0:00

Hello everyone, I'm Rory Catlin-Jones and before we

0:02

get underway with the last episode of this

0:05

series, Mailbag Edition, we wanted to bring

0:07

you up to date with a couple of

0:09

things that have happened since we recorded it.

0:12

And with me I've got a dynamic

0:14

duo, Gillian and the judge to help.

0:16

Now Gillian, you were the driving force

0:18

behind the Parkie Charter which we took

0:20

to Downing Street a few weeks ago,

0:22

but since then we've had a really

0:24

important meeting so explain what happened. We

0:27

have indeed, we met with Victoria Atkins

0:29

who's the Health Secretary and

0:32

we were all really genuinely very surprised

0:34

at how interested she was in the

0:36

issue. You know we're a

0:38

bunch of hardened hacks on the whole plus

0:40

the judge who I think would qualify as

0:42

a hardened judge, I don't know what

0:44

the phrase is there, and we

0:47

were all expecting very little indeed so

0:49

maybe our expectations were too low. But

0:51

what happened was that we went in,

0:53

I was off actually. You froze,

0:55

you froze. I froze, I had

0:57

to almost be forced into the room and

1:00

she was terribly embarrassed because it was on

1:02

the ninth floor we had to give past

1:04

various desks to get to the room where

1:06

it was happening. And by

1:08

the time I got there you know I was

1:10

so exhausted so I think there

1:12

she was very embarrassed about that

1:14

and she genuinely wanted to sort of listen to what

1:17

we had to say so that gave us sort of

1:19

a head start in a way which

1:21

was both fortunate and unfortunate. But I

1:23

thought she seemed genuine, she seemed interested

1:26

and I was most impressed that she

1:28

wanted to ask some intelligent questions instead

1:31

of those obvious ones. So for example when we

1:33

said there are too few neurologists, I

1:35

mean that is pitiful, 44th out of 45 countries in

1:37

Europe we

1:39

are in terms of the number of neurologists per

1:41

head, she wanted to go right

1:43

back and find out why is that, you

1:46

know why are people not becoming neurologists. And

1:48

she actually she had her civil servants in the

1:50

room and she gave them tasks. Exactly

1:52

each minion got something to do. So

1:55

and then and then this was the bit where you

1:57

could have knocked us all over, she said she'd like

1:59

to meet... again and we all thought she'll stay

2:01

in the winter when they obviously won't be in

2:03

power anymore. But no, no, she said in the

2:05

summer she wants to meet and it was her,

2:08

her instigation said I'm very keen to actually see

2:10

a date out of them for that. It was

2:12

a bit discouraging how how

2:14

poorly briefed she'd been. She had been

2:16

very poorly briefed and Caroline, head of Parkinson's UK,

2:18

pointed out she was with us that it's

2:20

pitiful that they don't know the numbers and the

2:22

issues themselves. We shouldn't have had to bring this

2:25

up. They don't even know how many people have got Parkinson's.

2:27

Or where they are. Or where they

2:29

are. But I think that doesn't that mean

2:31

that we have an opportunity here because if they're

2:33

so badly briefed on these sorts of illnesses, then

2:36

if we make a noise and we start shouting,

2:38

and they are willing to listen, then

2:40

that really gives us an opportunity here.

2:42

Now, we had an episode earlier

2:45

in the series on benefits and the

2:47

hopes that parties have to jump through

2:49

to get them. And Nick, the judge,

2:51

most in there have been a number

2:53

of developments, which you have found disturbing,

2:55

haven't there? Yes, a few days ago

2:57

on the 19th of April, in a

2:59

major speech, the Prime Minister unveiled what

3:01

he called as a package of welfare

3:04

reform measures to tackle the unprecedented rise

3:06

in economic inactivity and to

3:08

ensure our benefits system is better targeted at

3:10

those who need it most. So what

3:12

they want to do is basically, so far as

3:15

parties is concerned, there are two aspects which are

3:17

of great concern. First is

3:19

the proposal to reform entirely

3:21

the fit note

3:23

process, which the Prime Minister

3:26

insists in calling the sick note process

3:28

to take away the ability to write

3:30

fit notes away from GPs and to

3:32

give it to a specialist agency who

3:34

will no doubt be hard

3:36

nosed and trained to have as

3:38

their default position or refusal. And of

3:40

course, they won't be the people who

3:42

actually know the person who's applying for

3:44

the fit note. And I can see

3:46

that for those parties who work, but

3:48

who because of the nature of their

3:51

condition, have to ask for fit notes from

3:53

time to time, I mean, it's in the nature of things,

3:55

this is going to be a very retrograde step.

3:58

The second pick, right? No,

4:00

it's really concerning about PIP.

4:03

So PIP, if people remember,

4:05

is the Personal Independence Payment?

4:07

Independence Payment, yes. A non-means-tested,

4:10

non-taxable cash payment which

4:12

is based on an assessment of the functional

4:14

needs of the claimant. Yeah. It is not

4:17

based on your condition. It's based on your

4:19

needs, irrespective of what your condition might be,

4:21

okay? And that is what it always

4:23

has been from the moment of its origin in 2013. They

4:27

want to change this to make it, first of all,

4:29

condition-based so that they'll have a

4:31

list of conditions. They made it absolutely

4:33

clear that the one thing they really

4:35

want to take away is where the

4:37

cause of the impairment is

4:40

psychological. They want to take that

4:42

away. They had to go back in 2017.

4:44

You remember I spoke about that? Yes, I

4:46

do remember. They really want to remove psychological

4:48

causes. And I just don't understand why a

4:51

psychological cause isn't just as valid a reason

4:53

for seeking a Personal Independence

4:55

Payment. It's not just an independent payment

4:57

as a physical cause. But the fact

4:59

is that the amount of money that

5:01

is being spent on PIPs is going

5:03

up, and it's expected to double in

5:05

the next five years to reach nearly

5:07

£30 billion. But if

5:09

that is the consequence of the law that

5:11

exists at the moment, then well, then so be

5:13

it. That's just one of the things that the

5:16

taxpayer has to suck up. And it's not as

5:18

if these people haven't made their contributions through their

5:20

taxes. Anyhow. Just to rebalance that

5:22

a little, isn't there some good news

5:24

in the announcement? I saw something suggesting that they

5:26

may be looking at the issue of the passport

5:28

that we've raised, not because we've raised it, but

5:31

because it's on the agenda in any case. There's

5:33

a lot of the challenges of talking about it

5:35

for a long time. Okay, well, that's all we've

5:37

got time for. Thank you both. Now, let's get on

5:39

with this weekend as well. You're

5:52

listening to Movers and Shakers, a podcast about

5:55

living with Parkinson's. The

5:57

show is sponsored by Judge Nick Mostyn's

5:59

Old Chambers. and by the generous

6:01

contributions of private donors. Hello

6:11

and welcome to Movers and Shakers. And

6:13

once again, we're in the pub. I'm

6:15

Rory Catlin-Jones, and with me around this

6:18

very cramped table are... Jeremy Paxman. Mark

6:20

Waddell. Paul Mayhew Archer. Gillian

6:22

Lacey Solomon. Nicholas Moreston. And

6:24

this week, our subject is you.

6:27

We've been sifting through the mountains of

6:30

emails, website comments, telegrams and other Mrs.

6:32

Eustenters. And we've chosen some

6:34

of the very best and most thought-provoking.

6:36

We're going to read out two each.

6:39

So, seconds out, round one. Gillian, the

6:41

driving force behind our Parkie Charter. Kick

6:43

us off. Well, I've

6:45

got one about the very first point

6:47

on our Parkie Charter, which is about

6:50

speedy specialists. We feel that we've

6:52

been all, I think, collectively really shocked at

6:54

the fact that people just can't see specialists

6:57

around the country. And one of the first

6:59

things we're calling for is that that should

7:01

come to an end. This is from Heather

7:03

Ireland. She says, we're 99% certain that my

7:06

husband has Parkinson's. Our GP referred

7:08

him to see a neurologist in July 2023. We

7:12

are still waiting, she says. I phoned

7:14

the relevant hospital to be told there was a 38-week wait.

7:17

Oh, God. But wait a minute, not

7:19

to be seen, but to come top

7:22

of the list to be offered an

7:24

appointment to future day. Oh, God. I

7:26

mean, what you do, it's just hopeless,

7:28

hopeless. A 38-week wait to get to

7:30

the top of a queue before you join another queue. Exactly,

7:32

exactly. And God knows, you know, she says

7:34

we're frustrated and despairing. I mean, despairing is

7:36

a very strong word and I'm not surprised

7:38

at all. She says we're sorry to sound

7:40

so negative and acknowledge there are many people

7:42

who are also in our position, but don't

7:44

know where else to vent our spleen, so

7:47

to speak. Good place to vent it

7:49

here and I really hope we're successful in this one.

7:51

What you've missed out is the line where she

7:53

says, I think, needless to say, due to the

7:55

increase in severity of symptoms, we have made an

7:57

appointment privately. You're right. I have missed that out. that's

8:00

what happened to you, wasn't it? Yes, that

8:02

happened to me. I went to private

8:04

for the initial appointment, got

8:06

one when I wanted and then was very,

8:08

very lucky to be accepted back into the

8:11

NHS. This is basically covert

8:13

privatisation. It is, isn't it? You wonder whether

8:15

it's deliberate and even if it's not deliberate,

8:17

they're probably not that disappointed. But even if

8:19

you get an appointment, that's not the end

8:21

of it because I have with someone in

8:23

Oxford who recently got in touch to say

8:26

that they'd got an appointment and then the

8:28

appointment's been moved back twice so

8:30

that they're actually now going to be seen in June

8:32

2025. Oh my goodness. So they've got a two year

8:36

wait and they're already finding that they want

8:38

to change their medications. So no wonder we're

8:40

putting that as number one in our charter.

8:42

But someone I spoke to said the importance

8:44

is to keep badgering. Just because someone offers

8:46

you that appointment, you don't have to accept

8:48

it and you can say. I mean

8:51

the whole system says flawed in that they won't even

8:53

talk to you so you know

8:55

they just send you a date through the post which

8:57

you can do or can't do and then you have

8:59

to ask for another date and then another date if

9:01

it's not one that you can make. So nobody actually

9:03

talks to you anymore about anything. Now Mark,

9:06

your turn. You've got another message which has

9:08

something to do with the charter. Yeah that's

9:10

why the charter so needed its message from

9:12

Linda who's a carer for her husband. The

9:14

charter made me cry. Everything in it is

9:16

a must. Care for people with Parkinson's and

9:19

their carers is so sketchy. Everything

9:21

is so hard work. Prescriptions from

9:23

GPs identifying deterioration with everyone

9:25

presenting differently is a nightmare. If it

9:27

is to ANE or admitted onto a

9:29

ward, nightmare. Perhaps training the NHS from

9:31

the top to the bottom of the

9:33

NHS should be a must. So

9:35

that's why we want the charter. Why

9:37

it's I think absolutely vital. But I did

9:40

also want to read one out from somebody

9:42

who said they couldn't sign the charter. They

9:44

objected to it and they were saying that

9:46

the NHS is very strapped for cash and

9:48

they go on. Of course it's not a

9:50

competition but every chronic illness in this country

9:52

is crying out for more cash, more

9:55

specialist stuff, bigger pieces of cake

9:57

even though we know there are

9:59

already only crumbs left. I don't think

10:01

that's a good reason for stopping saying that. That

10:03

doesn't seem to have any logic at all because

10:06

it seems to me even more important

10:08

that we fight our corner at the size of

10:10

the case. We generally are

10:12

quite a big, important, as it were, condition

10:14

with a very small voice. Exactly. Yeah, I

10:17

think we're a Cinderella. I mean, you can

10:19

see why heart disease and cancer have such

10:21

a big voice because they are the biggest

10:23

killers. I think we're a Cinderella because it's

10:25

not curable at the moment and because it

10:28

doesn't kill you. And I think those two

10:30

things make it difficult in the charity sector. And

10:32

unsexy. Yeah. But it

10:34

is a competition, isn't it? They say it's not a

10:36

competition, but it is. So that's the way the charities

10:39

behave, whether you like it or not. I know you've got to be

10:41

in there. Absolutely. Someone

10:43

told me it's very important to be polite at all times, be

10:45

very polite, but you get people on your side. So copy in

10:47

your MP and your writing to them. Yeah.

10:50

Yeah. Nick Mostyn,

10:52

Nick the Judge Mostyn, you put together what

10:54

turned out to be a surprisingly cheerful episode

10:56

about palliative care and the legal arrangements for

10:59

our demise. We were all a bit gloomy,

11:01

but we ended up rather enjoying it. And

11:03

so did the listeners. And you got an

11:05

email. Nick Wasn't exactly gallows, Hugh. It was

11:07

we approached the question of our ending in

11:09

a positive way. But as a result, we

11:11

got I got this excellent email

11:13

from a young doctor called Alex. I'm

11:16

a junior doctor. I've been interested in elderly

11:18

and palliative care for a few years. But

11:20

more recently, I started working in Parkinson's. I

11:22

started listening to the shows a way to

11:24

try and understand the perspective of people living

11:26

with Parkinson's. And I've really enjoyed it, as

11:28

well as learning a lot. But this week's

11:31

palliative care episode was my favorite

11:33

yet. I talked to people

11:35

with Parkinson's a lot about palliative care

11:38

and advanced care planning. And I felt

11:40

in your episode, you perfectly summarized the

11:42

worries and preconceptions people often have. Your

11:45

guests did a great job of explaining and trying

11:47

to break down what palliative care and advanced

11:49

care planning are really about. I

11:51

will definitely be pointing people in the direction of

11:53

this episode. A massive thank you for all that

11:56

you do. As a doctor, I've

11:58

learned so much from your podcast and it's changed

12:00

the way I practiced. I have to say, I've got

12:02

a great friend who's a palliative care consultant and she

12:04

picked us up on Twitter. She thought this was the

12:07

top episode. Yeah, but

12:09

you've got to stop writing these letters yourself. Yeah. But

12:13

Jeremy, on that matter, I've

12:16

given you a really terrible job

12:18

reading another letter praising the judge's

12:20

episode. Indeed, yes. This is a

12:22

letter which says that the judge,

12:25

among others, I mean, among others,

12:28

frankly, that sits here for the others. It

12:31

was a great episode, it said. I

12:33

really liked the emphasis on this being

12:36

liberating and an opportunity for

12:38

people to make sure that their wishes

12:40

were being respected. As Judge Mostyn, here

12:42

you go again. As Judge Mostyn highlighted

12:44

at the end, doing some of this

12:46

planning in advance means that when the

12:49

end does come, the focus can be

12:51

on comfort, dignity, and doing what you

12:53

love rather than talking about finances and

12:55

so on. So the judge

12:57

has his uses, I suppose. I

13:00

would like you to get it past the censor,

13:02

that particular episode. Rory thought it was going to

13:04

be dead boring law in action stuff, but in

13:07

fact, it's true. We did have to, at one

13:09

stage in one episode, stop you from reading out

13:11

an entire judgment, which

13:13

we felt was not that entertaining, but there we

13:15

are. So Paul, what have you got? Well, amidst

13:18

all the praise for us, I have found some

13:20

criticism. What? What? Yes, I have,

13:22

yes. This is from Naomi who says, now

13:24

listen to this, we all listen

13:27

to your podcast, but I find myself

13:29

getting annoyed that only the milder end

13:31

of the Parkinson's experience is explored in

13:33

any detail. Can you devote some episodes

13:35

to the later stages of Parkinson's and

13:38

include mention of the most severe symptoms

13:40

in every episode? For example, what tech

13:43

interventions are aimed at helping those people?

13:45

What's discussed in their doctor's visits? Do

13:47

sleep or depression get worse for them?

13:49

What type of exercises can they do?

13:52

Are their partners burnt out? How

13:55

can they participate in support groups when

13:57

they can't move independently and cannot speak

13:59

easily? I think it was Gillian

14:01

Lacey Sollamarr, she says, who told a story

14:03

about attending her first support group, seeing people

14:06

in wheelchairs and thinking, this isn't for me.

14:08

She commented that those people weren't at

14:11

subsequent groups, but didn't explore why or

14:14

even theatres potentially concerning. Please

14:16

don't wait until one of you reaches that

14:18

stage before you start regularly including them in

14:21

this conversation. I think that's a bit unfair.

14:23

Well, I would have thought an episode about

14:25

palliative care and death is pretty much focusing

14:27

on the later stages of Parkinson's, wouldn't you?

14:29

Yes, but I suppose what... We're just going

14:31

to wait. It's got to carry on doing

14:33

this until we all peg out. On the

14:36

end. Go ahead. Tune

14:39

in to episode 550. Tune in to find

14:41

who's still there. I

14:45

think that person does have a point.

14:47

I mean, I shy away from the

14:49

doctor. But it's partly because we're a

14:52

bit frightened of it. Yeah, exactly. Absolutely.

14:54

Yeah. No, you put the

14:56

nail on the head. I'm going to do what

14:58

I did before with the embarrassing things. I'm going

15:00

to suggest I'm going to do an episode about

15:03

the last stages. The later stages are something they

15:05

have. And I've had Parkinson's for 14 or 15

15:07

years. So I suppose

15:09

I'm near it. No, you're there, I'm

15:11

afraid, already. I'm there. No, and so

15:13

am I. And I was so shocked to

15:15

find that. I was reading something which said

15:17

that you wouldn't have DBS unless you had

15:19

advanced Parkinson's. And I said to Mike, do

15:22

I have advanced Parkinson's? And he looked at me

15:24

as an idiot and said, of course

15:26

you do. Nick, you're not there

15:28

yet. But I think a lot of the rest of us are. I

15:31

did make the point on the world

15:33

this weekend that we Parkinson's sufferers will

15:35

not qualify for assisted dying because nobody

15:37

will give us a terminal illness. Well,

15:39

we should definitely do a few things

15:42

on that. Charlie

15:44

Ford, Lawful, which will probably be

15:46

passed, will not have intolerable suffering

15:48

as the criteria. And it will have a terminal

15:51

illness, but they'll never give us a terminal

15:53

illness diagnosis. So I think we could probably

15:55

do an episode about that. Definitely. So

15:58

in this first round, it's finally my turn. I've

16:00

got a letter in defense of the neurologist

16:03

breaking the bad news and it's

16:05

from Neil Who used to be

16:07

an ophthalmic surgeon until Parkinson's put an end to

16:09

his career and he says he was used to

16:11

breaking bad news In that job, I was diagnosed

16:13

with PD in 2015 and it put an end

16:16

to my career as an ophthalmic surgeon I'm

16:18

fully acquainted with the business of breaking bad news to

16:20

people with My

16:23

reason for writing relates to your almost

16:25

unanimous negative experience of how the diagnosis

16:27

of PD was communicated to you by

16:29

the Neurologists breaking bad news

16:31

is difficult clinical work emotionally draining

16:33

requires sensitivity in patients and the

16:36

poor neurologist is being confronted by

16:38

his or her own Impotence again

16:40

on the day of my appointment there were at least a

16:42

further half dozen patients in the waiting room Some

16:45

shaking uncontrollably another drooling in his wheelchair where

16:47

he was rising with Acetoid movement that's a

16:49

word I haven't seen before yet another was

16:51

spilling his tea which he was trying to

16:53

drink from a sippy cup All of them

16:56

had at least one haggard and exhausted looking

16:58

carer with them So, I

17:00

mean what he's basically saying is it's

17:02

difficult for the neurologist that they're only human We

17:05

should give them a break which I suppose is

17:07

bad He's saying they're down to they

17:09

do and they don't know they don't but I think

17:11

he's more saying that there is such pressure On

17:14

the neurologist there aren't enough of them.

17:16

You've got to understand that they may be having

17:18

a bad day as well Although

17:20

frankly, it's difficult to be forgiving if

17:23

it's the day that you are diagnosed

17:25

Changes your life doesn't it doesn't change their

17:27

lives so an everyday occurrence for them Yeah,

17:30

but it's interesting because I mean Oscar my

17:32

son who's doing medicine at the moment Very

17:35

subtly her heart tries to persuade him

17:37

to become a neurologist I think he's not

17:39

going to because he says it is

17:41

just bad news followed by bad news

17:43

followed by bad news Yeah, everything else people

17:45

recover but from this people don't recover,

17:48

which is very sad really Let's move

17:50

on to our second round of letters Starting

17:52

this time with mark. We did an episode

17:54

recently on getting your drugs on time in

17:56

hospital something which we didn't know much

17:59

about beforehand reaction was extraordinary. We

18:01

have lots and lots of letters about that.

18:03

What have you got Mark? This is from

18:05

Mary and she says, as the wife of

18:07

a person with advanced PD can I put

18:09

in a plea for more awareness of the

18:11

problems PD sufferers face if they go into

18:13

hospital messing up their medication? She goes on,

18:16

I stopped two different nurses, one in the hospital the

18:18

other in a care home, from giving my husband a

18:21

slow release capsule when it should have been the normal

18:23

pink and blue metaphor. How many times

18:25

did it happen when I was not there to stop

18:27

it? No wonder his brain was all over the place.

18:29

Talk to any group of people with PD and there

18:31

will be numerous accounts of disasters or

18:34

near disasters. A consultant actually said to

18:36

me when I told him this, yes that is

18:38

a problem. I'm so pleased some high profile people

18:40

are bringing this condition into the public gaze. I'm

18:42

just sorry that they've got it. As you say

18:44

so many people have written in to say yes

18:47

they share this experience. How much

18:49

we bang on about it, how much

18:51

Parkinson's UK campaign on it, nothing

18:53

seems to be done. Well one of the problems

18:55

and I didn't realize this, apparently turning

18:58

up your pills neatly separated as

19:00

I do into one of

19:02

these little containers out of their packaging

19:05

is a complete no-no. They've got rules against that, they

19:07

need to see what box they came out of. I

19:09

have to say I insisted when I was in hospital

19:11

on having my own pills. You took your own pills

19:13

in the bag? Yeah and a very large number of

19:15

trusts don't allow

19:19

that. And then I think we refuse to.

19:21

Are they going to search you? Well I

19:23

don't know. You

19:25

are under treatment, you're having other drugs

19:27

and they say you know we've got to be

19:30

in charge which would be all right if they

19:32

then did a good job but they usually don't

19:34

do a good job. NHS England are very adverse

19:36

to telling people they must reach certain standards. They

19:38

say let the best practice flow to the top

19:41

and the rest will follow. It doesn't happen. Our

19:43

expert on the episode about this was very

19:46

clear that you should take your own drugs

19:48

but if you say that they don't allow

19:50

it then you could end up in a

19:52

sort of bitter confrontation with the staff. Yeah

19:54

yeah. Which is the last thing you want

19:56

because you might be having some serious treatment.

19:58

You will be having some serious

20:00

truth. Certainly. Yeah. Nick, what's

20:03

your second choice? I have got a very

20:05

gratifying letter from a parkie called Patch Bennett,

20:07

who is the sales manager of a ski

20:09

company in Canada, who is so

20:11

inspired by our podcast that the company is

20:13

going to sponsor our show. Now I want

20:16

to take the opportunity of saying how hugely

20:18

grateful we all are to our sponsors without

20:20

the generosity of whom there would not be

20:22

a podcast at all. So whether it's Boardwave

20:25

or whether it's my old chambers and a throng

20:27

of really kind of private donors who have

20:29

been incredibly generous, as I say, there would not be

20:32

a show. So I think a quick round of applause

20:34

for our sponsors. How come a

20:36

skiing company in Canada? No,

20:39

no, because they were the company that I've

20:41

been with once, twice, and... You've

20:44

skiing? I've been skiing, but not this time. On

20:47

helicopters? Yes, not this time, but in my discussions

20:49

with them, I discovered that he

20:51

was a parkie. So being pushy and sharp elbows like me,

20:53

I asked him if he'd sponsor the show, and he said

20:55

he would. Did you view Fiorza? No,

20:58

no, no free holiday. I paid for that. He

21:01

said, hi, team movers and shakers. I'm a

21:03

fellow parkie, a regular listener of the podcast

21:05

from across the big pond in western Canada.

21:07

You all do such a fantastic job, even

21:10

Jeremy. I'm sure he means especially Jeremy, keeping

21:12

this sometimes heavy topic light, fun, and

21:15

most of all informative. Now

21:17

that you've been voted the best, so he's referring to

21:19

our great victory in the recent

21:22

competition for the Podcast of the Year,

21:24

I must say without even a mention

21:26

of Ballot rigging, the company that I

21:28

work for, CMH, and our UK agent,

21:30

Pure Powder, see this as a great

21:32

opportunity to become a sponsor. Are the

21:34

Powder Key companies are available? They are,

21:37

but to help you continue to educate

21:39

and push reform that can make the

21:41

life-changing news easier to someone who for

21:43

the first time hears the three words,

21:46

you have Parkinson's. Keep

21:48

up the great work, and the next round is on me. So

21:51

I was particularly gratified by that letter, because

21:53

it not only promises funds to a New

21:56

Year's Ball Series 4 to get

21:58

going, but it also demonstrates the glow of the world. reach

22:00

of our show and in that regard I

22:02

thought I'd mentioned I'm sneaking in a third

22:04

letter message from a retired

22:06

judge in New York another judge the

22:10

judge in New York who tells me the show has

22:12

been a real inspiration no she doesn't

22:16

has been a real inspiration and helped to

22:18

several friends of ours with Parkinson's it is

22:21

having a wide influence in the USA excellent

22:23

so legal skiing community this one is not

22:25

definitely not skier she was a judge for

22:27

25 years in the administrative court in New

22:30

York and she's um tells me that it's

22:32

influential in on the other side of the

22:34

pond so that was a gratifying couple of

22:36

letters excellent it's my go

22:38

now we had an episode which pulled

22:40

it what it did for ages about

22:43

embarrassing aspects of Parketers the rest of

22:45

us let's say we're dubious about this

22:47

but actually it turned out to be

22:49

full of fascinating stories but Jane wrote

22:51

in feeling let down three

22:54

years diagnosed the worst things so

22:56

far in capital letters is constipation

22:59

however I was disappointed with him so

23:01

but there's plenty of acknowledgement of constipation

23:03

but not much practical help what about

23:05

the whole Jillian's wait wait wait wait

23:07

wait for the rest of it listed

23:09

in the recessed we have from Jillian

23:15

I've recently been recommended magnesium supplements

23:17

by a very helpful Holland and

23:19

Barrett employee and this plus Jillian's

23:21

recommendation has massively

23:24

helped yes please can you revisit

23:26

this horror of Parkinson's more experts

23:29

and tips as it seems all

23:31

Parkies worry about this more than anything

23:33

else constipation yeah you don't need to

23:35

contribute yourself you know Jane

23:37

I don't think we're gonna be doing it

23:39

no crap fest will be too much Jillian

23:46

what have you got over the last one

23:48

may I pick up and move us away

23:50

very quickly from

23:54

constipation back to sport I

23:56

love this one this comes from Angela and

23:59

she said At the age of almost 50

24:01

and one year into my diagnosis, I've

24:03

rediscovered roller skating. She

24:06

says I realize that may be somewhat counterintuitive,

24:08

given that for me one of the big

24:10

issues is tremors and general unsteadiness that a

24:12

friend suggested it, and it was an itch

24:15

I needed to scratch. It's been a revelation

24:17

and it's quite exhilarating, not to mention an

24:19

excellent way to stay fit whilst having fun.

24:21

I think I may be concentrating on not

24:23

falling over shifted my focus and helped my

24:26

balance tremendously, as well as improving my confidence.

24:28

I wear plenty of padding if I fall

24:30

over, I simply get back up and carry

24:32

on. Appreciate it's not for everyone, but I

24:34

wanted to say to anyone who's coming to

24:37

terms with their diagnosis that while you should

24:39

know your limitations, you should also not let

24:41

it discourage you from trying new things. Be

24:44

brave, she says, which I think is magnificent.

24:46

That is magnificent. And the reason I chose, there

24:48

are two reasons I chose. First one was a very,

24:50

very personal reason, because my mother,

24:52

who passed away about three years ago,

24:55

suddenly decided when I was a teenager that

24:57

she was going to rollerblade to work. And

24:59

she was a biochemist who worked at the

25:01

John Radcliffe hospital. I almost died

25:03

of embarrassment. She would rollerblade an hour from

25:05

our house to the John Radcliffe and I

25:07

was about 13, I think. So

25:10

that was very important to me because I

25:12

feel a complete idiot now having- I can't

25:14

imagine anything more embarrassing for a 13 year

25:16

old. It was dire, I kept thinking,

25:18

what if one of my school friends sees her?

25:20

This is a level above the

25:22

embarrassing parents dancing, isn't it? Oh, more

25:25

far above. And then the second

25:27

reason was about sport, because if I can

25:29

give a little plug here for

25:31

Ping Pong, Ping Pong plug. I

25:33

have been asked, and this is quite remarkable, and

25:36

I think he's completely bonkers, but somebody called Andy,

25:38

and I don't know his last name because he's

25:40

in my phone as Andy Ping Pong, has

25:43

asked me to be his partner

25:45

in Ping Pong, his doubles partner, which

25:47

would not be so remarkable except that

25:49

he is the England champion. Oh.

25:52

What do you think of that? That's great. There's

25:54

a pro-am you're getting into. Can I make my

25:57

own business? I've just

25:59

been invited by- the Parkinson's walking football

26:01

team which plays at the Emirates Arsenal every

26:03

Wednesday. So how did you get off to

26:05

that? They've invited me along to give a

26:07

talk to them and they say I can

26:09

join in if I wish. Oh!

26:12

But he's at the Emirates. You've overplayed with

26:14

the richness here. You're going to be playing

26:16

with the England Championship. Well, I mean he

26:18

hasn't seen me play yet. Table tennis champion.

26:20

You're going to be playing at the Emirates.

26:23

Oh! Wiffwaff. Wiffwaff. Wiffwaff,

26:27

yes. Jeremy, I made you read a

26:29

rare fan letter about the judge. Not

26:32

that rare. So it's only fair to

26:34

give you a chance to

26:36

read one about yourself from Claire.

26:39

Yes, Claire says, I'm

26:41

so glad the podcast is back. I

26:43

love Jeremy. He reminds me of my

26:46

parky husband. All these

26:48

years, all the money and they haven't come

26:50

up with any answers wishing they had. Whistling

26:53

in the wind. I think she thinks her

26:55

husband is as miserable a bugger as

26:57

you are. Yeah. Yeah, she does say you

26:59

make her smile. Yeah. That's my

27:02

wife. Yes. And

27:04

finally, Paul, have you got something to

27:06

make our hearts sing? I have, yes.

27:08

It's from lovely Debbie. I

27:10

just wanted to thank you so much for the

27:13

podcast. It prepared me for what was to come

27:15

and the episode I've just listened to spoke of

27:17

the lack of knowledge when first diagnosed or the

27:19

loss of where to turn. The

27:22

podcast is definitely the first thing anyone

27:24

newly diagnosed should listen to as

27:26

it gently leads you to resources that you

27:28

can investigate at your own pace. And

27:31

it leaves you with the knowledge of where

27:33

to go as and when you are ready

27:35

for more information. I have already signed up

27:37

to take part in research and have a

27:39

library of exercises and notes on nutrition. I

27:41

am finding the podcast practical and they

27:43

have helped me to see the positive

27:45

even humor side to PD. Oh,

27:49

no, because it's all being worthwhile.

27:52

It's all been worthwhile. It's been

27:54

a bit of a self-congratulation test,

27:56

hasn't it? Particularly for you. I

28:00

haven't been anywhere near the Emirates. Or

28:02

anywhere near as high as the Emirates. Playing

28:06

ping pong with the national table tennis champion,

28:08

I feel a pygmy. Amongst

28:11

giants, yeah. Okay, well I

28:13

think that's our lot. Thanks to all those who

28:15

wrote in. Keep the emails coming. Don't

28:18

forget it's fefac

28:20

at moversandshakerspodcast.com Now

28:22

a change of tone. Listen to

28:24

this. The

28:36

world has turned into

28:40

a bit close and neverland. I've laced

28:42

the clouds with my feet. I put

28:45

all star in my pocket. With

28:49

the ties I saw, I thanked the

28:51

winds of the fall. I

28:55

spin it around, the reverie, the

28:57

day and time. Now

29:01

that is one piece of music from Tremors vs

29:03

Tremors. A pioneering project where

29:05

people's Parkinson's tremors are recorded and

29:08

turned into music. To tell

29:10

us more, we're joined by the man who's led that project,

29:12

Dr. Christian Lambert. Consultant neurologist

29:14

at Queen's Square and University College London. Hello Christian.

29:17

Hi, thank you. So what is that about?

29:21

So I spend most of my time researching

29:23

what makes Parkinson's so variable. How

29:25

it came about really is we were approached by

29:28

a group in Ocean in Berlin who had done

29:30

some previous work recording tremors and then 3D

29:32

printing them onto objects to kind of encapsulate

29:34

how the tremors impacted people's daily basis. And

29:37

they wanted to try and take the idea

29:39

to music. They're a kind of artistic group?

29:41

Yes, they're an artistic group. And it sort

29:43

of struck me instantly as a really unique

29:46

way of trying to communicate and convey the

29:48

individual nature of Parkinson's, how it affects both

29:50

the visible and invisible, and trying

29:52

to get across this sort of diverse nature

29:54

of the condition itself. And so what

29:56

we did is we developed it with members of the Parkinson's community.

30:00

We ended off inviting five people with Parkinson's

30:02

over to the centre, recording their tremors and

30:04

then talking to them and interviewing them to

30:06

find out about how the Parkinson's affected them,

30:09

their relationship with music. And then

30:11

over a six-week period, the creative

30:13

team over at the house in Berlin

30:15

took all that material and their musical

30:17

preferences and created a musical composition that

30:19

was unique to them. And

30:21

importantly, it embedded the tremor recordings into

30:23

the song itself. So it captures both

30:25

the physical aspects of the tremor in

30:27

the song, but also their relationship with

30:29

Parkinson's itself. How did it do

30:31

that? Is that the rhythm of it all? The

30:33

exact specifics were undertaken by the musical technicians, but

30:36

they essentially took the tremor gram and they used

30:38

it to... What's a tremor gram? A tremor gram.

30:40

It's a recording of the frequency of the individual's

30:42

tremor. And so if you listen to some of

30:44

the tracks, I think it's a bit more obvious

30:46

than others where you can kind of hear the

30:49

oscillations in the background. And certainly some of the

30:51

participants who took part, one of them particularly said,

30:53

you know, when she relaxed and relaxed into it,

30:55

she could actually feel her tremors going along in

30:57

time with the music. I don't suppose when you're

30:59

watching Brentford it's going to be in time

31:02

with the music? I was thinking that. Such

31:05

is my excitement about the podcast. I'm tremor-ing a bit

31:07

right now, tapping on the table. And yes,

31:10

at Brentford it's incredibly fast. So have you got

31:12

fast and slow tracks with fast and slow tremor?

31:14

I mean, I think it was more about what

31:16

was unique to the individual. I mean, at the

31:19

end of the day, what we were really trying

31:21

to capture was that there's this

31:23

really close intersection between your mood and how you're

31:25

feeling and how the physical manifestation of your symptoms.

31:27

So it may not just be tremor, it could

31:29

be any aspect of Parkinson's. But

31:32

there's a lot of things that go into it that

31:34

can make those symptoms feel worse. And

31:36

so what we wanted to try and do is

31:38

to really sort of capture that so that people

31:40

can start thinking about, you know, it's not just

31:42

about medications and pills, it's about thinking more broadly,

31:44

how do we help manage these symptoms a bit

31:46

better and different approaches for doing that. So it's

31:48

not just an artistic project, it's a therapeutic project.

31:51

The way we came at it was very small numbers of

31:53

people, very small numbers of participants. The way

31:55

we came at it was, you know, ideal day

31:57

to day seeing people with Parkinson's, giving people diagnosis.

32:00

There's a lot of misconceptions about the illness

32:02

and it comes back to how it affects

32:04

each person is unique to each person, both

32:06

in terms of the pattern of symptoms and

32:08

how it progresses over time. What

32:10

we wanted were ways to both better communicate

32:12

that, but also the idea that actually when

32:15

it comes to treatments and therapies, they need

32:17

to be tailored to each individual person. So

32:19

you've got not only the medications, but in

32:21

terms of other approaches you use to try

32:23

and help manage some of the symptoms, you

32:25

have to pick what's right for you. What

32:27

are the misunderstandings that people have? I

32:30

see people who come along to clinic who have

32:32

a... It's almost the sort of catastrophic in this

32:34

idea that Parkinson's is, you know, within a year

32:36

people are being in a wheelchair, etc. And

32:39

I think, you know, actually I look after

32:41

people at all ends of the spectrum from people who,

32:43

you know, have been diagnosed in their teens and early

32:45

20s all the way through to the opposite end. Everybody

32:48

wants to know, well, what's the future hold for me? The honest

32:50

truth is none of us know. And actually

32:53

it's this uniqueness of the condition that

32:55

we don't really understand and we need

32:57

to understand better, but also trying to

32:59

get the right pattern of treatments right

33:01

for the right person. Christian, what

33:03

do you say to those people who very

33:05

cynically say, look, you're a neurologist, you should be

33:07

doing the neurology. There are so few neurologists you

33:10

should not be focusing on the arts. I

33:12

mean, I'd counter that. So I spend most

33:14

of my time in research. I'm a researcher.

33:16

I run a large study looking at trying

33:19

to answer why Parkinson's disease is so variable.

33:21

It's a longitudinal neuroimaging study and we spend

33:23

a lot of time getting to know and

33:25

understand people in depth and about how Parkinson's

33:27

affects them to try and understand, well, what

33:29

are the underlying brain circuits and mechanisms that

33:32

drive that with the underlying thinking

33:34

that there are different types of Parkinson's at

33:36

the cell level. And ultimately you may require

33:38

different types of treatments in order to prevent

33:40

or better manage this moving forward. Your

33:43

fellow consultants, do you ever get a bit

33:45

of pushback from them? Not about this. I

33:48

mean, it's a, it was a really unique project. It was

33:50

a really unique opportunity to get involved. And

33:52

I looked at it in terms of what

33:55

was created. I mean, the idea of creating a

33:57

musical track that was unique for each person was

33:59

a huge. I didn't know what they

34:01

were going to create. In actual fact, I didn't get

34:03

to listen to the tracks until after the participants. So

34:06

I had to sit there. Participants had their headphones on

34:08

listening to the tracks. And all I could judge was

34:10

their response to the musical tracks. It was a nerve-racking.

34:12

And what was their response? They all

34:14

loved it. I mean, I think it's fair to say,

34:17

if someone makes a musical track for you, it's something

34:19

that's important. And the other thing that really struck me

34:21

was the way that each person took something different from

34:23

it. It was a very in-depth process.

34:26

We asked people to really reflect on their Parkinson's

34:28

and their journey with that. For some

34:31

people, it was coming to terms or the recognition

34:33

that it's a journey of several coming to terms

34:35

with things. And for others, it was – I

34:37

think one participant mentioned that it allowed them to

34:40

make peace with their tremor. It used

34:42

to really bother her, not the fact that

34:44

she had the tremor, but how people looked at her in public. She

34:46

felt she needed to apologize for having that tremor. And

34:48

when we spoke to her afterwards, it allowed her to

34:51

sort of reflect on that and actually say, well, no,

34:53

this is part of me being me. And,

34:55

you know, I shouldn't have to hide that

34:58

away. I like the name of your project,

35:00

Tremor versus Tremors. Sounds

35:02

like a sort of exotic dwarf case. Kramer

35:05

versus Kramer. Or ruffle versus ruffle.

35:07

But in fact, what you're doing is you're

35:09

saying there are tremors and tremors. So in

35:11

fact, the project should really be called symptoms

35:14

versus symptoms, really, because that will capture the

35:16

full array of symptoms. Isn't that what you're

35:18

trying to do? I mean, you could frame

35:20

it in different ways. I mean, I quite

35:22

like the fact that whilst we were capturing

35:24

the tremors and portraying it in that

35:27

way, it was also to interview with the hidden face

35:29

of Parkinson's. It's much deeper than, you know, you look

35:31

at someone, you see a bit of tremor, a bit

35:33

of slowness. There's so much

35:35

more going on behind the scenes that you

35:37

actually need to understand. And in order to

35:39

successfully treat the symptoms, you need to understand

35:41

the broader array of how it's affecting the

35:44

individual. We like your title. Well, thank you

35:46

so much, Dr. Christian Lambert, telling us about

35:48

Tremors versus Tremors. And let's end with another

35:50

track from that project. Can I just add

35:52

that the proceeds and royalties from the Tremors versus Tremors

35:54

are going to Parkinson's UK. So if you want to

35:56

listen to it, put it on repeat to leave it

35:59

for the evening. And

36:02

where will you find it? It's available

36:04

on Apple Music, Spotify and also through

36:06

the website. And we'll make it available

36:08

through our website, moversandshakerspodcast.com.

36:10

Thank you very much. Thank

36:12

you very much. Now let's have a quick listen. You've

36:16

been listening

36:19

to Movers and Shakers,

36:21

a podcast about living with

36:44

Parkinson's. The show is sponsored by

36:46

Judge Nick Mostyn's Old Chambers and

36:48

by the generous contributions of private

36:51

donors. The show is

36:53

produced by Nick Hilton for Podo. Our

36:55

theme music is by Alex Stubbs and

36:57

cover artwork by Till Lucat. Please subscribe

36:59

to get new episodes straight into your

37:01

podcast app and do rate and review

37:04

if you enjoy the show. We

37:06

have a brand new all singing, all

37:08

dancing website with lots more information about

37:11

each episode. You will

37:13

find it at www.moversandshakerspodcast.com.

37:17

And please email any thoughts

37:19

or questions to feedback at

37:22

moversandshakerspodcast.com.