Arizona couple living with ALS encourages people to donate to MDA
By April Warnecke
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PHOENIX, Arizona (KTVK, KPHO) — The Muscular Dystrophy Association just announced 18 new grants, totaling $1.6 million. This means essential money for researchers trying to develop treatments for various neuromuscular diseases, including amyotrophic lateral sclerosis, sometimes called Lou Gehrig’s disease. It’s a progressive neurodegenerative disease. “Once ALS starts, it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe, and shortening the life span,” explains the ALS Association.
One Valley family is especially eager to hear about these MDA grants and the hope they represent. Doug Clough was diagnosed with ALS seven years ago. “I said, ‘OK, what’s next?’ I didn’t know it was terminal,” Doug said. “I didn’t know that the life expectancy was two to five years.”
His wife Karen was more familiar with ALS and knew what the diagnosis meant. “I was like, ‘You don’t get it. There is no cure for that,'” she recalled. Karen says they were devastated. The couple cried and prayed and vowed to live life to its fullest every day they had together.
“I think it just puts you in the mindset that we don’t know how much time we have, and so you need to make those memories now,” Karen said. “You think, ‘Oh, I’ll do that when I retire,’ but we’re probably not going to make it for him to retirement age, so we’re doing it now, and we’re enjoying it.”
Karen is now Doug’s caretaker. She says it’s hard work, but he constantly reminds her that she’s doing a good job and that he loves her. The couple recently renewed their vows atop Camelback Mountain, at the same spot where the couple got engaged years ago. A group of volunteers carried Doug up the mountain to make it happen.
Although ALS is weakening Doug’s muscles, the couple’s love is growing stronger. “I feel an obligation to God and to my family to live life,” Doug said. “To take advantage of the time you have.”
I didn’t know it was terminal. I didn’t know that the life expectancy was two to five years.
According to ALS.org, only 10% of ALS patients survive 10 years. Doug is in that small group, defying the odds by living seven years since his diagnosis. He says one of the reasons is clinical trials that helped his breathing. Many of the trials for treatments for ALS are funded by the MDA. The Cloughs hope people will consider donating to the organization. “You can’t do it without money, unfortunately,” Karen said. “Donating provides hope.”
The MDA’s annual fundraising gala, Toast to Life, is happening this next week, both virtually and in-person in Phoenix.
To tune in virtually, buy tickets to the local “Back to Reality” reception, or to donate to MDA, go to one.bidpal.net/mdatoast/welcome.
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