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His vision blurred; his career ended
August 19, 2007
He was photographing a game
when his hand started shaking.
Herald and News photographer
Ron Winn was in Branson, Mo., with reporter Steve Matthies, covering the Oregon Institute of Technology’s
Hustlin’ Owls. It was the national men’s basketball tournament, March 2005.
He couldn’t hold the camera still. His vision blurred. He felt sick.
Within weeks, a form of muscular
dystrophy ended his career.
The fade had begun.
His wife, Millie Biela, hands over a color photograph that has that 1970s yellowed-plastic look ” four young track athletes posing in a stadium in Washington state.
“There’s Ron.” She points to a kid in the middle of the team wearing gold and purple uniforms “ he’s not wearing one of the funny looking caps. He’s not smiling; he’s not frowning; he has a teenager’s look of indestructibility.
Another contrast, another reminder of Ron Winn’s fading away. Thirty years ago, he was a star sprinter who turned down athletic scholarships to study photojournalism, a passion he chased until just two years ago when he was taking award-winning photographs for the Herald and News.
Now, it’s May 2007. He can’t walk very well. He can’t breathe easily. It’s hard to swallow. He contemplates being fitted with a feeding tube. If he doesn’t, the end will come sooner.
He has mitochondrial myopathy, a form of muscular dystrophy. The energy-producing parts of his body cells “ mitochondria “ are malfunctioning. He spends most days in bed with constant pain. His vision and motor skills deteriorated, so he can’t drive, but he doesn’t have the energy to go anywhere anyway. He has grandchildren in New York City he can’t visit. He can’t even take his wife out for dinner and a movie.
He still wants to take pictures, but he can’t hold a camera or see well enough to focus.
At 51, he is far from wanting to retire from photojournalism, much less be done with life. He decides to fight the fade and get the feeding tube.
He isn’t wearing that indestructible look he had 30 years ago.
‘Everybody has to cope’
Millie works as a private caregiver. She goes to clients’ homes and cooks, dispenses medication, chauffeurs and comforts.
And then she does all those things in her own home for her husband.
She doesn’t deny some days are exhausting, frustrating, depressing. She gets along by being busy and refusing to dwell on the inevitable.
“Everybody has to cope,” she says. “I’m no different from anyone else.”
Millie and Ron met in Havre, Mont., in 1997. She was recently divorced after a 30-year marriage. She planned never to marry again, and she’d forgotten how to date. She was going to move with two of her daughters to Missoula where they could all attend University of Montana classes. Then she met Ron.
“I noticed him, just noticed him,” she says.
Millie read that he was hired as the Havre newspaper’s photographer. She met him at a Christmas party for Head Start, the government-funded preschool program where she worked. She commented to fellow teachers that he looked interesting and they laughed.
Ron had moved to Havre with his son, Zaaron. Millie says she’d see Ron around town ” his blue car was easily recognized. When they were near each other, they’d chat a few minutes. Ron acted shy around her.
She started noting events they’d both be at.
“I spent forever trying to figure out what I was going to wear, because I knew he was going to be there,” Millie says.
The first date
Finally, a friend of hers who worked at the paper convinced Ron to call her for a date. When he did, her co-workers got just as excited as Millie and rushed to get her ready, said her friend Jan Larsen of Havre.
The first date: they had coffee, went to a park, talked.
After that, they started going to lunch together and Ron picked her up whenever he saw her walking up the hill to work.
He was gentle and kind, she says. And he was good with cats.
“It was instant passion,” Larsen says.
Millie’s daughters moved to Missoula. She moved in with Ron and Zaaron. She says they were “happy bachelors, but slobs.” She set to work getting their house in order.
A visit to meet Ron’s parents in Utah also was in order. Millie says they were leery of her at first, considering the troubles that plagued Ron’s first marriage, but they eventually came to trust her.
Millie laughs, remembering Ron’s mother keeping him up all night to prevent him from sleeping with her.
Ron and Millie moved to Klamath Falls in 1999. She had said she wouldn’t marry again, but she did, two years later. It was important to Ron and she loved him and wanted to make him happy.
He jokes that his illness is so rare it could be named after him: the Ron Winn Syndrome.
Doctors at first didn’t know what it was. They ran test after test, took blood samples, ordered MRIs, spinal taps. Balance and motor control problems made some think he had a degenerative neurological disorder such as Parkinson’s disease, multiple sclerosis or Lou Gehrig’s disease. Other doctors suggested an autoimmune disorder ” his own body attacking itself, destroying the control center of his nervous system and his vision.
More than a year after the illness forced him to quit his career, Oregon Health Sciences University doctors sent a muscle biopsy from Ron to a lab on the East Coast. They determined he had mitochondrial myopathy. And, they said, there wasn’t much that could be done.
Dr. Edward Cupler of OHSU explains the disease like this:
Inside every human body cell is a mitochondrion, a non-human cell that is accepted and needed by the human cells they live in. Mitochondria are factories, producing energy by processing oxygen and proteins.
Starving body cells
Mitochondrial myopathy means the mitochondria are defective. They produce too much of one of the proteins needed by a cell and fail to produce the actual energy needed, starving the cell until it dies, releasing all the extra protein and damaging surrounding cells.
Migraines, gastrointestinal problems and even diabetes can be attributed to more than 40 mitochondrial myopathy syndromes.
The disease occurs in one out of 3,000-4,000 people, making it as common as cystic fibrosis among Caucasians in the United States. It is a genetic disorder, caused by mutations or changes in one’s genes.
It’s more likely for children to be diagnosed with mitochondrial myopathy because of an intense focus on developmental issues. But Cupler sees patients from all across the age spectrum at his Portland clinic, from adolescents to the elderly.
Mature patients with mitochondrial myopathy are often misdiagnosed with chronic fatigue syndrome or fibromyalgia because those conditions share symptoms and are commonly seen in older individuals.
Testing isn’t easy. “You can’t just do a blood test and say this person has a mitochondrial disorder,” Cupler says. A muscle biopsy is required, because muscle cells have abundant mitochondria.
Cupler doesn’t know which syndrome Ron has; there are no definitive tests to separate them.
Wednesday, in Part Two: As his time fades out, Ron Winn reflects on his life, and his wife tries to make his last days easier.
He was photographing a game
when his hand started shaking.
Herald and News photographer
Ron Winn was in Branson, Mo., with reporter Steve Matthies, covering the Oregon Institute of Technology’s
Hustlin’ Owls. It was the national men’s basketball tournament, March 2005.
He couldn’t hold the camera still. His vision blurred. He felt sick.
Within weeks, a form of muscular
dystrophy ended his career.
The fade had begun.
His wife, Millie Biela, hands over a color photograph that has that 1970s yellowed-plastic look ” four young track athletes posing in a stadium in Washington state.
“There’s Ron.” She points to a kid in the middle of the team wearing gold and purple uniforms “ he’s not wearing one of the funny looking caps. He’s not smiling; he’s not frowning; he has a teenager’s look of indestructibility.
Another contrast, another reminder of Ron Winn’s fading away. Thirty years ago, he was a star sprinter who turned down athletic scholarships to study photojournalism, a passion he chased until just two years ago when he was taking award-winning photographs for the Herald and News.
Now, it’s May 2007. He can’t walk very well. He can’t breathe easily. It’s hard to swallow. He contemplates being fitted with a feeding tube. If he doesn’t, the end will come sooner.
He has mitochondrial myopathy, a form of muscular dystrophy. The energy-producing parts of his body cells “ mitochondria “ are malfunctioning. He spends most days in bed with constant pain. His vision and motor skills deteriorated, so he can’t drive, but he doesn’t have the energy to go anywhere anyway. He has grandchildren in New York City he can’t visit. He can’t even take his wife out for dinner and a movie.
He still wants to take pictures, but he can’t hold a camera or see well enough to focus.
At 51, he is far from wanting to retire from photojournalism, much less be done with life. He decides to fight the fade and get the feeding tube.
He isn’t wearing that indestructible look he had 30 years ago.
‘Everybody has to cope’
Millie works as a private caregiver. She goes to clients’ homes and cooks, dispenses medication, chauffeurs and comforts.
And then she does all those things in her own home for her husband.
She doesn’t deny some days are exhausting, frustrating, depressing. She gets along by being busy and refusing to dwell on the inevitable.
“Everybody has to cope,” she says. “I’m no different from anyone else.”
Millie and Ron met in Havre, Mont., in 1997. She was recently divorced after a 30-year marriage. She planned never to marry again, and she’d forgotten how to date. She was going to move with two of her daughters to Missoula where they could all attend University of Montana classes. Then she met Ron.
“I noticed him, just noticed him,” she says.
Millie read that he was hired as the Havre newspaper’s photographer. She met him at a Christmas party for Head Start, the government-funded preschool program where she worked. She commented to fellow teachers that he looked interesting and they laughed.
Ron had moved to Havre with his son, Zaaron. Millie says she’d see Ron around town ” his blue car was easily recognized. When they were near each other, they’d chat a few minutes. Ron acted shy around her.
She started noting events they’d both be at.
“I spent forever trying to figure out what I was going to wear, because I knew he was going to be there,” Millie says.
The first date
Finally, a friend of hers who worked at the paper convinced Ron to call her for a date. When he did, her co-workers got just as excited as Millie and rushed to get her ready, said her friend Jan Larsen of Havre.
The first date: they had coffee, went to a park, talked.
After that, they started going to lunch together and Ron picked her up whenever he saw her walking up the hill to work.
He was gentle and kind, she says. And he was good with cats.
“It was instant passion,” Larsen says.
Millie’s daughters moved to Missoula. She moved in with Ron and Zaaron. She says they were “happy bachelors, but slobs.” She set to work getting their house in order.
A visit to meet Ron’s parents in Utah also was in order. Millie says they were leery of her at first, considering the troubles that plagued Ron’s first marriage, but they eventually came to trust her.
Millie laughs, remembering Ron’s mother keeping him up all night to prevent him from sleeping with her.
Ron and Millie moved to Klamath Falls in 1999. She had said she wouldn’t marry again, but she did, two years later. It was important to Ron and she loved him and wanted to make him happy.
He jokes that his illness is so rare it could be named after him: the Ron Winn Syndrome.
Doctors at first didn’t know what it was. They ran test after test, took blood samples, ordered MRIs, spinal taps. Balance and motor control problems made some think he had a degenerative neurological disorder such as Parkinson’s disease, multiple sclerosis or Lou Gehrig’s disease. Other doctors suggested an autoimmune disorder ” his own body attacking itself, destroying the control center of his nervous system and his vision.
More than a year after the illness forced him to quit his career, Oregon Health Sciences University doctors sent a muscle biopsy from Ron to a lab on the East Coast. They determined he had mitochondrial myopathy. And, they said, there wasn’t much that could be done.
Dr. Edward Cupler of OHSU explains the disease like this:
Inside every human body cell is a mitochondrion, a non-human cell that is accepted and needed by the human cells they live in. Mitochondria are factories, producing energy by processing oxygen and proteins.
Starving body cells
Mitochondrial myopathy means the mitochondria are defective. They produce too much of one of the proteins needed by a cell and fail to produce the actual energy needed, starving the cell until it dies, releasing all the extra protein and damaging surrounding cells.
Migraines, gastrointestinal problems and even diabetes can be attributed to more than 40 mitochondrial myopathy syndromes.
The disease occurs in one out of 3,000-4,000 people, making it as common as cystic fibrosis among Caucasians in the United States. It is a genetic disorder, caused by mutations or changes in one’s genes.
It’s more likely for children to be diagnosed with mitochondrial myopathy because of an intense focus on developmental issues. But Cupler sees patients from all across the age spectrum at his Portland clinic, from adolescents to the elderly.
Mature patients with mitochondrial myopathy are often misdiagnosed with chronic fatigue syndrome or fibromyalgia because those conditions share symptoms and are commonly seen in older individuals.
Testing isn’t easy. “You can’t just do a blood test and say this person has a mitochondrial disorder,” Cupler says. A muscle biopsy is required, because muscle cells have abundant mitochondria.
Cupler doesn’t know which syndrome Ron has; there are no definitive tests to separate them.
Wednesday, in Part Two: As his time fades out, Ron Winn reflects on his life, and his wife tries to make his last days easier.
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| Brats, Brews and Blues: Annual event raises money for bereavement camp |
Reader Comments
The following are comments from the readers. In no way do they represent the view of HeraldAndNews.com. Comment Disclaimer: The editors of heraldandnews.com reserve the right to refuse publication of any comment posted for consideration. We may refuse for any reason, including use of profanity, disparaging comments, libelous comments, etc. Any reader who notices a comment they believe is particularly offensive, should notify us at webmaster@heraldandnews.com.
leesa wrote on Jan 23, 2009 12:37 PM:
" these things should never happened in this world. the world should be safe. "
samantha r. wrote on Sep 23, 2008 12:12 PM:
" this article is So true when your a teen girl and your pregnant It seems to feel like your life is over and there is no way you can fix it but that's not true if your young and your going to have a child then stay focused in school your child wants you to succeed in life so he/she can succeed in life my name is Samantha R. I'm 14 years old i live in Klamath falls and i might be pregnant :] If so I'm determined to make sure my child has a better life then i did :] "
Babe wrote on Jan 23, 2008 6:54 PM:
" I think that chiloquin people do need help and not just the teens but i have also seen places that are alot worse i moved from L.A to chiloquin and ive been back there since and trust me chiloquin is nothing. I also think that crime and drugs etc. are noticed more because it is so small compared to other places and there is no form of disaplin at all "
Tony P. wrote on Jan 19, 2008 7:55 PM:
" I remember the night the plane went down.. My mother crying and my dad in tears.. his dad searched for him for years...
"
"
RSS
Jane D. wrote on Apr 10, 2009 12:00 AM:
I Love You Bobby
May your soul Rest In Peace
-Deems "