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Daniel K.

Masters of the bucket list.

When people talk about their bucket list, all sorts of travel, adventures, and experiences spill out.

Things like going to the Masters in Augusta. Seeing their favorite football team play in the Super Bowl. Taking a trip abroad. Skydiving or mountain climbing.

What we don’t talk about are the events that could make a bucket list a top priority - the unexpected or tragic diagnoses that could upend everything about the life you know.

Almost five years ago now, Dan Keuning experienced the first health crisis that brought his bucket list front and center. Dan was diagnosed with frontotemporal dementia (FTD), a group of disorders caused by progressive nerve cell loss in the brain’s frontal or temporal lobes.

The nerve cell damage caused by FTD leads to loss of function in those brain regions, which variably cause deterioration in behavior, personality, and/or difficulty with producing or comprehending language.

“I thought that would be the end of me,” said Dan.

“It was awful. The confusion. The bad decision-making. There was lots of really bad stuff in my brain,” he continued. “I ended up going to the Mayo Clinic, and they had me in a trial, but it’s not treatable. It was really just them observing me.”

As if that life-limiting diagnosis wasn’t enough, there was still more to come. Last February 2023, Dan and his wife, Lisl, were vacationing in Hawaii when Dan started noticing leg twitches.

Dan had built his life working as a nurse practitioner and had spent decades helping people in everything from a burn unit and palliative care to jail and nursing homes. He was even later elected as the county coroner. Suffice it to say, Dan was well-educated on what could be brushed aside and what needed immediate attention.  

“Looking at my legs, I just had an inclination that it was ALS,” Dan explained. “We went home, and I had an appointment, but the doctor said, ‘Let’s wait a few months. We won’t call it ALS today.’”

The ALS diagnosis didn’t come on that day – but it did come.

It was devastating, and the prognosis was grim. Doctors explained that he had anywhere from 1-3 years left. For Dan, who had spent most of his career working in palliative and hospice care, the irony of needing those services himself was not lost on him.

“It swung from the mental health issues and staying safe in the home with FTD to much more physical issues with ALS,” he told us. “My symptoms started in my legs, then in my shoulder. Now, it’s moved to my diaphragm, so I can’t take deep breaths and need to be on a machine as much as possible.”

Dan is also home with hospice now, and doctors feel he has less than six months to live.

“We’re going to live it up at home,” he said. “We’ve stopped travel – but we were good at bucket-listing. We filled up our bucket, dumped it out, and then filled it back up a few times.”

(Donate right here).

As Lisl told us, “We’ve been really committed to choosing joy, and we have a strong faith and belief that there’s a purpose to everything. We’re trying to show faith through everything that’s been handed to us.”

They’ve crossed some big items off the list. In December, they celebrated their 30th wedding anniversary, and a nonprofit called Wish Upon a Wedding, helped them plan a full-scale vow renewal, complete with a white wedding dress for Lisl, on the beach in Lake Michigan where Dan first proposed to her over three decades ago.

They also have three amazing kids, and the youngest is engaged to be married this year. 

“The wedding is a big bucket list event to get to this summer,” Dan told us. “I’m trying to stay as well as possible so I can make it there.”

For Dan and Lisl, just changing their focus from finding a cure to comfort and care has been a process. Dan doesn’t have to go into anyone’s office anymore – they do home visits now. He no longer participates in any studies. 

“Both of his diseases…there’s no cure,” Lisl explained. “People are working on it. But it doesn’t give us great hope for us in particular. By the time they find something, it will be too late for us, and that’s difficult. Being told by doctors, ‘We’ll just monitor your decline, because there’s nothing else we can do.’ We appreciate the honesty, but it’s hard.”

Dan’s experiences have opened up a lot of conversations about end-of-life care.

“10% of hospice is end-of-life care and death,” Dan said. “But 90% is living.”

The way they complete their bucket lists these days might look a little different. Maybe those trips abroad are in the rearview mirror. But the hope of walking his daughter down the aisle? You can’t beat that one. 

Remember, all of this has happened very quickly within the last few years. They haven’t had much time at all to wrap their heads around his mortality, let alone prepare their lives and homes for what these rare diseases might look like.

They knew pretty quickly they would need a wheelchair-accessible van, a ramp for their condo, and an accessible bathroom. It was a different list of sorts. 

This summer, they secured a used wheelchair van from a generous lady for $7,000. That left the ramp, which was becoming the highest need, and the bathroom renovation. But how could they afford it?

“If you think of me in my life, I was working three jobs,” Dan explained. “I had been doing well. All of that comes to an end when you go on disability. The government says, ‘You get 60% of your income off one job,’ and that’s that. So we sold everything. The house, the nice cars, everything.

“All of a sudden, we’re thinking, ‘Where do we go for help?’ Most services are for people aged 60 or over. I’m not a senior, so I don’t qualify,” he continued. 

So Dan started calling around and was referred to the Muscular Dystrophy Association (MDA). When Dan talked to them, they said they didn’t have funds to support him, but then they mentioned one other resource: “They said, ‘There’s an organization called Chive Charities that helps people like you who fall through the cracks.’”

As they were applying with us, the local Susan Mast ALS Foundation gave them an option for the ramp. If Dan and Lisl would pay a $500 installation fee, the organization would cover the entire ramp. There was just one catch. When Dan didn’t need it anymore, they would take it down, put it in storage, and pass it on to the next person in need. Dan and Lisl agreed.

The last item on the list was the bathroom remodel. They asked their cousin, a professional tile layer, to help with the project to cut down on costs. A college friend is doing the plumbing. But still, that left a sizable amount to cover materials and the rest of the work.

The MDA was right: Chive Charities exists to help people who might otherwise fall through the cracks.

With the support of our incredibly generous donor family, we funded the remaining cost of the bathroom remodel for a total impact of $7,500. 

“We’re blessed with a close family,” said Lisl. “They come by and visit or when we need them to, and they’ve really surrounded us with love and support. We’re so very thankful for that. It means a lot not to go through this alone. And wonderful foundations like Chive Charities, it’s huge. I mean, all of these things are expensive. It’s a massive blessing to us.”

Because of your contributions, another big list can be checked off. Dan can rest and be comfortable in his home, surrounded by his loving family. No energy needs to be wasted. He can save it all up for that warm summer day, his arm linked through his daughter’s as they take a long walk down the aisle together. 

We have no way of knowing what life has in store for us. But if we take a page out of Dan and Lisl’s book, we can hope to put into practice what they’ve done with so much grace these last few years – bucket list living. 

Join us in our movement to continue to help others like them, and to be the final stop for those who need us most. Become a monthly subscriber and DONATE HERE.

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