You could call it a show room, but for those dealing with ALS, it’s more like a dark glimpse into the future.
The San Diego Chapter of the ALS Association recently built a model bedroom and bathroom giving people a first-hand look at what it’s like to live with the disease.
ALS, also known as “Lou Gehrig’s Disease,” slowly stops people from moving while their brain stays perfectly sharp.
Some call it the opposite of Alzheimer’s disease.
“I can’t feed myself, I can’t bathe myself,” explained Don Daniels, who was diagnosed in 2009. “The flip side is thank goodness there is help and people willing to do that for me.”
Daniels is actually beating the odds, because most people will die within two to five years of diagnosis, according to stats provided by the ALS Association.
The disease is now closely linked with the “Ice Bucket Challenge,” a social media stunt perfected countless times over Facebook and other sites over the past couple of years.
It raised more than $100 million dollars and a priceless amount of awareness, but nearly three years after the viral challenge, the nonprofit is still looking for ways to attract help.
ALS impacts roughly 250 people in San Diego County, which is a relatively small number, considering the disease’s devastation.
Steve Becvar, executive director of the SD chapter of the ALS Association, says their show room is a practical way to help people understand how hard living with the disease really is.
“It can be a little stunning and we’re careful to make sure patients are ready” said Becvar, but he also knows people sometimes need a visual representation to understand things.
May is ALS awareness month.
People interested in donating to the non-profit, which primarily helps to fund research, can do so through the ALS website or by calling (858) 271-5547.