ALS saps strength, not will


BY OLIVIA COBISKEY
SVN REPORTER
ocobiskey@svnmail.com


Gail Olin sat in his Sterling basement, excitedly writing his thoughts on the small chalkboard on his lap.

Tap, slide, tap, scratch, tap, tap, slide - the sound of the chalk filled the room.

He turned the board.

"It takes the body but not the mind."

A low moan, almost a sigh, escaped his body now riddled with amyotrophic lateral sclerosis, ALS, a motor neuron disease that has left him unable to speak or eat. His once-muscular frame is now little more than a skeleton wrapped in skin. He knows his fate, it is written in the lines of his face.

Scratch, tap, slide, tap, tap, slide

"The memories make it easier."

Easier to let go?

He nodded.

The 69-year-old grandfather is in the final stages of ALS, commonly known as Lou Gehrig's disease. Gehrig, a first baseman for the New York Yankees, first brought national attention to the incurable disease in 1939, when he abruptly retired after being diagnosed; he died two years later.

Olin's wife, Rita, 62, first noticed he was slurring his words, one of the initial signs of ALS, in 2004. Other symptoms include weakness in a hand, foot, arm or leg, and difficulty walking.

At first, his family thought he had a stroke, but tests confirmed the ALS.

There is no known cure.

"He feels fortunate he got it later in life. He had a good life, raised his children," said Rita Olin of her husband of 45 years. "We've encountered people who have had it much longer and some much shorter. So that's why I think a person's just got to take each day as it comes, because I think your attitude and how you react to things is what keeps you going."

Gail agreed, nodding his head.

Tap, slide, tap, scratch, tap, scratch.

"Never give up, pray for healing."

Still in charge

According to the Web site for the California-based ALS Association, a national not-for-profit health organization leading the fight against ALS, stem cell and gene therapy are promising areas of research. The Olins said they know it may be too late for them but they are hopeful for future families.

More significant advances in ALS research have occurred in the last decade than in all of the time since the disease was first described by the French neurologist Jean-Martin Charcot in 1869. Advances in technology and the genetic revolution are aiding researchers in unlocking the ALS mystery, and as more scientists focus on this perplexing disease, the future does look better.

For Gail, good days are becoming rarer. He took the doctor's advice to have a feeding tube inserted before his muscles deteriorated past the point of allowing the procedure to succeed. He uses a suction machine to clear the phlegm that builds up in his throat, threatening to choke him. Confined to his chair, he relies on others to physically carry him up and down the stairs of his home.

On bad days, he coughs uncontrollably, unable to clear the phlegm. Sleep eludes him as he sits in his chair in the basement watching the sky turn dark than light again through a small window.

On a recent good day, he woke up early and felt energetic. He has a good sense of humor and spins out wisdom via his chalkboard.

Scratch, slide, tap, tap, slide

"If this world was love, not hate, how great it would be."

It is one of many phrases he dishes out to the friends and family who visit him daily.

Gail is the anchor for this family - two children, Kris and Brent; their spouses, Greg and Jennifer; and four grandchildren. He has always been "Mr. Fix-it" and the keeper of important dates - the day he met Rita, birthdays, anniversaries, the mileage between the town he was born and where he now sits.

Even as his body betrays him, Gail is unwilling to acquiesce an ounce of freedom.

"He calls the shots. The kids do their best," Rita said. "We're trying to respect his wishes."

Chief among those wishes is to remain in his basement sanctuary - the place where, as a professional welder, he escaped after a hard day of work. It's the place where he had total control. He finds some peace there as he slowly losses the battle for his body.

His family wants him upstairs, but he has declined offers to build a ramp or handicap accessible bathroom. He is happiest in his blue easy chair surrounded by his tools and memories.

"He gets his way," Rita said and laughed. "The hospice nurses keep telling him though, there might come a time when he has to be up stairs. So, I think he's going to enjoy being down here as long as he can."

The final days

They know how this will end, but still, his family hasn't completely prepared for the inevitable.

"We haven't thought about the dying part," Rita Olin said. "We're not handicap accessible. We discussed that early on - about moving to another house to make it easier when the time came. But this is our home, where it's been all these years, and he wanted to stay here.

"Our son keeps saying he'll build a ramp. (Gail) doesn't want any of that. We talked about a chair lift, but now he jokes about his son and son-in-law being his chair lift."

However, Gail recently did agree to hospice care and has signed a request not be revived when his lungs finally fail.

Gail brought a bit of levity to the heavy discussion.

Tap, slide, tap, scratch, tap

"Now, I don't want an expensive casket just a wood box. Simple, nothing fancy."

Simple, the way he lives his life.

"We take each day has it comes," Rita said rubbing her husband's knee. "We don't think about how bad it can be. We just deal with each day as it comes. Sometimes he has to bring me to that because I was never a person to take each day as it comes, but that's the only way you can lead a some what normal life. (You) just kind of deal with what you can deal with today."

Tap, slide, tap, slide, tap, slide.

"I can't change yesterday. I don't know tomorrow. Live best today."

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