The Point of Impact
Jaci Haakonson is a caregiver for her husband Ted, who has ALS. Ted was diagnosed in 2012 after a routine visit to his doctor for an annual check-up. By and large Ted never got sick but would visit Dr. Goulsby, his family practitioner annually for a check-up and Dr. Goulsby would always ask “what’s different this year from last year?” During his annual visit in 2012, Ted mentioned he’d been having trouble with his thumb, particularly when attempting to land his RC Airplane, as well as stumbling a bit and having had a fall on some stairs at home. Dr. Goulsby asked a few more questions, made a note in Ted’s chart and wrote a referral for a neurologist to be certain Ted was clear of any undetected damage as a result of his fall. The follow-up visit to the neurologist would prove to be the appointment that changed their lives.
"We call receiving the diagnosis our 'Point of Impact', because looking back, upon hearing those words 'You have ALS' it felt as though we’d been t-boned by a semi-truck." Jaci says.
In many respects Ted and Jaci were lucky to have received the diagnosis so early in the onset and again when Ted was accepted into an early research trial in Rochester, MN. His specialists gave Ted an initial diagnosis of 18 to 24 months that could go as long as 3 to 5 years. However, Ted has defied these odds.
Ted's ALS has progressed significantly since 2012; he is no longer mobile, has a feeding tube, is intubated and communicates with a Tobii eye-gaze Dynavox, "but he’s still Ted." Jaci tells us. She goes on to share "We’re doing all we can to stay as close to "normal” as we can get. Keeping Ted as independent as he can be is the core of our day-to-day life together."
Just last year Ted was invited to a Lamer's Race Experience at Road America, and jumped at the chance for Ted to do some laps. It took a little extra work, but Jaci was ready to make this happen.
"Having a plan for the future has been the core of staying ahead of the disease and its progression." Jaci is a planner and she and Ted took the time to have the hard talks about how they wanted to handle what they knew was coming.
"ALS is a community disease and we are blessed to have an extensive support system." Jaci says. Their family is close and Ted’s parents visit regularly and will stay with him while I get out of the house for a bit. Friends and neighbors touch base regularly or pop in to visit and spend time with Jaci & Ted. Everyone is capable of meeting Ted’s basic needs so Jaci can run errands or take a little time for herself.
"Life doesn't stop coming at you after an ALS diagnosis." Jaci shares.
Jaci continues, "Ted and I know firsthand the toll this diagnosis takes on the person receiving it, as well as their caregivers and loved ones. You need a network. That's what makes ALS a community disease and The ALS Association local care services team have been so supportive to us over the past decade. They’ve been with us every step of the way with kindness, patience, knowledge and whatever equipment we’ve needed that my insurance didn’t cover."
The ALS Association will continue with our mission of support, until there's a cure.