Ruth
- Description
- Reviews
- Citation
- Cataloging
- Transcript
An articulate but apparently anxious woman in her thirties speaks directly to the camera, and to her unseen interviewer, describing her medical history. She seems intelligent, perceptive, engaging a bit manic perhaps. In reality, Ruth has endured the disabling physical and mental symptoms of Parkinson's disease for more than twelve years. That she is able to think and speak coherently, and to be relatively free of tremors, she tells us, is due to a procedure called Deep Brain Stimulation (DBS) in which electrodes are implanted deep in the brain and a device similar to a heart pacemaker is implanted under the skin. Using a hand-held device almost like a television remote, she can switch off many of the symptoms of the disease that have kept her a virtual prisoner in her own body for years:
'It was miraculous...He told me to start talking and suddenly for the first time in many years I could talk non-stop, I could think coherently, my words came out coherently and I carried on talking absolute crap the whole time until the Professor said, 'OK, Ruth, now you be quiet and let me do the talking'.'
The moment when she calmly switches off the DBS device in front of the camera is shocking, and it is anguishing to watch her begin to tremble, and to see her verbal abilities begin to deteriorate before our eyes. This straightforward production offers unique insights into the workings of the human brain, and an unusual opportunity to view the impact of modern biomedical technology in action.
'Ruth's highly personal story has universal relevance for Parkinson's patients and their loved ones. Recommended. Three stars.' -Video Librarian
'The value of Ruth lies in having a Parkinson's patient talk candidly about the disease and about the deep brain stimulation procedure. Perfect for classroom showing. A valuable addition for all college level health sciences classes. Recommended.' -Educational Media Reviews Online
Citation
Main credits
Frantzis, Michael (film director)
Rees, Hefin (film producer)
Other credits
Editor, Olivier Kaempfer; director of photography, Robert Wilton.
Distributor subjects
Bioethics; Chronic Illness / Heart Disease; Disabilities; Fanlight Collection; Genetics; Health Care Issues; Medicine; Neuroscience and Neurology; Psychology; Women's Health; Women's StudiesKeywords
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[sil.] You were dancing last week?
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Um,
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who with, what was happening? Well, I
was at a party and the host is a mad,
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I\'m not sure if it\'s a salsa dancer or a ceroc
dancer but basically he goes absolutely berserk.
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And in fact, many, many years ago,
he and I won a dance competition
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and then... He used to be a dancer?
Er, no [crosstalk]... No, I… I, I, I,
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but I\'ve always loved dancing. Right.
And we went along to some event
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and part of the event was a dance, a
mini dance competition and we won
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it because I, I\'ve always loved dancing.
And then I went to a,
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a, er, he, he, he had a party a
couple of weeks ago and I went along
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and he was doing his mad dancing as
he always does. And I, and, and,
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and I was really enjoying myself at the party
because this particular friend who\'s name is Ian.
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He, he gives an annual New
Year\'s Eve party and for,
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for, and the last two or three New
Year\'s Eve\'s I used to go along and, and
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unfortunately I, I couldn\'t take part
in the party… Is this because...
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[crosstalk] it was because... … [crosstalk]because the disease had gone
too far or... Yes. Yes. I really couldn\'t enjoy the party. The party
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just completely knocked me out and I would
go along to the party. And after about five
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minutes I would just go and find
an empty room and lie down.
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And I, and I, I, I would just be spread-eagled on
the floor, unable to move, feeling like bloody
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awful. I\'ve often heard, erm, I\'ve often
heard, some of the reading I\'ve done on this,
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people have talked about it as like an imprisonment, I mean,
is that something you\'d say was fair in those moments when
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you were lying on the ground. It, it, it
absolutely is. It\'s a total imprisonment, if you
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think of, if you think of an imprisonment
as, as, as having very few choices
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, in fact having virtually no choices,
of being confined to the house,
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under house arrest, yes, it
is an imprisonment. Becaus-
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and, and, and the other imprisonment is psycho,
is psychological, you have the psychological
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imprisonment. Er, for, the
fact that you feel you can\'t
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participate and, and, and, and there are
other times when you\'re with a crowd
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of people and everyone is talking and
laughing and joking and you can\'t get
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your words out. You can\'t get your ideas out,
you can\'t get your thoughts out erm, and, and,
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and that makes it a psychological and, and, and [crosstalk] [crosstalk]
How about them, how... [crosstalk]... and, and that makes it a social
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imprisonment. How did your peers and your friends,
over time, react? I mean, did they see you as,
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as someone with a disease? I mean, did you have
issues where this, this almost clouded who you were?
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Particularly... Yes. …when people saw you as... Yes,
unfortunately for the majority of them, it did.
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Unfortunately, the majority of friends
and even family just couldn\'t
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cope with it and it isn\'t a criticism of them.
Or, or, although it was very hard for me.
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I mean, I remember there was an incident
once I was sitting with my brother
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and my niece and a couple of friends. And,
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and we were all sitting round talking and then I felt
I wanted to say something and I couldn\'t get the
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bloody words out. It was an absolute nightmare and
I could see that they were looking very upset
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and then they started to talk amongst
themselves and I went a bit berserk.
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And I said to them... Berserk, how? Wu, wu...
Angry with words, or... Yes, angry with words.
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And, and, and I said to them I don\'t
care how bloody awful It is for you,
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it\'s 20 times worse for me and I\'m gonna get these effing
words out... Yeah. …even if it\'s the last thing I do.
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And I did get them out.
So now probably, we, we
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started by talking about dancing which is just...
Yeah. …which is just fantastic. It, it. It was.
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Especially as I was wearing my boots at the time
and I wasn\'t completely on. And I was kind of, oh,
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incidentally, let me explain what I mean by that. In Parkinson\'s
Disease, you have, what\'s called, the on and off condition.
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And the on condition is like, when everything
is normal and you\'re, and you\'re moving
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perfectly. You\'re functioning perfectly,
everything works perfectly. When you\'re
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off, obviously it\'s the opposite of on but
having said that, since I\'ve had this procedure,
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the on and off stages are completely
different. They, they, they, they\'re in no way
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, no way are they like, the, the, the, the way they used
to be but to get back to what you were saying about,
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you asked me about the dancing. I was, I was
wearing my boots, I was wearing my lovely stiletto
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boots and I was teetering away
because I wasn\'t completely
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balanced. Yeah. And yet for some reason I could
do all this mad dancing. This, this, thanks
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to the procedure? Absolutely. Which is what?
I mean, we, we\'ve all learnt about it. But
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tell us about it, how you, what it is and, and then about going
through that procedure. Okay, well it\'s called Deep Brain
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Stimulation and what, and, and, and what
actually happens is that I\'ve had electrodes
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implanted deep into my brain, into a
part of the brain called the subthalamic
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nucleus. Don\'t ask me where it is
because I haven\'t actually visited it.
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But it\'s somewhere down
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there. Have you seen pictures of it at least? Yes,
yes, I\'ve seen pictures and it looks very nice
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but I wouldn\'t recommend it to everybody. Describe,
let\'s say, the day of it, the operation and… Okay,
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the operation. Well, first of all, I have to say,
I was absolutely gagging for this particular
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piece of surgery. For two
reasons, one, because it was
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, it was, I, I, it is fully reversible.
And the other reason
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why I wanted it is because it\'s non-ablative
which means th-it doesn\'t cut anything
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away. It, it doesn\'t destroy anything. Yeah.
So, the, the morning of the operation
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I was woken up and I was taken up, up.
The nurse took
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me and showered me and put, and, and, and dried me.
I wasn\'t allowed to do anything not that I could
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because I was off medication anyway. And
then, then she took me back to the ward
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and she put those funny white stocking things on. Yeah.
And when I said they wouldn\'t catch on she really
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didn\'t know what I was talking about. It was all a bit
too dry. It was, just a little bit. Understandably
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so. Well, anyway, and then, and,
and then at about half past seven
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my close family came along to see me
and that was very nice and they bought
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along some things I\'d asked for, which
was Book of Psalms and a [crosstalk]
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photo... You took that in with you? Is that... Yes,
absolutely and I also took in a photograph of a memorial
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stone to my, to, to to the people
in my father\'s town who\'d been
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murd-, massacred during the war and I also
bought, took in with me a photo of my
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mother\'s mother, my grand-, my other
grandmother. So I felt really protected
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ooh and I also wore, erm, a, erm,
a red band, the sort of thing
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that Madonna and her acolytes are
flogging now. And erm... This is 12 years
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ago by the, no, you were diagnosed, the operation was in September,
is that right? The operation was last September, September
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2004. Right. So it\'s just after a year,
it\'s, it\'s, we are now in October
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2004, 2005 and the operation,
I, I, I had the operation in
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2, September 2004 and I was
diagnosed with Parkinson\'s
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in 1993. 12 years ago.
So, it\'s, but to go back
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to it, the operation it was, wha-, wha-, what happened in
theatre? What was the sensation because we know there\'s
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going into the brain from our perspective. What particular
sensation s did you go through in the procedure? To
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be absolutely honest with you, by the time they
actually, by the time they actually started on
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the procedure itself, I, I was
knackered because I\'d actually been
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through quite a lot in the morning
because it started off with, erm,
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being, being wheeled downstairs and then I had my head
shaved. And they wouldn\'t let, they wouldn\'t give me a
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mirror. I wanted to see but they wouldn\'t give me
a mirror, anyway, so they, so, so they shaved my
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head and then they put this, it,
I, I, it\'s like a metal frame
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thing over my head and I don\'t really know
what that was for. I, I, I think, I, I
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think it was to hold my
head in place and also
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I think to show the coordinates and
then they took me. They took me
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down to, to have an MRI because I had to
have an MRI so that, so that Professor
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Hariz could see where to actually plot
the coordinates for the electrodes
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and, and, and if I\'m actually honest,
the worst part about that whole day was
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going into the MRI because they pulled me and
they pushed me. I can only say it in Yiddish,
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you have to excuse me. Yeah. They schlepped (ph) me and
they shtood (ph) me and, and, and, and, and the thing is,
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I, I, I, I was lying in the MRI and I had
to keep really really still because if
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you move, shunk, you have to do the whole thing over
again. Yeah. And I really couldn\'t bear that. Yeah.
00:09:05.000 --> 00:09:09.999
So I had my first MRI, er, and
then, I, I, I, and, and then I, I
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was taken to the recovery room while, while
the Professor plotted the coordinates
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and then they came and collected me and they
took me into the theater. Now, erm and by this
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time I was really really tired and I
went in there and it was a bit spooky
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because, because I saw all
my doctors were pre, pre,
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Doctor Limousin and Doctor Tisch and they looked
different because they were all, cos they were dressed
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in their theater garb and they stood
on either side of me and it was really
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nice because I really felt that I was with
friends. And Professor Hariz was standing behind
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me and erm, and, and then they started.
I, I, actually
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think the most painful thing of all was
having the local anesthetic because
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I, because this whole procedure was under local
anesthetic. You were awake? Yes, I was awake the whole
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time. I wouldn\'t, I didn\'t want
to miss a thing, do me a favor.
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Absolutely not, course I had to be awake
and so they started on the drilling
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and I heard this drilling. But it was ki-,
but, but it somehow felt kind of disconnected
00:10:15.000 --> 00:10:19.999
from me and we\'re drilling and we\'re drilling and
we\'re drilling and then Professor Hariz started
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shouting, barking orders at people. And I
just... Not you? No, absolutely not at
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me. And I got the feeling that
something wasn\'t quite to order
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and then, and we\'re waiting and waiting,
er, because there was actually a
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halt, a pause in the proceedings and, and, I
thought I\'m not going to ask anything, because I,
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because I sensed that there was a bit of tension
in the air. And it transpired that the,
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that part of the drill had actually broken and
they went and they had to go and get a new
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bit. And Professor Hariz said to me,
“You\'re a very strong woman.” Wha, wha,
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wha, wha, what could I say?
So I didn\'t say anything,
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er... We, the drilling, we\'ve
often talked about the drilling
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and then the electrodes go in and
the sensation, I mean, you, you\'ve
00:11:10.000 --> 00:11:14.999
used the word miracle with me, I mean. It, it, it
absolutely was a miracle because once Professor
00:11:15.000 --> 00:11:19.999
Hariz had finished the drilling then
they started to put the electrodes in
00:11:20.000 --> 00:11:24.999
and I was a bit apprehensive because me, being me,
I was a bit worried that maybe it wouldn\'t work
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and so they, erm, Professor
Hariz put, put the
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electrodes in and Doctor Limousin was holding my left
hand, Doctor Tisch was holding my right hand and then
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suddenly I felt myself moving.
And it was really bizarre
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because I was just wriggling about. Now, you see,
wriggling to you probably doesn\'t mean anything
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but to somebody like me, wriggling was
an action that I hadn\'t been able to
00:11:50.000 --> 00:11:54.999
do for many many many years. And,
and, and, and the two doctors
00:11:55.000 --> 00:11:59.999
were performing the various tests on my
limbs and it was, it was miraculous.
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And then Professor Hariz told me to
speak, he told me to start talking, well,
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I only, I did what I was told.
And, and, and it was
00:12:10.000 --> 00:12:14.999
amazing, it was actually like a tap, I, it was
as though, I, it was as though I was a tap
00:12:15.000 --> 00:12:19.999
and I was switched on because suddenly for
the first time in many many years I, I
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could talk nonstop. I could think coherently,
my words came out coherently and I carried on
00:12:25.000 --> 00:12:29.999
talking absolute crap the whole time
until Professor Hariz said, “OK, Ruth,
00:12:30.000 --> 00:12:34.999
now, you be quiet and let me do the
talking.” So I shut up, erm, erm,
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and it was as though, the whole thing was just amazing.
I didn\'t even mind the fact that I was absolutely
00:12:40.000 --> 00:12:44.999
soaking wet because, because every time
Professor Hariz screamed out Swedish
00:12:45.000 --> 00:12:49.999
or Sweden, I would get, I would get a bucket
of cold water thrown over my head. So much so,
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that when they\'d actually finished and,
and, and they went out. And incidentally,
00:12:55.000 --> 00:12:59.999
watching the way the Professor and his team worked
really was like something on telly because there
00:13:00.000 --> 00:13:04.999
really is the, the strict hierarchy, just like
you see in all, in all the hospital soaps
00:13:05.000 --> 00:13:09.999
and, and the anesthetist came along and
stood behind me and went, “Oh my God”.
00:13:10.000 --> 00:13:14.999
And I thought, “Oh God, what on earth has happened now?” and
I thought to myself, “Oh God forbid there\'s a massive hole
00:13:15.000 --> 00:13:19.999
in my head.” It wasn\'t that. It was that I was
lying in like a swimming pool of water from
00:13:20.000 --> 00:13:24.999
, from this whole procedure. And, and the reason
being that, erm, you have to keep the brain
00:13:25.000 --> 00:13:29.999
moist. Yeah. And, and that was probably why I also had
to have my head shaved. How long did all this last?
00:13:30.000 --> 00:13:34.999
It didn\'t take very long actually.
I think it,
00:13:35.000 --> 00:13:39.999
it did, it probably felt
longer than it took.
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All I can say is that we, we went
down about 8 o\'clock and about
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2 o\'clock I was wheeled back
into theater to have the
00:13:50.000 --> 00:13:54.999
actual pacemaker inserted. Yeah. So,
all in all, it didn\'t, it didn\'t take
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that long because after inserting the
electrodes I was then, I, I, I then had
00:14:00.000 --> 00:14:04.999
to go back for another MRI. And I was shoved
and I was pulled and here and there and
00:14:05.000 --> 00:14:09.999
I had to keep quiet and I had to
keep still and then after the, after
00:14:10.000 --> 00:14:14.999
Professor Hariz had, had checked that the
electrodes and everything were in place.
00:14:15.000 --> 00:14:19.999
I was wheeled back and, and I
remember seeing the clock above
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the theater door and it was just about two
o\'clock when I went in to have this done.
00:14:25.000 --> 00:14:29.999
So… And that was that. So what\'s, what would
you say, the main thing, post-procedure.
00:14:30.000 --> 00:14:34.999
Is there anything that struck you, I mean, erm, talking
miracles, what\'s changed, anything changed in you
00:14:35.000 --> 00:14:39.999
or... Everything has changed, I mean, that,
that is a really difficult question. What
00:14:40.000 --> 00:14:44.999
is the thing that has changed the most.
I suppose
00:14:45.000 --> 00:14:49.999
that I feel well.
00:14:50.000 --> 00:14:54.999
Normality? Is that a word you would use?[crosstalk]
Yes. Normality is, normality is actually
00:14:55.000 --> 00:14:59.999
brilliant word because wha, ab,
around about the time I had the
00:15:00.000 --> 00:15:04.999
surgery there was celebri-, the, the, there was
one of these ” I\'m a Celebrity, Get Me Out Of
00:15:05.000 --> 00:15:09.999
Here” things and I started watching it and
I loved it because to me that represented
00:15:10.000 --> 00:15:14.999
normality. Because I hadn\'t been able to watch any
of the others because I just hadn\'t been able
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to sit down and physically watch
them, watch because, because
00:15:20.000 --> 00:15:24.999
it was just so uncomfortable for me and I missed
out on a whole load of so-called normal things.
00:15:25.000 --> 00:15:29.999
I missed out on all the chat, all the
gossip that people had about, er,
00:15:30.000 --> 00:15:34.999
er... Which you can do now? Absolutely
and that\'s why to me all of those
00:15:35.000 --> 00:15:39.999
programs represent normality and I won\'t have a word
said against them. Have you recovered a voice, is that
00:15:40.000 --> 00:15:44.999
fair? Absolutely. I absolutely have
recovered my voice. So much so
00:15:45.000 --> 00:15:49.999
that in fact I have now become quite assertive.
I mean, in, in the old days, I used to be very
00:15:50.000 --> 00:15:54.999
aggressive but now I\'ve become assertive
without being aggressive. And I have found
00:15:55.000 --> 00:15:59.999
my, and, and, and I think now I have found my
true voice even so much so that I\'m now, I\'ve now
00:16:00.000 --> 00:16:04.999
actually started to write and, and... Your
ambition? Do you have an ambition to do with this?
00:16:05.000 --> 00:16:09.999
I guess you can call it that? Well, yes, my ambition
is to actually write a film. I have an idea
00:16:10.000 --> 00:16:14.999
in my head that I want to write a film about
and, and, and that is what I would like
00:16:15.000 --> 00:16:19.999
to do. So, erm, can you show us the device
that, I believe it\'s the device that controls
00:16:20.000 --> 00:16:24.999
this, or... OK, well, well, well, I
00:16:25.000 --> 00:16:29.999
have a remote control which just allows me
00:16:30.000 --> 00:16:34.999
minimal, it gives me minimal
control and what it does. Here,
00:16:35.000 --> 00:16:39.999
I have the on and off switch and,
and then I have two buttons,
00:16:40.000 --> 00:16:44.999
ah, ah, on either side. The buttons
00:16:45.000 --> 00:16:49.999
on the left control the right side. Yeah, yeah
[crosstalk]the other side is ...of the body.
00:16:50.000 --> 00:16:54.999
Erm, and the buttons on the right control the left side of the
body and with these I can increase and decrease the voltage
00:16:55.000 --> 00:16:59.999
and I can also switch the unit on and off.
And what I have to do... Shall we
00:17:00.000 --> 00:17:04.999
do that? If you like. Yeah. OK, what I\'m
going to do, I\'m going to position this
00:17:05.000 --> 00:17:09.999
so that this part of it actually
goes on my battery which is over
00:17:10.000 --> 00:17:14.999
here. I\'m gonna switch it off.
00:17:15.000 --> 00:17:19.999
And it\'s switched off. Do you
feel immediately different?
00:17:20.000 --> 00:17:24.999
Is it the same, or is it... I don\'t
actually know if it\'s psychological
00:17:25.000 --> 00:17:29.999
but I\'m starting to feel a
bit, kind of woozyish. Right.
00:17:30.000 --> 00:17:34.999
Thoughts the same? Thoughts are the same.
So far, I\'ve,
00:17:35.000 --> 00:17:39.999
so far, erm, I think I\'m the same although,
00:17:40.000 --> 00:17:44.999
I, although I can feel myself shaking.
I can feel, and I
00:17:45.000 --> 00:17:49.999
can feel myself going
off which is the whole
00:17:50.000 --> 00:17:54.999
intention. Is it, is it, erm,
in, I understand, we\'re never
00:17:55.000 --> 00:17:59.999
going to get back to quite how bad it was. Oh
God forbid. Yeah. We\'ll never reach that stage.
00:18:00.000 --> 00:18:04.999
God forbid a million times.
I mean that was,
00:18:05.000 --> 00:18:09.999
I wouldn\'t even wish it on my worst enemy.
It\'s the feeling,
00:18:10.000 --> 00:18:14.999
I\'ll tell you the worst
feeling of all, it\'s the
00:18:15.000 --> 00:18:19.999
feeling that God forbid, you\'re going to be
trapped in that forever and there\'s absolutely
00:18:20.000 --> 00:18:24.999
no hope and that is the
worse feeling of all.
00:18:25.000 --> 00:18:29.999
Erm, and that\'s why I say that if,
00:18:30.000 --> 00:18:34.999
if, that if we have to have these bloody
awful conditions. At least, thank God,
00:18:35.000 --> 00:18:39.999
we\'re, we\'re, we\'re living in a time when
things can be done to alleviate them
00:18:40.000 --> 00:18:44.999
but I have to make one thing clear,
all, although it is probably apparent.
00:18:45.000 --> 00:18:49.999
This procedure doesn\'t cure the
Parkinson\'s. Yeah. The Parkinson\'s
00:18:50.000 --> 00:18:54.999
is still going on but it greatly
relieves it and it really is a blessing.
00:18:55.000 --> 00:18:59.999
It is a miracle, I mean,
to be honest with you
00:19:00.000 --> 00:19:04.999
when people marvel at me, I, I,
I, I always say it\'s a tribute
00:19:05.000 --> 00:19:09.999
to the man upstairs and the medical
technology and the medical team.
00:19:10.000 --> 00:19:14.999
My medical team. We use the word miracle
which can be quite religious and spiritual.
00:19:15.000 --> 00:19:19.999
Erm, was that part of it? Has something
changed spiritually? Is that,
00:19:20.000 --> 00:19:24.999
was that word miracle that you use as a scientific
miracle or is it got a greater meaning?
00:19:25.000 --> 00:19:29.999
I actually
00:19:30.000 --> 00:19:34.999
feel quite uncomfortable with
that kind of question because,
00:19:35.000 --> 00:19:39.999
I have to explain why, because
00:19:40.000 --> 00:19:44.999
I, I just have this thing
about organized religion.
00:19:45.000 --> 00:19:49.999
I just feel, in the main, that organized
religion has always been a divisive
00:19:50.000 --> 00:19:54.999
power, a way of controlling people.
But I, I,
00:19:55.000 --> 00:19:59.999
I actually, but, but I actually feel that
00:20:00.000 --> 00:20:04.999
my relationship with God is
separate from, from my religion.
00:20:05.000 --> 00:20:09.999
But, but but having said that, because
00:20:10.000 --> 00:20:14.999
of, having said that, erm, I\'m very, I,
00:20:15.000 --> 00:20:19.999
for me, my religion is
more of a cultural thing.
00:20:20.000 --> 00:20:24.999
But
00:20:25.000 --> 00:20:29.999
this is, this is the effects of
00:20:30.000 --> 00:20:34.999
coming off now, erm, I\'m, I\'m, I\'m,
I\'m, I\'m having difficulty expressing
00:20:35.000 --> 00:20:39.999
myself. Are the thoughts clouding or is it not coming through your…?
The thoughts aren\'t really coming through [crosstalk] … … at all?
00:20:40.000 --> 00:20:44.999
No. Right, OK, So, it\'s, it\'s...
No, I\'m talking about, I, I,
00:20:45.000 --> 00:20:49.999
I\'ll tell you what it is and this was
something that I discovered a few years ago.
00:20:50.000 --> 00:20:54.999
When I\'m off, I find it very difficult
00:20:55.000 --> 00:20:59.999
and, and it\'s all subconscious but,
but, but, but, but my subconscious
00:21:00.000 --> 00:21:04.999
will not allow me to deal with
difficult or contentious issues.
00:21:05.000 --> 00:21:09.999
Now I,
00:21:10.000 --> 00:21:14.999
I, I was going to say that I could
start singing a nursery rhyme to you.
00:21:15.000 --> 00:21:19.999
I can talk about any old
bit of crap and, and, and
00:21:20.000 --> 00:21:24.999
well what I\'m trying to say is that
00:21:25.000 --> 00:21:29.999
if, if, that, if I now want
to talk about total non,
00:21:30.000 --> 00:21:34.999
non, -controversial subjects I can do it.
00:21:35.000 --> 00:21:39.999
Erm, but it\'s when I, but it\'s when I
00:21:40.000 --> 00:21:44.999
want to say something that might
be construed as being difficult
00:21:45.000 --> 00:21:49.999
or rude or unpleasant. That\'s
when I have difficulties
00:21:50.000 --> 00:21:54.999
expressing myself. Is there fear?
00:21:55.000 --> 00:21:59.999
There isn\'t, yes,
00:22:00.000 --> 00:22:04.999
sometimes there is fear.
Sometimes there is fear that
00:22:05.000 --> 00:22:09.999
for some reason I won\'t be
able to reverse the procedure.
00:22:10.000 --> 00:22:14.999
In other words, if, if, if
let\'s say I turn myself off
00:22:15.000 --> 00:22:19.999
there\'s a fear that if I turn
myself on again I won\'t actually
00:22:20.000 --> 00:22:24.999
be on properly. And, and, and, and there
is always, and, and, and I always have the
00:22:25.000 --> 00:22:29.999
fear in the back of my head that
God forbid one day it\'s just
00:22:30.000 --> 00:22:34.999
not going to work. There,
there is always that fear.
00:22:35.000 --> 00:22:39.999
[sil.] Does, does the
fear actually get less
00:22:40.000 --> 00:22:44.999
now that, you know, as the stimulation keeps working?
Is it something you\'ve learned to live with more?
00:22:45.000 --> 00:22:49.999
Something you\'ve learned to accept or...
Not really because although to the outside
00:22:50.000 --> 00:22:54.999
world everything might seem
wonderful, for me, it, I, I,
00:22:55.000 --> 00:22:59.999
I, have had the condition much, far
longer than I\'ve had the stimulation.
00:23:00.000 --> 00:23:04.999
I\'ve only had the stimulation for
a year and I\'m worried every
00:23:05.000 --> 00:23:09.999
time it doesn\'t seem...
Every time I\'m not perfect,
00:23:10.000 --> 00:23:14.999
I, I, I, I have a fear that
maybe it\'s going to disappear
00:23:15.000 --> 00:23:19.999
and that fear will take
a long time to dispel.
00:23:20.000 --> 00:23:24.999
Erm, is it, do you feel
that your, that your
00:23:25.000 --> 00:23:29.999
personality is not coming out but is there
hidden and that the disease coming back is
00:23:30.000 --> 00:23:34.999
clamping it again? Is, is that fair? I
wouldn\'t go so far as to say that at
00:23:35.000 --> 00:23:39.999
this stage because fortunately although
00:23:40.000 --> 00:23:44.999
I might not appear to be perfect all
the time. I might not appear to be on
00:23:45.000 --> 00:23:49.999
all the time, the offs are so
different from how they used
00:23:50.000 --> 00:23:54.999
to be but really I suspect I\'m
spending too much time examining my
00:23:55.000 --> 00:23:59.999
navel and I have to just get on with it.
And just accept that
00:24:00.000 --> 00:24:04.999
there are days that are going to be better and there
are days that are not going to be so good. And I
00:24:05.000 --> 00:24:09.999
have to stop beating myself round the head
with it because we English are terrible,
00:24:10.000 --> 00:24:14.999
you know, we apologize for everything.
If we knock into somebody if somebody
00:24:15.000 --> 00:24:19.999
knocks into us, we apologize to them and there
are times when I feel that I almost have
00:24:20.000 --> 00:24:24.999
to apologize for not being perfect all the
time. And it\'s something tha-, it\'s something
00:24:25.000 --> 00:24:29.999
that I\'m really trying to fight
against, I, I\'m not fighting
00:24:30.000 --> 00:24:34.999
the disease because I feel that\'s
a total waste of energy. I, I\'m
00:24:35.000 --> 00:24:39.999
trying to learn to live with the
disease and trying to learn to
00:24:40.000 --> 00:24:44.999
not, not fight it, but
00:24:45.000 --> 00:24:49.999
turn it round. So that
it doesn\'t, so that as
00:24:50.000 --> 00:24:54.999
much as possible it isn\'t controlling me,
but what I do try, what I do have to
00:24:55.000 --> 00:24:59.999
learn to fight is this English
thing of apologizing for the way
00:25:00.000 --> 00:25:04.999
I am. This is the way I am
and, and until I accept
00:25:05.000 --> 00:25:09.999
I, I, until I accept that I have
to accept it, I can\'t expect
00:25:10.000 --> 00:25:14.999
the whole of you to accept it. And if they don\'t,
if they don\'t accept it, then fuck ‘em. Is,
00:25:15.000 --> 00:25:19.999
is this something, I mean, a lot of, we, we
talk quite seriously but is there something
00:25:20.000 --> 00:25:24.999
banal that happens, I mean, just something that you\'ve thought
of post-surgery that suddenly made you think that you, something
00:25:25.000 --> 00:25:29.999
that you couldn\'t do before or what was the first thing
you did when you came home with the stimulant? Oh my
00:25:30.000 --> 00:25:34.999
God, of, you\'re not going to believe this and I can\'t believe
I\'m going to say it but er, the first thing I did was the
00:25:35.000 --> 00:25:39.999
washing up because it was so wonderful
to be able to sit down and have a
00:25:40.000 --> 00:25:44.999
meal and sit at the table for the whole
duration of the meal and then get up
00:25:45.000 --> 00:25:49.999
and join in the general
family life of just clearing
00:25:50.000 --> 00:25:54.999
away. And when my nephew wanted to shove me out
of the way to do the washing up, I wouldn\'t let
00:25:55.000 --> 00:25:59.999
him. Because, because it\'s all
these, it\'s all these little things
00:26:00.000 --> 00:26:04.999
that we take for granted that until
you\'ve lost them, you don\'t realize
00:26:05.000 --> 00:26:09.999
how much you really appreciate them.
Have you
00:26:10.000 --> 00:26:14.999
, have you left behind all those relationships
that suffered as a part of the disease or
00:26:15.000 --> 00:26:19.999
have you rediscovered them?
Well, I don\'t, I, I,
00:26:20.000 --> 00:26:24.999
I don\'t actively seek them out.
00:26:25.000 --> 00:26:29.999
Erm, but, I suspect
00:26:30.000 --> 00:26:34.999
it\'s because I, I, I well, let\'s
put it like, let\'s put it
00:26:35.000 --> 00:26:39.999
like this, if I felt there was any value in the
relationship I would seek it but there obviously
00:26:40.000 --> 00:26:44.999
is none, so fuck ‘em. Have they sought
00:26:45.000 --> 00:26:49.999
you? Sorry? Have they sought you?
Well, they, some of them
00:26:50.000 --> 00:26:54.999
have but I refuse to be drawn
and it isn\'t, it isn\'t
00:26:55.000 --> 00:26:59.999
a question of cutting of my nose
to spite my face because people,
00:27:00.000 --> 00:27:04.999
one spends time with people with
whom they feel comfortable. And,
00:27:05.000 --> 00:27:09.999
pardon me, if you don\'t, why
should I, life, life is too short
00:27:10.000 --> 00:27:14.999
and I\'ve realized that I\'ve
got 12 years to catch up on.
00:27:15.000 --> 00:27:19.999
I mean, it struck me only
the other day just, just
00:27:20.000 --> 00:27:24.999
how much I have missed out on. I
missed out on, like a whole decade
00:27:25.000 --> 00:27:29.999
and I\'ve got a hell of a lot of catching up
to do. The first thing that I\'ve got to do
00:27:30.000 --> 00:27:34.999
and I have to say this, and,
00:27:35.000 --> 00:27:39.999
and if it\'s politically incorrect
I don\'t care, the one, the
00:27:40.000 --> 00:27:44.999
one absolute certainty that
00:27:45.000 --> 00:27:49.999
they know about the effects of the procedure
is that because you\'ve stopped all
00:27:50.000 --> 00:27:54.999
of these dyskinesias which are
the terrible, erm, involuntary
00:27:55.000 --> 00:27:59.999
body movements and because you have more
of an appetite, you cannot stop eating.
00:28:00.000 --> 00:28:04.999
Everybody who has this procedure eats like
an absolute bloody pig. And putting on two
00:28:05.000 --> 00:28:09.999
stone is a minimum, I think I\'m actually going for
the record, I think I\'m gonna try for four stone
00:28:10.000 --> 00:28:14.999
and it\'s just awful. But the first
thing I have to do now is, i… i… is
00:28:15.000 --> 00:28:19.999
lose weight and, and,
00:28:20.000 --> 00:28:24.999
and yet I think to myself, well,
life is too short. I should
00:28:25.000 --> 00:28:29.999
, I, I should indulge my appetite
but life isn\'t about total
00:28:30.000 --> 00:28:34.999
self-indulgence, is it, as much as
you might like it to be. But having
00:28:35.000 --> 00:28:39.999
said that, I have lost a decade and I have
to got, I, I\'ve got to make it up. This is,
00:28:40.000 --> 00:28:44.999
this, this, me talking to you now,
your state is nowhere near as bad
00:28:45.000 --> 00:28:49.999
as Parkinson\'s at its worse pre-surgery.
Oh my goodness, there was, I
00:28:50.000 --> 00:28:54.999
tell you what, if, if we were pre-surgery and I was
off, there I s absolutely no way, first of all,
00:28:55.000 --> 00:28:59.999
first of all there is no way I\'d be sitting up like this.
There is no way I\'d be moving, I\'d be moving my arms like
00:29:00.000 --> 00:29:04.999
this, ok, it\'s true that I\'m not moving
my arms as instinctively, actually, maybe
00:29:05.000 --> 00:29:09.999
I am, I don\'t know. Erm, but,
00:29:10.000 --> 00:29:14.999
and there is no way I could have any kind
00:29:15.000 --> 00:29:19.999
of conversation with you because I used
to feel so bloody, so awful and it\'s a
00:29:20.000 --> 00:29:24.999
feeling that I can\'t explain because, because
it is a feeling unlike any other, it isn\'t
00:29:25.000 --> 00:29:29.999
a headache, it isn\'t feeling sick.
It\'s just a total, it\'s a total
00:29:30.000 --> 00:29:34.999
lack of energy but it\'s
a lack of energy that,
00:29:35.000 --> 00:29:39.999
that you never thought you never had.
And the other thing is,
00:29:40.000 --> 00:29:44.999
I don\'t know if it\'s just me or
if it\'s all Parkinson\'s people
00:29:45.000 --> 00:29:49.999
but unfortunately when I was off in the old
00:29:50.000 --> 00:29:54.999
days, my, my tolerance levels was
00:29:55.000 --> 00:29:59.999
like minus zero 100 percent.
Of what? Of? O, o, o,
00:30:00.000 --> 00:30:04.999
of anything, I mean, I would scr-, I, I,
I, I would be, I would become really nasty
00:30:05.000 --> 00:30:09.999
and I would be very rude and I would shout
00:30:10.000 --> 00:30:14.999
and erm, I have to admit that even now
00:30:15.000 --> 00:30:19.999
when I\'m not so on and people do
bloody stupid thing s to irritate
00:30:20.000 --> 00:30:24.999
me I do find it very difficult to control
myself. But I am getting better.
00:30:25.000 --> 00:30:29.999
Stimulation, I mean, so, you, it\'s
00:30:30.000 --> 00:30:34.999
given you the ability to recover. Do you think it will
give you the ability to recover those twelve years?
00:30:35.000 --> 00:30:39.999
Oh damn, absolutely. I think,
I think the only impediment,
00:30:40.000 --> 00:30:44.999
the only impediment to my recovering
those last 12 years is me whether
00:30:45.000 --> 00:30:49.999
, whether I will have the
determination to go through
00:30:50.000 --> 00:30:54.999
with it and the energy to go through with it
because I\'m also 12 years older. 12 years older
00:30:55.000 --> 00:31:00.000
[sil.]