Hello all -

It was great to see the NYTimes article have an impact on our local area's awareness of moyamoya. One of Linda's goals this year was to help continue to spread the word in the media about moyamoya. Last week an article was featured on the front of the second section and above-the-fold about Linda's MM story!  Thanks for everyone's continuing efforts and of course big kudos to DJ from Jack and Linda. Looking forward to seeing everyone who can make it to the gathering in Las Vegas!

Story follows here (from Eureka, California):

“A whole new way of living”
Kneeland woman shares experience of rare illness

Sara Watson Arthurs
The Times-Standard                       Tuesday, July 19, 2005

On one of her more recent trips to the hospital, Linda Arnold said she told the intake nurse she had moyamoya. The New York Times had profiled a woman with the disease in March, and for once Arnold heard reactions of familiarity rather than blank looks.

Arnold is used to having to give explanations for an illness believed to afflict less than one in a million people. And she does it with a sense of humor. In October’s Senior News she wrote, “My name is Linda and I have moyamoya. It’s not a tropical drink. It is a rare progressive disease affecting the brain.”

People with moyamoya disease have narrow and abnormal blood vessels in their brain - the name comes from Japanese for “cloud of smoke,” describing the appearance of the blood vessels on scans.

Arnold had a stroke in 1999 at age 49. Then working at the Humboldt Senior Resource Center, she’s also worked as a zookeeper and makes jewelry. But for a long while she was unable to use many of these skills.

“I couldn’t walk, talk, think,” she said. “I couldn’t feed myself.”

But gradually she re-learned some of her old skills. Some, she said, came back more quickly than others. She recalled learning again how to use the telephone, dialing the numbers and then telling the operator, “Hi, please connect me with Jeff.” Asked which Jeff, she replied, “My ‘friend’ Jeff.”

To this day, she has short-term memory problems. She said it can be embarrassing - people thank her for things she can’t remember having done.

She spent some time going through rehabilitation for the stroke before heading to Stanford, where she had a bypass surgery in which a blood vessel along her scalp was connected to blood vessels on the brain to increase the blood flow to the brain.

The surgery was considered successful - but several months later, Arnold had another stroke and “it was back to square one.”

An estimated 1 in 2 million people have moyamoya. It’s so rare when Arnold first was diagnosed she’d never met anyone else who had it.

“I felt like a real alien,” she said.

Since then an online support group has sprung up. Arnold, a Kneeland resident, has traded stories and support with moyamoya survivors from Sweden to New Zealand at moyamoya.com. The group will meet face-to-face for the first time next month in Las Vegas.

She’s also gained support from the Traumatic Brain Injury class at the Eureka Adult School, affiliated with the nonprofit Making Headway. She said others who’ve suffered brain injuries can relate to the difficulties.

She recalled recently talking on the phone to a friend, telling an anecdote about a movie she’d seen. Only she couldn’t recall the name of the movie. The friend shrugged it off as a “senior moment,” Arnold said, but it’s typical in her conversations. She said she struggles with short-term memory problems but can recall the Latin names of reptiles and amphibians with no problem. That, she said, she knew before the stroke, from her days as a zookeeper.

And she said that, after some real struggles when she was first ill – the difficulty using the phone and so on - people often are still too quick to help, to assume she has fewer skills than she actually does.

“Half the time I need it, the other half I don’t,” she said. “And it’s never the same for the same thing.”

She said she still gets tired easily and can get overwhelmed by noise and crowds. One of her legs was damaged by the stroke, so she can’t hike anymore - but she and her husband Jack Bellinger have become avid kayakers, as are some of her Making Headway friends.

Arnold said she used to be frightened on a daily basis, aware that she could have another stroke and suddenly die on the spot. It’s a real possibility. The National Institute of Neurological Disorders and Stroke states that “progressive deterioration of cognitive function” is common in moyamoya disease, as is death from brain hemorrhage.

But five years after her second stroke, Arnold said she has learned to live one day at a time. She goes kayaking, and is teaching others her jewelry skills. She said she is aware that she has fragile veins, and that so little is known about moyamoya still that she can”t know what to expect.

But she is determined to look on the bright side. Having short-term memory problems, she said, means jokes are still funny even when she’s heard them a dozen times. And she said she has met people in her traumatic brain injury class who live daily with worse disabilities than hers.

“What people live through is so phenomenal to me, and what people make the best of,” she said.

She and Bellinger moved here more than 20 years ago. She said she’s grateful for his support, and for the many longtime friends who’ve helped them out.

And through reaching out to others in her support group, she said she’s learned that it is possible to continue life with a disability.

“It’s a whole new way of living, but it’s just as valid,” she said. “And there are whole new things to learn about the human condition.”

Great story! Thank you so much for sharing it with us. I can't see enough stories like that. I'm so proud of her, and of all my MM family who has to endure.

The word is getting out there.  [smiley=thumb.gif]

Looking forward to seeing you in Vegas as well.

Mar

Excellent article little by little we're creaping out! [smiley=sayyes.gif]

thanks Linda and Jack for the story.  we love it.  its great to see the word about Moyamoya spreading.

Love to you both and see you both soon.

hillary

Linda and Jack -

Fantastic story!  That was wonderful!  Can't wait to see you both in Vegas too!

-Shari

Excellent article!  Thank you for sharing your story.  Looking forward to meeting everyone in Vegas!  
Jim and Christy.