In a word, the video is heartbreaking. For 9 minutes and 20 seconds, Ryan and Martha Tofteland talk about it all. About how they first met and fell in love. About how they went on to marry and start a family. And about how an ALS diagnosis at Mayo Clinic in August 2016 is threatening to take it all away.
"We went on a Friday," Martha says in the video. "We had already had that whole next week scheduled with tests." But during that initial consultation, a neurologist told the couple he suspected Ryan had ALS, a fear that was confirmed later that day by phone as they drove home. "That's my most vivid memory," Martha says. "Because we had to, on our way home, pull over in Cannon Falls and just release."
Family members and friends were heartbroken after being told of Ryan’s diagnosis. But rather than accept defeat, they — like Ryan and Martha — have chosen to pool their collective energy into raising awareness and money for ALS research.
More than two years after the diagnosis, Martha says they consider themselves lucky that Ryan's disease appears to be progressing relatively slowly. But they know the road ahead is still dark. "I think the toughest part mentally and emotionally is being able to do less and less with the kids over time — it's been hard knowing that that's not coming back," Ryan says in the video. "I'd love to be able to watch my kids grow up. I'd love to be able to see them graduate from high school. And the only way that's going to happen is if research has a breakthrough that provides a treatment or a cure that buys me that time."
One of Ryan's neurologists at Mayo Clinic, Nathan Staff, M.D., Ph.D., tells us that's why he and others at Mayo work toward a cure, day and night. "There's a lot of optimism now in the field of ALS," Dr. Staff says. "We just had a second medication approved last summer, and while neither are a cure or as helpful as we'd like them to be, they're helping to at least prove we can change the progression of the disease."
Dr. Staff says that there are many other medications and therapies in the clinical trial pipeline that many of us are hopeful will be much better than the medications we have now." Part of that pipeline, he tells us, includes the clinical trial at Mayo that Ryan volunteered to be involved in.
Until those medications and therapies become available, however, Dr. Staff says he and others in Mayo's ALS Multidisciplinary Clinic in Rochester will continue to offer Ryan and other ALS patients a "one-stop shop" of services to help slow the progression of their disease as best they can. "In that setting, our ALS patients see a neurologist, a physiatrist, speech professionals, swallowing specialists, ALS-specific nurses, respiratory therapists and social workers," Dr. Staff tells us of the comprehensive appointments that occur roughly every three months. "They can come in and get all of their needs addressed in one half-day," he says, "rather than having to come back a week here and a week there, which allows them to get back home and live their lives."
That additional time with family is what Ryan and Martha cherish most, and what they hope their fundraising and awareness efforts will give to others. "There are families that don't get the time that we have," Martha says, "and they need the treatment, or the cure, now."
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