life time before we have any therapeutics on F and D.
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  Yeah, and being recognized by different organizations.
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  I know that disability income is really hard to get.
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  Just being we need to be advocate for ourselves in all the situations because people don't get
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  it.
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  Government don't get it.
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  There have been petitions for that.
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  I know there's one in Canada that is going through right now.
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  Now.
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  Just to recognize that this is a disease.
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  There is something to talk about.
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  We don't have anything.
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  We need to have proper care.
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  Even if there is no cure, we need to be able to not be dismissed all the time or being from one
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  specialist to another.
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  We need to raise awareness to make sure that people get it.
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  And that's why we needed a website and that's why we needed to be F and D warriors.
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  That's why we needed, we just needed the community.
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  And that's why we have podcasts as well.
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  It's for newly diagnosed because it took me three years to get that information.
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  And I I do have, like and I I learn about it every day.
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  New symptoms.
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  Just earlier, I I learn about new symptoms.
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  There are so many things that can happen.
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  And most of the time, you're going to try to describe it to someone that doesn't have it and
• 20:23
  they get it.
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  So when you're going in a place like our group, we're just like, okay.
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  Well, this is a podcast that can happen.
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  That can like, this is normal in some way.
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  Like, it's not you're not alone.
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  People have experienced this.
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  So what we do for this, what you can do, like, and we have a different episode.
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  The last one was for memory loss because it's a big one in our community.
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  But yeah, we're just trying to get the the information to the people, but also some hope
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  of recovery.
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  Recovery is possible, but it takes a lot of time and it's it's really hard to do alone.
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  Well and exactly.
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  Especially if you're not getting the disability help, like, you're trying to work when you have
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  this debilitating disease.
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  You know?
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  Like
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  Well And
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  I haven't such as blazing away.
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  I haven't been working, and actually, that was due to a car accident that I got FND.
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  Actually, that was an accident, and then I got a surgery for the accident.
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  And I woke up from the surgery, and I didn't feel my skin on my entire body.
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  And I was like, that's weird.
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  And I haven't felt it since then.
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  I don't feel my skin.
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  That is a really weird one.
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  And I a week later, I was hospitalized because I was having burning sensation in my legs.
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  And, like, I I was feeling like my legs were on fire.
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  And I just saw a neurologist, and he was like, well, if you don't feel anything in your skin,
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  that is not neurologic.
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  Like, this this is not a problem with your nerve system.
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  This is a problem with your brain.
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  And that's how he got me diagnosed with FND.
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  And there's nothing you could do.
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  He's like, well, have fun.
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  You know?
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  And and I I had to
• 22:24
  just People wonder why nobody has any faith in the medical system anymore.
• 22:28
  Yeah.
• 22:30
  It's long gone.
• 22:31
  Long gone for me.
• 22:32
  I would assume so.
• 22:33
  Well, I just my heart really goes out to you both and your unique stories.
• 22:38
  I mean but I love that you're warriors.
• 22:41
  I love your fighter spirit that you said, well, screw you.
• 22:44
  If you're not gonna help me, we're gonna help ourselves, and we're gonna go help everybody
• 22:48
  else out there that's like us that you're kicking to the curb with no answers.
• 22:53
  Exactly.
• 22:54
  It's about empowering the community about giving them the positivity they need to get
• 23:03
  through this because a lot of people feel hopeless about all of this.
• 23:08
  This diagnosis is really, really bad.
• 23:12
  You never know if you're gonna get better.
• 23:14
  You never know.
• 23:15
  You don't even know what's happening to you right now.
• 23:19
  So what are you doing?
• 23:22
  What's the
• 23:22
  next step?
• 23:23
  You have no next steps.
• 23:24
  So just giving that positivity and, like, go one minute at a time if you need to, but go
• 23:30
  through it.
• 23:30
  You know?
• 23:30
  Right.
• 23:31
  And on top of that, you have a neurological disorder that's screwing up your your synapses
• 23:36
  in your brain.
• 23:37
  You know?
• 23:38
  So, yeah, of course, there's a component of it that is not just psychological, but, you know,
• 23:44
  the the heart of it.
• 23:46
  Right?
• 23:47
  The the pain that it's causing every day.
• 23:51
  And I'm sure that that, you know, that the group, you know, dulls that a little bit, but
• 23:56
  I'm sure you're still waking up and and stress every single day.
• 24:00
  I just can't even imagine.
• 24:02
  You have to mourn the life that you were going to live every single day.
• 24:08
  You have to mourn the life that you were going to live because you're not going to live that
• 24:12
  life every day.
• 24:15
  You need to mourn so many things.
• 24:17
  You need to mourn so many things.
• 24:19
  You're gonna lose so many things.
• 24:20
  Yeah.
• 24:21
  I lost my driver license.
• 24:22
  I was a school bus driver.
• 24:23
  I lost my driver license because I'm fainting.
• 24:26
  And I get it.
• 24:27
  I don't wanna I don't wanna drive with this, but I have a new life now.
• 24:32
  I have a new normal, like I said earlier.
• 24:35
  It's just different now.
• 24:37
  I'm not the person I was and but I I wouldn't be the person I am today if I didn't have that
• 24:45
  that condition either.
• 24:46
  You know?
• 24:48
  I feel Exactly like feel.
• 24:50
  Exactly what you're saying, Elizabeth, is that because it's hard for you, I'm sure, at this
• 24:56
  point to, like, wish that you didn't have it because this is your calling in life.
• 25:01
  Right?
• 25:01
  Like, if you weren't doing this for your community, who was going to do it?
• 25:06
  Nobody.
• 25:07
  I've waited three years.
• 25:08
  Nobody was doing it.
• 25:11
  And I was waiting for something to happen.
• 25:13
  And when Ashley started it, I was like, yep.
• 25:15
  I'm I'm I'm okay with
• 25:17
  this.
• 25:17
  You're ready.
• 25:18
  I want I wanna be part of this because I know it can change a lot of life.
• 25:23
  Even if it's one one person on one day or just getting some help anytime, That is something
• 25:31
  we did.
• 25:33
  Over a thousand and growing, and I hope that, you know, your own podcast and and being on
• 25:39
  this podcast and others helps us to just continue to raise awareness.
• 25:44
  And and I'm gonna do everything that I can to to be a warrior with you.
• 25:49
  I I wanna get plugged into your network.
• 25:51
  I'll be joining your email list so I can stay updated and with all of it and we would love to
• 25:58
  in whatever way we can here at the Scene Projects to assist the FND Warriors and before
• 26:05
  I let you get out of here, we're going to have you back.
• 26:08
  I want to have you in to tell your story to my co host, Sarah.
• 26:12
  We have the Get Better Together Project and you would both just be so lovely to have on there
• 26:19
  because we want to inspire people.
• 26:21
  And we want people to not feel like they're alone.
• 26:25
  I don't want anyone to ever feel like that.
• 26:26
  Exactly.
• 26:27
  Like you both have felt in your lives.
• 26:31
  Yeah.
• 26:32
  Yeah.
• 26:32
  We had to mourn.
• 26:33
  We know what what to do.
• 26:35
  We know what people are going through.
• 26:37
  We wanna help them because we were there.
• 26:40
  Elizabeth, can you go ahead and tell everybody how they can find everything?
• 26:45
  Yes.
• 26:46
  Well, Ashley, do you wanna do it?
• 26:48
  You go ahead and do it this time.
• 26:50
  Okay.
• 26:51
  Sounds good.
• 26:52
  So we you can join us on our Facebook group, which is Functional Neurological Disorder
• 27:00
  Support Group.
• 27:02
  We have a podcast on YouTube, which is Unraveling FND.
• 27:09
  We have a website which is fndwarriors.org where you can learn more about the cause, about
• 27:20
  everything, donate, and we have some merch as well to help fund our nonprofit and start start
• 27:29
  it off the ground.
• 27:32
  And is that it?
• 27:34
  We have an Instagram and X account that we have with FND Warriors as well.
• 27:39
  And our Discord.
• 27:41
  And our Discord!
• 27:42
  Our Discord group, that is the most important one.
• 27:45
  But yeah, which you can join anytime.
• 27:51
  On there's our YouTube. All
• 27:51
  All
• 27:52
  Yeah, you can go through our YouTube or Facebook group, either of them, and you can
• 27:59
  just log in into the the server, and you'll anybody is welcome.
• 28:06
  Well, awesome.
• 28:07
  Ashley, do you want to chime in with anything before I let you out of here?
• 28:12
  Starting this was probably one of the hardest things that I've ever had to do.
• 28:18
  I've going through this has probably been one of the hardest things that I've ever had to go
• 28:24
  through to getting to this.
• 28:27
  But it's been one of the most rewarding things that I've ever done and it's meeting everyone,
• 28:34
  meeting Elizabeth, meeting everyone.
• 28:37
  Dealing with this illness is on daily is so hard and so difficult.
• 28:45
  But just meeting everyone has been so rewarding and educating and bringing awareness and just
• 28:55
  educating everyone is bringing my nursing back into it.
• 28:59
  It just warms my heart to do it.
• 29:03
  Oh, you were a nurse?
• 29:04
  Well, I wasn't so I went to nursing school and I graduated a nursing school, but I never
• 29:12
  finished my nursing license just because I was dealing with FND symptoms at the time.
• 29:17
  So I never actually practices as a nurse.
• 29:19
  So I kind of
• 29:21
  But that was kind of
• 29:22
  She has a background.
• 29:23
  Right.
• 29:24
  Well, but even the nursing was kinda taken from you because of the before you were ever
• 29:29
  diagnosed with the disease Yeah.
• 29:31
  The symptoms were already affecting your life.
• 29:34
  So like you said, you've been living with this a lot longer.
• 29:38
  I am just so blessed to to meet you both.
• 29:41
  I'm so proud of you for doing what you're doing
• 29:44
  so much.
• 29:44
  For living what you've lived through to this point.
• 29:47
  I know it's not easy every day.
• 29:49
  I am here to help in any way.
• 29:51
  I know our whole team is behind me in that, and this won't be the last time that we'll be
• 29:57
  talking, and I hope that we can help you in whatever fundraising efforts we can do and to
• 30:02
  continue to raise awareness for functional neurological disorder.
• 30:09
  We'll see you soon then.
• 30:22
  Thanks for tuning in to the scene projects podcast network.
• 30:27
  We appreciate you listening.
• 30:29
  You can find more at thesceneprojects.com.
• 30:32
  Join our community.