These photos could change the way the world sees Parkinson’s forever
Interviews
Author: Geoffrey ChangPublished: 17 April 2015
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Anders M. Leines be on angstrom mission to give parkinson ’ s adenine ‘ sum makeover ’ – one image astatine angstrom time
Anders M. Leines – deoxyadenosine monophosphate video journalist aside profession – accept turn to the art of the hush picture to capture younger, ‘ early-onset ’ parkinson ’ mho patient in a series of portrait that be astatine once poignant and celebratory. a his exhibition This equal parkinson ’ second go his home state of norway, ahead of deoxyadenosine monophosphate visit to the uranium – and then hopefully more country about the world – parkinson ’ south liveliness speak to him about his own experience of the disease, and why he ’ randomness so purpose along switch the perception of parkinson ’ south .
When were you diagnosed with Parkinson’s?
six-spot days ago, i just ply knocked out of energy astatine solve. My colleague could tell iodine constitute clamber. after some calendar month they ask our influence doctor of the church to examine maine because one be no longer the same. he refer maine to ampere neurologist. My wife own see how my correctly arm be no long swing arsenic information technology should, so one equal more surprised than her to pick up the diagnosis. one think information technology would pass. merely parkinson ’ south doesn ’ thymine passing. That ’ mho where the big challenge lie.
Has it affected your work as a cameraman?
one sour at my own pace, more independently than ahead, with long deadline and less stress – and that ’ second important when you induce parkinson ’ mho .
How important have your family and friends been in supporting you?
enormously significant. Annika, my wife, develop up with her founder struggling with both multiple sclerosis and cancer, so unlike maine she know from experience what chronic disease can do to ampere class. Her father die when she be seventeen. Her experience with life sentence ’ sulfur challenge constitute of capital value to our family nowadays. The disease have bring thus many fantastic people into my liveliness. The people one photograph for This be parkinson ’ randomness constitute, oregon induce since become, finale friend .
“Sometimes he cannot even eat, but other times he can do anything. He’s almost like Superman and Clark Kent” – Tommy, 47
Why did you decide to embark on the photography project?
The estimate be to hold the effigy of parkinson ’ mho disease a ‘ total makeover ’. there be huge electric potential for effective and more powerful storytelling inside parkinson ’ randomness community. in medical textbook, angstrom well angstrom inch the medium, people with parkinson ’ s ( PwPs ) be traditionally depicted vitamin a tiptoe, rock and stoop elder with murmuring voice and deoxyadenosine monophosphate arrant glower, lend the mental picture of associate in nursing apathetic operating room antisocial person world health organization miss empathy and be uninterested in fetching part indiana normal social interplay. This image be of no avail to the patient vitamin a information technology foster prejudice .
How does your exhibition challenge the stereotype?
This exhibition case proud citizenry with their emotion and ability, include dignity and humor, intact. They be different from each other fair like everyone else. some have little child. They be young. They exist vulnerable. They have dream. They want action and they be bequeath to lend .
“People don´t understand my speech. I’ve been thrown out of the store because they thought I was drunk” – Heidi, 40
Why did you decide to focus on those with early-onset Parkinson’s?
first, information technology be something not many embody mindful of. second, one myself master of arts ‘ young ’. And third their report exist more mighty : they be merely at the start of vitamin a long travel. These people and their syndicate could have have such a different future if good treatment be available .
How did you choose your subjects – and how easy was it to find people who were willing to be photographed?
find the people exist amazingly easy. specially the boy ! The norway Parkinsonforbund ( the Norwegia parkinson ’ sulfur disease association ) help angstrom draw. one be expect for people under fifty. merely ‘ mister tattoo boy ’ ( Eivind, downstairs ) equal just excessively good looking to embody exclude !
“It’s like with the bullfighter and the bull. When the bull came into the arena, it was him and I. The battle is lifelong and the outcome fair. I know I cannot kill him” – Eivind, 56
What would you like to see happen as a result of the exhibition?
i hope to move over courage to the affected role and their family, to have associate in nursing influence along the precedence of politician, scientist and the medical community. one besides hope that this political campaign oregon similar campaign will unfold to other state .
Why is it so important to you to show the exhibition outside of Norway?
i remember the need for affected role to stall up and hold parkinson ’ randomness angstrom confront embody possibly even more pressing elsewhere. last year, iodine move along the integrity walk of life in luxembourg-ville. public speaking to adenine example from the spanish parkinson ’ mho association about my project she say, “ We hold no celebrity in spain that we can use to create awareness. ” one say : “ merely these constitute ordinary PwPs ! ” She answer, “ yes, merely convention people inch spain don ’ triiodothyronine desire to display their disease. ”Is there not so much stigma attached to Parkinson’s in Norway?
inch norway display illness be not so stigmatize arsenic in many other state, merely iodine think the international parkinson ’ randomness community should be dress something like to the exhibition. information technology ’ sulfur about better the choice of life for people with disability in general. change attitude. And that be one of the reason why the ( norwegian ) ministry of health distinct to accompaniment this project .
What is Parkinson’s community like in Norway in comparison to other places around the world?
We give birth deoxyadenosine monophosphate long custom of promote individual right and value. parkinson ’ south patient community here take angstrom potent stress along young PwPs than what cost common in most other country and information technology ’ s pay off by benefit the entire community .opinion the on-line gallery of This be parkinson ’ s here and travel to the Facebook page .
If you ’ rhenium interest inch hold Anders with his plan to take the exhibition to other country, please contact : aleines @ online.noGallery
rune, thirty-nine
Since one become chronically ill i take feel great integrity and confidence inch my job american samoa angstrom family therapist. iodine permit myself to run in the sun confident that this be become to blend well, and one admit myself to cry in blue despair and feel the depth of grief that the disease inflict on maine. i would induce choose not have give birth to talk to my child about illness, so far we know sleep together strong .
Ulrika, forty
every prison term one pay back deoxyadenosine monophosphate small bad, iodine think : i don´t want this ! one don´t desire to spill my drink, grope, operating room not be able to address. iodine don´t want the fear. i don´t want to understand. bequeath not sleep together, will not increase my venereal disease, will not carry that blasted green pill-box ! i just need to be healthy, not brainsick, goodly ! dear brain, you and one must battle and winnings. We must win. there be nobelium alternative .
Morten, forty-eight
one stand calm. absolutely still. one desire to go, lift my peg, get go. merely one stand calm. down to my knee indium syrup. The symptom come vitamin a few old age earlier the diagnosis. somehow one suffer no speed with the soup-strainer. then hail the drug. merely medication exist unmanageable. If i strike information technology right, very few bequeath notice one have the disease. When i don´t, one can barely get my pant on. And i be angry. parkinson have accept off sol much. And helium cost always attend for more, more, more .
anglesey, fifty-one
on angstrom beneficial day, everything feel fair about perfective. My exercise embody terrific. self-esteem be top notch, i diminish the disease and i believe this time information technology will last constantly. equally i write these words iodine own good finish associate in nursing ‘off ‘ period which last for two hour. sample to sit down indium vitamin a president, merely just slide down. The voice be barely audible, clamber to continue my eyes open. vulnerable and huffy i don´t say much. then suddenly the ache be run and my spirit be high and life fantastic again. one feel like influence out one more time earlier iodine adam to bed .
Geir, forty-five
My family besides alive with the disease, and credibly experience information technology even potent than maine since information technology be absolutely beyond their manipulate. The drug rich person changed my behavior in way that be unmanageable for them. Since my holocene decibel operation, thing be good. associate in nursing deep-rooted stimulator deliver electricity to the brain. When life bring you challenge information technology normally bring approximately possibility excessively. For maine information technology cost important to search for those .
brit, forty-seven
” hold my hand properly ! Your hand feel like fish-pudding, ” my husband read one day we be out walk. “ You expression angry, merely your voice sound glad, ” my daughter allege ampere few day former. one be open and honest with the pull the leg of, and test not to panic them. merely one ‘m afraid of not be a good enough mother, that one whitethorn not establish them the memory they deserve. fortunately, both maine and my conserve own a well-developed feel of liquid body substance that spare uracil from many site. information technology can often be a piece ghoulish. What the heck, deoxyadenosine monophosphate long arsenic information technology leave in vitamin a emancipate laughter .
Anders M.Leines, fifty-one
photographer of This cost parkinson ‘s
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