Support Tom Johnson in His Fight Against Lewy Body Dementia

It is with heavy hearts that we share the diagnosis of our beloved husband, father, and stepfather, Thomas Johnson. In 2024, Tom was diagnosed with Lewy Body Dementia (LBD) and REM Behavior Sleep Disorder, which is often a precursor to LBD. While this news has deeply impacted our family, we remain focused on making the most of the time Tom has left with us- doing what he loves and enjoying life to the fullest.

Tom is the heart and soul of our family- a loving husband, father to three, stepfather to two, and proud grandfather of two beautiful girls. He has always been the “go-to” person for everyone who knows him, constantly giving of himself without ever asking for anything in return. Over the past 40 years, Tom has dedicated his career to heating and air conditioning, tirelessly supporting his family and always putting their needs first.

Outside of work, Tom has a passion for the outdoors. He loves to fish, hunt, and spend time on the boat, and there’s nothing he enjoys more than quality time with his family and dogs. A dedicated sports fan, you can often find him cheering on the Dallas Cowboys, Philadelphia Phillies, and Boston Bruins.

Unfortunately, Tom’s diagnosis has forced him to stop working, which has left him unable to continue the career he has poured himself into for decades. As a family, we want to ensure that Tom can still experience the things he loves while he still remains cognitively strong.

Lewy Body Dementia (LBD) is a progressive brain disorder that affects thinking, memory, movement, and behavior. It occurs when abnormal protein deposits called Lewy bodies develop in the brain, affecting the areas responsible for cognition and motor control. LBD is the second most common type of dementia, yet it remains largely undiagnosed and under-recognized. Some common symptoms of LBD include cognitive decline, fluctuating cognition, visual hallucinations, motor symptoms (e.g., tremors, stiffness, difficulty walking, poor balance, etc), mood and behavior changes. Unfortunately, there is no cure for Lewy Body Dementia, and it gradually worsens over time. However, with early detection and treatment, symptoms can be managed to improve quality of life.

In addition to managing his diagnosis, Tom is currently being treated by neurologists and physicians at the Mayo Clinic in Jacksonville, Florida. He has bravely volunteered to participate in multiple research trials, undergoing bloodwork, spinal taps, MRI scans, DAT scans, PET scans, and intensive cognitive testing. Though this trial won’t change his own outcome, Tom hopes that his involvement will lead to earlier diagnosis and, one day, a cure for others facing this cruel disease.

We are incredibly proud of Tom’s strength and selflessness. Despite knowing the reality of his diagnosis, his focus is not on himself but on the future of others who might benefit from this research.

Tom has always been the one to lend a hand, offer advice, or step up when someone needed help. Now, it’s our turn to support him. We are asking for your help in ensuring that Tom can continue to find joy in his favorite activities, spending meaningful time with his family, and living the rest of his life to the fullest, despite this diagnosis.

Any contributions will go directly toward giving Tom the best quality of life possible- whether it's a trip to the AT&T Stadium for a game, a fishing trip, a vacation with his family, or simply ensuring his comfort as he navigates this challenging journey.

Tom is a fighter, and together, we stand with him. Lewy Body Dementia has picked the wrong man and family to mess with, and we are committed to fighting alongside him every step of the way.