Richard Lemmon – Living with Parkinson’s Disease

Hi everyone, this week I am chatting to my Dad!

My Dad was diagnosed with Parkinson’s disease in his early 50s and he is now 66. He is going to be chatting about how his condition started to affect his ability to work in the police force and what having his symptoms feels like.

He is speaking frankly about how Parkinson’s disease has at times changed his behaviour and personality, the symptoms you can have that many people don’t think of and how he feels about his upcoming deep brain stimulation surgery.

The 3 key takeaways:

  1. Some of the symptoms that a person with Parkinson’s disease can experience.
  2. The affect that Parkinson’s disease can have on changing a person’s behaviour.
  3. A quick overview of how deep brain surgery is sometimes used to treat Parkinson’s disease.

Next week I will be chatting with Simoney Kyriakou about rogue lead distribution firms, what the industry is doing to tackle them and her experiences with private medical insurance.

Kathryn:       Hi everyone, today I have my Dad with me.  Hi Dad!

Richard:       Hi darling.

Kathryn:       Some of you may know, my Dad has Parkinson’s Disease and we are going to do is we’re recording this episode five days before my Dad is due to have deep brain stimulation surgery for the Parkinson’s Disease.  He’s going to be telling you all about his story, the different symptoms that you can possibly have with Parkinson’s Disease, some of the complications, how it feels to be diagnosed with the condition and a few other things as well.  So, this is the Practical Protection podcast.

So for everybody listening to this podcast, it’s going to be a little bit different to usual.  So for somebody with Parkinson’s Disease of my Dad’s level, communication can sometimes be a little bit tricky.  It could be that my Dad may go off on some – potentially some long tangents.  He’s actually said to me just before we started, “If I go off on a tangent, just bring me back,” kind of thing.  There’s times he may need to pause and think about his answers sometimes and he may need to pause sometimes to have a glass of water.  I’m going to be editing the podcast just as usual but what I’m hoping to do is not do any kind of really heavy editing.  I want to leave in the pauses that my Dad makes, potentially if he repeats a conversation or if he does go off on any of his tangents, because it’s going to give you a really good insight as to what it can be like sometimes when you speak to somebody that has Parkinson’s Disease.  There may be some times as well that I will just maybe give my Dad a little nudge, refocus him and possibly even sometimes correct or try to help him recollect some of his sort of like memories of things that have happened in the past because with the different changes in the medication that you can get with Parkinson’s, it can sometimes affect the way that you see things and remember things and it may just be that I need to just help him, as I say, just focus on certain bits.  But first things today, how are you feeling Dad?

Richard:       I’m tremoring like mad at the moment.

Kathryn:       It’s quite interesting seeing you on the Zoom video I have to say.  No one else is going to get this wonderful view that I’m seeing of you.

Richard:       Yeah, ah well, there we go.  No, generally I’m okay it’s just the tremors are driving me mad.

Kathryn:       Yeah, no I appreciate that.  It’s – I know that’s the thing that sort of gets to you the most isn’t it?  I think you said that it’s – even if you sort of like look as if you’re not tremoring, inside it’s just constant, is that right?

Richard:       Yeah, yeah.  I’ve got them 24/7.

Kathryn:       Yeah.

Richard:       You know, you’ve got the external ones that people can visually see but more subtle than that are the internal tremors, you know, my insides shake all the time.  There’s no respite, it’s just there constantly.

Kathryn:       Yeah, I know sometimes when Mum said as well – sort of like maybe she’s put her hand on you or – sort of like an affectionate hand on you or something and like times that I’ve cuddled you as well, you maybe don’t look like you’re tremoring but, you know, you can feel it, you know, on the inside that your muscles are just doing that constant kind of twitching.

Richard:       Yeah.

Kathryn:       So just to sort of like to give everybody a bit of a background about you then.  So you are currently 66 and you were diagnosed officially with Parkinson’s Disease in your early 50s but I think, you know, we can all see that – all of us that have known you obviously all that time – we can see that those symptoms, the very light symptoms are actually there for many years before.  I know when I was little, so probably anywhere from about the age of you being possibly even 35 to 40, you used to do this thing that was obviously quite – it was confusing as a child but you used to do this fixated stare and a lot of the time it would be that you’d sort of like just stare at a section on the floor, you know, and you’d just stare at it for ages and also your eyes would be quiet open.  So, you know, you could really see the whites of your eyes and you wouldn’t be blinking either and, you know, obviously to me as a child it just – it was just like, “Well that’s my Dad,” you know, doing that and I think it was such a subtle thing, it wasn’t sort of like a, “Ooh, you know, Dad’s doing a fixated stare he must have Parkinson’s,” it didn’t even trigger any of us to think anything.

Richard:       I was glaring at you.

Kathryn:       [Laughs].  I think everybody listening to this is probably going to fully appreciate that that’s the case.  But for you, obviously, you know, what were for you sort of those kind of initial symptoms, the things that you sort of like remember made you sort of like think, “Hang on a minute, there’s maybe something going on here?”

Richard:       Well strangely enough, I mean Pauline used to mention it, you know, “You’re constantly staring,” and I was never aware of it, you know, I wasn’t conscious that I was staring but on reflection when you thought about it, yes I must have been.

Kathryn:       Yeah.

Richard:       You know, sat here probably 20 minutes, half hour and even longer just staring out the window at nothing, you know, and my concentration had gone, my thought processes had gone, I was just effectively stood still or sat still –

Kathryn:       Yeah.

Richard:       Glaring out of the window and one of the things that the glaring indicates is that with Parkinson’s, it’s not just a movement disorder, it has other side effects as well and anyone can get it.  There’s no sort of inherited illness came my way, it was just – I was one of the unlucky ones that it’s happened to and I forgot what I was going to say now.

Kathryn:       It’s alright.  I was going to say actually, what’s quite interesting is obviously I know Grandad, your Dad, he did used to do a bit of the staring thing and his concentration went but he was obviously quite a lot older than you in a sense when that started happening and we have no idea if the Parkinson’s maybe did come from him but I do remember you telling me that – and I did quite a lot of research, you know, obviously I did my Environmental Studies and there was a big thing about how certain chemicals potentially can lead to people developing conditions like Parkinson’s Disease and I remember you saying – ‘cos obviously you did grow up in farming country – about being, as a young lad, going into the turkey shed, having to mix some chemicals and run out as fast as you can and, you know, maybe it is something that was maybe environmental or maybe it is one of those things that you’ve developed.  I think, you know, it’s – like you say, it’s often potentially inherited but it can also just happen.

But I know we were chatting originally about – I know you were saying that you’re just – you weren’t sure about – you sort of lost your thought there – we were chatting about the symptoms, so the early symptoms.  So you obviously had that fixated glare and I think – so just for anybody who’s listening, there’s a big difference between someone kind of switching off and staring, you know, sort of like outside and maybe having a moment just with their thoughts or maybe even sometimes say switched off a bit – there is a big difference between that and what you experienced as somebody with the Parkinson’s Disease.  It is an absolute – that in a sense the body just – you just become in a sense a statue.

Richard:       Yeah, one –

Kathryn:       Go on.

Richard:       As I say, one of the things that happened, you know, it affected me at work, certainly at work, you know, I was a policeman for 30-odd years.

Kathryn:       Yeah, very proud of you.

Richard:       Yeah, thank you.  What I used to find was – if I was interviewing someone, not in the formal sense, it could just be interviewing a witness to an event or something like that or it could be something more formal and people would start talking to me but I’d quickly forget what they’ve just said.

Kathryn:       Yeah.

Richard:       And I thought that was me just being a numpty but it just didn’t get any better.  So, you know, in conversation – I could have a conversation with – in fact your last question, I can’t even remember what it was now.

Kathryn:       It’s okay Dad.  We were just talking about your symptoms and your tremors.

Richard:       Yeah.  Yeah I know that’s the general thing of what you’re saying but, you know, I had that throughout my life.  So I was never particularly good at interviewing strangely enough and despite that I managed 30 years of, you know, being involved in that type of situation, but I’d never felt comfortable with it.  I was, you know, I always felt a lack of confidence in that area.

Kathryn:       Yeah.

Richard:       You know, and that came through even things like promotion examinations and whatever.  That would surface – it would surface there.

Kathryn:       Absolutely.  I’m sure it – obviously it’s a condition that’s going to affect every aspect of life in many ways.  I know with obviously being in the Police Force, you did your 30 years and then you went back as a civilian as well for a bit as well and part of being in the Police Force, especially at that time, there was different – what is known as employee benefits so you did have critical illness cover for a while and I think when you were a police officer – but then I think that ended when you became a civilian.  I think just – I’m not sure how but I think it ended and it was – I think that ended just a little bit before you actually got your official diagnosis which was very frustrating of course.  But you did have private medical insurance and you were sort of – ‘cos originally the doctors could see a bit of a tremor and they said, “Oh it’s just maybe like a benign essential tremor,” and, you know, obviously having my Mum as your partner and as your wife, you know, a bit of a Rottweiler at your side, she kind of really was like, “No, something more is going on,” and you were able to access the private medical insurance.  How was it for you when you were going for that kind of – that assessment to find out?  Was it – were you kind of – did you expect to be diagnosed with Parkinson’s Disease?  Did you think Mum was just being a fuss over nothing?  What kind of – what were your thoughts?

Richard:       Strangely enough, I thought I had a nerve trapped in my shoulder – of all stupid things to link to your brain but that’s what I thought.

Kathryn:       That’s not stupid.

Richard:       So I went to see my GP and he said, “No, I think there’s something more neurological to this,” so I went – not expecting at all to get a diagnosis of Parkinson’s but as soon as I met the doctor at York, it was weird because he stood away from me and he walked behind me as I walked into the room and I’m always suspicious of people like that so –

Kathryn:       Well yeah, police officer for 30 years, you don’t –

Richard:       So I turned around to sort of watch him.

Kathryn:       Yeah.

Richard:       And anyway, he ushered us to sit down, which I did and, you know, he asked the question, “Why have you come to see me?”  I said, “Well I think I’ve got a trapped nerve in my shoulder,” and I put that down to the fact that over the years I’d had many a rough and tumble with people in the street and on one occasion one person had rolled me over the bonnet of a car –

Kathryn:       Yeah.

Richard:       And I landed in the middle of my back on the kerbstone.

Kathryn:       Yeah.

Richard:       And that really hurt and it seemed to – that was the only thing I could pin it to at that time and anyway, he just took one look at me and said, “You haven’t got a nerve trapped in your back,” he said, “you’ve got Parkinson’s Disease.”

Kathryn:       Yeah.

Richard:       And I was not expecting that at all.

Kathryn:       No.

Richard:       I mean, I knew nothing at all about it other than the fact people who had it had tremors.

Kathryn:       Yeah.

Richard:       But I found out since, it’s obviously more subtle than that and it’s more profound than just a tremor and he did a series of tests of my coordination and found that parts of my limbs weren’t functioning as they should do.

Kathryn:       Yeah.

Richard:       I was dragging my left arm –

Kathryn:       Yeah.

Richard:       Which I wasn’t conscious of and I did – he did a test of touching my finger – my thumb to my middle finger and tapping it continually, first in the left hand, then in the right hand and in the right hand it was great, it did it all the time.  There was no break, no interruption but then when I did it with my left hand, I started off but within about three or four seconds the signal wasn’t getting through to my fingers and I thought, “Oh that’s weird.”

Kathryn:       Yeah.

Richard:       You know, and I thought, “That’s rather peculiar,” and subsequently later found out it was probably the answer to the question as to why I was having difficulty changing gear in the car.  I’d go to change gear, I’d be telling my leg to move to change gear to put the clutch down and nothing would happen, my leg would stay still.  I suddenly began to realise that the Parkinson’s affected one side of my brain to a large extent and to the other side of the brain a lesser extent and I don’t know if you’re aware, but one – your left hand side of the brain controls your right hand functions?

Kathryn:       Yeah.

Richard:       And vice versa.  Now what was I going to say?  I’ve gone off on a tangent again haven’t I?

Kathryn:       It’s okay.  The thing is, this is really, really useful because a lot of people won’t know a lot of these things and I think what’s standing out as well is that, you know, we all kind of thought that there was maybe symptoms there, we didn’t know what it was.  Everything to us in a sense seemed – there seemed like something but, you know, we didn’t know and – but then, you know, the fact that as well you just – literally a specialist saw you walk in to a room and just said, “You’ve got Parkinson’s Disease.”  So even though to us the symptoms were quite subtle, obviously for a professional, it obviously really stood out that they could see that.

I know you did have MRIs done and I know that wasn’t your favourite thing in the world to go in the MRI machine so you did obviously incredibly well to do that and I think as well, that in itself is quite a task because, you know, you a tremoring and you have to stay still and, you know, that’s a lot of pressure as well on you to try and really – obviously I think sometimes for you and I’m not saying this is the case for everybody but I know sometimes your tremors, just say like we may be at a dining room table and we’d be eating dinner together and your knife and fork can be doing the absolute greatest kind of drum solo going when you’re trying to eat your food and we’ll maybe say to you and I’ll maybe go sort of like or Mum will say, you know, “Roo –” or I’ll say, “Dad, you know, you’re tremoring quite a bit.”  ‘Cos you won’t – for you, you’re tremoring but you’re actually not noticing the tremoring and you’re also not noticing the sound of the cutlery on the plate but then when we say to you and I don’t know how it works but when you sort of like have that kind of, “Oh, okay,” and you seem to be able to sometimes sort of – kind of reset and control it.  I mean, that could be that you may be able to control it even – I mean it’s maybe just only 10 seconds or something and then the tremor will maybe start a bit but it seems, you know, sometimes you just – I think it must be very, very tiring to in a sense be battling the tremors.

Richard:       It is.  I mean, I mentioned before 24/7 I’ve got them.

Kathryn:       Yeah.

Richard:       And what I need to do is when I’m like that is to reset myself, stand up, have a wander around, you know, just to have a shake down, get it out of my body as much as I can but it’s difficult because sometimes I get awful sensations that run through my skin.  In fact when I first was diagnosed, I used to feel as if there was 1,000 ants walking over and crawling over my arms and it drove me – as I say, it drove me nuts.  I wanted to scratch my arms all the time but it was just an itch but it was very, very powerful was this itch.

Kathryn:       Yeah.

Richard:       That could have been the Parkinson’s or it could have been the medication.  I don’t suppose we’d ever know that.  But sometimes the – what’s known as wearing off, if you – when your tablets – when you’ve had your tablets say for four hours and you’re due another one, there’s a period of time where your body will probably crave that tablet again and your body starts reacting by wearing off and you get all sorts of symptoms crop up and one of the most difficult ones to deal with is – to be honest I can almost cry every time it happens because it’s so, so profound it really does upset me.

Kathryn:       Okay.

Richard:       And that’s – if you can imagine you have a hole in your feet and all your body – energy is draining down through every single muscle from your face, through your arms, through your fingers, through your body, through your legs, through your toes and is draining down and out through your feet and it’s tingling as it does this and you just feel – I just feel as if I think my time has come.

Kathryn:       Yeah.

Richard:       And that can happen two or three times a week.  It’s a most awful sensation and it can take me a couple of hours to get over it.  It just wipes me out physically and mentally.  I usually end up having to go and have a lie down and a rest if the – this feeling goes on for about half an hour to an hour and it’s just awful but it’s part of the wearing off apparently of the medication.

Kathryn:       I suppose it’s – I know you take a lot of medication.  We’ll chat a little bit about that as well but I suppose you have to take them really regularly and I think a big thing is, is that, you know, for people who are listening, with the medication, you know, from the different things we’ve been talking about – you do see a Parkinson’s specialist and a Parkinson’s nurse.  It is so essential for people with Parkinson’s to have their medication at the exact right time each day, you know, it can’t – it’s not even really meant to be a minute off because this feeling of – in a sense they’re on a constant kind of – they have the medication so the body gets that boost of what they need and it’s kind of then on a constant comedown until that next set of medication.

Richard:       If I go – if I can –

Kathryn:       Yes of course.

Richard:       If I go back to when I was first diagnosed and I started to learn a little bit about these things, what I found was – and it happens with everyone – everyone has a substance called dopamine which is released in the brain and this dopamine it helps the motor functions of the body – the movement, you know, so if you’re slow in movement it’s come as a result of some dopamine lack – lack of dopamine.  Now I mentioned before about the left- and right-hand side of the brain –

Kathryn:       Yeah.

Richard:       In one side of my brain, my dopamine levels were down to 20%.  That meant 80% of the dopamine wasn’t getting – wasn’t being used.  On the other side, 20% – it was down to 20% so there was an imbalance there if you like and of course, because I was having difficulty on my left arm, that meant that the right-hand side was the one with the bigger amounts – largest amount, 80%.  And I thought, “How am I alive with 80% of my brain function gone?”

Kathryn:       Yeah.

Richard:       But it was only controlling the motor functions.

Kathryn:       Yeah.

Richard:       And it’s, you know, people should realise the thing is with Parkinson’s, it’s not just about tremors as well, there’s the other side of it as well.

Kathryn:       There are lots of aspects of it.  I know we were talking about bits of the cognitive side of things.  I know you mentioned a little bit about the interviews at work.  Now, I remember quite a few times when I was younger, you know, you’d maybe say about conversations or maybe interviews that you’d had at work and, you know, you were very well regarded, you were, you know, people would come to you to do double checks.  I know you said your concentration in interviews and doing things like that you weren’t happy with but you were in a sense almost kind of like what I’d – a bit of a compliancy-type person.  If I say it like that people especially within the insurance world will understand what I’m meaning.

So, you know, you were obviously a bit of like what was known as a case checker and you were doing lots and lots of things and really, you know, finding some incredibly – potentially even minute details other people may not have seen and, you know, really, really good at checking those reports.  And you, obviously you’d been doing it for 30 years, you know, an incredible amount of knowledge and then you would go for interviews and you wouldn’t get the jobs, well sort of the different types of roles and one of the things that you got fed back was that people were saying to you, you know, they were friends of yours, people you had known a long time, people who were just like saying, “Oh Richard’s got this, he’s absolutely go this,” but then in the interview, they’d say, “Well, we know that you know this and we know that you have all the experience, you absolutely had this but in the interview, you kind of went off on a tangent and you didn’t answer what we’d asked.”

I mean, I know that was very, very frustrating for you at the time because obviously to you, you had answered exactly what they’d wanted, you know, because in your mind you were answering what they’d asked for.  I mean, how is that?  How does that feel?  That kind of I suppose frustration and confusion that people are saying to you one thing and you are answering them absolutely perfectly but then the feedback is, “Well actually no, you’ve not answered what we’ve asked.”  That must be very, very hard to kind of settle in your mind.

Richard:       Yeah, the – that was – that one on that particular occasion, it was a – I’d made an application for promotion to the rank of inspector.

Kathryn:       Yeah.

Richard:       I was already a sergeant and had been for a number of years but this was to the rank of inspector and incidentally we talk about memory, when I’d actually taken the promotion examination for that, my mark – I came second highest mark in the country.

Kathryn:       Good for you.

Richard:       You know, in that particular year so I was very proud of that.

Kathryn:       Yeah.

Richard:       But when I went for the interview, you know, I knew the type of interview it would be – it would be a case of, “This is a situation, can you give us an example of when you might have dealt with this type of situation before?”  And that was to give the assessors time to assess my skillset if you like.  Giving a practical example to demonstrate that I knew what I was doing.

Kathryn:       Yeah.

Richard:       And my mind went blank, completely blank.  I couldn’t think of the answers and I thought, “This is stupid.  Why can’t I –?”  And the three people, the officers – senior officers who were on the panel, I knew them all personally, I’d worked with them, I’d served with them.  They’d obviously risen up the rank structure faster than I had and the situation being – I knew that they knew that I knew what I was talking about but because I wasn’t actually describing it to them, they couldn’t take that for an answer so they had to mark me accordingly and what I found was, every single question that they asked me, I thought, “Well that’s pretty easy,” and then I tried to get some words out to demonstrate my experience to illustrate that and there was nothing there, there was nothing coming forward and I thought, “This is ridiculous.”  You know, I mean, I’ve been a law instructor for a number of years, I knew my law, I knew procedures because ever since I joined I had the mantra, “Do it right first time.”

Kathryn:       Yeah.

Richard:       “Get things right first time.”  Whether that’s dealing with an incident or writing up the reports afterwards.  If you do it right the first time, you’re going to save yourself a lot of hassle.  And anyway, the interview concluded.  I stood up and I said to the panel, “I’m going to say this now in all seriousness; I don’t want you to mark my exam.”

Kathryn:       Right.

Richard:       “My interview.  I’m very embarrassed by this.  You know as well as I do what my experience is but I haven’t demonstrated it today so I don’t want you wasting time writing up a report which is clearly not going to lead anywhere.”

Kathryn:       Okay.

Richard:       I said, “I’ll take your feedback in due course,” you know, which was the norm and I walked out of the room and into a dining area where there was a television on display and it was showing the Twin Towers coming down live on television.

Kathryn:       Right.

Richard:       And I thought, “Well that says it all about life.”

Kathryn:       Yeah.

Richard:       You know, what is this promotion for?  What am I actually doing it for?  And I couldn’t answer that.

Kathryn:       Yeah.

Richard:       But seeing the Twin Towers coming down, it was 9/11 – the actual 9/11 day.  I couldn’t believe it and I couldn’t believe what was happening in New York and I went home – I came home stunned.

Kathryn:       Yeah.

Richard:       You know, I was just – it affected me quite deeply ‘cos I was thinking, you know, all them people – poor people who have been murdered in that situation and here am I worrying about getting a promotion.  Well I wasn’t going to worry anymore and I made a decision at that point, “That’s the last time I’m ever going to bother going for a job interview,” or, you know, and so be it that became the thing and of all things, I actually counted – I created a countdown calendar.  There’s 321 days on it to my retirement.  I sat there – I sat there at work and I calculated how many days it would be until I could officially retire and it was just on three years.

Kathryn:       Yeah.

Richard:       321 days and I counted a 321-day calendar which I had on my office desk – on my office wall and I’d tick them off religiously every day.

Kathryn:       Good for you.

Richard:       Until my time came.  Strangely enough, I then worked an extra nine months, I don’t know why.

Kathryn:       I was going to say, you did ‘cos you went back as a civvy as well!

Richard:       Yeah, well yeah – the job I was doing at the time was – you mentioned – I think you mentioned it earlier, checking case files, checking the paperwork if you like before it went on to, you know, I had the authority to discontinue cases that had already started.  I had to review them for evidence.  I had to review them for – to make sure they met the standards that were set legally and whether or not there was a public interest to continue the matter or discontinue the matter, depending which.  Following national guidelines and working closely with the CPS, I became very good at it.  I would say almost expert at it.

Kathryn:       Yes.

Richard:       So when I actually retired, I had that skillset that I was then able to take forward when they decided to civilianise that role I was doing.  It was known as a decision – I can’t say it, decision maker in the Criminal Justice Unit and that became my job when I became a civilian.

Kathryn:       Yeah.

Richard:       And then ultimately, regrettably, I was facing redundancy but after this length of period of time, my health generally was on a decline.

Kathryn:       Yeah.

Richard:       Because of the Parkinson’s, things started to sort of creep in and cause me personal difficulties if you like and, you know, well – I’m quite happy to talk about them but –

Kathryn:       It’s up to you Dad, it’s completely – obviously it depends upon what you feel comfortable doing but I think we can obviously say as well at this point that you did obviously retire and obviously you did that mainly as well for your health because it did start to really struggle at that point and I think as well, you know, as well as having the Parkinson’s and obviously we won’t go into too much detail or anything because obviously there’s always like the Secrecy Act and all that kind of thing – is that, you know, I think people, you know, they don’t understand sometimes, say like somebody in a position like yourself exactly what you had to face every day.  So obviously with the checking the reports, checking the evidence, you know, there are – for many, many years, well over 10 years or so I would imagine at least, your job was to see things and to read things that nobody should ever have to see or read.  And, you know, I think again, everybody who is listening would be absolutely grateful that you were in that position and it feels like such a – it feels like such a sad kind of end in a sense to your career that obviously you did that and, you know, you were doing something which was incredibly hard to do and incredibly hard sort of like emotionally and mentally to face that every day.  And then to find that you have Parkinson’s Disease and in a sense when you’ve come to your time to retire, when you’re expecting sort of like, you know, “I’ve done all this, I’ve really helped society,” to then retire and actually face a lot of difficulties.

So something I think that people may not be aware of as well is how much medication can affect somebody who has Parkinson’s Disease.  So I know Dad, you take a lot of medication and it has been changed and tweaked a significant amount through the years.  So when people take the medications, it can take about three months for them to actually reach a stage where they’re working properly.  So it could be that, you know, I know you’ve had it before where you’ve took a medication for three months and then they’ve said, “Right we’re going to change you, obviously this is happening, you may be getting this side effect,” or sometimes there has been in a sense some personality changes and then they’ve said, “Right we’re going to tweak it and put you on to this one,” so then in a sense you’re having to withdraw off one set of combinations to then get up to the full effect of another one.

And I know there’s been a few things in there, I know we’ve chatted a little bit about me being able to share this so thank you, so there was a time where I know that you were put on some medications and I know that you felt absolutely amazing and you felt so, so good but you actually became very, very angry and were very much not yourself and obviously you had to change off that medication and I think the difficulty then is that it was quite at that time for you and obviously correct me if I say anything that you don’t agree with or you think I’m wrong with, but I know that was really hard for you because to you, you felt amazing.  You know, you couldn’t see this anger that you had and people were saying to you, “Well you’re going to have to change your medication,” so you’d just got to this point where you felt amazing and then you were having to change your medication and a medication change meant that you were on new medications which meant that you weren’t angry but, you know, you weren’t feeling anywhere near as good.

So I think there was almost in some ways, not in a bad way but it was almost kind of a bit of resentment that, you know, there’s a change because you felt amazing.  There was nothing wrong, you know, you weren’t angry, even though we could see it, you weren’t that and I know that there’s been a few other things as well so say like you had a medication for a while which made you really, really obsessed about clothes shopping and just for everyone who’s listening, my Mum has said very specifically that she wants me to mention that he bought 86 shirts.  He wasn’t working at this point but 86 shirts and I think the majority of them weren’t worn and were donated to charity in the end and I know, I think there was quite a few leather jackets as well maybe? And, you know, from the outside, we could see that your behaviour wasn’t – I mean you’ve not had – I know sometimes the behaviours can become quite – I know they maybe seem extreme but sometimes they can become quite an unhealthy extreme and for you, you know, you were in a position where yes, obviously you were spending that kind of money on the shirts and everything wasn’t brilliant but, you know, you were able to be okay, you know, financially and it was over quite a long time period as well.

And I think it’s, again it’s one of those things that people don’t – again, when you hear Parkinson’s you think tremor, you don’t think necessarily being obsessive over certain things or what the medications can do.  I know at the moment you are massively obsessed with jigsaws which I think is a really positive thing.  It’s – obviously it’s your coordination, it’s your concentration.  I know you’ve have a little bit of issues though with your legs recently because in a sense you are sitting way too long, potentially hours at a time doing jigsaw puzzles and again, time – like with the staring, time’s kind of lost to you.  I mean, what’s it – in a sense, it could sound a bit strange, but in a sense what is time like for you?

Richard:       Well I’ve got to manage my time all the time, excusing the pun.

Kathryn:       It’s alright.

Richard:       But I mean I was at one point taking 19 tablets a day.  I’m now taking 15 and there was a mixture of reasons why I was taking that amount because I had my Parkinson’s medication – I won’t use brand names –

Kathryn:       No, no of course.

Richard:       So we don’t get sued.  Yeah, where was I?

Kathryn:       You were talking about – you’d just gone down to 15 medications.

Richard:       Yeah 15 medications, so some were directly related to my Parkinson’s and what they were supposed to do is they were called dopamine agonists.  What they were supposed to do was mimic the effects of dopamine so to bring my dopamine levels back up to where they should be, if you know what I mean?

Kathryn:       Yeah.

Richard:       So I started this – they started me off on a low dose and gradually worked my way up to try and get myself levelled off and it can take three, four, five, six weeks for them to actually take effect and on one of the – the other drugs that I was taking at that time and still do, things that help keep the gut in check because the Parkinson’s drugs are very powerful indeed, they really are and so the other drugs are there to counter the effects of the powerful drugs.  So they, you know, they help keep my stomach under control or at least I thought that was what they were doing.  But what I subsequently found was that one of the – you mentioned the 86 shirts –

Kathryn:       Yeah.

Richard:       I didn’t go out and buy 86 shirts all at once.

Kathryn:       Now that would have been a shopping spree I’d have been proud of.

Richard:       But I did buy the 86 shirts –

Kathryn:       Yeah.

Richard:       Because I needed them.

Kathryn:       I know you needed them, I know.

Richard:       The fact that some of them didn’t fit wasn’t relevant.

Kathryn:       Yeah, doesn’t matter they were the wrong size.  Yeah, it doesn’t matter.

Richard:       They were a bargain.

Kathryn:       You were enjoying yourself.  I know.

Richard:       They were a bargain.

Kathryn:       That’s part of the northern man in you as well isn’t it though?  There was a bargain shirt there, you’re not going to miss that.

Richard:       Yeah, and that was the – if you like part of the fixation that you could get out of taking Parkinson’s medications and of course the other side effect is they can lead to people having a propensity to gamble.  Now I don’t gamble.

Kathryn:       Yeah, we’re lucky we didn’t get that.

Richard:       Yeah, we didn’t get that – it can have effects on sexual behaviour.

Kathryn:       Yeah.  I don’t want to know [both laugh].

Richard:       Well we’ll stop there then – and what else?  I forget off the top of my head now.

Kathryn:       Yeah, but lots of things.

Richard:       Yeah and of course we mentioned this to the consultant who said, “You’re going to have to come off those immediately.”  No, there was another side which I forgot to mention – probably the most important one of all was I was – I became quite an angry person and I was awful to your Mum.

Kathryn:       Yeah, well I think – yeah but the thing is it wasn’t you, you know, I think it was absolutely the medication Dad.

Richard:       But your Mum says – Pauline says that there’s the normal me, the normal Richard and there’s the Parky Richard.

Kathryn:       Yeah.

Richard:       And in that phase of my life I was in the Parky Richard phase and when the consultant took me off these – this particular drug, what I didn’t realise was going to happen was – I said, “What are you going to replace it with?”  And he said, “Well – I can’t yet because I’ve got to wait until the effects of the current drug you’re taking are out of your system and that will take three months.”

Kathryn:       Yeah.

Richard:       Because, you know, they – once you start taking tablets, they go to the molecular level in your brain, as deep-seated as that and it has to clear – it has to flush its way out of your brain and because the next drug that I would be put on wouldn’t work – they would counter – they would knock each other out.

Kathryn:       Yeah.

Richard:       They would cancel each other out so they’d be of no benefit and of course physically and mentally I would be upside down but it turned out – it turned out when I went into – when I came off this drug, I went through three months of absolute hell.

Kathryn:       Yeah.

Richard:       I – it was the darkest place I’ve ever been to in my life, you know, and I do get upset occasionally from talking about it but I will do.  All I wanted to do was sleep and I didn’t care whether or not I was going to wake up or not.

Kathryn:       I know.

Richard:       It was as bad as that.  I was just hoping that at some point I would die then I’d be free of all the difficulties that I’d been having.

Kathryn:       I know.

Richard:       And anyway –

Kathryn:       I wish I could hug you.

Richard:       Yeah.  They told me what I was going through and experiencing was the equivalent of coming off cocaine.  Now I’ve never taken cocaine or any other drugs for that matter other than prescribed drugs so I wasn’t aware of what that would be like but if it was like I experienced then I’m a good – sure advocate not to take illegal drugs because of the effect.  I mean, I saw it for 30-odd years when I was in the job.

Kathryn:       Yeah of course.

Richard:       The effect of illegal drugs but here we are with a prescribed drug and subsequently what happened was – it was apparently known that this drug had this side effect –

Kathryn:       Of making people angry, yeah.

Richard:       Yeah and it was one of the things that people had a propensity to sort of pick up and eventually they withdrew it so it’s no longer available but as you said right at the beginning, it was brilliant.

Kathryn:       I know, I was going to say, I know you felt amazing.  I don’t think you’ve ever felt like that again.

Richard:       I felt absolutely alive but I was on a different planet.

Kathryn:       Yeah.

Richard:       You know, I was in my own little world.

Kathryn:       Thank you for being so open and honest there.  Obviously, it’s really hard as your daughter to hear that but I do – obviously I do appreciate, you know, I appreciate obviously the way that you felt at the time and obviously I saw how you were at the time as well and I think that’s a really, really open account of it so thank you so much for sharing that, Dad.

In regards to things like the Parkinson’s symptoms, as we said, you know, before, people will automatically, I think, think of the tremors, that would be the most obvious clue for people.  We’ve mentioned about the staring.  There can be kind of a bit of a – in a sense a blankness, a bit of an emotionlessness – that’s not a word but you know what I mean – to the face sometimes.  Something for you as well – some side effects that you’ve had is you have lost your sense of taste and smell.  So there’s some extra things about that that maybe people don’t think of.  You know, we immediately had to make sure there was no, you know, there was a gas fire in the house and we had to immediately make sure that that wasn’t connected anymore because you would never have known if the gas was on.  We had to be so, so careful with that.

There’s other things as well so just going back a little bit towards the medications as well and like the concentration side of things. There was a good time as well when obviously my boys, when they were a lot younger and even now still, you know, like as you say, the Parkinson’s medication is very, very strong and, you know, there were times sometimes where I’d maybe come to your home or something or you’d maybe be at my house and I would find the medication possibly on the floor and you would absolutely swear down that you had had all your tablets and that you hadn’t dropped any, that you’d absolutely counted them out and things like that and you would have no – you would, you know, genuinely yourself you would have no – there was no sort of like, “Oh I’ve been caught out, I’ve been naughty not having a tablet,” it was absolutely – you were sure that you’d had that tablet and it was actually within the space of the children which could have been very, very serious so there was a good time where, you know, in a sense, I couldn’t leave the children alone with you and especially when they were very, very little.  Obviously as the children are getting older it is obviously much, much easier but, you know, we had to take a lot of extra steps that people probably wouldn’t think about.

I know another thing that you’ve experienced as well is what’s known in a sense as the Parkinson’s Pause and I believe that happened – you were in an airport with my Mum.  I think it’s happened a few times but that was the main one I could think of.  I’m just saying this for people so they can maybe understand a few extra things as well but I know with that one in a sense, you kind of forgot to walk in a sense.  You were just stood and you just couldn’t walk so what Mum had had to do was kind of –

Richard:       Can I?

Kathryn:       Sorry, go on.  Yeah, yeah, go on.

Richard:       Yeah, there’s too much coming for me in that lot.  If I can just break down a bit.

Kathryn:       Yeah sorry, I was – yeah, sorry.

Richard:       Regarding the tablets –

Kathryn:       Yes.

Richard:       My head was telling me, “I’ve taken my tablets.”

Kathryn:       Yeah.

Richard:       “So they shouldn’t be on the floor.  But how have they got there?”  And I couldn’t work that out.

Kathryn:       Of course.

Richard:       Because as I say, I was certain that I’d taken my tablets on time and of course that is one of the – if you don’t take your tablets, you don’t get the benefits of it and you mentioned earlier about it – you’ve got to take them within a pause of a few seconds.  You’ve got to think that your brain, whatever medication you’re taking is given for a reason.

Kathryn:       Yeah.

Richard:       And your brain becomes accustomed to having that amount of drug at certain periods of the day and once that drug has worn off, your body starts to crave it and – what was I going to say?  So taking my tablets on time became something that was – it was – I was frustrated, I was really cheesed off with everything to do with the illness and taking my medication.  I resented it but I knew I had to do it so we came up with the idea of having a little dosette box where I could divide my tablets up, all my tablets for the day, prepared in advance the night before and I still do that today.  And, what was I thinking of?

Kathryn:       It’s okay Dad.

Richard:       Yeah, your Mum keeps on top of me with that.  She – oh that was it, I have an alarm set on my mobile phone to indicate the time when the next tablets are due.  Whatever the tablet is, an alarm will ring beforehand but I still forget to take them.  So your Mum is usually there, biting at my heels [both laugh].

Kathryn:       And then when you’re at my house it’s me going, “Dad, your mobile phone’s going off!”

Richard:       Yeah.  Because I get distracted very easily.

Kathryn:       I know.

Richard:       That’s what happened – was it something else you just mentioned about the gas?

Kathryn:       I mentioned the Parkinson’s – oh yeah, the gas.  I was wondering where you were going there with that!  Yes, I mentioned the gas, yeah.

Richard:       Yeah we were in Suzie’s flat and –

Kathryn:       Suzie is his other daughter by the way, to the listeners.

Richard:       Yeah.  We were in her flat and someone said they wanted a cup of tea or something I can’t remember now off the top of my head but I went into the kitchen and I didn’t turn it on but someone put the gas burner on to boil some water.  Suzie didn’t have a kettle at that time.

Kathryn:       Yeah.

Richard:       And after a few minutes, I think it was Pauline came into the room and said, “Oh my god, the room’s full of gas!  What are you doing?”  And I said, “I don’t know,” but I hadn’t realised that the flame had blown out because it was near an open door.  The flame had blown out and the room had continued to fill with gas.  So anyone who had walked into that kitchen with a lighted match –

Kathryn:       Yeah.

Richard:       Would have gone boom in a big way.  Hence I know we have central heating – gas central heating now but that’s it.

Kathryn:       That’s very different, yeah, it’s very different with the pilot lights and everything, the safety mechanisms that are in place.  But yeah, I think, you know, a really, really good example there Dad and I think as well, the other thing with the loss of taste and smell as well that I think is important as well, especially now, is that obviously that is seen as one of the biggest clues that somebody has corona virus and obviously you can’t have that.  Another thing for people to understand as well is that if food started to go off slightly, then you’re not going to be able to tell –

Richard:       I can’t smell it, yeah.

Kathryn:       Yeah, and obviously as well – and you can’t taste it as well so my Mum also – she has some things where she can’t eat certain types of food which obviously you love, Dad.  And yeah, it’s very, very hard obviously to make sure that everything is okay and safe.  The other thing I was just starting to mention was the Parkinson’s Pause that you experienced.

Richard:       Oh yeah.

Kathryn:       Where in a sense you stopped walking.  Do you want to explain that?

Richard:       Yeah we were in Pisa Airport waiting to come – we’d been on holiday to Italy and we were in Pisa Airport coming back and there was no problem with me travelling, the insurance was covering me and there was no difficulty legally for me travelling there and it came to the point in time where Pauline and I had separated a little bit, we were stood about a length – the room was a length apart, something like that and the call came to go to board the plane.  And you know what it’s like, it’s just a mad rush –

Kathryn:       Yeah.

Richard:       When you get that call and the call came and I went to move forward and I couldn’t move.  I froze on the spot.  My legs just wouldn’t move and I thought, “This is ridiculous, what’s happened?”  And I thought it can’t be the crowd around me because, you know, I’d just shove them out of the way.

Kathryn:       Yeah.

Richard:       But my legs had sort of jammed solid and your Mum shouted at me –

Kathryn:       I can just imagine the tone and inflection and everything.

Richard:       Yeah.  She shouted at me to move forward, to put one step in front of the other and I couldn’t do it because the commotion of all these people around me –

Kathryn:       It was too much.

Richard:       It was just too much, I can’t stand the commotion and anyway, this – I think it was an Italian lady, bellowed out something in Italian and it was like the parting of the Red Sea, you know, the crowd just sort of opened up and allowed me to go through but with – Pauline had sort of come to lead me through and that was strange but a very unsettling period because I’m thinking, “If I’m out on my own and something like that happens, I’m going to become a statue.”

Kathryn:       I know Mum was chatting to me about it afterwards and she sort of had read a tip – obviously she’s done lots of research about Parkinson’s since your diagnosis and I know that she said that one of the things that she did then with you is that she kind of – if people can imagine – if you’re – if you were standing with your feet facing one way Dad, then Mum had put her foot in front of your feet kind of going across where your feet where and she said to you to step over her foot and said, you know – and the focus is, you know, not just – don’t just keep saying, “Walk, you know, come on, walk, move your legs,” it was, step over Mum’s foot and that kind of helps to trigger you to sort of feel that kind of what – I don’t know, processes that you need to be able to move forward.

But I know the biggest one – I think it’s probably one of the biggest kind of potential side effects – we don’t know absolutely for certain it’s a side effect but it is sort of like leaning as if it is absolutely so – is that last year you continued to experience a twisted bowel that was obviously very much complicated by the Parkinson’s Disease because again, people listening may think twisted bowel, that doesn’t sound very nice and obviously it was not nice for you at all.  So you were in lots of pain, lots of discomfort and lots of trips to the hospital to have procedures done to alleviate that but a big thing as well was the fact that the Parkinson’s medication is absorbed through the bowel so as this is happening and you’re potentially there, you know, with this twist where nothing is getting through for quite a few days at a time, that’s a huge impact upon your medication as well and your ability to cope with the Parkinson’s disease as well as a twisted bowel and I think it’s fair to say that, you know, last year you were obviously rushed for sort of – in a sense emergency surgery to a hospital about an hour’s drive from us due to it happening far too regularly and it got a little bit intense I think and I think we both were of the opinion at that point that – I think we gave each other a cuddle at that point and sort of just kind of nodded and looked at each other and were prepared for things to not go as we hoped.  And again, I mean, what’s it like when, you know, obviously you’ve got Parkinson’s to deal with, what’s it like when yet another thing suddenly starts to come up?

Richard:       Well to be honest I’d never been a fit person in all my life, you know, I’m certainly no Usain Bolt.  I had a number of ailments.  I mean, I was double incontinent at one point and I had a turps operation on my prostate to alleviate that side of it and that worked pretty well.  But it continued with constipation incontinence to do with the bowel and one of the things that I learned from that was that when you eat your food, it goes into your gut and then has to transit through your intestines and into your colon and into your bowel and out and with it being a movement disorder, things slow down.

Kathryn:       Yeah.

Richard:       So the medication you just mentioned is absorbed in the bowel but it was taking time to get into the bowel.

Kathryn:       Yeah, and getting trapped as well and not being able –

Richard:       And getting trapped.

Kathryn:       To go through.

Richard:       Yeah, and what consequently happened because the bowel itself is a substantial muscle.  I’ve never thought of it in many respects, but it’s a massive muscle, cylindrical in shape and it moves when it wants to move, not when you want it to.  And what consequently happened was – because the food wasn’t passing through properly, despite me taking Senekot and other medications –

Kathryn:       So that’s medications to help – just for people who don’t know, Dad – so I’m just going to say that, so that’s medications to help people in a sense have regular bowel movements so it’s something that goes through your system.  Okay, carry on.

Richard:       Yeah.  What was happening was that there was nothing coming out or if it was coming out it was coming out as a liquid as opposed to solid.  But what subsequently happened was, my stomach became so rounded, I looked like a barrel or a balloon and I was ready to pop at any point and Pauline insisted that I go to the Casualty which I did and the doctors that were there were quite surprised at how distended my stomach was.

Kathryn:       Yeah.

Richard:       You know, from having a 36, 38 inch waist I was probably in the region of a 49, 50.

Kathryn:       Well I was going to say Dad, you looked like you were pregnant with twins or triplets, it was – your stomach was massive and what was strange as well is that it had swollen so much that we could see some of the veins – some of the veins on the top of your stomach and we could see the blood in a sense pulsing through this because your stomach had been stretched so tight it was incredible to see.

Richard:       Yeah, well they said, if it had popped, the likelihood is I wouldn’t be here –

Kathryn:       Yeah.

Richard:       Because the infection would set in – no doubt set in and it would be an awful, difficult thing to sort of contend with.  But I was frightened of going in for an operation.

Kathryn:       Of course.

Richard:       So I said, “Well is there anything we can do in the meantime?”  They said, “Well, we’ll deflate it.”  So they did that – I won’t tell you how but they did that –

Kathryn:       Yeah, we won’t go into those bits.  I know, you know, let’s just – the listeners don’t need to know.

Richard:       And they kept me in overnight so to speak and the following morning I’d blown back up again so it wasn’t necessarily going to go away very easily but I wasn’t convinced an operation was necessary at this time.  I was thinking more or less, “Let’s just bide our time and see what happens.”

Kathryn:       This kept happening over six months didn’t it?  It just kept happening again and again.  You were maybe in A&E twice a week, it could then – maybe it was once every three weeks and it was just non-stop but I then as I say in December it really came to a point where they said, “Right, that’s it,” and they removed part of your bowel didn’t they?

Richard:       Yeah.

Kathryn:       Fit a stoma bag.

Richard:       Yeah, in fact I had eight emergency admissions throughout that particular period of a year until the last time I went in – the last time I went in, the doctors I think had said, “Enough is enough.”

Kathryn:       Yeah.

Richard:       “We’re going to have to do something about it.”  The problem being of course, with being Parkinson’s, your medications have got to be taken on time and having an operation doesn’t prevent you from having your medication.

Kathryn:       No.

Richard:       But my medication was in tablet form and of course they can’t feed tablets through a drip so my surgery had to be planned so that I would be awake to be able to take my medication before the surgery started ‘cos it was expected to last five or six hours.  I had to have my tablets before I started and they had to get to work quickly so they could get their operation dealt with and then back on the ward again in time to take my next dose of medication.  So it wasn’t a case – an emergency admission wouldn’t allow that because one of the things they needed was to make sure that there was sufficient staff on duty – sufficient specialists on duty to be able to call on if something happened during surgery and the only way they could do that was by having it done in York.  So on this last occasion when I was taken into Scarborough, they said, “You’re not going home, you’re going to York,” and I had the operation done and to be honest it was quite an easy operation and the recovery was quite easy as well but there’s been complications since.

Kathryn:       Yeah, you’ve got a – obviously you’ve got a stoma bag now and I know that’s having a while to adjust to it because again, you know, with the taking care of a stoma bag, the fact that you have to obviously spray a liquid onto the area to sort of like – I think that’s to get the stoma bag itself on and off isn’t it?  But then you have to clean it – obviously while you’re doing that while having tremors, that’s not necessarily the easiest thing.  I know you’ve obviously developed a hernia in the area as well so you now have a hernia belt.

But I think a big thing as well sort of like that’s coming up that is worthwhile chatting about – in five days’ time you are due to travel to Newcastle which is about two and a half hours away from us, for deep brain stimulation surgery.  So you have been in isolation for the last two weeks as of – just in case especially with corona virus.  Obviously there is a concern and the problem that we have as well – very much so is that none of us are allowed to – sorry, for anybody listening my six-year old is just doing us an accompaniment harmony in the background there – is that obviously we can’t go with you, especially with all the lockdowns and everything.  And I think we’ve had about three weeks’ notice from them calling to say, “You’re going to have the surgery in three weeks’ time,” so it’s all a bit intense.  I know that you and Mum are absolutely calm as anything.  I am panicking like mad, it is the only thing I am able to think about at the moment and what’s going to happen is – with the deep brain stimulation surgery for anybody who’s not sure – what happens is basically my Dad will be taken into surgery, there will be two holes placed into I believe his skull and his brain at which point wires are then going to be inserted through his brain and will go down through his neck area into kind of a small gadget within his chest.  You’ve obviously been told a long, long list of things that could go potentially wrong Dad and I know that obviously as well I believe this operation you’re going to need to be awake and that’s not something that I think anyone in this situation would find the most thrilling of things to be doing.  How are you feeling about it all?

Richard:       I’m quite upbeat really, I’m looking forward to it.

Kathryn:       I love the fact that you’re – no I love the fact that you and Mum are so calm and just – and I haven’t even spoken to Suzie my sister yet but I know me and Suzie are just going to be absolutely – for the day before, the day of and the day after, we’re going to be absolutely beside ourselves and you and Mum are just like, yeah, it’s just like you’re going for eye check-up or something.  You’re both just like, “Yeah, well –”

Richard:       Well I think I hold the world record for the amount of – most operations ever done in Scarborough Hospital on one person [both laugh].

Kathryn:       I was going to say, ‘cos as well as all this, I know you have had a hiatus hernia.  I know that there obviously is a few different operations that you’ve had – kidney stones, you’ve had – I know as well just for interesting sake for everybody that your heart is in slightly the wrong position as well, it’s more central to your chest rather than where it should be.  So you’re just absolutely kind of a – I think you’re a surgeon’s dream Dad.  I think it’s a case of, “What’s going to happen?”

Richard:       My heart’s also trigemini.

Kathryn:       Yeah, it’s – yeah I think you’ve got a bit of everything haven’t you?  You’ve got a bit of everything going.  But I think, you know, so you’re feeling obviously quite in a sense upbeat about it.  Usually with these operations, the partner – so Mum would usually stay in a hotel nearby.  She’d be given accommodation – again with the lockdown and everything that’s going to be probably not available so you are going to be – and obviously don’t want to suddenly switch the way your mindset is but, you know, obviously you are going to be on your own, you are travelling that distance and unfortunately we can’t be there with you and it feels very strange that I’m not going to be able to give you a hug beforehand before you go.

Obviously I have brought the boys to see you this morning so we’ve all been in the garden so you can see them playing and have sort of in a sense a bit of time with them even though we did obviously keep you inside so you could just see them through the windows.

I suppose the next thing is just to explain to everybody as well the next stages of the brain surgery is that it doesn’t just happen and that’s it.  So the – sort of like the averages that I think that they say, it’s about 18 months for the full recovery to happen after the brain surgery.  So after you’ve had it, you’ll be in hospital for obviously a little bit.  I think possibly a short amount of time because with everything going on, corona virus, they just want you home as quickly as possible.  But they’ll in a sense leave you alone for a few weeks or so, just let everything settle down, let your body adjust to the fact that it’s obviously had a very, very major surgery and then every – from then, sort of like every two weeks or so you will need to travel to Newcastle for them to tweak the settings of this kind of gadget that’s going to be within you to see if it helps or doesn’t help your symptoms with the Parkinson’s.

Now, something to bear in mind when people are having this thing is that, you know, you could go for this treatment and they could do the tweak and you could feel amazing and so for the next two weeks you’re going to feel fantastic, you could then go back at the end of that two weeks, they could do another tweak and you could feel dreadful, absolutely horrendous and you will not be able to have the setting changed until two weeks’ time.  And it’s going to, as I say, carry on – I mean there’s obviously – I’m saying all this, there’s probably people thinking is it worth it?  But there are a lot of people obviously who have had this surgery and I know you’ve seen some of them to speak Dad and you’ve seen that benefit that they’ve had and it’s something that you really want to do isn’t it?

Richard:       Yeah.  Yeah, it’s – well it’s been a long time coming.  I should have had this operation back in May but because of Covid it’s been put back.  But I’m not asleep all of the time – awake all of the time during the operation.

Kathryn:       Okay.

Richard:       There’s going to be a period of time when I will be asleep and they’ll wake me up to test it, you know, to switch it on and see what the reaction is in the brain and then they turn it off because like with any surgery, as you say, there’s the after-effect of surgery and there’s likely to be a swelling on the brain which they’ll have to sort of deal with – it will have to be dealt with and just to allow the things to settle down.  The thing that goes into your chest is like a pacemaker.  If you can imagine a heart pace­maker, it’s a similar sort of principle to that.  It’s called a neurotransmitter so the neurotransmitter stimulates the neurons in the base of the brain where the dopamine is normally sort of situated and it can be tweaked up and down.  It’s a rechargeable one so I’ll just be able to plug a device onto my chest and it will recharge it.

Kathryn:       Full-on Bionic Man, you’re getting there, aren’t you?  Your replacement hips as well.

Richard:       Oh I forgot about my hip, yeah.

Kathryn:       I just remembered as well actually, you’ve got that many things Dad.

Richard:       What they give you as well is a control device which means you can turn yourself on and off so I’m just waiting for the –

Kathryn:       Do not – I was going to say, do not let the grandkids get hold of that.

Richard:       Yeah, “Where’s Grandad?”  “Oh, he’s asleep, Mam.”

Kathryn:       I was going to say, I can imagine my eldest who’s nine being extremely sensible.  I can imagine the three-year old is just going to run off with it and maybe like my nieces, maybe hide the remote behind the radiator for a little while for you as well.

Richard:       Yeah.

Kathryn:       But obviously I’m sure everybody listening just, you know, is giving you the most biggest amounts of positivity and just don’t worry, I’m going to keep Mum distracted while you’re away.  Obviously I’ll throw some grandchildren at her so she can be well and truly distracted and yeah, just yeah, absolutely got my fingers crossed that everything is going to go well for you Dad and it’s going to give you kind of the results that you’re hoping for.  And hopefully what we’ll do is every now and then we will have you back on the podcast so we can talk about what everything’s like post-surgery so how you’re feeling and different things like that, if you’re happy to do that.

Richard:       Yeah I will do.

Kathryn:       Okay, sorry, go on.

Richard:       Just one thing.

Kathryn:       Yeah.

Richard:       I mean, I’ve opened up a fair bit today –

Kathryn:       Yeah.

Richard:       Not everything but I’ve opened up a fair bit –

Kathryn:       You’ve done loads, Dad.

Richard:       It might seem as if I’m an upbeat sort of person.  I try to be.  I can be – I can be as miserable as sin.  But the bottom line – the bottom line with this is I’ve forgotten what it feels like to be well.

Kathryn:       Yeah.

Richard:       And I’ll say nothing more.

Kathryn:       Okay.  Well I think that’s probably a perfect way to sort of end that then Dad.

Richard:       Yeah.

Kathryn:       So, as you know, because I know you listen to all my podcasts ‘cos you’re my Dad and you do that, we have a truth or lie feature.  Now I don’t have one for the last episode so you’re kind of kickstarting the next one and obviously there was a very, very clear topic that was going to be for your truth or lie.  So what I would like to do this time is for us – for people to decide if we’re telling the truth or lying about what our favourite James Bond films are.  So what is your favourite James Bond film, Dad?

Richard:       I suppose it’s got to be Goldfinger.

Kathryn:       Yeah?

Richard:       It was the first one I ever saw and it just took me into a dream world, you know, I wanted to be James Bond.

Kathryn:       Absolutely.  Absolutely.  And I’m going to say that mine is – I’m going to say Quantum of Solace.

Richard:       Oh that’s a good one.

Kathryn:       So, thank you everybody for listening and thank you so much Dad for joining me.

Richard:       Yeah.

Kathryn:       I’m going to be back next week chatting with Simoney Kyriacou from FT Adviser about dodgy lead generation firms and the steps that the industry is taking to tackle them and also reflecting on their recent diversity and inclusion awards.  If you’d like a reminder of the next episode please drop me a message on social media or visit our website www.practical-protection.co.uk and please also don’t forget that if you listen to this, especially if you’re in the insurance side of things, you can claim a CPD certificate for this too.  Either send me a message or go to the website.  Thank you Dad.

Richard:       Bye everyone.

Kathryn:       Bye Dad.

Richard:       Bye darling.

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Richard Lemmon - Living with Parkinson's Disease

Hi everyone, this week I am chatting to my Dad!

My Dad was diagnosed with Parkinson's disease in his early 50s and he is now 66. He is going to be chatting about how his condition started to affect his ability to work in the police force and what having his symptoms feels like.

He is speaking frankly about how Parkinson's disease has at times changed his behaviour and personality, the symptoms you can have that many people don't think of and how he feels about his upcoming deep brain stimulation surgery.

The 3 key takeaways:

  1. Some of the symptoms that a person with Parkinson's disease can experience.
  2. The affect that Parkinson's disease can have on changing a person's behaviour.
  3. A quick overview of how deep brain surgery is sometimes used to treat Parkinson's disease.

Next week I will be chatting with Simoney Kyriakou about rogue lead distribution firms, what the industry is doing to tackle them and her experiences with private medical insurance.

Kathryn:       Hi everyone, today I have my Dad with me.  Hi Dad!

Richard:       Hi darling.

Kathryn:       Some of you may know, my Dad has Parkinson’s Disease and we are going to do is we’re recording this episode five days before my Dad is due to have deep brain stimulation surgery for the Parkinson’s Disease.  He’s going to be telling you all about his story, the different symptoms that you can possibly have with Parkinson’s Disease, some of the complications, how it feels to be diagnosed with the condition and a few other things as well.  So, this is the Practical Protection podcast.

So for everybody listening to this podcast, it’s going to be a little bit different to usual.  So for somebody with Parkinson’s Disease of my Dad’s level, communication can sometimes be a little bit tricky.  It could be that my Dad may go off on some – potentially some long tangents.  He’s actually said to me just before we started, “If I go off on a tangent, just bring me back,” kind of thing.  There’s times he may need to pause and think about his answers sometimes and he may need to pause sometimes to have a glass of water.  I’m going to be editing the podcast just as usual but what I’m hoping to do is not do any kind of really heavy editing.  I want to leave in the pauses that my Dad makes, potentially if he repeats a conversation or if he does go off on any of his tangents, because it’s going to give you a really good insight as to what it can be like sometimes when you speak to somebody that has Parkinson’s Disease.  There may be some times as well that I will just maybe give my Dad a little nudge, refocus him and possibly even sometimes correct or try to help him recollect some of his sort of like memories of things that have happened in the past because with the different changes in the medication that you can get with Parkinson’s, it can sometimes affect the way that you see things and remember things and it may just be that I need to just help him, as I say, just focus on certain bits.  But first things today, how are you feeling Dad?

Richard:       I’m tremoring like mad at the moment.

Kathryn:       It’s quite interesting seeing you on the Zoom video I have to say.  No one else is going to get this wonderful view that I’m seeing of you.

Richard:       Yeah, ah well, there we go.  No, generally I’m okay it’s just the tremors are driving me mad.

Kathryn:       Yeah, no I appreciate that.  It’s – I know that’s the thing that sort of gets to you the most isn’t it?  I think you said that it’s – even if you sort of like look as if you’re not tremoring, inside it’s just constant, is that right?

Richard:       Yeah, yeah.  I’ve got them 24/7.

Kathryn:       Yeah.

Richard:       You know, you’ve got the external ones that people can visually see but more subtle than that are the internal tremors, you know, my insides shake all the time.  There’s no respite, it’s just there constantly.

Kathryn:       Yeah, I know sometimes when Mum said as well – sort of like maybe she’s put her hand on you or – sort of like an affectionate hand on you or something and like times that I’ve cuddled you as well, you maybe don’t look like you’re tremoring but, you know, you can feel it, you know, on the inside that your muscles are just doing that constant kind of twitching.

Richard:       Yeah.

Kathryn:       So just to sort of like to give everybody a bit of a background about you then.  So you are currently 66 and you were diagnosed officially with Parkinson’s Disease in your early 50s but I think, you know, we can all see that – all of us that have known you obviously all that time – we can see that those symptoms, the very light symptoms are actually there for many years before.  I know when I was little, so probably anywhere from about the age of you being possibly even 35 to 40, you used to do this thing that was obviously quite – it was confusing as a child but you used to do this fixated stare and a lot of the time it would be that you’d sort of like just stare at a section on the floor, you know, and you’d just stare at it for ages and also your eyes would be quiet open.  So, you know, you could really see the whites of your eyes and you wouldn’t be blinking either and, you know, obviously to me as a child it just – it was just like, “Well that’s my Dad,” you know, doing that and I think it was such a subtle thing, it wasn’t sort of like a, “Ooh, you know, Dad’s doing a fixated stare he must have Parkinson’s,” it didn’t even trigger any of us to think anything.

Richard:       I was glaring at you.

Kathryn:       [Laughs].  I think everybody listening to this is probably going to fully appreciate that that’s the case.  But for you, obviously, you know, what were for you sort of those kind of initial symptoms, the things that you sort of like remember made you sort of like think, “Hang on a minute, there’s maybe something going on here?”

Richard:       Well strangely enough, I mean Pauline used to mention it, you know, “You’re constantly staring,” and I was never aware of it, you know, I wasn’t conscious that I was staring but on reflection when you thought about it, yes I must have been.

Kathryn:       Yeah.

Richard:       You know, sat here probably 20 minutes, half hour and even longer just staring out the window at nothing, you know, and my concentration had gone, my thought processes had gone, I was just effectively stood still or sat still –

Kathryn:       Yeah.

Richard:       Glaring out of the window and one of the things that the glaring indicates is that with Parkinson’s, it’s not just a movement disorder, it has other side effects as well and anyone can get it.  There’s no sort of inherited illness came my way, it was just – I was one of the unlucky ones that it’s happened to and I forgot what I was going to say now.

Kathryn:       It’s alright.  I was going to say actually, what’s quite interesting is obviously I know Grandad, your Dad, he did used to do a bit of the staring thing and his concentration went but he was obviously quite a lot older than you in a sense when that started happening and we have no idea if the Parkinson’s maybe did come from him but I do remember you telling me that – and I did quite a lot of research, you know, obviously I did my Environmental Studies and there was a big thing about how certain chemicals potentially can lead to people developing conditions like Parkinson’s Disease and I remember you saying – ‘cos obviously you did grow up in farming country – about being, as a young lad, going into the turkey shed, having to mix some chemicals and run out as fast as you can and, you know, maybe it is something that was maybe environmental or maybe it is one of those things that you’ve developed.  I think, you know, it’s – like you say, it’s often potentially inherited but it can also just happen.

But I know we were chatting originally about – I know you were saying that you’re just – you weren’t sure about – you sort of lost your thought there – we were chatting about the symptoms, so the early symptoms.  So you obviously had that fixated glare and I think – so just for anybody who’s listening, there’s a big difference between someone kind of switching off and staring, you know, sort of like outside and maybe having a moment just with their thoughts or maybe even sometimes say switched off a bit – there is a big difference between that and what you experienced as somebody with the Parkinson’s Disease.  It is an absolute – that in a sense the body just – you just become in a sense a statue.

Richard:       Yeah, one –

Kathryn:       Go on.

Richard:       As I say, one of the things that happened, you know, it affected me at work, certainly at work, you know, I was a policeman for 30-odd years.

Kathryn:       Yeah, very proud of you.

Richard:       Yeah, thank you.  What I used to find was – if I was interviewing someone, not in the formal sense, it could just be interviewing a witness to an event or something like that or it could be something more formal and people would start talking to me but I’d quickly forget what they’ve just said.

Kathryn:       Yeah.

Richard:       And I thought that was me just being a numpty but it just didn’t get any better.  So, you know, in conversation – I could have a conversation with – in fact your last question, I can’t even remember what it was now.

Kathryn:       It’s okay Dad.  We were just talking about your symptoms and your tremors.

Richard:       Yeah.  Yeah I know that’s the general thing of what you’re saying but, you know, I had that throughout my life.  So I was never particularly good at interviewing strangely enough and despite that I managed 30 years of, you know, being involved in that type of situation, but I’d never felt comfortable with it.  I was, you know, I always felt a lack of confidence in that area.

Kathryn:       Yeah.

Richard:       You know, and that came through even things like promotion examinations and whatever.  That would surface – it would surface there.

Kathryn:       Absolutely.  I’m sure it – obviously it’s a condition that’s going to affect every aspect of life in many ways.  I know with obviously being in the Police Force, you did your 30 years and then you went back as a civilian as well for a bit as well and part of being in the Police Force, especially at that time, there was different – what is known as employee benefits so you did have critical illness cover for a while and I think when you were a police officer – but then I think that ended when you became a civilian.  I think just – I’m not sure how but I think it ended and it was – I think that ended just a little bit before you actually got your official diagnosis which was very frustrating of course.  But you did have private medical insurance and you were sort of – ‘cos originally the doctors could see a bit of a tremor and they said, “Oh it’s just maybe like a benign essential tremor,” and, you know, obviously having my Mum as your partner and as your wife, you know, a bit of a Rottweiler at your side, she kind of really was like, “No, something more is going on,” and you were able to access the private medical insurance.  How was it for you when you were going for that kind of – that assessment to find out?  Was it – were you kind of – did you expect to be diagnosed with Parkinson’s Disease?  Did you think Mum was just being a fuss over nothing?  What kind of – what were your thoughts?

Richard:       Strangely enough, I thought I had a nerve trapped in my shoulder – of all stupid things to link to your brain but that’s what I thought.

Kathryn:       That’s not stupid.

Richard:       So I went to see my GP and he said, “No, I think there’s something more neurological to this,” so I went – not expecting at all to get a diagnosis of Parkinson’s but as soon as I met the doctor at York, it was weird because he stood away from me and he walked behind me as I walked into the room and I’m always suspicious of people like that so –

Kathryn:       Well yeah, police officer for 30 years, you don’t –

Richard:       So I turned around to sort of watch him.

Kathryn:       Yeah.

Richard:       And anyway, he ushered us to sit down, which I did and, you know, he asked the question, “Why have you come to see me?”  I said, “Well I think I’ve got a trapped nerve in my shoulder,” and I put that down to the fact that over the years I’d had many a rough and tumble with people in the street and on one occasion one person had rolled me over the bonnet of a car –

Kathryn:       Yeah.

Richard:       And I landed in the middle of my back on the kerbstone.

Kathryn:       Yeah.

Richard:       And that really hurt and it seemed to – that was the only thing I could pin it to at that time and anyway, he just took one look at me and said, “You haven’t got a nerve trapped in your back,” he said, “you’ve got Parkinson’s Disease.”

Kathryn:       Yeah.

Richard:       And I was not expecting that at all.

Kathryn:       No.

Richard:       I mean, I knew nothing at all about it other than the fact people who had it had tremors.

Kathryn:       Yeah.

Richard:       But I found out since, it’s obviously more subtle than that and it’s more profound than just a tremor and he did a series of tests of my coordination and found that parts of my limbs weren’t functioning as they should do.

Kathryn:       Yeah.

Richard:       I was dragging my left arm –

Kathryn:       Yeah.

Richard:       Which I wasn’t conscious of and I did – he did a test of touching my finger – my thumb to my middle finger and tapping it continually, first in the left hand, then in the right hand and in the right hand it was great, it did it all the time.  There was no break, no interruption but then when I did it with my left hand, I started off but within about three or four seconds the signal wasn’t getting through to my fingers and I thought, “Oh that’s weird.”

Kathryn:       Yeah.

Richard:       You know, and I thought, “That’s rather peculiar,” and subsequently later found out it was probably the answer to the question as to why I was having difficulty changing gear in the car.  I’d go to change gear, I’d be telling my leg to move to change gear to put the clutch down and nothing would happen, my leg would stay still.  I suddenly began to realise that the Parkinson’s affected one side of my brain to a large extent and to the other side of the brain a lesser extent and I don’t know if you’re aware, but one – your left hand side of the brain controls your right hand functions?

Kathryn:       Yeah.

Richard:       And vice versa.  Now what was I going to say?  I’ve gone off on a tangent again haven’t I?

Kathryn:       It’s okay.  The thing is, this is really, really useful because a lot of people won’t know a lot of these things and I think what’s standing out as well is that, you know, we all kind of thought that there was maybe symptoms there, we didn’t know what it was.  Everything to us in a sense seemed – there seemed like something but, you know, we didn’t know and – but then, you know, the fact that as well you just – literally a specialist saw you walk in to a room and just said, “You’ve got Parkinson’s Disease.”  So even though to us the symptoms were quite subtle, obviously for a professional, it obviously really stood out that they could see that.

I know you did have MRIs done and I know that wasn’t your favourite thing in the world to go in the MRI machine so you did obviously incredibly well to do that and I think as well, that in itself is quite a task because, you know, you a tremoring and you have to stay still and, you know, that’s a lot of pressure as well on you to try and really – obviously I think sometimes for you and I’m not saying this is the case for everybody but I know sometimes your tremors, just say like we may be at a dining room table and we’d be eating dinner together and your knife and fork can be doing the absolute greatest kind of drum solo going when you’re trying to eat your food and we’ll maybe say to you and I’ll maybe go sort of like or Mum will say, you know, “Roo –” or I’ll say, “Dad, you know, you’re tremoring quite a bit.”  ‘Cos you won’t – for you, you’re tremoring but you’re actually not noticing the tremoring and you’re also not noticing the sound of the cutlery on the plate but then when we say to you and I don’t know how it works but when you sort of like have that kind of, “Oh, okay,” and you seem to be able to sometimes sort of – kind of reset and control it.  I mean, that could be that you may be able to control it even – I mean it’s maybe just only 10 seconds or something and then the tremor will maybe start a bit but it seems, you know, sometimes you just – I think it must be very, very tiring to in a sense be battling the tremors.

Richard:       It is.  I mean, I mentioned before 24/7 I’ve got them.

Kathryn:       Yeah.

Richard:       And what I need to do is when I’m like that is to reset myself, stand up, have a wander around, you know, just to have a shake down, get it out of my body as much as I can but it’s difficult because sometimes I get awful sensations that run through my skin.  In fact when I first was diagnosed, I used to feel as if there was 1,000 ants walking over and crawling over my arms and it drove me – as I say, it drove me nuts.  I wanted to scratch my arms all the time but it was just an itch but it was very, very powerful was this itch.

Kathryn:       Yeah.

Richard:       That could have been the Parkinson’s or it could have been the medication.  I don’t suppose we’d ever know that.  But sometimes the – what’s known as wearing off, if you – when your tablets – when you’ve had your tablets say for four hours and you’re due another one, there’s a period of time where your body will probably crave that tablet again and your body starts reacting by wearing off and you get all sorts of symptoms crop up and one of the most difficult ones to deal with is – to be honest I can almost cry every time it happens because it’s so, so profound it really does upset me.

Kathryn:       Okay.

Richard:       And that’s – if you can imagine you have a hole in your feet and all your body – energy is draining down through every single muscle from your face, through your arms, through your fingers, through your body, through your legs, through your toes and is draining down and out through your feet and it’s tingling as it does this and you just feel – I just feel as if I think my time has come.

Kathryn:       Yeah.

Richard:       And that can happen two or three times a week.  It’s a most awful sensation and it can take me a couple of hours to get over it.  It just wipes me out physically and mentally.  I usually end up having to go and have a lie down and a rest if the – this feeling goes on for about half an hour to an hour and it’s just awful but it’s part of the wearing off apparently of the medication.

Kathryn:       I suppose it’s – I know you take a lot of medication.  We’ll chat a little bit about that as well but I suppose you have to take them really regularly and I think a big thing is, is that, you know, for people who are listening, with the medication, you know, from the different things we’ve been talking about – you do see a Parkinson’s specialist and a Parkinson’s nurse.  It is so essential for people with Parkinson’s to have their medication at the exact right time each day, you know, it can’t – it’s not even really meant to be a minute off because this feeling of – in a sense they’re on a constant kind of – they have the medication so the body gets that boost of what they need and it’s kind of then on a constant comedown until that next set of medication.

Richard:       If I go – if I can –

Kathryn:       Yes of course.

Richard:       If I go back to when I was first diagnosed and I started to learn a little bit about these things, what I found was – and it happens with everyone – everyone has a substance called dopamine which is released in the brain and this dopamine it helps the motor functions of the body – the movement, you know, so if you’re slow in movement it’s come as a result of some dopamine lack – lack of dopamine.  Now I mentioned before about the left- and right-hand side of the brain –

Kathryn:       Yeah.

Richard:       In one side of my brain, my dopamine levels were down to 20%.  That meant 80% of the dopamine wasn’t getting – wasn’t being used.  On the other side, 20% – it was down to 20% so there was an imbalance there if you like and of course, because I was having difficulty on my left arm, that meant that the right-hand side was the one with the bigger amounts – largest amount, 80%.  And I thought, “How am I alive with 80% of my brain function gone?”

Kathryn:       Yeah.

Richard:       But it was only controlling the motor functions.

Kathryn:       Yeah.

Richard:       And it’s, you know, people should realise the thing is with Parkinson’s, it’s not just about tremors as well, there’s the other side of it as well.

Kathryn:       There are lots of aspects of it.  I know we were talking about bits of the cognitive side of things.  I know you mentioned a little bit about the interviews at work.  Now, I remember quite a few times when I was younger, you know, you’d maybe say about conversations or maybe interviews that you’d had at work and, you know, you were very well regarded, you were, you know, people would come to you to do double checks.  I know you said your concentration in interviews and doing things like that you weren’t happy with but you were in a sense almost kind of like what I’d – a bit of a compliancy-type person.  If I say it like that people especially within the insurance world will understand what I’m meaning.

So, you know, you were obviously a bit of like what was known as a case checker and you were doing lots and lots of things and really, you know, finding some incredibly – potentially even minute details other people may not have seen and, you know, really, really good at checking those reports.  And you, obviously you’d been doing it for 30 years, you know, an incredible amount of knowledge and then you would go for interviews and you wouldn’t get the jobs, well sort of the different types of roles and one of the things that you got fed back was that people were saying to you, you know, they were friends of yours, people you had known a long time, people who were just like saying, “Oh Richard’s got this, he’s absolutely go this,” but then in the interview, they’d say, “Well, we know that you know this and we know that you have all the experience, you absolutely had this but in the interview, you kind of went off on a tangent and you didn’t answer what we’d asked.”

I mean, I know that was very, very frustrating for you at the time because obviously to you, you had answered exactly what they’d wanted, you know, because in your mind you were answering what they’d asked for.  I mean, how is that?  How does that feel?  That kind of I suppose frustration and confusion that people are saying to you one thing and you are answering them absolutely perfectly but then the feedback is, “Well actually no, you’ve not answered what we’ve asked.”  That must be very, very hard to kind of settle in your mind.

Richard:       Yeah, the – that was – that one on that particular occasion, it was a – I’d made an application for promotion to the rank of inspector.

Kathryn:       Yeah.

Richard:       I was already a sergeant and had been for a number of years but this was to the rank of inspector and incidentally we talk about memory, when I’d actually taken the promotion examination for that, my mark – I came second highest mark in the country.

Kathryn:       Good for you.

Richard:       You know, in that particular year so I was very proud of that.

Kathryn:       Yeah.

Richard:       But when I went for the interview, you know, I knew the type of interview it would be – it would be a case of, “This is a situation, can you give us an example of when you might have dealt with this type of situation before?”  And that was to give the assessors time to assess my skillset if you like.  Giving a practical example to demonstrate that I knew what I was doing.

Kathryn:       Yeah.

Richard:       And my mind went blank, completely blank.  I couldn’t think of the answers and I thought, “This is stupid.  Why can’t I –?”  And the three people, the officers – senior officers who were on the panel, I knew them all personally, I’d worked with them, I’d served with them.  They’d obviously risen up the rank structure faster than I had and the situation being – I knew that they knew that I knew what I was talking about but because I wasn’t actually describing it to them, they couldn’t take that for an answer so they had to mark me accordingly and what I found was, every single question that they asked me, I thought, “Well that’s pretty easy,” and then I tried to get some words out to demonstrate my experience to illustrate that and there was nothing there, there was nothing coming forward and I thought, “This is ridiculous.”  You know, I mean, I’ve been a law instructor for a number of years, I knew my law, I knew procedures because ever since I joined I had the mantra, “Do it right first time.”

Kathryn:       Yeah.

Richard:       “Get things right first time.”  Whether that’s dealing with an incident or writing up the reports afterwards.  If you do it right the first time, you’re going to save yourself a lot of hassle.  And anyway, the interview concluded.  I stood up and I said to the panel, “I’m going to say this now in all seriousness; I don’t want you to mark my exam.”

Kathryn:       Right.

Richard:       “My interview.  I’m very embarrassed by this.  You know as well as I do what my experience is but I haven’t demonstrated it today so I don’t want you wasting time writing up a report which is clearly not going to lead anywhere.”

Kathryn:       Okay.

Richard:       I said, “I’ll take your feedback in due course,” you know, which was the norm and I walked out of the room and into a dining area where there was a television on display and it was showing the Twin Towers coming down live on television.

Kathryn:       Right.

Richard:       And I thought, “Well that says it all about life.”

Kathryn:       Yeah.

Richard:       You know, what is this promotion for?  What am I actually doing it for?  And I couldn’t answer that.

Kathryn:       Yeah.

Richard:       But seeing the Twin Towers coming down, it was 9/11 – the actual 9/11 day.  I couldn’t believe it and I couldn’t believe what was happening in New York and I went home – I came home stunned.

Kathryn:       Yeah.

Richard:       You know, I was just – it affected me quite deeply ‘cos I was thinking, you know, all them people – poor people who have been murdered in that situation and here am I worrying about getting a promotion.  Well I wasn’t going to worry anymore and I made a decision at that point, “That’s the last time I’m ever going to bother going for a job interview,” or, you know, and so be it that became the thing and of all things, I actually counted – I created a countdown calendar.  There’s 321 days on it to my retirement.  I sat there – I sat there at work and I calculated how many days it would be until I could officially retire and it was just on three years.

Kathryn:       Yeah.

Richard:       321 days and I counted a 321-day calendar which I had on my office desk – on my office wall and I’d tick them off religiously every day.

Kathryn:       Good for you.

Richard:       Until my time came.  Strangely enough, I then worked an extra nine months, I don’t know why.

Kathryn:       I was going to say, you did ‘cos you went back as a civvy as well!

Richard:       Yeah, well yeah – the job I was doing at the time was – you mentioned – I think you mentioned it earlier, checking case files, checking the paperwork if you like before it went on to, you know, I had the authority to discontinue cases that had already started.  I had to review them for evidence.  I had to review them for – to make sure they met the standards that were set legally and whether or not there was a public interest to continue the matter or discontinue the matter, depending which.  Following national guidelines and working closely with the CPS, I became very good at it.  I would say almost expert at it.

Kathryn:       Yes.

Richard:       So when I actually retired, I had that skillset that I was then able to take forward when they decided to civilianise that role I was doing.  It was known as a decision – I can’t say it, decision maker in the Criminal Justice Unit and that became my job when I became a civilian.

Kathryn:       Yeah.

Richard:       And then ultimately, regrettably, I was facing redundancy but after this length of period of time, my health generally was on a decline.

Kathryn:       Yeah.

Richard:       Because of the Parkinson’s, things started to sort of creep in and cause me personal difficulties if you like and, you know, well – I’m quite happy to talk about them but –

Kathryn:       It’s up to you Dad, it’s completely – obviously it depends upon what you feel comfortable doing but I think we can obviously say as well at this point that you did obviously retire and obviously you did that mainly as well for your health because it did start to really struggle at that point and I think as well, you know, as well as having the Parkinson’s and obviously we won’t go into too much detail or anything because obviously there’s always like the Secrecy Act and all that kind of thing – is that, you know, I think people, you know, they don’t understand sometimes, say like somebody in a position like yourself exactly what you had to face every day.  So obviously with the checking the reports, checking the evidence, you know, there are – for many, many years, well over 10 years or so I would imagine at least, your job was to see things and to read things that nobody should ever have to see or read.  And, you know, I think again, everybody who is listening would be absolutely grateful that you were in that position and it feels like such a – it feels like such a sad kind of end in a sense to your career that obviously you did that and, you know, you were doing something which was incredibly hard to do and incredibly hard sort of like emotionally and mentally to face that every day.  And then to find that you have Parkinson’s Disease and in a sense when you’ve come to your time to retire, when you’re expecting sort of like, you know, “I’ve done all this, I’ve really helped society,” to then retire and actually face a lot of difficulties.

So something I think that people may not be aware of as well is how much medication can affect somebody who has Parkinson’s Disease.  So I know Dad, you take a lot of medication and it has been changed and tweaked a significant amount through the years.  So when people take the medications, it can take about three months for them to actually reach a stage where they’re working properly.  So it could be that, you know, I know you’ve had it before where you’ve took a medication for three months and then they’ve said, “Right we’re going to change you, obviously this is happening, you may be getting this side effect,” or sometimes there has been in a sense some personality changes and then they’ve said, “Right we’re going to tweak it and put you on to this one,” so then in a sense you’re having to withdraw off one set of combinations to then get up to the full effect of another one.

And I know there’s been a few things in there, I know we’ve chatted a little bit about me being able to share this so thank you, so there was a time where I know that you were put on some medications and I know that you felt absolutely amazing and you felt so, so good but you actually became very, very angry and were very much not yourself and obviously you had to change off that medication and I think the difficulty then is that it was quite at that time for you and obviously correct me if I say anything that you don’t agree with or you think I’m wrong with, but I know that was really hard for you because to you, you felt amazing.  You know, you couldn’t see this anger that you had and people were saying to you, “Well you’re going to have to change your medication,” so you’d just got to this point where you felt amazing and then you were having to change your medication and a medication change meant that you were on new medications which meant that you weren’t angry but, you know, you weren’t feeling anywhere near as good.

So I think there was almost in some ways, not in a bad way but it was almost kind of a bit of resentment that, you know, there’s a change because you felt amazing.  There was nothing wrong, you know, you weren’t angry, even though we could see it, you weren’t that and I know that there’s been a few other things as well so say like you had a medication for a while which made you really, really obsessed about clothes shopping and just for everyone who’s listening, my Mum has said very specifically that she wants me to mention that he bought 86 shirts.  He wasn’t working at this point but 86 shirts and I think the majority of them weren’t worn and were donated to charity in the end and I know, I think there was quite a few leather jackets as well maybe? And, you know, from the outside, we could see that your behaviour wasn’t – I mean you’ve not had – I know sometimes the behaviours can become quite – I know they maybe seem extreme but sometimes they can become quite an unhealthy extreme and for you, you know, you were in a position where yes, obviously you were spending that kind of money on the shirts and everything wasn’t brilliant but, you know, you were able to be okay, you know, financially and it was over quite a long time period as well.

And I think it’s, again it’s one of those things that people don’t – again, when you hear Parkinson’s you think tremor, you don’t think necessarily being obsessive over certain things or what the medications can do.  I know at the moment you are massively obsessed with jigsaws which I think is a really positive thing.  It’s – obviously it’s your coordination, it’s your concentration.  I know you’ve have a little bit of issues though with your legs recently because in a sense you are sitting way too long, potentially hours at a time doing jigsaw puzzles and again, time – like with the staring, time’s kind of lost to you.  I mean, what’s it – in a sense, it could sound a bit strange, but in a sense what is time like for you?

Richard:       Well I’ve got to manage my time all the time, excusing the pun.

Kathryn:       It’s alright.

Richard:       But I mean I was at one point taking 19 tablets a day.  I’m now taking 15 and there was a mixture of reasons why I was taking that amount because I had my Parkinson’s medication – I won’t use brand names –

Kathryn:       No, no of course.

Richard:       So we don’t get sued.  Yeah, where was I?

Kathryn:       You were talking about – you’d just gone down to 15 medications.

Richard:       Yeah 15 medications, so some were directly related to my Parkinson’s and what they were supposed to do is they were called dopamine agonists.  What they were supposed to do was mimic the effects of dopamine so to bring my dopamine levels back up to where they should be, if you know what I mean?

Kathryn:       Yeah.

Richard:       So I started this – they started me off on a low dose and gradually worked my way up to try and get myself levelled off and it can take three, four, five, six weeks for them to actually take effect and on one of the – the other drugs that I was taking at that time and still do, things that help keep the gut in check because the Parkinson’s drugs are very powerful indeed, they really are and so the other drugs are there to counter the effects of the powerful drugs.  So they, you know, they help keep my stomach under control or at least I thought that was what they were doing.  But what I subsequently found was that one of the – you mentioned the 86 shirts –

Kathryn:       Yeah.

Richard:       I didn’t go out and buy 86 shirts all at once.

Kathryn:       Now that would have been a shopping spree I’d have been proud of.

Richard:       But I did buy the 86 shirts –

Kathryn:       Yeah.

Richard:       Because I needed them.

Kathryn:       I know you needed them, I know.

Richard:       The fact that some of them didn’t fit wasn’t relevant.

Kathryn:       Yeah, doesn’t matter they were the wrong size.  Yeah, it doesn’t matter.

Richard:       They were a bargain.

Kathryn:       You were enjoying yourself.  I know.

Richard:       They were a bargain.

Kathryn:       That’s part of the northern man in you as well isn’t it though?  There was a bargain shirt there, you’re not going to miss that.

Richard:       Yeah, and that was the – if you like part of the fixation that you could get out of taking Parkinson’s medications and of course the other side effect is they can lead to people having a propensity to gamble.  Now I don’t gamble.

Kathryn:       Yeah, we’re lucky we didn’t get that.

Richard:       Yeah, we didn’t get that – it can have effects on sexual behaviour.

Kathryn:       Yeah.  I don’t want to know [both laugh].

Richard:       Well we’ll stop there then – and what else?  I forget off the top of my head now.

Kathryn:       Yeah, but lots of things.

Richard:       Yeah and of course we mentioned this to the consultant who said, “You’re going to have to come off those immediately.”  No, there was another side which I forgot to mention – probably the most important one of all was I was – I became quite an angry person and I was awful to your Mum.

Kathryn:       Yeah, well I think – yeah but the thing is it wasn’t you, you know, I think it was absolutely the medication Dad.

Richard:       But your Mum says – Pauline says that there’s the normal me, the normal Richard and there’s the Parky Richard.

Kathryn:       Yeah.

Richard:       And in that phase of my life I was in the Parky Richard phase and when the consultant took me off these – this particular drug, what I didn’t realise was going to happen was – I said, “What are you going to replace it with?”  And he said, “Well – I can’t yet because I’ve got to wait until the effects of the current drug you’re taking are out of your system and that will take three months.”

Kathryn:       Yeah.

Richard:       Because, you know, they – once you start taking tablets, they go to the molecular level in your brain, as deep-seated as that and it has to clear – it has to flush its way out of your brain and because the next drug that I would be put on wouldn’t work – they would counter – they would knock each other out.

Kathryn:       Yeah.

Richard:       They would cancel each other out so they’d be of no benefit and of course physically and mentally I would be upside down but it turned out – it turned out when I went into – when I came off this drug, I went through three months of absolute hell.

Kathryn:       Yeah.

Richard:       I – it was the darkest place I’ve ever been to in my life, you know, and I do get upset occasionally from talking about it but I will do.  All I wanted to do was sleep and I didn’t care whether or not I was going to wake up or not.

Kathryn:       I know.

Richard:       It was as bad as that.  I was just hoping that at some point I would die then I’d be free of all the difficulties that I’d been having.

Kathryn:       I know.

Richard:       And anyway –

Kathryn:       I wish I could hug you.

Richard:       Yeah.  They told me what I was going through and experiencing was the equivalent of coming off cocaine.  Now I’ve never taken cocaine or any other drugs for that matter other than prescribed drugs so I wasn’t aware of what that would be like but if it was like I experienced then I’m a good – sure advocate not to take illegal drugs because of the effect.  I mean, I saw it for 30-odd years when I was in the job.

Kathryn:       Yeah of course.

Richard:       The effect of illegal drugs but here we are with a prescribed drug and subsequently what happened was – it was apparently known that this drug had this side effect –

Kathryn:       Of making people angry, yeah.

Richard:       Yeah and it was one of the things that people had a propensity to sort of pick up and eventually they withdrew it so it’s no longer available but as you said right at the beginning, it was brilliant.

Kathryn:       I know, I was going to say, I know you felt amazing.  I don’t think you’ve ever felt like that again.

Richard:       I felt absolutely alive but I was on a different planet.

Kathryn:       Yeah.

Richard:       You know, I was in my own little world.

Kathryn:       Thank you for being so open and honest there.  Obviously, it’s really hard as your daughter to hear that but I do – obviously I do appreciate, you know, I appreciate obviously the way that you felt at the time and obviously I saw how you were at the time as well and I think that’s a really, really open account of it so thank you so much for sharing that, Dad.

In regards to things like the Parkinson’s symptoms, as we said, you know, before, people will automatically, I think, think of the tremors, that would be the most obvious clue for people.  We’ve mentioned about the staring.  There can be kind of a bit of a – in a sense a blankness, a bit of an emotionlessness – that’s not a word but you know what I mean – to the face sometimes.  Something for you as well – some side effects that you’ve had is you have lost your sense of taste and smell.  So there’s some extra things about that that maybe people don’t think of.  You know, we immediately had to make sure there was no, you know, there was a gas fire in the house and we had to immediately make sure that that wasn’t connected anymore because you would never have known if the gas was on.  We had to be so, so careful with that.

There’s other things as well so just going back a little bit towards the medications as well and like the concentration side of things. There was a good time as well when obviously my boys, when they were a lot younger and even now still, you know, like as you say, the Parkinson’s medication is very, very strong and, you know, there were times sometimes where I’d maybe come to your home or something or you’d maybe be at my house and I would find the medication possibly on the floor and you would absolutely swear down that you had had all your tablets and that you hadn’t dropped any, that you’d absolutely counted them out and things like that and you would have no – you would, you know, genuinely yourself you would have no – there was no sort of like, “Oh I’ve been caught out, I’ve been naughty not having a tablet,” it was absolutely – you were sure that you’d had that tablet and it was actually within the space of the children which could have been very, very serious so there was a good time where, you know, in a sense, I couldn’t leave the children alone with you and especially when they were very, very little.  Obviously as the children are getting older it is obviously much, much easier but, you know, we had to take a lot of extra steps that people probably wouldn’t think about.

I know another thing that you’ve experienced as well is what’s known in a sense as the Parkinson’s Pause and I believe that happened – you were in an airport with my Mum.  I think it’s happened a few times but that was the main one I could think of.  I’m just saying this for people so they can maybe understand a few extra things as well but I know with that one in a sense, you kind of forgot to walk in a sense.  You were just stood and you just couldn’t walk so what Mum had had to do was kind of –

Richard:       Can I?

Kathryn:       Sorry, go on.  Yeah, yeah, go on.

Richard:       Yeah, there’s too much coming for me in that lot.  If I can just break down a bit.

Kathryn:       Yeah sorry, I was – yeah, sorry.

Richard:       Regarding the tablets –

Kathryn:       Yes.

Richard:       My head was telling me, “I’ve taken my tablets.”

Kathryn:       Yeah.

Richard:       “So they shouldn’t be on the floor.  But how have they got there?”  And I couldn’t work that out.

Kathryn:       Of course.

Richard:       Because as I say, I was certain that I’d taken my tablets on time and of course that is one of the – if you don’t take your tablets, you don’t get the benefits of it and you mentioned earlier about it – you’ve got to take them within a pause of a few seconds.  You’ve got to think that your brain, whatever medication you’re taking is given for a reason.

Kathryn:       Yeah.

Richard:       And your brain becomes accustomed to having that amount of drug at certain periods of the day and once that drug has worn off, your body starts to crave it and – what was I going to say?  So taking my tablets on time became something that was – it was – I was frustrated, I was really cheesed off with everything to do with the illness and taking my medication.  I resented it but I knew I had to do it so we came up with the idea of having a little dosette box where I could divide my tablets up, all my tablets for the day, prepared in advance the night before and I still do that today.  And, what was I thinking of?

Kathryn:       It’s okay Dad.

Richard:       Yeah, your Mum keeps on top of me with that.  She – oh that was it, I have an alarm set on my mobile phone to indicate the time when the next tablets are due.  Whatever the tablet is, an alarm will ring beforehand but I still forget to take them.  So your Mum is usually there, biting at my heels [both laugh].

Kathryn:       And then when you’re at my house it’s me going, “Dad, your mobile phone’s going off!”

Richard:       Yeah.  Because I get distracted very easily.

Kathryn:       I know.

Richard:       That’s what happened – was it something else you just mentioned about the gas?

Kathryn:       I mentioned the Parkinson’s – oh yeah, the gas.  I was wondering where you were going there with that!  Yes, I mentioned the gas, yeah.

Richard:       Yeah we were in Suzie’s flat and –

Kathryn:       Suzie is his other daughter by the way, to the listeners.

Richard:       Yeah.  We were in her flat and someone said they wanted a cup of tea or something I can’t remember now off the top of my head but I went into the kitchen and I didn’t turn it on but someone put the gas burner on to boil some water.  Suzie didn’t have a kettle at that time.

Kathryn:       Yeah.

Richard:       And after a few minutes, I think it was Pauline came into the room and said, “Oh my god, the room’s full of gas!  What are you doing?”  And I said, “I don’t know,” but I hadn’t realised that the flame had blown out because it was near an open door.  The flame had blown out and the room had continued to fill with gas.  So anyone who had walked into that kitchen with a lighted match –

Kathryn:       Yeah.

Richard:       Would have gone boom in a big way.  Hence I know we have central heating – gas central heating now but that’s it.

Kathryn:       That’s very different, yeah, it’s very different with the pilot lights and everything, the safety mechanisms that are in place.  But yeah, I think, you know, a really, really good example there Dad and I think as well, the other thing with the loss of taste and smell as well that I think is important as well, especially now, is that obviously that is seen as one of the biggest clues that somebody has corona virus and obviously you can’t have that.  Another thing for people to understand as well is that if food started to go off slightly, then you’re not going to be able to tell –

Richard:       I can’t smell it, yeah.

Kathryn:       Yeah, and obviously as well – and you can’t taste it as well so my Mum also – she has some things where she can’t eat certain types of food which obviously you love, Dad.  And yeah, it’s very, very hard obviously to make sure that everything is okay and safe.  The other thing I was just starting to mention was the Parkinson’s Pause that you experienced.

Richard:       Oh yeah.

Kathryn:       Where in a sense you stopped walking.  Do you want to explain that?

Richard:       Yeah we were in Pisa Airport waiting to come – we’d been on holiday to Italy and we were in Pisa Airport coming back and there was no problem with me travelling, the insurance was covering me and there was no difficulty legally for me travelling there and it came to the point in time where Pauline and I had separated a little bit, we were stood about a length – the room was a length apart, something like that and the call came to go to board the plane.  And you know what it’s like, it’s just a mad rush –

Kathryn:       Yeah.

Richard:       When you get that call and the call came and I went to move forward and I couldn’t move.  I froze on the spot.  My legs just wouldn’t move and I thought, “This is ridiculous, what’s happened?”  And I thought it can’t be the crowd around me because, you know, I’d just shove them out of the way.

Kathryn:       Yeah.

Richard:       But my legs had sort of jammed solid and your Mum shouted at me –

Kathryn:       I can just imagine the tone and inflection and everything.

Richard:       Yeah.  She shouted at me to move forward, to put one step in front of the other and I couldn’t do it because the commotion of all these people around me –

Kathryn:       It was too much.

Richard:       It was just too much, I can’t stand the commotion and anyway, this – I think it was an Italian lady, bellowed out something in Italian and it was like the parting of the Red Sea, you know, the crowd just sort of opened up and allowed me to go through but with – Pauline had sort of come to lead me through and that was strange but a very unsettling period because I’m thinking, “If I’m out on my own and something like that happens, I’m going to become a statue.”

Kathryn:       I know Mum was chatting to me about it afterwards and she sort of had read a tip – obviously she’s done lots of research about Parkinson’s since your diagnosis and I know that she said that one of the things that she did then with you is that she kind of – if people can imagine – if you’re – if you were standing with your feet facing one way Dad, then Mum had put her foot in front of your feet kind of going across where your feet where and she said to you to step over her foot and said, you know – and the focus is, you know, not just – don’t just keep saying, “Walk, you know, come on, walk, move your legs,” it was, step over Mum’s foot and that kind of helps to trigger you to sort of feel that kind of what – I don’t know, processes that you need to be able to move forward.

But I know the biggest one – I think it’s probably one of the biggest kind of potential side effects – we don’t know absolutely for certain it’s a side effect but it is sort of like leaning as if it is absolutely so – is that last year you continued to experience a twisted bowel that was obviously very much complicated by the Parkinson’s Disease because again, people listening may think twisted bowel, that doesn’t sound very nice and obviously it was not nice for you at all.  So you were in lots of pain, lots of discomfort and lots of trips to the hospital to have procedures done to alleviate that but a big thing as well was the fact that the Parkinson’s medication is absorbed through the bowel so as this is happening and you’re potentially there, you know, with this twist where nothing is getting through for quite a few days at a time, that’s a huge impact upon your medication as well and your ability to cope with the Parkinson’s disease as well as a twisted bowel and I think it’s fair to say that, you know, last year you were obviously rushed for sort of – in a sense emergency surgery to a hospital about an hour’s drive from us due to it happening far too regularly and it got a little bit intense I think and I think we both were of the opinion at that point that – I think we gave each other a cuddle at that point and sort of just kind of nodded and looked at each other and were prepared for things to not go as we hoped.  And again, I mean, what’s it like when, you know, obviously you’ve got Parkinson’s to deal with, what’s it like when yet another thing suddenly starts to come up?

Richard:       Well to be honest I’d never been a fit person in all my life, you know, I’m certainly no Usain Bolt.  I had a number of ailments.  I mean, I was double incontinent at one point and I had a turps operation on my prostate to alleviate that side of it and that worked pretty well.  But it continued with constipation incontinence to do with the bowel and one of the things that I learned from that was that when you eat your food, it goes into your gut and then has to transit through your intestines and into your colon and into your bowel and out and with it being a movement disorder, things slow down.

Kathryn:       Yeah.

Richard:       So the medication you just mentioned is absorbed in the bowel but it was taking time to get into the bowel.

Kathryn:       Yeah, and getting trapped as well and not being able –

Richard:       And getting trapped.

Kathryn:       To go through.

Richard:       Yeah, and what consequently happened because the bowel itself is a substantial muscle.  I’ve never thought of it in many respects, but it’s a massive muscle, cylindrical in shape and it moves when it wants to move, not when you want it to.  And what consequently happened was – because the food wasn’t passing through properly, despite me taking Senekot and other medications –

Kathryn:       So that’s medications to help – just for people who don’t know, Dad – so I’m just going to say that, so that’s medications to help people in a sense have regular bowel movements so it’s something that goes through your system.  Okay, carry on.

Richard:       Yeah.  What was happening was that there was nothing coming out or if it was coming out it was coming out as a liquid as opposed to solid.  But what subsequently happened was, my stomach became so rounded, I looked like a barrel or a balloon and I was ready to pop at any point and Pauline insisted that I go to the Casualty which I did and the doctors that were there were quite surprised at how distended my stomach was.

Kathryn:       Yeah.

Richard:       You know, from having a 36, 38 inch waist I was probably in the region of a 49, 50.

Kathryn:       Well I was going to say Dad, you looked like you were pregnant with twins or triplets, it was – your stomach was massive and what was strange as well is that it had swollen so much that we could see some of the veins – some of the veins on the top of your stomach and we could see the blood in a sense pulsing through this because your stomach had been stretched so tight it was incredible to see.

Richard:       Yeah, well they said, if it had popped, the likelihood is I wouldn’t be here –

Kathryn:       Yeah.

Richard:       Because the infection would set in – no doubt set in and it would be an awful, difficult thing to sort of contend with.  But I was frightened of going in for an operation.

Kathryn:       Of course.

Richard:       So I said, “Well is there anything we can do in the meantime?”  They said, “Well, we’ll deflate it.”  So they did that – I won’t tell you how but they did that –

Kathryn:       Yeah, we won’t go into those bits.  I know, you know, let’s just – the listeners don’t need to know.

Richard:       And they kept me in overnight so to speak and the following morning I’d blown back up again so it wasn’t necessarily going to go away very easily but I wasn’t convinced an operation was necessary at this time.  I was thinking more or less, “Let’s just bide our time and see what happens.”

Kathryn:       This kept happening over six months didn’t it?  It just kept happening again and again.  You were maybe in A&E twice a week, it could then – maybe it was once every three weeks and it was just non-stop but I then as I say in December it really came to a point where they said, “Right, that’s it,” and they removed part of your bowel didn’t they?

Richard:       Yeah.

Kathryn:       Fit a stoma bag.

Richard:       Yeah, in fact I had eight emergency admissions throughout that particular period of a year until the last time I went in – the last time I went in, the doctors I think had said, “Enough is enough.”

Kathryn:       Yeah.

Richard:       “We’re going to have to do something about it.”  The problem being of course, with being Parkinson’s, your medications have got to be taken on time and having an operation doesn’t prevent you from having your medication.

Kathryn:       No.

Richard:       But my medication was in tablet form and of course they can’t feed tablets through a drip so my surgery had to be planned so that I would be awake to be able to take my medication before the surgery started ‘cos it was expected to last five or six hours.  I had to have my tablets before I started and they had to get to work quickly so they could get their operation dealt with and then back on the ward again in time to take my next dose of medication.  So it wasn’t a case – an emergency admission wouldn’t allow that because one of the things they needed was to make sure that there was sufficient staff on duty – sufficient specialists on duty to be able to call on if something happened during surgery and the only way they could do that was by having it done in York.  So on this last occasion when I was taken into Scarborough, they said, “You’re not going home, you’re going to York,” and I had the operation done and to be honest it was quite an easy operation and the recovery was quite easy as well but there’s been complications since.

Kathryn:       Yeah, you’ve got a – obviously you’ve got a stoma bag now and I know that’s having a while to adjust to it because again, you know, with the taking care of a stoma bag, the fact that you have to obviously spray a liquid onto the area to sort of like – I think that’s to get the stoma bag itself on and off isn’t it?  But then you have to clean it – obviously while you’re doing that while having tremors, that’s not necessarily the easiest thing.  I know you’ve obviously developed a hernia in the area as well so you now have a hernia belt.

But I think a big thing as well sort of like that’s coming up that is worthwhile chatting about – in five days’ time you are due to travel to Newcastle which is about two and a half hours away from us, for deep brain stimulation surgery.  So you have been in isolation for the last two weeks as of – just in case especially with corona virus.  Obviously there is a concern and the problem that we have as well – very much so is that none of us are allowed to – sorry, for anybody listening my six-year old is just doing us an accompaniment harmony in the background there – is that obviously we can’t go with you, especially with all the lockdowns and everything.  And I think we’ve had about three weeks’ notice from them calling to say, “You’re going to have the surgery in three weeks’ time,” so it’s all a bit intense.  I know that you and Mum are absolutely calm as anything.  I am panicking like mad, it is the only thing I am able to think about at the moment and what’s going to happen is – with the deep brain stimulation surgery for anybody who’s not sure – what happens is basically my Dad will be taken into surgery, there will be two holes placed into I believe his skull and his brain at which point wires are then going to be inserted through his brain and will go down through his neck area into kind of a small gadget within his chest.  You’ve obviously been told a long, long list of things that could go potentially wrong Dad and I know that obviously as well I believe this operation you’re going to need to be awake and that’s not something that I think anyone in this situation would find the most thrilling of things to be doing.  How are you feeling about it all?

Richard:       I’m quite upbeat really, I’m looking forward to it.

Kathryn:       I love the fact that you’re – no I love the fact that you and Mum are so calm and just – and I haven’t even spoken to Suzie my sister yet but I know me and Suzie are just going to be absolutely – for the day before, the day of and the day after, we’re going to be absolutely beside ourselves and you and Mum are just like, yeah, it’s just like you’re going for eye check-up or something.  You’re both just like, “Yeah, well –”

Richard:       Well I think I hold the world record for the amount of – most operations ever done in Scarborough Hospital on one person [both laugh].

Kathryn:       I was going to say, ‘cos as well as all this, I know you have had a hiatus hernia.  I know that there obviously is a few different operations that you’ve had – kidney stones, you’ve had – I know as well just for interesting sake for everybody that your heart is in slightly the wrong position as well, it’s more central to your chest rather than where it should be.  So you’re just absolutely kind of a – I think you’re a surgeon’s dream Dad.  I think it’s a case of, “What’s going to happen?”

Richard:       My heart’s also trigemini.

Kathryn:       Yeah, it’s – yeah I think you’ve got a bit of everything haven’t you?  You’ve got a bit of everything going.  But I think, you know, so you’re feeling obviously quite in a sense upbeat about it.  Usually with these operations, the partner – so Mum would usually stay in a hotel nearby.  She’d be given accommodation – again with the lockdown and everything that’s going to be probably not available so you are going to be – and obviously don’t want to suddenly switch the way your mindset is but, you know, obviously you are going to be on your own, you are travelling that distance and unfortunately we can’t be there with you and it feels very strange that I’m not going to be able to give you a hug beforehand before you go.

Obviously I have brought the boys to see you this morning so we’ve all been in the garden so you can see them playing and have sort of in a sense a bit of time with them even though we did obviously keep you inside so you could just see them through the windows.

I suppose the next thing is just to explain to everybody as well the next stages of the brain surgery is that it doesn’t just happen and that’s it.  So the – sort of like the averages that I think that they say, it’s about 18 months for the full recovery to happen after the brain surgery.  So after you’ve had it, you’ll be in hospital for obviously a little bit.  I think possibly a short amount of time because with everything going on, corona virus, they just want you home as quickly as possible.  But they’ll in a sense leave you alone for a few weeks or so, just let everything settle down, let your body adjust to the fact that it’s obviously had a very, very major surgery and then every – from then, sort of like every two weeks or so you will need to travel to Newcastle for them to tweak the settings of this kind of gadget that’s going to be within you to see if it helps or doesn’t help your symptoms with the Parkinson’s.

Now, something to bear in mind when people are having this thing is that, you know, you could go for this treatment and they could do the tweak and you could feel amazing and so for the next two weeks you’re going to feel fantastic, you could then go back at the end of that two weeks, they could do another tweak and you could feel dreadful, absolutely horrendous and you will not be able to have the setting changed until two weeks’ time.  And it’s going to, as I say, carry on – I mean there’s obviously – I’m saying all this, there’s probably people thinking is it worth it?  But there are a lot of people obviously who have had this surgery and I know you’ve seen some of them to speak Dad and you’ve seen that benefit that they’ve had and it’s something that you really want to do isn’t it?

Richard:       Yeah.  Yeah, it’s – well it’s been a long time coming.  I should have had this operation back in May but because of Covid it’s been put back.  But I’m not asleep all of the time – awake all of the time during the operation.

Kathryn:       Okay.

Richard:       There’s going to be a period of time when I will be asleep and they’ll wake me up to test it, you know, to switch it on and see what the reaction is in the brain and then they turn it off because like with any surgery, as you say, there’s the after-effect of surgery and there’s likely to be a swelling on the brain which they’ll have to sort of deal with – it will have to be dealt with and just to allow the things to settle down.  The thing that goes into your chest is like a pacemaker.  If you can imagine a heart pace­maker, it’s a similar sort of principle to that.  It’s called a neurotransmitter so the neurotransmitter stimulates the neurons in the base of the brain where the dopamine is normally sort of situated and it can be tweaked up and down.  It’s a rechargeable one so I’ll just be able to plug a device onto my chest and it will recharge it.

Kathryn:       Full-on Bionic Man, you’re getting there, aren’t you?  Your replacement hips as well.

Richard:       Oh I forgot about my hip, yeah.

Kathryn:       I just remembered as well actually, you’ve got that many things Dad.

Richard:       What they give you as well is a control device which means you can turn yourself on and off so I’m just waiting for the –

Kathryn:       Do not – I was going to say, do not let the grandkids get hold of that.

Richard:       Yeah, “Where’s Grandad?”  “Oh, he’s asleep, Mam.”

Kathryn:       I was going to say, I can imagine my eldest who’s nine being extremely sensible.  I can imagine the three-year old is just going to run off with it and maybe like my nieces, maybe hide the remote behind the radiator for a little while for you as well.

Richard:       Yeah.

Kathryn:       But obviously I’m sure everybody listening just, you know, is giving you the most biggest amounts of positivity and just don’t worry, I’m going to keep Mum distracted while you’re away.  Obviously I’ll throw some grandchildren at her so she can be well and truly distracted and yeah, just yeah, absolutely got my fingers crossed that everything is going to go well for you Dad and it’s going to give you kind of the results that you’re hoping for.  And hopefully what we’ll do is every now and then we will have you back on the podcast so we can talk about what everything’s like post-surgery so how you’re feeling and different things like that, if you’re happy to do that.

Richard:       Yeah I will do.

Kathryn:       Okay, sorry, go on.

Richard:       Just one thing.

Kathryn:       Yeah.

Richard:       I mean, I’ve opened up a fair bit today –

Kathryn:       Yeah.

Richard:       Not everything but I’ve opened up a fair bit –

Kathryn:       You’ve done loads, Dad.

Richard:       It might seem as if I’m an upbeat sort of person.  I try to be.  I can be – I can be as miserable as sin.  But the bottom line – the bottom line with this is I’ve forgotten what it feels like to be well.

Kathryn:       Yeah.

Richard:       And I’ll say nothing more.

Kathryn:       Okay.  Well I think that’s probably a perfect way to sort of end that then Dad.

Richard:       Yeah.

Kathryn:       So, as you know, because I know you listen to all my podcasts ‘cos you’re my Dad and you do that, we have a truth or lie feature.  Now I don’t have one for the last episode so you’re kind of kickstarting the next one and obviously there was a very, very clear topic that was going to be for your truth or lie.  So what I would like to do this time is for us – for people to decide if we’re telling the truth or lying about what our favourite James Bond films are.  So what is your favourite James Bond film, Dad?

Richard:       I suppose it’s got to be Goldfinger.

Kathryn:       Yeah?

Richard:       It was the first one I ever saw and it just took me into a dream world, you know, I wanted to be James Bond.

Kathryn:       Absolutely.  Absolutely.  And I’m going to say that mine is – I’m going to say Quantum of Solace.

Richard:       Oh that’s a good one.

Kathryn:       So, thank you everybody for listening and thank you so much Dad for joining me.

Richard:       Yeah.

Kathryn:       I’m going to be back next week chatting with Simoney Kyriacou from FT Adviser about dodgy lead generation firms and the steps that the industry is taking to tackle them and also reflecting on their recent diversity and inclusion awards.  If you’d like a reminder of the next episode please drop me a message on social media or visit our website www.practical-protection.co.uk and please also don’t forget that if you listen to this, especially if you’re in the insurance side of things, you can claim a CPD certificate for this too.  Either send me a message or go to the website.  Thank you Dad.

Richard:       Bye everyone.

Kathryn:       Bye Dad.

Richard:       Bye darling.

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