Denise Womble will always look at her husband and see him as the “big, gentle teddy bear of a guy” he is. All six-foot-three-inches of him embodies so many qualities that his wife grows to appreciate more every day, especially since his Alzheimer’s disease diagnosis in September 2022 at 64 years old.
“He is very strong, very tough. He is brilliant — he was a computer engineer, one of the smartest men I’ve ever met. So sweet and so nice, and such a great father to our two children and a wonderful grandfather,” she says, beaming with pride as she describes her husband. “He is still all of these things; there’s some forgetfulness in there.”
Still living together in their beloved Manassas, Virginia, home, Denise has remained at her husband’s side since learning of his diagnosis. Resilient and persistent in finding a treatment to preserve as many days with the man she loves, Denise shares her family’s story and the path to discovering an experimental Alzheimer’s drug that has done precisely that. She hopes to
encourage other families to be their loved one’s strongest advocates for better Alzheimer’s disease treatment options.
The long road to reaching a diagnosis and path to treatment:
The decline of Brian’s health began with a diaphragmatic hernia, a rare disease causing his heart to move, his intestines to shift into his chest, and his lung to collapse. As they navigated this diagnosis, his family noticed an increase in his forgetfulness.
“We knew something was going on,” Denise says. Was it related to the hypoxia in his lungs and limited oxygen flow to his brain? They even wondered if his years as a football player had something to do with it — Brian’s father was diagnosed with CTE from his time as a football player, so the family didn’t rule out that possibility.
They worked closely with his neurologist, who was persistent in finding the cause of his cognitive symptoms. When they were officially determined to be caused by Alzheimer’s disease, Denise struggled to accept the feeling of a “dead-end” diagnosis. Looking back, she says she could’ve used much more help at the time as her husband’s caregiver.
“Once you hear that there’s something going on with your brain, or your spouse’s or your loved one’s brain, it’s just unbelievable. And your life just turns to, ‘Now what?’ There are very few resources out there for help and hope.”
She joined support groups and began talking to a counselor. “The wonderful thing about people is making connections because you never know who is going through some of the same things in life,” she says.
But Denise still felt “hopeless.” She struggled to connect with people whose loved ones were in different — more advanced — stages of the disease. She felt her counselor had little experience supporting family members facing this diagnosis.
She recalls being unable to stop crying, wishing they could treat this diagnosis “just like the flu.” She was willing to do “whatever it took” to find new avenues for her husband. Doctors suggested the Mediterranean diet, exercise, and regular brain activities for mental and cognitive stimulation. However, Denise refused to accept these methods as the only treatment options.
“Persistence” became the theme of the Womble family’s journey with Brian’s diagnosis, ultimately opening more doors for his treatment than they’d imagined possible since receiving this news. Denise immersed herself in research and dedicated her efforts to finding the “right” neurologists for Brian.
“One of the things that I learned throughout my life was never accepting ‘no’ for an answer. I’ve been called persistent many times, and I’m okay with that,” Denise says. “Go out and find people who are thinking outside the box because, at this point in life, you have to have hope. The idea of him ending up in the corner as a vegetable would not be okay for any of us.”
Denise eventually found hope in a doctor who was “a big believer in research and trying different things.” He introduced them to an experimental drug with a promising outlook for patients like Brian.
Discovering hope in experimental treatment:
In 2022, Brian’s new doctor suggested he was a good candidate for TB006, an experimental drug that targets a protein involved in brain inflammation associated with Alzheimer’s disease. Denise “read every single thing possible” about the medication and contacted the company. By September 2022, she had secured Brian a spot in the trial taking place near their home in Virginia.
“The first time he started it, he was on a placebo. It was a double-blind,” she says. Following the trial, Brian moved into the treatment phase and began traveling to New York City to see Dr. William Gael for monthly infusions. He recently received his ninth infusion.
Denise says TB006 has done two things: it’s helped improve Brian’s behavior and symptoms and given the Womble family hope.
“That’s the biggest thing that’s missing when people give you the diagnosis — hope,” she says. “This medication was a haven of hope for us.”
Denise remembers noticing the immediate impact of the TB006 treatment that indicated this was the answer they had been looking for.
“The day before he got the drug, he couldn’t pick up his cell phone and call our daughter. He couldn’t figure out how to put his password in or how to make a call. The next day, he picked up his phone, put his password in, and called our daughter,” she recalls. “We saw him getting functionality back.”
While Brian has “mostly good days,” Denise says some days aren’t as great. “There’s confusion at times, but I haven’t seen him get worse, which also gives us hope.”
Brian is continuing his monthly infusions in New York City, allowing him and Denise to make a trip out of his treatments. “We go to Broadway, and Brian loves to go to comedy shows. It’s keeping him social. We’ll do whatever it takes.”
Denise reminds people whose loved ones have been diagnosed with Alzheimer’s disease not to settle with a diagnosis but, if they have the resources necessary, to seek out alternative treatments that may improve their loved one’s daily functioning and quality of life.
“We even went to a very large hospital that knew nothing about this specific trial, and all they did was say ‘Alzheimer’s, Alzheimer’s, Alzheimer’s,’” she recalls of the beginning of their journey to learning about TB006. “You have to find that solution. You have to find a doctor who will listen to you and find a way to give you hope. Don’t give up. Find something that’s going to help work for you. That’s what we did.”
Helping a loved one enjoy their favorite activities outside of a routine:
Since Brian is in the very early stages of his Alzheimer’s disease diagnosis, he’s still highly independent. Denise has found that helping Brian maintain the autonomy of his life and a connection to himself comes by letting each day look different and allowing him to do the things he enjoys freely.
“We have certain days that we’re babysitting for a grandchild, and those days we get up early, and we go pick him up and bring him to our house, and he is so good with him. It’s just wonderful to watch them play.”
While they have no typical day or set routine, they’re each focused on keeping Brian active and social in all his favorite ways.
“He loves being with other people. It’s about keeping him going out and doing things,” Denise says. “When we’re not babysitting, we have a favorite restaurant that we go to where he knows lots of people, and we know the owners. We’ll go to the movies with friends. We’ll go to New York just about every other week because he just loves the energy of the city.”
Brian also loves gardening and riding his bike. Whenever Brian takes a solo bike ride, Denise tracks him using his phone’s location services and an Apple AirTag tracking device.
Brian works with a speech therapist to “help him connect thoughts and words.” He also does free online cognitive exercises through HAPPYneuron, a training method that stimulates the five main cognitive functions. Denise calls it a “wonderful program” that helps Brian keep his computer engineering mind engaged and challenged.
“Some days, he can’t remember his password to get in, but he has a book with everything written down so he can refer to that. They do all kinds of puzzles and activities to keep his mind engaged. He likes doing that kind of thing.”
Denise says keeping regular house chores can maintain normalcy without a set routine.
“He does more things around the house than I do — I am so spoiled,” she jokes. “He does the laundry. I like him to be in charge of certain projects so he can feel like I’m not the one bossing him around all the time. He can do everything I ask of him. I think it’s just about the encouragement.”
At the end of the day, it’s about making the hours work for him and giving him rest when he needs it. “He sleeps a lot,” she says. “But I refuse to treat him any differently.
Advice for spouses who have turned into caregivers for their life partners:
What’s important for spouses-turned-caregivers, Denise says, is remembering that you’ll go through stages of grief.
“You have to grieve. You have to learn how to accept it. You have to do every single thing that you can do to find help. But you have to get through that grieving period,” she says. In her experience, surrounding herself with family and friends is critical throughout these stages.
“The biggest advice I can give caregivers is to get through those stages of grieving and take care of yourself. If possible, get [your loved one] on board with walking and doing whatever you like to do, too, so that you can find ways to relax and enjoy life together.”
She refers to a funny acronym adopted from one of her friends: S.K.I.N., which stands for “spend kids’ inheritance now.”
In celebration of their birthdays, just days apart, Denise and Brian spent the day at a spa getting massages before meeting friends at the pool. They’re departing on a cruise in just a few short months.
“We’re retired, we can do what we want to do, and every day is a God-sent blessing,” she says. “Enjoy the time together now while you have it. Hold hands, do new things, go places, travel. Just enjoy today. As the adage says, ‘Tomorrow is not promised.’”