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Shelley Osterloh ReportingALS is a disease that robs people of their independence and eventually their life. It’s described as dying inch by inch as the body slowly shuts down.
But for one man, ALS has brought some remarkable blessings. Since last November Ken Powell has continued to lose his ability to move. There is no cure for ALS and most people die with in two to four years from onset. Ken has now had ALS for three years.
What makes him so inspirational is the attitude and dignity he and his wife share as they move toward his inevitable "last tomorrow."
Three years ago Ken Powell noticed he couldn't turn the ignition key of his car. Gradually the nerve cells of his arms and legs died leaving him immobile.
While there is no cure, Neurologist Mark Bromberg says there is some research progress to slow the disease.
Mark Bromberg, M.D.,Ph.D., Neurologist: “Even though we don't understand why cells die, there are enough theories that people have designed drugs to attack those steps."
And Ken -- a retired BYU Professor and Engineer -- is trying to help. He has, on his own, measured and charted his decline.
Ken Powell: "One, just to help me to know where I am and where I'm going, how fast. Secondly if there is any chance at all that my recording this information will help in the study of this disease then I want to contribute what I can to that. "
They periodically visit the University of Utah Motor Neuron Clinic to learn about adaptive equipment and other resources.
As his body shuts down it becomes more difficult for his wife Judy to care for him. She's developed back problems from lifting and a knee injury when they fell. But despite the troubles and knowledge that he is dying, they try to focus on living.
Judy Powell: "The very first poem that he wrote when he found out about the disease was about cry only twice. Cry once when we found out and cry when he dies, but in between help me build memories. And I've literally taken that to heart because I want his memories to be good memories."
So they do things they enjoy -- music, family, nature. They look for ways that they can help or encourage others. They cherish what they have, not what has been taken.
Ken Powell: "That gets discouraging if you think too much about what you've lost. But if you think about what you still have and what you can still do and you focus on that, and as Judy says, live till you die."
Judy Powell: "We thought we knew what love was, but until you totally have to serve someone or until you totally have to depend on someone to take care of you, I think that's where the true love, the deeper love...I'm a so blessed for that deep love."
Even though he tires easily, Ken still writes every day with his voice activated computer. His volumes of poetry about life, death and giving will be part of his legacy. And when death comes, Ken and Judy say they will accept it.
Ken Powell: "But knowing that there is a life beyond this one, and a purpose and meaning to life, makes it a lot easier. And makes it something like looking forward to the next chapter of the story."
The Powell's believe death is a transition to another kind of tomorrow. Ken's advice for others: Plan for the future, but live and enjoy today and try to leave the world a better place for having been here.