March 19, 2025 • 21 mins
Join Anna Lempriere, Wayfinder for the Cornwall Memory Cafe Network and disAbility Cornwall, as she interviews experts and people with lived experience to provide essential insights, advice, and support for carers and people living with dementia. In this episode, Anna welcomes Zoe Baxter, a valued member of the Young Onset Memory Café, a unique space for those diagnosed with dementia under 65. Together, they explore the challenges, experiences, and support available for individuals and families navigating young-onset dementia.
✨ This series is designed to be relaxed, inclusive, and welcoming—so sit back, listen in, and share with your friends.
📌 Don’t forget to like, subscribe, and turn on notifications to stay updated with our latest episodes!
Contact us via email at cmcn@disabilitycornwall.org.uk to find out more about the Young Onset Dementia Group
-
Please consider subscribing to our YouTube Channel! And if you want the audio-only version, please search for the podcast title on all major audio platforms including Spotify, Apple Podcasts & Amazon Music.
DISCOVER Voices is a brand-new podcast network that discusses life through the lens of people living with long-term health conditions or disabilities.
We welcome a variety of hosts all with their own podcast series, giving their own outlook and take on topics and discussions that are close to their heart. Our first podcast host is Dr Theo Blackmore, the residential researcher at disAbility Cornwall, a Disabled Peoples’ Organisation based in Hayle, Cornwall.
-
Discover Voices (c) 2024, a production by registered charity, disAbility Cornwall & Isles of Scilly.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Welcome one and all.
My name is Anna Lempriereand I am a wayfinder -
I work for the Cornwall Memory CafeNetwork,
supporting carers and peopleliving with dementia.
To access services, make referrals
and really help themfind a way to get more support.
(00:29):
And this is part of disability Cornwall
And we've decided to create this podcast
interviewing experts and peoplewith lived experience on dementia
to be ableto share all sorts of interesting
and informativeand supportive information.
(00:50):
So sit back and enjoy and also
share the podcast with your friends.
It's relaxed and inclusive and welcoming.
And thank you for listening.
I am your host
and Anna Lempriere and I am very excited
and honored to have Zoe Baxter with ustoday.
(01:11):
I met Zoe a few years ago,I think probably a couple of years
ago, through being a wayfinder.
So I was going into memory cafes across
West, fact, all of Cornwall at that time,and meeting
all sorts of interesting,people at the memory cafes.
And I think I met you there first. Zoe.
(01:33):
But but more recently, time has flown,and I think in the last 18 months,
disability Cornwall and,the Cornwall Memory Cafe network
have set up a young onset
memory cafe,which is very young and very new.
Just for listeners that might not know,
(01:54):
there's a difference between early onsetand I've had to learn this myself
and young onset and that young onset is
if you have a diagnosis of dementiaunder the age of 65
and it's a rare dementia,and it's a much more unknown dementia.
(02:15):
And that's how I've come to meet with Zoe.
Zoe and her partner Jeremycome to the young Onset Memory Cafe,
which is pretty much been goingfor about a year and a half, where we
we do things slightly differentthan the other memory cafes
in the main thing being that
most of the people are at least onegeneration
(02:37):
different to the memory cafes.
Which are excellent.
Except we what we recognizedis a lot of the people
living with young onset,fitter and, still living their lives
with children and all sorts of things,which we're going to find out about.
So I'm going to stop talkingand hand it over to you.
(02:59):
Zoe's thank you for your time.
That's okay.
And, I'll start with the first questionthen is, can you tell us
a little bit about your life, like,paint the picture of,
what you used to do for a livingand something of your life?
Wow. I'm
a teacher, and I loved being a teacher.
(03:21):
That was when I lived in London.
And when things were exciting,
And I was quite wild.
Yeah, that was good.
And then more recently,I was an elective home education
coordinator,but had to stop that due to ill health.
(03:41):
Claire.
Yeah, yeah.
And we're both Londoners.
I'm a Londoner as well.
And, you were telling me a little bitabout your work
that you worked with children that were,
really tricky.
Tricky children. Tricky children? Yeah.
Yeah, yeah,I had lots of lots of issues and,
(04:04):
yeah, were quite wildand difficult to manage.
And you worked with them. Supported them.
What sort of thingsdid you get up to then?
Well, it was kind of just
kind of managing their expectationsin many ways.
Yeah.
Wow. Okay. Okay.
So, what brought you to Cornwall?
(04:29):
What brought you this way?
Well, we were we were living in London,and Jeremy really wanted to get out.
Jeremy and my partnerreally wanted to get out of London,
and we had some friendsthat had moved from
London to Cornwall,so we just followed them.
Amazing. Yeah. Amazing.
(04:49):
And it was the best thing we've done,I think.
Yeah, I'd have been happyto stay in London,
but Jeremyreally wanted to get out of London.
He spent his sort of formative yearsliving in London
and didn't want to continue that.
And your whole life has changed.
I mean, you're livingnow in some just, aren't you? Yeah.
Which is just a very lovely place to live.
(05:13):
I feel kind of quite blessedthat we live in Saint Just.
Yeah,it's a really nice place to be awesome.
And you've got two children.
Yep. Yep.
They're, Yeah,they're they're doing their thing.
Doing their thing out there as well.
Thanks. Yeah.
That's wonderful. Wonderful.
(05:34):
And I know you said you've been telling methat you've got land as well.
You've got a little bit of land.
We have got some land.
Yeah, yeah. Which you.
Yeah.
Which is awesome. Yes.
All right.
So let me then ask you is
when did you,when did you first start to feel this.
(05:55):
You know, thisthis young onset of dementia.
When did you first start to feelthat something wasn't right or that
that not necessarilysomething wasn't right,
but there werechanges happening within you?
Yeah, I,
I think I felt it quite earlyon, actually.
I just realized that things weren't right.
(06:15):
There were things that I couldcouldn't do that I used to be able to do
before. Like,I'd get confused about things
and where we were goingand what we were doing.
And then I was that somethingprobably wasn't quite right.
And then, yeah, that was a yeah.
So just starting to feel likethings were getting mixed up.
(06:35):
Yeah yeah yeah yeah.
And so you just what,what was the process then.
Did you go to the doctor.You went to your doctor.
Well yeah, we went to the doctor.
And the first doctorwe saw just stood there and asked me
if I could dress myself.
Wow. Yeah.
And that was like, I was thinkingthis could possibly be right.
(06:58):
It. I didn't know what to do at all.
He just was quiet.
And that's how I could dress myself.
I couldn't get over that. Wow.
And then, did you manage tothen persuade your
your doctor, to do, any, any tests?
Did you sort ofhave to insist? Well, yeah.
(07:19):
And then,
yeah, there were some testsas there was lots of tests.
And actually the testsmake him more anxious.
I found thatall the tests made me more anxious
because those things I couldn't do.
But that was then just obviouslyindicative of what was what was going on.
Yeah. And who was it?
(07:41):
Where did you go for those tests and who
what sort of departmentor who was it that did those tests then?
Was it the doctor or didit was just like it was a psychologist.
Yeah. Who also didn't really understand.
Yeah. Wow.
And so do you do you mind asking
did that mind me asking did that mean
(08:04):
that you had to have a brain scanor that kind of thing?
I did go for some tests and things.
Yeah.
But it was quite minimal.
Yeah, yeah,
yeah,like they did the clock thing and I did it
well, so they said I was okay.
Okay.
Yeah.
(08:26):
And then saying, you okay,what happens then.
Then you just go away and think, well,I don't feel okay or what have you.
Then,
what happened then?
I think we looked into it more.
Really? Yeah.
Looked at what other options there were.
And there actually isn't that many optionsabout what what you can do
and what you can't do.
(08:47):
I think
I think we mainly just made ita past selves, and obviously
they have Jeremy,who was touring and lovely
and made sure that I understoodwhat was going on all the time.
So that was reallythat was good in that sense. But
from practitioners, not an awful lot. No.
(09:07):
So how long do you think it took from
you thinking,I don't feel like there's that.
I feel like there's something not right.
Yeah.
And the way that I'm respondingto life in certain situations
isn't how I used to respond. Yes.
So, so from sort of having those thoughtsand those discussions with yourself,
with Jeremy,to actually getting a diagnosis,
(09:30):
how long do you think that time in betweenwas for?
Really difficult?
I had horrible thoughts.
I thought I wasn't ever goingto see my children growing up. Wow.
And things like that.So that that was quite,
a, quite a dark placebecause I didn't know what to do.
So once you got the diagnosis,that's when you started to, to, to get
(09:55):
to feel those feelings.
Yes. Yeah.
The what was going to happen to you.
Yes. Yeah.
And to those around me like I was,you know, had thoughts
that I wouldn'tsee my kids grow up and things like that.
Gosh. Yeah.
That was quite tough.
And and did you get support with that.
(10:15):
How how is that unfolded thatactually I got some good support.
I got some counselingand I found it really tough don't
counselingbecause I think it's just tough.
Anyway, and that definitely helped.
And we were really quite luckythat the, counselor that I had,
the children also got,got some counseling from her as well,
(10:39):
so that that was really useful andthat the kids were really happy with it,
and it made them feel sort of betterabout the whole situation.
Yes. Yeah.
And was that linked to your GP service
and your primary dementia practitionerand all of that?
Yeah, that they made that happen for you.
Yes. Yeah.
And it did make a huge difference. Yeah.
(11:02):
Well, so I wonder what the difference was then.
So one of the things that we hear a lot
is, you know,I think there's an inherent fear
that people have with dementia.
You know, I think it's something
that people aren't very comfortabletalking about.
And this sort of inherent fear,
(11:25):
that you can't have a life that,
you know, you can't live,you know, your life is gone, it's ruined.
And I mean, from my perspective,you are totally.
And that's a testamentto living a well and happy life.
Thank you.
And can you say a little bit about that?
Can you say from in contrast, your fearwhen you started counseling around,
(11:50):
you know, oh my God, am I going to lose,you know, am I going to not be able
to watch my childrengrow up and all of that to feeling like,
actually, you're living a good life?
You say a bit more about that.
Yeah.
No, I actually do feel like I'mhaving a good life.
I'm happy.
I engage in things.
I socialize a lot, and I've.
(12:11):
I've felt definitely,
definitely in the last few years,what couple of years may be.
I've just felt like my old self.
I'm more confident.
Yeah. Wow.
Yeah.
And what do you think that is?
Do you think that sort of settling downand and almost
like coming to terms. Yes.
(12:33):
Yeah, definitely coming to terms.
And I think once you've sort of settled inand think,
you know, this is what it's like,then you have to make the most of it.
And so I'm absolutelymaking the most of it.
Yes. Yeah. Yes.
And living life to the full.
Yes. Definitely. Yeah.
Thank you.
Thank you.
So, I want to know as wellabout how long it actually took for you
(12:58):
from when you first realized to
when, you got your diagnosis.
Was that how long of a time did thattake for you to be told,
okay, this is this is,what's happening to your brain?
I'm not quite sure.
Did it feel like a long time or.
(13:20):
No. No. Oh, that's quite a long time.
Yeah, that's really good.
And,
what is.
Do you know what the diagnosis is?
Then talk to us a little bitabout your understanding of young onset.
For anybody that's listeningthat might have very
little knowledge about this.
(13:41):
Yeah.
Well so young onset is obviouslyfor people that are young.
And and I think it's
not very well understood.
Yeah.
Because people just think of
everybody being old don't they,
when they have outside or,you know, similar diagnosis.
So yeah.
(14:04):
So it was really quite scaryto start with.
But it's, it isn't anymorebecause it is just what it is.
And I've come to terms with it.
And, you know, there's lots of peoplethat I should thank really as well.
Probably like friends that took me to,when I had to go to visit
in different places, likejust for treatments and things like that.
(14:26):
So, I mean, I've been quite blessedin that sense that I've had a lot of
help and a lot of support.
And my main
support has been Jeremy, who has gently
pushed mea tiny bit out of my comfort zones,
which has been really goodand really useful,
and none of it would have happenedwithout him, bless his blessing.
(14:46):
And, so can you can you describe your life now?
So it certainly doesn't feel like it'slimited in any way.
Would you know what sort of thingsdo you get up to with in your life?
What do I get up to? My life.
I exercise quite a lot.
I take the dog out a lot.
I like swimming in the sea still, so I.
(15:08):
Yeah,I make the most of everything that I can.
Yeah.
In fact, today a friend just askedif I wanted to go for a swim, but.
Yeah, so how gorgeous.
And and so,I mean, when I was talking to you
the other day, you were saying, you know,you it's not like you can find your way
around, you know, and just you off,you know, you're you have independence.
(15:29):
You don't necessarilyneed a PA or anybody. No.
Not at the moment. You never know.Might happen in the future though.
But yeah, at the momentI'm, I'm yeah I'm independent.
Relatively independent. Yeah.
And you got your, partner Jeremy,
your family and your friends aroundas a support system, but you still.
Yeah.
(15:50):
Yeah.
So, if, if,
if we can think about you've got experts
listening to thisor somebody that maybe of just received
a diagnosis that is young, can you give any advice?
What would you, as somebodythat's got the lived experience
(16:11):
of this, this, young dementia?
What would you say?
I'd say don't hide away,which I've just remembered.
That is what I did initially.
Don't hide away and let people know
because people are actually niceand friendly and supportive.
(16:33):
Yeah.
Thank you.
And, so I think as well,
what I'm picking up there thenis potentially, and I know this through
going to, a course called Living
Well With dementia that a lot of the time.
And this isn't necessarily for peoplewith young onset, but a lot of the time
(16:55):
people don't.
People that have had the diagnosisdon't feel they don't want to accept it,
or they might go into denialor they might feel ashamed. Yes.
About it.
And is that what you were sort of sayinghappened at first or.
Yeah, I mean, at first I didn't know
how to talk to people about itbecause I didn't know what I was going to.
(17:15):
We know what to say, really,
because I don't think peoplewould have understood anyway.
Yeah, yeah, yeah.
And then howhow did you find that way through then?
What did you just test out on 1or 2 people or,
What did I do?
I think I just started
putting myself out theremore than than I had been previously.
(17:39):
So she said, you know,when I was really raw about it,
I wouldn't have wanted to go outand do anything with anybody.
But, you know, times have changedand now I do those things.
Yeah. And you find like,
you've got yourself backnow I do actually feel like that. Yes.
Yeah, yeah. Wow. I'm in a good place.
(18:00):
But it's taken a lot of peopleto get me into that good place.
I do want to sort of emphasize that. Yeah.
So maybe what's what would you say
to the experts because you've hada lot of sort of support around that.
Have you well around experts.
Well aroundyou know, like from the diagnosis saying
(18:24):
you've had counseling,you have that sort of support.
Is there anything that you could sayon that at anything,
that you feel, you love,
love people that
had the power to do something differently
or whether you want to sort ofsay that was incredible.
(18:46):
That's really helped. Anything like that.
I think,
well, definitely,my friends have helped to sort of
come and drag me out when I didn'twant to fit, really feel like going out.
And make sure that, I mean,
they always make sure that I'm included,even if it's,
you know, something I don't want to dowould be fine with that. And.
(19:07):
Yeah.
So, yeah, I feel I feel quite luckyabout the people that are around me, and,
and none of it would have happenedwithout all those people
sort of making sure that I'm includedand happy.
Really? Yeah. It's amazing. It's amazing.
So sort of understanding,I suppose that your life doesn't end.
(19:27):
It doesn't need to end.
No. Absolutely no.
I've got a lot more life left in me. Haha.
Brilliant, brilliant.
Yeah. Okay.
And what's it been like then?
Be interesting to hearwhat you sort of feel about what it's
been like joining the young onset groupand being part of that.
Has that been interesting, helpful?
(19:48):
What's that been like?
No, it's been it's been really useful.
Really useful.
And it's always good to be with,the people that get it, basically.
And you don't have to explain yourselfover and over again
because you just get it.So that's been real.
That's been incredibly useful. Yeah.
And that's just for me.
I mean, that's for Jeremy as well.He's found it.
(20:09):
I know he's found it really useful.
He's learnedquite a lot of think along the way.
Yeah. Yeah.
Amazing.
Any any final thoughts, any insight
about the journey that you've been on thatyou could share with the listeners?
I suppose if,
if you feel that something'snot right about what's happening to you,
(20:31):
I would just say go to a doctor
or to a practitionerand ask for some support.
And I think people are often
a bit scared about asking for support.
So I think that would be the big takeawayfrom me.
Yeah, yeah.
And how not to be afraid of it.
(20:51):
I'm not to be afraid ofasking for support and help,
because there's people out there
that do help, like the memory cafesand other things.
Yeah, yeah.
Thank you.
Zoe, it's been such a pleasure.
And, can really see how, you've,
you know, you've really grown from thatinitial diagnosis and just sort of
(21:13):
feeling like all the emotionsthat must come up and said,
that must come up and that you've really,
created a good quality life for yourself.
Yes, I'd say so, yeah.
Yeah, definitely amazing.
Thank you, thank you, thank you.
Then, stock.
(21:34):
Thank you for having me. Hey.
This video was produced by Discover
Voices, part of DisabilityCornwall and Isles of Scilly.
To check out all of our contentsimply search Discover Voices on YouTube.
Welcome one and all.
My name is Anna Lempriereand I am a wayfinder -
I work for the Cornwall Memory CafeNetwork,
supporting carers and peopleliving with dementia.
To access services, make referrals
and really help themfind a way to get more support.
(00:29):
And this is part of disability Cornwall
And we've decided to create this podcast
interviewing experts and peoplewith lived experience on dementia
to be ableto share all sorts of interesting
and informativeand supportive information.
(00:50):
So sit back and enjoy and also
share the podcast with your friends.
It's relaxed and inclusive and welcoming.
And thank you for listening.
I am your host
and Anna Lempriere and I am very excited
and honored to have Zoe Baxter with ustoday.
(01:11):
I met Zoe a few years ago,I think probably a couple of years
ago, through being a wayfinder.
So I was going into memory cafes across
West, fact, all of Cornwall at that time,and meeting
all sorts of interesting,people at the memory cafes.
And I think I met you there first. Zoe.
(01:33):
But but more recently, time has flown,and I think in the last 18 months,
disability Cornwall and,the Cornwall Memory Cafe network
have set up a young onset
memory cafe,which is very young and very new.
Just for listeners that might not know,
(01:54):
there's a difference between early onsetand I've had to learn this myself
and young onset and that young onset is
if you have a diagnosis of dementiaunder the age of 65
and it's a rare dementia,and it's a much more unknown dementia.
(02:15):
And that's how I've come to meet with Zoe.
Zoe and her partner Jeremycome to the young Onset Memory Cafe,
which is pretty much been goingfor about a year and a half, where we
we do things slightly differentthan the other memory cafes
in the main thing being that
most of the people are at least onegeneration
(02:37):
different to the memory cafes.
Which are excellent.
Except we what we recognizedis a lot of the people
living with young onset,fitter and, still living their lives
with children and all sorts of things,which we're going to find out about.
So I'm going to stop talkingand hand it over to you.
(02:59):
Zoe's thank you for your time.
That's okay.
And, I'll start with the first questionthen is, can you tell us
a little bit about your life, like,paint the picture of,
what you used to do for a livingand something of your life?
Wow. I'm
a teacher, and I loved being a teacher.
(03:21):
That was when I lived in London.
And when things were exciting,
And I was quite wild.
Yeah, that was good.
And then more recently,I was an elective home education
coordinator,but had to stop that due to ill health.
(03:41):
Claire.
Yeah, yeah.
And we're both Londoners.
I'm a Londoner as well.
And, you were telling me a little bitabout your work
that you worked with children that were,
really tricky.
Tricky children. Tricky children? Yeah.
Yeah, yeah,I had lots of lots of issues and,
(04:04):
yeah, were quite wildand difficult to manage.
And you worked with them. Supported them.
What sort of thingsdid you get up to then?
Well, it was kind of just
kind of managing their expectationsin many ways.
Yeah.
Wow. Okay. Okay.
So, what brought you to Cornwall?
(04:29):
What brought you this way?
Well, we were we were living in London,and Jeremy really wanted to get out.
Jeremy and my partnerreally wanted to get out of London,
and we had some friendsthat had moved from
London to Cornwall,so we just followed them.
Amazing. Yeah. Amazing.
(04:49):
And it was the best thing we've done,I think.
Yeah, I'd have been happyto stay in London,
but Jeremyreally wanted to get out of London.
He spent his sort of formative yearsliving in London
and didn't want to continue that.
And your whole life has changed.
I mean, you're livingnow in some just, aren't you? Yeah.
Which is just a very lovely place to live.
(05:13):
I feel kind of quite blessedthat we live in Saint Just.
Yeah,it's a really nice place to be awesome.
And you've got two children.
Yep. Yep.
They're, Yeah,they're they're doing their thing.
Doing their thing out there as well.
Thanks. Yeah.
That's wonderful. Wonderful.
(05:34):
And I know you said you've been telling methat you've got land as well.
You've got a little bit of land.
We have got some land.
Yeah, yeah. Which you.
Yeah.
Which is awesome. Yes.
All right.
So let me then ask you is
when did you,when did you first start to feel this.
(05:55):
You know, thisthis young onset of dementia.
When did you first start to feelthat something wasn't right or that
that not necessarilysomething wasn't right,
but there werechanges happening within you?
Yeah, I,
I think I felt it quite earlyon, actually.
I just realized that things weren't right.
(06:15):
There were things that I couldcouldn't do that I used to be able to do
before. Like,I'd get confused about things
and where we were goingand what we were doing.
And then I was that somethingprobably wasn't quite right.
And then, yeah, that was a yeah.
So just starting to feel likethings were getting mixed up.
(06:35):
Yeah yeah yeah yeah.
And so you just what,what was the process then.
Did you go to the doctor.You went to your doctor.
Well yeah, we went to the doctor.
And the first doctorwe saw just stood there and asked me
if I could dress myself.
Wow. Yeah.
And that was like, I was thinkingthis could possibly be right.
(06:58):
It. I didn't know what to do at all.
He just was quiet.
And that's how I could dress myself.
I couldn't get over that. Wow.
And then, did you manage tothen persuade your
your doctor, to do, any, any tests?
Did you sort ofhave to insist? Well, yeah.
(07:19):
And then,
yeah, there were some testsas there was lots of tests.
And actually the testsmake him more anxious.
I found thatall the tests made me more anxious
because those things I couldn't do.
But that was then just obviouslyindicative of what was what was going on.
Yeah. And who was it?
(07:41):
Where did you go for those tests and who
what sort of departmentor who was it that did those tests then?
Was it the doctor or didit was just like it was a psychologist.
Yeah. Who also didn't really understand.
Yeah. Wow.
And so do you do you mind asking
did that mind me asking did that mean
(08:04):
that you had to have a brain scanor that kind of thing?
I did go for some tests and things.
Yeah.
But it was quite minimal.
Yeah, yeah,
yeah,like they did the clock thing and I did it
well, so they said I was okay.
Okay.
Yeah.
(08:26):
And then saying, you okay,what happens then.
Then you just go away and think, well,I don't feel okay or what have you.
Then,
what happened then?
I think we looked into it more.
Really? Yeah.
Looked at what other options there were.
And there actually isn't that many optionsabout what what you can do
and what you can't do.
(08:47):
I think
I think we mainly just made ita past selves, and obviously
they have Jeremy,who was touring and lovely
and made sure that I understoodwhat was going on all the time.
So that was reallythat was good in that sense. But
from practitioners, not an awful lot. No.
(09:07):
So how long do you think it took from
you thinking,I don't feel like there's that.
I feel like there's something not right.
Yeah.
And the way that I'm respondingto life in certain situations
isn't how I used to respond. Yes.
So, so from sort of having those thoughtsand those discussions with yourself,
with Jeremy,to actually getting a diagnosis,
(09:30):
how long do you think that time in betweenwas for?
Really difficult?
I had horrible thoughts.
I thought I wasn't ever goingto see my children growing up. Wow.
And things like that.So that that was quite,
a, quite a dark placebecause I didn't know what to do.
So once you got the diagnosis,that's when you started to, to, to get
(09:55):
to feel those feelings.
Yes. Yeah.
The what was going to happen to you.
Yes. Yeah.
And to those around me like I was,you know, had thoughts
that I wouldn'tsee my kids grow up and things like that.
Gosh. Yeah.
That was quite tough.
And and did you get support with that.
(10:15):
How how is that unfolded thatactually I got some good support.
I got some counselingand I found it really tough don't
counselingbecause I think it's just tough.
Anyway, and that definitely helped.
And we were really quite luckythat the, counselor that I had,
the children also got,got some counseling from her as well,
(10:39):
so that that was really useful andthat the kids were really happy with it,
and it made them feel sort of betterabout the whole situation.
Yes. Yeah.
And was that linked to your GP service
and your primary dementia practitionerand all of that?
Yeah, that they made that happen for you.
Yes. Yeah.
And it did make a huge difference. Yeah.
(11:02):
Well, so I wonder what the difference was then.
So one of the things that we hear a lot
is, you know,I think there's an inherent fear
that people have with dementia.
You know, I think it's something
that people aren't very comfortabletalking about.
And this sort of inherent fear,
(11:25):
that you can't have a life that,
you know, you can't live,you know, your life is gone, it's ruined.
And I mean, from my perspective,you are totally.
And that's a testamentto living a well and happy life.
Thank you.
And can you say a little bit about that?
Can you say from in contrast, your fearwhen you started counseling around,
(11:50):
you know, oh my God, am I going to lose,you know, am I going to not be able
to watch my childrengrow up and all of that to feeling like,
actually, you're living a good life?
You say a bit more about that.
Yeah.
No, I actually do feel like I'mhaving a good life.
I'm happy.
I engage in things.
I socialize a lot, and I've.
(12:11):
I've felt definitely,
definitely in the last few years,what couple of years may be.
I've just felt like my old self.
I'm more confident.
Yeah. Wow.
Yeah.
And what do you think that is?
Do you think that sort of settling downand and almost
like coming to terms. Yes.
(12:33):
Yeah, definitely coming to terms.
And I think once you've sort of settled inand think,
you know, this is what it's like,then you have to make the most of it.
And so I'm absolutelymaking the most of it.
Yes. Yeah. Yes.
And living life to the full.
Yes. Definitely. Yeah.
Thank you.
Thank you.
So, I want to know as wellabout how long it actually took for you
(12:58):
from when you first realized to
when, you got your diagnosis.
Was that how long of a time did thattake for you to be told,
okay, this is this is,what's happening to your brain?
I'm not quite sure.
Did it feel like a long time or.
(13:20):
No. No. Oh, that's quite a long time.
Yeah, that's really good.
And,
what is.
Do you know what the diagnosis is?
Then talk to us a little bitabout your understanding of young onset.
For anybody that's listeningthat might have very
little knowledge about this.
(13:41):
Yeah.
Well so young onset is obviouslyfor people that are young.
And and I think it's
not very well understood.
Yeah.
Because people just think of
everybody being old don't they,
when they have outside or,you know, similar diagnosis.
So yeah.
(14:04):
So it was really quite scaryto start with.
But it's, it isn't anymorebecause it is just what it is.
And I've come to terms with it.
And, you know, there's lots of peoplethat I should thank really as well.
Probably like friends that took me to,when I had to go to visit
in different places, likejust for treatments and things like that.
(14:26):
So, I mean, I've been quite blessedin that sense that I've had a lot of
help and a lot of support.
And my main
support has been Jeremy, who has gently
pushed mea tiny bit out of my comfort zones,
which has been really goodand really useful,
and none of it would have happenedwithout him, bless his blessing.
(14:46):
And, so can you can you describe your life now?
So it certainly doesn't feel like it'slimited in any way.
Would you know what sort of thingsdo you get up to with in your life?
What do I get up to? My life.
I exercise quite a lot.
I take the dog out a lot.
I like swimming in the sea still, so I.
(15:08):
Yeah,I make the most of everything that I can.
Yeah.
In fact, today a friend just askedif I wanted to go for a swim, but.
Yeah, so how gorgeous.
And and so,I mean, when I was talking to you
the other day, you were saying, you know,you it's not like you can find your way
around, you know, and just you off,you know, you're you have independence.
(15:29):
You don't necessarilyneed a PA or anybody. No.
Not at the moment. You never know.Might happen in the future though.
But yeah, at the momentI'm, I'm yeah I'm independent.
Relatively independent. Yeah.
And you got your, partner Jeremy,
your family and your friends aroundas a support system, but you still.
Yeah.
(15:50):
Yeah.
So, if, if,
if we can think about you've got experts
listening to thisor somebody that maybe of just received
a diagnosis that is young, can you give any advice?
What would you, as somebodythat's got the lived experience
(16:11):
of this, this, young dementia?
What would you say?
I'd say don't hide away,which I've just remembered.
That is what I did initially.
Don't hide away and let people know
because people are actually niceand friendly and supportive.
(16:33):
Yeah.
Thank you.
And, so I think as well,
what I'm picking up there thenis potentially, and I know this through
going to, a course called Living
Well With dementia that a lot of the time.
And this isn't necessarily for peoplewith young onset, but a lot of the time
(16:55):
people don't.
People that have had the diagnosisdon't feel they don't want to accept it,
or they might go into denialor they might feel ashamed. Yes.
About it.
And is that what you were sort of sayinghappened at first or.
Yeah, I mean, at first I didn't know
how to talk to people about itbecause I didn't know what I was going to.
(17:15):
We know what to say, really,
because I don't think peoplewould have understood anyway.
Yeah, yeah, yeah.
And then howhow did you find that way through then?
What did you just test out on 1or 2 people or,
What did I do?
I think I just started
putting myself out theremore than than I had been previously.
(17:39):
So she said, you know,when I was really raw about it,
I wouldn't have wanted to go outand do anything with anybody.
But, you know, times have changedand now I do those things.
Yeah. And you find like,
you've got yourself backnow I do actually feel like that. Yes.
Yeah, yeah. Wow. I'm in a good place.
(18:00):
But it's taken a lot of peopleto get me into that good place.
I do want to sort of emphasize that. Yeah.
So maybe what's what would you say
to the experts because you've hada lot of sort of support around that.
Have you well around experts.
Well aroundyou know, like from the diagnosis saying
(18:24):
you've had counseling,you have that sort of support.
Is there anything that you could sayon that at anything,
that you feel, you love,
love people that
had the power to do something differently
or whether you want to sort ofsay that was incredible.
(18:46):
That's really helped. Anything like that.
I think,
well, definitely,my friends have helped to sort of
come and drag me out when I didn'twant to fit, really feel like going out.
And make sure that, I mean,
they always make sure that I'm included,even if it's,
you know, something I don't want to dowould be fine with that. And.
(19:07):
Yeah.
So, yeah, I feel I feel quite luckyabout the people that are around me, and,
and none of it would have happenedwithout all those people
sort of making sure that I'm includedand happy.
Really? Yeah. It's amazing. It's amazing.
So sort of understanding,I suppose that your life doesn't end.
(19:27):
It doesn't need to end.
No. Absolutely no.
I've got a lot more life left in me. Haha.
Brilliant, brilliant.
Yeah. Okay.
And what's it been like then?
Be interesting to hearwhat you sort of feel about what it's
been like joining the young onset groupand being part of that.
Has that been interesting, helpful?
(19:48):
What's that been like?
No, it's been it's been really useful.
Really useful.
And it's always good to be with,the people that get it, basically.
And you don't have to explain yourselfover and over again
because you just get it.So that's been real.
That's been incredibly useful. Yeah.
And that's just for me.
I mean, that's for Jeremy as well.He's found it.
(20:09):
I know he's found it really useful.
He's learnedquite a lot of think along the way.
Yeah. Yeah.
Amazing.
Any any final thoughts, any insight
about the journey that you've been on thatyou could share with the listeners?
I suppose if,
if you feel that something'snot right about what's happening to you,
(20:31):
I would just say go to a doctor
or to a practitionerand ask for some support.
And I think people are often
a bit scared about asking for support.
So I think that would be the big takeawayfrom me.
Yeah, yeah.
And how not to be afraid of it.
(20:51):
I'm not to be afraid ofasking for support and help,
because there's people out there
that do help, like the memory cafesand other things.
Yeah, yeah.
Thank you.
Zoe, it's been such a pleasure.
And, can really see how, you've,
you know, you've really grown from thatinitial diagnosis and just sort of
(21:13):
feeling like all the emotionsthat must come up and said,
that must come up and that you've really,
created a good quality life for yourself.
Yes, I'd say so, yeah.
Yeah, definitely amazing.
Thank you, thank you, thank you.
Then, stock.
(21:34):
Thank you for having me. Hey.
This video was produced by Discover
Voices, part of DisabilityCornwall and Isles of Scilly.
To check out all of our contentsimply search Discover Voices on YouTube.
Popular Podcasts
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.