More than a year ago local readers were introduced to Ryan and Martha Tofteland.
The young couple and their children, Finn and Liv, were visiting Ryan’s parents, Steve and Julie Tofteland, and his childhood home in rural Luverne for Thanksgiving 2018.
It was a bittersweet visit for the young couple.
Two years prior, in August 2016, Ryan was diagnosed with amyotrophic lateral sclerosis or Lou Gehrig’s disease after experiencing weakness in his left leg.
The November 2018 visit to Luverne was considered Ryan’s last, as sitting for a drive from the Cities was getting difficult as the disease slowly stiffened his body.
A year later, Ryan, now 40, is dependent on his motorized wheelchair and recently began communicating through Tobii, an eye gaze device that uses a recorded voice similar to his own to speak for him.
Ryan is receiving hospice care as the young family comes to terms with the prognosis.
“I wish that we could tell you how long we have, but we just don’t know,” Martha wrote in her CaringBridge.com journal entry on Jan. 21. “… Ryan and I collectively have calmed down and are trying our hand at bravery again.”
She describes time passing in “a blur” as the couple weighs options for Ryan’s care.
A clinical trial at the Mayo clinic in Rochester ended with no effect on the ALS progression.
All medical care is now delivered exclusively at the couple’s Orono home, as traveling now leaves Ryan exhausted.
Even as his physical condition deteriorates, Ryan continues to advocate for ALS sufferers
In July 2019 he made one last trip to Washington, D.C., to support the “ALS Disability Insurance Access Act.”
A CaringBridge entry from Ryan’s mom, Julie, outlined the need to eliminate the five-month waiting period for Social Security Disability Insurance benefits for ALS patients and also opposed the Medicare competitive bidding for certain equipment.
Julie also encouraged more funds into ALS research. “We live in hope that a cure can be found,” she wrote.
In September the Tofteland RAT Pack team raised $74,128 for ALS research during the annual Walk to Defeat ALS event in the Twin Cities.
The team, named for Ryan’s initials, topped the single team record the group set in 2018.
Through Ryan’s CaringBridge account Martha shares ways to help the family over the next few months, and many are stepping up with acts of support.
A schedule of Wednesday night suppers is filled through May, and Sunday Fun Day schedule for Liv and Finn is set through mid-March.
The CaringBridge site also has space for supporters to write messages to the couple, and here’s where we all can help.
Let’s show the Tofteland family that Ryan’s hometown is a community of caring individuals. Support is simply a matter of getting on the computer.
Go to the free caringbridge.org site and search The RAT Pack to help support the Toftelands in their journey.