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"cerebral palsy"


Photographer Captures His Twin Brother’s Cerebral Palsy Through Breathtaking Images

By: Tasneem Nashrulla / posted on August 23, 2013 at 5:30pm 

For 13 years, Christopher Capozziello dealt with the grief and guilt of being the “healthy” brother by photographing his cerebral palsy-afflicted twin.

Christoper Capozziello, a Connecticut-based freelance photographer, started taking pictures of Nick, his twin brother who has cerebral palsy, when they were 20. Now, 13 years later, Christopher wants to tell their story through a book, The Distance Between Us, which is being funded by a Kickstarter campaign.

Christopher spoke to BuzzFeed about the experience of capturing his brother and their relationship through the years.

“I first began making pictures of my brother at a time when I was trying to understand the kind of photographer I was becoming.”

"I first began making pictures of my brother at a time when I was trying to understand the kind of photographer I was becoming."
“Without any intention of telling our story, it emerged years later out of a steadily growing archive that chronicled his experiences and unknowingly at that point, my grief.”

“In the very beginning he didn’t like it, so I would sneak one or two pictures and then he’d realize what I was doing, and he’d turn his face away from my camera or flip me the bird.”

"In the very beginning he didn’t like it, so I would sneak one or two pictures and then he’d realize what I was doing, and he’d turn his face away from my camera or flip me the bird."
“One of the earliest pictures was of him in bed, waking from a cramp. I walked into our bedroom, and the sunlight on him looked beautiful. I crouched to make a picture and the shutter from my old Nikon was so loud that it startled him. He punched me in the face.”
View the full article at Buzzfeed



Cerebral Palsy: Behavior, Anger, and Decision Making

Angry Fits and the Decision Spiral of Doom
I belong to a CHASA (Children’s Hemiplegia and Stroke Association) Facebook group called ‘Hemikids and Pediatric Stroke Survivors’. Many of the members are parents of children with hemiplegia who are looking to share their experiences, hopes, and fears. There’s one particular topic – behavior problems – that keeps coming up.
Behavior problems seem to be a recurring ‘partner’, if you will, with cerebral palsy. I read a lot about temper tantrums, uncontrollable rages, that sort of thing. What always strikes me about the posts is that the parents are completely lost. They don’t know where it’s coming from and they don’t know what to do about it. If you’re in that boat, I might be able to help you: your child was me, and there is indeed hope.
I want to start off by stressing that I am NOT a medical doctor, or associated with any medical field whatsoever. I can only speak about my experiences. They may have the same causes as other children’s; they may not. If you have any questions about possible medical treatments for your child, always listen to your doctor waaaay before you listen to me.
Now that that’s out of the way: I had a TERRIBLE temper problem from age 2(ish) through age… oh, I dunno, 12 maybe? I still get it sometimes (in a different form), but I’ll come back to that later. And I mean total, black-out, terrifying rages. Way beyond a typical temper tantrum. I honestly can’t remember a lot about them. Mostly what I do remember is being overwhelmingly, debilitatingly furious, and frightened by it because I couldn’t stop or control it. It literally felt like someone had switched off my brain, throwing it into an electrical spin as it frantically tried to get back on track.
Read the full article at Chasa


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Coping with the News that Your Child has Special Needs

Receiving the News

I remember very clearly the day our pediatrician told me and my husband about our daughter's disability. She had been born eleven weeks premature, and we knew she had suffered some brain damage during the emergency c-section, but despite those facts, we still hoped for the best. At six months old, we knew she was behind developmentally, but we thought it was because of her prematurity. At the doctor's office, however, we found out differently. He told us it looked like she had symptoms of cerebral palsy and that the best thing for her would be to get involved in occupational and physical therapy right away. My husband sat there, stunned. I held my sleeping daughter in my arms with one question racing through my mind. I had to ask, "Does this mean she could be in a wheelchair the rest of her life?"
When he answered, I began to cry and the doctor came over and hugged me and my daughter.
That was nearly five years ago. I did not cope very well with the news. I felt a myriad of emotions - sadness, guilt, overwhelmed, anxious, scared - all of which led me into a state of depression. If I had known then what I know now, I probably would have had an easier time dealing with this news. That's why I'd like to share.


Acceptance of your child's special needs can be very difficult. Every parent wants their child to be healthy and whole. "As long as my baby's healthy" is often what parents say when asked if they want a boy or a girl. When it turns out the baby is not healthy, it can be very traumatic.
The most helpful thing to accept what is going on with your son or daughter is to grieve what your child may never be. One of the things I had to grieve was that I might never be able to see my daughter take her first steps. A parent of an autistic child may have to grieve the loss of their child ever having an in-depth conversation. Depending on the child's disability, the grieving will be different for each case.
During the grieving process, remember that is okay to cry and to feel sad. It's important to feel these feelings instead of trying to stuff them down deep inside, which could ultimately lead to depression, as it did with me. The important thing is to not stay stuck in these emotions.

Read the full article at Carl Jean 

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The pubs rewarded with 'cerebral palsy beer' for accessibility

By Damon Rose / July 16, 2013
In Gothenburg, Sweden, bars and restaurants with good disability access are being rewarded with beer instead of a more traditional certificate.
The specially brewed beer, dubbed CPA or cerebral palsy beer, is a hybrid of Indian pale ale and American pale ale and is described by the makers as "one that everyone will want to stock in their bar". The bottle features a stylised picture of a woman with cerebral palsy in a wheelchair.
The Gothenburg Cooperative for Independent Living (GIL) is behind the beer campaign and hopes to take discussion about disability to new audiences.
"We like to cause a stir and make people react and create feelings," says GIL's Anders Westgerd. "Disabled people are marginalised in media and hence you have to do something non-traditional to create feelings and make people angry."

Read more at BBC 



Medical Sex Workers

This is a sensitive, if not controversial discussion on why adults with severe mental and physical disabilities are not given chances to explore their sexuality.  

 In this short Vice video we meet a female medical sex worker who's job at the White Hand organization involve giving severely disabled clients non-intimate sexual relief. We also meet her client, a man with Cerebral Palsy (?).    

The mindset is that since sex is a basic human need, it should come as no surprise that despite whatever the disability, that sexual desire and yearning for closeness does not necessarily go away.  

 In turn, when the general public naively denies or refuses to acknowledge the very real sexual feelings of someone with Cerebral Palsy, Dementia, Spina Bifida etc., they are also denying them a chance to be fully apart of society and enjoy/explore their own urges.   

This video is in Japanese so enabling the Youtube close caption (cc) is needed.   

[WARNING: This video does contain some graphic content. Although it is censored, viewer discretion is advised.] 



Jan Brunstrom-Hernandez, St. Louis Doctor With Cerebral Palsy, Offers Hope


ST. LOUIS — Dr. Jan Brunstrom-Hernandez gently but sternly admonishes a teenage cerebral palsy patient who clearly hasn't been doing his exercises, stressing the importance of keeping muscles loose and limber.
"We know it's not fair, but that's the way it is," Brunstrom-Hernandez tells 15-year-old patient Sam Ward. "Do you hear me? I know what I'm talking about."
Brunstrom-Hernandez, who founded the Cerebral Palsy Center at St. Louis Children's Hospital 15 years ago, has cerebral palsy, giving her a special empathy for the people she treats.
Cerebral palsy is a broad diagnostic term referring to disorders that affect movement and posture. It is caused by injury or abnormal development of the brain, usually before birth. Many patients suffer from other afflictions, too, such as speech or hearing difficulties. Symptoms vary greatly.
Brunstrom-Hernandez, 50, was surrounded by doctors from a young age as she coped with the disorder. She figures that's a big reason she knew as a small girl she wanted to be a doctor. Still, she initially balked at specializing in treating others with cerebral palsy.
"I didn't want to be surrounded by more of me," she said. "I didn't feel good about myself because of my disability."
A chat in 1997 with Dr. Mike Noetzel at St. Louis Children's Hospital changed all that. At the time, Brunstrom-Hernandez was doing research on cerebral palsy and was surprised to learn treatment hadn't progressed much beyond the treatment she received in the 1960s. He suggested she launch a cerebral palsy clinic.
"All I said was, `You've got some good ideas. I think people would listen to you. Let's at least try to start something,'" he recalled.
The clinic opened in May 1998.

There are many clinics in the U.S. that treat cerebral palsy among many other neurological disorders, but the St. Louis center is unique in its singular focus, said Kaelan Richards of United Cerebral Palsy.
Brunstrom-Hernandez and her team of doctors and therapists see patients of all ages – babies to adults – from across the world. The center has treated about 2,000 people since opening 15 years ago.
Sam, at the clinic recently with his parents, is in many ways a typical teen. He wore a T-shirt, shorts and sported a sly grin as Brunstrom-Hernandez examined him – even through her motherly admonitions.
"She helps me walk better," he said. "Just be better."
Anna Marie Champion of Atlanta has been bringing her daughter, Morgan, on the 11-hour trip to the St. Louis clinic for 10 years, since Morgan was 3. Morgan uses a walker but is scholarly and motivated, a seventh-grader who already has earned a college scholarship.
"We went to St. Louis and it was a whole different approach," Champion said. "It has turned her life around completely."
Brunstrom-Hernandez stresses the need for exercise and communication. From childhood, movement was difficult for her.
"If the wind was blowing hard enough, I'd fall down," Brunstrom-Hernandez recalled.
Her mother made her keep moving, even requiring her to stand in the kitchen to do dishes when it was the last thing the little girl wanted to do.
"She insisted that I not be dependent," Brunstrom-Hernandez said. "She insisted that I pull my weight. It's a good thing. It made me tough and it made me strong."
Strong, yes, but Brunstrom-Hernandez acknowledged she sometimes felt embarrassed by cerebral palsy. She recalled how she would recoil if she caught a glimpse of mirrored glass showing her struggling to walk.



Dan Keplinger – Artist and Motivational Speaker


Dan is an artist that paints with a stick attached to a headband. Dan has mixed spastic and athetoid cerebral palsy.

Painter’s canvas becomes his voice

Dan Keplinger, artist, motivational speaker and the subject of the Academy Award-winning documentary King Gimp, isn’t sure if he discovered his voice through art, or if art gave him a voice. For Dan his passion for art began when his high school teacher encouraged him to express himself through art.
“I just look for powerful feelings and emotions that give me a certain connection,” said Dan. “My art speaks what I would be saying with words.”
At around 9-years-old a documentary film crew began documenting area children of differing economic backgrounds and began following Dan’s journey. The documentary, King Gimp, received an Academy Award and his artwork sales soared and his calendar filled with speaking engagements.
“People are more willing to take time to understand me,” said Dan. “I do not know if they now realize that I do have something to say, or if what I do say just blows them away.”

Visit Dan Keplinger’s website for more information.