Archive for the ‘Parkinson’s’ Category

Parkinson’s is a progressive neurological condition. About 120,000 in the UK have Parkinson’s (1 in every 500). Most people who get Parkinson’s are aged 50 or over, but 1 in 20 is under the age of 40. The loss of dopamine producing nerve cells in the brain causes Parkinson’s symptoms – slowness, stiffness, tremor and other problems like pain, tiredness, constipation and depression. Drug therapy is the main approach, supported by a range of therapies (physiotherapy, occupational therapy, speech and language therapy, psychology), and occasionally surgery.

Parkinson’s UK’s ‘Get it on time’ campaign aims to make sure that people with Parkinson’s in hospitals get their medication on time every time they need it.
“Because people with Parkinson’s and their families are so aware of the importance of taking medication on time, their drug regime is easily managed when they are at home or at work. However, if they are admitted to hospital, and their medication regime is interrupted it can be difficult to maintain the timing of their drugs.”

CETL4HealthNE and Parkinson’s UK in the NE has collaborated to collect a series of narratives of people with Parkinson’s. Many of the individuals interviewed talk about medication issues generally, and hospital experiences in particular, but in the context of the wider issues of living with a progressive neurological condition. These narratives are designed to support the education and practice of health care professionals and help them deliver personalised care to people with Parkinson’s. Art and poetry portraying the experience of living with Parkinson’s is also available on the Talking Health Matters website.

Rosie’s Story Part One

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Right, well this is my story. My name’s Rosie, I’m 53 years old, I have two sons and they’re the focus of my life. I have had Parkinson’s disease for 23 years although I’ve been diagnosed for a lot less than that. Originally after I had my second son, I was told that I had Parkinsonial symptoms but not Parkinson’s disease and it was thought that there had been a cerebral incident during the birth of my son and that they said perhaps led to the problems with Parkinson’s. I started shaking down my left hand side originally and it became quite profound and I went for various tests and all sorts of treatment but nothing stopped the shaking at all. And that culminated in me having stereotactic surgery at ………. two years after ………. was born.

That surgery was extremely successful and stopped the tremor for about five years, five or six years but then slowly things started to happen again. Other symptoms that I hadn’t originally associated with the Parkinson’s started to be noticeable such as the rigidity of my face when I’m off, and I’m slightly off now but having to take medication I should be right in a few minutes. But the rigidity in my face makes my face look as though it has no expression and this caused me a lot of problems because I felt as though I looked as though I was being snooty or disinterested in people when they were talking to me and eventually I found out that it was something that was associated with Parkinson’s.

So I had the shakes and the rigidity in the face and then I started getting stiffness in my limbs as well and gradually my concentration I noticed started to wane when I was off. During this time I was working as a manager in the Health Service and I have had to stop working as a manager as it greatly affected my career over the years but I still work, I work for 20 hours a week as a receptionist in a local hospital and then of that it’s a great source of inspiration to me.

I get involved with all sorts of things with the health workers who involve me in the team a lot and support me a lot at work and also I get to talk to a lot of patients and they’re able to sort of feel an empathy with myself, for the problems that I have and the talent that we all have. But it’s concentration that really made it impossible for me to work as a manager; I could no longer chair meetings and things like that.

But I’ve always wanted my life at home to be kept completely separate from work and also from the health problems that I had. I like to keep the focus on life at home to be having fun and being a family and enjoying ourselves and I didn’t want the boys to grow up thinking of Mum as being disabled or in any way not a mum so I’ve always joined in everything that I possibly can and they don’t think of me as having a disability at all. They think of me as Mum who can do this and do that and they expect me to do things like sponsored walks and involve me in all sorts of physical things. They both love sport, both heavily involved with rugby. Rugby is my eldest son’s career, he’s a development worker and so they both expect me to do all sorts of things. And so far I’ve always met, I’ve had (inaudible) and that makes them feel very proud. Sometimes I think they have been criticised for not giving me space for my shakes and rigidity and so on but it’s really been a great incentive for me to keep going against all odds. They’re a wonderful source of inspiration to me.

I’m losing my thread now.

So, the start of Parkinson’s, as I say was when I had the cerebral incident, then I had stereotactic surgery and the symptoms came on further and I was diagnosed in the mid 90s. when I was diagnosed it wasn’t a great shock to me, because I more or less guessed that these other symptoms had meant that things had progressed and gradually I just came to accept that it was some form of Parkinson’s anyway. I had great support from my consultant who was a pioneer in Parkinson’s treatment. He’s continually suggesting different forms of medication or therapies for me to use. Different ideas for me to try.

Over the 23 years that I’ve been involved with him he’s given me great support and introduced me to other professionals who are expert; like the PD nurse who luckily for me is absolutely excellent and I tend to dip into services when I need them and then just maybe have no contact for months. And when I need help again they’re always there for me. I self refer and I find it’s a great system that I always know there’s a safety net there for me to turn to people if I need it; but if I don’t then they let me just get on with my life which is the way I like to run it. so in the normal course of events I, …. do you mind if we just.

No, we’ll stop.

Rosie’s Story Part Two

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I go to work, I socialise a lot, I try to have as normal a life as possible. I pursue all the interests that I had over the years and Parkinson’s has never really stopped me doing anything. It’s just that I’ve had to think of ways to enable me to do things rather than not doing anything at all. I still go horse riding when I can, but I have to go on a known, slow horse. I still ride my bike a lot; I have to just allow more time to get myself ready for these things. I travel a lot; I go away and see friends and so on.

But I just have to plan things out and that’s really what it’s meant in my life that I have to be a bit sort of over enthusiastic on the planning stages and get everything off to a T then things are fine. But I like doing that anyway so that’s fine. Basically I think what I’m saying is that Parkinson’s has never been the focus of my life; doing what I want to do and following my interests and following the boys and things like that have been the focus. Parkinson’s has had to fit in with that and I think that that’s perhaps the whole approach to the illness or the condition that I have is that I try to put it to the back of my mind and live life to the full.

My, the teams that have been involved with me have always helped me with that and suggested all sorts of things and ways of coping. My physios have told me about mirroring and what to do when I freeze and queuing and all this sort of thing which has been really helpful and exercise and following through; stretching exercises as often as possible and that’s really helped me moving and does help me a great deal.

I also take a lot of medication that has gradually built up from being very little medication to a lot of medication that I now take on a three hourly regime throughout the day. But I’ve been taught by the PD nurse and the other members of the team how to take it on time and to keep as long as possible moving and functioning normally. I’m not aware of looking any different or moving any differently when I’m on a good day; on a bad day I shake a lot but I can always do what I plan to do. Whenever I’ve had a problem and thought ‘right this is it, I’m going to have to change my lifestyle’ or whatever, my consultant and the team have always come up with a way round things that, either by altering medication or exercise or whatever so I have a great deal of faith in them. Changing the cocktail of the medication has helped in that I find that as long as I stick exactly to it, on the times, that you know generally I’m fine.

There’s been some problems when I’ve been in hospital and most of the time I’ve been in hospital for problems with my Parkinson’s so I’ve been on a neuro ward and when I’ve been in a neuro ward there’s been problems in getting my medication on time which I found really quite strange on a ward where there are meant to be experts in caring for people with Parkinson’s, but it’s surprising how little training or understanding that there is or was done in Parkinson’s.

More recently I’ve had a lot of input from social services and the health team who have together come up with a direct payments package where I buy in care, where I buy in care that I need when I feel I need it and that has worked a lot better than me being admitted to a neuro ward. I’m not being critical of the individual members of staff who have been available to me on the ward, they’ve all been very kind and professional people but they haven’t had intense training in Parkinson’s and how you MUST have your medication on time and when I don’t have it on time I go off and become really uncomfortable. And I’ve felt as though I’ve been a nuisance sometimes and I’ve had to ring again and say ‘you know I really do need my medication’ and so now when I go into hospital which I haven’t been to a neuro ward for over two years now since I’ve had the direct payments to buy in my care when I need it, I find that the staff are a lot better trained and know and understand why you need to self medicate or have your medication on time.

Self medication has been on the option on the couple of occasions when I’ve been to hospital and that works very well for me but I do understand the problems on the ward when there’s patients may have access to your medication, you’ve got to be very careful. So you lock it away all the time and so on, and you are responsible so I do understand the problems with implementing the schemes, the self medication but I think that the direct payment scheme has helped keep me out of hospital because I can ring up and get care and support whenever I need it and not on a routine basis, so that’s what I do and it works well for me.

I have a worker that I know, whom I’m pleased and comfortable to have in my home, she knows me very well, she knows exactly what to do when I’m feeling quite poorly and because of her we’ve been able to nip things in the bud. I just ring for her to come in and she comes and sorts me out and then goes and I get on with life for another few weeks. So it’s, that’s really helpful.

But recently I had an episode in hospital for something that wasn’t associated with my Parkinson’s and I asked whether I could self medicate when I first went in and I was really surprised when I was told that ‘yes I could do’ and they were very supportive, they were great on the general surgical ward and I was, there was no problems at all, those first days that I went in but then I unfortunately had complications and wasn’t able to self medicate because I was in the high dependency unit and had, had to have a transfusion and had drips and all sorts of things plus other medication and my Parkinson’s couldn’t be kept under control for a while ‘cos it couldn’t be given intravenously and I did definitely have real problems because I kept moving and became restless and so on and I had to be given medication that was not my usual medication and I had to take a (inaudible) that’s dispersible rather than the usual medication cocktail that I take and so I did become quite uncomfortable and so on until they refined the Parkinson’s medication. But the hospital team worked very closely with the PD nurse and my consultant neurologist and they were able to really help me so I was very lucky that there was such supportive staff who would listen to what I was saying or needed or what was uncomfortable and together we worked out a solution to it but that was only because of the interest of the staff who were nursing and their support.

But I think it’s very important where possible for people who have Parkinson’s Disease to self medicate when they are in hospital; it means that there’s less pressure on the staff and that the patient can regulate how they’re feeling and keep on top of it and keep them self comfortable. A lot of the time I’ve seen people with Parkinson’s on the wards who’ve not been listened to, not purposely ignored but people don’t realise because they’re softly spoken or their voice is weak then they don’t hear necessarily what somebody’s trying to say to them. So I think I would just encourage people to listen as much as they can to people with Parkinson’s who usually know their own condition, the way they’re the feeling best and to go along with that wherever they can.

I think that’s why as I say every individual that I’ve come across has always wanted to know more and to talk about it and to try and communicate what their needs are and so that’s what I always try to do. Sometimes people think that you’re being stroppy but it’s not, it’s trying to work out a solution that will work within the ward as well. My time in a hospital has always been very positive, all of the staff that I’ve ever been involved with me have been really wanting to find a solution for whatever problem I’ve had and I think as, as long as I can I’ll try and develop good relationships with them, because I’ve never come across anybody who hasn’t try to do their best for me or tried to work things out with me.

I think it’s really important for people with Parkinson’s to help themselves as well. I’ve found that people with Parkinson’s seem to be hesitant in coming forward and being assertive and saying what they’re wanting and following that through and that’s sometimes created a problem for themselves. I always believe in trying to communicate with people even if it’s difficult and difficult sometimes in terms of energy as well to actually sit down when you’re feeling dreadful and trying to put in your wishes or what you want to have done in to words is really difficult sometimes when you’re feeling poorly or off. But it’s so important to communicate and I think that we’ve all got to take responsibility to doing and I would just ask that professionals listen to what we say and I’ve always found that they have done and I think that’s basically my story so far.

I’ve got a deep brain stimulator that’s fitted, I had one put in at ……… about ten years ago and then one was put in ………. about five or six years ago and that’s helped me a great deal to keep my mobility and the staff that I came across on both occasions worked tirelessly to get the brain stimulator working correctly and I just found everybody so helpful and just little tips that the staff were able to give me helped me so much in life’s, when you’re at home and out and about.

I think that you know, staff don’t realise how much one little tip helps so much. I mean the things like stepping over a line when you freeze is something that I use so much especially when I’m shopping and I suddenly stop and (inaudible) happened before, I was told that tip by a physio, it was really a problem to me, freezing and I was avoiding shopping as much as I could because of the problems it presented. Whereas now I can get going again really quickly so that’s very helpful.

I don’t consider that I’ll deteriorate, I don’t think of the negative aspects of it, I just think of today and as I say, so far, so good, nothing’s stopped me so far. Just made me do things a bit slower and that’s how I think of the future really so I think positively and I’ll carry on doing all the things I do; maybe a bit slower in ten years time but that’s it.

Thank you very much indeed

That’s alright.

Matty’s Story (Part 3)

Please press the play button below to listen to Matty’s Story (Part 3) of his parkinson’s disease. Please click on November 2011 (on left hand side of the screen) to see parts 1 and 2.

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Have you had any experience of hospital medication in Britain then?

Not hospital medication, no. Oh yes I have because, I forgot, when we were coming back from Greece another time, we tend to go May and September every year. I was coming back from, I think it was Greece, I’ll tell you about Benidorm after. I went to Faliraki I think it was and I was on the flight coming home and me eyes started to roll and I passed out and I woke up, a short while, about half an hour later I saw, and I had my wife holding this hand and a stewardess holding this hand, it was quite nice! And when we landed, they took us straight into an ambulance, took us to the hospital, I was in overnight while they did the tests that they do on the brain and what have you and then I was released shortly afterwards. I think that they had, there was something about the air-conditioning on the aeroplane and they had to get rid of a lot of fuel because they had too much fuel and inside the aircraft I got really warm, I think that had caused me to pass out. So it was a scary really but it was, I was ok. And then I go to conductive exercise to help us to walk because of me, the stoop in me shoulders, getting me shoulders back and helping us to walk and I find that really useful. I go to the centre once a week during the term times for conductive education it’s called, but it’s all about how to turn over in bed and how to sit up and how to sit down. And she teaches you lots of tips on how to make life easier, and if you’re putting a jumper on, put your fingers in there and spread it round and it comes down and when you’re standing up from a chair, put your hands out here and that guides you, so, your weight properly so you don’t end up flopping and things like that. that’s really good. That’s not what I thought of. I’ve had the voice training and I think I mentioned it before, I didn’t say what it was, that’s really good and that’s sort of ongoing. We have meetings every two months where you have to go along and talk loud and I do me exercises, I try to do them every day, talking loud and I practise me high notes and me low notes and do it that way. I don’t know what else to say.

Ok, if you’ve got anything more to contribute, if not we’ll stop there

Is that enough stories or do you want some more?

Well when you were in hospital in Britain, when you went, after you came back from your holiday, were you able to manage your medication during that time or?

Yeah, yeah I’ve always been able to manage me medication

Even while you were in the hospital

Yeah. Me wife said to us one day, ‘I don’t know what tablets you take’ so I sorted them all out in the drawer in the bedroom and each bottle’s got the instruction on it as to what I take. One per day, one half an hour before food, three per day, four of these ones a day, these ones when necessary, these ones if necessary and so it goes on

How important is that for you?

It’s very important to take the tablets on time because, well your body tells you, your body tells you; you start to get a bad back and you start to shuffle your feet when you’re walking and I get pins and needles in me toes, especially before they start clawing, it’s like a bit of a warning that the clawing’s coming so it gives us a chance to try and do something, to alleviate it. But I know it’s a degenerative disease and I know it’s going to get worse so I’m hoping that they can find a cure. When I was at the Parkinson’s conference in Glasgow I went to various different talks and listened to the speeches and the scope of the problems that people with Parkinson’s have are absolutely enormous. They were on about genetics and they were on about patient, the patient perspectives and whether you should drink coffee or whether you shouldn’t drink coffee.
One guy gave his top twenty symptoms of he had of Parkinson’s which if you think about, to have twenty different problems wrong with you is, but er, when I was listening to what he was saying, the different symptoms, the problems with this loss of smell, the problems with your voice, the problems with your brain, the problems with your shoulders, problems with your elbows, problems with your knees, problems with your feet, problems with the toilet, problems with sex and so on, it was like the song ‘Killing me softly with his song’ where Roberta Flack went to see, memory loss is another symptom! Went to see the singer who sang ‘American Pie’, what was he called, Don Maclean, she went to see Don Maclean in concert and when he was singing one of his songs, she wrote this song ‘Killing me softly with his song’ and it was about this guy, singing her life and a lot of the speeches I listened to at conference, guys on stage telling the story of my life with the Parkinson’s disease and lives of every other person that has Parkinson’s disease.

Matty’s Story Part One

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Ok, well thank you for agreeing to take part in this narrative to support education in health care professionals. If you could just reflect on your Parkinson’s, how it started, how it’s affected you and in particular tell us about your medication and any times you’ve been in hospital as regarding your medication there.

It’s a long story but it started when I was younger, I didn’t know then that it was starting. First thing I really noticed was I had loads of saliva when I was getting up in the morning, the pillow was soaking wet and I mentioned it to the doctors and she just said something about giving us a salt tablet, but I never went down that lane and just forgot about it. And a few years later, about five years ago, I developed pains in me elbows and they examined us and said they thought I had tennis elbow and they actually, eventually I had an operation on me elbow to lift the tendons to take the pain away, and the pain went away. So it was decided that it was a success. But then about a year after that I got pains in me shoulder up here and I didn’t know what was going on and I went to the doctor’s and they put us on exercise and give us tablets and tried different things. Eventually the pain was getting pretty bad; I went to see the doctor and asked if anything could be done. she said ‘well you can try an injection’ so they said ‘we’ll put you on a waiting list for an injection but it could be quite a while before you get the injection.’

And then what happened was she sent for us again and said that there was a specialist coming up to hospital to a, a top guy on injections but I’d be in front of a load of students; did I mind going and getting the injection in front of students? So I said ‘No, not at all’. So I went to hospital and they examined us and his decision, the top man, guy so to speak said that ‘this man needs to continue with his exercise and I’m sure with continual exercise this shoulder will get better, nothing really to worry about’. And I thought ‘mm, yeah well’ so I left the room and I was at work later that week, I used to work for a trade union in the mornings and the inland revenue in the afternoon and one of the jobs that I had was to liaise with the debt collection unit and they had a big meeting with a colleague the big boss called a big meeting and outlined for two hours the plans that they were planning to reorganise the unit and at the end of the meeting she asked me for me comments on, from a trade union point of view so what the union thought of the proposals and I’ve always used a system called a mind map where I write down the main points of any debate and then I can recall what’s going on and make the points. And when I looked down at the paper, it was blank and I’d actually frozen for two hours and not realised and I hadn’t took any notes, didn’t take any notice of what was going on so I just made the comments up, said something like ‘the union will watch what’s going on and make comments as the trial goes along sort of thing’ and she said to us ‘oh right and I’ll have a chat with you after the meeting’. Then after the meeting she asked us if I was alright and said I said ‘well no, I’ve been having problems with me shoulders and other things which I don’t really understand’ and she says ‘well, perhaps you need a holiday’ and I said ‘well I’m going on holiday next week anyway as it happens’.

So I went off on holiday, I was 58 at the time and I’m 61 now and went to Greece on holiday and when I was on holiday I got a phone call from the civil service saying that if I wanted to apply for an early retirement package, I could and they would let us go but they had to know quite urgently. So I discussed it with the wife and decided that I would take early retirement and when I went back after the holidays, a couple of weeks later, took early retirement and I had quite a lot of leave left so I left it at that, I was quite happy to retire because of all the problems that I’d had. Me lump sum wasn’t quite as much as it should have been and me pension wasn’t as much as it should have been but I was quite happy with the settlement and then the doctor sent for us and said after I’d left the room with the injection, going back a bit, the, one of the young doctors who was studying Parkinson’s, said that he thought I had Parkinson’s Disease and all of the other doctors said ‘no he hasn’t, it’s ridiculous’ and my doctor sent us to the hospital for a check up to rule it out. And I went to see a consultant and within two or three minutes he confirmed that I was in the early stages of Parkinson’s Disease. So I went back to the Civil Service and tried to get medical retirement and they said because I wasn’t ill or off sick when I left I couldn’t have medical retirement. So I took them to a tribunal and won and eventually got me, got the pension and me lump sum so that was something gained from it.

But then the problems started with the Parkinson’s Disease as it crept on, different, and I started on the medication and the medication got more and more I think I take about 16 tablets a day now. Biggest problem I’ve got is clawing of the feet, your feet claw every morning and if I don’t take the tablets I get all sorts of problems. That’s really just the story to date.

Can you elaborate on, if you don’t take the medication what kind of problems?

If I don’t take the medication, I start to shuffle me feet, I can’t walk very well, if I walk 50 yards I get a terrible bad back, and as I said before, me feet claw, me big toes goes under like that and I can hardly walk and those attacks last for about 20 minutes or so. Funnily enough I was at the World Parkinson’s Congress not so long ago and before I went I’d rang the Parkinson’s nurse to ask to see if I could have some assistance because me clawing of the foot was getting worse and she recommended a dose of soluble Madopar in the morning, 15 minutes before I get up. But because of the system you have to talk to the Parkinson’s nurse, the Parkinson’s nurse has to talk to the professor, the professor has to, the consultant has to sign the prescription, that then gets faxed to the doctors, you then have to get an appointment at the doctor’s to get the prescription. And I couldn’t get an appointment for two weeks so I went to the World Congress without the medication and I was having terrible problems. And I saw an American physio at the congress who put her fingers in-between me toes like that and bent the toes back, up and down and she told us to separate the toes with wrapping some gauze round in-between the toes and to get a toe separator. And I did what she told us to do and it makes controlling the clawing of the feet a lot easier. So that’s like a work round if you like. Doctor also give us quinine tablets to help with that. I’ve had all sorts of tablets over the last three or four years, they had us on cholesterol tablets, they had us on blood pressure tablets, had us on the statins, symvastatin and Atorvastatin Then they found out that the statins was damaging me knees so they took us off the statins. At the moment I take Levodopa, Mirapexin and can’t remember all their names off hand, I’d have to look them up but there’s about, I take about 16, 17 tablets a day and there’s lots of other side tablets for dealing with the other effects of Parkinson’s like the constipation and the sex problems and all the other sort of things that occur you know. It’s, ah but you have to put a smile on it.

The pluses are: I went to voice therapy sessions and that was really good. I got exercises to do every day so that I talk a bit louder. I like doing karaoke so I sing a lot of karaoke and I like writing odes and poems and I’ve wrote a few for Parkinson’s over the years but I never won the competition, the Mervyn Peake Awards but never mind, I think they’re good. What else can I tell you?

Have you ever been in hospital?

Oh yes, I knew there was, when I was in Greece, this year, May this year, I took a funny turn during the night. Me eyes started to roll and I was frothing at the mouth and then there was blood coming out me mouth. I can’t remember any of this, this is me wife’s version and they took us into hospital and I was in hospital for four days I think and, on the Island of Rhodes, that was an experience and a half! The first consultant I saw said that I’d had, he thought I’d had a very mild stroke and I recovered from it and I think he was correct. The second consultant that took over because it was a weekend when I went in, she said I’d had an epileptic fit and put us on epileptic tablets which didn’t make any difference to us, I was just slowly recovering from the, I think, the mild stroke that I’d had. So I rang the Parkinson’s nurse in England and said oh they’d put us on these Zafiron tablets for epilepsy and when we checked the dosage they’d put us on much too high a dosage. So I stopped taking them altogether and the condition improved so much so that after I was allowed out of the hospital after about four days and went back to the hotel. Funnily enough when I went back to the hotel I had a big notice on the television screen ‘Welcome to Mattyoke’ so they had a karaoke in my name that night. And I actually sang a song, there you go.

Were you able to manage your medications while in hospital?

I can manage me medications, yeah I use, I put them in compartments for seven days and put them in the different compartments so I know exactly which ones I’m taking when I’m taking them.

Did that differ when you went into hospital? Were you able to?

I was ok in the hospital because they left us with me tablets to take; they didn’t take me tablets off us. I know there’s a ’Get in On Time’ in this country but they seemed to be fairly slack in Rhodes, so much so that, all I remember is that a family were, actually stayed overnight in the same room as the people that were in hospital and they used the same toilets as us and the consultant told us not to watch television and the woman opposite had a television on in front of us, you know it was crazy. It was certainly an experience and the insurance was a mess, all they paid for was one taxi. But I’m not worried about that really but I’m very careful about what insurance I take out now when I go abroad.

Matty’s Story Part Two

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But this guy showed, he showed how to cope with the disease if you like by making fun of it by facing right on and because; it’s funny but when you concentrate seriously on something like making this speech I’m doing now, you forget your Parkinson’s symptoms and they tend not to show whereas if I get nervous or am in an situation then I start to shake and I have all sorts of problems you know. But he was saying stuff like ‘don’t enter an egg and spoon race if you’ve got Parkinson’s’ and he put an egg on a teaspoon and ran across the stage and the egg fell off and he said ‘thank you’ to the staff of the place for hard boiling the egg. (laughter) He was really good, but …. I was talking about music wasn’t I? Music being therapeutic. This thing I’ve got about being able to write odes started when I was in the civil service when I was running a section, they used to ask us write a short ode about somebody who was leaving and I could do them quite quickly.

When in Bendiorm for me 60th birthday and we’d been to see the Everley Brothers in concert and, well not the actual Everley Brothers but a tribute band and they also had a tribute they had a tribute Beatles band as well. So we’re going to the karaoke bar quite late, there was about half an hour left and when we went in, the DJ said ‘Oh, Matty’s come in, I’m going to get him up’ so I got up to sing and I had a look round and there was lots of little children sitting in the front from about five to 13 from different families that put them altogether at the front. So I thought. ‘oh I’ll do a camp version of Dedicated Follower of Fashion’ so I sang Dedicated Follower of Fashion and put me (inaudible) leg out and did me hips and shoved me things and I said to the kids at the front ‘when I sing Oh Yes He Is, you sing Oh No He’s Not’ so this went down really well and I sat down and listened to the rest of the show. Then shortly after midnight she says ‘well, the next song is the last song in the karaoke, as usual, you decide who you want to sing the last song’ and all these little kids at the front ‘Matty, Matty, Matty’ so I sang ‘Rainy Day Woman, Everybody Must get Stoned – Children Must Not get Stoned’ and so on, making me own stuff up and when it finished she said ‘well that’s the last song for the night, thank you very much’ and I was getting off the stage, they played ‘Because I got High’ by Afroman and she said, as I was getting off the stage, I joined in with the kids ‘because he got high, because he got high, because he got high’ and the kids were singing ‘because he got high’ and the DJ said ‘come back, come back and sing it’ and I said ‘well I can’t sing it, I don’t know the words’ I just really knew the chorus, so she said ‘make it up, you can do it, make it up’ so I just made it up on the spot and I sang something like ‘I was going to have a birthday tea, but I got high; she was buying me a dvd, but I got high; there were no presents for me and I know why .. because I got high, because I got high, because I got high’. And I was thinking all the time of words that rhymed when I sang the first line and I said ‘I was going to book my grandma’s flights, but I got high; she was coming here tonight, but I got high; she’s stuck at Heathrow tonight and I know why … because I got high’ and so on you know. There was one verse where I sang ‘I was going to make sweet love to you but I got high; send you flowers too, but I got high; my wife said we’re through and I know why … because I got high, because I got high’ When I found out afterwards, the next night I went to the bar and somebody said ‘you must sing that song’ and I said ‘well I can’t sing it, I’d had a few drinks and I made it up, so I couldn’t possibly remember it’ and they said ‘well just sing the real one because we want to hear you singing it’ so I got up and sang the real one and when the words came out on the stage, I couldn’t believe it, they were absolutely really dirty words you know, a bit over the mark, so I couldn’t sing them, so I changed the words and I’ve been changing the words of that song ever since and this is a helluva long story you know!

I was at the at the Parkinson’s Annual General Meeting and they had a karaoke on the celebratory night and I got up and sang ‘Because I got High’ but I sang something like ‘I was going to the Parkinson’s Meet, but I got high; I could not move my feet, but I got high; now I’m knackered and deadbeat and I know why … because I got high’ because everybody gets high that’s on, that takes Parkinson’s drugs so there you go. The doctor said there was ‘what songs do you sing at karaoke’ I said ‘oh shake, rattle and roll, shakin’ all over’. It’s funny because I was at the pub last week doing a song and I forget what the song was, I think it was a rock and roll song. One of the rock and roll ones, I think it was ‘Kid Rock’ ’All summer long’ I was singing and I tend to move a bit when I’m singing it you know and the microphone kept going off. So I said (inaudible – to the DJ???) during the instrumental bit ‘this microphone keeps going off. Can you do something about it?’ And he said ‘stand still, stand still’. I said ‘you’re asking somebody with Parkinson’s to stand still?!’ and of course everybody in the place was howling, they thought it was a big joke you know. I think that’s what you’ve got to do,

Charles Slater’s Story Part One

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Ok, well thank you for agreeing to contribute to this narrative to support the education of health care professionals. If you would please just reflect on your Parkinson’s, how it started, how it affects you and in particular if you can talk about the medication you take and particularly your experiences in hospital about taking medication.

Well, where are you now? 2010, so 2009 in April, I had open heart surgery at hospital. As a consequence of that after I had obviously recovered from the operation and gone home I had to undertake some physiotherapy, especially designed for cardiac patients. During the course of that course which lasted six weeks, six different sessions one of the nurses noticed that I had pronounced tremble on my right hand and asked if she could have permission to write to my GP about it.

She wrote to the GP and I went to see him as a consequence and his expression, together with my wife, and his expression was ‘well you’ve got some mild Parkinson’s’ which upset my wife more than it upset me but eventually we decided to go back and he referred us to a consultant, – at the hospital where I had a consultation and she diagnosed Parkinson’s and recommended the appropriate medication. And that’s how it came about and I’ve been on medication since which has just recently been double in strength because the old medication didn’t seem to be getting anywhere.

Is there anything you want to know about my symptoms and one thing and another?

Yes, if you

Well, there is a pronounced tremble that’s now spread to my left hand as well. I can at times control it and a lot of my friends say ‘well sometimes you’re not shaking at all’ whereas now I am. Whether that has to do with what I’m doing or not I don’t, don’t really know. The medication makes me extremely lethargic. Even though I might have a good night’s sleep, which I don’t do generally get, I’m tired very, very quickly after breakfast and tired the rest of the day. when I combine this with the work I’ve got to do to look after my wife at the present moment which obviously is not permanent, but nevertheless is there every day. I’m sort of acting as an unpaid house husband at the present moment and doing lots of things that I haven’t done in 54 years which it will be when we celebrate our anniversary next month. The medication does cause me drawbacks. One of the main things being constant constipation and I have to take something, I mean that’s the irony I suppose of treatments today. I take medication and I’ve got to take something to counteract the constipation, every day of the week. Sometimes it works, sometimes it doesn’t but it’s a constant source of worry. I think the worst aspect as far as I’m concerned is that it’s increased my anxiety. I was always a little bit anxious about the time of getting somewhere; catching a train, catching a bus, whatever and my wife would tell you that we were always half an hour to three quarters of an hour early for everything that we had to do. That was because of me and my anxiety.

I’m conscious of the fact that it’s a progressive disease and that I don’t know where it’s going to end. Though the consultant said she wasn’t expecting me to die in the next two years when I asked her how long I had! I don’t think she was terribly amused by that question but I thought it was proper to ask it. And it’s a measure of my anxiety that I did ask it. I mean I suppose most people would have said ‘well, just take it as it comes’. Every time I went to physiotherapy, particularly the cardiac physiotherapy I met somebody in a wheelchair who maybe didn’t have Parkinson’s but nevertheless it had its effect upon me in such a way that I envisage myself in a short period of time ending up in a wheelchair. Now
ironically, ironically my wife has ended up in a wheel chair as a consequence of the accident and I’m doing all the work for looking after her.

I get tremendous treatment from the National Health Service. I really have nothing but praise for what they do for me and in particular the fact that you’ve got a telephone number with a specialist Parkinson nurse on the other end who, for four days a week is available to talk to you about anything. It’s a consequence of (telephone rings. Interview stops. See Part 2 for continuation)

Charles Slater’s Story Part Two

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Ok, so you were talking about the NHS

One thing I do get is the support from the hospital is very, very good indeed. If I haven’t mentioned it already, there is a nurse at the end of a telephone, a specialist Parkinson nurse at the end of a telephone who you can speak to four days a week and has six monthly checks or alternatively is available for an interview at any time. An example of that is the fact that she’s just on recommendation to my GP recommended that my medication that I’m taking, principally taking at the present moment should be doubled in strength. I don’t know whether there’s anything else you want me to talk about?

Well, have you any, had any experience of being in a hospital and being able to manage your medication?

Well I was in the hospital as a consequence of the heart surgery in April of last year, that’s 2009, and of course my medication was administered to me. Once I had come home I’m responsible for looking after it myself. Now whether it’s old age or something else, my memory’s not very good and every now and then I completely forget to put the medication out the night before for the next morning. I don’t forget to take the actual medication because I catch up by putting it right the next day; and that’s the only management I actually do.

So how was it different being in hospital?

Well in hospital they brought the medication to you with a glass of water and everything set out and obviously that’s an advantage. When you’re at home you’re relying upon yourself. Now, I’m 81 going on 82 and I suppose my memory has been affected or generally and I can be easily diverted from what I’ve set myself out to do and the result is I could think ‘yes I must do my medication, get my medication ready’ say about five or six o’clock in the evening before we have our main meal. But if something comes along, a telephone call or a visit I can completely forget to do that job and then realise the next morning I haven’t put the medication out. It doesn’t mean I’m not going to take them, I do catch up, it’s just an example of what happens to me from time to time but I suggest to you that that’s possibly old age and not Parkinson’s.

Ok, so there’s no negative effects or adverse effects being in hospital with your

Well there are no negative, apart from you know recovering from a major operation, there were no negative effects at all. In fact I’ve now been discharged by the Cardiac Unit at the hospital just recently.

Ok, is there anything else you want to discuss about your, talk about your Parkinson’s relating to your medication?

Well I don’t know, this is for some genius to invent medications that don’t have side effects. I mean as I’ve mentioned to you, the principal side effect is constipation and it can be quite acute and severe at times. And irregular, but of course there’s nothing I can do about that because I suppose the answer to that is you’ve got to take your medication for your heart complaints. I suspect that that’s the one that’s causing all the trouble and it’s not the Parkinson medication that has that side effect but I’m not quite sure about that. There’s nothing else I can say, it, in my work, when I worked, which is 10 years ago, I was a lawyer in a private practice and I’m going to lead up to what I’m going to tell you about. I was also heavily involved in local government politics, as a consequence of which I made a, had to do a lot of speech making; the Parkinson’s has to a certain extent interfered with that ability to speak because I have trouble swallowing and I’m waiting now, an appointment to undertake some speech therapy which is really ironic as from about the age of 14 I spent all my life being a public speaker. But that, my wife and I, we’re both Jewish and we give lectures, we give lectures on the Jewish religion and I’ve had to give those up temporarily until I can find a way of curing my problems over swallowing and that’s upsetting to both of us.

Ok. Is that everything then?

Well it’s everything I want to say. I mean I’m willing to answer any questions you want to put to me. I can’t think of anything else. Sometimes I get depressed about it obviously, most times I’m not depressed but I do think about it, probably too much and because of my age I have an advantage in that the growth of the disease would be very, much slower than for a younger person so I really shouldn’t get too depressed about it and one thing I’m conscious of and I can’t control it, I shouldn’t talk about it all the time and if someone, this is a point that might be considered by people. If somebody comes up to you and says ‘you do look well am I supposed to say ‘well I might look well but I’ve got Parkinson’s’ or do I say nothing? And I haven’t made my mind up yet about what is the correct way of going on especially with people I haven’t seen for a long time.

Ok, well thank you very much

Matty’s Ode

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(inaudible) Glasgow, there was a stall had, an American stall and they had a book called PD and it was P, the book’s over there, P double E, D double EE was what they call Parkinson’s Disease and it was a book about how to explain ‘my mum has Parkinson’s’ sort of thing, it’s the same sort they have, the Parkinson’s Disease society have here. So I got a copy of the English, our version, the UK one and give it to the lass on the stands who thought it was great. But we also (inaudible) had quilt on the display with an ode in the middle and I wrote the ode. But this is the one I wrote after the conference:
Scotland the Brave
And the Geordie heart
PD held a meeting
They came from near and far
Some by aeroplane
And some by motor car
The four inside the Glasgow Hall
Were we allowed to meet
Each had to register their name
Before they got a seat
We gathered daily one and all
To listen to the pure
When had he hardly seated
The speaker shouted ‘Cure’
I smiled and said to Angela
‘Is it the cure for me?’
I’m off to see if Steve
Is still playing on the Wii
There were some long sessions
All technical and deep
And Matty had his feet tweaked
So that he could sleep
With the lectures five times daily
Your delegates felt the strain
Showing the big, wide world
Newcastle’s quilted grail
(inaudible) as the one about the quilt is it? That’s Percy Hedley. That’s the one I’m working on. I saw the, when they had the Mervyn Peake award, the idea, the painting and it was called ‘The Healing Stream’ so I’m going to write a poem called the Healing Stream but I haven’t quite finished it yet. I’ll just nip upstairs and get the ….

Alexander’s Story

Reflections of a grandson

This piece of creative writing was loosely based on a 12 year old grandson’s memories of his grandfather in the later stages of Parkinson’s disease. There is an acute awareness of the multi-facetedness of the condition, starting with hallucinations and moving on to the full range of motor and non-motor physical signs including masked face, flexed posture, tremor, swollen ankles, incontinence and tendency to falls.

Reflecting on his grandfather with his mother after reading the piece, Alexander makes the point that he lived a long time with disease without it seeming to affect his roles in the family. However his grandson expresses sadness at his struggles with simple everyday things at the end of his life – finishing a meal in a timely fashion, getting his shoes on, moving safely from place to place. He remembers his grandfather’s big old hands and holding them in his small hands to try to stop them shaking.

‘The old man sitting in the chair near the window, looked out over the lush Northumberland countryside. But what he saw was much different from reality.
He saw army tanks progressing over the crest of the hill, he saw planes landing on the rough concrete courtyard beneath him.
His white, unbrushed hair with a tinge of silver shone with the afternoon sun. He had bright, blue, boyish eyes which looked out over the imaginary scene that he had remembered from his days at war. He reached up with his scarred hand with a dressing on it covering the skin cancer treatment (caused by his exposure to sun in North Africa) to touch his expressionless face. His skin was rough and unshaven. He had dirty glasses, with a broken hinge repaired by masking tape. He shaped to get up. His rounded shoulders and poking chin leaned forward, both hands with a juddering tremor reached back painfully for the arms of the chair. With a shuffling walk and posture bent over his dirty metal zimmer frame he made his way slowly to the toilet.
He wore a striped shirt, dirty from food stains covered by a V necked, no sleeved pullover dark with dirt and bobbled from overwashing. His urine smelling trousers, dirty slippers and socks with the cuff slit prevent them hurting his swollen ankles, finished off his hospital outfit.
He did not know how but he landed in a crumpled heap upon the floor. One of the patients raised the alarm and as had happened many times before, the nurses helped him to his feet’.

Helen’s Story

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Ok, well thank you very much for agreeing to take part in these interviews. What I would just like to ask you is if you could just reflect on your Parkinson’s, how it started, how it affects you and particularly about your medication and particularly your experiences of taking medication in hospitals

Right, well I was diagnosed in 1997 but looking back now I can see that I had symptoms a lot earlier than that, but it was the people I worked with who realised that I wasn’t using my left side and I did become quite ill at the end of that term and I was referred to a neurologist which was a surprise to me and very worrying. And I, in a sense I was relieved when I did go to see the neurologist and he told me that he was almost 100% sure it was Parkinson’s and I had suspected things much worse so in a sense I felt a bit of relief. And he said to me at the time I can’t cure you but I can help you manage it. And so I thought ‘that’s fine for me’ and I hoped that I would get settled on some medication and then just be able to take up my job again.

It didn’t quite work out like that. The first medication I was given was Benhexol and we went on holiday to Switzerland and really that was a very difficult time because the drug didn’t agree with me and I was having dreadful muscle spasms as well as feeling very, very weak and in fact we had to go to the doctors in Switzerland and he rang through to my doctor in England and I was told then just to stop taking that drug. And after that, because the consultant then put me on to Sinamed and Ropinarol and they’re the main drugs that I’ve had and I’ve been taking them ever since. And the dosage hasn’t gone up very much. Along the line, we added it in 2001, Chlopinamine and that’s to take at night time and that was to help with this disturbed sleep patterns and also I was having tendency to be obsessed about doing jobs perhaps at an inappropriate time. And that certainly has helped and so I’m still taking the Chlopinamine at night time and then the other addition I’d say about five years possibly, was the Amantadine because as time’s gone on, the dyskinesia has become more of a nuisance and I find the Amantadine does help so that’s my stock collection of drugs that I take. And I’ve managed with them pretty well.

A few years ago I did have a problem with a rapid heartbeat and problems with my blood pressure falling when I stood up and I was sent to hospital. My own doctor sent me for, and the conclusion of that really was that it was side effects from the tablets so again we were back to management and things come and go. For instance when I go to my yoga class, I’ve got to be careful about standing, getting up too quickly but in general I manage with them pretty well and the main thing about the Parkinson’s for me is the overwhelming fatigue. I feel as if every day I have a mountain to climb, that little things take this extra effort all the time, but I have had excellent care and wonderful resources.

For instance I’ve just finished a month doing the speech programme which has been a great help to me and I go to conductive education which is now well established in the North East and that has made a great deal of difference to me. So I can’t speak too highly of the care that is on offer and that I’ve had benefit from.

How important is the medication to you in terms of managing your Parkinson’s?

Well it’s very important because I am totally dependent on the medication. I am fortunate in that I don’t really experience suddenly going ‘off’ or bouts of freezing. I can recognise when I’m due for some tablets, I describe it as ‘I feel I’m going down the slide’ and I then would take some and would have a pretty quick reaction and start to feel more myself again. Recently I did ask if I could take an extra tablet in the evening, I started going to a singing evening class and I find at the moment I’m going from about five o’clock in the evening until the next morning without any medication and when I’m out in the evening, I do feel the need for a bit of a boost so I have that option now of increasing the tablets to four a day if I need to.

Ok, can you reflect on any experience of medication when you’re in hospital? Is there any issues there?

Well the only time that I have been in the hospital is that time when I had the rapid heartbeat and I was sent down to the casualty and I was given opportunity to take my own tablets just when I wanted. But I didn’t stay in the hospital so I can’t really say much about … that was the only time

So you were able to manage your own medication?

Yes and the medical staff were quite happy for me to do that

Ok

Yes

Excellent. Is there any other reflections, thoughts you want to contribute to this? About your Parkinson’s and medication?

I think that having the medication that suits me and taking it at the times that I have said, has meant that I, that there’s a lot of things that I can still do. I am very fortunate to have my mobility and I really prize that. And I do recognise with it, that without the tablets I can’t imagine really how I would be. I don’t think I would be able to attempt half the things that I do so again I’m very grateful for the medication I have and for the help that they give me when I go for reviews and the involvement in my own treatment. I think that that makes it easier and makes you feel still a bit in control.

Ok, well thank you. That’s brilliant. Thank you so much.

You’re welcome.