Don Kent, a 71-year-old living with Lewy body dementia, shares the story of how he reached the 8,751-foot summit of Texas's Guadalupe Peak with the support of his wife and children.
Guadalupe Peak, a mountain that stirs awe in even the most seasoned hikers, is located in Guadalupe Mountains National Park in Texas and boasts an elevation of 8,751 feet above sea level. For the Kent family, it became the site of a very unexpected adventure.
“He said he wanted to hike up this mountain,” Cynthia Kent recalled her first conversation with her husband, Don Kent, a retired attorney. “We’d been married 48 years. Never once in our life has he said ‘Let’s go hike up this mountain!’ He does have Lewy Body dementia.”
But it wasn’t a suggestion Cynthia took lightly. In fact, she promptly called two of her sons, both practicing attorneys, one of whom lived nearby, in Texas, and the other in D.C.
What started as an idea rapidly became a six-month family affair to train for the daunting climb to the “Top of Texas,” a strenuous 8.4-mile round-trip journey with a 3,000-foot elevation gain.
Over the next six months from May to November, Don walked over a thousand miles and lost 90 pounds in the process. He walked religiously around his neighborhood and through trails in Tyler State Park near his home. He even purchased a NordicTrack treadmill to mimic the 40-degree angle of the Guadalupe Peak trail.
Don’s diagnosis of Lewy Body dementia
Lewy Body dementia, the kind Don lives with, is the second most common form of dementia, but it is also one of the most frequently misdiagnosed. While, like other kinds of dementia, it may bring memory issues, these often don’t appear in early stages of LBD — and that makes it difficult to catch early.
Don was misdiagnosed by six different neurologists before being diagnosed with Lewy body dementia in 2016. Since, he has become an advocate, educating people about Lewy body dementia and sharing how he continues to live a full life with the disease.
One of Don’s earliest symptoms was a change in his personality. “All of a sudden, I became this sort of explosive personality, very angry, saying mean things to people which I had never done before,” Don told Being Patient.
“It’s been a challenge to remember that there’s times he may be frustrating you, but you’ve got to step back and say ‘He’s not the person that he was when we were growing up,’” Jarad said how his father’s diagnosis affected their family. “He’s had changes, and you’ve got to account for those, and certainly be patient with him as he deals with that.”
Although Don’s goal to summit Guadalupe Peak was a complete surprise to his family, Jarad and Drew didn’t hesitate to get on board.
“If he’s gonna get passionate about something, it might as well be living a healthier lifestyle and improving his physical fitness, in hopes that it will help him with his overall condition as well and slow the progression.”
The climb
At sunrise at the base of the mountain, the Kent family was joined by several friends who were inspired by the trek and decided they wanted to join. The group set out on the trail, with their packs full of essentials for the day. As the day wore on, Cynthia and a few of her friends climbed about 2,000 feet before turning back and leaving Don, Jarad and Drew to summit the mountain.
“That last half-mile to get up the peak is more of a climb than a hike,” Don said. “I was greatly relieved and had a great sense of accomplishment having gotten there.”
Don’s time at the summit, a total of 15 minutes, was cut short by his sons who were concerned that darkness was already approaching.
“My son Jarad, my middle son, said ‘Dad, you’ve got 15.’ So we did our picture-taking and I ate lunch and drank quite a bit of water and rested.”
The family began the harrowing journey down the mountain, which took longer than the journey to its summit.
“With my Lewy body dementia, one of my biggest issues is visual spatial disorientation,” Don said. “I don’t see staircases going down as well as I do going up. I thought I’d done enough training, but my legs on the way down became like rubber to me and that made it very difficult.”
During the descent Jarad and Drew had to catch their father from falling over the edge of the trail, which has no railing and is completely unprotected from the 3,000 foot drop that awaits.
“My brother was walking behind him, and then I would walk in front,” Jarad described. “On parts where dad would have to step down or parts where dad was falling, my brother would just hold on to my dad’s backpack from behind and sort of lift him up and carry him down the steps.”
Cynthia, who was joined by her friends, anxiously awaited her husband’s arrival in the parking lot. “We had some deer hunting telescopes. And so we were looking through the telescopes up on the mountain and as they were coming down we could see them,” Cynthia recalled seeing the headlights of her family members in the dark. “I’d see Don start to fall and my son saving him. You feel so helpless because you’re way down at the bottom of the mountain.”
The group completed the last 45 minutes of the trail in complete darkness with only their headlamps to guide them.
“We want to encourage people to live their best life, and this is a goal he had, and he did it,” Cynthia said of Don. “But we don’t want to leave the impression that this was easy. This was very difficult, very dangerous, and luckily he had his two sons there.”
What are Don’s next mountains to climb?
Although proud of his accomplishment, Don doesn’t plan on summiting Guadalupe Peak again. He has picked up jogging and has goals to jog both a 5K and a 10K by the end of the year.
He also changed the way his family thinks about fitness: His son Drew is an accomplished marathon runner, but Jarad, in D.C., said this journey to help their father sparked fascination with fitness in Jarad’s own life. “I’ve lost probably 65 pounds since I started that process and completely changed my lifestyle,” he said. In fact, he plans to hike the Grand Canyon soon.
“One thing I would say to people with dementia,” Don offered: “Recognize what you can and can’t do. There are a lot of things I can’t do, and I choose to dwell on what I can do.”
‘Misdiagnosed by Six Different Neurologists:’ Don Kent’s LBD Journey
