This episode of Walk and Roll Live delves into the intricate and often misunderstood realm of Functional Neurological Disorder (FND) through the compelling narrative of our guest, Gemma Davies. In our discussion, we explore the profound impact of her diagnosis on her life, illuminating the challenges she faced and the strength she exhibited in navigating a complex medical landscape that often dismissed her experiences. Gemma, drawing on her professional background as a nutritionist, has established "Wellness Without Barriers," an initiative aimed at supporting individuals with disabilities by promoting a holistic approach to wellness. Our conversation highlights the importance of community, understanding, and the necessity for accessible resources in the realm of disability. Join us as we uncover how Gemma transforms her personal journey into a beacon of hope and guidance for others facing similar adversities.

Takeaways:

• The podcast emphasizes the importance of amplifying the voices of the disability community, showcasing various perspectives and experiences.
• Addie Rich shares her personal journey as a polio survivor, highlighting the significance of community and support in navigating challenges.
• Gemma Davies discusses her experience with Functional Neurological Disorder (FND) and the complexities of receiving a diagnosis, illustrating the struggles faced by many.
• The hosts stress the necessity of understanding and empathy towards individuals with disabilities, advocating for a more informed and compassionate society.
• Listeners are encouraged to engage with resources that support individuals with disabilities, promoting awareness and community connection.
• The episode showcases the transformative power of sharing personal stories, fostering a sense of belonging and solidarity within the disability community.

Links referenced in this episode:

• fnddimensions.com
• fndhope.org
• wellnesswithoutbarriers.com

Companies mentioned in this episode:

• Casa Colina
• Triumph Foundation
• Kelly Brush foundation
• Aguiar Professional Training
• Wellness Without Barriers
• FNDing Dimensions
• FND Hope

The following is a productions original series.

Hello, and welcome to Walk and Roll Live.

I'm Doug Vincent, joined by Addie Rich.

Our podcast is dedicated to amplifying the voices of.

Of the disability community.

I am a polio survivor.

What say you?

I say I still have cp.

I have not woken up with the magic wand fixer yet.

That's.

That's.

That's the reason everybody tunes in.

Will Addie still have cp?

You know, it's so funny, though, A lot of people ask, like, if you had a magic wish, would you take it away?

And I'm like, never.

Like, that is never my first wish.

I'm like, I would like to drive.

I would like to wear high heels.

Those are my wishes.

But it's never removed this burden for me because it's not a burden.

Me.

Me, so.

Exactly.

Exactly.

Yeah, I get that.

Asked that a lot.

And it's.

It's like.

I know.

I mean, I'm happy where I'm at, you know, in every.

Every experience of my life, you know, even.

Even outside of disability as shaped who I am.

So I'm not gonna take it away.

Yeah, for sure.

And how much you're, like, involved in the community and how many wonderful people we meet.

I'm like, what the hell?

Sit here like everybody else and not.

Yeah, that's the nice thing.

I just came from Casaglina, you know, just real quick, so people know.

Because I'm getting together with my.

My siblings in Las Vegas this weekend, so that should be a blast.

And so just, you know, I have something.

Tomorrow is going to take up most of the day.

Sunday, I'll be traveling.

So we just decided to do it on Friday, get it done, and we'll put it all together.

But.

And what was my point of that?

Oh, so when I say I went to bocce ball today at Casa Collina.

Yeah, I'm talking about Friday.

And they do that.

You know, we had them on a few weeks ago.

If you want to go back and listen to all that.

Did you see everybody?

I saw a lot of people.

Yeah, I saw.

I saw people that, you know, Well, I saw Lisa.

I didn't see Dr. Tran, but I saw Lisa.

And I've seen her, you know, two or three times since we were on.

Because.

Yeah, yeah, exactly.

At the Expo.

And then.

And then I.

Because I told you I went to a tournament for bocce ball, then I went to the Burbank Just for practice.

Yeah.

It's your new love.

I'm running into different people.

Yes.

So I saw people today from all of those things.

Amazing.

And new people, like you say, and new people.

A firefighter.

And I didn't get enough chance where we were chatting, and then we started playing, so I didn't get a chance to get his whole story.

But I'm gonna send a email to Lisa at Casiclina and kind of put it out to her mail list, you know, if anybody wants to get in touch with us to come on and, you know, just have them so we can communicate with them.

So, yeah, we'll be able to keep in touch.

So that was fun.

Yeah.

And then.

Yay.

So the first time that I played, we were in a. I guess a basketball or.

No, no, it was a.

It was the racquetball court at.

At the Triumph Foundation Festival.

Adaptive sports festival.

And then last Sunday when I went to the Burbank, that was a linoleum floor.

And I show up today thinking we're gonna maybe play on a basketball court, but it was like an artificial turf, very short cropped, you know, so I'm thinking, oh, this is gonna be slowing it out in so many versions, you know?

So I'm just getting a feel for how the ball rolls, how far it rolls when you throw it like this and grass.

What?

But it went much faster than I thought it would go, so.

Okay.

Yeah, Good times.

Good times.

Yeah.

So we'll do that.

And they've got some more events coming up.

I'm gonna get on their mailing list so we can share those with you.

And I know we're gonna.

We made contact with the Kelly Brush foundation, which I'm trying.

Excited about that.

Trying to remember where they were now.

But we'll.

We'll talk about them more.

We'll have them on down the road and.

And I'm going to have them send me events so that we can kind of help people find events like this around the country.

Yeah.

Weather is better.

And if you're like me, you have horrible allergies right now.

But it's nice outside.

Yeah.

So you sorry enough about me.

How about you?

You know, month end in the accounting.

World, work's been hell.

Works in hell.

I'm glad to be sitting with you.

It's okay.

It's Friday.

We are not going to complain.

Closed my office door, metaphorically, and was like, tour time.

Done not to be open till Monday.

So you got any plans this weekend?

Hanging out with friends.

I think I'm going To be a big girl and go to the Laundromat to wash all the comforters.

Oh, I hear that.

I, I, I have, the term is an extra large washer.

But it, it, I have to stuff my.

Yeah, there's no way next time I think I'm going to go to a laundry or take it somewhere and have them do it.

Yeah.

I feel like when you get spring, this is truly like the spring cleaning.

You're like, okay, I need this really washed, not like shaken out.

So yeah, I think that's going to be my big thing.

And I wonder how clean it actually gets when it's stuffed that tightly in there.

I know.

And that's my other thought.

Right.

Because like with dogs you're like, okay, how many times have you been outside that kind of, you get on that kick where you're grossed out.

Well, I know it takes about three hour long cycles in the dryer to get dry, you know, because it's not really tumbling around, it's just.

Yeah.

Very good.

Thank you.

To.

I'm trying to think top of my.

Is that the datability?

Yes, absolutely.

Last week.

Great.

The episode's been doing well.

I think I mentioned a couple weeks ago we changed the platform that we publish it so, so nothing really changes but we have to make sure it gets there to all, you know, Spotify's and Apple and all that stuff.

So.

Still working on that a little bit.

You know, if everything fails, you know, just do a search on, you know, like Spotify or something and you'll be able to find it.

I did, I think I got rid of the other one from Spotify.

I think they took it down when I canceled that account because there for a while there were two accounts like on Spotify.

One didn't work or didn't have the newer episodes.

Yeah.

So that all straightened out.

Yeah.

So that's all I got.

Don't forget to like and subscribe and share and all those things, please, if you're enjoying this at all.

Coming up today, mail.

We like it when mail comes.

Oh yeah, yeah, yeah.

I did have a couple other things.

I wasn't quite ready though prepared to do it.

But I'll, I'll bring them up.

Yeah.

There's been a good next time.

Yes.

Coming up today, it's an interview with Gemma Davies, Wellness Without Barriers.

It is a.

Another trip across the pond.

So, you know she's got one of those delightful accents from the uk.

Yeah.

She has fnd, which I believe is functional neurological disorder.

I think it is.

Yeah.

Yeah.

So she has some issues trying to find a, a diagnosis.

And if I remember, it was still not 100% right.

Is that something?

I mean, it's like the.

We don't know what this is 100.

So we're going to tell you this.

It sounds like they kind of give a blanket diagnosis once they know something is wrong and it's not just psychological because I think that that is the hardest part to sort out.

Right.

When you're going to a facility with ABCD and then you go two weeks later with something different.

And then, you know what I mean?

They're like, they kind of think it's like munch housings almost.

But then they really realize like, no, this is a real thing.

And I think that's a lot.

Is that people getting believed to get the proper care.

Yeah.

And the big part of diagnosis is eliminating things until you come down to one thing.

Okay, this has got to be it.

Because it's not anything else.

XYZ, 14 other things.

And I think because of how difficult it was for her, that's why she started wellness without barriers to, you know, to give support and all those things.

You're not alone, blah, blah, blah.

But we'll hear all about that in our interview today.

So stick with us.

And we'll be right back after this word from Agar Professional Training.

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From the Agar Professional Training Studios, you're listening to Walk and Roll Live.

Disability Story.

It's a disabled life Rolling alone Leaving my struggles behind?

Feeling strong the road ain't easy but that's just fine?

Cause I'm living my truth, Walking my own line Life is full of toy I wouldn't change a thing Overcoming what life hands me.

You hear me say tough times don't last but tough people do.

It's a disabled life and I'm breaking through every twist and turn.

Yes, you are listening to Walk and Roll Live.

I'm here, Addie is here, and our guest for this week is here.

I'll give you her first name.

Her name is Jenna.

And you might be able to.

To detect she speaks English, but it is got a little bit of an accent and some of the words are different than we speak, but it's going to be charming, I'm sure.

So if you just give a brief introduction and then we'll.

We'll go to all the details in our interview.

Okay.

Hello, my name is Shema Davies.

I am 42.

Yeah.

Not 43 yet.

42.

And I live in United Kingdom in a little town called Westbury in Wiltshire.

I have a disability that happened five years ago.

It's called functional neurological disorder, or FND for short.

Okay.

Yeah.

You know, it's something I'm seeing on social media and I've started to put it together since we met and we've chatted a little bit.

But it sounds like it may manifest itself a little differently from person to person.

Is that right?

It does, yeah.

A lot of people say that it's due to trauma or stress, but it's pretty much anything can happen and it can be at any age as well.

Yeah.

Well, good.

That.

That's what I'm not good.

But that's one of my questions.

The first questions I wanted to ask is, you know, you're just going along with your life and suddenly five years ago, this pops up.

How did you first recognize something was different?

I spent eight hours in a hospital through.

They thought I'd had a stroke.

So they took me in with a fast ambulance and they did all sorts of checks on me.

And I think I realized something was wrong when I couldn't speak and I couldn't feel the left side of my body.

And that still hasn't come back.

I've had to teach myself to talk again properly.

It's taken a while, but I've got that.

You got it?

You got it?

Yes.

Sounds right.

So that obviously was part of the reason why they thought you had a stroke because part of your, you know, one hemisphere of your.

Your body was out.

It was, yeah.

And a number of tests to figure out, okay, it wasn't a stroke.

Now, what is it?

Well, they didn't know to start with.

They did MRI scans, they did CT scans, blood tests, all sorts, and everything came back completely clear.

There was nothing medically they could see that was wrong, but looking at me, you could very clearly see there was something wrong.

Yeah.

Unfortunately, it wasn't a very good experience within the hospital.

I was sent home the day after.

Bearing in mind I Couldn't even walk.

My partner had to carry me out with a leaflet saying, you have fnd crazy.

Like, yeah, is that too.

I mean, I feel like Doug and I and interview so many people.

She wrote this.

Reminds me of Jenna Nunes too.

Doug.

It's like Jenna and Gemma, they are very, very close.

But the similar of like, oh, they've had a stroke.

Okay.

We don't know what to do with you.

See.

See you.

Because we can't give you a diagnosis.

Please leave the bed.

Like, yeah, sad.

See you later.

Good luck.

Yeah.

So no plans to.

To maybe come up with some other tests or get you together with a specialist or anything?

No, I didn't.

I didn't even get to see my neurologist on that day.

And I was given a follow up appointment with him, which due to Covid, because it was around that time, I ended up over two years before I saw him.

But I did have an occupational therapist come out to my house and teach me how to walk again.

That's insane.

I mean, my.

So my aunt and uncle lived in Europe for 17 years, so I am slightly acquainted with the medical system.

And like, if you're not dying or bleeding to death or it's like not fully urgent, you go on a list, Right.

I think everybody's like, yeah, socialized medicine, this is a great thing.

But what they don't know is that there's these other sides of it where it's like, okay, Gemma, you are not dying.

There is nothing we can immediately pinpoint that we can give you a medication for.

So go wait, go wait over there and be a good girl.

Kind of, you know, because they're triaging in a way.

And I understand that there is limitations, but if it's not happening to you, you don't understand how deeply the limitations, you know, affect your life.

Given the fact also that they're like, here, have a leaflet.

I mean, at least they got close enough to give you a leaflet.

Like some of our guests haven't even gotten a leaflet because they just go, well, we don't know, go home.

So with no plan, no, no plan to follow up and you know, take.

Let us have some time to think about it and we'll see.

We can come up with and come back in a week, you know, nothing.

Yeah.

If you're not bleeding out, they're like,.

That's pretty much it.

So yikes.

So then do you have to kick into kind of action and try to find some, some help for yourself?

So it's.

I Have to laugh, because if I don't, I'm crying.

Just going back over it is kind of.

It's really emotional.

But my partner had to sit there whilst I was having seizures and do research and find out what FND was and the different symptoms that can come with it.

And I was having seizures for hours.

It wasn't even just minutes.

It was hours.

And we were really worried because you have a seizure, they instantly say epilepsy.

Right.

It turns turns out they're not epileptic, so they're not all at all.

It's just how my neurologist described it to me.

In the end, when he properly diagnosed me, he said it's like a computer rebooting, except not all the programs working.

Yeah, right.

I just want to make sure I didn't miss anything, because.

Did you leave the hospital with any kind of diagnosis?

So at what point did you know to even start researching fnd?

When they gave the leaflet.

They gave the leaflet to my partner, and he took it home, and he sat for hours just doing research, trying to find out what it was.

And this wasn't a diagnosis.

This was just.

Here's a possibility.

Look at this leaflet.

And because it took so long for me to see the neurologist, I was only diagnosed about two years ago.

Yeah.

Yeah.

Oh, my goodness.

Saying, like, officially diagnosed, but.

So are you treating yourself basically, for, like, three years?

I'm sorry.

My mic.

I'm trying to wrap my mind around this.

And you lived it.

Your mind is blown.

I'm gonna get emotional.

Gee, yeah.

All right, I'm sorry, Eddie.

Go ahead.

No, I was gonna say so, like.

I mean, that's like our.

Our brains cannot compute, like, because.

Whoa.

But at the same time, I think it's even more important that people realize, like, before this, you were kind of quote, unquote, normal.

So can you tell us about, like, young life and growing up?

Like, were there weird things that happened that made your parents or the people around you go, maybe something's different, or.

It just was like, wham, out of nowhere.

It was literally wham.

Out of nowhere.

I mean, I was growing up.

I was really physical out all the time.

I had such a great social life, and I have a twin sister as well, so we were really, really close.

And since this has happened, we don't speak to each other anymore, and we just.

It's almost like I could.

I could do something, and now I can't.

So I used to go hiking a lot.

And actually, literally, I think it was a couple of months before I had this.

This stroke, this episode, as they call it, I climbed the highest mountain in England, Scaffold pike, with my partner.

And it was a massive achievement for me and I was fit and healthy at that point.

And I can't do that now.

I can't go on for long walks.

And if I go on holiday now, I have to plan three days before, three days after, and the actual holiday itself for me to be able to get my head around the fact that I'm going on holiday, actually experience it, and then three days to recover afterwards.

So I've gone from a normal child that would do everything all the time, always out, always active, to somebody that very rarely leaves the house.

Yeah.

And then that's going to affect your mental health, I imagine, right?

Yes, yes, it does, massively.

If this is too emotional, it's fine.

But I'm just curious, so what happened with your relationship with your sister?

Just because you can't be active, the relationship just doesn't go forward.

She.

She became my carer for two years and she was just there all the time, and I got well enough to want to go back to work.

And she struggled with that because we were so close.

She was so helpful and so wanted me to be there with her all the time, because it happened for two years.

She.

She was basically washing me, dressing me, all sorts for two years.

And then it was.

I dropped it to whether I was thinking of going back to work.

The communication after that was just.

It wasn't great.

And we haven't spoken for about two years.

Well, hopefully that'll work itself out.

So it's kind of started at a place of love, you know, she just cared for you so much, but then somehow the communication broke down.

Yeah.

Yeah.

I think it just probably got a bit too much from her for her, emotionally.

Yeah, yeah.

Seeing me have seizures and things like that, I think was very hard for her.

Well.

And as a twin, right, you guys are like.

I mean, my sister and I are like peanut butter and jelly.

We live on two coasts.

I'm on the east coast, she's on the West Coast.

And when we're together, it's like we can't get close enough.

So being a twin, you guys are literally, like, intertwined from the get.

Right.

So you get this closeness back, back, I would assume, as adults.

And she's.

You know what I mean?

Like, you're back wrapped up in her and then you're like, okay, cool, you help me be independent.

And she's like, no, not cool.

I'm not ready.

Like, it's just interesting how you do anything for them.

But then also there is conditions, whether you mean it or not, because you're a human and humans are.

Conditional separation anxiety.

Yes, I totally agree.

She probably would have done anything to keep me bedridden, I think, just so that she could be there with me all day.

And so, yeah, that's one of those things.

So tell us a little more.

Like you have a particular set of symptoms.

Is it different from person to person?

I think I alluded to it with what I've seen on social media, that there are a lot of spasms.

Are you still experiencing that or do you.

Yeah, yeah, I have a slight tick in my hand every now and then and my left hand because I can't feel it anyway.

But, yeah, my.

My family notice that every now and then my.

Gets jittery like that, and it won't just stay like that.

It gets really, really bad.

And it.

It's almost like I'm throwing my hands up.

So, yeah, I mean, when it.

It gets bad, it does get bad.

I've been known to hit random people in the street by accident just because of the ticks.

And I think that's down to my anxiety stressing me out.

And.

And.

And that happens, right?

Yeah, when I get.

When I get tired, I sound like I'm drunk.

Yeah, I slur my words like you would if you were having a stroke, let's say.

But, yeah, it's different for everybody.

I have symptoms that others don't have and.

And so on and so forth.

I just started volunteering at an FND group, and the people that I've met there are so amazing.

One woman comes and she has literally drop seizures, drop attacks, every sort of ten minutes or so, and they're only last a few seconds, but you can, you know, and she's in a.

She's wheelchair bound, so she can't walk or anything like that.

But she is such an inspiration because she just laughs about it.

She just sits and laughs.

She's had it for like 10 years or so.

But, yeah, I mean, the youngest person that I know that's got it is 14.

Very interesting it sounds because it is neurological and it's like in your brain or wherever it originates, right.

Like, it's kind of wherever it hits, you know, it's a little bit of, like.

It's a little bit of, you know, Tourette's.

It's a little bit seizures.

It's.

It's like a salad of what's going on.

But it's all probably driven by your brain having the reset button.

In its own weird way.

That's it exactly.

Everybody is different.

Fascinating and frustrating all in one.

I know that before I turned four days, before I turned 18, I had a grand mal seizure.

I was working in a neurology office.

I fell off a step ladder and like hit the, hit the filing cabinet, hit the floor.

Didn't feel any of it.

And they're like, why didn't you tell us you had seizures?

I was like, what are you talking about?

So, I mean, I know that like they do like you just randomly check out the brain needs to like reset.

I mean, luckily I'm medication controlled now.

I've only ever had absence spells.

But I do understand where it's like you're talking to me and I can't answer you.

I see you, I hear you.

I know who you, you are.

Sometimes I don't.

But, you know, it's just weird how your brain is like a slight reset.

Yeah.

So it must make it challenging to treat as well now.

And how do they do that as a.

Medications are involved or.

Yeah.

So one of the biggest myths with FND is that it is just mental health issues.

It's actually not.

It's actually a neurological condition and because they see it as a mental health condition, you are treated with anxiety and depression drugs.

If your seizures are that bad, if you do have the seizures, then you get medicated for them.

So I'm actually just medicated for anxiety and depression and migraines.

So I have tablets for literally everything.

But not, not epileptic seizures.

That's the only thing I don't get treated for.

Right.

They just skip that.

They're like, she's got enough pills.

But do you have.

Do you have the seizures once the other things are under control or.

No, I still have seizures regardless.

A lot of it for me personally is about my stress levels.

Yeah.

If I've got too much on, I start to pick up on little signs.

It's really difficult to explain, but the only way that I, I know it's going to happen.

I get like a brain fog beforehand.

No, I totally.

I.

Yes.

Makes sense.

I know it.

Or like the tip of my nose will itch, smell something weird.

Yeah.

It's the strangest isn't can happen seconds.

Before or it can happen like an hour before.

It doesn't.

All I know is it is going to happen.

So I have to ground myself and do what the CBT that they taught me.

After two years of waiting to see my Neurologist.

They're like, oh, you can go and see this person who'll give you cbt.

I.

Six weeks of CBT over the phone.

That was it.

Yeah.

So explain what CBT is.

I know what it is.

Doug might know what it is, but listeners might not.

So CBT is cognitive behavioral therapy.

So basically, what they do is they teach you to ground yourself, to make yourself feel, see, hear, and smell whatever is in the room.

I had a doctor called Andrew Curtley, and he was really, really good.

He taught me about counting backwards from 100.

Certain smells, certain colors, to look around the room for certain colors, like, even weird ones that, you know do not exist, and you do not have them in your house.

Just find them.

And that actually can help prolong the time before you have the seizure.

It doesn't always work, but it did help to start with.

My seizures are.

I always know when they're coming on now.

They don't shock me when they come on.

Yeah, there was a couple of times I have a drop attack, and.

And I'll be like, what was I doing?

Don't know.

Yeah, exactly.

Like, huh.

But CBT works because it brings you back to your body out of the anxieties.

And so this is a little bit of my forensic psychology learning.

CBT works because it brings you back to your body and things that you can ground in that are physical and real, and it stops the anxiety spiral of, you know, this is real, even if your brain knows it isn't real.

Right.

So we're going for real things that are placeable to kind of divert your brain from the thoughts that are cycling.

So does the.

You were talking about.

They use antidepressant medications.

Have they determined whether the, you know, the mental anxiety part of it is a symptom of fnd or does it.

Is it on set?

Because, you know, you're dealing with all of this and you may be depressed.

I think it's.

From my personal perspective, it's a little bit of both.

I. I have had things go on in my life that would stress even the most busiest person in the world out, but not all at once.

It's all comes or gradually and things like that.

So I think for me, it was a little bit of depression probably to start with before the actual event happened.

And I think it's exacerbated by the fact that I have a pendy.

Is there an event where you are like, oh, that was the kicker, because, I mean, it's kind of like your cup runneth over, and then your Neurological system just says, can't do it now, I'm not gonna work.

Right.

Are there things that even not sharing what they are, but is there a time where you're like, oh, this plus this plus plus that, plus this.

Probably did that, yes.

And actually I worked that out, sat down, talking with my partner, just having a chat with him, and we were going through everything that had happened sort of the previous 10 years, and I was really shocked at how much was going on in my life and how I survived it, if I'm honest with you.

I don't know.

But yeah, for me it was a lot of stress, a lot of trauma.

But for other people, it can be a little bit like you when you had your, your seizure, you fell, you hit your head.

For some people, it's just like that.

For the 14 year old that I know that has FND, she just started feeling tingles in her toes, his tingling feeling in her toes.

And then all of a next day she was paralyzed.

She couldn't move.

Wow.

Yeah.

Yeah, it happens in different ways.

I think it all depends on the circumstance.

But it's the part where the brain goes, no more.

I can't do this anymore.

Yeah, tap it out.

Yeah, for sure.

Yeah, for sure.

So I'm sure our listening audience, you know, this may be new to them, maybe due to a lot of people, but I know in our previous conversation when we were kind of arranging to have you on, you found an association or some kind of a group that we got support.

So evidently it must be enough people that they decided to organize and have, if nothing else, support groups and, you know, whatever kind of treatment do.

They do research there as well.

Tell us more about that.

So I'm now involved with a charity up north of where I live called Fnding Dimensions and they do research, they provide resources for people.

They do days out.

They've got different types of groups.

So they've got a group for men, group for women.

They've got people that have a group for people have seizures, a group for people that can't walk.

You know, they, they're so big up where they are in Derbyshire and, and they are the people that I turn to now if I need help.

I don't know how long they've been going on.

But yeah, there's such a good resource place.

I recommend if anybody does have questions about FND to, to look at FND dimensions because they are so good.

And actually what I didn't realize until about A year ago, Lorraine Kelly, I don't know if you've heard of her, she's a TV personality in the UK and she's actually an advocate for FND Hope, which is another charity.

So.

And she's on TV every day.

So, yeah, she's.

I didn't realize she was.

Until I looked.

I actually looked it up.

You've got.

You've got quite a few of FND charities within the uk, but because FND is not widely known like that, people don't know about it for sure.

So not only those big things, though, it happens to you.

And you don't just sit at home and say, okay, I'm gonna deal with this.

You.

You decide that you're going to create something.

And so because of the wellness industry kind of being like, get out of your own head, get better and be done with this, you decided to do something.

So what did you do?

I did.

So I.

It came personally for me from seeing the doctor.

I had gained four stone because I was immobile, I couldn't move.

And I went to see my GP and I laugh because I will cry if I don't.

I got told to go to a slimming.

That's all he told me, go to a slimming club.

No other help, no other advice on what to do.

And.

And that for me was like, wow.

So as a nutritionist, I was a qualified nutritionist.

Anyway, I decided that I was going to be that help.

So that's why I created Wellness Without Barriers.

So we try and do it slowly, small steps, as gentle as possible.

And I would love to welcome anybody that wants to just rest, if I'm honest with you, because rest is such a big, big thing with wellness.

A lot of people call me lazy.

I have been called lazy to my face quite a few times, but I wouldn't have it any other way.

I can sit at home now.

I can sit on my computer and I know when it's getting too much for me and that's when I back off and go and rest.

So.

And that's what I'm trying to teach others to do, is to listen to their bodies, listen to their minds and just rest.

Yeah.

Sometimes you can be counterproductive and have to do the work all over again, but just, you know, rest and go back at it.

So if you.

Yeah.

If you found some strategies of your own that work for you, just with your experience now of dealing with this for five years.

I have.

Yes.

So I. I've learned very quickly to read the signs of when I'm doing too much.

I know when I'm becoming overwhelmed and I know if I have taken on too much, that's when I start counseling appointments.

If I have, if I say to one of my friends, oh, we'll meet for coffee, I'll cancel that appointment because I know I'm not going to be able to make it.

And if I do make it, there's going to be a scene.

So I, it's difficult to explain, but I get, I give myself a time limit for what specific activity I'm doing.

Whether I'm finished or not, that's the time I've got to do.

And I've learned the hard way that if I don't follow that time limit, then my symptoms come on even worse.

So, yeah, it's about just listening to your body.

The techniques that I teach are very much small steps, simple things like for example, if I don't think you're getting enough hydration in, for example, just have an extra glass of water.

And for somebody that is immobile and disabled, they're not always going to have access to a glass of water.

So it would make sense to have a bottle of water next to you.

Just small little things like that.

Baby steps, as I call them.

And the smaller the better because they actually have more chance of sinking in and becoming a habit.

So, yeah, I've learned quite a lot, but I've learned the hard way.

Yeah.

So small things but effective things, it sounds like.

Yeah.

So if somebody comes to you through your organization, I, you know, not the, not the, all the details, but just kind of walk us through a little bit how they get support and education from you.

Okay.

So I, because I've collaborated with FND dimensions, they are happy to provide the resources.

So they've sent me a lot of information, a lot of printouts that you can send over by PDF and things like that.

So they are a great help and resource.

So I do turn to them quite a lot.

So when I first meet somebody, I go through like a questionnaire that I have just to gauge what their disability is as such.

Because you can get neurodiverse people that have struggles with textures of food, flavors, even things like holding spoons feel funny to them.

And I didn't realize the extent of it until I actually completed a course on nutrition for disabled individuals.

And I didn't realize how, how something like just holding a spoon for somebody who's, who's got neuro, like ADHD or autism can actually be a sensory overload for them.

So it's to Find out really what, what it is that they have issues with, the struggles that they have and just basically try to give them advice with that.

I do a 30 minute free consultation anyway, so that'll always be there no matter what.

But that's always the first thing I do is I have a nice chat with them, introduce myself, explain what I do, and then we go through plan, we set up a nutrition plan, a wellness plan, and they, we help the best they can, even if it's something silly like going to go into the shop for them because they can't get out.

I have people, family and friends who do that for me.

Everybody's sort of dbs check, police check, so they can go shopping and they drop it off for them on their doorstep and it's done.

So it's just silly little things.

And it sounds like me saying it myself, like a sensory overload which is holding a spoon.

And actually I just thought to myself, well, hold on a minute.

Something that small can make a big, big difference to something.

Exactly.

Yeah.

So that's, that's pretty much what I do.

I just try and get people to do things, little things at once, because if you do too much, it's.

It's overwhelming.

And you're doing this for everybody, not just around the uk, but the world at large.

Everybody.

Right.

Yeah.

All right, well, I know I put your blog up on our resource page so people can reach you there.

Yeah.

But I was gonna say, I think that it's also interesting though, like you saying a silly little thing.

Everybody, what we see as big and small is different.

Right.

So it's not a silly little thing if it's insurmountable to you.

Like for me, I don't drive.

Right.

So people are like, oh, instacart is frivolous.

No, it's not.

It's called independence for me.

But because you drive, it seems frivolous to you.

So it's all a scale.

Right.

And I think probably a lot of what you do as well, that has nothing to do with like the services is being believed and heard is a huge thing because you kind of touched on that, like the depression and all the different things of staying home and not being able to get out because you're concerned about your symptoms or you drink your tick or whatever.

Right.

So I think that there is community support and like just in having a coach that believes them and doesn't start with, okay, so first of all, it's in your head and now we're going to get you out of your head.

No.

Okay.

I know what it's like to be you.

That's part of the reason why we tell these stories is.

Is for that education and awareness component of it, you know?

Now maybe people have a little more grace when they see somebody that's not like them, that they're holding their spoon funny.

Well, maybe that's the way it feels right to them.

So.

So your family and friends, they've kind of are in the rhythm of Gemma and how long she can go out for tea or a cuppa, right?

Yeah, absolutely.

They get me out as much as they can.

I don't drive either.

I lost my license too, because of my seizures.

So when I get in a car, I get so excited.

I'm tired of in 10 minutes, have my cup of tea and if I'm lucky I get a cake as well.

And then.

And then it's back home again.

Back.

Yeah, but it just.

Yeah.

It's all the difference in the world to you, right?

Yeah.

It's got to help with your mental health as well, just to get out.

Yeah.

Addie, anything I missed that you're curious about?

No, I mean, I just.

I think it's so cool.

I think this is.

Every time we learn about a new story and a new disorder and everything, I'm always like, wow.

Like, like.

Because they're so.

As many humans as there are on the world, there are differences and even then probably some, right?

Because we come as combos.

So it's.

It's just fascinating to.

To have somebody say, like, hey, this really happened to me.

It set me on my butt and now I'm.

Now I'm in a place that, like, I can function and I can manage me, but hey, I could help.

And I think that's what the helpers in the world do.

Kind of like me with plot twist saying, hey, we're going to do this.

Like, I could just hide and be like, woo, all this crazy crap has happened and I'm not going to do anything with it, but try to breathe through a straw.

Now instead, there are people like you and me who say, okay, I have this knowledge and I can't keep it to myself because that's not my mission.

Right?

Yeah.

Yeah.

And that's it.

If I'd had that knowledge, then I wouldn't need to be that person.

So kind of grateful in a way that I was treated the way I was because I wouldn't be here.

And it has to be people like you who have that spirit that don't just like crumple and go Lay and wait.

Wait for the end of things to come.

Right.

You need you who can go.

Okay.

That was a learning experience.

That was not nice.

Let's keep on keeping on.

Yeah.

Well, you know, and I'm moved by the greater power that maybe had a plan for you being a dietitian, and you can use that now in, you know, this turn that your life has taken.

Yeah, I'm grateful for that.

Right.

Let everybody know where they can find you.

What's the best place?

Best place?

Probably Facebook.

I've got Facebook and I've got LinkedIn.

So Facebook is Wellness Without Barriers.

That's my page.

LinkedIn is just Gemma Davies and all my links are there.

Addie and I, we go around stalking people and asking them to be on the show and buggin them and whatever, but.

And we encourage people all the time, you know, on the show a lot of times, you know, and saying if, you know, anybody that would like to come on and talk about, you know, either their disability or, you know, their endeavors to try to help the community.

And you reached out to us, so we appreciate that.

And, you know, anybody else will do the same for you.

If you want to come on, just get a hold of us.

So I think we'll let you go.

Thank you.

It's.

It's late.

Late on a Monday after evening where you are, so thank you for, you know, for coming on with us.

Appreciate it.

Loved your.

Your accent is delightful.

And that's my favorite.

Doug already knows London anywhere over there.

Like, my favorite because I used to like to go to visit my aunt, uncle.

I was like, I'm in a storybook.

Say whatever you want.

Like it?

Yeah.

Yeah.

Thank you very much for having me.

Love it.

Our pleasure.

Thank you.

Each week on Walk and Roll Live, we share honest and open stories of people living with a disability.

The surgeon who did my knee surgery.

This was again, emergency surgery in Fountain Valley.

And luck of the draw, I get Dr. Grant Robichaux.

And there was a surgeon out of Newport who he and his girlfriend were accused of drugging women and doing things to them.

And by August, the news of him being arrested had become public.

Join us weekly for another powerful episode, Walk and Roll Live.

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Subscribe to now from the Agyar professional training Studios, you're listening to Walk and Roll Live.

Yep.

Back with Walk and Roll Live.

And we've got a few final thoughts.

What do you say?

So the story is so fascinating.

Fascinating.

You know, I'm.

I'm fascinated by people, period.

But I'm also fascinated by, like, the human body and, like, what it's like, one little tick one way or the other, and things can be so different.

And like we said in the open.

Now that you've listened to the story, you can imagine.

I can't imagine just being given a pamphlet and, like, sent on your way, like, good, figure it out.

This thing's changing my life in incredible ways.

And I get a pamphlet.

You and I are coming kind of lucky in the sense that our diagnosis was, like, not common, but common.

Right.

And the fact that also we are the sufferer, not the person trying to figure it out.

Our parents got handed the hot potato and told, like, go.

We don't know different.

Yeah.

That didn't really hit me until I got older, you know, And I really.

Probably.

Mostly when I had a child, and I'm thinking, oh, my God.

I mean, to wake up one day in your two.

You know what, Two of your babies are paralyzed.

Yeah.

Geez.

I mean, I've never had to deal, like, you know, a broken bone here and there with my daughter, and that's it.

Yeah, exactly.

And you know how terrifying that was.

So I can't be.

I can't imagine, like, having a disorder that doesn't really.

Well, at the time, you know, she didn't know that there was support agencies and different things that she's now found out over time.

This is.

I. I believe, if I'm not wrong, that, you know, it's the beginning of COVID It's like, you know, it was more in the time where weird is happening everywhere, but giving you a packet and saying bye, like, at least we kind of know you.

And I can Google and say, okay, aging with polio, aging with cerebral palsy.

Like, you know, there's so much out there we kind of spoiled that we aren't, you know.

Well, nobody thinks that.

It's in our head, let's say it that way.

Right.

And I've heard that a lot.

I've heard that so many times from different friends.

I think you're wearing your belt too tight.

A doctor said that to somebody.

It's like, I don't wear a belt.

Person.

Yeah.

Yeah.

I mean, we.

That's a barrier that.

I mean, obviously, because changes, especially if you're, quote, unquote, like, typical, and then something happens, like you're already mentally so stretched.

Yeah.

Just for having a change.

My dad.

It took them, gosh, two or three years to diagnose him with Parkinson's.

Yeah.

You know, and that's.

That's fairly common.

You know, I don't say Parkinson's.

That.

Everybody knows what that is.

Yeah.

In my dad, you know, it was years and years of like, oh, this could be als.

It could be this and that and the other until they said, oh, you have more markers of, like, Ms. And then they did some other things and figured it out, but again, similar.

So I think it's so cool that she has changed her challenge into an organization that helps and found community.

And, like, I'm also proud of her because we know that it's very hard to, like, set limits.

Like how when she was saying, like, if it's not a good day to go to tea, she'll tell people.

Or like, she'll say, I only have energy for this long because we know you and I, like, we will suck it up until it's almost too late.

Yeah.

From that interview being like, okay.

I really tried to transition away from that, you know, my.

In my older age, now that I'm retired.

Yeah.

I get equal amounts of rest and, and going, going, going.

And bought you ball.

Yes.

Yeah.

And I, and I.

And I accept help a lot more now.

You know where you have to be.

Oh, no, I got it.

You know, if you're offering.

That's my phrase.

You're offering.

I'm taking.

Yeah.

You know, I admire that for her of, like, finding the way to keep her in the best shape the most often.

Right.

Because it sounds like it's kind of relapsing, remitting, and especially if you overdo it, it's going to be worse.

So, you know, the other thing I, I realized over the years, too, is that there are so many things out there.

It's amazing that any of us are healthy.

I know.

You know, crazy, right?

Hi, everybody could be on our show at some point because it's the only minority that you're going to join either by aging or accident or otherwise.

Yeah, yeah, yeah.

We should never suffer a guest law.

So in my.

In my ongoing quest to, you know, to.

To strengthen and, and fortify our.

Our resources page, I've added Kelly Brush foundation and also Able Bodied.

And we're in.

Kelly Brush is coming on.

We've got that schedule, so that'll be down here in a month or so.

Yeah.

And then Able Bodied, you'll see them on Instagram if you do a look.

And that's where we connected.

So they want to hear more about our resource page, first of all.

Okay.

But definitely going to invite them on to talk about what they do, too.

So.

Yeah.

Doug's, resource page is getting famous, people.

I like it.

Alrighty.

That's it.

Next week we have.

I try to write these things down before we come on the show and sometimes I fail.

If you notice that there, I just go to the calendar here.

There you go.

So the next week is the 12th, and that will be down here.

Arthur Martineau.

Yeah.

Arthur was fascinating.

Yeah.

Vacation, vacation, vacation gone wrong.

I'm going to give you.

That's it.

That's the tease.

And I met him at the.

It was a rolling rally.

It was called mostly tennis and some other sports.

Yeah.

So cool.

We'll meet him next week.

In the meantime, have a great time.

Have a great and safe.

Cinco de Mayo.

Yeah, I was gonna say Cinco de Mayo.

Don't eat too many tacos, even if they're cheap.

Yep.

And don't get too crazy.

All right, we'll see you next week.

Thank you for listening.

Thank you.

Thank you.

Thank you.

I'm your host, Doug Vincent with Addie Rich from the Agar Professional Training Studio has been Walk and roll Live Disability stories.

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