November is National Family Caregivers Month, a time to honor the vital role caregivers play in the lives of their loved ones. This month, ALS TDI will spotlight inspiring stories of family members who provide essential care for those living with ALS, celebrating their compassion, resilience, and unwavering support.

Caregiving for someone with ALS is always hard, but caregiving on the road presents a unique series of challenges. This is a reality Dan Telgkamp knows well. Dan’s daughter, Sam, has been living with ALS since she was diagnosed in 2022 at the age of 25. Despite receiving a devastating diagnosis at such a young age, Sam was determined to continue living her life to the fullest – and Dan was committed to facilitating that goal in any way he could.

Part of this effort has meant helping Sam continue to travel. Since her diagnosis, Sam and Dan have gone on several trips that would be ambitious for anyone — much less a family dealing with the realities of ALS. From their home in Cincinnati, OH, they’ve traveled by plane, car, train, and boat, visiting places as close by as New England and as far-flung as South Africa. Sam has written about these journeys extensively on her blog, Staying Loudly.

“It's very hard,” Dan says. “But it’s worth it. It’s easy for me to say that now. If you had asked me a week after we got back from Alaska, I might have said something different. But it’s well worth it to see the laughter on her face, and the faces of the people around her.”

Sam’s parents served as her primary caregivers for nearly two years after her diagnosis, until recently bringing in a team of professionals to help. This came at Sam’s request, who wanted her parents to be able to “be mom and dad again,” and allow them some relief from the 24/7 demands of ALS caregiving. However, when they’re traveling Dan and his family serve as Sam’s caregiving team — helping Sam with all of her needs as they make their way to and from their destination and making sure she’s able to safely participate in activities when they get there.

Flying to the Other Side of the World

Their first big trip after Sam’s diagnosis was their journey to South Africa in 2023. Dan says it was a logistical, physical, and emotional challenge, but also an incredible and fulfilling journey. The trip was made possible with help from their community, including a grant that paid for their plane tickets from the Keven W. Donovan Foundation, an organization that supports travel for people with ALS.

Getting there and back was the most difficult part — a 17-hour flight there and, due to multiple unexpected disruptions, a 24-hour flight home. Although at the time she could still stand a walk for a short distance, getting to the bathroom from her seat was impossible – meaning she had to rely on a diaper while on the plane. Once in South Africa, there were many additional challenges. Like many other developing nations, the country has scheduled rolling electricity blackouts, which at one time stranded Sam and her family on the second floor of a building for two hours as the elevators stopped operating. In general, accessibility throughout the trip was an issue – from rental cars and vans that were not wheelchair equipped to hotel rooms that were misleadingly advertised as disability-friendly.

“Those are things that you need to think about if you're going to take a long trip like this,” says Dan. “Just be prepared, which we weren't because we were new at this. Be prepared for obstacles and have a plan in place.”

Despite all this, Dan says they still had an incredible time exploring Africa. The family worked together to make sure Sam was able to complete the ambitious itinerary she had prepared with one of her sisters despite all the obstacles they faced.

“We did everything we wanted to do,” he says. “We did Table Top Mountain, we went on a safari for three nights. We went to a lion sanctuary, and we walked with the elephants. We were there for about two weeks, and we didn’t let ALS stop us.”

Alaska by Land, Air, and Sea

Following their journey to South Africa, Dan, Sam, and several of their family and friends undertook another major trip earlier this year, an Alaskan cruise. While it was another ambitious undertaking, they had their previous travel experience to help them prepare. Also, this time they had help from an expert planning their itinerary, which was put together by Larry Kaplan, a travel agent and ALS advocate with extensive experience planning just this kind of trip. With Larry’s help, they arranged to have all the adaptive equipment they would need on their way to and from Alaska, on the ship, and for every excursion they made along the way. 

“Larry helped us out a lot,” says Dan. “When we did excursions, we would get off the boat and there would be an ADA-accessible van or bus waiting for us. The excursions were ADA accessible and when we’d come back, the bus would be there to take us back to the ship. We did an excursion at every stop along the cruise, and at every stop, it was spot on”

However, this trip also came with some challenges. Sam experienced some trouble with thickened saliva that made eating difficult. Luckily, they had come prepared with suction equipment to deal with the situation — a point Dan says is important to remember for others with ALS considering a cruise. The biggest issue arose, however, on the way home.

While they had good luck with their initial flight from Cincinnati, which included a stop in Seattle, the way back proved to be a traumatic experience. Their return flight included an extra stop in Atlanta. Before taking off in Seattle, the airline staff were not properly trained in assisting someone with ALS and hurt Sam while transferring her to her seat. Then, due to more issues with staff in Atlanta, they were forced to wait nearly an hour for her wheelchair to be brought to the gate. They almost missed their last connection to Cincinnati and had to board an already full plane — a very difficult situation when dealing with a wheelchair. 

Dan says that, due to this experience, they do not intend to travel by plane again.

“We actually got refunded for all the flights,” he says. “But we're probably not going to use them. That’s what put an end to it. Sam said, ‘we're not flying anywhere else.’”

Road Trips Closer to Home

In addition to their travels around the world, Dan and Sam have also visited destinations relatively closer to home, including a pair of road trips to the Northeast. These were both centered around attending the annual retreat organized by Her ALS Story, a group of young women with ALS. In 2023 and 2024, they made their way to the retreats, held in Boston and Cape Cod, with additional stops in places like Niagara Falls, Salem, West Virginia, Maryland, and Delaware.

While traveling by car might be a less intimidating undertaking than a full-day flight, Dan says it still took a lot of planning and preparation to make sure these trips went smoothly.

“We took two big power battery packs to power everything,” he says. “We brought all the equipment. We even took the toilet chair for the hotel rooms. We brought all the formula. We took it all. You never know what you’re going to get into, and we wanted to make sure that we had everything. It's a lot of packing, but it’s well worth it.

Lessons Learned

Throughout all these trips, Dan says that the most important lessons he’s learned are to make a plan and to ask for help.

“The most important thing is to plan ahead for your person’s needs,” he says. “You need to know what’s going to be on the other side. There are so many resources out there and the ALS family is so strong. Just because you don’t know anybody where you’re going, reach out to ALS organizations and they’ll help you connect with someone, like we did [with Larry Kaplan.] He planned 98% of our trip to Alaska because he knows how busy we are being caregivers.

“Were there things that we worried about? Absolutely,” he continues. “We’re parents and caregivers. A disability is a disability, but memories are memories. So, plan ahead, and don't let anything hold you back.”

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