April 2, 2026 • 63 mins
A New Zealand woman diagnosed with early-onset Parkinson’s disease has transformed a life-changing diagnosis into a remarkable journey of endurance, perspective and purpose, undertaking thousands of kilometres of long-distance walking across Europe.
Jennifer Andrewes, originally from Dunedin, first noticed symptoms more than a decade ago, when an unexplained tremor began affecting her ability to perform in public. Initially dismissed as nerves or anxiety, the condition gradually worsened, impacting her confidence before she sought medical advice.
After years of uncertainty, Andrewes was diagnosed with early-onset Parkinson’s by a neurologist, a moment she describes as confronting but not entirely surprising. Rather than focusing on the limitations of the condition, she adopted a pragmatic mindset, choosing to “keep on keeping on” and continue living life as fully as possible.
Her response to the diagnosis led to a significant shift in priorities. Andrewes reduced her workload and focused more on activities that brought her joy and supported her wellbeing, particularly walking. Research and global connections with others living with Parkinson’s reinforced the benefits of movement and lifestyle changes in managing symptoms.
What began as a practical way to manage her condition soon evolved into something far more ambitious. In 2022, Andrewes completed an 800-kilometre walk across France. Building on that achievement, she later undertook an even more demanding journey, walking more than 2,400 kilometres from Canterbury in the United Kingdom to Rome over nearly 100 days.
She says the experience not only improved her physical condition but also highlighted the mental and emotional benefits of sustained movement, routine and immersion in nature. “I don’t experience Parkinson’s in the same way when I’m walking long distances,” she said, noting the positive impact on both body and mind.
Andrewes has since documented her journey in a book, The Only Way Is Up, is aiming to challenge common perceptions of Parkinson’s as solely an “older person’s disease” and to offer hope to others facing similar diagnoses.
Her story underscores a broader message about resilience and mindset. Rather than allowing a diagnosis to define her future, Andrewes has chosen to reshape the narrative, focusing on what is still possible, rather than what may lie ahead.
The Only Way Is Up, on foot to Rome is available at https://myparallellives.com
For more information as well as support services for Parkinsons visit https://www.parkinsons.org.nz/
See omnystudio.com/listener for privacy information.
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Episode Transcript
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Speaker 1 (00:08):
You're listening to a podcast from News Talk SEDB. Follow
this and our wide range of podcasts now on iHeartRadio.
Speaker 2 (00:20):
Greetings and welcome. I'm Hamish Williams and you're listening to
the podcast version of The Nutters Club, a radio show
about mental health broadcast weekly on news Talk ZEDB. Each
week we talk with people about their mental health experiences
and the hope that it might help you with your own.
The show is broadcast live on Sunday nights on News
(00:42):
Talk SEDB right across New Zealand and around the world.
Our guest this week is Jennifer Andrews, who turned early
on set Parkinson's into a mission, walking thousands of kilometers
across Europe, including a two thousand, four hundred kilometer pilgrimage
from the UK to Rome. Most importantly, she says it's
(01:06):
not just about physical endurance, it was about her mindset.
She shares how she developed hers Let us know what
you think, as well as what you learn from our
chat with Jennifer on any of our social media platforms.
Just search for the Nutters Club in zied and come
join over one hundred and forty one thousand fallow nutters.
(01:27):
Let's get into this week's episode. Jennifer, thank you so
much for being here, Thank you very much for having me.
So look, tell us a little bit about yourself. We're
going to get to the walking part at some point.
But you know, where were you born? Where did you
grow up?
Speaker 3 (01:41):
Yeah? So I was born in bread and Dunedin on
the mainland. Yeah, grew up down there, pretty much spent
my whole early years down there and through school and university.
Speaker 2 (01:51):
Whereabouts in Dnedin did you grow up?
Speaker 3 (01:53):
Grew up just on It's called city Rise, just above
the city above Knox Church. Basically, oh yeah, Well easy
to walk everywhere.
Speaker 2 (02:01):
Yeah yeah, yeah, and you get you get pretty fit
in Toneden with the hills, walking up and down, don't you.
Speaker 3 (02:05):
Clay of Hills hill training from earlier on? There yet
walking everywhere?
Speaker 2 (02:09):
So which high school were you?
Speaker 3 (02:10):
Indoneedia Logan Park High School.
Speaker 2 (02:12):
Logan Park otherwise known as Bogan Park. Maybe I've I've
heard a few, but a great a great school right
there by the university.
Speaker 3 (02:21):
I was awesome. Yeah.
Speaker 2 (02:22):
And then what did you study at UNI?
Speaker 3 (02:23):
And then studied French and history?
Speaker 2 (02:25):
French in history? What was the plan with French and history?
Speaker 3 (02:28):
Well, I grew up in a household where French was
part of the fabric. My father was at the university
as director of the language learning Center at Otago, so
he had sabbaticals every sort of six or seven years,
so you know, we'd had the privilege really of spending
time in France. And yeah, so French was kind of
(02:49):
an obvious but I suppose it was partly rebellious. You know.
It's like the family. You know, Dad expected us to
probably you know, do French, and you know that happened.
But I was quite keen to back my own way
as well, you know. So yes, it did history, which
was an interesting choice because I had actually almost failed
that in school stuff as it was back then. So yeah, I.
Speaker 2 (03:11):
Thought you'd give it a crack at the academic level.
So you graduated, you finished that, and what was the
plan from there?
Speaker 3 (03:20):
Well, I just kind of made it up as it
went along. You know. I always envied my sister, who
had like a clear career path mapped out that she
wanted to do, was quite ambitious, and I was more spontaneous.
It's just like, oh that's cool, you know, get on
and do that. That sounded interesting. So I had a
few ideas. When I finished university, I wanted to one
(03:40):
idea is I wanted to go into the Foreign Service.
So I tried out for that and I was actually
pretty hopeless, was pretty pretty naive, and I thought I
wouldn't mind being a journalist, but yeah, I didn't. Sort
of I thought I probably better have some life experience
before I went straight into that. So yeah, I ended
up going and spending a year in France teaching English
(04:04):
in a high school on a French government scholarship.
Speaker 2 (04:07):
Well, I mean you had to agree, and friendship sort
of makes sense. Did you teach some history while you
were there as well?
Speaker 3 (04:12):
Try to? Well, you go a little bit of history
about New Zealand, you know, because you're going. I actually
I went to Dunkirk to teach, which was not my
first choice, but you got posted there and actually it
was fantastic. Met some great people there, and yeah, but
they didn't know much about New Zealand. So yeah, so
(04:34):
actually made it a great friendship with a history geography
teacher who I'm still in touch with, And yeah, did
some did some history teaching, a bit of geography teaching
about New Zealand, and some of his.
Speaker 2 (04:46):
Classes wonderful and so where did they How long did
this take you for? You know, how many years were
you doing that?
Speaker 4 (04:52):
That's right?
Speaker 3 (04:52):
Yeah, just a year, just well nine months. Yeah, so
over pretty quickly. And I think, I mean that was
when I got into walking. Actually was when I landed
there pretty green and didn't know anyone, and and thought,
you know, how can I what can I do That's
going to get me to meet locals and see a
(05:15):
bit of the countryside. And you know, I didn't have
much money, so I had to be free. And yeah,
I met someone who was part of the local walking
clubon I thort ovel. That's genius. I can put one
foot in front of the other probably, And yeah, so
pretty much most weekends we were out and about and yeah,
I discovered the joy of that then.
Speaker 2 (05:34):
And so a great way to see the French country side.
Was it mostly that you were exploring?
Speaker 3 (05:40):
Yeah, I mean and mostly flat lands around there?
Speaker 2 (05:44):
Yeah great, I mean that makes right.
Speaker 3 (05:47):
You know, the odd hill, but yeah, it was. It
was a great way to get out and see all
of that countryside around Dunkirk and the north there into
Belgium or the borders with area with Belgium, Flanders fields,
you know, which are so emotive for you know, including
for New Zealand involvement in the Wars. So yeah, so
(06:08):
it was great.
Speaker 2 (06:10):
And I think, you know, once again I'm feeling that
that vein of history coming back through as well, right, yeah, I.
Speaker 3 (06:15):
Think so, yeah, there's definitely an element of that.
Speaker 2 (06:19):
So he came back to New Zealand after that.
Speaker 3 (06:21):
Yeah, So I came back to New Zealand pretty much
with literally well actually I had zero dollars. So my
dad came over. He had some work to do over there,
and it's it aligned with when I was due to
come back. So we actually flew back into New Zealand
together on the same flight into christ Church and then
he was going south to don Edin and I was
(06:42):
going north to Wellington to meet up with my then
boyfriend now husband. And yeah, I pretty much just maxed
out on my entire mega budget. I thought, you know,
damn it, like I'm in France, who knows when I'm
coming back. I just spent every dollar that I had.
And so on the plane on the way back, I
kind of thought, crumbs, I can't actually arrive on the
(07:05):
boyfriend's doorstep, to be fair, with zero do So I
said to my dad on the plane. I said, Dad,
could you would you mind lending me fifty dollars so
that you know, I could so pair play. He gave
me fifty dollars and I arrived in Wellington with fifty dollars. Yeah,
and then got a job.
Speaker 2 (07:26):
So fifty dollars was the catalyst to get you going?
Speaker 3 (07:29):
Yeah?
Speaker 2 (07:29):
Yeah, right? And what did the job look like? Yeah?
Speaker 3 (07:32):
So I landed a great job. I had a student
gig when I was at a targo working for the
Dunedin Visitor Center and loved at you know, it was
a great use of my languages and interest in tourism
and in the sites and things, and so yeah. When
I landed back in Wellington, I did some rounds of
(07:55):
likely places to work, including the Wellington Visitor Center, and yeah,
basically left my CV on a couple of people's desks
and managed to talk my way into a gigas the
manager of the Wellington Visitors Center. That's not bad, which
was pretty I was pretty stoked about. That was pretty cool.
Speaker 2 (08:14):
How long ago was this?
Speaker 3 (08:15):
That was ninety six? Oh wow, nineteen ninety six, ninety seven.
Speaker 2 (08:21):
You would have been there for the Wellington Renaissance. The
absolutely positively Wellington to Papa.
Speaker 3 (08:28):
Yeah, I lost, like, you know, a couple of the
staff to go work down there as guides. So it
was a very exciting time. Yeah, I loved it. Yeah,
but then that, yeah, that kind of came to close
after a couple of years. I guess I got to thinking, well,
you know, am I going to do this for like
the rest of my life or you know, customer services?
(08:49):
You know, it's hard even though it's fun, sure, And
I thought, actually, I really I need to get into
something that's kind of you know, going to take me
further and it's closer to my degree maybe. So yeah,
so what did that look like? So I ended up
working for Winston?
Speaker 2 (09:05):
Yeah you worked for Wennie?
Speaker 3 (09:06):
Yeah I did.
Speaker 4 (09:07):
Yeah.
Speaker 3 (09:08):
The first Yeah, like a lowly job as a as
a correspondence writer basically you know, receiving all his mail and.
Speaker 2 (09:19):
Was it was it lots of fan mail?
Speaker 3 (09:21):
Lots of fan mail?
Speaker 4 (09:22):
Yeah?
Speaker 2 (09:23):
Did Winston get fan mail?
Speaker 3 (09:24):
He got the occasional fan mail, Okay, he got he
got written to about all sorts of things, right, I'm
sure colitics and there are themes and a lot of that.
So my job was to kind of you know, open
them all up and and theme the stuff and do
some first drafts for him him to sign.
Speaker 2 (09:41):
Yeah, and so this this sort of led you into
a sort of comms sort of career from there.
Speaker 3 (09:46):
It did, actually because I that was just before the
nineteen ninety nine election, right yeah, when everything you know
ended up going. But it was full on and and
so it was all hands to the pump and and
you know, I mean they had a they had a
comms person, they had a media guy, but you know,
(10:08):
they needed help basically with that work and a pre
election mode. And so I just said, well I can
I can do that, and I can help write like
publicity material, and I can help do desktop publishing. It
was the very early days of desktop publishing. So I
taught myself to do that and helped with like you know,
press releases and things, and basically bluffed my way into
(10:32):
coms from there.
Speaker 2 (10:34):
Fantastic. So this this of you, you obviously got married
at some point there, because you've you know, so that
that happened.
Speaker 3 (10:41):
Yep, that happened. Yet the boyfriend became the husband.
Speaker 2 (10:44):
Yeah, okay, well that's that's a reasonably good trajectory. Yeah, Okay,
So it was ninety eight and then you know, fast
forward sort of, you know, ten years from there, and
you know you've you've established yourself really well. So you know,
we're talking about twenty ten, but in twenty ten you
noticed something a little bit different was going on.
Speaker 3 (11:02):
Yeah, that's right. So I mean by that stage, we
we'd actually, I mean we're initially been in Wellington for
a while and then we decided that we wanted to
spend some time overseas, but we had a mortgage, so
it was like, well, we're really one of us needs
to have a job to go to and we decided
which of one of us gets a job first, that's
(11:25):
where we'll go. And so, yeah, my husband, Stephen, he
got a job in Cardiff for the University Hospital of
Wales and public left to public Health Service in Wales,
and so we moved to Cardiff and we were there.
We were there for about six years, and yeah, so
I got involved in life over there and had the
(11:46):
first two boys there and yeah, joined a local church
choir and so I've always sung in choirs. And then
year towards the end of that time and when we
came back to New Zealand from there, I just noticed
that I had this weird thing where I, although it
(12:07):
was really used to standing up and singing in front
of people, all of a sudden I started shaking when
I was holding the music, and it was really distracting,
and I tried to manage it for a while, but
it got to the point where I was like, actually,
I'm going to have to stop singing because you know,
(12:28):
it's hugely distracting for the audience, let alone for me,
you know, to actually be standing up there and wobbling.
So yeah, So so it was about it was about
that time, maybe two thousand and eight, twenty ten, that
I started to notice that and think there's something there's
something funny, but I didn't know what that was.
Speaker 2 (12:51):
The hand started shaking about somewhere between two thousand and
eight twenty ten. What did you remity yourself with to
think about this singing? You obviously, you know, knew it
was distracting when you were doing singing, But what was
the explanation in your mind as to what was going on?
Speaker 3 (13:08):
Yeah? I really didn't know what was going on. I
mean I thought I thought I must have some kind
of like nerves or anxiety, even though I never had
that to that extent, you know, you get a natural
amount of nerves. I've always been, you know, liked performance.
I used to do acting and be involved in productions
at school and university, up on a stage performing, you know,
(13:33):
no problem at all. And then so it was it
was a bit weird, but I thought, I guess it
just saw, well, I must, I must. I must have
acquired some extra nerves somewhere or something. And so for
the first while, I thought, well, this is ridiculous. You know,
put your big girl pants on and just manage it.
But that became harder to do.
Speaker 2 (13:55):
So how did things change over the next few years
with what you know, it was just something that had
become a little bit strecting.
Speaker 3 (14:03):
Yeah. Well, the first thing I did was I stopped
doing what I liked do because I could, I felt
like I couldn't do it, and and it was it
was easiest to just stop doing it. And then you know,
and that way, you know, I could kind of ignore
what was what was going on, I guess, And uh, yeah,
(14:26):
the first main thing was the thing. And when I
gave that up for several years, I didn't really experience
it anywhere else. Yeah, So, I mean then I started
to notice in the workplace, I suppose reasonably early on
around that time that, yeah, if I had to stand
up and do like a farewell speech or something like that,
(14:48):
you know, I would try and do it without notes
because you know, I couldn't. I couldn't visibly hold the
piece of notes without shaking, and that was too obvious
to people. So you know, so there was a long
period of that sort of that sort of thing going on.
Speaker 2 (15:08):
So you're just sort of self correcting, and and did
did the idea of not knowing what was causing this?
Did that grow over time?
Speaker 3 (15:17):
Yet did the first the first then the first time
when I really noticed something was seriously a miss was
when I started a new job in twenty seventeen. And
it was a fairly demanding job. It wasn't dis similar
to roles I'd had in the past, but it was
for a bigger organization, you know, in a bigger team,
(15:41):
responsible for a bigger scope of work. And and I'd
come back to it from a period of time overseas
not working, you know, writing running a BMB, so it
was you know, sort of back into the into the
full time workspace. And yeah, and I had this shake,
and it presented itself in you know, normal work scenarios,
(16:06):
but in public where I had to stand up in
front of people, you know, whose opinion about me mattered reputationally, professionally,
and people thought I was nervous and I knew I wasn't,
and you know, how do you explain that when you
can't even explain it to yourself? And I just felt
bad about it, you know, I felt embarrassed about it. It
(16:28):
was affecting my sense of self and my self confidence,
and I thought, I've got to I've got to do
something about that.
Speaker 2 (16:37):
So what did you do?
Speaker 4 (16:38):
So?
Speaker 3 (16:39):
I went to the GP was the first thing. I
sighted myself up. Well I'm not really I don't like
going and doing anything medical, but yeah, sighted myself up,
went to the chaps and got this shake. I don't
know what it is. It's a bit weird, and yeah,
I know. She you know, I was pretty young at
(16:59):
that stage. I s both early forties and you know,
fit well and otherwise healthy. And so she said, look,
that happens from time to time, could be all sorts
of things. Take some better blockers. I'll give you a
prescription and you take one of those when you need
to do anything you know, that requires you to perform,
(17:21):
and that'll just mask it. So I did that.
Speaker 2 (17:24):
What happened.
Speaker 3 (17:26):
Yeah, So I took those irregularly from time to time
when I needed them, and initially I felt like that
was working well and I thought, oh, great, that's covered it.
And then I suppose over the course of a year,
I had to acknowledge myself that I was probably taking
those beta blockers more often than not, and more often
(17:47):
not they weren't really working. So yeah, at that point,
about a further year in, I realized there was something
else going on. And I still I sat on that
myself for probably the best part of another year.
Speaker 2 (18:10):
Before. How did that make you feel? You know, when
you were sitting on it, Talk to me about that,
that kind of feeling. I mean, was it something that
kept you up at night or just was sort of
niggling you?
Speaker 3 (18:20):
Yeah, kind of. I mean I wasn't really losing sleep
over it, but I was always conscious of it, and
I was most conscious of it, of course, when I
had to hit something coming up that was you know,
that had a bit of pressure around it, or that
you know, a bit a bit of demand, a bit
of stress, and that would make it worse, right, because
(18:40):
I was thinking about it. The more I thought about it,
the worse it was, and the worse it presented itself.
Speaker 2 (18:45):
So just like, damn it, I hope that the thing
doesn't happen when I got I've got this meeting, I've
got this presentation.
Speaker 3 (18:50):
Exactly, I've got to have this really important conversation with
the chief executive or a really difficult conversation with a
staff member. And yeah, and i'd be you know, you'd
be preparing for that. Well, I was preparing for it,
and you know, kind of seemed like all of the
worry was accentuated.
Speaker 2 (19:08):
So a year goes by and things aren't getting better.
If anything, it sounds like they're getting worse. So you
needed to do something else.
Speaker 3 (19:16):
Yeah, So we went back to the GP finally, and
I think i'd had a conversation with my husband with
Stephen and said, look, actually I think there's something not
quite right here. So but you know, I don't think
either of us really expected it to be anything serious.
So we're back to the GP and I, yeah, but
(19:38):
I think I'd already quietly thought in my brain about
what it might be, even though I didn't want to
really voice that. So I went to the GP and explained,
and I just remember she looked at me and I
looked at her, and neither of us said the P word,
but both of us, I think, were clearly thinking the
(19:58):
P word as in Parkinson's. And she gave me she said, look,
I'm going to give you a referral to neurologist. And and
of course, you know, then you wait with baited breath
to get that appointment with the neurologist. And I, yeah,
I think I got one relatively quickly, actually within maybe
six months or so. Yeah. So that so the neurologist
(20:23):
was the next step.
Speaker 2 (20:24):
Is that quirk? Six months?
Speaker 3 (20:27):
Yeah, I feel like that's pretty easy quick.
Speaker 2 (20:31):
All right, So you had this meeting and it was
confirmed that it was Parkington.
Speaker 3 (20:35):
Yeah. So so I went in and you know, and
I was and I was young and again fat, and
I think, you know, for very reasonable reasons that the
neurologist had prioritized his time and thought, you know, well,
this won't be anything to see here. So they asked
me if I was happy, if you know, a couple
of interns could could be there and I and do
(20:57):
their initial observation. I said, yeah, that's sign, so bless them.
There's two two lovely young medical students, you know, diligently
did all of the assessment that they do when they're
looking for such things over the course of two hours,
and I could kind of tell that they'd found something.
(21:20):
And then the neurologists, who you know, very experienced and lovely,
breezed in, you know, in the last five minutes, I think,
prepared to you know, see nothing there. And I remember
he said to them, he breathed, and he said, wow,
he said in front of me. You know, so I
take it you haven't found anything, or words to that effect,
and I could see the looks on their faces as
(21:42):
they were trying to figure out how to tell him,
you know, actually we have. Yeah. So he then proceeded
to do in five minutes what they'd taken two hours
to do and and yeah, basically confirmed. He said, oh, yeah,
you've got early onset Parkinson's.
Speaker 2 (22:01):
When you get told that you have Parkinson's, you know,
early on set Parkinson's was the diagnosis. What was your reaction.
Speaker 3 (22:10):
Yeah, I'm not gonna lie. It was quite confronting, but yeah,
but I'm quite a pragmatic person and I did know,
you know, I kind of knew, and so in that sense,
it wasn't a surprise to me what he had said,
So it didn't really I don't know, I just thought, oh, yeah,
(22:31):
that makes sense. And I suppose there's an element of
like just hid in the sand in there as well,
you know, I was. I was undoubtedly in denial, though
I wouldn't have called it that. Uh, you know, I
just I guess it was just like, right, okay then,
and I probably wasn't taking too much and at that point,
(22:54):
but yeah, out the door I went. And I mean,
Stephen hadn't even come to the appointment because you know,
we weren't really I don't I mean, I don't think
we were really expecting, you know, anything significant. And in hindsight,
you know, kind of I suppose it was significant, but
I you know, even now, I don't really think of
(23:14):
it that way, because yeah, I suppose mainly because I, yeah,
I already actually knew, so, you know, to some extent,
I'd already been processing up to that point of actually
getting to that diagnosis. That was the end of a
long period for me of living with symptoms and processing
(23:36):
what that was likely to be.
Speaker 2 (23:39):
So was there a feeling of relief then for the confirmation.
Speaker 3 (23:42):
In some ways in the sense that yeah, okay, I
can stop in a weird way, I can stop worrying
about that, because that's what that is. Having said that,
there is an awful lot of uncertainty around it. Diagnosis
is clinical, so you know, yeah, you know, you can
do an assessment and when you know what you're looking for,
as neurologists do, you know, you can have a pretty
(24:03):
good guestimate, but you then have to go through a
process of all other things out through a whole bunch
of tests that you can do for other things, you know,
like a brain tumor or anything obvious like that, and
also seeing how it progresses, and so you know, further
further appointments, you know, another four months, another four months,
(24:26):
you know, a year to just see, yeah, what the
progression is like, to confirm that, and then ultimately medication
and in a funny way, you know, if the medication works, well,
that's yeah, nail in the coffin sealed. Yeah, that's what
you've got because the medication works.
Speaker 2 (24:48):
With all of the practical stuff, though there's also now
the reality that your life is probably going to change
and coming to understand what that's going to look like,
not just for you, but you know, for Steve and
your husband, for you know, for your kids, for your family,
for your work. So when did you start actually thinking
(25:09):
about that sort of stuff? When did that start to
come into the picture, the.
Speaker 3 (25:13):
Reality of it all. Yeah, not immediately. And you know
you probably laugh at this, but maybe not even now.
Like I just I just don't want to deal with it,
you know, it's just like, actually, what does any one
of us want to do? But just carry on carrying on,
like you know, that's stuff for another day. I mean,
I can remember quite early on one of my sons
(25:36):
said to me, Mum, wyat you more angry? And I
thought that's really interesting. I thought, well, I because I
am a little angry. But like, but I but I've
never really vocalized that, certainly, not externally and not really
even to myself. It's just it sits there as a well,
this is not great, and I'd rather this was not
(25:58):
happening to me. So I'll just set that aside and
carry on doing what I can do and what I
want to do. I mean, there's thing is, Yeah, the
neurologists probably said a lot of things to me in
that initial meeting. But the one thing I remember is
that he told me that I might have five able
(26:19):
bodied years. And he probably told me a whole lot
of other things around that, but that was what stuck
in my brain. And what I did with that was go, no,
I'm going to have more than that. I want more
than that, and I don't believe that, and I won't
have that. So I suppose from the very beginning, I
just set out quietly to just keep on keeping on
(26:42):
for as long as I possibly could and see what happens.
Speaker 2 (26:47):
So two things. First of all, what has changed? And then,
you know, you talk about the keeping on keeping on?
What does that look like?
Speaker 4 (26:55):
You know?
Speaker 2 (26:55):
Has it just been business as usual for you? Ordered
Have your priorities in life changed with this diagnosis? Yeah?
Speaker 3 (27:02):
I think inevitably my priorities in life have definitely changed.
You're not not in really substantial ways. I think my
fundamental values and my core interests in my things that
I want to do are still the same. But I
have just been more focused about spending more time on
(27:24):
the ones that I want to do more of than
the ones that I want to do less of. I mean, yeah,
like way back even before I knew I had anything.
I am. At one point when I was going through
a phase of setting long term plans and goals, as
you do in that sort of thing, because you think
that's important, I set myself this snappy goal to work less,
(27:47):
travel more, But actually I didn't really do anything about
it apart from, you know, just traveling more on the
course of work in some ways. And so yes, so
I suppose what I've done since the diagnosis, over the
course of a fair period of time is just, yeah,
(28:09):
spend less time on the work, on the on the
paid work, and more time doing the things that bring
me joy and that do me good, you know, mentally
and physically.
Speaker 2 (28:25):
And and some of those things. You know, what what
if some of those things look like and what you know,
what have been the new priorities post diagnosis week.
Speaker 3 (28:32):
Yeah, well, walking is the obvious one, is the big one.
And you know, I'd always walked everywhere, always light walking,
you know, done a few of the great walks in
New Zealand, lots of bushwalks growing up, you know, just
walked everywhere in the course of but I'd never really
done you know, substantial sort of purpose driven walks. I
(28:57):
joined the walking club. I'd enjoyed that. I did a
bit more of that more recently in our time in France,
but just sort of socially. And yeah, then I guess
when I had this diagnosis, I did go out and
do a whole bunch of reading, you know, as you do. Right,
what can I find out about this?
Speaker 2 (29:17):
Yeah?
Speaker 3 (29:18):
Looking for people like me? Right like? Because because the
prevailing view I had, which is probably what most people
think when they think of Parkinson's as oh, that's an
old person's disease. You know, that's you know, do I
say it for old old men? You know, it's not
for young, active women like me. And so what that
meant was, yeah, that actually when I looked at the
(29:41):
narrative and the bump, you know, the information available, certainly
in New Zealand, it was mostly directed at, you know,
people who were in that category at an older stage
of life. Most of the activities for people with Parkinson's
held in rest homes, you know, and that wasn't of
(30:02):
interest to me. So so I went looking for people
like me, thinking there must be I can't be alone
in this, right, be people like man. It was really
hard to find them in New Zealand. So I went
online on Twitter mostly as it was in the day,
and I found my people in the UK and Europe
and around the world. I was like, wow, there are
(30:24):
all these people like me and younger than me, and women,
so many women, so many young women. As it just
flabbergasted me. And they were living, they were living with
the condition, and they were certainly living this condition longer
than five years, and it was validating and I thought, yeah,
you know, I've got a life like, this is not
(30:46):
a disease. It's going to kill me tomorrow or next
week or next month, you know, or even in the
next five years. So let's just get on with it.
Speaker 2 (30:54):
So when you found your community online in you know,
it was that sense of actually being given some hope
that this isn't it. Well, you know, sorry to tell you, Jen,
it's five years and you're done.
Speaker 3 (31:06):
Yeah, well it completely changes in the narrative, right, and
the narrative changes the way that you think about it
so important, you know, and I as a comms person,
I thought, wow, that's really that's a really personal lesson.
Speaker 4 (31:18):
You know.
Speaker 3 (31:19):
It's really it matters how you get that message across,
because it matters how it's received and what you do
with that. So, I mean, the one thing that I
have done with that in particular is that often it's
referred to or usually it's referred to as Parkinson's disease.
I like to refer to it as a condition that
(31:39):
I have, not because that changes the diagnosis, not because
that changes the outcome, but it changes the way I
think about it and therefore the way I manage it.
So I prefer to think of it as something that
I can manage, like diabetes, because I have to live
with it, you know, and I do that in a
range of ways, including medication and lifestyle, including walking. And
(32:02):
you know, that's quite different from from being told that
you have a disease that's in terrible that they can't
do anything about that you know, will maybe disable you
in five years time.
Speaker 2 (32:13):
So you changed the story that you were telling yourself first, yes,
and then make get your reality?
Speaker 3 (32:19):
Yeah? Yeah, Because I think, like with anything that I've experienced,
I realized that I needed to understand and accept what
it meant for me before I could feel that I
could talk to other people about it.
Speaker 2 (32:34):
Carlo, I wanted to bring you in here is the
idea that when we get a diagnosis regardless of what
it is. But you know, especially when someone says to you,
you're not going to be that mobile in five years time,
I mean, it's pretty confronting, right Well, yeah, absolutely.
Speaker 5 (32:52):
And it's a bit shocking. I guess The thing is, though,
is that I mean, actually, we were talking about this
before we came on here, Parkinson's in particular, and actually,
my understanding is a lot of the neurological conditions are
like this are actually very individualized, and a lot of
doctors these days, and even with you know, diseases that
(33:13):
we might expect them, things like cancer, are very reluctant
to give any kind of timeline to people because the
problem with it is that it can become self fulfilling,
because what it does is it leads to people feeling like, oh, well,
you know, I might give up then, or you know,
after four years, you might give up and start feeling like, well,
my time's nearly up, as opposed to actually what And
(33:33):
I think language is really important and you know, a
lot of times now we talk about this idea of
living with a condition, living with Parkinson's or living with
other diagnoses, and recognizing that actually we can actually do
a lot for people with medication and treatments, and actually
we can also do a lot with support. I mean
(33:54):
I liked you keeping on keeping on. I think that's perfect, right.
I mean, every day you're waking up and you're living
with this condition, you're managing the condition, but actually every
day you can still live your life in a way
that might be different than you did ten years ago,
but it is still alive. And I mean there's the
thing about denial, right, Like, I mean we sort of
touched on that a little bit. I mean, it's possible
(34:18):
it denies one of those things. I think it's almost
a bit of a myth. No one goes into complete denial, right,
People might briefly have periods where they don't want to
know something or don't want to engage with something, And
certainly early on with your symptoms, that was understandable, right.
But actually when you talk about no, I'm just not
going to have that, I think, No, that's not denial,
that's actually just coping, that's actually deciding, as you said, Hamish,
(34:39):
how I want to write the story for myself.
Speaker 2 (34:42):
And it also seems particularly.
Speaker 5 (34:45):
Pertinent really with Parkinson's that a lot of the way
you talk about it is just keeping on going because
one of the difficulties with Pakinson is actually movement, isn't it.
So you need to keep moving?
Speaker 3 (34:55):
Yeah, you do, literally, yeah, yeah, yeah, absolutely, yeah, And
you're right and you know, undoubtedly And I may have
even asked the stupid question of the new ortis and said, well,
how long have I gone? You know, and so yeah,
he gave me an answer and probably lots of contexts.
And my latest neurologist is also is also fantastic and
(35:18):
has always been very much well, you know, your job
is to live your life, and my job is to
enable you to do so, you know, which is really
empower you to live your life really important. Yeah.
Speaker 2 (35:32):
The other thing I was wondering, Kyle, is that you know,
when when people get a big life changing diagnosis like
what you know you've experienced, Jennifer actually gives us this
idea of like, well, now I need to reassess things
in my life. And I sometimes wonder, you know, why
why we have to wait for that moment to come
as quell. It's like, you know, there's there's always a
(35:53):
good chance to do a bit of self assessment.
Speaker 5 (35:55):
But it's really and we could probably come this to
this on the other side of the of the newsborn
weather which is creeping up on us. But I also think, actually,
even if we don't get a diagnosis of a condition,
we can still ask ourselves that question, the what if question.
What if I only had five years to live, how
would my life look different? What different choices would I
make today? I think it's always a good question to
ask ourselves.
Speaker 2 (36:15):
And I think it comes back again to that story
that you want to tell yourself, you know, five years
from now, what's the story that you would love to
tell about yourself.
Speaker 3 (36:24):
Yeah, well that is really important. Don't let anyone else
write your story, write your own.
Speaker 2 (36:30):
When did the idea first, you know, come to you
to go for this epically long walk?
Speaker 3 (36:36):
Yeah, it's an interesting question. I mean, I suppose I
had been thinking about doing a long walk for a while,
really arising out of the walking groups that I got
involved in and time spent in France and seeing people
doing the long walks, and I think I idly thought
to myself, well, that looks fun and maybe I'll do
that one day. And you know, people had talked to
(36:59):
me in the walking groups about having done the Kmino
at Santiago, So that was kind of something that was contextual.
But to the extent I thought about it, I thought, well,
you know, you do that for a purpose, you know,
and I don't have. I felt like a bit of
a fraud. I didn't have really a reason for doing that.
But of course, you know, be careful what you wish for.
(37:22):
When I got the diagnosis, I was like, well, that's
that's a reason, you know, particularly when I you know,
inevitably went away with that diagnosis and did my own
research and reading and including you know, not only finding
people like me, but but interrogating, you know what, what
(37:42):
the evidence suggested, what people were saying, you know, they
were finding helped, and really it was it was obvious
to me that the one thing that everybody could agree on,
other than you know, medication in medical science is is
lifestyle changes, particularly exercise, and I, yeah, just came to
(38:04):
the conclusion there seemed to be a theme around I
read a bunch of stuff from people, including you know,
one guy who had you know, supposedly walked off his condition,
and I don't think he was suggesting that it was
a cure, but he certainly was managing to live a
long time, you know, reasonably well through walking. And I thought, well,
(38:27):
that's a no brainer. You know, I walk anyway so
long as I can put one foot in front of
the other. Surely itself fulfilling that I can put one
foot in front of the other. And so yeah, so
I said about said about walking and did my first
long walk, first kind of pilgrimage Comino walk in twenty
twenty two.
Speaker 2 (38:47):
And where did you go from? And where did you
go to?
Speaker 4 (38:50):
Yeah?
Speaker 3 (38:50):
So I decided to walk across France because you know,
France is one of my first loves, and I love
the back country of France. So I walked from Le
Prillon Valet, which is a little hilltop town in the
volcanic area west of Lyon as probably the closest big city,
and then down on an eight hundred kilometer diagonal into
(39:12):
the Pyrenees to s Jean Pierre de Paut, which is
the town where most people would start walking if they're
walking the Camino to Santiago, the Camino Froncaise.
Speaker 2 (39:24):
But you didn't stop with that being your only walk,
did you? Now? No, I did not know you made
this this other epically long one where you went from Canterbury,
but Canterbury, United Kingdom, not Canterbury South Island. Although you know,
as a as a proud to Targo boy, I would
always advise walking out of Canterbury South, preferably South, preferably yeah,
(39:47):
across the White Taki, but no Canterbury, United Kingdom. You
walked all the way to Rome.
Speaker 3 (39:52):
All the way to Rome, yeap too, and well two thousand,
four hundred and seventeen kilometers to be precise.
Speaker 2 (39:59):
I bet you counted you everyone, yep. And this has
become the foundation for your book which you've put out
called The Only Way Is Up on Foot to Rome. Yes,
it's a great.
Speaker 3 (40:12):
Book, thank you. Yes, it was a great walk. Yeah,
it's interesting. I mean, you know, I'd done a couple
of other other shorter in invert coomas walks across France.
But and I pretty much said to my I said
to Stephen when I came back from that first one, Look,
I'm I'm really sorry, but this is this is so good.
I'm going to have to do one of these every year.
(40:35):
So yes, I but I came to the Via front
Egina from Canterbury to Rome sort of, you know, just
by a path of inevitable momentum really as it happened,
just things along the way that led me to the
idea that, yeah, to the obvious idea that that would
be one to do, and so so I decided. So
(40:59):
I decided to do it. And having done two already,
I gaily thought, yeah, I know what I'm doing. I
can do this. You know, I don't think I necessarily
lot it easy, but you know, there was a lot
of planning evolved, but it's very easy to talk the talk,
and then you know, you arrive at the start as
I did, and realize you've got to actually walk the talk.
(41:21):
It's a long way.
Speaker 2 (41:22):
And how long did it take? You've actually got it
in here? It's this number of days, wasn't.
Speaker 3 (41:26):
It took me almost one hundred days ninety nine days
of walking, about ten rest days in there as well.
Three months, yeah, but three and a half months. Yeah, yeah. Yeah.
Speaker 2 (41:38):
We've got a copy of the book to give away,
and we're actually going to give it to one lucky
caller tonight. So get in on the fine Z eight
hundred and eighty ten eighty with your either questions or
any of the any of the stories, with your own
experiences with either Parkinson's or diagnosis that you would like
to share with us. I guess the main question is is,
(42:02):
you know, considering that you have Parkinson's, you have this condition,
is how much did they affect you to be able
to do or not do this kind of level of exercise.
Speaker 3 (42:13):
Yeah, so far, touch Wood, not much at all. That
The remarkable thing that I discovered quite early on is
that I don't experience Parkinson's and my symptoms of Parkinson's
in the same way at all when I'm doing this
long walking in nature as I do in daily life.
I'm not saying they're not there. It's still there, you know,
(42:37):
and it is progressive, but I definitely think it wards
it off. And I think it's a combination of, you know,
a physical benefit in the in the mobility, and the
engagement of the brain and the whole package. You know.
I'm I'm still doing a lot of unraveling of what
that is, you know.
Speaker 5 (42:57):
I sort of wonder whether there's something to the rhythm
or the routine of it being in a way very simple.
Speaker 3 (43:02):
Yeah, I think so there's a lot in it. There's
there's definitely the walking, There's there's the rhythm, there's a routine.
There's the of all the extraneous stuff that life delivers
you around it, and some of that's a privilege frankly,
you know, to do without that life admin for you know,
whatever period of time, somebody else is effectively picking it
up for you. Some you know, I'm very mindful of that.
(43:23):
But also, you know, in a perverse way, what I
really discovered with this walk, this long walk to Rome,
is that, you know, because that was across what four countries,
three different languages, your brain is having to multitask and
juggle at the end of a day of you know,
maybe thirty thirty five kilometers of walking when you're knack it,
(43:47):
and then you have to do like chores, and then
you're around it in the table, you know, having to
chat with people and you're having to organize your accommodation
for the next day or the next few days and
make phone calls and maybe French or maybe Italian, and
in your brain copes with it in a way that
my brain increasingly can't with Parkinson's right in normal daily life,
(44:09):
like I am starting to now struggle more with complexity,
with decision making, you know, with motivation to actually start things.
But yeah, I definitely, I don't find that a problem
at all on the road.
Speaker 5 (44:25):
I just want to point out you just sort of
offhandedly said, you know, thirty thirty five.
Speaker 2 (44:30):
K's a day.
Speaker 5 (44:33):
To begin to get the show. I was talking about
the walk that my girl did yesterday, the Reday for Life.
None of her friends can walk today, and they walked
about thirty five to forty ks. So, you know, the
other obvious thing is you must have been extremely fit.
A couple of weeks into this. Your body would be
in a very different state than it is now too.
Speaker 3 (44:52):
Yeah, definitely, I mean you build up to that obviously.
I do think now there is a core level of
fitness that you retain, and there's a muscle memory. But certainly,
I like to say, I mean, as I talk about,
you know, Pilgrimage and aversi Commas walking, it comes in thirds,
and for me the French Engine, it was the first
(45:13):
third was a mental game, you know, but your body
is sort of warming up, and then the second third
was kind of a physical game, and the third was
a spiritual zone. And that's when, yeah, you shed you
shed everything because you're physically fit and you're no longer
even thinking about walking. I mean, the incredible thing is that, yeah,
(45:33):
you can just We had days where we had one
day at least where you know, we were expecting to walk,
i know, seventeen kilometers and then I realized I've got
the bath wrong, and you know it was it was
actually twenty seven and blink and eyland. It was like, oh, yeah,
that's all right, there's another ten case, you know, that's okay.
(45:56):
We had another day where, you know, we had planned
some accommodation, it was going to be a short day,
and when we arrived there having left late, oh, terribly sorry,
We've somehow managed to double book and the only accommodation
they could find was another sixteen kilometers further on, and yea,
I said, well you can catch a train, you know.
And this time I don't think even thought about it.
(46:19):
It's like, oh, I'll just have lunch and that'll be fine,
and off that another sixteen kilometers.
Speaker 2 (46:25):
You'll just bed keep on, keeping on, keep on keeping on.
I promised to go straight to the lines, and I will.
We're here with our guest tonight. Jennifer Andrews As. She's
also the author of the book The Only Way Is
Up on Foot to Rome and if you want to
know where you can get the book from. It is
sold at all independent book shops around New Zealand, at
(46:48):
least the good ones. And you can also go onto
her website. My Parallel lives dot com has a lot
of l's in it. I'm not going to spell it all,
but you can google it. Just just google it my
Parallel lives dot com.
Speaker 5 (47:05):
I'll also put it on the Nutice Club Facebook.
Speaker 2 (47:06):
Oh you're a good man. Thank you. Let's go to line,
shall we. Let's go to Ben. Good morning to you, Ben.
Speaker 4 (47:14):
Oh, good morning, and first time call her here.
Speaker 2 (47:17):
Welcome to the show.
Speaker 4 (47:19):
Oh, thank you. Parkinson's. Where do I start? I'm the Caerra.
My wife was diagnosed with it, possibly about the year
twenty twelve. She was a very fit girl, into walking,
(47:42):
race walking, never smoked, had the occasional drink, was a vegetarian,
lived her life very very well. And she was diagnosed
with it and walking was her thing, and she still walked.
(48:06):
And she refused to give and to Parkinson's. She said,
I'm not telling anybody I've got parkinson So I just
completely refused to give into this disease. I'm carrying on walking,
which was great, which she did well. That was good.
That went on for possibly five years, and we did
(48:27):
some long walks five years five sorry, two hours, our
and a half two hours, two and a half hours
was great. And then one day she had a fall. Now,
people with Parkinson's when they fall can't save themselves. They
(48:50):
can't put their hands out, They just fall flat on
their face. And she had this terrible fall which she
fractured a jaw and all the side of her face.
And anyway, she ended up in the North Shore Hospital
in quite a state. She was in there for a
bit two weeks she came out and after about six
(49:12):
weeks she started walking again. That was great. About a
week after that, all we're walking along and I heard
this noise and I looked down and there she is,
flat on her face on the pavement again. This time
she broke a wrist in me and she had damaged
(49:35):
to head, the full head, which had to be stitched.
So she recovered from that, but that didn't stop her walking.
She carried on. But now I thought, well, I can't
let her walk by herself. I've got to do something
(49:56):
to stop a fooling. So we walk hand in hand now,
and I noticed that. As the years have gone on,
it's got to the point now where when she's at
home she staggers. She can't she's got the house set up,
(50:16):
so she gets up from a chair and she'll walk
to the table and grab it, and then she'll walk
to somewhere else and grab it. And that's her life now.
She's virtually house bound. She can't she can't go out
side by herself. But I take her outside and she likes,
(50:37):
she likes sitting outside watching the people and everybody. Everybody
knows her. And we live on the North Shore and
take her down for coffee in the mornings and we
sit there and have coffee and people come up and
talk to Margie, and everybody knows her. But she's even now,
she's her condition now is starting to deteriorate, and it's
(51:02):
getting harder and harder to look after her. But I
don't know what the solution is or what the outcome
of it's going to be. She's but strangely enough, when
I take her down to the park some days she
can't get out of the car, And I get her
(51:23):
out of the car, stand her up, lock the door
in the car, grab her hand and as soon as
we start walking, she starts to walk almost normally. Usually
she's when she's at home, she staggers, but she starts
to walk normally, well nearly normally, you know, and we
walk for forty five or fifty minutes a day.
Speaker 2 (51:47):
Well, Ben, this is I mean, just just listening to
what you've outlined here, you know, it's very very clear
that first and foremost Margie is phenomenal and also obviously
a very brave, determined individual. But also I just wanted
to say, so are you Well.
Speaker 4 (52:10):
It's it's what you do. It's what you've got to do,
you know, It's just it's a choice.
Speaker 2 (52:15):
It's a choice, Ben, and you and you guys have
made a wonderful choice as as a couple. And jeez,
you know, you know, I don't want to say that
you should you should have picture perfect people, but you
know that's unconditional love and action right there, my friend.
Speaker 4 (52:33):
Well we'll be married sixty years this year.
Speaker 2 (52:36):
There you go.
Speaker 4 (52:37):
And but it's hard, it's really hard people forget about
the care.
Speaker 2 (52:43):
Well, look, I think it's wonderful that you've you've told
us your experience there too, But I would say that
you know, the support that you give to Margie would
be immense as well. And you're right though too. You know,
people do forget about the cares and there's always so
many people and or you know, there's that one special
person like there is in your case, who's there quite
(53:04):
literally holding their hand, taking one step after the other
with them. So thank you for mentioning it.
Speaker 4 (53:11):
Yeah, yeah, I just thought one other thing before I go.
Please it's it people, It's I don't know if it's well.
I haven't actually tried it with Margie, but I've read
a bit about it, and walking backwards is very beneficial
to people with Parkinson because it's switches in terms of
(53:36):
brain round the brain's actually working in reverse by walking backwards.
If you understand what I mean.
Speaker 2 (53:43):
Jenner, you've got some experience with this.
Speaker 3 (53:45):
Yeah, I've heard that. I haven't actually tried that myself,
but I have heard it, and certainly what I was
going to say by way of comment is that to
the same sort of effect, I have definitely noticed that
that perverse effect which you mentioned in the context of
getting out of the car and then suddenly walking better
in the park. What my experience is that if I'm
(54:06):
going to fall over and In fact, the one time today,
thank goodness, that I have fallen so far, it's going
to be on a flat pavement. I do really well,
you know, in a really weird way when I'm on
really difficult terrain or unfamiliar terrain, because your brain is
triggered differently. I think in your brain you have to
(54:28):
concentrate on where you're putting your foot, and maybe there's
a bit of muscle memory in there as well. But yeah,
I definitely have noticed the difference with that.
Speaker 4 (54:39):
Yeah, that's yeah, that's correct, because I noticed with Margie. Well,
now that's she trips over her feet. I don't know
if you've know that you're with your condition, but she
actually trips over her feet. But if she's walking on
the road, she'll be walking fine, and then all of
a sudden, there's no reason at all, she'd trip over
(55:01):
a foot and you've got to grab her otherwise she's down.
But if she's on the grass where the terrain is
a she walks a lot better.
Speaker 3 (55:11):
Yeah, yeah, I definitely noticed that. I mean I scuffed
my foot quite a lot, and it's because, yeah, you
can't you increasingly can't judge the lifting of your foot
in proportion to the relative to the to the ground.
And a lot of times, because you know you're on
the pavement, you're just not thinking about it. You're taking
it for granted all of a sudden, even when you
(55:32):
think you're concentrating. Whereas, yeah, when I'm out crossing mountains
or walking on you know, leafy tree, rooty terrain, yeah,
I do really well because my brain is just having
to concentrate all the.
Speaker 4 (55:46):
Time, right right. The other thing like it. As Maggie's
conditions progressed, she's surfaced now from hallucinations. She sees people,
and especially at night, but she's not she sees like
(56:07):
a a little girl. She quite often says, oh, I'll
leave the life on for the little girl. Or how
many people for dinner tonight? Are we having three? Or
she sees this little girl, or she sees an older woman.
And I've actually read a bit about it, and this
as Parkinson's sort of gets worse, this is a common
(56:30):
factor with people with Parkinson's that they do actually hallucinate
and see things that aren't actually there.
Speaker 2 (56:38):
Yeah, you're not in your head here, Jennifer, that this
is quite something common in terms of Parkinson's conditions.
Speaker 3 (56:45):
Yeah, it's a fun thing Parkinson's. I got to tell you,
there's so many aspects to it, and yeah, that's definitely
that definitely does come with it. I haven't had too
much of that yet, but I've had that a little bit.
Speaker 2 (56:58):
Ben, first and foremost just want to say you have
been an outstanding caller. So considering this is your first
time calling us, I can only say gold star. We've
really really appreciated you calling in and sharing, you know,
your experience, so both you and Margie and so from
everybody here, just wanted to say wishing you guys nothing
(57:18):
but the best, and we would like very much to
give you the copy of the book. Thanks so much
for calling. Ben. It's yeah, I think you know we've
really touched on you know, as much as we've talked
about your story tonight, I do feel that we've really
touched on the cares as well, and that there's other
people that you know are part of this and actually,
(57:41):
as we talked about with Ben, quite literally hold your
hand as you go on this journey. Yeah, which is
interesting because I've got a text message here from Beverly,
and Beverly just asks the question, does Jennifer go on
these walks overseas with a group of people, and so
I guess that's an interesting part, like is it just
you out in the wilderness, you know, which kind of
(58:01):
then makes the idea of like Ben was talking about,
if you were to have a fall or something, you know,
like how does it work.
Speaker 3 (58:07):
Yeah, that's a great I have done these walks in
a bunch of different ways. The first couple that I did,
I did set out on each of them with somebody else,
which was great. Certainly for those first couple of ones,
I felt like I needed a bit of a comfort
blanket because you know, I was kind of I wasn't
sure how I was going to deal with them. The
big one that my book was about from Canterbury, I
(58:30):
deliberately set out on that by myself because I felt
like that's what I needed at that point. I needed
to actually prove to myself that I was still independent
and do that sort of stuff while I felt I
still could and that I didn't need someone else necessarily
there all the time. And you know, but of course
you meet other people along the way. I knew that
(58:51):
I would be intersecting with people at various points that
I that I knew along the route, and then as
it happened, I met an amazing woman and an Australian
woman along the way who was also walking to Rome,
and we ended up walking probably the last two thirds
of it together, which was a complete game changer. It
(59:12):
was just an absolute gift. And yeah, we just we
just laughed and laughed and laughed, and you know, and
she she she was you know, she she knew about
the Parkinson's and she was kind of but you know,
we were just walking, but she there was somebody there.
Speaker 2 (59:28):
What does the future if you look like at this point,
are you going to keep doing a big giant walk
every year and pump out another books has happened? The
new the new gig that you've given yourself.
Speaker 3 (59:37):
They'll definitely be walking, not so much a book every time, No,
definitely not. There's a lot of work in that and
sometimes you just want to walk. And I've already done
like a few other ones where I've yeah, I'm just
I'm just walking in some of those with other people.
So yeah, as long as I can, I'll be walking.
Speaker 2 (59:57):
And I hope that you know, in terms of doing
this as well, you know, you're you're still having to
actually manage the condition in terms of that, and when
it comes to a lot of the research around parking,
is there developments being made in terms of treatment and
has that got any kind of speed?
Speaker 3 (01:00:13):
Yeah, yeah, there's I mean there's lots of stuff going on.
I mean, the bulk of it, you know, probably just
is you know, random or isn't going to go anywhere.
There's a small amount of stuff that you know, potentially
leads to breakthroughs, and when you actually get a major breakthrough,
everyone will hear about it, so you know, it's pretty limited.
(01:00:34):
But there's money being thrown into all sorts of research,
and there are a few interesting things going on, particularly
around the use of stem cell treatments. So yeah, probably
putting the most hope in that area of research.
Speaker 2 (01:00:51):
And I suppose the other thing which I wanted to
ask you about before we wrap up tonight is for
anyone who's been listening to this who may either know
somebody who might be in an early early stage of
diagnosis or is supporting somebody who maybe care for somebody
with Parkinson's, is there much of like a Parkinson's support
(01:01:13):
network in New Zealand.
Speaker 3 (01:01:14):
Yeah, Parkinson's New Zealand is a great organization. It's a
very small organization doing a huge amount of work. Parkinson's
is the fastest growing neurological condition in the world, but
gets very little funding. So yeah, a very small organization,
but they have Parkinson's educators who are just making a
(01:01:38):
huge difference. So you know, it's we're underserved. We need
more neurologists, we need more of everything. But what's great
about the educators is that you know, I have the
educator's mobile phone number, and if I can't see the
neurologists for another six months or another twelve months, if
(01:01:58):
I need to, I can. I can text the educator
with a question, including around medication, and she can be
in touch with the neurologists on my behalf with a
quick question. So yes, it's fantastic.
Speaker 5 (01:02:12):
And that's Parkinson's dot org dot nz For anyone who
might want to look.
Speaker 2 (01:02:16):
There, Kyle chuck it on the Facebook page.
Speaker 3 (01:02:19):
That'd be great.
Speaker 2 (01:02:22):
Look, it's just been absolutely fantastic conversation. And so I
want to say, Jennifer Andrews, thank you so much for
being our guest this week here on the Nutters Club.
Speaker 3 (01:02:32):
You're welcome, Thanks so much for hearing me.
Speaker 2 (01:02:37):
Well, that's it for this episode of The Nutters Club,
thanks very much to our guest Jennifer Andrews, as well
as psychotherapist Carl McDonald. If you liked what you heard
and you think it might help someone out there, then
please share this episode on your own channels or with
family and friends. And if you ever want to be
part of the show, give us a call or a text.
(01:02:58):
When we broadcast live on News Talk SAIDB eleven pm
Sunday nights, New Zealand standard time. Check out Newstalk SIB
dot co dot nz for local frequencies or a link
to the live stream. A big thanks to New Zealand
on air for their ongoing support in making the show.
Take care and always remember the world is a better
(01:03:21):
place for you in it life. It isn't easy, it
is however worth it.
Speaker 1 (01:03:32):
For more from News Talks at B, listen live on
air or online, and keep our shows with you wherever
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You're listening to a podcast from News Talk SEDB. Follow
this and our wide range of podcasts now on iHeartRadio.
Speaker 2 (00:20):
Greetings and welcome. I'm Hamish Williams and you're listening to
the podcast version of The Nutters Club, a radio show
about mental health broadcast weekly on news Talk ZEDB. Each
week we talk with people about their mental health experiences
and the hope that it might help you with your own.
The show is broadcast live on Sunday nights on News
(00:42):
Talk SEDB right across New Zealand and around the world.
Our guest this week is Jennifer Andrews, who turned early
on set Parkinson's into a mission, walking thousands of kilometers
across Europe, including a two thousand, four hundred kilometer pilgrimage
from the UK to Rome. Most importantly, she says it's
(01:06):
not just about physical endurance, it was about her mindset.
She shares how she developed hers Let us know what
you think, as well as what you learn from our
chat with Jennifer on any of our social media platforms.
Just search for the Nutters Club in zied and come
join over one hundred and forty one thousand fallow nutters.
(01:27):
Let's get into this week's episode. Jennifer, thank you so
much for being here, Thank you very much for having me.
So look, tell us a little bit about yourself. We're
going to get to the walking part at some point.
But you know, where were you born? Where did you
grow up?
Speaker 3 (01:41):
Yeah? So I was born in bread and Dunedin on
the mainland. Yeah, grew up down there, pretty much spent
my whole early years down there and through school and university.
Speaker 2 (01:51):
Whereabouts in Dnedin did you grow up?
Speaker 3 (01:53):
Grew up just on It's called city Rise, just above
the city above Knox Church. Basically, oh yeah, Well easy
to walk everywhere.
Speaker 2 (02:01):
Yeah yeah, yeah, and you get you get pretty fit
in Toneden with the hills, walking up and down, don't you.
Speaker 3 (02:05):
Clay of Hills hill training from earlier on? There yet
walking everywhere?
Speaker 2 (02:09):
So which high school were you?
Speaker 3 (02:10):
Indoneedia Logan Park High School.
Speaker 2 (02:12):
Logan Park otherwise known as Bogan Park. Maybe I've I've
heard a few, but a great a great school right
there by the university.
Speaker 3 (02:21):
I was awesome. Yeah.
Speaker 2 (02:22):
And then what did you study at UNI?
Speaker 3 (02:23):
And then studied French and history?
Speaker 2 (02:25):
French in history? What was the plan with French and history?
Speaker 3 (02:28):
Well, I grew up in a household where French was
part of the fabric. My father was at the university
as director of the language learning Center at Otago, so
he had sabbaticals every sort of six or seven years,
so you know, we'd had the privilege really of spending
time in France. And yeah, so French was kind of
(02:49):
an obvious but I suppose it was partly rebellious. You know.
It's like the family. You know, Dad expected us to
probably you know, do French, and you know that happened.
But I was quite keen to back my own way
as well, you know. So yes, it did history, which
was an interesting choice because I had actually almost failed
that in school stuff as it was back then. So yeah, I.
Speaker 2 (03:11):
Thought you'd give it a crack at the academic level.
So you graduated, you finished that, and what was the
plan from there?
Speaker 3 (03:20):
Well, I just kind of made it up as it
went along. You know. I always envied my sister, who
had like a clear career path mapped out that she
wanted to do, was quite ambitious, and I was more spontaneous.
It's just like, oh that's cool, you know, get on
and do that. That sounded interesting. So I had a
few ideas. When I finished university, I wanted to one
(03:40):
idea is I wanted to go into the Foreign Service.
So I tried out for that and I was actually
pretty hopeless, was pretty pretty naive, and I thought I
wouldn't mind being a journalist, but yeah, I didn't. Sort
of I thought I probably better have some life experience
before I went straight into that. So yeah, I ended
up going and spending a year in France teaching English
(04:04):
in a high school on a French government scholarship.
Speaker 2 (04:07):
Well, I mean you had to agree, and friendship sort
of makes sense. Did you teach some history while you
were there as well?
Speaker 3 (04:12):
Try to? Well, you go a little bit of history
about New Zealand, you know, because you're going. I actually
I went to Dunkirk to teach, which was not my
first choice, but you got posted there and actually it
was fantastic. Met some great people there, and yeah, but
they didn't know much about New Zealand. So yeah, so
(04:34):
actually made it a great friendship with a history geography
teacher who I'm still in touch with, And yeah, did
some did some history teaching, a bit of geography teaching
about New Zealand, and some of his.
Speaker 2 (04:46):
Classes wonderful and so where did they How long did
this take you for? You know, how many years were
you doing that?
Speaker 4 (04:52):
That's right?
Speaker 3 (04:52):
Yeah, just a year, just well nine months. Yeah, so
over pretty quickly. And I think, I mean that was
when I got into walking. Actually was when I landed
there pretty green and didn't know anyone, and and thought,
you know, how can I what can I do That's
going to get me to meet locals and see a
(05:15):
bit of the countryside. And you know, I didn't have
much money, so I had to be free. And yeah,
I met someone who was part of the local walking
clubon I thort ovel. That's genius. I can put one
foot in front of the other probably, And yeah, so
pretty much most weekends we were out and about and yeah,
I discovered the joy of that then.
Speaker 2 (05:34):
And so a great way to see the French country side.
Was it mostly that you were exploring?
Speaker 3 (05:40):
Yeah, I mean and mostly flat lands around there?
Speaker 2 (05:44):
Yeah great, I mean that makes right.
Speaker 3 (05:47):
You know, the odd hill, but yeah, it was. It
was a great way to get out and see all
of that countryside around Dunkirk and the north there into
Belgium or the borders with area with Belgium, Flanders fields,
you know, which are so emotive for you know, including
for New Zealand involvement in the Wars. So yeah, so
(06:08):
it was great.
Speaker 2 (06:10):
And I think, you know, once again I'm feeling that
that vein of history coming back through as well, right, yeah, I.
Speaker 3 (06:15):
Think so, yeah, there's definitely an element of that.
Speaker 2 (06:19):
So he came back to New Zealand after that.
Speaker 3 (06:21):
Yeah, So I came back to New Zealand pretty much
with literally well actually I had zero dollars. So my
dad came over. He had some work to do over there,
and it's it aligned with when I was due to
come back. So we actually flew back into New Zealand
together on the same flight into christ Church and then
he was going south to don Edin and I was
(06:42):
going north to Wellington to meet up with my then
boyfriend now husband. And yeah, I pretty much just maxed
out on my entire mega budget. I thought, you know,
damn it, like I'm in France, who knows when I'm
coming back. I just spent every dollar that I had.
And so on the plane on the way back, I
kind of thought, crumbs, I can't actually arrive on the
(07:05):
boyfriend's doorstep, to be fair, with zero do So I
said to my dad on the plane. I said, Dad,
could you would you mind lending me fifty dollars so
that you know, I could so pair play. He gave
me fifty dollars and I arrived in Wellington with fifty dollars. Yeah,
and then got a job.
Speaker 2 (07:26):
So fifty dollars was the catalyst to get you going?
Speaker 3 (07:29):
Yeah?
Speaker 2 (07:29):
Yeah, right? And what did the job look like? Yeah?
Speaker 3 (07:32):
So I landed a great job. I had a student
gig when I was at a targo working for the
Dunedin Visitor Center and loved at you know, it was
a great use of my languages and interest in tourism
and in the sites and things, and so yeah. When
I landed back in Wellington, I did some rounds of
(07:55):
likely places to work, including the Wellington Visitor Center, and yeah,
basically left my CV on a couple of people's desks
and managed to talk my way into a gigas the
manager of the Wellington Visitors Center. That's not bad, which
was pretty I was pretty stoked about. That was pretty cool.
Speaker 2 (08:14):
How long ago was this?
Speaker 3 (08:15):
That was ninety six? Oh wow, nineteen ninety six, ninety seven.
Speaker 2 (08:21):
You would have been there for the Wellington Renaissance. The
absolutely positively Wellington to Papa.
Speaker 3 (08:28):
Yeah, I lost, like, you know, a couple of the
staff to go work down there as guides. So it
was a very exciting time. Yeah, I loved it. Yeah,
but then that, yeah, that kind of came to close
after a couple of years. I guess I got to thinking, well,
you know, am I going to do this for like
the rest of my life or you know, customer services?
(08:49):
You know, it's hard even though it's fun, sure, And
I thought, actually, I really I need to get into
something that's kind of you know, going to take me
further and it's closer to my degree maybe. So yeah,
so what did that look like? So I ended up
working for Winston?
Speaker 2 (09:05):
Yeah you worked for Wennie?
Speaker 3 (09:06):
Yeah I did.
Speaker 4 (09:07):
Yeah.
Speaker 3 (09:08):
The first Yeah, like a lowly job as a as
a correspondence writer basically you know, receiving all his mail and.
Speaker 2 (09:19):
Was it was it lots of fan mail?
Speaker 3 (09:21):
Lots of fan mail?
Speaker 4 (09:22):
Yeah?
Speaker 2 (09:23):
Did Winston get fan mail?
Speaker 3 (09:24):
He got the occasional fan mail, Okay, he got he
got written to about all sorts of things, right, I'm
sure colitics and there are themes and a lot of that.
So my job was to kind of you know, open
them all up and and theme the stuff and do
some first drafts for him him to sign.
Speaker 2 (09:41):
Yeah, and so this this sort of led you into
a sort of comms sort of career from there.
Speaker 3 (09:46):
It did, actually because I that was just before the
nineteen ninety nine election, right yeah, when everything you know
ended up going. But it was full on and and
so it was all hands to the pump and and
you know, I mean they had a they had a
comms person, they had a media guy, but you know,
(10:08):
they needed help basically with that work and a pre
election mode. And so I just said, well I can
I can do that, and I can help write like
publicity material, and I can help do desktop publishing. It
was the very early days of desktop publishing. So I
taught myself to do that and helped with like you know,
press releases and things, and basically bluffed my way into
(10:32):
coms from there.
Speaker 2 (10:34):
Fantastic. So this this of you, you obviously got married
at some point there, because you've you know, so that
that happened.
Speaker 3 (10:41):
Yep, that happened. Yet the boyfriend became the husband.
Speaker 2 (10:44):
Yeah, okay, well that's that's a reasonably good trajectory. Yeah, Okay,
So it was ninety eight and then you know, fast
forward sort of, you know, ten years from there, and
you know you've you've established yourself really well. So you know,
we're talking about twenty ten, but in twenty ten you
noticed something a little bit different was going on.
Speaker 3 (11:02):
Yeah, that's right. So I mean by that stage, we
we'd actually, I mean we're initially been in Wellington for
a while and then we decided that we wanted to
spend some time overseas, but we had a mortgage, so
it was like, well, we're really one of us needs
to have a job to go to and we decided
which of one of us gets a job first, that's
(11:25):
where we'll go. And so, yeah, my husband, Stephen, he
got a job in Cardiff for the University Hospital of
Wales and public left to public Health Service in Wales,
and so we moved to Cardiff and we were there.
We were there for about six years, and yeah, so
I got involved in life over there and had the
(11:46):
first two boys there and yeah, joined a local church
choir and so I've always sung in choirs. And then
year towards the end of that time and when we
came back to New Zealand from there, I just noticed
that I had this weird thing where I, although it
(12:07):
was really used to standing up and singing in front
of people, all of a sudden I started shaking when
I was holding the music, and it was really distracting,
and I tried to manage it for a while, but
it got to the point where I was like, actually,
I'm going to have to stop singing because you know,
(12:28):
it's hugely distracting for the audience, let alone for me,
you know, to actually be standing up there and wobbling.
So yeah, So so it was about it was about
that time, maybe two thousand and eight, twenty ten, that
I started to notice that and think there's something there's
something funny, but I didn't know what that was.
Speaker 2 (12:51):
The hand started shaking about somewhere between two thousand and
eight twenty ten. What did you remity yourself with to
think about this singing? You obviously, you know, knew it
was distracting when you were doing singing, But what was
the explanation in your mind as to what was going on?
Speaker 3 (13:08):
Yeah? I really didn't know what was going on. I
mean I thought I thought I must have some kind
of like nerves or anxiety, even though I never had
that to that extent, you know, you get a natural
amount of nerves. I've always been, you know, liked performance.
I used to do acting and be involved in productions
at school and university, up on a stage performing, you know,
(13:33):
no problem at all. And then so it was it
was a bit weird, but I thought, I guess it
just saw, well, I must, I must. I must have
acquired some extra nerves somewhere or something. And so for
the first while, I thought, well, this is ridiculous. You know,
put your big girl pants on and just manage it.
But that became harder to do.
Speaker 2 (13:55):
So how did things change over the next few years
with what you know, it was just something that had
become a little bit strecting.
Speaker 3 (14:03):
Yeah. Well, the first thing I did was I stopped
doing what I liked do because I could, I felt
like I couldn't do it, and and it was it
was easiest to just stop doing it. And then you know,
and that way, you know, I could kind of ignore
what was what was going on, I guess, And uh, yeah,
(14:26):
the first main thing was the thing. And when I
gave that up for several years, I didn't really experience
it anywhere else. Yeah, So, I mean then I started
to notice in the workplace, I suppose reasonably early on
around that time that, yeah, if I had to stand
up and do like a farewell speech or something like that,
(14:48):
you know, I would try and do it without notes
because you know, I couldn't. I couldn't visibly hold the
piece of notes without shaking, and that was too obvious
to people. So you know, so there was a long
period of that sort of that sort of thing going on.
Speaker 2 (15:08):
So you're just sort of self correcting, and and did
did the idea of not knowing what was causing this?
Did that grow over time?
Speaker 3 (15:17):
Yet did the first the first then the first time
when I really noticed something was seriously a miss was
when I started a new job in twenty seventeen. And
it was a fairly demanding job. It wasn't dis similar
to roles I'd had in the past, but it was
for a bigger organization, you know, in a bigger team,
(15:41):
responsible for a bigger scope of work. And and I'd
come back to it from a period of time overseas
not working, you know, writing running a BMB, so it
was you know, sort of back into the into the
full time workspace. And yeah, and I had this shake,
and it presented itself in you know, normal work scenarios,
(16:06):
but in public where I had to stand up in
front of people, you know, whose opinion about me mattered reputationally, professionally,
and people thought I was nervous and I knew I wasn't,
and you know, how do you explain that when you
can't even explain it to yourself? And I just felt
bad about it, you know, I felt embarrassed about it. It
(16:28):
was affecting my sense of self and my self confidence,
and I thought, I've got to I've got to do
something about that.
Speaker 2 (16:37):
So what did you do?
Speaker 4 (16:38):
So?
Speaker 3 (16:39):
I went to the GP was the first thing. I
sighted myself up. Well I'm not really I don't like
going and doing anything medical, but yeah, sighted myself up,
went to the chaps and got this shake. I don't
know what it is. It's a bit weird, and yeah,
I know. She you know, I was pretty young at
(16:59):
that stage. I s both early forties and you know,
fit well and otherwise healthy. And so she said, look,
that happens from time to time, could be all sorts
of things. Take some better blockers. I'll give you a
prescription and you take one of those when you need
to do anything you know, that requires you to perform,
(17:21):
and that'll just mask it. So I did that.
Speaker 2 (17:24):
What happened.
Speaker 3 (17:26):
Yeah, So I took those irregularly from time to time
when I needed them, and initially I felt like that
was working well and I thought, oh, great, that's covered it.
And then I suppose over the course of a year,
I had to acknowledge myself that I was probably taking
those beta blockers more often than not, and more often
(17:47):
not they weren't really working. So yeah, at that point,
about a further year in, I realized there was something
else going on. And I still I sat on that
myself for probably the best part of another year.
Speaker 2 (18:10):
Before. How did that make you feel? You know, when
you were sitting on it, Talk to me about that,
that kind of feeling. I mean, was it something that
kept you up at night or just was sort of
niggling you?
Speaker 3 (18:20):
Yeah, kind of. I mean I wasn't really losing sleep
over it, but I was always conscious of it, and
I was most conscious of it, of course, when I
had to hit something coming up that was you know,
that had a bit of pressure around it, or that
you know, a bit a bit of demand, a bit
of stress, and that would make it worse, right, because
(18:40):
I was thinking about it. The more I thought about it,
the worse it was, and the worse it presented itself.
Speaker 2 (18:45):
So just like, damn it, I hope that the thing
doesn't happen when I got I've got this meeting, I've
got this presentation.
Speaker 3 (18:50):
Exactly, I've got to have this really important conversation with
the chief executive or a really difficult conversation with a
staff member. And yeah, and i'd be you know, you'd
be preparing for that. Well, I was preparing for it,
and you know, kind of seemed like all of the
worry was accentuated.
Speaker 2 (19:08):
So a year goes by and things aren't getting better.
If anything, it sounds like they're getting worse. So you
needed to do something else.
Speaker 3 (19:16):
Yeah, So we went back to the GP finally, and
I think i'd had a conversation with my husband with
Stephen and said, look, actually I think there's something not
quite right here. So but you know, I don't think
either of us really expected it to be anything serious.
So we're back to the GP and I, yeah, but
(19:38):
I think I'd already quietly thought in my brain about
what it might be, even though I didn't want to
really voice that. So I went to the GP and explained,
and I just remember she looked at me and I
looked at her, and neither of us said the P word,
but both of us, I think, were clearly thinking the
(19:58):
P word as in Parkinson's. And she gave me she said, look,
I'm going to give you a referral to neurologist. And and
of course, you know, then you wait with baited breath
to get that appointment with the neurologist. And I, yeah,
I think I got one relatively quickly, actually within maybe
six months or so. Yeah. So that so the neurologist
(20:23):
was the next step.
Speaker 2 (20:24):
Is that quirk? Six months?
Speaker 3 (20:27):
Yeah, I feel like that's pretty easy quick.
Speaker 2 (20:31):
All right, So you had this meeting and it was
confirmed that it was Parkington.
Speaker 3 (20:35):
Yeah. So so I went in and you know, and
I was and I was young and again fat, and
I think, you know, for very reasonable reasons that the
neurologist had prioritized his time and thought, you know, well,
this won't be anything to see here. So they asked
me if I was happy, if you know, a couple
of interns could could be there and I and do
(20:57):
their initial observation. I said, yeah, that's sign, so bless them.
There's two two lovely young medical students, you know, diligently
did all of the assessment that they do when they're
looking for such things over the course of two hours,
and I could kind of tell that they'd found something.
(21:20):
And then the neurologists, who you know, very experienced and lovely,
breezed in, you know, in the last five minutes, I think,
prepared to you know, see nothing there. And I remember
he said to them, he breathed, and he said, wow,
he said in front of me. You know, so I
take it you haven't found anything, or words to that effect,
and I could see the looks on their faces as
(21:42):
they were trying to figure out how to tell him,
you know, actually we have. Yeah. So he then proceeded
to do in five minutes what they'd taken two hours
to do and and yeah, basically confirmed. He said, oh, yeah,
you've got early onset Parkinson's.
Speaker 2 (22:01):
When you get told that you have Parkinson's, you know,
early on set Parkinson's was the diagnosis. What was your reaction.
Speaker 3 (22:10):
Yeah, I'm not gonna lie. It was quite confronting, but yeah,
but I'm quite a pragmatic person and I did know,
you know, I kind of knew, and so in that sense,
it wasn't a surprise to me what he had said,
So it didn't really I don't know, I just thought, oh, yeah,
(22:31):
that makes sense. And I suppose there's an element of
like just hid in the sand in there as well,
you know, I was. I was undoubtedly in denial, though
I wouldn't have called it that. Uh, you know, I
just I guess it was just like, right, okay then,
and I probably wasn't taking too much and at that point,
(22:54):
but yeah, out the door I went. And I mean,
Stephen hadn't even come to the appointment because you know,
we weren't really I don't I mean, I don't think
we were really expecting, you know, anything significant. And in hindsight,
you know, kind of I suppose it was significant, but
I you know, even now, I don't really think of
(23:14):
it that way, because yeah, I suppose mainly because I, yeah,
I already actually knew, so, you know, to some extent,
I'd already been processing up to that point of actually
getting to that diagnosis. That was the end of a
long period for me of living with symptoms and processing
(23:36):
what that was likely to be.
Speaker 2 (23:39):
So was there a feeling of relief then for the confirmation.
Speaker 3 (23:42):
In some ways in the sense that yeah, okay, I
can stop in a weird way, I can stop worrying
about that, because that's what that is. Having said that,
there is an awful lot of uncertainty around it. Diagnosis
is clinical, so you know, yeah, you know, you can
do an assessment and when you know what you're looking for,
as neurologists do, you know, you can have a pretty
(24:03):
good guestimate, but you then have to go through a
process of all other things out through a whole bunch
of tests that you can do for other things, you know,
like a brain tumor or anything obvious like that, and
also seeing how it progresses, and so you know, further
further appointments, you know, another four months, another four months,
(24:26):
you know, a year to just see, yeah, what the
progression is like, to confirm that, and then ultimately medication
and in a funny way, you know, if the medication works, well,
that's yeah, nail in the coffin sealed. Yeah, that's what
you've got because the medication works.
Speaker 2 (24:48):
With all of the practical stuff, though there's also now
the reality that your life is probably going to change
and coming to understand what that's going to look like,
not just for you, but you know, for Steve and
your husband, for you know, for your kids, for your family,
for your work. So when did you start actually thinking
(25:09):
about that sort of stuff? When did that start to
come into the picture, the.
Speaker 3 (25:13):
Reality of it all. Yeah, not immediately. And you know
you probably laugh at this, but maybe not even now.
Like I just I just don't want to deal with it,
you know, it's just like, actually, what does any one
of us want to do? But just carry on carrying on,
like you know, that's stuff for another day. I mean,
I can remember quite early on one of my sons
(25:36):
said to me, Mum, wyat you more angry? And I
thought that's really interesting. I thought, well, I because I
am a little angry. But like, but I but I've
never really vocalized that, certainly, not externally and not really
even to myself. It's just it sits there as a well,
this is not great, and I'd rather this was not
(25:58):
happening to me. So I'll just set that aside and
carry on doing what I can do and what I
want to do. I mean, there's thing is, Yeah, the
neurologists probably said a lot of things to me in
that initial meeting. But the one thing I remember is
that he told me that I might have five able
(26:19):
bodied years. And he probably told me a whole lot
of other things around that, but that was what stuck
in my brain. And what I did with that was go, no,
I'm going to have more than that. I want more
than that, and I don't believe that, and I won't
have that. So I suppose from the very beginning, I
just set out quietly to just keep on keeping on
(26:42):
for as long as I possibly could and see what happens.
Speaker 2 (26:47):
So two things. First of all, what has changed? And then,
you know, you talk about the keeping on keeping on?
What does that look like?
Speaker 4 (26:55):
You know?
Speaker 2 (26:55):
Has it just been business as usual for you? Ordered
Have your priorities in life changed with this diagnosis? Yeah?
Speaker 3 (27:02):
I think inevitably my priorities in life have definitely changed.
You're not not in really substantial ways. I think my
fundamental values and my core interests in my things that
I want to do are still the same. But I
have just been more focused about spending more time on
(27:24):
the ones that I want to do more of than
the ones that I want to do less of. I mean, yeah,
like way back even before I knew I had anything.
I am. At one point when I was going through
a phase of setting long term plans and goals, as
you do in that sort of thing, because you think
that's important, I set myself this snappy goal to work less,
(27:47):
travel more, But actually I didn't really do anything about
it apart from, you know, just traveling more on the
course of work in some ways. And so yes, so
I suppose what I've done since the diagnosis, over the
course of a fair period of time is just, yeah,
(28:09):
spend less time on the work, on the on the
paid work, and more time doing the things that bring
me joy and that do me good, you know, mentally
and physically.
Speaker 2 (28:25):
And and some of those things. You know, what what
if some of those things look like and what you know,
what have been the new priorities post diagnosis week.
Speaker 3 (28:32):
Yeah, well, walking is the obvious one, is the big one.
And you know, I'd always walked everywhere, always light walking,
you know, done a few of the great walks in
New Zealand, lots of bushwalks growing up, you know, just
walked everywhere in the course of but I'd never really
done you know, substantial sort of purpose driven walks. I
(28:57):
joined the walking club. I'd enjoyed that. I did a
bit more of that more recently in our time in France,
but just sort of socially. And yeah, then I guess
when I had this diagnosis, I did go out and
do a whole bunch of reading, you know, as you do. Right,
what can I find out about this?
Speaker 2 (29:17):
Yeah?
Speaker 3 (29:18):
Looking for people like me? Right like? Because because the
prevailing view I had, which is probably what most people
think when they think of Parkinson's as oh, that's an
old person's disease. You know, that's you know, do I
say it for old old men? You know, it's not
for young, active women like me. And so what that
meant was, yeah, that actually when I looked at the
(29:41):
narrative and the bump, you know, the information available, certainly
in New Zealand, it was mostly directed at, you know,
people who were in that category at an older stage
of life. Most of the activities for people with Parkinson's
held in rest homes, you know, and that wasn't of
(30:02):
interest to me. So so I went looking for people
like me, thinking there must be I can't be alone
in this, right, be people like man. It was really
hard to find them in New Zealand. So I went
online on Twitter mostly as it was in the day,
and I found my people in the UK and Europe
and around the world. I was like, wow, there are
(30:24):
all these people like me and younger than me, and women,
so many women, so many young women. As it just
flabbergasted me. And they were living, they were living with
the condition, and they were certainly living this condition longer
than five years, and it was validating and I thought, yeah,
you know, I've got a life like, this is not
(30:46):
a disease. It's going to kill me tomorrow or next
week or next month, you know, or even in the
next five years. So let's just get on with it.
Speaker 2 (30:54):
So when you found your community online in you know,
it was that sense of actually being given some hope
that this isn't it. Well, you know, sorry to tell you, Jen,
it's five years and you're done.
Speaker 3 (31:06):
Yeah, well it completely changes in the narrative, right, and
the narrative changes the way that you think about it
so important, you know, and I as a comms person,
I thought, wow, that's really that's a really personal lesson.
Speaker 4 (31:18):
You know.
Speaker 3 (31:19):
It's really it matters how you get that message across,
because it matters how it's received and what you do
with that. So, I mean, the one thing that I
have done with that in particular is that often it's
referred to or usually it's referred to as Parkinson's disease.
I like to refer to it as a condition that
(31:39):
I have, not because that changes the diagnosis, not because
that changes the outcome, but it changes the way I
think about it and therefore the way I manage it.
So I prefer to think of it as something that
I can manage, like diabetes, because I have to live
with it, you know, and I do that in a
range of ways, including medication and lifestyle, including walking. And
(32:02):
you know, that's quite different from from being told that
you have a disease that's in terrible that they can't
do anything about that you know, will maybe disable you
in five years time.
Speaker 2 (32:13):
So you changed the story that you were telling yourself first, yes,
and then make get your reality?
Speaker 3 (32:19):
Yeah? Yeah, Because I think, like with anything that I've experienced,
I realized that I needed to understand and accept what
it meant for me before I could feel that I
could talk to other people about it.
Speaker 2 (32:34):
Carlo, I wanted to bring you in here is the
idea that when we get a diagnosis regardless of what
it is. But you know, especially when someone says to you,
you're not going to be that mobile in five years time,
I mean, it's pretty confronting, right Well, yeah, absolutely.
Speaker 5 (32:52):
And it's a bit shocking. I guess The thing is, though,
is that I mean, actually, we were talking about this
before we came on here, Parkinson's in particular, and actually,
my understanding is a lot of the neurological conditions are
like this are actually very individualized, and a lot of
doctors these days, and even with you know, diseases that
(33:13):
we might expect them, things like cancer, are very reluctant
to give any kind of timeline to people because the
problem with it is that it can become self fulfilling,
because what it does is it leads to people feeling like, oh, well,
you know, I might give up then, or you know,
after four years, you might give up and start feeling like, well,
my time's nearly up, as opposed to actually what And
(33:33):
I think language is really important and you know, a
lot of times now we talk about this idea of
living with a condition, living with Parkinson's or living with
other diagnoses, and recognizing that actually we can actually do
a lot for people with medication and treatments, and actually
we can also do a lot with support. I mean
(33:54):
I liked you keeping on keeping on. I think that's perfect, right.
I mean, every day you're waking up and you're living
with this condition, you're managing the condition, but actually every
day you can still live your life in a way
that might be different than you did ten years ago,
but it is still alive. And I mean there's the
thing about denial, right, Like, I mean we sort of
touched on that a little bit. I mean, it's possible
(34:18):
it denies one of those things. I think it's almost
a bit of a myth. No one goes into complete denial, right,
People might briefly have periods where they don't want to
know something or don't want to engage with something, And
certainly early on with your symptoms, that was understandable, right.
But actually when you talk about no, I'm just not
going to have that, I think, No, that's not denial,
that's actually just coping, that's actually deciding, as you said, Hamish,
(34:39):
how I want to write the story for myself.
Speaker 2 (34:42):
And it also seems particularly.
Speaker 5 (34:45):
Pertinent really with Parkinson's that a lot of the way
you talk about it is just keeping on going because
one of the difficulties with Pakinson is actually movement, isn't it.
So you need to keep moving?
Speaker 3 (34:55):
Yeah, you do, literally, yeah, yeah, yeah, absolutely, yeah, And
you're right and you know, undoubtedly And I may have
even asked the stupid question of the new ortis and said, well,
how long have I gone? You know, and so yeah,
he gave me an answer and probably lots of contexts.
And my latest neurologist is also is also fantastic and
(35:18):
has always been very much well, you know, your job
is to live your life, and my job is to
enable you to do so, you know, which is really
empower you to live your life really important. Yeah.
Speaker 2 (35:32):
The other thing I was wondering, Kyle, is that you know,
when when people get a big life changing diagnosis like
what you know you've experienced, Jennifer actually gives us this
idea of like, well, now I need to reassess things
in my life. And I sometimes wonder, you know, why
why we have to wait for that moment to come
as quell. It's like, you know, there's there's always a
(35:53):
good chance to do a bit of self assessment.
Speaker 5 (35:55):
But it's really and we could probably come this to
this on the other side of the of the newsborn
weather which is creeping up on us. But I also think, actually,
even if we don't get a diagnosis of a condition,
we can still ask ourselves that question, the what if question.
What if I only had five years to live, how
would my life look different? What different choices would I
make today? I think it's always a good question to
ask ourselves.
Speaker 2 (36:15):
And I think it comes back again to that story
that you want to tell yourself, you know, five years
from now, what's the story that you would love to
tell about yourself.
Speaker 3 (36:24):
Yeah, well that is really important. Don't let anyone else
write your story, write your own.
Speaker 2 (36:30):
When did the idea first, you know, come to you
to go for this epically long walk?
Speaker 3 (36:36):
Yeah, it's an interesting question. I mean, I suppose I
had been thinking about doing a long walk for a while,
really arising out of the walking groups that I got
involved in and time spent in France and seeing people
doing the long walks, and I think I idly thought
to myself, well, that looks fun and maybe I'll do
that one day. And you know, people had talked to
(36:59):
me in the walking groups about having done the Kmino
at Santiago, So that was kind of something that was contextual.
But to the extent I thought about it, I thought, well,
you know, you do that for a purpose, you know,
and I don't have. I felt like a bit of
a fraud. I didn't have really a reason for doing that.
But of course, you know, be careful what you wish for.
(37:22):
When I got the diagnosis, I was like, well, that's
that's a reason, you know, particularly when I you know,
inevitably went away with that diagnosis and did my own
research and reading and including you know, not only finding
people like me, but but interrogating, you know what, what
(37:42):
the evidence suggested, what people were saying, you know, they
were finding helped, and really it was it was obvious
to me that the one thing that everybody could agree on,
other than you know, medication in medical science is is
lifestyle changes, particularly exercise, and I, yeah, just came to
(38:04):
the conclusion there seemed to be a theme around I
read a bunch of stuff from people, including you know,
one guy who had you know, supposedly walked off his condition,
and I don't think he was suggesting that it was
a cure, but he certainly was managing to live a
long time, you know, reasonably well through walking. And I thought, well,
(38:27):
that's a no brainer. You know, I walk anyway so
long as I can put one foot in front of
the other. Surely itself fulfilling that I can put one
foot in front of the other. And so yeah, so
I said about said about walking and did my first
long walk, first kind of pilgrimage Comino walk in twenty
twenty two.
Speaker 2 (38:47):
And where did you go from? And where did you
go to?
Speaker 4 (38:50):
Yeah?
Speaker 3 (38:50):
So I decided to walk across France because you know,
France is one of my first loves, and I love
the back country of France. So I walked from Le
Prillon Valet, which is a little hilltop town in the
volcanic area west of Lyon as probably the closest big city,
and then down on an eight hundred kilometer diagonal into
(39:12):
the Pyrenees to s Jean Pierre de Paut, which is
the town where most people would start walking if they're
walking the Camino to Santiago, the Camino Froncaise.
Speaker 2 (39:24):
But you didn't stop with that being your only walk,
did you? Now? No, I did not know you made
this this other epically long one where you went from Canterbury,
but Canterbury, United Kingdom, not Canterbury South Island. Although you know,
as a as a proud to Targo boy, I would
always advise walking out of Canterbury South, preferably South, preferably yeah,
(39:47):
across the White Taki, but no Canterbury, United Kingdom. You
walked all the way to Rome.
Speaker 3 (39:52):
All the way to Rome, yeap too, and well two thousand,
four hundred and seventeen kilometers to be precise.
Speaker 2 (39:59):
I bet you counted you everyone, yep. And this has
become the foundation for your book which you've put out
called The Only Way Is Up on Foot to Rome. Yes,
it's a great.
Speaker 3 (40:12):
Book, thank you. Yes, it was a great walk. Yeah,
it's interesting. I mean, you know, I'd done a couple
of other other shorter in invert coomas walks across France.
But and I pretty much said to my I said
to Stephen when I came back from that first one, Look,
I'm I'm really sorry, but this is this is so good.
I'm going to have to do one of these every year.
(40:35):
So yes, I but I came to the Via front
Egina from Canterbury to Rome sort of, you know, just
by a path of inevitable momentum really as it happened,
just things along the way that led me to the
idea that, yeah, to the obvious idea that that would
be one to do, and so so I decided. So
(40:59):
I decided to do it. And having done two already,
I gaily thought, yeah, I know what I'm doing. I
can do this. You know, I don't think I necessarily
lot it easy, but you know, there was a lot
of planning evolved, but it's very easy to talk the talk,
and then you know, you arrive at the start as
I did, and realize you've got to actually walk the talk.
(41:21):
It's a long way.
Speaker 2 (41:22):
And how long did it take? You've actually got it
in here? It's this number of days, wasn't.
Speaker 3 (41:26):
It took me almost one hundred days ninety nine days
of walking, about ten rest days in there as well.
Three months, yeah, but three and a half months. Yeah, yeah. Yeah.
Speaker 2 (41:38):
We've got a copy of the book to give away,
and we're actually going to give it to one lucky
caller tonight. So get in on the fine Z eight
hundred and eighty ten eighty with your either questions or
any of the any of the stories, with your own
experiences with either Parkinson's or diagnosis that you would like
to share with us. I guess the main question is is,
(42:02):
you know, considering that you have Parkinson's, you have this condition,
is how much did they affect you to be able
to do or not do this kind of level of exercise.
Speaker 3 (42:13):
Yeah, so far, touch Wood, not much at all. That
The remarkable thing that I discovered quite early on is
that I don't experience Parkinson's and my symptoms of Parkinson's
in the same way at all when I'm doing this
long walking in nature as I do in daily life.
I'm not saying they're not there. It's still there, you know,
(42:37):
and it is progressive, but I definitely think it wards
it off. And I think it's a combination of, you know,
a physical benefit in the in the mobility, and the
engagement of the brain and the whole package. You know.
I'm I'm still doing a lot of unraveling of what
that is, you know.
Speaker 5 (42:57):
I sort of wonder whether there's something to the rhythm
or the routine of it being in a way very simple.
Speaker 3 (43:02):
Yeah, I think so there's a lot in it. There's
there's definitely the walking, There's there's the rhythm, there's a routine.
There's the of all the extraneous stuff that life delivers
you around it, and some of that's a privilege frankly,
you know, to do without that life admin for you know,
whatever period of time, somebody else is effectively picking it
up for you. Some you know, I'm very mindful of that.
(43:23):
But also, you know, in a perverse way, what I
really discovered with this walk, this long walk to Rome,
is that, you know, because that was across what four countries,
three different languages, your brain is having to multitask and
juggle at the end of a day of you know,
maybe thirty thirty five kilometers of walking when you're knack it,
(43:47):
and then you have to do like chores, and then
you're around it in the table, you know, having to
chat with people and you're having to organize your accommodation
for the next day or the next few days and
make phone calls and maybe French or maybe Italian, and
in your brain copes with it in a way that
my brain increasingly can't with Parkinson's right in normal daily life,
(44:09):
like I am starting to now struggle more with complexity,
with decision making, you know, with motivation to actually start things.
But yeah, I definitely, I don't find that a problem
at all on the road.
Speaker 5 (44:25):
I just want to point out you just sort of
offhandedly said, you know, thirty thirty five.
Speaker 2 (44:30):
K's a day.
Speaker 5 (44:33):
To begin to get the show. I was talking about
the walk that my girl did yesterday, the Reday for Life.
None of her friends can walk today, and they walked
about thirty five to forty ks. So, you know, the
other obvious thing is you must have been extremely fit.
A couple of weeks into this. Your body would be
in a very different state than it is now too.
Speaker 3 (44:52):
Yeah, definitely, I mean you build up to that obviously.
I do think now there is a core level of
fitness that you retain, and there's a muscle memory. But certainly,
I like to say, I mean, as I talk about,
you know, Pilgrimage and aversi Commas walking, it comes in thirds,
and for me the French Engine, it was the first
(45:13):
third was a mental game, you know, but your body
is sort of warming up, and then the second third
was kind of a physical game, and the third was
a spiritual zone. And that's when, yeah, you shed you
shed everything because you're physically fit and you're no longer
even thinking about walking. I mean, the incredible thing is that, yeah,
(45:33):
you can just We had days where we had one
day at least where you know, we were expecting to walk,
i know, seventeen kilometers and then I realized I've got
the bath wrong, and you know it was it was
actually twenty seven and blink and eyland. It was like, oh, yeah,
that's all right, there's another ten case, you know, that's okay.
(45:56):
We had another day where, you know, we had planned
some accommodation, it was going to be a short day,
and when we arrived there having left late, oh, terribly sorry,
We've somehow managed to double book and the only accommodation
they could find was another sixteen kilometers further on, and yea,
I said, well you can catch a train, you know.
And this time I don't think even thought about it.
(46:19):
It's like, oh, I'll just have lunch and that'll be fine,
and off that another sixteen kilometers.
Speaker 2 (46:25):
You'll just bed keep on, keeping on, keep on keeping on.
I promised to go straight to the lines, and I will.
We're here with our guest tonight. Jennifer Andrews As. She's
also the author of the book The Only Way Is
Up on Foot to Rome and if you want to
know where you can get the book from. It is
sold at all independent book shops around New Zealand, at
(46:48):
least the good ones. And you can also go onto
her website. My Parallel lives dot com has a lot
of l's in it. I'm not going to spell it all,
but you can google it. Just just google it my
Parallel lives dot com.
Speaker 5 (47:05):
I'll also put it on the Nutice Club Facebook.
Speaker 2 (47:06):
Oh you're a good man. Thank you. Let's go to line,
shall we. Let's go to Ben. Good morning to you, Ben.
Speaker 4 (47:14):
Oh, good morning, and first time call her here.
Speaker 2 (47:17):
Welcome to the show.
Speaker 4 (47:19):
Oh, thank you. Parkinson's. Where do I start? I'm the Caerra.
My wife was diagnosed with it, possibly about the year
twenty twelve. She was a very fit girl, into walking,
(47:42):
race walking, never smoked, had the occasional drink, was a vegetarian,
lived her life very very well. And she was diagnosed
with it and walking was her thing, and she still walked.
(48:06):
And she refused to give and to Parkinson's. She said,
I'm not telling anybody I've got parkinson So I just
completely refused to give into this disease. I'm carrying on walking,
which was great, which she did well. That was good.
That went on for possibly five years, and we did
(48:27):
some long walks five years five sorry, two hours, our
and a half two hours, two and a half hours
was great. And then one day she had a fall. Now,
people with Parkinson's when they fall can't save themselves. They
(48:50):
can't put their hands out, They just fall flat on
their face. And she had this terrible fall which she
fractured a jaw and all the side of her face.
And anyway, she ended up in the North Shore Hospital
in quite a state. She was in there for a
bit two weeks she came out and after about six
(49:12):
weeks she started walking again. That was great. About a
week after that, all we're walking along and I heard
this noise and I looked down and there she is,
flat on her face on the pavement again. This time
she broke a wrist in me and she had damaged
(49:35):
to head, the full head, which had to be stitched.
So she recovered from that, but that didn't stop her walking.
She carried on. But now I thought, well, I can't
let her walk by herself. I've got to do something
(49:56):
to stop a fooling. So we walk hand in hand now,
and I noticed that. As the years have gone on,
it's got to the point now where when she's at
home she staggers. She can't she's got the house set up,
(50:16):
so she gets up from a chair and she'll walk
to the table and grab it, and then she'll walk
to somewhere else and grab it. And that's her life now.
She's virtually house bound. She can't she can't go out
side by herself. But I take her outside and she likes,
(50:37):
she likes sitting outside watching the people and everybody. Everybody
knows her. And we live on the North Shore and
take her down for coffee in the mornings and we
sit there and have coffee and people come up and
talk to Margie, and everybody knows her. But she's even now,
she's her condition now is starting to deteriorate, and it's
(51:02):
getting harder and harder to look after her. But I
don't know what the solution is or what the outcome
of it's going to be. She's but strangely enough, when
I take her down to the park some days she
can't get out of the car, And I get her
(51:23):
out of the car, stand her up, lock the door
in the car, grab her hand and as soon as
we start walking, she starts to walk almost normally. Usually
she's when she's at home, she staggers, but she starts
to walk normally, well nearly normally, you know, and we
walk for forty five or fifty minutes a day.
Speaker 2 (51:47):
Well, Ben, this is I mean, just just listening to
what you've outlined here, you know, it's very very clear
that first and foremost Margie is phenomenal and also obviously
a very brave, determined individual. But also I just wanted
to say, so are you Well.
Speaker 4 (52:10):
It's it's what you do. It's what you've got to do,
you know, It's just it's a choice.
Speaker 2 (52:15):
It's a choice, Ben, and you and you guys have
made a wonderful choice as as a couple. And jeez,
you know, you know, I don't want to say that
you should you should have picture perfect people, but you
know that's unconditional love and action right there, my friend.
Speaker 4 (52:33):
Well we'll be married sixty years this year.
Speaker 2 (52:36):
There you go.
Speaker 4 (52:37):
And but it's hard, it's really hard people forget about
the care.
Speaker 2 (52:43):
Well, look, I think it's wonderful that you've you've told
us your experience there too, But I would say that
you know, the support that you give to Margie would
be immense as well. And you're right though too. You know,
people do forget about the cares and there's always so
many people and or you know, there's that one special
person like there is in your case, who's there quite
(53:04):
literally holding their hand, taking one step after the other
with them. So thank you for mentioning it.
Speaker 4 (53:11):
Yeah, yeah, I just thought one other thing before I go.
Please it's it people, It's I don't know if it's well.
I haven't actually tried it with Margie, but I've read
a bit about it, and walking backwards is very beneficial
to people with Parkinson because it's switches in terms of
(53:36):
brain round the brain's actually working in reverse by walking backwards.
If you understand what I mean.
Speaker 2 (53:43):
Jenner, you've got some experience with this.
Speaker 3 (53:45):
Yeah, I've heard that. I haven't actually tried that myself,
but I have heard it, and certainly what I was
going to say by way of comment is that to
the same sort of effect, I have definitely noticed that
that perverse effect which you mentioned in the context of
getting out of the car and then suddenly walking better
in the park. What my experience is that if I'm
(54:06):
going to fall over and In fact, the one time today,
thank goodness, that I have fallen so far, it's going
to be on a flat pavement. I do really well,
you know, in a really weird way when I'm on
really difficult terrain or unfamiliar terrain, because your brain is
triggered differently. I think in your brain you have to
(54:28):
concentrate on where you're putting your foot, and maybe there's
a bit of muscle memory in there as well. But yeah,
I definitely have noticed the difference with that.
Speaker 4 (54:39):
Yeah, that's yeah, that's correct, because I noticed with Margie. Well,
now that's she trips over her feet. I don't know
if you've know that you're with your condition, but she
actually trips over her feet. But if she's walking on
the road, she'll be walking fine, and then all of
a sudden, there's no reason at all, she'd trip over
(55:01):
a foot and you've got to grab her otherwise she's down.
But if she's on the grass where the terrain is
a she walks a lot better.
Speaker 3 (55:11):
Yeah, yeah, I definitely noticed that. I mean I scuffed
my foot quite a lot, and it's because, yeah, you
can't you increasingly can't judge the lifting of your foot
in proportion to the relative to the to the ground.
And a lot of times, because you know you're on
the pavement, you're just not thinking about it. You're taking
it for granted all of a sudden, even when you
(55:32):
think you're concentrating. Whereas, yeah, when I'm out crossing mountains
or walking on you know, leafy tree, rooty terrain, yeah,
I do really well because my brain is just having
to concentrate all the.
Speaker 4 (55:46):
Time, right right. The other thing like it. As Maggie's
conditions progressed, she's surfaced now from hallucinations. She sees people,
and especially at night, but she's not she sees like
(56:07):
a a little girl. She quite often says, oh, I'll
leave the life on for the little girl. Or how
many people for dinner tonight? Are we having three? Or
she sees this little girl, or she sees an older woman.
And I've actually read a bit about it, and this
as Parkinson's sort of gets worse, this is a common
(56:30):
factor with people with Parkinson's that they do actually hallucinate
and see things that aren't actually there.
Speaker 2 (56:38):
Yeah, you're not in your head here, Jennifer, that this
is quite something common in terms of Parkinson's conditions.
Speaker 3 (56:45):
Yeah, it's a fun thing Parkinson's. I got to tell you,
there's so many aspects to it, and yeah, that's definitely
that definitely does come with it. I haven't had too
much of that yet, but I've had that a little bit.
Speaker 2 (56:58):
Ben, first and foremost just want to say you have
been an outstanding caller. So considering this is your first
time calling us, I can only say gold star. We've
really really appreciated you calling in and sharing, you know,
your experience, so both you and Margie and so from
everybody here, just wanted to say wishing you guys nothing
(57:18):
but the best, and we would like very much to
give you the copy of the book. Thanks so much
for calling. Ben. It's yeah, I think you know we've
really touched on you know, as much as we've talked
about your story tonight, I do feel that we've really
touched on the cares as well, and that there's other
people that you know are part of this and actually,
(57:41):
as we talked about with Ben, quite literally hold your
hand as you go on this journey. Yeah, which is
interesting because I've got a text message here from Beverly,
and Beverly just asks the question, does Jennifer go on
these walks overseas with a group of people, and so
I guess that's an interesting part, like is it just
you out in the wilderness, you know, which kind of
(58:01):
then makes the idea of like Ben was talking about,
if you were to have a fall or something, you know,
like how does it work.
Speaker 3 (58:07):
Yeah, that's a great I have done these walks in
a bunch of different ways. The first couple that I did,
I did set out on each of them with somebody else,
which was great. Certainly for those first couple of ones,
I felt like I needed a bit of a comfort
blanket because you know, I was kind of I wasn't
sure how I was going to deal with them. The
big one that my book was about from Canterbury, I
(58:30):
deliberately set out on that by myself because I felt
like that's what I needed at that point. I needed
to actually prove to myself that I was still independent
and do that sort of stuff while I felt I
still could and that I didn't need someone else necessarily
there all the time. And you know, but of course
you meet other people along the way. I knew that
(58:51):
I would be intersecting with people at various points that
I that I knew along the route, and then as
it happened, I met an amazing woman and an Australian
woman along the way who was also walking to Rome,
and we ended up walking probably the last two thirds
of it together, which was a complete game changer. It
(59:12):
was just an absolute gift. And yeah, we just we
just laughed and laughed and laughed, and you know, and
she she she was you know, she she knew about
the Parkinson's and she was kind of but you know,
we were just walking, but she there was somebody there.
Speaker 2 (59:28):
What does the future if you look like at this point,
are you going to keep doing a big giant walk
every year and pump out another books has happened? The
new the new gig that you've given yourself.
Speaker 3 (59:37):
They'll definitely be walking, not so much a book every time, No,
definitely not. There's a lot of work in that and
sometimes you just want to walk. And I've already done
like a few other ones where I've yeah, I'm just
I'm just walking in some of those with other people.
So yeah, as long as I can, I'll be walking.
Speaker 2 (59:57):
And I hope that you know, in terms of doing
this as well, you know, you're you're still having to
actually manage the condition in terms of that, and when
it comes to a lot of the research around parking,
is there developments being made in terms of treatment and
has that got any kind of speed?
Speaker 3 (01:00:13):
Yeah, yeah, there's I mean there's lots of stuff going on.
I mean, the bulk of it, you know, probably just
is you know, random or isn't going to go anywhere.
There's a small amount of stuff that you know, potentially
leads to breakthroughs, and when you actually get a major breakthrough,
everyone will hear about it, so you know, it's pretty limited.
(01:00:34):
But there's money being thrown into all sorts of research,
and there are a few interesting things going on, particularly
around the use of stem cell treatments. So yeah, probably
putting the most hope in that area of research.
Speaker 2 (01:00:51):
And I suppose the other thing which I wanted to
ask you about before we wrap up tonight is for
anyone who's been listening to this who may either know
somebody who might be in an early early stage of
diagnosis or is supporting somebody who maybe care for somebody
with Parkinson's, is there much of like a Parkinson's support
(01:01:13):
network in New Zealand.
Speaker 3 (01:01:14):
Yeah, Parkinson's New Zealand is a great organization. It's a
very small organization doing a huge amount of work. Parkinson's
is the fastest growing neurological condition in the world, but
gets very little funding. So yeah, a very small organization,
but they have Parkinson's educators who are just making a
(01:01:38):
huge difference. So you know, it's we're underserved. We need
more neurologists, we need more of everything. But what's great
about the educators is that you know, I have the
educator's mobile phone number, and if I can't see the
neurologists for another six months or another twelve months, if
(01:01:58):
I need to, I can. I can text the educator
with a question, including around medication, and she can be
in touch with the neurologists on my behalf with a
quick question. So yes, it's fantastic.
Speaker 5 (01:02:12):
And that's Parkinson's dot org dot nz For anyone who
might want to look.
Speaker 2 (01:02:16):
There, Kyle chuck it on the Facebook page.
Speaker 3 (01:02:19):
That'd be great.
Speaker 2 (01:02:22):
Look, it's just been absolutely fantastic conversation. And so I
want to say, Jennifer Andrews, thank you so much for
being our guest this week here on the Nutters Club.
Speaker 3 (01:02:32):
You're welcome, Thanks so much for hearing me.
Speaker 2 (01:02:37):
Well, that's it for this episode of The Nutters Club,
thanks very much to our guest Jennifer Andrews, as well
as psychotherapist Carl McDonald. If you liked what you heard
and you think it might help someone out there, then
please share this episode on your own channels or with
family and friends. And if you ever want to be
part of the show, give us a call or a text.
(01:02:58):
When we broadcast live on News Talk SAIDB eleven pm
Sunday nights, New Zealand standard time. Check out Newstalk SIB
dot co dot nz for local frequencies or a link
to the live stream. A big thanks to New Zealand
on air for their ongoing support in making the show.
Take care and always remember the world is a better
(01:03:21):
place for you in it life. It isn't easy, it
is however worth it.
Speaker 1 (01:03:32):
For more from News Talks at B, listen live on
air or online, and keep our shows with you wherever
you go with our podcasts on iHeartRadio.
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