The 24 Stories And Tips

You don’t need perfect legs: sprinting starts from the head
Sometimes I think about what my life would’ve been like if I’d been a great cyclist instead of a doctor. How would things have turned out if instead of dedicating myself life and soul to the cause of medicine and neurology, I’d won that damned race where I’d fallen over and broken my foot! How many years have gone by now? Thirty-two, to be precise. I was twenty-four, now I’m nearly fifty-seven. Up until a few months ago this was the kind of thing I talked about every Sunday morning with Georg, while sitting around and having a coffee. Just before our weekly bike ride. Getting ready for the annual Super Amateur race in Bremerhaven, the city where we live. It’s a thoroughly modern port that provides Bremen with an outlet onto the North Sea. I work as a neurologist in a big medical centre while Georg is the owner of two department stores. We got to know each other a couple of years back courtesy of our wives (who are both teachers), and we soon discovered that we had a common passion for cycling. Both of us cycled professionally in our youth, but then we met our chosen ones, set up families and, well, work did all the rest. That was the end of any serious cycling dreams. Anyway, while sitting around and drinking coffee, before we set off on the latest challenge, we would joke about the fact that our professional ambitions had never really left us. I maintain that doctors are sprinters, trying to get the most out of their legs within the hour: they have to act fast and hard. Georg reckons that a businessman is like a long distance rider, no, more a climbing specialist: it’s all about putting your head down and making your way up another incline. Never looking back. That was precisely how he went about it, and he’d often overtake me. But then I noticed, one Sunday, that Georg’s legs weren’t functioning like before. I asked him if everything was OK and he said he had the sensation that his legs seemed to “have a mind of their own”. I watched him carefully. And I told him that it wasn’t that his legs had a mind of their own, it was more a case of them becoming stiffer. “When you cycle,” I told him, “you don’t bend your legs properly and you’re not sitting in the saddle like you used to.” I thought this was the right time to get down to brass tacks. “I also think you’ve got slower,” I said. “You used to be so fast but now you let me overtake you … are you feeling sorry for me or something?” We laughed, as usual. Then Georg admitted I was right: he wasn’t as fast as he used to be. Georg had had a few problems with his back in the past - lumbago, that sort of thing – and he’d been to see a specialist who had put him through a series of exams. The usual X-rays of the spinal column didn’t show up anything. I didn’t want to let on what I was thinking so, as we pedaled away, I threw in the odd question like: do you feel you’re a bit slower all round these days? Or: on waking do you find you’re in the same position as when you went to sleep? Georg hadn’t really noticed, but his wife had said he didn’t move about as much in the bed as he used to – especially his legs. He didn’t wake her up with one of his famous kicks! Alarm bells started ringing. I was suddenly reminded of when Georg had talked about his mother (who had passed away a couple of years back): she’d been confined to her bed for quite a while, and although no specific diagnosis had been made, it was thought it might have been Parkinson’s. I suggested he saw a colleague of mine who worked as a neuro-physiologist. He was clearly frightened: “A neurologist? Why not you then?” I preferred not to be involved because Georg was a friend. Maximum objectivity was required and I risked being caught up emotionally in the whole thing. I just couldn’t seem to find the words for Georg that I used with other patients. “This guy is really good,” I told him. “Don’t worry – if you need me I’m on the same corridor.” And I winked. There was nothing stopping me from doing the diagnosis of course, it was just that for the first time, well, I didn’t trust myself. Unfortunately my suspicions were borne out. The clinical diagnosis was Parkinson’s, although further exams were carried out to exclude what we call ‘secondary causes’ like, for example, the side effects of antidepressants. We found out that Georg had suffered from depression in his youth during the military service: no surprises there because he’d always been a pacifist! After this revelation, Georg stopped coming for bike rides. He told me he needed time to think things over. Although the cure seemed to be doing him good, I was pretty sure Georg was cut up about the situation. He didn’t like the hereditary side of it all (his mother had probably had the same condition), and was very worried about what would happen in the future. I know from experience that at this stage of the disease, it doesn’t matter how well the drugs may be working. The most important thing is how the patient perceives what Parkinson’s actually implies for him personally. I knew my friend was thinking: now I’m OK, but in two years’ time? Five? Ten? And what if I end up in a wheelchair? As a doctor, and as a friend of course, there was no way I was going to allow him to give up. I phoned him up and spoke through clenched teeth. Georg confided: “It’s become hard to imagine even an hour of tranquility, peace or freedom.” I was dumbstruck. I understood I shouldn’t have been in such a hurry. Georg had to get there on his own, he had to conquer time anew, make it his own again, because that was what this was all about: it was the final sprint, and everything depended on his own way of dealing with it. His legs were still working OK. At that time I still didn’t know, but this morning – a cold, sunny morning – I found Georg standing in front of the café, wearing his customary red thermal jacket, complete with bike and rider’s helmet. The sea looked great. “I know I don’t have to take part in a race,” he said “but I can train with you, right?” Advice: invite your patients to not bully time around or, in other words, not to put the cart in front of the horse. They shouldn’t get over-obsessed with tomorrow, but immerse themselves in a lovely hot bath of ‘here and now’.
Sleep is a mirror of life. A healthy life
We doctors come into contact with different types of suffering all the time. There’s physical suffering which, intense as it may be, is the most obvious and easily recognizable; but there’s also moral suffering that takes its cue from another disease or pain, mourning, maltreatment, psychological suffering. These are the most difficult forms of suffering for me because, in a certain way, they ‘consume’ me. We see many of these types of suffering every day. Doing this type of work, your perception of life changes. Slowly, but it does. When I get home in the evening I realize that disease and suffering are outweighed by health, I feel I’m a lucky woman. I live in a big city in the north, I’m forty-two, I’ve got a husband and two little children and I used to have a dog. When he died last January it was a real loss. He’d been our companion for over fourteen years! I work as a neurologist in a hospital. At the beginning I worked with epilepsy and I used to love the EEG as a method of investigation into brain functions. I’ve always been fascinated by the brain’s potential – the functions and capacities of our central nervous system really are incredible. Then I dedicated my studies to EEG alternative applications, concentrating particularly on comas and sleep, two disorders that to this very day take up most of my working time. This is why among my patients there are often ‘Parkinsonians’ or people affected by aspects of Parkinson’s. And sleep is, in fact, one of the things most affected by Parkinson’s: patients don’t sleep well, they talk about the ‘restless leg syndrome’ (or the need to move their legs continually in bed so as to alleviate a sense of pain, tingling or annoyance), and they also speak of sleep apnea, when breathing is interrupted or slowed down while sleeping, thus ruining their good night’s rest. I also work on the so-called ‘REM behavioral disorder phase’ which actually provokes movement during sleep: in other words you end up actually doing what you’re dreaming about during sleep – you move your legs, your arms, you speak, get out of bed or start shouting. Some studies have suggested that these kinds of symptoms can sometimes actually precede the onset of Parkinson’s. People with Parkinson's are particularly subject to movement-related disorders and reduced autonomy, but sleep-related disorders should not be underestimated either. Such disorders can be very serious, leading to daytime drowsiness that can modify and worsen one’s style of life. Working on sleep is fascinating. During the day I do the medical reports, starting from the polysomnograms and the EEGs, and I visit my patients. I work nights occasionally too: we register sleeping modes in protected environments so as to obtain polysomnographic patterns. I’m in charge of a team made up of two younger physicians and five neuro-physiopathology technicians, and I obviously have to give account to the head physician. We may also get a few young practitioners coming along as well, doing their theses or something. My job has changed my way of thinking about time. I’ve just gone back after maternity leave, so I’ve got a reduced schedule, although generally I start at seven-thirty and finish at six. I had a very intense working schedule for a while, and it left me with no time at all outside of work. Not now. I love my work and I dedicate everything I’ve got to it, but what I do outside of hospital is absolutely fundamental. If I were to lose quality time with my children as they’re growing up, I would be unable to forgive myself. Playing with them is just so rewarding. As is just sitting down and having a chat with my husband, or going out together (when possible!), or with a girlfriend. I’m an ex-pianist and I love music. It helps me to relax, and to concentrate as well, when necessary. I’m also a keen reader and I love all kinds of art. I do yoga when I can. So as you can see, I need to be able to find time for myself, and I don’t like it when things get too ‘crowded’: if I could have an extra hour a day – a daily slot to fill in – I’d decide what to do with it on the spur of the moment. The idea in itself is oxygen for my lungs! I might even decide to do nothing! Of course, work remains a passion. My particular job forces me to come to grips with all manner of different stories. They are transversal pathologies in the sense that although there may be enormous differences, there are many points of contact. Like that little girl who tried not to go out so as to avoid an attack of cataplexy (a kind of severe muscle weakness) whenever she used to laugh with friends. Or that headmaster who was ‘re-born’ after a cycle of therapy for sleep apnea – no surprises there, as he used to fall asleep during lessons, and had become the laughing stock of the school! And then I think about all those parents of children affected by serious cranial-facial pathologies, and the children themselves who we see every day and who are such examples of courage to us all. Suffering children and animals are just so completely disarming. Patients must feel they have a voice. That’s why it’s important to speak about Parkinson’s, even if the media tend to attach greater importance to the more ‘spectacular’ aspects of the disease, the more in-your-face kind of images. But there again, maybe it’s understandable: more awareness is needed. We doctors should instill courage in others. I seek to help my patients with messages that are loud and clear, and that help them to understand. Empathy is essential. So, too, is a certain deep-rooted serenity. Advice: always look for authenticity and deep motivation in everything you do. This helps foster awareness of what you do at home and at work, allowing you to live things – good and bad – to the full, precisely because that is what you chose.
Searching for the giant lizards
My father had already retired by the time he was diagnosed with Parkinson’s. Later it was discovered that it had started a long time before. I think he’s 75 now. I say ‘think’ because he’s always been a bit mysterious about his age. He was born in Malaga but his parents escaped to Lausanne in Switzerland. At that time there was the war, and the records office had been bombed. It sounds like something straight out of a novel, I know, but that was my father for you. It’s hardly a coincidence that he taught history and literature in secondary schools throughout his life. My mother suddenly died of a stroke three years ago and I went back to living with my father. At the time I was living in Spain, a country we’d always retained close links with since I was small. My father still thinks of himself as a man from the south of Spain. So do I, if the truth were told. But I’m an advertising director and so I had to live where the action was – in Madrid. Malaga is wonderful, but it’s a bit provincial. I was actually filming an ad when my dad called to say Pepita had passed away. Pepita was the name he gave my mum. Her name was Pilar and she’d acted in the theatre when she was young. Dad said she looked like Lauren Bacall. She was really beautiful. I flew to Lausanne to find my father in a kind of catatonic state. I noticed that he had a strange way of sitting: looking at him made me think of one of those cartoon tortoises. It was as if he had an enormous but invisible shell on his back and shoulders, weighing him down, and he couldn’t quite work up the effort to get his head out. It wasn’t exactly as if he was hunchbacked. It was different to that. When I got back home I found him sitting at the kitchen table, and I thought that my impression was due to his position; but when I got up I saw that that was not actually it. He was actually withdrawing into himself, closing himself like a book. And the kitchen stank of garlic. That was strange because my father hadn’t touched food for days. It took me a while to work out that it was the smell of sweat. A month later I took him to the doctor, a friend of his, because he wasn’t getting any sleep. He’d always been something of an insomniac, but lately he’d been staying awake all night. The doctor asked me if dad had told me about their recent meetings. For the last six months he’d been urging dad to go and see a neurologist. On getting back home we quarrelled, and he said mum would’ve been against the idea as well. “Why? In what sense ‘against’ the idea?” I quizzed him. “Against seeing a neurologist. All they want to do is open your head up.” I told him that I didn’t believe what he was saying. Mum had her head well and truly screwed on (that’s why she abandoned the stage to marry a teacher), and there was no way she would’ve been against him seeing a specialist. A few months later and the diagnosis was … Parkinson’s. No-one in our family had ever been diagnosed with it, and dad didn’t want to know. The neurologist handed the case over to a younger colleague who was just out of university. Or so it seemed. She was minute, and had an interesting face. She said dad’s posture was called ‘camptocormica’, and that it consisted of a loss of muscle tone that led to a forward-flexing posture and even contraction of the rib cage. “Let’s just say that you need to straighten up a bit and relax, okay?” the young specialist said to my father. She smiled and so did dad. I liked her smile. The physiotherapy sessions helped dad to straighten up, although perhaps it would be more accurate to say that he ‘opened up’ again. The doctor followed his medications carefully, but he wasn’t keen on the pills and stuff. He couldn’t stand the side effects. Dad had always been fond of cycling, and he confessed that he hadn’t been feeling up to it for the last couple of years. Now, every now and again, we go for a ride along the lake. Nothing too demanding. Almost every week he goes to the reptile house in Lausanne, one of the most important in Europe. Reptiles are a passion of his. I remember him being interested in snakes and lizards ever since I was a kid. In Spain, during the summer, he’d take me to the countryside to look at the green lizards lounging around in the blisteringly hot August sunshine. He used to say they were the only survivors of another era, and that to survive they had had a strategy: they got smaller. Millions of years ago they were huge brontosauruses but now they hid themselves away in rocks no bigger than a pair of boots. One day we’d end up like that too, he said. We’d become smaller and smaller and then we’d squeeze our way into cracks in the dry stone walls and only then – at last! – we’d give the planet the respect it deserves. We wouldn’t trouble anyone any more. He’d become hooked when he was a boy after seeing an American film called Jacare, an adventure story about an expedition to the Amazon in search of giant lizards. A few weeks ago he said he’d like to go there before dying. I told him that first, he wasn’t going to die soon, and second, the Amazon was kind of a difficult place to go to! “Not the Amazon!” he replied. “San Paolo – there’s the biggest reptile house in South America. It’s called the Butantan Institute.” “I’m not sure you can travel to Brazil, dad,” I replied. “Talk to the doctor, Luise,” he said, winking a knowing eye. “Maybe she’d like to come with us. I’ve noticed that you call her even when it’s not absolutely necessary …” Well, dad might have lost quite a few things over the past few years, but his power of observation had remained intact. Given his overall state of health, Luise said it would be OK for him to take the journey, but it would have to be planned right down to the last detail. There was no place for surprises. I asked Luise if this type of fixation (the journey) was perhaps due to Parkinson’s disease, a possible side effect of the Levodopa. She said it was a complicated story. Maybe I would like to talk about it over dinner … In the meantime, dad’s got it into his head that the journey will take place. When he’s not in the reptile house, he’s in the geography faculty library reading whatever’s available on Brazil. Now he knows practically all there is to know – San Paolo is packed with first class clinics and doctors and if I don’t take him there he’ll go on a package tour without me! He’s already been to a travel agency for a quote. He says he’s been a ‘good boy’ and has done what was asked of him, but now it’s time for his reward: what good is all this discipline if he hasn’t earned the time to take a nice long flight to San Paolo? Luise agrees with him. It seems she’ll be coming too. Advice: facing up to a cure as if it was a challenge can be useful. Always drum up new objectives to share. Transform obstacles into free time activities.
Never give in: the match can be won in the last minute too
My father? A rock. I could depend on him for anything. I called him every day, asked him for advice on everything. When PD showed its ugly mug, our relationship changed. Instead of other people being able to depend on him, it was the other way round. Not just physically, but emotionally and economically, too. He’s sixty-five now, and ever since he stopped working, my parents’ income has dried up dramatically. They’ve had to cut down on everything and they’ve started using their life savings because their pensions aren’t enough for both of them to get by on. I avoid sharing my own concerns and problems with him, not just because I want to save him further worries, but because his opinions wouldn’t make any difference now. He’s no longer able to understand the questions. It’s as if he’s inhabiting a different universe. He used to be so active:, playing sport, travelling, going out and seeing friends. Now he spends most of his time sitting in front of the box. He’s always dreamed about having grandchildren who he could’ve played football or gone to the seaside with for the weekend. I’ve got three children now, but none of this happens. He enjoys having them around, but they never do things together. He’s just an observer. Most people tend to think PD is about trembling, but it’s much more than that. Parkinson’s can cause depression and lead to indifference as to what’s going on around you. That’s equally serious. My father’s a lawyer and had an important law firm here in Nottingham. He sold out his half to his partner. The illness affected his movements, especially down his right side, and he was no longer able to do the simplest of things, like carrying a plate or a glass of Coke. He had to get a car with automatic gear change. Even his way of reasoning – his brain – had slowed down. His great love was football. He almost became a professional as a kid, and he continued to play with friends at weekends. Before the diagnosis, eight years ago, he was operated on his knee and stopped playing. He’s convinced that Parkinson’s was to blame for his having to hang up his boots. He takes pills to control his body movements, and he’s also followed by a psychiatrist and does therapy with a psychologist. He doesn’t know I’m separating from my husband. Once upon a time, he would’ve been the first to know. It’s the kind of thing I’d have told him about even before my mum. This last year has been difficult for us. Notwithstanding the problems, my husband hasn’t disappeared completely; but he’s a train driver and has a strict timetable to observe, so it’s unrealistic to think I can count on him. Three young children who go to school, do swimming, go to dance classes and go to their friends’ house to do their homework; the eldest is following in his grandfather’s footsteps, playing for a junior football team, and it seems he’s quite gifted. Loads of things to do, and that’s not counting my own full-time job: I work as a graphics editor for a gardening magazine, and I’d like to go part time, so as to have more quality time for myself and the family. But this isn’t the right time to be asking for something like that. Time is what there is just too little of. And when you don’t have any at all, you just have to invent it somehow. The father of one of my son’s teammates has invited me out for a drink on a couple of occasions. I didn’t want to say no, because he’s nice – his name’s Jim – and it’s relaxing being able to chat with him for a few minutes during the matches. On Saturday there’s an away match in Birmingham, and we’ve decided Tommy will go on his own. It’s the first time, and I’m a little bit uncomfortable with it. The problem is that my mother’s gone to stay with her sister in Oxford for a couple of weeks and dad can’t stay on his own all day. My aunt’s alone and she’s convalescing after a serious operation, and mum couldn’t really say no. She asked if I could handle the situation on my own, and obviously I said yes. My father could’ve gone to my aunt’s with her if he’d wanted, but he said he preferred to stay at home. He ‘didn’t want to be in the way’, he said. But the truth is he doesn’t want to stay in someone else’s house overnight. So there you are, for the last week I’ve been popping round to see if dad’s OK straight after work. I check the pills, prepare his dinner and then it’s off back home to the kids. They’ve been very good, and they often prepare themselves a salmon or tuna sandwich. The other afternoon I found dad cutting a rose in the garden. My parents have got this beautiful rose garden with these enormous pink crimson roses, and they’re blooming right now. They’re mum’s pride and joy. She paints them in these beautiful little sketch pads. Magical. “If mum sees you with those scissors in your hand, you’ll be for it!” I said. “And what’s the use of me being here on my own, all alone and suffering?” he replied, turning round, all rigid, and entering the kitchen. He put the rose in a vase. At that moment I felt the need to tell him what was happening in my life, that my husband was looking for another house and that I wanted to go out for a drink with a man called Jim. Once upon a time, I would’ve asked him what I should do. But I kept quiet. He was staring at the rose. I asked him if he’d taken his medicine and he nodded, smiling. Then he asked me if everything was OK. I said yes. Automatically. As always. Then he asked me about Tommy and the team. “Isn’t there supposed to be a tournament or something in Birmingham at the moment?” I told him that he was supposed to play on Saturday, but that I wouldn’t be able to go so he would be on his own, together with a teammate and his dad. Dad sat down and I started massaging his shoulders, which are always so rigid and knotty. “What’s the name of this teammate’s dad?” he asked. “Jim. Why do you ask?” He nodded while I continued the massage. “I’d like to see Tommy play,” he continued. I’d started sobbing, and he noticed. “Why don’t we go together?" I asked him. "It’s only half a day, no more. Dad, I need you.” “You want my blessing?” he smiled. I stopped massaging him and I started laughing. And he said: “Do you reckon I’d be able to make it? And you wouldn’t mind?” “Of course not!” I replied. “Tommy asked me... - and here I lied - It’s a big match and he’d love you to see him play. You haven’t seen him on the pitch for ages. He wants to know if he should continue at the same pace, if it’s worth it, or if it’s better to drop things. He wants the opinion of a lawyer!” Dad nodded and said: “Very well then. I think I should come.” Advice: PD often affects the psyche as much as the body, but it’s not so obvious. The symptoms – depression – shouldn’t be underestimated. For the sake of our loved ones, always be on guard.
It’s never too late to start dreaming again
The two great loves of my life have been chemistry and crime novels. When I was young I thought I’d become a writer but then, luckily, I met my future wife, Teresa: she insisted I finish university and forget about literature. We were young, she was beautiful – and she still is, fifty years on down the line. I studied during the day and wrote at night. Teresa read one of my stories then came to see me at an exam. Her verdict? Hurry up and get your degree! And that was what I did. I’ve always trusted her instinctively, and that’s surely a sign of love. And seven years ago, it was the same thing. One morning she said: “Max, I think I’ve got Parkinson’s.” Maybe someone else would’ve replied: “Now come on, what on earth makes you think that?” But because it was Teresa, I believed her. And she was right. Some time later she remembered that one of her aunts, her mother’s elder sister, had suffered from Parkinson’s as well. But then she died in a car accident. Well, anyway, seven years ago I was still in the firm where I’d spent most of my working life studying and inventing glues. Yes, glues: adhesives, mastics, sellotape. Anything that could help put back together what had been broken. Teresa had always called me ‘Mr Fixit’. And when a neurologist handed over the diagnosis three months later, in black and white, Teresa said: “Now you’ll have to put me back together.” But that morning I didn’t believe her, for the first time in my life. She stared the neurologist in the face, and I could feel the ground giving way under my feet. Teresa had always looked after me – how was I ever going to look after her? I’m seventy two and my name’s Max. We’ve got two grown up children, Helena and Magnus. Helena’s got two wonderful children; Magnus has got two hunting dogs, even if he hates hunting and is a vegetarian. Magnus reacted to the news like me: he went haywire. Helena, on the other hand, resembled her mum: “We’ll have to change a few things,” she said simply. “Time for a re-set.” One evening, a few days later, I asked Teresa how she had known she had Parkinson’s and she told me she didn’t recognize herself in the mirror any more. Then she added: “I wonder you never realised what was happening. Didn’t you see my face had become a photograph?” I didn’t understand what she meant. “It’s static,” she said. “My face has changed, it’s become rigid. I’ve lost expression, I’ve lost my expressions. I’m not me, I’m a wax mask. Didn’t you notice? Well, how could you? You’re too busy with your crime stories, and you wouldn’t notice even if your neighbour had been assassinated!” I hadn’t noticed. For me Teresa hadn’t changed over the last fifty years, ever since we’d met in chemistry class. She’d left that subject to become an agronomist. She knew that she was going to inherit land in the Hallertau, in Bavaria, where (I discovered later) she intended re-activating the hop plantation her grandparents had set up years earlier. And that’s exactly what she did. “Fair enough,” I replied. “But how did you know that the facial rigidity was due to Parkinson’s?” “I read it on the net,” she said. “I didn’t know you used the net,” I replied. She looked at me in wonderment. “What are adolescent grandchildren for, Max?” she asked. From that time on I’ve read less and I’ve taken more care of Teresa. Six months later I was given early retirement, and I don’t regret it. I invented lots of new glues – for wood, plastic, ceramics, rubber, water resistant, heat resistant, cold resistant – but I never really liked my job that much. True, experimental chemistry does have something in common with crime novels: in both cases you’re investigating on the basis of hypotheses, but Mike Hammer is more thrilling! Now I had to dedicate myself to Teresa. The rigidity not only affected her face: to tell you the truth, she had difficulty doing a lot of things she used to do without thinking. The drugs did their job, but there were also unpredictable side effects which, sometimes, worsened the situation. Two years later and it was no longer possible for me to be away from her. I’m always by her side. I take her shopping, we go together to the homeopathic doctor (she prefers him to the conventional doctor), I accompany her to the neurologist dealing with her case, I accompany her to the Association we belong to, where she does gymnastics. I do plenty of things you see … I sometimes brush her teeth, lace up her shoes (even if most of her shoes are now laceless). Just lately she’s got it into her head that she wants to go and live in the country and follow the hop plantation from close range. She says she’s fed up with Abensberg, and that she’s always been a countrywoman at heart. I have to say that when we’re in the country she does seem to feel better. She can’t walk very far, but the courtyard is pretty big, and there’s loads of animals. Teresa loves geese. And dogs. And cats. Magnus wasn’t keen, and neither was I. Helena said she agreed with her mum, and the grandchildren welcomed the idea with open arms. As did the hunting dogs. Result: we went to live in the country, where Teresa had spent so many happy summers as a child. The hops from that area are among the world’s best. Teresa adores the plant and its flowers – she knows its every secret. Unsurprisingly, she says, it’s in the shape of a heart. Teresa feels better in the country. Not that her ailments are any the better: in the morning she needs time to get going, she needs to do exercises to straighten up a bit because she tends to bend over too much; and she does facial exercises too, to help her with hyper-salivation (there are drugs for this as well); but more than anything it’s the country air that wears her out. In the evening she’s whacked, and she drops off more quickly. Going to bed earlier means her sleeping has improved. And I have the time to write my crime novel. At last. I write for an hour every day, from eleven through to midnight. Sometimes I begin a bit earlier or later. I’ve always dreamt about being able to do this. It’s not that I expect anything to come of it. I only do it for fun. Advice: don’t neglect any aspect of Parkinson’s and learn everything there is to know about what the person you’re looking after needs. By anticipating his or her needs you will make time for yourself and avoid stress.
Instead of thinking about the future, build it
Funny how things change. Before the Parkie Curse (as I call it) came along and set up shop in my street, a week like this one would’ve seen me battening down the hatches. Domestic duties, the kids’ school, a meeting at our local radio station in Wiltshire to see if a public area can be found to sort out the home-help nursing problem for neurologically challenged patients and – the icing on the cake – a meeting with my youngest child’s psychologist. We’ve waited two years to convince her that it was necessary! Anyone want to take my place? But I won’t be battening down any hatches, no. Quite simply, a week like this is a part of my life – a life that is full and makes me feel alive. Well, I’m fifty-two, with two daughters to bring up and a husband who I enjoy going out with for a meal or a drink – exactly what we’d like to do this Saturday seeing as the kids are on a sleepover for once! Then there are the stocks of carrots for Benjamin Bunny (if you know anything about children’s books you will no doubt have picked up on the reference to Beatrix Potter), our pet rabbit, the fifth member of the family, and probably the only one who doesn’t make a fuss about his food! I mean the truth, as such, is a slippery object; things have to be seen from different points of view, they have to be elaborated upon, and the consequences have to be faced up to with patience. One thing at a time. Six years ago, two days before my 47th birthday, I was diagnosed as having Parkinson’s, and I felt relieved. No-one believed I was relieved, but I was. My husband’s reaction was one of despair – he felt it was a tragedy and a harbinger of worse things to come. He started thinking about the future: how would we manage? And he was partly right. Working as a financial analyst, I was the main breadwinner in the family. How would we finish paying off the mortgage? Our daughters were so young, and everything had changed so suddenly. It’s fate, I guess. My family has always had to co-exist with disruption, change, and adventure. I was born in Kuala Lumpur, in Malaysia, because my father had been stationed there during the war in Borneo. When my parents had left England, they had two daughters; when they came back, I was there too – there were three of us! Mum is still alive, but dad died suddenly twelve years ago. He never saw our little one, and I think that’s sad, but I’m also consoled by the fact he didn’t see me with Parkinson’s. He would’ve been devastated. So that’s a relief. Six years ago, however, I was relieved big time for another main reason: at last I’d understood what was up with me, after four years of trying to convince my family doctor to take me seriously. He thought I was a hypochondriac, can you believe that? My right hand trembled and it was hard for me to walk and sleep. Getting around was proving difficult: at times I couldn’t get up from my chair, my shoulders were blocked. And my handwriting … got smaller and smaller, it all kind of shriveled up, whereas once it had been big and easy to read. Thinking about it again, other things come to mind – other less evident symptoms, more silent, which went back to when I had only just turned twenty. Well, one day I sat down in his clinic office and refused to leave. He wrote a note saying I definitely didn’t have Parkinson’s! I was shocked. A specialist in neurology then made the diagnosis, and I went back to my doctor’s. Before telling him where he could get off, I let him have more than a penny’s worth of my thoughts. Anyway, I was relieved because at first I thought I had some sort of serious neurological disease that was going to take me to the grave in a matter of months. Now instead, I had someone who was willing to listen to me and prescribe me drugs which, almost immediately, made me feel better physically and mentally. I’ve changed therapist a number of times over the years. I’ve had the present one since the beginning of last January. My main problem has always been dystonia, or the painful contraction of my muscles, especially on the left side of my body, in my foot and leg. When the crisis comes, there’s nothing you can do: I just have to lie down on one side, or even on the floor. If I’m outside it’s a real problem: I don’t know what to do, but I can’t pretend it isn’t happening either. I’m frightened of losing control of myself, of going all rigid and not being able to take my medicine. It almost happened on a couple of occasions, so I try not to leave the house on my own. Crowded places can spark off an attack. Things have been better since I started a new therapy. I feel like I’m living again. This is a real problem anyway – the idea that you can lose your independence. The illness has meant I’ve lost a lot of time with my daughters. With my eldest, now adolescent, it’s difficult to do things like going shopping or taking her to a concert or something. With the youngest I haven’t been able to help her much at school, also because she’s got her own mountains to climb, what with memory loss and autism. If I had an extra hour I’d be able to do all these things for my children, much more than I can do now. I’m also studying French and a bit of dressmaking, and I keep fit with a rowing machine. I represent people with Parkinson’s in the county clinic commission: the project’s aim is to help raise institutional awareness of the myriad problems and shortcomings associated with distance. That’s why I’m trying to get this radio appointment set up. Unfortunately, this week is like so many others: I don’t have the time! Time has another meaning for me now. I try not to think too much about the future, otherwise I get depressed, especially when I think about getting old. I’m also very concerned about my youngest daughter. We’re trying to sort something out for her so she’ll be less vulnerable in the future. That’s my number one project at the moment – to save enough money so as she can be educated at a special school. That way she’ll be able to make a life for herself and be independent – Lord knows I understand what that means. We’re almost there: another six thousand pounds and we’ll be able to breathe a sigh of relief. Advice: make sure you get a good night’s sleep. I often go to bed before ten in the evening (earlier than my children!), otherwise there’s a real risk that the day after will be difficult. Have a good rest and build up your strength!
How Robespierre revolutionized my life
When Michel saw him for the first time, Roby wasn’t even called Roby. He was Robespierre, number 49 in the municipal kennels of a small town in the south of France. Crowded with tourists in the summer, the town has a pleasantly melancholy air about it during winter. Roby had a black patch around his eye and a very long tail, but it was his delicate-looking white snout that convinced Michel that here was a ‘Roby’ rather than a ‘Robespierre’. He’d been thinking about getting a dog for a while, didn’t know why. Maybe it was a question of feeling less selfish. He was divorced, with a son at the local grammar school, but lately he’d been feeling lonely. Michel experienced the first symptoms of Parkinson’s six months later when he had a hard time keeping up with Roby. Walking suddenly became really exhausting and he felt as if he was dragging a dead weight behind him. Michel lives up the top of a road that branches off from the main coast road. It’s an isolated spot, but you get a great view of the whole Toulon Roadstead. A beautiful place. During their treks Michel and Roby walked down the hill to a tiny harbor which used to be inhabited by sea urchin fishermen. The diagnosis arrived about a year after Michel had first gone to collect Roby and taken him home. An engineer by trade, he wasn’t yet fifty. At the beginning he made a fight of it, but then gave in. Life no longer seemed to be of interest. And that included Roby. The dog had been used to going for regular walks, morning and afternoon, and at the weekend double portions! But not anymore. The only walks he got now were around the small, gravelly garden surrounding the house, almost always covered in pine needles. Occasionally he would get a run around with the children of Michel’s sister, if she happened to pop round. They threw him a stick or a ball, then they played something else. Michel didn’t seem to have any physical impediment as such. Other things occurred, like not being able to recognize certain smells – although this had been happening for quite a time before being diagnosed with Parkinson’s. The neurologist explained that this dysfunction was linked to Parkinson’s and went under the name of parosmia. In his case it was probably one of the first symptoms of the disease to become manifest, way before the stiffness and chronic tiredness. You can smell things that don’t exist – ghost smells – or you mistake one smell for another. Michel was obsessed with smell. He said that everything seemed to have a nasty smell. Flowers didn’t smell like flowers, fruit no longer smelt of fruit, and even Roby started to have an unpleasant pong about him. The neurologist prescribed some medicine, but it didn’t do much good. Michel was also worried about work. He didn’t feel like working anymore, and he thought his small building company might go belly up. The neurologist sent him to a psychiatrist who told him he was depressed and sorted him out a drug therapy. He felt a bit better. But everything had become so tiring, physically and mentally. So he decided to give Roby away: first, his sister took him on because the two kids were quite fond of him. Her husband less so. They lived in a flat. Once Roby was offstage Michel entrusted a lot of his work to a young architect employee of his, and he left the house much less often. His eighteen-year-old son didn’t show up a lot, so he decided to start an e-mail correspondence. Michel sat in front of the PC all day long and, for some strange reason, he started talking about all the things he’d never got round to talking to him about before face to face. He discovered that his son replied from his smartphone – that was why he replied so quickly and in a hurry. Michel bought a smartphone too, and they used social networks. After a while, the conversations became more to the point and erratic. One day he found out from his son that Roby had been returned to the kennels. His sister hadn’t been able to cope, probably because of her husband, and they hadn’t had the courage to tell him. That same day Michel and his son had a massive argument on the network: seeing his son’s words illuminated on screen had really shocked him, and Michel felt as if he’d reached rock bottom. Perhaps he’d always been inadequate? His behavior had nothing to do with Parkinson’s. He understood that if he wanted to haul himself back into the arena he would have to start from something small. One step at a time. So he decided to ask for help from the only being who had never asked him for anything: Roby. He asked his young architect employee to accompany him, and discovered to his delight that he could still drive with no difficulty. “Robespierre’s hurt,” they told him at the kennel. “What happened?” “He’s broken his left front paw. But he’s on the mend. He’s in rehab at the moment.” “I want him back.” “We have to tell you that if Robespierre is going to make a full recovery he needs exercise. You haven’t been very reassuring on that front.” “He’s my dog! What kind of exercise?” “He needs to run. Fast too. If he were a horse I’d say he’d needs to trot.” “Every day?” “Yes. At least an hour a day. Can you guarantee that?” Michel glanced at the young architect seated beside him, and said: “Of course.” “We’ll be coming along to check. This is your last chance.” And so, keeping pace with Roby, Michel slowly re-conquered the road. An hour every day. During their walks Roby sometimes disappears from sight for a few seconds, but when Michel gets to the end of the bend in the road, the dog is always there waiting for him. Advice: work on your self-belief. Don’t lose it. Challenge yourself daily, give yourself a little hill to climb and give in to the odd new wish. Don’t create limits for yourself.
Going back upstream and never stopping
Now don’t go imagining a fisherman sitting on a camping stool, floppy hat on his head, and a still lake before him. A man whose only concern is the tweaking of the rod, because that means he’s hooked the big one. No, that’s definitely not me. Fishing means adventure as far as I’m concerned. I’m not talking Indiana Jones or anything but, rather, the sheer pleasure of discovery, the enthusiasm to go and seek out spots of unspoilt beauty, and maybe go back to long-forgotten places. I don’t go on my own, mind: my brother’s always with me. It’s safer that way. I’m sixty-three, and I’ve had old Parkinson’s with me for a few years now. It’s been a bit of a pain, but he’s manageable. It all started off with my not being able to close an eyelid. Weird. After getting over that little problem, there were a number of other minor disorders and I didn’t suffer that much. There was no desperation or scenes of panic. The disease took its toll very gradually, until at the beginning of 2012 I underwent the operation to put in the deep brain stimulation device, or DBS as it’s known in the trade. From that moment on, things went swimmingly, so much so that I started underestimating the problem. Now that I’ve fully understood the relentless nature of Parkinson’s, I’m fighting it with physiotherapy and gymnastics. And in fact, the most annoying aspects of the disease today are related to my getting around, my posture and the general sense of tiredness. Other symptoms like trembling or loss of balance are almost non-existent, and I only seize up during the day on very rare occasions. I’m not the first in my family to get the disease: my mum was diagnosed with it at the age of 80, and she died fifteen years later. I come from Cogne, a small mountain village in the Aosta Valley, and I’m the tenth of eleven children. My roots are in Cogne, and when I go back, I sleep in the same bed I used to sleep in when I was born. Since 1974 I’ve been living in Milan and I’m happily married, with four children! I’m in charge of a small publishing house, but I’m about to retire. At last I’ll have more time for fishing. Fishing is a family passion. When I was a kid, my brothers and I used to go on fishing trips around our area. There were loads of valleys, streams and everything, we were spoilt for choice really. Then, what with work, my family and the four children, well, it’s not exactly easy, is it? But I tried to make sure I didn’t lose the habit, and now that the kids are grown up I try to dedicate at least one day a week to my hobby. My brother and I take the car and off we go! I do spinning with artificial bait, and my favourite fish to catch is the trout. Ever since I was a kid I used to fish in the mountains, going upstream with the torrents and rivers, so it is only natural that this kind of fishing was chosen. You have to overcome the difficulties of the terrain, making your way through cascades of water, climbing and helping yourself along with branches and trees, trying not to end up in the thorn bushes! My brother and I share everything in those moments – the disappointments of seeing a trout get away or the joy of capturing one. And there’s something else really nice about those places: the solitude. More often than not it’s just the two of us, we don’t meet anyone. Maybe you come across the remains of an abandoned peasant civilization: terraces, windmills, canals, paths and ruins buried among the vegetation. Our destinations of choice are the Aosta Valley – where we really do feel at home, and although we might think we know it inside out there’s always something new to discover, incredible really – and Liguria, a fantastic mountainous region packed with little valleys running down to the sea. Italy really does feature some extraordinary places. Often they are unknown, far away from towns and the more well-known natural spots. And only through the passion for discovery can you hope to find the forgotten jewels of this peninsula. I can’t hope to describe how I feel – how we feel – at those moments. Casting your line out and capturing a trout, and finding yourself immersed in all that beautiful wilderness where, from behind a rock at the end of a path you might find yourself confronted with a sudden waterfall or rock pool, ah, it’s such a pleasure! Today I still manage to fish for six or seven hours at a time, though I might pay for it the day after. But for me fishing isn’t just a physical activity that helps get me up and moving; no, more importantly it’s a kind of point of gravitational pull towards which my attention and thoughts are driven, taking my mind off Parkinson’s. I don’t dare think about when I won’t be able to fish any more. There’s no point dwelling on such thoughts. Take each day as it comes, as they say. Fishing represents a period of time in my life – the life I’ve always lived. But if I could have more time - an extra hour a day more - I would use it to fight Parkinson’s, because when I think about the future, what frightens me more than anything else is the risk of losing my independence. A daily fight against the limitations that gradually build up like a sand bank in front of me. A fight that is waged together with my wife, who is of such immense help. Not to forget the equally important spiritual help of my children (now living all over the world) and that of my eldest grandchildren. I try not to regret what I can no longer do, but to appreciate instead what I still can do. And in this sense, fishing is a precious ally too. Once a year we abandon our beloved familiar haunts and we go further afield. We organize a trip abroad – to northern countries usually – to try out a new kind of fishing. The fish are different too – pike and perch, for example. This year we’re off to the lakes in Finland, I can’t wait! Advice: live today’s life to the full, appreciating what you have. If you look around you, you’ll see that most people of a certain age have problems. And Parkinson’s is just one of these!
At times it’s only a question of scent
It happened to one of my most important clients, an accomplished classical guitar player whose Baroque repertoire was one of the high points of musical history. I hadn’t seen him in a while, and then I was told he’d stopped playing. It happens, of course. Certain musicians prefer to stop giving concerts, for whatever reason – sometimes they simply can’t stand the stage pressure any more. And that’s what I’d imagined had happened to him, until I found out he had Parkinson’s. I saw it as a tragedy and didn’t have the heart to call him. Five years ago, at the age of 48, I found out I had it too. That was the diagnosis anyway. I reckon I’d experienced the first symptoms a couple of years earlier. I was on holiday in Italy with my then wife, on the island of Stromboli. We’d decided to climb up the volcano, a seven hundred meter ascent. You don’t need to be a mountaineer, but it’s not exactly a walk down the garden path either. It starts late afternoon and ends in the evening. And then you can watch the crater activity until late into the night. A unique spectacle, and highly emotional. But that evening I wasn’t able to appreciate it in full. I was exhausted, not in a normal way though: I’d been struggling all the way up, and had these strange cramps. An overwhelming fatigue. Over the next few months the episodes became more frequent. I started slowing down more often. ‘Slowing down’ is something of a euphemism: what really happened was that I couldn’t even do the simplest of things, like putting on a pair of trousers or a jumper. I was frightened to death that the trembling would start. It was a kind of paranoia. What’s more, I’ve always suffered from claustrophobia so I refused to do the MRI scan, and that made a more accurate assessment of my condition difficult. I suffered from depression, an illness I’d already experienced about fifteen years before, without ever really coming to terms with it. And even now I refused to go to a psychologist. My doctor said my depression was neurotic in origin, in other words, it was sparked off by outside causes. Maybe he had a point, seeing as my wife had decided to leave me: our marriage had been on the rocks for some time, but I didn’t expect such good timing! Anyway, despite my fears that the trembling would increase, I’ve never suffered from hyperkinesia – when your arms and hands, for example, start moving frenetically and uncontrollably. If that had happened I would have had to stop working. That would have been disastrous. Anyway, everything was slower, more difficult and tiring, and not just the physical side of things. My head was functioning differently too – it was as if a barrier had been erected between my thoughts and actions. Everything coincided before, but now it was as if there were two separate dimensions. It was as if I was observing myself from the outside, a dizzying sensation that sometimes led to panic. Even now this happens. I had to slow down at work after the diagnosis: I stopped making new instruments and only did repairs. Luckily I have a very loyal clientele – not only Germans but musicians who come from all over Europe to see me. While I sort out their instruments, they take advantage of the situation and spend a few days in Rothenburg, where I live and work. It’s a lovely city built on the Tauber river, a green and hilly area steeped in history. Working less means I have more time on my hands and so I go walking. I went to a Parkinson’s help-group in a town nearby, but the whole thing was too tiring. I don’t drive, you see, and I was frightened taking the bus. After a year, my neurologist suggested that I try the DBS operation. What is it? Well, it’s Deep Brain Stimulation: an electrode is inserted into the brain and, by means of a pacemaker, it stimulates impulses and should, theoretically, reduce the symptoms. He said that I was the right kind of patient because my condition wasn’t too serious. I said I needed time to think about it, and then I said no. I thought I was in pretty good shape physically, and that my problem was more psychological. I reflected on the fact that I hadn’t told anyone (apart from close relatives) of my condition. Very few of my clients knew. When they asked me for a new guitar I told them I couldn’t because I had a bad attack of tendinitis in my hand and that meant I couldn’t work the wood. I’d always worked alone in the workshop, so no-one suspected anything. I carried on with my walks, especially in spring and autumn (the nicest time of year down our way), did a few repairs and listened to music. I was – and still am – a member of a local music club, and we organize concerts in private homes – just like the old academies! – with some very talented young musicians. A few months after this, early in the morning, I got a call from the guitarist who’d been struck down with Parkinson’s just before me. I hadn’t heard from him for years. He told me he was strolling around Rothenburg with his son, and that he’d like to pop in and see me. I was caught a bit off guard, and told him that I was just about to leave town, I don’t know why. I was kind of afraid, and that dictated my response. I called him back the next day and told him to come round when he wanted. The next afternoon he came to my workshop and I had a hard time recognizing him. His face had changed – he was looking very gaunt, and his head was all smooth and his mouth was hanging down on one side. His lips were really wet with all the excess saliva. His son must have been about twenty-one. After a few minutes he said he was going out to have a look round and that he’d be back for his father in half an hour or so. I looked at my guest and asked him why he’d come. He told me he was nostalgic for the smell of my workshop. He missed the scent of the wooden strips I used. He said it was a very special scent – “the scent of my past,” he added. He’d been caught by a sudden need to experience it again. We sat together for about an hour, looking at each other in the dim light of my studio. Then his son came in and took him away. Before he left I asked him how he was, and he said he was very well. He didn’t ask how I was, and I didn’t tell him anything. This was about two years ago. The following day I got back in touch with the Association and started going again. I needed to find the strength to make guitars. Without overdoing it, of course. One hour a day, that was all. In six months I would have a new instrument in my hand, and on the beautiful ivory-colored pieces of paper hidden away in the soundboard, I would place my signature. Time passes and I’m already at work on my fifth guitar. I’ve decided to give this new series of instruments the name ‘Scent’. They might be the best guitars I’ve ever made. Advice: never be afraid to face up to what you have to do to get better. The more you understand your real condition and potential, the quicker you’ll be able to get back to a normal life.
Allowing yourself to be helped is a sign of great strength
A few days after her husband’s funeral, Grazia phoned me. Usually we didn’t speak for months. There you go, I thought. See? Now she’s a widow, she gets in touch straight away. Instead she said: “Franca, what’s up? What didn’t you tell me?” “What do you mean?” I replied. “What was I supposed to tell you?” “You’re shaking, Franca. Can’t keep still for a second. What’s going on?” I remember that I sat there in silence for a whole minute with my mobile close to my ear. Then I started crying. She had been living in Verona for years, I lived in Pescara. But it wasn’t the distance that had kept us apart. Ever since I can remember I’d always thought Grazia was a fearful kind of person, and fear was something I’d always been afraid of. Especially in others. But maybe it wasn’t that. Perhaps it was the fact that we’d always been so different. She had got married and had two children, nice and big like her deceased husband. I had taught in schools my entire life, bringing up other people’s children. And, I believe, I’d always been very happy. But I had been shaking for the past couple of months, and the more I tried to keep my right hand still, the more it went its own way. Some days I wasn’t even able to correct my students’ homework. I didn’t recognize my handwriting, and it used to be so nice. For the first time I was afraid too. It was an irrational fear of everything. In two years’ time I would be retiring, and I was terrified at the idea I might be forced to leave my job. And my bike rides? And my holidays in Corsica? Two years earlier, in September, I’d fallen off my bike near my house. Some chap had popped out all of a sudden from a driveway with his car and I lost my balance in fright, dislocating my shoulder. Nasty. The pain wouldn’t go away so I went to see a physiotherapist who is also a friend of mine. She noticed something was up before I did. She kept asking me if everything was OK. I kept replying ‘yes’ (that’s what I’ve always said ever since I was a child), but it wasn’t really true. There was nothing in particular. I just felt tired all the time. And then there was my right hand that trembled, not always, but often. And I would hide it, like I used to hide my fingers when I bit my nails as a child! The same tactic! I used to be so ashamed of those nails, gnawed down to the bare minimum! So, to conceal my trembling I scratched my neck continually, or played with my hair (which is curly, luckily!). I’d put my hand in my pocket or place it between my thighs when I crossed my legs. All well and good until one day the physio (who noticed everything) suggested I go and see a neurologist. A neurologist? I must have looked at her as if she was mad ... One morning, I remember it still, I realised I was taking an inordinately long time getting ready to go out. It was as if I was going to go on stage instead of just going to school! I got nervous, but it was a new kind of feeling nervous, and I felt completely blocked. Everything slowed down. A vicious circle: nervousness-slowing down-nervousness-slowing down! I started arriving late for school, late for the physio, late for the train that was going down to Liguria where my friends would wait vainly for my arrival. I realised that time was slipping away, overtaking me, and I was unable to keep up. I always had less time. And the things I love slipped away too: going out, seeing friends, weekend breaks, even the concentration I’d always used for reading and working. Then my sister’s husband died, and instead of mourning away in isolation, Grazia decided to come and help me. After the funeral she took a couple of weeks to sort things out in Verona and then she told her children that she was coming to stay with me for a few weeks in Pescara. She took me to see loads of specialists and accompanied me for the diagnostic exams, like the MRI and other similar things (I refuse to learn all those names and acronyms – I call them ‘photographs’ and we understand one another!). And she was sitting by me, holding my trembling hand, the day the young neurologist pronounced the name beginning with P. If my world didn’t implode at that point it’s because my sister was with me and took everything into her own hands. She often stayed by my side over the next few months, until I understood that my life hadn’t really changed that much after all. I stopped hiding my hand and ruffling my hair without any apparent motive! And I saw that things gradually got better. We went to a spa resort with a group of people with Parkinson’s I now frequent. She did the mineral salts and I walked in water, feeling lighter and much more relaxed. Long water-walks in the swimming pool from one end to the other, with water up to my waist! I felt as if the rigidity was diminishing. I started looking at things more calmly and rediscovered the art of organizing time. Making time, you might say. And I understood that time could be managed more successfully if I accepted the limits that Mr. P imposed on me. It was like a downhill slalom, and with every race my performance improved. Not that I was ready yet for long term projects. I’d love to go back to Corsica, for example. Although it has to be said that Grazia’s thinking about getting the kids involved and all going together next summer. Anyway, it’s back to normal, especially as far as the job is concerned. If everything goes to plan, this is my last year of teaching and I’ve decided I want to enjoy it. I want some good memories, even if I know I’ll miss the usual hustle and bustle. The only real difficulty is writing: I guess that will never come back like before. It’s time to make a small confession: when Grazia’s at my place for a few days, she’s the one who corrects the homework. And do you know what? She’s stricter than I am! Advice: accepting the diagnosis is essential. Being aware of it marks the beginning of the treatment, because the more you know about PD the easier it is to get the best assistance, and you feel better mentally too.
A song to help find the will to live again
My name is Victoria, or ‘Vicky’. I’m no spring chicken, but I’m not that old either. When I meet someone in the street I haven’t seen for ages, I usually recognize them but they don’t recognize me. I’ve changed a lot. But as soon as I open my mouth they know who I am. It’s my voice, you see. People say it’s a rather particular voice: low-pitched, raucous. I used to sing when I was a girl. I was a great fan of Nina Simone, and if a guitarist happened to be around, I had to do the singing bit. For a while I even thought about having a go, you know, on stage. Then love came along, and a child, out of the blue. I decided to go back to my studies: psychology. Some years later I was working on certain types of depression that are often connected to neurological diseases like PD. That’s not to forget that with Parkinson’s, depression can actually be a kind of alarm signal that precedes the onset of more recognizable symptoms (like bradykinesia – difficulty in making even the most ordinary of movements), and not a consequence. Anyway, most of the time I get colleagues sending me patients who are depressed as a result of the diagnosis. Karina is a journalist more or less my age. She wasn’t a particularly bad case of depression – it was more a case of her being in a state of dejection, quite common really. She reminded me of my mother in some ways: the same beautiful, blue – almost violet – eyes, and similar ash blonde hair, medium length and quite unkempt (a sign of freedom). My mother was like that too with her hair. Besides working for a paper, Karina also had a foreign politics slot for a radio in Munich, the city where I now live. I was born in Hamburg. Karin had been a person with Parkinson’s for about three years, and she had big problems with her voice. She didn’t have hardly any other symptoms, apart from the odd episode of hypokinesia in the morning: it was quite difficult to get going sometimes. She said she sometimes woke up in the same position she’d gone asleep in. She was afraid that that fixity – so unpredictable in its coming and going – would one day become her definitive condition. She told me she was frightened she’d become a statue and – the worst thing of all – that this would happen before she’d had a chance to do something heroic for her country! That made me laugh. Karina had a nice laugh, especially with her eyes: her voice was little more than a whisper. This is one of the possible consequences of Parkinson’s, and it’s one of the things that most impacts people’s lives. The voice loses its tone and volume, and the timbre is modified. The individual’s language tends to become monotonous, prosody is lost and single phonemes are emitted in a stereotyped manner. It’s as if the sounds we make are all the same. This is due partly to breathing problems. Karina had abandoned her radio show for the last couple of months, and it was clearly a source of deep frustration for her. I asked her if she’d like to sing with me and my group. You know, when your voice is also impeded you realize that it isn’t just something that we ‘hear’: more than that, it’s a way of saying: “I’m here.” Every morning it’s a way of recognizing yourself, and of being recognized. I’m a shy person. When I was a kid I was shy as well, but when I sang I really let myself go. It was almost as if the voice was stronger, more real. Gradually I went back and started looking for the voice I’d lost and, once I found it that was it: I started singing again. And then I joined a choir. There I met a teacher of ‘song-therapy’ and together we created another group where we work with patients like Karina. We sing and, at the same time, we try to find the voices of those who’ve lost them. The fact that they are not ‘understood’ when they speak means that many people with Parkinson’s end up not being ‘listened to’. Isolation increases as a result of not having a voice. All of a sudden it’s as if you become dumb. Maybe this was why Karina immediately accepted my proposal to join my group. We sing old jazz numbers – beautiful, easy-to-listen-to tunes in the company of a really nice pianist who is very professional and … very patient! There are three voices in the group at the moment, four when the double bass comes along (he’s a lawyer, actually), and all of us have a nickname: I’m Nina (obviously). I love the songs of Richard Rodgers, like My Funny Valentine; the teacher adores Gershwin and her number one piece is Summertime, and so on. Karina listened mainly the first two times she came along, but on her third visit she asked the pianist if he knew Charlie Chaplin’s Smile, a sweet little number that goes back to Modern Times. The pianist, Otto, knows them all, and what he doesn’t know he improvises. The teacher told Karina not to worry too much about the words at first and to concentrate on the melody. And before that, breathing. Respiration is key to what we pronounce – that’s where the voice comes from, and rhythm too – and the harmony we give to the sounds we pronounce is transformed into something other people can recognize. Gradually, one step at a time, Karina started singing a bit. “I’m not exactly Ella Fitzgerald,” she said, “but I can make it!” The rest of the afternoon we laughed and sang. A couple of months later I witnessed a similar, almost miraculous, transformation with another ‘choir member’: the voice reappeared with the music, and became newly confident in song. Parkinson’s has a number of social implications, and people with Parkinson’s often feel embarrassed about their condition, tending to hide away. This fear must be overcome by returning to the world, doing something with other people, sharing. Karina recently told me that the reason she’d left the radio was because she couldn’t find the time to do all the preparation, not because of her voice. And she couldn’t find the time because she’d lost the will to go out and be with others. When you feel stimulated, the time comes back, she said. In the meantime, we’ve become friends. We’ve even been to Berlin together for a weekend. Her radio show is now back on air and it lasts for an hour. I listen to it every Saturday morning, and very interesting it is, too. It’s about the world. Advice: have fun. If there’s something you enjoy doing in your free time, dedicate time to it and make it more important. If you don’t have a hobby, invent one, look for someone to share your passion with, join a group. Don’t stay on your own. Open up to new people and relationships.
Cultivate your passions to win over your fears
Ten days before she showed up in Barcelona, Ingrid and I had spent what she called one of ‘our evenings’ on Skype. On the screen I could see her house in Frankfurt: it looked like a green nest and she resembled a little bird in search of the sun. “It’s been raining here all day, as usual,” she laughed. “It’s sunny here but there’s a cold wind,” I laughed. “Can you take me to that wonderful place for the tortillas?” “The moment you arrive,” I promised. Ingrid calls me Batik because she loves my colourful silk scarves. She wears them to astound people in her grey city home, which is my home too, even though I’ve been living here in Spain for so many years. How long have we been friends? Mmm, I don’t like to count the days. Let’s just say long enough to have witnessed nearly all my loves, and the arrival of the unexpected guest, Parki. I was thirty-nine, now I’ve turned fifty-five. Things hadn’t gone exactly according to plan: I was supposed to go to her, back to my birthplace, but she came to me. The tickets I’d purchased remained in the computer screen – they hadn’t, let’s say, had the honour of being printed. Two tickets – not one – down the toilet! I hadn’t had a crisis like this for ages. The anxiety attacks had taken on the selfsame appearance of the plane’s fuselage – even the same colours as the low cost company! I’d battened down the hatches: a little music (Frank Sinatra), not too loud; breathing deeply to see things clearly and get back my sense of balance; and my favourite asana, the ‘rolled up leaf’. That’s the cocktail that gets me back on the road. Always. I’d recently cut the stem of a superb, pale pink rose. I’d also found a twig belonging to a peach tree. It was so slender, almost vein-like. And I’d peeled off a piece of bark from a tree. That would do for a frame. Sometimes on my way back home I walk past a garden that looks like it’s out of a fairy tale. I stretch out an arm and gather up elements I can use for my ikebana. Together with the batik, this is my second great passion. They’re not hobbies nor pastimes, but genuinely fulfilling activities. Ikebana regards our deepest selves and I’ve often wondered if it’s a mirror, a reflection or maybe a picture enclosing the tension of perfect harmony? What is it about these fragile compositions of organic elements that attracts me so? At times it’s a speedy process, at others it takes much longer. A bit like life really. At that particular moment maybe I was still feeling upset about the journey I’d missed. I stared at all the various elements, but couldn’t find the key to put them all together. Ten days later, the September morning of Ingrid’s arrival, it still felt like midsummer, but my mood was decidedly wintery. I imagined her landing, then the wait for her little suitcase and after that the taxi ride to my house and the doorbell. I’d been looking at the sea from my window but I couldn’t seem to get my act together. I was blocked, but the ringing of the bell suddenly brought me round. The voice, words and familiar sounds were already a cure. The first present – a light green dress – appeared from the suitcase. “You see? Got it right this time – no buttons!” Ever since Parki appeared, those irritating little thingummyjigs that make such a song and a dance about having to be inserted into buttonholes have disappeared from my wardrobe. T-shirts are all the rage now, as is the electric toothbrush, and I’ve done all I can to camouflage anything that might smack of a rest home. I no longer try to deny Parki exists, and any hang-ups I might have had about asking for assistance are long gone! But living alone has its advantages: negligence and idleness are not allowed. As Nelson Mandela said: “Courage isn’t the absence of fear, but the triumph over it.” In brief, there we were sitting in front of the famous tortillas beneath a striped yellow awning, with the Mediterranean in front of us. I could see freckles forming on Ingrid’s face. She asked me about the batik and if I was going to exhibit them like I’d done a couple of years back. “I like the way you match up the ultramarine, the pink, the ochre and the mauve.” She’s been going on at me to teach her how to dye them, but we always end up making excuses and leaving it for ‘next time’. Her visits end with a nice chat or a long silence. Either way, few things help me to relax quite so much. I involved her in my love for photography, not that my camera is anything to write home about. I enjoy putting my ‘artist’s eye’ to the test and then mounting the photos with Windows Media Maker. It’s a helluva job, bearing in mind the modest results, but it can be very satisfying when things turn out right. Time had flown. In two days she’d be off. We were on our way back home and the heat was making itself felt. It had been a good day. Ingrid said: “Why don’t you take the plane together with me?” I shook my head like a little girl. Anxiety was raising its ugly head. “You wouldn’t be alone. I’d be with you. Come on…” I said no, but Ingrid insisted. Then she stopped. After dinner she started up again. I was tired, exhausted actually, and I must’ve surrendered when we got to the tiramisu. In the end we organized the tickets together, sitting on the sofa in front of the computer and laughing. The next morning – don’t ask me how, because at that time of day Parki makes his rounds, and Ingrid was still sleeping – I went back to my enchanted garden. I found the rose with its velvety petals and another peach twig, even more slender and solitary than the first. In next to no time the elements came together on the bark in a sort of secret harmony. A harmony – this was what I understood at that moment – possessed of all the ephemeral beauty of time that passes. Ikebana is, quite simply, this. Time is what you do with it. Abraham Lincoln once said that it’s not the years in your life that count: it’s the life in your years. I see and experience Parki as a real challenge, an opportunity to demonstrate that I’ve been able to put up a fight during my brief sojourn on this planet. And I hope that when the Big Day comes and the curtain comes down I’ll be able to sing along with my beloved Frank Sinatra: I’ve loved, I’ve laughed and cried I’ve had my fill; my share of losing (…) I did it my way. Ah, I almost forgot … Ingrid and I clubbed together against that beastly Parki and we won: we got up and left! Advice: live life mindfully and truthfully. Don’t be afraid to ask for help. Don’t waste time doing things that make you unhappy or tense. Carpe Diem!
Don’t stop giving and helping others
A perfectly ordinary scene. There’s a man and a child. The man is tall and even if he isn’t old, he has white hair cascading down across his wide forehead; the child is wearing a red jacket with two yellow stripes on the sleeves and a pair of white rubber boots. The man is standing still in the centre of the square in front of the cathedral, which is all white too. The child – his child – runs off and suddenly comes to a halt, checking to see if his father is following him. A disappointed look crosses his face. It’s the same every time. The man shrugs as if to justify his inaction, and hazards a few steps. That was when I understood that he had Parkinson’s. Like me. I studied comparative literature, aesthetics and philosophy, and I taught creative writing at university for many years. I’ve often asked myself if it’s more difficult to write, or to teach someone how to write. Writing has always been second nature for me. It’s funny because writing is one of the most misunderstood activities. I mean, everyone thinks they can write because writing is like walking, it’s one of those things you learn when you’re a kid. Right? Stand up, run from here to there, run! Similarly, write your name, write what you did at school today! It’s like riding a bike: once you’ve found your balance, you pedal for the rest of your life. But when people – and not just young people – attend a course of creative writing, they discover they don’t know how to write. Or rather, they realize that they don’t know how to tell what they want to tell, they don’t know how to make themselves understood. It happens when you’re speaking too, right? Writing is my passion. Actually I think it’s fair to say it’s my profession. I’ve published eight books, novels and other things, and now I’m working on a book about Parkinson’s and writing. I suppose you could call it an obsession. I’ve had Parkinson’s for about ten years now, and most of my time is taken up by voluntary work in organizations that deal with the illness locally and internationally. We have a supporters club, a Facebook page and several projects up and running to help not only patients but family members and caregivers too. I’ve been a delegate at conferences all over the world. Sometimes I may even happen to read and comment on what my fellow people with Parkinson’s have written. It’s difficult to talk about Parkinson’s and explain what it really is. The mass media usually deal with the up side of things: courageous people who refuse to lie down, those who suddenly discover new values and their real selves, new friends and interests. I’ve often heard people say that the whole story about Parkinson’s should be told – including what happens at the end – but perhaps that would be too painful for our media and the general public. With this in mind, I remember that my wife was very worried about me at the beginning. She didn’t know how to react. She stopped touching me. And so it went on for six years, without hardly ever touching each other, until we got divorced. Only to get back together again a year later. By that time I’d become more mature, we remarried and we went on a second honeymoon! Before, my identity had been – how can I put this? – vague. Now I understand more fully who I am, besides being a university professor and a writer. I can feel my emotions more intensely, and I’m more aware of them, and that’s a bit risky too because I tend to ‘fall in love’ continuously, experiencing irrational passions – maybe the drugs have a role in all this (obsessive-compulsive symptoms)? As it happens I’ve always preferred female company anyway. I’ve always had women around me – they’re so important for my vision of life. My mother’s eighty and I still talk to her every day. About everything! My wife and I live just outside the capital in a sixth floor apartment that takes in three sides of the building. You get great views, and the flat is bathed in natural light. I love the sensation of light and space: since giving up work I spend lots more time at home, sometimes for days on end. I organize my voluntary work on the PC, watch documentaries on Youtube, alternative cinema, documentaries on American police violence, the war in the Ukraine, and plenty of amusing stuff too. It helps me to relax… Sometimes I just lack the energy. If I had one extra hour a day I’d stay in bed and try to solve the underlying problems of one of my favourite philosophers, Ludwig Wittgenstein, the author of Tractatus Logico-philosophicus. In the afternoon or towards evening I usually manage to drum up enough energy and concentration to put pen to paper. Today I know when it’s the right time to shave, get dressed and go out for a stroll or to do some shopping. I also know when it’s the right time to stay at home and gather up my energy and have a nap because maybe I didn’t sleep well and I nodded off at the lunch table while I was still eating. At times I can’t help wondering what I’ll be like in five or ten years’ time. But I’ve accomplished much more in these last few years than I ever imagined at the beginning: I’ve travelled a lot and I’ve written. With my person with Parkinson’s companions of the Association, I try to remain upbeat. We have a joke and a laugh – humor helps you to live better. My stories often have happy endings too. Like that of the man and the boy in front of the cathedral: the boy makes his way back, takes his father’s hand and accompanies him to the steps that go down to the beautifully sunlit promenade by the sea. Advice: be kind to yourself and to others. Don’t stop giving. Open a door, pick up someone’s bag, spare someone a dime. There’s always someone worse off than us: you could be their hero, the star of your very own existence.
Even the world on your back doorstep is wonderful
Photographs are images of desire. And desire – the desire to capture a moment, an instant – is what motivates me when I leave the house with all my gear. And the desire is associated with nature, with my finding myself in the middle of the countryside. I take pictures of landscapes; I love photographing storms; but best of all are the birds, my favourite subject. Now I’ve got time on my hands… My name is Bruce and I live a few kilometres outside Zurich with my wife. I’m forty-two and I’ve had Parkinson’s for nearly nine years. Up until a couple of years ago I was the chief marketing manager for an orthopaedic accessories company – prostheses in other words, for the knee, hip and shoulder. As often occurs, the whole thing started off with something pretty insignificant. I’ve always brushed my teeth with quick up and down movements (we all have our little habits, right?), and one day I couldn’t stop brushing. Quite often, in the evening, my right hand wouldn’t stop trembling. And then this started going on for a whole day. At that time I’d just finished my Masters in Business Administration and I was working full time. It’s funny, but the trembling started the very day I finished my Masters, and I thought it was probably due to the release of tension as the whole thing came to a close. We went on holiday for three weeks, and I thought things would’ve gone back to normal, what with relaxing and everything. But… After seven weeks I went to see the doctor, and he told me to go and see a neurologist. I did a whole series of tests, like the DAT-Scan and the MRI, and I got a second opinion. Five months later the diagnosis arrived. Everything considered, I didn’t react too badly. I didn’t get depressed and I wasn’t afraid. From the beginning it was clear to me that PD wasn’t a disease, but something that was part of my life. The symptoms are part of me. I wouldn’t be ‘me’ without them, so I don’t worry. Let’s be frank: I wouldn’t be able to change things anyway, and it would be absurd of me to imagine a ‘healthy me’ now. People get old, they get sick and they develop all kinds of disabilities. That’s life. My wife, on the other hand, was afraid. During the time we were waiting for the diagnosis she searched for evidence that would help to contradict the gloomiest of outlooks, but the opposite invariably occurred. The rug had been pulled from under her feet, and it turned out I was the one providing strength and support! Some of my friends took it badly, surprised that a man of just 34 had been diagnosed with such an illness. I told them: look, I’m the same man as before. I haven’t changed! I’ve never experienced any kind of crisis, everything is running smoothly. And I try to be punctual when taking tablets with my food. The clock is very important, it’s almost a cure in itself: most of my medicine only begins to take effect after I’ve eaten. That’s why I don’t touch any food for an hour before taking my medicine and for half an hour afterwards. But then I have to eat! I trust my feelings and maintain solid contact with my body. And I don’t make mistakes like: Oh! I need to relax more… and off we go with some extra pills! Calm and relaxation are essential: it’s quite stressful when you have to do something quickly, because at that point the drugs suddenly seem to lose their effect, and are useless for the rest of the day! Today I’m feeling really good. And I’m not joking. I consider what Parkinson’s has given me in exchange: in the past I used to slave away and didn’t have any time to do what I liked. I was always struggling to figure out the work-life balance. Two and a half years ago I was able to retire from the scene, a full twenty-five years before my natural mandate ran out, and I obtained the most precious thing of all: time! What I’m saying is: look at what Parkinson’s gives you, not what it takes away. In my case I was able to dedicate myself to photography. And if someone said I could have an extra hour to add to the time I’ve already gained, I’d pass it outside, along the river bank, taking even more photos. Of course, I can’t ride my motorbike like I used to any more. But you know how it is: if your hand trembles uncontrollably on the accelerator, perhaps it’s not such a good idea! I do miss the buzz I got out of racing my motorbike down the road, there’s nothing that can quite substitute that. Even though … when I set up my camera on the tripod and I stand there focussing on the buzzard, like the one before me now – so princely, in harmony with its surroundings, so handsome and proud of its independence. Not an easy emotion to describe. And the eagle? The falcon? The owl and the woodpecker? There are so many things to know and see right on your back doorstep! I spend at least three months a year travelling around Switzerland and other places taking photos. I go out into the country every day to take photos, and then I organize presentations with the help of Parkinson’s help-groups and send off images to a Swiss newsletter that’s distributed among patients and their families, complete with helpful information. In a certain sense Parkinson’s is a high-minded kind of illness because you can’t influence its progression for better or worse. What I mean is, you can’t really impact it one way or another. For now, only the right side of my body has been affected by trembling (the foot, leg, arm and hand). If the left side were to start trembling too, I’d no longer have the ‘friend’ to lend a helping hand. But I don’t think too far ahead, I just enjoy the moment for what it is. I don’t feel afraid. Fear is like a golf ball, something I smash from one part of the course to another, hole after hole. After half an hour hanging around, half an hour well worth the wait, truly unrepeatable, here’s the buzzard in all its glory, perched atop a branch, upright, erect, like a proud warrior: it turns its head slightly and then bows downwards as if it’s about to dive down from a rock. And its black, lacklustre eyes are so expressive. Click. Next weekend we’re holding an exhibition together with other local artists. My wish is that my buzzard manages to tell the tale of its extraordinary expressiveness. Advice: the clock is as important as any natural remedy. Keep an eye on times so that the pills work as efficiently as possible, allowing you to manage your schedule in a calm, stress-free and optimal way.
Life is a long game of chess. Make it entertaining
There was a time I played chess via mail. My fellow players had no face I could relate to because their moves were communicated to me via postcard, and I replied in identical fashion. I have to say that I enjoyed it: receiving those strange postcards from Israel and other countries too. I’ve played chess ever since I was a child, starting at about the age of six, and I love it. Chess is based on concentration, the analysis of concrete solutions and the gradual acquirement of tactical know-how. The aim is to discover your opponent’s intentions. Pure joy. Today I play chess on the computer. The PC has become my best friend, especially since I was diagnosed with Parkinson’s: it’s always up for a game and I can fix the match settings according to my level. Occasionally I play with my grandson. He seems to have inherited my passion for the game. Up until two years ago I taught animal nutrition at the Animal Sciences Department of the Agriculture faculty, I was head of department and head of staff. I still maintain regular contact with the University of Tel Aviv, and am currently helping a number of students with their theses. I live with my wife in Rehovot, about twenty kilometres south of Tel Aviv, where I was born. I’ve had Parkinson’s since the age of 56, almost fifteen years. The main problem is the feeling of stiffness in the muscles, which causes pain on an almost continual basis. The pain makes it difficult to behave normally. And then I don’t sleep well. Maybe that has something to do with fear: the subconscious is probably inundated with new fears that make themselves felt during the night. But I was lucky, in the sense that Parkinson’s struck down my older brother a few years earlier than me, so I knew what to expect. When the news came, I was ready. And then there are certain advantages, if one may call them that: now I’m much more aware of just how fragile we are. And I react to outside input with greater emotion. On the whole I don’t think the illness has really had a negative bearing on my emotional life. My life has remained about the same as before, starting off with my job – which I haven’t had to abandon. That would’ve been awful, insofar as it’s a job I’ve always loved, and always will love. It was a passion of mine even before I’d thought about making it a career, something that even preceded my decision to go to university and study. Like many students of the time I’d gone to live in a kibbutz, and being a shepherd was one of my community tasks. I spent nearly all my time with goats and sheep. Cows, too. I’d never imagined I would’ve so loved being with all these animals and getting to know them. And I was so curious about them. That was what persuaded me that Animal Sciences was the right subject for me – it was so clear and simple. Done! Once I’d finished studying, I started teaching. In this area of study I’ve looked into many different aspects of animal nutrition, concentrating mainly on dairy cattle. The dry climate of our country means there are many difficulties involved. Getting good cattle fodder isn’t easy, and milk production could be better. There’s a lot to do at university but it’s very gratifying. Not everyone is lucky enough to be surrounded by young, talented students in their workplace, and being able to follow them in their academic careers provides immense satisfaction. Lectures and research take place at university itself or in countryside-based commercial farms. I’ve also done a lot of off-campus activities, holding lectures abroad, and every seven years I’ve taken a sabbatical year to study in other countries – I’ve been to Switzerland, Holland and the United States with my family. I’ve always loved travelling. And I’ve always enjoyed the company of friends, and even in that sense there haven’t been any changes. If anything, I’ve now got more friends thanks to people with Parkinson’s! Many of them are interested in the latest research, or possible cures and therapies that might enhance the quality of life. I always encourage my person with Parkinson’s friends to be more active physically and to take part in the voluntary activities of the patients’ associations. I like to be in the thick of things, and that’s why I still follow all those students who still have to get a degree. I like reading books, even digital versions, in English or translated into Hebrew. I’m interested in books based on historical research. Recently I read Tom Rob Smith’s Child 44 and Victoria Heslop’s The Thread, an epic saga set in Greece that covers the entire twentieth century. We’re planning on going to Greece with friends some time in the next few months. Of course, I can’t make plans too early in the day, and long term plans are best left well alone. But it would be nice. There’s less time to make plans now, and my daily diary has certainly changed, but I love what I do and I don’t think time is wasted in any way. If I had an extra hour a day, I’d use it to do what I love, like reading. And playing chess, of course. It occurs to me now: even with Parkinson’s I still play chess, and like my opponents of yesteryear, he too has no face. He makes his moves, I make mine. Sometimes it seems as if he’s winning, but I often put him in checkmate – when I know what moves he’s going to make and I can see through his tactics. Advice: to those who’ve recently been diagnosed I say: it’s not the end of the world. There are many ways of making your life better. Take care of yourself, do regular exercise, take a rest when required. And, most importantly, look on the bright side.
Rediscovering the rhythm of life with the tango
“That’s it, now the sacada, foot down and ... turn!” Keeping his posture, Gaetano made the movement with casual ease. “And now the salida, like this ...” I spur him on, letting him carry me off. We’re in the centre of the dance hall under the careful gaze of my husband, Marco. He is following the lesson, turning up the volume of the music – a beautiful, heart-wrenching tango. My name is Elena, I’m 43 and I’m in charge of nursing co-ordination at a big hospital. To be more specific, I deal with the rehabilitation of people afflicted by neurodegenerative diseases like Parkinson’s and multiple-sclerosis, as well as stroke victims. What I really enjoy is establishing a personal relationship with patients. I wouldn’t be able to work in the operating theatre or intensive care. Human relationships are important for me: I need to feel I’m useful, whether it be at home or at work. And to think I was the first in my family to go into healthcare. When I was little I used to pretend to be a nurse: I’d slip a cushion-cover over my head, fix it with my headband and lay my doll down on the kitchen table! To tell you the truth, my dad didn’t want me to be a nurse. He was against it. He thought that by spending all my time in the midst of suffering I’d end up suffering too. At the age of 16 I enrolled secretly at the professional school of the Niguarda Hospital in Milan. Mum signed the documents for me. It’s not like that now – you have to have a diploma. Three years later I was a fully-fledged nurse after passing my exams with top grades. Dad was so proud he couldn’t contain himself. I like sharing what I know with others, so I started teaching at the professional nursing school. Work isn’t my only passion however. I love dancing. Any time is the right time for a dance with my husband Marco (who works as a chef): ballroom dancing, waltzes, the lot. I’d always enjoyed listening to tango music – composers like Piazzolla, Gardel and Osvaldo Pugliese – because I found it so emotionally fulfilling. But I’d never thought about dancing it. It just seemed too difficult. I decided to start dancing the tango after my father’s death in February 2005, but I don’t know if the two things are connected. He suffered for a long time, but I was always by his side. I cared for him as best I could, not only as a daughter, but also in a nursing capacity, and that made a huge difference. For him, too. In September of the same year Marco and I decided to enrol in a school specialised in Argentine tango. It wasn’t difficult to persuade my husband, quite the opposite: we understood immediately that there was something special about the tango compared to other types of dancing. It required interpretation and improvisation. A whole new world opened up for us! What we enjoy most is being able to express ourselves through dance. The tango is a role play, and men are expected to do the leading. Character-wise I’m a leader, and I find it difficult not to take the initiative. At work I’m the head nurse, and I feel a bit like a manager: I have to co-ordinate 30 nurses and I’ve usually got about 40 patients at any single time. For me the tango is all about abandonment: I can relax and let go at last, because someone else is carrying me along. But it’s not a passive thing by any stretch of the imagination. You feel pampered and protected. Our love story with the tango grew to such an extent that we became instructors ourselves three years ago, and we opened our own little school where we teach in the evenings after work. At the beginning we thought we wouldn't have enough time to do it; but then we realized that if you fill time with something that you like - something that satisfies you - it grows, it kind of broadens out. While all this was happening, the ward where I work had started experimenting with the tango in rehabilitation. It was called “tango-therapy”. I united my own rehab-expertise to my passion and developed a method that is now an integrated part of our clinical rehabilitation programme. Sometimes people get to hear of my experience, and people with Parkinson’s like Gaetano come to dance in our school. There are several reasons why the tango is suitable for rehabilitation, especially for people with Parkinson’s. Most importantly there is the type of control you are required to exert over posture. And then there’s the powerful sense of deliberation that exists between thought and movement. When I get my patients to carry out certain sequences, it’s almost as if there is time to regulate the movement. What I mean is, you manage to break down each segment of the action. I have time to consider, time to think before I move, before deciding what kind of step is necessary. One of the most common scenarios for people with Parkinson’s is when they ‘freeze’. They simply stop moving, for example, when confronted with stairs. The cycle of movements that characterizes the tango consists of an exercise, then a pause, exercise-pause, stop-start again: the patient learns to simulate these steps in daily life when difficulties arise. I’ve actually witnessed some of my patients make the little step backwards, then move to the side before stepping down the stairs: as if they were dancing! The tango is all about determination. The man must have clear ideas as to what he wants his partner to do. So he can’t be late! This is true for the woman too. In all cases thought is speeded up and made easier with the tango: the command that leaves the sphere of thought to trigger off physical response becomes much clearer. At the beginning my patients looked at me as if I were mad! Especially the men. They didn’t appear convinced at all. Then I started explaining why it was fun: music was great and they could do things in groups. Everything is monitored by doctors: they choose who can take part, and everyone accepted. The only one to refuse was a widower. He confessed to me that while his wife was alive he had never taken her dancing. Having always denied her that pleasure, he didn’t feel like taking part now: it would have been an act of betrayal. So there we were, patients and physiotherapists, all up and dancing the tango. I chose easy steps that everyone could do, and something happened straight away among the patients: they saw they were able to do the tango and this brought about a change. They were a bit ... full of themselves, if you see what I mean! I noted this from one detail: when they came for regular rehabilitation they wore their usual tracksuits and didn’t really smarten up. But when it came to tango sessions, they got dressed up, put on perfume and some asked for a rhinestone blouse or a nice little jacket to be brought from home. Even lipstick made an appearance. Starting from the tango, some patients found a new way of thinking about their bodies. And their lives, too. Advice: apply whatever you learn in physiotherapy and dance to everyday life.
A Small Gesture can be a Big Help
The appointment is with Andrea Chénier, the French poet guillotined during the French revolution. But getting there on time proves difficult. Not because the tragic hero – poor thing – lived over two hundred years ago but because I never know what time I’ll be clocking off from day hospital. In conjunction with the premiere performance at Covent Garden, it’s being shown at the cinema. True, seeing it at the flicks is nothing like being seated in that magnificent theatre, but it’s still an emotional experience. What really matters is being able to close my eyes and let the music I adore carry me away. Opera is the backbone to History because music – not silence – has always accompanied humanity on its march forwards. Opera brings to life all the beautiful things Europe has produced for humanity, and going to the theatre is my way of getting away from things and clearing my head. I have to deal with suffering at work every day, and death often raises its ugly head. My name is Federica and I’m forty. I chose to become a neurologist because I hoped it would allow me to understand the human mind. Not just from a psychodynamic point of view, but also biologically speaking: I wanted to know where thoughts came from and how they take form. I think a neurologist is a scientist like Antonio Damasio, a Portuguese doctor who’s written fantastic books on the mind, and whose theories have been confirmed by scientific evidence. I’ve always been fascinated by the idea that you can see into the mind, and progress in medicine has been such that we are now in a position to see much more than before. Even before getting my specialization I was working on neurodegenerative diseases – like Parkinson’s – in the hospital ward. Increased life expectancy has brought about a considerable increase in the frequency of such diseases, and it’s easy to see why: the older you get the more human biological systems deteriorate. When I finished my specialization I started work as a neurologist in cardiology. I used to do the nighttime shifts on A & E, but after a year neurology had absorbed the service I was involved in, and what amounted to a semi-intensive therapy service was set up. The head physician asked me if I wanted to stay and work with that kind of service and I agreed. And that was how I went back to what I used to deal with first time round. I started working with diagnostic instruments. Alright, what I do is prepare the diagnoses after first examining with a well-trained eye the results provided by special instruments like the MRI, the CAT and ultrasound. Compared to many other neurologists who aren’t specialized in this field, I think I can be really useful when interacting with the radiologist. And that’s important because the images don’t always tell us what we want to see. It’s up to us to ask the machines what we want to know, and when it comes to MRI scans we have to identify the sequences that help us to obtain a clearer answer, because the neuro-images aren’t always able to provide the information we’re looking for. It’s a bit like looking at a Maria Callas photo where you see only the face and you can’t see if – in that photo – she had slimmed down: you don’t get the whole picture. With diagnostics it’s the same thing. Let’s say you want to see what’s inside the eye. You have to carry out a sequence of scans to suppress any traces of fat present in the eye socket, otherwise the optic nerve remains hidden. All you see is a white mass. You don’t get the answer. Knowing what to ask the machine is essential if you want to go beyond what you actually see and you’re convinced the diagnosis can be found somewhere else. This often happens with Parkinson’s: many people with Parkinson’s go to see a psychiatrist at the beginning because the symptoms are interpreted as depression. When symptoms like trembling and slowness of movement appear, they are added to the first and it is understood that the problem is of a different nature. With the advent of neuro-images, we’ve been able to create atlases of normality – real maps that we can compare with a brain that is starting to age or degenerate. I always fancied the idea of doing medicine. When I was at school – I must have been about seven – my mum made me a present of some anatomical tables. ‘Transvision’ they were called. It was a little green book with see-through leaves that meant you could place one leaf over another. It was wonderful. But if I think about it now … well, detailed anatomical tables of the nervous system weren’t exactly a typical present for a little girl of that age! When I finished secondary school, I did the admissions exams to get into medical school. I remember feeling empty inside while waiting for the results: if I didn’t get in, whatever would I do? I had no idea. I think I’m better at work than in my everyday life. In real life I tend to be anti-social: I feel better when I go to the Opera or when I’m with my books or my cat. The compassion I feel when faced with human suffering brings out the best in me. At work I’m not the kind of person that gives up. When there’s a problem, our duty – as doctors – is to try and solve it, despite all the problems we come across on the ward. You have to be able to empathize to a certain degree. That sick person could be me. It’s horrible being unwell, and when you’re seriously ill you need someone to offer you a helping hand. It’s not rare to see a woman on a stretcher, whose name you don’t know yet, and she’s searching for you with her hand. Maybe she’s just thirsty. Her mouth is dry. You are not carrying out medical aid, but helping. You have to ask the patient how he or she’s feeling. Sometimes you’re confronted with a person with Parkinson’s who has serious symptoms. They might be trembling, having difficulty moving, or maybe you can’t understand what they’re saying because they’re speaking in a quiet monotone. But if you ask them how they feel, they’ll say they have tummy ache – they’re concentrated on that. You have to try and discover which aspect of the disease is felt most acutely, something that is described in more detail – to understand what it is about the illness that leads to the most suffering, what it takes away from the patient, what he or she is fighting most fiercely against. And start from that. Advice: listen to the patient to see what lies behind the symptoms
Learn to be a partner not a servant
Idria is a small town of red roofed houses surrounded by green hills rich in mercury. Up until a few years ago, mercury sulfate was extracted in massive quantities. Then the mines were closed down. It’s a quiet little town, and at two in the morning there aren’t many lights on. Mine often is though. Perhaps you can catch a glimpse of me? There I am, wide awake and unable to sleep. I nearly always read until late into the night. I’m currently reading a book I’d never actually thought much about before. Strange really, because I love the classics of Slovenian literature, and this was well known to me. Alamut was written by Vladimir Bartol in 1938. It’s about a prince who governs the fortress of Alamut. One day two children – Halima and Tahir – arrive at the fortress. They’ve been sold by their parents and are to receive an education at the hands of the sovereign. The fortress comes under threat and the childrens' fate changes forever. It’s a slightly disturbing story and the style is a bit old-fashioned, but it’s unputdownable. And why should I put it down? When my husband was around, all I wanted to do was read in peace. He died a year and a half ago. He had Parkinson’s. When I look at the outline of the hills on certain nights I think of him intensely. He was a mining engineer and had worked for many years in the mines. When they were closed down he started work at the Ministry of Defence as an expert in natural disasters. He used to say: «Miskolin, you know that disasters are my speciality!» How we laughed. My husband was a nice man, intelligent, and good-looking too. He fell ill at the age of 54, but I think the symptoms went back as far as twenty years earlier: inexplicable pains in his hands, tiredness, sleepless nights. All of a sudden he felt the need to go horse riding. My motto is: “If you desire to do something, and it’s feasible, go for it!”, so we bought a couple of horses, had a stable built and we started taking riding lessons. The fad lasted two years. Something happened and my husband no longer felt up to it. There was no explanation. Our family doctor immediately suspected something of a neurological nature. At the beginning I wasn’t afraid because I didn’t know how hard the disease was. I didn’t know much at all, apart from the trembling bit. I don’t think the mass media or family doctors know enough about it, either. And politicians rarely discuss the issue. I at once set about helping him and got in touch with the Parkinson’s Association (of which I am now President). The disease didn’t change my approach to life. I’ve always been an optimist, and I wasted no time trying to adapt and sorting things out. I’m not afraid now, but I was at the time. I tried to find out as much as possible about the illness, listening to my husband and to other people with Parkinson’s I got to know through the Association. Even the doctors learn a lot listening to patients. Before the onset of the illness my husband was a very active person. We did loads of things together. His hobby was building – he was a real handy man – and, when I could, I helped him out. At the start it wasn’t hard to encourage him. True, your plans do go topsy-turvy, but we continued to travel, which is one of the things we enjoyed doing most together. Then the jealousy set in, and things started going downhill. First it was the doctor who was following his disease. Then it was any man, of any age. Every time I went out there were questions to be answered; he re-called all the numbers I had called. Sometimes I would find him outside the office where I’d had an appointment, or he’d remain seated in the car waiting for me, eight hours at a time. He’d never been the jealous type before the illness, and I’d never given him reason to be jealous. This behaviour of his was completely out of character. He’d always been a kind man, never a harsh word. Now here he was, suspicious of everyone and everything. Especially of me. Things came to a head one Christmas Eve when he threw me out of the house saying he couldn’t stand the idea of living with a woman who had so many men! In the middle of the night I ended up going to the drop-in clinic where he was being treated, and I told them about the situation. I even called the nurse at the person with Parkinson’s neurological centre: I was told to reduce the dosage of Requip that he was on, and take him to hospital, but he refused. He wasn’t aware of his jealousy. He didn’t own up to it. After a couple of weeks he was taken in to the neurology clinic, and when he came home he went through all the mail I’d sent and received during that period. That was when he was admitted to the psychiatric hospital for a month, where he was treated with an anti-psychotic drug called Leponex. He took it for three months and then stopped. The psychiatrist told me he would’ve got worse, but the jealousy started easing, thank goodness. In reality, it got to him more than it got to me. All this jealousy affected my husband really badly, and the PD just seemed to be worsening all the quicker. During meetings with patients and caregivers I tried to talk about it, and other caregivers told their stories too. Patients are unwilling to admit their jealousy, but we discovered it is often closely bound up with Parkinson’s. Doctors stress the fact that these patients are inclined to jealousy even before the onset of the illness. I don’t know if that’s true. Anyway, the psychiatrists suggested I try to come to terms with it all, and I did my best to stay close to him. I even accompanied him on his daily five kilometre walk. We managed a few trips away, and on those occasions his jealousy disappeared completely and he was better, physically too. I didn’t have any more free time. An extra hour would have meant a great deal, and if I’d had that time I would have spent it walking alone in the midst of nature. That would’ve helped with the stress. My husband’s needs were paramount, day and night. That’s why I never go to bed before two in the morning, even now. And if you see a light on in a window somewhere in my town, that’s me reading the story of the prince of Alamut, ready to crush the enemies threatening his fortress. My cat is curled up around my feet, and every now and then I look up and stare at the dark outline of the hills. And then I smile. Advice: Parkinson’s has different effects on different people with Parkinson’s. That’s why a caregiver has to carefully monitor the patient, be patient with him or her, and personalise the treatment. Most importantly, be a partner, not a servant.
Don’t put off till tomorrow what you can do today
There’s a before and an after. Two words – before and after – that turn up often. Before Parkinson’s and after Parkinson’s. I’d prefer it if these words were read exactly for what they are – indicators of time, a corner that had to be turned somewhere down the line during the course of my life, our lives. My name is Roser, I’m sixty-one and I live with my husband in Barcelona. We have two grown up children and four grandchildren – the joys of my life. I used to have a cat too, a beautiful female cat called Taca. Everybody loved her. She was the only one who used to spoil me: she knew when I was unwell or sad, and would immediately snuggle up to me and give me little kisses. No-one realized all this – not even my daughters nor my husband, who had already been diagnosed with Parkinson’s. Taca was an extra member of the family. She knew what was happening to me and she made me happy. We were distraught when she fell ill, and we had to have her put down at the vet’s. I felt so bad that I vowed never to have another pet. Many things have changed over the last twenty-eight years of Parkinson’s, but the relationship between my husband and me has remained the same. What has changed is that we are nearly always together, at home or at the Catalan Parkinson’s Association, which I preside over. My husband’s main concern is to always be with me, so he can relax. And the fact we’re together all day means I am serene as well, and I can keep an eye on him. He does exercises with the speech therapist and the physio, and does his bit for the Association as treasurer. A highly intelligent man, he used to hold an eminent position. When Parkinson’s was first diagnosed he was thirty-seven, and at the beginning he used to hide his arm away Napoleon style! So I thought to myself: if this is what the illness is all about, why worry?! To tell the truth, my reaction had been positive because I didn’t know hardly anything about it. He was still working and I became his chauffeur, taking him to and from work. As time passed, things got trickier though, and his spontaneous hand movements were so violent that he even broke his wrist once. People were always staring at us in restaurants or on the street, and at home we realised that he could still do certain things, he couldn’t do others. Anyway, this didn’t put us off and we started to fight back, doing the rehabilitation work to slow down the symptoms. Thanks to the neurologist, we started to get to know more about Parkinson’s, and it was the same neurologist who introduced us to the Association where we’ve been working for the last twenty years. I enjoy the Association work, helping people to cope, because when you help others you help yourself too. I really like being in touch with people, understanding their needs, helping to solve their problems and reassuring them that they aren’t alone, and taking part in the meetings where we exchange views and experiences. It all helps. Before I used to work in admin for a small company, then I ended up in the Banca Catalana. Today my routine is Parkinson’s, helping my husband and the others, and giving a hand with research. Parkinson’s has certainly meant that I have less time. You can encourage caregivers to dedicate a little time to themselves as much as you want, but I have to say I have no time at all. If I could have an extra hour I wouldn’t do anything. I’d just chill out totally! But as things stand, having an hour to myself is pie in the sky! The only time I have free is early in the morning, but I take advantage of this to go and work out in the gym. After that, I normally go to the Association. I used to have loads of time to dedicate to myself – I did sport and in the afternoon I went to the National Institution of Physical Education, I accompanied my daughters to school, occasionally I went out with my girlfriends, then I went to pick up the girls and it was off to the swimming baths – they were among the top swimmers in Catalonia! I was very happy and things were going well. When my husband was diagnosed with Parkinson’s, the girls were eight and eleven, so they’re used to seeing him the way he is. Nowadays I do almost everything – and that includes taking the car to the mechanic’s – and the stuff I used to do, well, that’s virtually all in the past. But our life hasn’t really changed that much, we’re happy and we try to live a normal life. We enjoy going to the theatre, the cinema, the odd restaurant, with friends too. We often go to the stadium to see Barça, and that’s like a real passion of ours. I was born in Barcelona, it’s the city I love most and I feel at home here: it’s a great city, but it’s also a city on the sea, with a huge natural energy about it, beaches and colourful sunrises and sunsets. I like art and Barcelona offers plenty of that, plus gardens and beautiful architecture. What I really like is being a part of a typically Mediterranean city which, at the same time, has opened its arms to the world. As for the rest, well, we never stop making plans, we love travelling and we’re off as soon as we can go. It’s also nice that our house is still the place where the rest of the family meets up. We still see all our old friends and we even manage to go on holiday together. And when we can, we go to see our grandchildren who live outside Barcelona. After twenty-eight years of illness, I think the effect we have on people is pretty positive. Parkinson’s isn’t all negative: I’ve learned to look at things with a different perspective and put to one side life’s superficialities. And then I’ve met a lot of lovely people. You have to take advantage of the good moments – the moments when one is well. And leave fear behind, of course. We try to live life without thinking about tomorrow. I always say: don’t put off till tomorrow what can be done today. Live the present, don’t think about the future. And to those people who are about to embark on this adventure I say: don’t worry too much. When it happened to us there were very few drugs available, but today there are far more options, and you can find something suited to your needs. Advice: It’s important that the whole family knows what Parkinson’s is so that it can be confronted together.
Protection is required – even from emotions
In the midst of the lush Cher countryside, at the very heart of France, there’s this big fin-de- siècle house, and there’s a man who looks after its old rooms and masonry. Close by, the slate-black Loire river cuts its way through the Berry region. And Bourges, a medieval city with one of the world’s finest Gothic cathedrals, is about 60 kilometres away. Many years have passed since Serge retired. He gets up early and as soon as he’s ready he walks the village lanes among the box hedges, the climbers, the wild herbs and the daisies peeping timidly from cracks in the walls. He doesn’t miss a trick, taking a mental note of everything as he goes. There’s even the odd well-disciplined vineyard, orange trees weighed down with fruit (or bare and spare, depending on the season), and a host of splendid hawthorn bushes. His wife usually waits for him, a little apprehensively: she always used to go with him in the past, not so often now. Hardly ever in fact. Even if he insists that a half hour stroll is important. Up you get, it’s good for you! For Serge the morning walks are a way of collecting his thoughts. He thinks about the trip they’ve just come back from. It had always been a dream of theirs to go to Morocco. He thinks again about the bright colours, the beautifully crafted ceramics, the taste of the food. The ten-day trip had been organized down to the last detail – even where to stop for a glass of water. They’d decided on everything together, and were fully prepared psychologically. “I expected deserts and instead we got huge fields of golden corn. One memorable evening we went to the central square in Marrakech, and there were all these candlelit restaurants and the smell of fried fish and merguez (or spicy sausages) in the air. It was all so new and different. Quite nice.” The trip was the result of something Serge had always known but rarely put into practice. Now it’s become something of a slogan: be happy, get rid of whatever makes you sad, eliminate all the sorrow. He’d understood this while taking care of his wife. The picture in his mind was of a sailing boat riding the waves to avoid going under in a storm, but he didn’t really know why. Maybe it was something to do with the distant past. Serge had grown up in Lille, in the north east of France, almost on the border with Belgium. It was also the birthplace of Charles de Gaulle. In the wintertime, he sometimes went to Calais with his father and they watched the huge, weather-beaten fishing boats returning to port. He never forgot that. Serge had worked for many years as a manager in IT. Calmer waters indeed. He’d never imagined the storm that was about to break. “I knew very little about Parkinson’s before my wife was diagnosed. Then I started reading up on it, and the association helped. You soon realise you aren’t alone. I’m really involved now – a part of it all.” Serge dedicates much of his time to the association that looks after people like his wife. He takes part in meetings all over the country and works for La Page, a journal dealing with the world of Parkinson’s and which comes out every four months. Serge is pretty used to facing up to things head on: when the news is good, it’s time to celebrate; if things take a turn for the worse, a solution is sought immediately. It’s all rather like the sailing boat riding the waves. “My wife asks me a lot about the medical treatment she is undergoing. She wants to know if everything has been done correctly, if there’s anything new on the treatment front, and what kinds of places are available to take her in and treat her daily needs should the occasion arise. More than anything else, she wants to know how her life can be improved, day after day.” A three-hour car journey separates their village (1000 inhabitants) from Paris. Serge goes there from time to time to hear the latest research or go and see an exhibition. If there’s a concert or a play on nearer to home, his wife comes with him. They enjoy going together. “I’ve learned many things while taking care of my wife. Feelings, for example, are absolutely critical: you have to be sensitive, diplomatic and calm, and you’ve got to be there, ready to protect and never to disappoint. You also have to know when to stop, when you’re doing something together, for example, and let the crisis blow over.” Just recently he suggested that it’s quite like looking after a garden. The old house is surrounded by greenery and, in a way, Serge considers it to be his kingdom. When he planted the trees in 1980 they were two metres high; now they’re closer to fifteen. “It’s a fight between me and them. Sometimes I’m forced to take out a few trees to make space, but the real problem lies in choosing which ones. Then there are the flowers: the daffodils and hyacinths are already in bloom, but the tulips are late and only their leaves are out. Next week I’ll be planting the potatoes and the chicory, and in a month’s time it’ll be the dahlias.” The garden has helped him to understand the rhythms of time. He now lives his life according to those rhythms, and his wife’s time is regulated by them too. “The illness has meant that our time is divided up into moments when she’s well and those when things aren’t right. So it’s no longer possible for us to exploit time freely, even if there are moments of respite. I try to work out if the disease has stolen time from us. But then I wonder: is it Parkinson’s or just a part of ageing?” Serge is seventy-seven, and if he had the time he’d take greater care of the garden, and especially the flowers because they are more needful. Every now and then, he and his wife go back to the splendid lines of the poet, E. E. Cummings: … you open always petal by petal as Spring opens (touching skilfully, mysteriously) her first rose. Serge believes that it is precisely those two adverbs – skilfully and mysteriously – that inform his life today. “At our age we aren’t afraid any more, but I have to consider the time when I won’t be able to look after my wife, and find a solution.” Those waves again. The storm. But Serge is calm and collected, just like the old house he looks after without asking for help from painters, electricians, plumbers and carpenters. He does it all. He uses that slightly old-fashioned term, the ‘odd jobs man’. The man who knows what to do, and how to do it. But it’s also about selecting the right bits and pieces from a jumbled pile of alternatives, and using them properly. That’s how he approaches any new challenge. Advice: Identify your objectives: what you expect from today, this week, this year. And fight to achieve them.
Savour the little things when it comes to the great challenges
London’s a fantastic city, and when you see it from on high it’s even better, I swear. Seeing the city from above means something really special to me, not only because you get a unique glimpse of it, no, but because it means I’ve overcome my limits. There are loads of ways of doing it. For example, I’d like to see the city from the top of 30 St. Mary Axe, a building otherwise known as ‘The Gherkin’, a beautiful 180 metre high skyscraper designed by the famous architect Norman Foster. To get to the top there are 1,037 steps and I want to climb all of them, one by one! I want to get through nine ‘ordeals’ similar to this – nine tests of resistance that would put the most highly trained athlete through the wringer, let alone someone with all the neurological problems I’ve got! I’d like the tests to be a bit different from the usual. What’s more, I want to do a ‘Quadrathlon’ - a combination of four tests: three hours up and down the steps, then three hours on the rowing machine followed by a three hour walk in shallow water and finishing up with a three hour spinning session. A total of twelve hours of non-stop exercise. Another idea I have sounds a bit bizarre, but only at first. I want to ring a church bell for three or four hours – that’s about 10,000 bongs! All very well of course, as long as no-one in the vicinity complains that I’m breaking their eardrums! Then I want to go up and down the steps of the English baroque masterpiece St. Paul’s Cathedral. Twenty five times. Now perhaps you understand why I like having people call me The Phenomenon! I’m fifty-one years old and up until a couple of years ago I was a tax inspector, but now I’ve retired. I live together with my wife and daughter in Kent, a county southeast of London. It’s a nice place, close to the city but immersed in the countryside, and not too far from the coast, which is beautiful. Retirement doesn’t mean you have fewer things to do – quite the opposite! Since stopping work, it feels like I’ve got more things to do, and they’re almost all pleasant. I’ve always enjoyed sport, for instance: I love football (even if I no longer go to the stadium) and I try never to miss a match on the box. I also love wildlife documentaries, and I’m very fond of ’80s music. I’ve been ill for ten years now. I still remember the exact date of the diagnosis: 23rd December 2004. The symptoms had only made themselves felt a couple of months earlier: I’d been slowing down and my limbs were all stiff. My first reaction was one of disbelief, no surprise there. I was shocked. I thought I’d reached the end, seriously, and I plunged into the deepest of depressions. It was difficult for me to own up to the fact I was ill, and I went into denial about Parkinson’s. My friends couldn’t believe it either. Then I understood that the diagnosis has to be accepted, and that if you do accept it, life can once again be worth living. Since that time I feel as if I’ve been catapulted into a long journey of discovery, but not alone. It’s not as if I’m sailing across the ocean in a small yacht. No. I like to share whatever I learn every day with others. I enjoy motivating other people and instilling hope. I’m always trying to drum up new ideas, something different, creative even, so I can share information with others, listening to their experiences and treasuring my own. I’m currently in a phase of promoting get-togethers, holding conferences and gathering funds for research. I’m particularly interested in the sciences and human biology. One of the projects I’m strongly supporting is that of a university professor who’s working on ‘Circadian Rhythms’. This is basically our biological clock, the internal biological rhythm that changes and is transformed over the course of 24 hours. Basically, it’s all about the cycle of light and dark. To tell the truth, we’ve only just started to understand something about all this. It’s a really fascinating area of study. Another project I’m involved in is at a more advanced stage and it concerns sleep. The quality of our life depends heavily on sleep, and fitful sleeping patterns can make us miserable. Nutrition is important as well, and I’m researching this field too. My most difficult moments occur on waking up in the morning and when I go to bed. That’s why I’m sure sleeping well is so important. Somehow we have to ensure our lives are comfortable and predictable because if a crisis takes us by surprise, that spells trouble! Stiffness is my main problem, and it can be difficult to concentrate for more than two hours at a time. Wherever I am, if I feel an attack coming on I try as best I can not to get bogged down thinking about my stiffness. What I mean is, I try to let my mind wander. That’s why routine is a kind of panacea: nothing unpredictable, or at least as little as possible. Who said routine is boring? Regularity. Precise commitments. Every day at the same time. Usually I manage two extreme tests a year, and for the rest of the time I train to stay fit, keep healthy and minimise the disease’s progression. I go to the gym five days a week: I meet up with a group of friends who work out with me. We have a chat and a laugh. My wife does gymnastics five or six times a week too, and as she’s retired she can take me and bring me back home. And she still finds the time to do some great cooking, and does the housework. So she’s something of a phenomenon too! Of course my horizons have changed: for example, I can’t do marathons any more or go on long journeys. And it’s for this reason that my challenges have transformed my perception of time: my short term aims allow me to take more control over time, and I use it to do the things I like, without feeling that it’s being wasted. True, the illness does interfere with my daily commitments, and that’s why it’s important to enjoy the little things in life to the full. Above all else, it’s essential to stay upbeat: positive thinking enables you to get as much as you can out of a life that consists of so many small pleasures. Advice: Don’t be afraid of routine to maintain a regular sleeping cycle: sleeping properly is so, so important.
Think about Fighting, not Winning
In springtime you can see them riding their Vespa along one of Milan’s countrified canal-side roads. Or you might catch a glimpse of them under one of those summery sapphire-blue skies that stretches all the way from Greece to Turkey, disembarking – first Hans and then Tilda, who grips his hand tightly – in one of those little ports dotted around the Sporades. Tilda and Hans adore that sky. And they adore the sea. They love mucking about on their boat for three months a year, from the end of June to September. In the winter the boat drops and leaves its anchors in Rhodes, and in the summertime it moors in Simi where, for more than twenty years, the house they took three years to do up has put up three children, six grandchildren and all the friends who’ve upped sticks to go and visit them. Tilde has always loved boats, no more so than now. She used to go sailing with her dad on Lake Maggiore, but that wasn’t always fun. “He would leave me the tiller as soon as the wind went down. That was the most difficult and boring bit!” When Hans turned up, things changed. “The boat was one of our big projects. After the little dinghies on the roof of the car we bought a twenty-footer and sailed from Elba all the way to Turkey over the course of four summers.” The first port of call was Milazzo, then the Ionian Islands, the Peloponnese and finally the Turkish coast. The blue of the sea, the whitewashed houses, the speckled greens of Mediterranean scrubland and olive trees: these are the colours that tell the story of Tilda and Hans. Outside the windows of a cosy Milanese flat, packed with musical instruments, is a tiny garden whose green tones – metallic in winter – enter the interior, transforming the other colours. Tilde is sixty-six and, like her seventy-year-old husband, she worked as a teacher up until retirement age: her subjects were law and economics, his was geography. Both worked in experimental schools. “You were free to do what you wanted in schools like that.” Freedom. A concept whose confines are forever indefinable for Tilda. Hence the extra commitments: voluntary work, for example, starting off with lessons outside of school hours; then the prison inmates, teaching them about health and living together. “I’ve always thought of voluntary work as an exchange, not as something along the lines of: Here I am! Now I can help you! At school I always thought: now what can I learn from my students? For the last five years or so I’ve been assisting a teacher who works with foreign mothers: especially Egyptian and Tunisian, but Japanese too. It’s great – you learn so much. Recently they showed us how to wear the veil!” Tilda has had Parkinson’s for seven years, but she’s known about it for five. She’s always been a bit of a piano player and when her arm began to feel funny and her fingers started playing havoc with the keys, she knew something was up. “And my voice, so low … I thought: what a relief, I won’t have to raise my voice any more with my students! To tell you the truth, I could hardly make myself heard. So I started learning the mouth-organ. They said it helps the facial muscles and it seems to have worked. I got my voice back.” Hans is always by her side and he joined in too, but he chose the accordion. “I try,” he laughs, and looks at his wife. “Tilda is very down-to-earth. She’s like: Right, have I got Parkinson’s? OK, I’ve got to do this, this and this. Not: Omigod! Now what’ll happen to me?” “Hans is right. I’m very pragmatic. Must be because of my Lutheran upbringing … A few days ago it was snowing but I decided to pop along to our association all the same. The hall was practically empty apart from my physiotherapist, who also teaches Pilates. On seeing me, he exclaimed: “Ha, no way was Tilda going to stay at home!” Two neurologists, the swimming pool with Hans and a group of friends, Pilates, physiotherapy twice a month, gymnastics every morning. Then the mouth-organ and the piano, a vertical model that towers above everything in the music room, a small conservatory overlooking the terrace, where Hans’s concertina can also be seen. Tilda fills her life with things to do, like a squirrel hoarding nuts before the onset of winter; time dilates like a travelling bag waiting to be packed before a holiday. If you peek inside her bag you’ll nearly always find a new project or a new desire. “Of course, I’m not the woman I was energy-wise, but there’s a plus side: for example, I’d been on the verge of giving up the piano, but I feel like banging out a few chords again. I’ve even taken up another instrument. So, I’m understanding more where I’m at these days: I used to do gymnastics without really thinking about what I was up to, now I’m more aware.” “It’s good when people point things out to you. Hans knows that. I’ve told him I prefer him to yank me by the arm rather than have him tell me off when I’m not standing upright! If you start dressing me down I’ll tell you where to go – that’s not stimulating at all! I mean, you have to shake things up a bit – the activities, the treatments, whatever – and transform them into something you like, not something that impinges on your time.” Tilda sees time as having to be invented. She thinks it's useful to turn things upside down. With an extra hour everything would become a pastime - even the treatment and the work-outs would be transformed into something nice, enjoyable. Apropos of time: in a few weeks, after Easter, Tilda and Hans will be off to Greece again to get a taste of what’s to come this summer. They want to visit the new Acropolis Museum in Athens. “I’ve heard there’s a model of the rebuilt Parthenon inside, but you can also see the real one outside at the same time. It sounds great.” But they have to see if the boat is OK, too. They’ve had their latest boat for three years, and it’s their biggest ever: it measures thirty-six feet or eleven metres. Big enough to sail across the ocean. “This year it looks like we’ll only have our grandchildren, but that’s fine,” Tilda laughs. “Last year my son even brought his dog along! One of my grandchildren is now fourteen and prefers to stay on the island. He’s got a bunch of friends, so perhaps we’ll be at home more than usual.” “You’d never get off the boat if you had your way, would you?” Hans looks at her and takes her hand. “Well, sometimes I’m afraid. Do you remember the weather two years ago? There’s no fooling around with the Cyclades, sometimes the wind is fierce. We had a friend who works on the boats who helped us. I remember he gave my hands such a beautiful massage – they’d suddenly frozen up!” Then Tilda adds: “There’s a gym activity I do every day. It’s as if I was landing punches, and when I do it, I repeat every time: Damned Parkinson’s! I’ve never been the competitive type, but there has to be a bit of a challenge in there somewhere. Alas, it’s impossible to win the contest. But I can’t allow him the freedom to block my way. Absolutely not!” Advice: ensure you’re surrounded by a network of specialists and friends, and don’t reject the observation of those close to us to realize how we have changed physically and in terms of our posture.
Things do work out over time, but you’ve got to take it by the scruff of the neck
Time needs hands To make its voice heard, With its tick And its tock It measures out the days, Knowing that Facts leave their mark, And feelings, dreams. I write poetry. I love poetry. I called this poem Time, Marks and Dreams. I’ve worked out a new relationship with time. It changes from day to day and can never be taken for granted. I must admit that I’ve always tried to rule over time (presumptuous of me!), filling its empty spaces and making sure I always have plenty to do. When Parkinson came along I realized that what I used to do before – getting washed or dressed for example – could still be accomplished, but it would just take a little more time. I could control that. I invented some pretty sophisticated stratagems and, for a while, I was encouraged to believe victory would be mine. More fool me! Time can wait, of course, because it has time on its hands, and before long I was eating humble pie: you can steal a minute or two, or even an hour, from lots of single moments, but it won’t be forever. At first I woke up before the alarm went off in order to make life’s little obligations less onerous, but the limits of this soon became evident, and the logic of things prevailed: that craving urgency we associate with youth – the necessity to get things done – fell by the wayside. A more difficult path, involving an acceptance of my illness, had to be sought if I were to become truly aware of the limits it imposed. Time would take no prisoners as I proceeded down this winding path: it would ignore my desires and out-trick me at will. What I wanted from life and what I could actually have were two different things and, with this in mind, I learned to await the effects of the daily dose of L-Dopa that obliges you to recognize the limits imposed by the illness. No point warming up for a fight if Desire leaves its boxing gloves back at the gym. It had become a game, a serious sort of game geared to revealing the maturity of all those who, in their wisdom, understand that sacrifices must be made. That’s why I wouldn’t do anything different from what I’m doing now, even if I had an extra hour. That means measuring up to Him every day, and trying to fill my time with the usual commitments. Parkinson’s gradually gets worse with the passing of time, so your relationship with the future is never easy. Of course I’m afraid that one day I will no longer be self-sufficient. I prefer to substitute the idea of ‘Future’ with something more concrete, more immediate. That’s what projects are for. My name is Tony, I’m fifty-five years old and I live in Messina, in Sicily, with my wife and three daughters. For many years I worked as a chemist, and then as a scientific representative in the field of – wait for it! – neurology. I’ve had Parkinson’s for fifteen years now. My left hand trembled slightly and my family convinced me to go and see a doctor, who was also a friend. The next day I was at the neurologist’s, and two months later I had my diagnosis. I have to admit that at the beginning I underestimated it all. I remember telling a dear friend of mine whose father had Parkinson’s, and I’ll never forget her reaction. She turned away from me crying, and said: “No, not you!” At the start I had no trouble accepting the diagnosis, but I went into a state of what I can only call ‘precariousness’. The biggest problem for me is the freezing up of the muscles, in the morning when I awake and straight after lunch. As a remedy I take a tablet, sit down in my armchair and read. I try not to think about it. Sometimes I shine a torch in front of me and stare at the light, or I count the number of steps I can manage at that particular time. This method helps me to feel more secure in my movements, even if my posture isn’t exactly natural because my movements have been ‘thought out’ or ‘pondered upon’. Then I breathe deeply and consider the importance of having good intentions: where there’s a will there’s a way, right? If I’m at home, everything is much easier because you don’t feel constricted in your movements. But when I’m out, it’s a different story. You feel people are looking at you, checking up on you, judging you; it’s like being stripped naked and assessed in terms of your appearance, not for what you really are. Parkinson’s interferes with your social life, or perhaps I should say with the freedom of your social life, which ends up being filtered by a drug or a symptom. But you can’t let it get the better of you, and that’s where your passions and hobbies come into play. I enjoy working with wood, and I’d like to write again. Parkinson’s has devastated my handwriting – even I can’t read it any more! I always liked writing by hand, choosing the paper and the fountain pen, and giving life to new facts and stories. Writing. The computer isn’t the same thing. It doesn’t have that lovely smell of paper! I love reading, and I don’t just write poetry. My wife helps me to write cabaret shows that I put on stage – let fantasy fly, I say! At present we’re working on a show called ‘Miss/Mister Vibrazioni’, and it’s all about Parkinson’s. I’m a member of GRATA Parko, a theatre group centred around Parkinson’s. For the past year a professional actress has been teaching us the basics of acting, and the show will consist of a series of ‘pictures’ connected to each other in such a way as to create a scenic discussion. Each picture deals with a really important aspect of our lives: the diagnosis, the cage (our imprisoned body), the symptoms, the forms of support, the irony and our relationship with drugs and creativity. The show should be ready for next June. It isn’t a depressing kind of show. In fact there’s a lot of humour at our own expense! Humour is fundamental: it always helps and provides a key to understanding reality. All people with Parkinson’s have – and will have – their own story, their own unique form of development. Interesting concept that! Perhaps I’ll write a poem about it… Advice: look after your body, both from an intellectual and a physical point of view. Look for new interests, cultivate those that are old, and remember: today is already tomorrow.
Forward to the last marathon, without looking back
Lucky the pub is close to home. I’d hate it if I couldn’t go there when the whim takes me. Not that I’m addicted or anything, but a pint down the local with a few friends after work never did any harm. You might see a match on the telly as well, and celebrate in company, if you win. I’m talking about rugby of course, not football. Rugby is my passion. I love most sports, and I do sport myself. Always have done. I remember that it was one of the first things I thought of when I was diagnosed with Parkinson’s twenty-seven years ago: I suppose that’s the end of my sporting career then? You must be joking! I’m now seventy-three and, God willing, I’m still doing sport. Running, in particular. I also go to the gym and work out. We live in Romford, north London, and there are loads of great places where you can go running. I like living here. We’ve got a lovely garden and a little dog who loves scampering about. My wife, Janette, has retired as well. She used to be a seamstress, and very good she was at it, too. She still enjoys doing a bit of sewing and dressmaking, when she has time of course. I’ve given her quite a bit extra to do, what with my personal needs and everything. She doesn’t really have that much free time at all. I used to work in the stock market in the City. Very stressful I suppose, but it was a good job, all told. I always liked getting away from the centre once the deals had all been wound up for the day. There’s none of that confusion here, the noise and the traffic. But I liked my job in town and if it hadn’t been for Parkinson’s I wouldn’t have left it quite so early. And then, well, you know what it’s like: no-one employs a fifty-year-old with Parkinson’s. It doesn’t happen very often anyway. It was a bit of a nuisance at the beginning, Parkinson’s. My left arm started trembling, but I didn’t really take much notice, and it took a full fifteen months before I got the diagnosis. When the moment came I was ready for it: I’d got used to the idea of living with it, and it wasn’t hard to accept. Friends and acquaintances reacted well and were very understanding. But Janette took it badly. She was devastated by the news. She was afraid, and I think she still is. You never know what’s around the corner. To her way of thinking there’s a danger that the future will be even more demanding than today. Life in general does become more difficult with Parkinson’s. Much slower. But she’s strong willed and she’s always there to give me courage when needed. Sometimes I’m afraid too, and courage is hard to find. I fear becoming a prisoner in my own home, not being able to go to the gym or going for a drink down the pub. Under my own steam, I mean. Everything considered, I’ve been lucky: living for twenty-seven years with the illness could have been much worse. At times it’s the little things that are a nuisance. I remember that it all started with my not being able to do up the top button of my shirt. I now have problems with saliva, and I feel I’ve got smaller! Is that possible? I ask myself: have I lost a few inches in height because I’m getting older or because of Parkinson’s? It’s not the only thing that has been taken away. Sometimes I feel my wife finds me less attractive… Anyway, there’s always plenty to do: Janette and I have four children and we’re grandparents to seven grandchildren. Whatever spare time I have is dedicated mostly to the person with Parkinson’s Association, where I work as a volunteer. The centre is in Brentwood, a town not far from here, in Essex. I used to read a lot but now I have difficulty concentrating and when I realize I’ve been reading the same page four times over, I put the book down and do a Sudoku! At least I don’t lose my concentration with that, don’t ask me why. Maybe numbers have a different kind of power over the mind compared to words? Anyway, I don’t have that much time, and if I had an hour extra every day I’d take a double portion of all these things. Parkinson’s takes its toll too. There’s no particular moment in the day when it makes itself felt, but when it does raise its ugly head, I go running. There’s no secret involved: all you do is place one foot in front of the other, like anyone else. And then off you go. Running is a completely natural activity for me. Even with Parkinson’s. Actually, even more so. Physical exercise is the best medicine in the world. Running has always been my passion – more than rugby or any other sport. Over the years I’ve completed eighteen marathons, and I remember them all, each and every one, and I loved them all from start to finish. There’s something special about the marathon, and it stays with you when all the running and the race and everything is over. The race itself is fantastic too, running in the middle of all those people, and getting to know them as well. But it’s a solitary thing too, the race. You’re alone with your heartbeat, your shoes, your road and your bends in the road, the objectives you set yourself as you run, the relationship you establish with your body, and your ability to resist. Running even makes you look at the place where you live with a different pair of eyes: the paths become familiar and things you didn’t notice beforehand when running now come into your field of vision. It’s actually quite fun. It would be awful if I couldn’t run any more. Especially now, because in a certain way the relationship you have with your body is brought into question. It’s comforting to know I can still make it. Unfortunately it looks like I’m soon going to have to have an operation on my foot. That could be an issue, a real concern. Not so much the operation as what will happen afterwards. I don’t have all these projects for the future, but I would like to run my last marathon. That’s something I ardently wish. You see, I like to think that Parkinson’s isn’t really such a big deal, and that it hasn’t altered my way of living. Provided I’m not required to carry more than one drink back from the bar when I’m down the pub, that is! Advice: I’d like to suggest what my wife says: always try to be as independent as possible. Don’t spoil us! Don’t pamper us! Let’s play it cool and try as hard as possible to lead a normal life.