Friday, August 11, 2017

Living with ALS

Carrey Dewey with her husband Eric. The couple recently celebrated their 16th wedding anniversary. 
“Together, we knew we had to support each other, do the best that we could with this time left…”
She has become the “face” of ALS — amyotrophic laterals sclerosis — in her community. Her Facebook page has over 4,000 likes, and Carrey Dewey has found it her mission to educate others about this disease while advocating for support for those diagnosed with it.




ALS is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Normal physical movements of the body progressively become strained as the muscles eventually die, leading to paralysis. There is no treatment or cure. The average lifespan is three to five years, and the disease usually affects people between 40 and 70 years old.

“It is always fatal,” Carrey remarks starkly. “I can only say that now without crying because I’ve accepted it.”

The wife and mother of three was diagnosed in the summer of 2014.

“It’s really kind of hard to wrap your brain around, you can’t even try a treatment,” Carrey says. “I have three young kids so, for me personally, I knew that this was really my most important time to parent them with how I live out my life with ALS.”

This family photo was taken prior to her June 2014 diagnosis and hangs in the
living room above her fireplace. Photos: Patti Hartog

Her example includes appreciating every single day and using her time wisely. Tasks like writing letters, getting her kids little gifts, and knocking off items on their bucket list have kept her busy.

Physically, Carrey copes through the phenomenal care she is provided. From her primary doctor to caregivers to family and friends, they all make sure her body stays as comfortable as possible.
She and her family also started therapy immediately, which moved into the home about six months ago.

Much of Carrey’s strength lies in her husband Eric. Not only does he help with daily physical care, but he has maintained a career to support the family.

“I am truly blessed by the relationship that Eric and I have,” Carrey shares with some tears. “Together, we knew we had to support each other, do the best that we could with this time left, appreciate that time together, and just focus on the good. There’s more good than bad.”

Carrey's motorized wheelchair has helped her maintain mobility with the progression of the disease. 

Her extended support system includes her sister and her family, as well as the flood of love she receives from friends, neighbors, and church — much of it beginning since her ALS Ice Bucket Challenge the summer of her diagnosis.

Follow Carrey and her family’s journey on the Facebook page “Team Dewey: Kickin ALS.” If you want to offer support, read the post titled “Call me if you need anything” on her blog TeamDeweyKickinALS.com.

“Don’t say, ‘What can I do to help?’” Carrey says. “Say, ‘I can bring a meal. I can help the kids with a homework project. I can cut the grass…’ Everybody has a gift or talent they can share, their godly gift. What gift can you share?”

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