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Paul and Judith Newman urge friends to walk with them on Sept. 28



Photo Credit: REVIEW PHOTO: VERN UYETAKE - Preparing for the ALS Walk in Portland in September are Paul and Judith Newman of Lake Oswego and Aubrey McCauley (left) of the ALS Oregon chapter.Judith Newman’s body has been almost entirely crippled by ALS, but her mind is sharp and her message — tapped out with the help of a special speech device — is clear: Participating in the Portland Metro Walk to Defeat ALS on Sept. 28 is important.

“ALS robs its victims from head to toe,” said Newman’s husband, Paul. “Their legs, their voice. They can communicate only with tremendous effort. ALS is like a long walk in the cold rain. Sometimes there is an opening in the clouds and the sun breaks through. But an ALS diagnosis is a death sentence. The only question is when.”

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord and eventually leads to loss of muscle control. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include difficulty speaking, swallowing or walking. There is no cure, and most patients die from respiratory failure within three to five years.

Doctors have told Judith and Paul that she only has six months to two years to live. But the Walk to Defeat ALS, held in Portland by the Oregon & Southwest Washington chapter of the ALS Association, is providing plenty of inspiration to Judith and her army of supporters.

In a hopeless situation, they are finding hope.

“There is hope,” Paul said. “The ALS Association is absolutely marvelous. It provides a place we can all come together where there is care, safety and knowledge.”

The timing of this year’s walk couldn’t be better. It comes on the heels of the nationwide Ice Bucket Challenge, which has raised awareness and — through Wednesday — more than $94.3 million in donations. That’s an impressive total for a disease that normally flies under the radar; during the same time period last year, the ALS Association raised only $2.9 million.

“Often an ALS victim thinks they are the only person with the disease,” said Aubrey McCauley, development director for the ALS chapter in Portland. “But at the walk, they get a sense of empowerment. They find they are not alone. When they see their peers, they realize that we are all in this together. There is something we can do about this disease.”

Somewhere between 80 and 100 members of Judith’s walk team, known as Judith’s Jewels and dressed in clothes of royal purple, will be at the starting line at the World Trade Center in Portland on Sept. 28, along with thousands of other ALS walkers. By the end of the day, the association hopes to have raised $420,000.

Judith will lead the way for her team in her electric-powered wheelchair. Judith’s Jewels has participated since 2010, a year after Judith was diagnosed with ALS.

Judith’s trouble signs started in 2007, when she experienced weakness in her left arm and slurring. That was quite unsettling for someone who was an accomplished linguist. In 2008, she really began having strength issues, and she took a series of neurological tests. The outcome came a year later.

“It was very sad,” Paul said. “Sad is not even close to being an adequate word to describe your feeling. News like that leaves a void, it leaves a hole, and you can’t fill it up.”

But as soon as the sad diagnosis was made, friends and family started gathering to support Judith. When Judith’s Jewels participated in the Portland ALS Walk for the first time, Paul was stunned by the number of people who arrived at the World Trade Center.

“There were friends, relatives, neighbors,” Paul said. “People who I thought were only acquaintances were showing up.”

Since then, there has been some encouraging news. Funds raised over the years are now resulting in research that is opening the door to what was previously unthinkable: a cure.

“In recent years, genome research has identified a chromosome related to the cause of ALS,” Paul said. “This makes me hopeful for the future. If they can find the cause for ALS, then it’s ‘Katie bar the door.’”

For more information about the 2014 Portland Metro Walk to Defeat ALS, go to www.alsa-or.org.

Contact Cliff Newell at 503-636-1281 ext. 105 or This email address is being protected from spambots. You need JavaScript enabled to view it..

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