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When time is the greatest gift, every day can be Christmas
"The best part was when the kids got to that age when they knew Christmas was coming and were just counting down days," Alan said.
'What's wrong with me?'
As Christmas approached in 2007, however, Alan knew something was wrong. He had been getting cramps throughout his body, and his right leg would start to stiffen up, tripping him. He ignored all of it, though, until a fall in a parking lot one day sent him sprawling to the ground.
"What's wrong with me?" he asked his wife.
His doctors ran a battery of tests. On March 11, 2008, specialists at Johns Hopkins Hospital confirmed it as ALS. On the way home, they both broke down crying.
"I always thought I'd be the one to take care of you," Alan told Cathy, sobbing. "I never thought it would be like this."
But once he saw how devastated she was, he set about trying to cheer her up. "At least I can finally get a handicap sticker for my motorcycle," he teased. "Think of the parking spaces."
It took a while for their three children to adjust. The youngest, Mary, moved home from college to be closer to him. Their two sons, Bradley and Aaron, helped take care of him, as well.
Looking for hope, Cathy seized on something the doctors had mentioned. The prognosis was two to five years, but some patients lived for 10 years and longer. Can we just assume it's going to be 10 years? she asked him. Let's come up with a 10-year plan.
"I thought if I worked hard enough, if I took good enough care of him, it wouldn't get any worse," she said. "But it doesn't work like that."
They created a "bucket list" of things to do and crossed them off, one by one. Alan, a lifelong motorcycle fanatic, took a 10-day trip down to the Florida Keys with his biker buddies. He and Cathy went to the brewing factory for Coors (Alan's favorite) in Colorado and made a requisite pilgrimage to the annual biker rally in Sturgis, S.D.
But last year, after a particularly bad day just before Christmas, Alan told Cathy, "I hate to say this, but I just don't know if I'm going to make the 10-year plan."
The disease had progressed more rapidly than either had expected. By the end of the first year, Alan was falling constantly. He used braces to walk, and then a walker. Finally he had to use a wheelchair after a fall sent him to the hospital. At the recommendation of staff members at Alan's Veterans Administration hospital, they contacted Hospice of the Chesapeake, an intimidating move but one that has helped greatly. Together, they drafted a living will and started tackling such issues as power of attorney.