Archive for the ‘Parkinsons’ 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.

Ali Part One

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So, can you tell me about the time you have had a positive experience with your health care?
Not a problem at all. I’ll tell you right at the start, I’m a big fan of the care team that look after me at ……………… Hospital, I’m very lucky to live in the North East of England and if there’s anywhere to have PD in the UK, it’s here, in my opinion. My story starts probably July 2002 when I was signed off with clinical depression from work and for the next two and a half years or so I was off work. Towards the end of that period, I started to work part time and was getting better until round about I’d say February, March of 2005. I was almost working full time and virtually off the anti-depressant medication as well. Although I was psychologically ok, I knew physically, my body wasn’t right. I was getting very tired. I’d slowed down, I had a slight tremor in my left foot, my voice was very poor and that was key to my experience because it was very important for work purposes that my voice was alright and it wasn’t. None of the symptoms were enough in themselves to make me go to the GP but finally it got to the point where I was feeling so lousy because the combination of symptoms that I had to go and see him. And because the voice was the key issue, the most important thing he referred me for some speech therapy in hospital and that’s where my first really good experience of NHS locally, occurred. Because if it hadn’t been for, in journeyman’s terms, called joined up services, I wouldn’t have been diagnosed at all for a considerable period of time. I was speaking to a speech therapist and telling her how I was generally and it was her, not a neurologist or a GP or any other clinician, it was her, a speech therapist who said I ought to obviously check with my GP as well and as a result of that I got referred to my GP and within weeks was diagnosed with Parkinson’s. And I owe a huge debt of thanks to that lady for getting me diagnosed as early as I was and it started my experience with the local care team which has been excellent from start to finish.
And over the period of time I’ve had the good fortune to a) as I’ve said before, live in the right place; that’s luck certainly and… live in a place where it’s not lip service that’s paid to joined up services, there are very fortunately a lot of the services I require with Parkinson’s are located on the one site of ……………. Hospital and the good fortune to have access to several clinicians and therapy specialists including [a] Professor of Neurology…………… and this team of Parkinson’s Disease specialist nurses, speech therapists, who I regularly go to, occupational therapists, physiotherapists, incontinence specialists, unfortunately… and not only have they been very useful in managing my symptoms and condition but also they’ve been signposting me to other ways of coping day to day with the condition as well, better than I expect. I’ve been fortunate in the way I’ve been handled and dealt with by the people in the teams I’ve spoken to…….. Parkinson’s Disease is a very unsettling condition and makes you feel very vulnerable. And at no point in my experience with my consultation process up to diagnosis and after, have I been, ever felt less than welcomed. Never been rushed. I have regular consultations, both with my consultant and the Parkinson’s Disease nurse specialise team who share consultancy work with the consultant and clinicians. I’ve felt respected and I’ve been listened to, crucially listened to, and my view of my condition and my report on how I’m feeling has been listened to; without a doubt. And changes in treatment and medication have reflected my wishes and my information as well so not only have I been listened to but I have been, my input’s been acted upon. That’s very reassuring, very reassuring indeed. I have regular four or six monthly appointments with the consultant. If I need to I can pop in and see them or phone them to get advice or answer any questions in the meantime and that’s true of the Parkinson’s Disease nurse specialist team as well. I’ve had the opportunity to feed into my consultant’s appraisal, which is quite striking, quite unusual, I would have thought. I’ve also been a volunteer patient as well, which was a crucial
point in my symptom management, condition management because it turned the corner as far as self confidence was concerned, for me, being asked to take part in question and answer sessions with the students at the hospital. I was nervous and I felt a bit vulnerable but it was well managed to start with certainly, and there would be a doctor or a nurse specialist in the session with me and gradually, over time, I feel confident in (inaudible) myself and I’m quite happy and relaxed and enjoy it but it was certainly a turning point for me in my condition. It’s one of the unconscious benefits of the way they work at ……………that opportunity to do something like that, to get that sort of role, instead of therapy in itself, it’s not planned like that, it just works like that and a very positive motivator I think, if you were trying to be as positive as you can be with a condition like Parkinson’s.

Ali Part Two

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I’ve dealt with the most personal aspects of the care I’ve received and the way I’ve been handled by the care team, it’s been excellent. Very reassuring, but not only has my experience been, well connected in terms of the care, the clinical attention that’s been paid to me, but in terms of inclination and being kept informed, very very good indeed as well. I’ve mentioned this experience as well and again as far as patients in my condition are concerned, very important because the ignorance of the condition prior to diagnosis is extremely scary. It’s not a fatal condition but it’s extremely unpleasant and as it degenerates, which it does over time, that fear resurrects itself, depending on how serious it’d become. Information’s the key, the key to the help, I deal with that on a personal day to day level and the team at …………….. Hospital are extremely keen on keeping the patients informed, not in a way which would scare them because when you’re first diagnosed, the last thing you want is to be overloaded with information about how terrible the condition is. You need practical, simple, straightforward information which helps you to deal with it and deal with the actual fact of diagnosis itself apart from anything else. The diagnosis itself is handled extremely sensitively. My consultant didn’t mince her words, but was very supportive. Quite calm, the basic facts about the condition, asked if I wanted any further information and sent me towards information sources so I could check it myself. Which I did, and actually the web and Parkinson’s UK Charity as well. That wasn’t the be all and end all as far as information’s concerned; it’s an ongoing issue without a doubt. They took it extremely seriously at ………………. and they actually have in place a patient information strategy, and I was asked to be a member of the committee which runs that organisation and I’ve been very lucky in that my involvement there has continued. The strategy, it’s not a one-off project, it’s an ongoing initiative and there are other aspects to information there which I’ve been lucky to be involved in, one is the information prescription service. There’s attempts in terms of supplying information to patients in parallel to medical prescription. If a patient asks a question or requests some data on any aspect of their condition, that will be noted, confirmed back to them and a written confirmation of that, inverted commas, prescription put on their patient records and it will be acted upon as well. The information supplied straight away, you know it’s available immediately at the interview or its supplied by mail or in whatever manner the patient prefers and it works extremely well because the information is therefore targeted at the patient’s needs, they don’t get stuff they don’t need and at the same time it gives further reassurance that your care is being handled in a professional and appropriate personal manner. Because Parkinson’s Disease is above all a condition which is not, one case fits all in case of symptoms, everyone’s different and it’s an ongoing thing with Parkinson’s, that is the case. It’s a running joke in my family, I haven’t got Parkinson’s, I’ve got Finlayson’s, which is a chance to whinge about Parkinson’s as much as possible, which I do regularly. But it’s, it is a variable condition and it’s very good to have a team who are conscious of that and pay attention, close attention to supplying the clinical information and advice accordingly.
I’ve had opportunities to be involved in the information side of the strategy there and I’ve contributed to a jargon-buster document.

Ali Part Three

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I was mentioning that I’d been involved in several initiatives to do with the care at …………… hospital. I mentioned admission prescription project. I was a trainee, or early pilot participant in that. I’m the patient representative on the information strategy committee and I’ve contributed to the jargon-buster document that they’ve put on, put in place on site and I was very fortunate to be asked to attend the Royal Parkinson’s Congress in Glasgow last year as a delegate from the NHS as well, and that was an astonishing experience. It was a weeklong conference, there were 3000 delegates, a large number of whom were Parkinson’s sufferers and it was… awe inspiring is too small a word for it, it was very humbling to be in the presence of global experts who not only were extremely clinically committed and technically world experts but they were obviously enthusiastic about what they did and had individuals with the condition at the heart of their care and approach to their treatment. Some were a bit wordy, jargon heavy. It’s difficult and I appreciate, for an expert to communicate the finer detail in their research project without using familiar terms which we aren’t so familiar with as lay people; but there were a considerable number as well who were able to put across what they were saying, discussing motor development and treatment and medication in a very patient friendly way and that was very impressive indeed. Some of them were from the UK, quite a few were from America but in addition to that, an enormous body of expertise made available to us as delegates. The week itself was striking for me because I met a considerable number of people with Parkinson’s condition itself, and they were impressive. I met some extremely courageous people and people who not only had the condition but were looking after people who had the condition, carers, partners, wives and husbands and it was a week which I’ll not forget in a long time. An exceptional week in my respect, it will certainly be a once in a lifetime experience as far as I’m concerned and again I certainly wouldn’t have been there if it hadn’t been for the NHS.A big deal of thanks for that without a doubt.
So I’ve dealt with the three main areas which have been positive in my experience of services locally. The interaction with the expert team itself and the way I was handled on a personal level; excellent. Supply and continuing to keep me informed as a patient, again excellent; and thirdly the emphasis on joined up working, joined up services, which is, I admit, partly luck because that’s the way, that’s the way things are set up in the hospitals in the North East England and whether they are elsewhere, that would be quite possibly different.
There’ve been slight downsides and I’ll touch briefly on it now, and it’s nothing to do at all with the NHS. The three areas which I’ll mention, one is physiotherapy, one is speech and language therapy and the other is healthy living centres, and each of those areas I’ve had less than the best experience but the problem has been me, not the NHS. Not the treatment, not the diagnosis. I’m a very lazy person and if I don’t get a quick pay off for some activity or initiative of a project that I get involved in, I very quickly get bored and it applies to my condition and symptom management as well. So when I was prescribed or suggested further physiotherapy, I decided to do, I was less than conscientious in doing at home and the same was true of speech and language therapy, I was less than conscientious in doing my speech exercises which is why my voice isn’t so good at the moment. And thirdly the healthy living
experience, these are local gyms run I think by the local authority to which I was signposted following my follow-up period of physiotherapy at the hospital. And again I used very minor excuses to dissuade me from carrying on and fulfilling the initial spell of suggested lessons and exercise there. But again the issue was me, not the available therapy at all.
And just to finish off, I can pay a final tribute to the NHS locally in that in order to help me deal with the motivation issue, I’ve just referred to, I’ve just in the past two or three weeks had the fortunate experience to talk to a lady who’s involved in motivational development for people like myself and I’ve managed to restart the speech and language therapy lessons and exercises courtesy of being able to use a room at the hospital and a local resource centre as well but I wouldn’t have been able to do that, certainly I wouldn’t have bothered is a simple way to put it if it hadn’t been for the NHS again. So even in the face of my laziness or lack of conscientious application to the task, the NHS has been there and is still trying to help me out. I can’t say more than I’m huge fan. That’s all I think.
Excellent, so coming back to when you said you were at the world congress, how did talking with the experts sort of make you reflect upon your own condition?
My symptoms have been relatively mild for three or four years, they’re starting to become a little bit more distressing now and I think in the early stages of my condition, post diagnosis I wasn’t that interested in research or advances in current treatment because I was handling the condition reasonably well. Certainly I was benefitting from excellent care, as I said, locally but I think at the World Parkinson’s Congress made me realise, made me aware of the range and depth of research that’s going on worldwide and I may well in the next few years, very grateful for that taking place. And I was surprised to find how widespread that research was, many, many countries are researching the condition in a variety of ways, not just scientific and clinical research to do with gene therapy and extensional research but alternative therapies in terms of physiotherapy, artificial therapy and speech and language therapy as well, so recognising that there are other ways to approach and handle the symptoms than purely medical treatments. It was an eye opening experience, no question. There were speakers who had the condition who’s symptoms were quite extreme as well and they were, to use words like inspiring and emotional is a bit extreme but that’s, those are the words that I would use. It was an astonishing week, absolutely astonishing. I was very lucky to be in the right place at the right time to get invited to go along.
I know that you said that once you’d got your diagnosis you’d been involved in quite a few different things related to it. Can you tell me why you became involved in those different things?
The first initiative I got involved in, I already mentioned was question and answer sessions with the students at the hospital where I get my care. And the reason for doing that was twofold. One was to pay a little bit back to the service which had done so much for me. That sounds very altruistic, I don’t mean it to sound like that, it’s a fact, I owe them a big debt and I wanted to see if I could help out. And also it was a slight risk, I was taking a chance and that was I would clam up and leave, so it was an attempt to see if I had the confidence to do something like that again. Because I’m an ex-trainer, I didn’t lack confidence before my condition and it was an important step for me and one which worked. Again it was handled really well and managed excellently. I wouldn’t, left to myself, I wouldn’t just totally get on with it, there was someone there who could, ask prompt questions or divert a question which was inappropriate or difficult or I was obviously stumbling with. And the success of those question and answer sessions was so significant that I was… encouraged to get involved with Parkinson’s UK Charity as well and that led to me taking a support role in local sessions done by the education training officer for Parkinson’s UK, who takes information sessions to care home staff and social workers on a regular basis, throughout the North East
of England. And it’s an excellent presentation, very, very good and very well received but it was thought that it would be useful to have a patient with the condition contributing to the sessions as well, to give the personal take on the condition and any anecdotes and advice which I could offer from a personal point of view would be very useful and it has proved very rewarding as well. The appraisals for the sessions have been very positive for two reasons. One, certainly because the session itself is excellent, ……………, the lady involved, very, very good trainer. But they’re appreciative of my personal take as well and it’s very rewarding for me and again like the hospital sessions, it’s helped to build up my confidence. I’ve found it very difficult following initial successes in those two sort of issues, to say no, I’ve been someone who’s gone to a lot of events to do with Parkinson’s, mainly Parkinson’s UK events but because of that I’ve got to know a lot of people in the field, and that field of contacts has spread from the NHS to Parkinson’s UK and into the education sector as well, which is why I’m here today recording my story. and I find it very, very interesting, it’s all extremely interesting stuff. So I’ve got to the point where my family are quite happy it keeps me off the streets, but it’s very interesting to do that and again it helps me to pay back a little bit to the people that help me so much as well which is good. Long answer for a short question.
Coming back to the start of your story as well where you said that all the services seemed very joined up; can you just tell me a little bit more, go into a little bit more detail with regards to that?
Sure. I’d heard when going to events, mainly Parkinson’s UK charity events, that there were horror stories of people who had been diagnosed and were just shown the door by the consultant, ‘You’ve got PD, there’s nothing we can do about it really for you, keep taking tablets, come back in six months time. We’ll see you then. NEXT’. That was it, I hope I’ve made clear it wasn’t my experience, my consultant was superb. But, and here I must admit to being just lucky, geographically the services I’ve referred to, occupation therapy, speech therapy, incontinence specialists, obviously the consultants and the specialist nurses are co-located on the same site. So that’s just my good fortune and I live very close to a hospital which is run like that. but it’s quite possible, I’m sure for co-located organisations not to talk to each other, but they obviously do talk to each other as well and it was obvious in my dealings with the speech and language therapist who led to my referral, from my GP to the neurologist that she was part of an organisation which did talk to its component parts. She knew the consultants involved, she knew the mechanism for getting my referral put in place and I was very luck that that was the case. It’s not just a case of referral or information passing round the teams at the hospital. My GP as well, was kept regularly informed, every single consultation I’ve had, there’s been a GP letter sent to inform, keep me up to date on my medication. Any changes in my condition and any changes in the treatment which I would agree with the consultant and I get that copied to me as well. So not only do they supply information in a joined up fashion, inter-professionally but I’m kept informed as well. I think that’s about all I can think of to say. Is there anything else you had in mind?
Don’t think so.
There was, not really on the point but I was asked by the consultant how I felt when I was diagnosed. And as I said she handled it superbly well, and she did. I said ‘Well, I feel shocked, it’s not good news. I’m concerned, I’m apprehensive because it’s not good news but I’m also hugely relieved’; I said ‘I’m surprised at that’. She said ‘It’s a very common reaction’. And when I thought about it I realised it’s because up to that point I didn’t know what was wrong with my body and as any horror story writer or director will tell you, it’s the fear of the unknown which is the greatest fear , the greatest terror. But with the words Parkinson’s Disease, I had a badge, I could label what was wrong with me and I could start to come to terms with it and do something about it. Prior to that, I wasn’t in a good place as far as that was concerned at all and I was very, very pleased to know what I had, although it wasn’t
good news and it wasn’t cancer, it wasn’t something fatal as well. So it’s a strange sort of luck but it was certainly good luck to have Parkinson’s Disease. That’s about it. I think unless you’ve got any further questions about it?
I don’t think I do, no. It is quite interesting what you’re saying that it can be a relief…
Mmm, it was, it was, it was really strange. I felt a bit, not guilty but, it felt strange to be not happy, but relieved, relieved is the only word that comes to mind. There are other things about the care, something here which I mentioned. The consultants came to my fund raiser in 2009 Parkinson’s UK celebrated their 40th anniversary and I’d had a beard for 40 years and I’d ever been clean shaven for 40 years, so to raise a bit of funds, I thought I’ll shave my beard off. So I managed to get hold of a gents’ grooming salon in Newcastle called …………………… and they said ‘Not a problem at all. Open, cut throat razor, not a problem at all’. So I wanted it to be a Sweeney Todd type job, a proper cut throat razor affair and I set up a web page on the justgiving.com website which is for sponsorship for charities, and with a little pressure from family and friends, came the day and I’d spoken to both my consultant, the professor heading up the pathology team, ……………………….. and my own consultant ………………………… said, ‘look, I’m running this and I’d be really chuffed if you came down and put an appearance in’, and mentioned that the press were going to be there as well and I knew before I said, before I asked the question that the answer would quite probably be ‘No’, because it was quite near Christmas and the deluge of requests of after dinner speaking engagements, to go to various functions and my little fund raiser was fairly minor, low key compared to that sort of stuff. But blow me, I was sat there in the chair and they both walked in and that was at lunchtime, heading for close to Christmas and I was well impressed at that. Very senior, globally well-known clinician bothering to go along for quarter of an hour, getting a photograph taken with one of his many, many patients. So I’m very lucky in that respect, they’re great. I don’t think there’s anything else.
Was it quite successful?
I raised about £500 yeah, it wasn’t bad at all. Called it Ali’s FundRazor, R A Z O R, you know. It took quite a lot of organising, more than I thought, ‘cos I did all the organising myself but Parkinson’s UK helped out with banners and posters and stuff on the day as well. The justgiving.com website is still open, but with the paper sponsorship form donations on the website, I think it was probably in excess of £600 with gift aid as well so it was better than nothing you know, it was good. I was thinking of shaving my head this year for a change! The ……………………….. said they certainly wouldn’t have a problem with doing that. But we’ve got a regional fundraiser in Parkinson’s UK for the North of England, as part of the regional team and he’s got his own ideas as well for fundraising. I’ve said I think that’s it, several times, I think that genuinely is it, is there anything else you wanted me to go over again or?
I don’t think so.
Is there something that you can use?
Oh yes. I think you’ve covered absolutely everything.
I sort of did it, I had to before, for ………………………….. but it was slightly different, it was my story of Parkinson’s, not particularly the NHS experience but that was obviously part of it as well.
One thing, it’s not specific to the NHS but the NHS is certainly part of it. I’ve found that getting involved in initiatives to do with my condition across NHS, the education sector and Parkinson’s UK, has been exceptional therapy for me. It started when they suggested the
question and answer sessions at ………………………. but it’s been a lot more than that and I thought it’s helped the organisations which I’ve worked with. It’s been of enormous benefit to me and that’s not anything that the NHS has planned or organised, formally been involved in, it’s just been extremely good, considerable benefit for me. So I would advocate anybody who’s got a condition and is thinking of taking a step to do voluntary work or get involved in feedback or anything at all to do it. It’s extremely good therapy and I don’t think that’s recognised as widely as it should be. That’s it this time.
There’s one thing that you said when you were talking about when you went to the world congress, I know you’ve mentioned the experts, you also said that there were very impressive service users. What was it about them that made them so impressive?
Their courage, unquestionably. Actually, document this, it’s called the biggest support group meeting in the world because that’s what it looked like and felt like to be because you had expert speakers, your chance to eat and drink and your chance to talk to people with Parkinson’s and that’s just a support group meeting enlarged. Two encounters I had which were significant, I was waiting at the start of the second morning and this is at the entrance to the SCC in Glasgow. And the previous night there’d been a pipe band and 3000 delegates walking between the two venues as part of their induction ceremony. Hair raising doesn’t begin to describe it, its not something you can imagine, pipe band, I could feel the small hairs at the back of my neck stand on end, it was great. Extremely positive, extremely upbeat introduction to the whole week and the next morning, the concourse and the hall in the SSC was , virtually started at eight o’clock in the morning, with some of the early sessions being run, I wasn’t going to them but I was waiting for a friend of mine who travelled up with me to go to one of the sessions that started at nine o’clock and I was walked towards the spot where I was supposed to meet her, this other figure approached from the far end of the mall, it was like being in a huge shopping mall like Metro Centre or Eldon Square, got a bit closer and it turned out to be, a lady, well preserved, whom I would have guessed would be in her mid 40s,maybe early 50s and I don’t want to be condescending, but she looked as though she was home counties type, blue rinse maybe? And as we met, we smiled and we exchanged a little passing commentary about the fact that it was in complete contrast with the previous night, completely quiet and I didn’t talk for ten minutes, and she stopped and she just told me about her experience of her husband’s condition. He was severely demented with Alzheimer’s and he also had Parkinson’s and she just told me all about it and it was, hair raising, it was a carer’s story, warts and all and then the fact that she had the courage to tell me about it, a complete stranger, was significant in the extreme. And I didn’t forget, well I haven’t forgotten that in a long time. I didn’t even get her name and I just, we just parted on, at the end her speech, her conversation and walked on.
The next day I was similarly waiting for a friend to go to an early session and I was in the entrance hall to the SSC, the doors, they were being policed by I think it was …………………… and there were a range of very, very good, very friendly, very people people security staff manning the, direct people to venues, lifts, asking if there was anything they could do, could they direct them to particular rooms and just generally helping things to run well and they were doing a great job. This short lass, must have been two feet high, Scots accent, came over to me and said ‘Morning Sir, how are you? Can I help you?’ and I said ‘No, I’m fine I’m just waiting for a friend to go to one of the early sessions’. And we got chatting, she said ‘It’s a great event this, tremendous event. We’re working double shifts, but I’d be happy to work for no pay because I’ve met so many great folk’, and she turned away, turned back and her eyes were full of tears, I couldn’t believe it. I said ‘Have I upset you?’ I was chatting about Parkinson’s and you know, I was saying what a great job they’d been doing, she said ‘No, I’m so affected by the folk’ that she’d seen, they were in wheelchairs, people with carers looking after them and it was an exceptional event as far as she was concerned. And I gave her a hug, I didn’t know what to say you know, I sat there and apologised for upsetting her and
she said ‘No, it’s not that’, she explained and I was quite affected, as you can see I’m still affected by it as well. And I thought ‘Well Parkinson’s UK and the World Parkinson’s Congress has obviously done a major awareness job on that young lass; she’s obviously taken it to heart and is heavily involved, realised what the condition means and appreciating what it means to us if we’ve got it’. so what I did was, I went to the Parkinson’s UK registration desk and blagged a registration bag off the registration desk, I told them why, ‘Oh not a problem, not a problem’ so they gave me all the general WPC congress stuff and I then got a whole pile of stuff from the Parkinson’s UK stand (inaudible) and gave it to her the next morning. She was absolutely gobsmacked, chuffed to bits! Sorry, it still affects me thinking about her, it was great.
The other incident as well, it’s when I met …………………….. first time. I was, I done my interview with ………………………. some months before and I was staying in an hotel just across from the SCC, and I’d just dumped my plate of bacon and eggs on the table one morning at breakfast, I was a little bit unsteady on my feet because my medicine hadn’t kicked in. This little, tiny woman walked up and said ‘You’re Ali Finlayson?’, I said, ‘Yes I am’ and she said ‘I’m ……………………..’. ‘Ah’ I said, because I’d spoken to ………………… on the phone. I said ‘How did you know’ – of course I’d done the video shoot, stupid question if there ever was one. So we shared breakfast and dinner a couple of times, another friendly face, it was good. So she was attending some of the physiotherapy sessions. So it was an astonishing week, it really was and first major conference of that, well of any size that I’d been to and it was great, really, really good. Sorry to get emotional there but it was quite a week. And as I say, I wrote an account of it, it was towards the end of the week, I was on the train coming back from Glasgow and I’d asked for, is it North East Rail or, to help me on the platform when I got to the end of the journey ‘cos it was a very emotional week, very tiring week and I was knackered and I knew I’d probably be quite unsteady on my feet, so I got on the train, got help getting on the train in Glasgow, really great lad, the attendant, he was terrific. And I was promised there’d be an attendant at central station, Newcastle to help me out, and help me get to a taxi at the Newcastle end. And as the train crossed the Tyne bridge, no sign of anybody, I got a little upset so instead of trying trying to get on my feet… I managed to get on my feet, get my suitcase and I had the WPC delegate bag over my shoulder and I stood up, there was a ruck of people on the, in the doorway between the two carriages and I spotted a delegate bag, staring through, our eyes met, and she knew that I’d been to the conference because of the delegate bag, we didn’t say anything, we looked close and I got off the train and I got across the bridge at central station and in the ruck of the passengers on the far side, caught sight of the WPC bag again and this time we grinned, because we were a little bit closer, and we didn’t speak but I recognised her, ‘It was good week wasn’t it?’ written all over it, we didn’t need to exchange the words. A couple of weeks later I was at Royal Station Hotel, Newcastle, at a conference and I was in one of the side rooms, looking at an exhibition artwork produced by Parkinson’s people and as I turned round to come away from the exhibition, saw this familiar looking face but I couldn’t place it. I could see my puzzlement being mirrored on this female’s face as well then she said, ‘Parkinson’s World Congress, Glasgow, train?’, and I said, ‘Of course’; she was the next speaker on the event, she was a speech therapist specialist so it rounded off a bizarre week, but a tremendous week. Sorry again, I’m wittering on. Is this being recorded?
Yes
Oh God (laughter) I didn’t realise. That is it, that’s the last. But it’s encounters like that which are special but different as well. And other folk in wheelchairs and other stories people can give. There was a hints and tips session, one of the last sessions on the Friday and I met a guy called …………………………… and he gave me this ‘cough before you speak’ tip. The symptoms of Parkinson’s are aggravated by stress as well and he found that when he was asked a question quickly and put on the spot, especially if he couldn’t see the speaker, his,
he’d clam up, and he started to jabber or freeze frequently and whenever he experiences that now, he gives himself a little bit of spare time and the way he does that, he just gives, he just coughs slightly before he starts to speak. That’s a good point, I think it is. It’s just a little tiny, it’s a fraction of a second which it takes but it gives him just a little bit of time to gather his thoughts, briefly, and have the confidence to speak at a normal speed and start normal speech, so things like that as well.
So have you learnt any other coping strategies?
I’ve learnt to handle freezing fairly well. Do you mean generally or more specific?
Generally
When I was diagnosed my daughter, who was 26 at the time, is there anything you want us to do? Do you want us to, how do you want us to treat you now that you’ve been diagnosed with Parkinson’s, Dad? I said, just treat me exactly the way you have in the past. Unfortunately she’s done exactly that. I receive no sympathy whatsoever from my wife or family at all, I get loads of support and that’s exactly the way it should be. ‘Cos it’s extremely easy to wallow in self-pity I think. ‘Cos it brings you down, it does. And we all have our dark days and hours but the keeping busy thing I’ve referred to before is a big plus, that’s a concept as well, but having family who are less than sympathetic but more than supportive is good for me, that’s definitely a plus. And my friends are the same. Most of them run our relationships on insults and that’s great as well. My daughter and her friends were talking once, when my daughter worked in a pub in Newcastle and ………………………… her best friend, whom she’s known since she was in kindergarten virtually, worked in the same pub, she was her manager and it wasn’t known at the time, in the pub, that I had Parkinson’s but ……………………was, it came up in conversation and …………………… just happened to say ‘Oh my dad’s got Parkinson’s’. ‘Oh, has he’ bit of conversation about it and then ………………………… said, ‘hey, it’s a good disease to have for charity isn’t it?’, and ………………….. said, ‘Why is that?’, ‘Well shaking the box, shaking the collection?’ One of her colleagues said ‘You can’t say that’ and …………………………… said ‘Of course you can!’ I’m collecting anecdotes and jokes, I was putting on the list some jokes, as had been the case ‘cos humour is essential as well, absolutely critical. You can’t, you can’t try and answer in any serious way, shape or form, the question ‘Why me?’ either, the only one is, ‘Why not me’, simple as that. It’s a waste of time, ‘cos it’s an unanswerable question, it’s almost unspeakable as well, as you can tell (laughter). Support, humour, I think not making a secret of it, or not trying to hide it and that’s not everyone’s strategy, but I think I’ve found it more beneficial to be open about the fact that I’ve got PD than trying to hide it. You very often get thought of in public of being drunk if you’re staggering obviously, it’s a fairly natural assumption to make. I’ll tell you, did I mention last time I met you, the experience I had in a pub in Newcastle? I mentioned it at the global cafe event last week, and it’s to do with public attitude to disablement or Parkinson’s in particular, …………………………you know the pub in …………….I’m surprised, it’s an old guys pub, not a young guys pub, anyway, a bunch of us go there occasionally for a drink, every six weeks or something like that, quite quiet, good talk and all my mates who go over there know about the Parkinson’s, know me and we’ve been friends for a long time. Some of them are retired, others still work, all much of an age. And came closing time, and they said ‘You ok Ali?’ and I said, ‘Yes I’m going to get …………………… (that’s my wife) to pick me up’, I’ll just go to the bog, don’t wait’ so they buggered off and I went to the gents, entered the cubicle, typical is this, my feet locked. I couldn’t move my feet, I froze completely, tried to turn, nearly fell over. Stumbled against the cubicle wall, managed to steady myself, zip my fly up, flushed the toilet, I still couldn’t turn, I managed to, I looked at my right foot and with a supreme effort of will, managed to move my right foot, I managed to turn round and I was facing the door, my walking stick was still standing but it was in the corner and I’ve never felt so scared in all my life; it’s such a surprise. I was in a pelting sweat by this time, I thought it
was only a matter of seconds since it had happened, I managed to unlock the door, fortunately there was no one in the gents, it was quite quiet that night in any case and as I say it was close to closing time. I fell out of the door of the cubicle, managed to grab myself on the edge of the sink and stay standing without my stick. Luckily it was still, hadn’t fallen and I stopped, caught my breath, still leaning against the sink and knew that I was, you know I have to try get help in some way, shape or form, get my tablets and take some medicine. I thought it would be a while before I could actually take any. But what is it going to look like? I’m either going to fall into the pub or be stuck in the toilet and be discovered by the staff; I can’t possibly wait and be found in the bog. So I managed to open the first of the double doors of the toilet and said ‘’Oh bollocks’ and ran through the second door because if I hadn’t run, I’d have fallen, my feet were, as though they were tied together. Rushed out in the pub, luckily it was empty, grabbed a pillar, managed to stay upright, panting, desperate. There was a barmaid, gorgeous young lass, about the height of tuppence, she was out from behind the bar like a shot, took my arm and stopped. Didn’t say anything for a couple of minutes, ‘How are you?’ of course I’m babbling ‘I’m not pissed, I’ve got Parkinson’s’ she said, ‘It’s alright’, she calmed me down because I was panicking and I thought about it afterwards, closing time, city centre pub, a bloke staggers to the gents, I could have been mainlining crack cocaine, I could have been popping pills never mind, you know, having a few pints, so I managed to make her understand I wasn’t drunk. She stood there quite calmly, supporting me, I was leaning on her. She was incredible, absolutely incredible and she managed to get me to a seat near the front of the pub and got me a glass of cold water, I took a tablet, I calmed down a bit. She said, ‘I’m going to go and cash up, I’ll keep tabs on you. Do you want me to text your wife?’ I said, ‘I’ll text my wife myself, I’ll manage’. Five minutes later this voice ‘Hello mate, how are you?’, a young kid, looked about 14, I’d seen him chatting to one of the bar maids earlier on, turns out he was one of the bar staff on an off duty night and his girlfriend was at the bar, he’d been talking to, not the one that helped me but one of her colleagues and he said ‘How are you mate? …………………. said you weren’t too well’. I said ‘I’m ok thanks’, we got chatting about Parkinson’s, he was quite keen to find out what was wrong, so by that time my voice was a bit more normal and I’d texted my wife and so on, so he was interested and he was chatting to me. And he said ‘Well when your wife comes, I’ll give you a hand out to the car’, I said, ‘No don’t be daft, don’t be daft’. I got a text from ……………… saying she was outside, within seconds the bloke was right next to me and saying, ‘I’ll take you out’. I said, ‘No, no’ but sort of staggered when I stood up and he took me under my arm and he took me out to the car, settled me in the car, had a quick word with ………………….. helped me put my seatbelt on and I was knackered, I was really tired by this time and that was it. it was just from the comparative stability and comfort of a group of friends, close friends, humour, have a few pints, enjoying myself to complete terror and then to be helped like that was just extraordinary, it was just strange, but strange, wonderful experience to have and again very luck that …………………. happen to have two people like that working for them. Brilliant, absolutely brilliant and I wrote that up as well. I called it ‘Man walks out of a bar’. I gave them each a copy, still go in there, still laugh about it. I’m very lucky, very lucky indeed.
The creative writing has helped me as well. I started a couple of years ago, and I’ve met some extraordinary people as part of that as well. People in the writing groups and in courses I’ve been on, some exceptional people and they… and it’s extraordinary what people will reveal about themselves when they’re encouraged to do and it’s a supportive environment as well. It’s almost like a therapy group, the writing group and the pattern tends to be that you’ll set, one week, a search topic for the next weekend, a piece of writing in verse or prose, a short story maybe, whatever. Some of the anecdotes are obviously factual, biographical, documentary as well as fiction. Then there’s a few folk on both the writing course and the writing group attend, who are coping with stuff which I’d be a basket case if I had that, you know. So that’s been my experience with Parkinson’s, it’s helped me get a better balance and perspective on it, you know. It’s very easy to get down but when
you compare yourself with other folk, I realise just how lucky I am. Like I said, the North East NHS experience is superb; I’ve got fantastic friends, great family and people working in pubs who are fairly capable of walking on water as well. End of story… end of stories! (laughing)