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This Is Our Life – And Alzheimer's Isn't Keeping Us From Living It

This Is Our Life – And Alzheimer's Isn't Keeping Us From Living It
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April 17, 2013
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"This Is Our Life" is the final line of a production entitled "Resurrection" that my husband Steve and I have been a part of with our church singing group for the past 17 years. 

During the last song, everyone in the congregation holds a candle that is lit from a single candle that stands alone on the altar. As each candle is lit, we watch the church go from dark to light.

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

 
This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer's is no more.  It's part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer's care, support and research. We've named our team "This Is Our Life" because we believe —similar to watching the church go from dark to light during the performance — if we all work together, we can illuminate the darkness of Alzheimer's. The more people willing to tend to the light, to spread awareness about Alzheimer's and to get involved, the closer we come to a time when Alzheimer's doesn't exist.

Alzheimer's is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer's.

Five years earlier, his mother was diagnosed with Alzheimer's.

In a way, Steve's diagnosis is a gift. Because we have this knowledge, we don’t waste a minute. We know this time is sacred.  Steve's quality of life is good—and we are living every day.

Time to Make a Difference

After receiving a diagnosis of Alzheimer's, there is so much you feel like you can't do. There currently aren't treatments to stop this horrible disease. There is no cure. But being part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action. And it's action that really matters.

The nearly $12,000 we raised last year helps  support Alzheimer's programs and care, and furthers the Alzheimer's research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.

At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer's is finished....or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event, to raise awareness and funds for Alzheimer’s care, support and research. 

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