PD Day 2016: today we are taking our project a step forward, by becoming more visual: we have made 12 videos that tell stories of courage and reaction to the condition. Each video focuses on a specific aspect of living with Parkinson’s, condensed in a simple keyword.
A ‘Parkinson’s story’ can also be an engaging story, and, why not, a smart one: if a picture is ‘worth a thousand words’, as they say, a moving image can be even more thrilling, and can help cultivate and increase awareness about Parkinson’s. The first keyword is #Companionship, to be followed by new keywords every 15 days throughout the upcoming months. Stay tuned!

#bepatient

People with #Parkinsons have to make their own path. #bepatient do not force time

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  • THE BICYCLE
    by Toni
    My father was a mechanic and I became an engineer...


  • GRANDMA
    by Emma
    I have an elderly mother who needs a great deal of care...


  • CHANGING THE CLOCKS
    by Antoine
    I have always hated putting the clocks forward...


  • IT’S TOMORROW!
    by Isabel
    My extra hour is tomorrow – from 2 to 3 pm...

  • THE BICYCLE
    by Toni
    My father was a mechanic and I became an engineer. I work for a large semiconductor company near Munich. I spend all day at the computer but repairing old bicycles is my true love. I get them from the scrap yard or from friends. Then I seek out the parts, one by one, until I manage to put them back together in perfect working order. This passion is definitely a gift from my father who couldn’t bear to see something broken and not fix it. Today, I’ll finish my best bicycle. A child’s bike that I have modified, adding special wheels and a sort of rear carriage. It’s a gift for my youngest son Oscar. Oscar was born with a knee malformation. He walks with braces and it previously seemed impossible for him to ride a bicycle. But I didn’t give up and tried lots of solutions until I found the right one. It only needs one last coat of paint and I’ll give it to him all wrapped up tomorrow, his 6th birthday. The hours I’ve spent grinding and welding in my garage-workshop have been the best in recent times.
    GRANDMA
    by Emma
    I have an elderly mother who needs a great deal of care. When she started going downhill, I had to decide whether to have her live at home with us and it wasn’t easy. I was torn between my love and the need to provide her with the proper support. I was also afraid of stealing time from my children but it was they who insisted. So, “grandma” has been with living us for a couple of months now. She has her own bed, her own bedroom and her own care. A nurse comes in regularly for her medication. Suddenly, the whole family has found itself living to her pace – that of her off days when she is tired and irritable, and that of her good days, when she chats with everyone, plays cards with the children or asks for help with the crossword (although she’s far better at it than they are!). We’ve also learnt to enjoy the good times, living them to the full, and not to fret too much during the difficult ones. Grandma is teaching us something important!
    CHANGING THE CLOCKS
    by Antoine
    I have always hated putting the clocks forward. It’s as if they were stealing an hour’s sleep from me during the night. It was there in the evening and then I get up in the morning with bags under my eyes. I know that, in theory, I could get up an hour later but I never do. I end up waking at the usual time and feeling dazed until the evening. By contrast, I can’t wait for the clocks to go back. That evening in late summer when I know I’ll go to bed and someone will give me an extra 60 minutes. It feels like being a child again, when I lost my milk teeth and woke up knowing the tooth fairy had been and left me some money. Only now I’m grown up and I’m shorter on time than money. I start savouring that “gifted hour” in the afternoon. I do things slowly, taking my time and thinking “hey, it’s an hour earlier.” I have dinner when it’s already dark, then go out with my friends and drag it out. If anyone yawns and says “It’s late”, I tell them off and remind them that we have plenty of time this evening. I realise that we often do everything in a hurry, eager to enjoy the moment whereas it’s actually like taking a last puff on a cigarette when you see the bus coming. Instead, knowing I have a “free” hour ahead on that late summer’s evening, I fully savour the day’s little things.
    IT’S TOMORROW!
    by Isabel
    My extra hour is tomorrow – from 2 to 3 pm. Whatever happens, I’m going running in the park as soon as I finish my shift tomorrow. I’ve always been lazy, taking it easy you might say, and well maybe I had let myself go a little. I used to watch my friends going to the gym or out jogging a little suspiciously, as if they didn’t really love themselves. I wondered what they found in tiring themselves out. All that tight gear that looks like diving suits! Disgusting. As if – I told myself – having a demanding job isn’t enough. I’m a nurse and I work shifts… I think I slog enough. It was Claudia who convinced me. She can be really persistent when she wants. Let’s be honest, she’s like a hammer. I had to promise I would go with her and one morning I did. It was freezing cold and I was done in after a couple of minutes. She called me lazybones and I hung on, dreaming of a shower and some clean clothes. Once home, though, it felt like my body was saying thank you. I felt lighter and cheerful. The next day, I ignored my sore legs and went again, then again the following week. Now, this is my extra hour. I switch off, put some music on and get my legs going. Hey world, see you in an hour’s time!
    A HOTCHPOTCH OF MATHS
    by Max
    To be honest, I’ve never liked maths. Actually, I really hate it and it’s not my fault if I’m good at it. I don’t even study that much but it comes easy to me. It was like that at junior-high school and is the same now I’m at senior-high. I’m always there with the best in the class. I don’t even like them… It’s a bummer being good at a subject you don’t even like! You can imagine how I felt when the teacher asked if – as she puts it in her old-fashioned way – “I could give my less fortunate classmate Matteo a hand.” “Just an hour a week”, said the teacher. It’s all right for her but I’m the one who has to tutor him. I had to agree, of course. Mother and teacher joined forces and even the headmistress stepped in. So, I became a tutor for this less-fortunate boy, except that Matteo isn’t “less fortunate”, he is hopeless. I have to explain everything 2000 times before he gets it. The first times I went, it was reluctantly and out of a sense duty. It was harder than I had expected. It’s one thing knowing something but having to explain it is totally different. At least, Matteo listens to the same music as me and he likes the same TV series. After a few lessons, we got into the habit of finishing up by watching an episode of The Walking Dead. He got a respectable 6+ in the first class test and that pleased us both. I gradually realised I was going to his house quite happily. An hour’s lesson isn’t so bad, quite the reverse. It’s starting to be a commitment I’m glad to keep. It’s rewarding.
    LATER YEARS
    by Theodoros
    You reach an age when – let’s be honest – your body isn’t really on your side. It started with my sight. I would screw up my eyes to read and then tried moving the book away but it would have taken arms two metres long to read it. “Glasses” said the optometrist. So I started wearing glasses, more than one pair of course because you being with one pair for reading, then comes another pair for the middle distance and finally a pair to see far away. “It’s not so bad,” I told myself, “everybody wears glasses.” A few months later, it was my blood pressure. “It’s too high.” said the doctor. “Diet, sport and a pill every night to keep it under control.” “It’s not so bad,” I told myself, “everyone my age has blood-pressure problems.” When I felt a pain in my back, I didn’t fret. “What about this?” I asked the doctor. “Old age.” he replied. Tests, a pill and sport but not the sport that lowers your blood pressure, oh no! The one that lowers your blood pressure is bad for your back and the one that is good for your back does nothing for your blood pressure. At a certain age, you really have to earn your leisure time – when you are feeling well with no aches, no insomnia and no nostalgia for your youth. I do it. I follow all the recommendations, take all my medication at the right times and then everything feels on an even keel, without saying anything to my wife, I get my bicycle out and go for a ride along some country roads close to home. There’s dust, which is bad for your eyes. There are potholes, which jolt your back, and sometimes it’s windy, which is not good for your lungs. But I’m happy. I go home feeling better and it’s as if my seasonal ills weren’t so bad after all.
    THE RALLY-MOTHER
    by Delmar
    My extra hour is the one I spend with my son Tommaso after going to collect him from nursery school. I know it may seem obvious and it’s what every mother feels but it’s a special moment for me. Sometimes more so than when I put him to bed or when he comes and wakes us up in the big bed on Sundays. My extra hour is the one when he gets out of school. I come straight from work and know I have to finish on time so that he doesn’t have to wait, making me look like a bad mother to the teacher. The last half hour is usually like competing in a rally, with sudden demands from my boss and phone calls from clients who seem to have conspired to call when I’ve already got my coat on. Then I race down the corridor to the door. My car keys? On my desk! I can just see them laughing at me. Another race with my heels ringing out on the floor and I’m out of breath. Then comes the battle with the traffic and an armada of cars ganging up to make me late. I always treble park (a mother’s acquired right). Swimming bag, a snack and handbag in my other hand, I reach the entrance looking like Mary Poppins. Then comes the magic. Time slows down as I intentionally do everything without hurrying. I don’t even mind when Tommaso’s jacket buttons won’t do up; quite the reverse, it’s an opportunity to play a game with him. It’s like closing the circle and starting the day all over again. I walk slowly towards the car, asking him to tell me everything he’s done. I drive slowly, turning my head frequently. It must be ten minutes’ drive from school to the swimming pool but it feels like an hour.
    AFTER WORK
    by Silvano
    I’m 43 and I’ve been a doctor in the department of oncology of a big hospital for more than ten years. It’s not an easy job and it’s not one you get used to. You never grow accustomed to the pain and I never get used to defeat. Losing the battle against nature and the absurdity of certain illnesses is my idea of defeat. Defeat is when I go home knowing that a patient I’ve been treating for some time won’t be there the next day when I go back, or when I am lost for words speaking to someone who’s suffering. But, no, perhaps it’s not like that. Sometimes silence speaks louder than empty words, even for a doctor. Sometimes just finding treatment that will give a sick person an hour’s relief is a victory in itself, giving them an extra hour. The other evening, I went back to Thomas’ room. He’s a boy in the final stages of bone cancer. I had finished my shift and already prescribed his treatment for the night and the following day. I could have gone home but something made me go into his room. The other patient was asleep and Thomas was breathing slowly, aided by the oxygen mask. I sat on the chair beside the bed, where I’d often seen his mother and sister sitting. I sat there in silence without doing anything, nothing that my studies had taught me. I sat there just like any visitor, as a man and not as a doctor. Half an hour went by and a nurse came round for a routine check. She apologised and left as soon as she saw me. I wanted to tell her to stay. Another half hour went by in silence as Thomas slept. My being there was pointless perhaps. I stood up and left the room after an hour, thinking that the time spent sitting in silence beside him had been my extra hour on a difficult day. Something added to my life.

  • A HOTCHPOTCH OF MATHS
    by Max
    To be honest, I’ve never liked maths...


  • LATER YEARS
    by Theodoros
    You reach an age when – let’s be honest – your body isn’t really on your side...


  • THE RALLY-MOTHER
    by Delmar
    My extra hour is the one I spend with my son Tommaso after going to collect him from nursery school...


  • AFTER WORK
    by Silvano
    I’m 43 and I’ve been a doctor in the department of oncology of a big hospital for more than ten years...