Breaking the Silence: Battling Lewy Body Dementia with Courage and Grace

Lewy Body Dementia (LBD) is a progressive and debilitating neurological disorder

characterized by various cognitive and behavioral symptoms. These symptoms mimic
Alzheimer’s and Parkinson’s, making this disorder harder to diagnose and manage. LBD is more
common in individuals over 60, which makes Abigail Jennings’ story even more unique.

Jennings is a 35-year-old woman from Indianapolis, diagnosed with LBD. Stories are often told
from the perspective of those whose loved ones have been diagnosed with one of these
degenerative neurological disorders.

Being able to tell her own story was essential to Jennings. Together, Jennings, her son, Jaylen
Long (18), and her daughter, Riley Long (16), gave insight into the past, present, and future
struggles with this degenerative disorder.

“It was a mystery to myself and the doctors as to why my body was aging so rapidly,” Jennings
said. Jennings was hospitalized at the beginning of 2022 for severe malnutrition and received a
lifesaving feeding tube placement. This was when brain scans showed that Jennings’ brain
showed signs of Alzheimer’s.

Jennings, her doctors, and her family put the puzzle pieces together and recognized signs that
were missed over the years. “I have had difficulty concentrating, a very broken sleep pattern,
severe aversions to food, and increased issues with mobility,” Jennings stated. These symptoms
were written off, and she continued to work as a hospital administrator and raise her two
children.

According to Riley Long, the symptoms she noticed were “everything was always urgent. She
did not ever sleep much…” and the symptoms that presented over time, “she has lost mobility,
and her appearance is very different.” In addition, her mother now requires more medications,
and she has witnessed her mother’s heightened brain fog within the past six months. “I have seen
her go from extremely independent to needing constant care,” Riley Long said.

Jennings’ symptoms have undoubtedly progressed rapidly in the last year and now have
branched into other diagnoses. These diagnoses included osteoporosis, severe neuropathy, and
extreme weight fluctuation. Overall decreased ability has resulted in the requirement of 24-hour
care, mainly because Jennings has experienced numerous falls and has trouble regulating her
blood pressure and blood sugar.

Her symptoms have continued to dictate every waking minute. “I am now very fearful,” Jennings
declared, “when I have days of ‘normal’ brain function, I can't enjoy that time because I am
waiting for my next ‘episode’ of cognitive strain and confusion.”

After losing the ability to work and drive, she was required to assign a Power of Attorney to
make all decisions on her behalf. The days of dining out with friends, attending concerts, being
an overly zealous sports mom, and being a budding professional were cut too short for Jennings.
She felt like isolation was the only way to cope with her prognosis, “I do not want people to feel
the heaviness that I feel.”

Being able to cope with the physical side effects of this diagnosis has been extremely difficult for
Jennings. However, processing the emotional side effects has proved to be the most taxing. As a
result, she has often felt hopeless regarding the future. “I mourn the person I once was. Getting
diagnosed with pre-Alzheimer’s in my 30s leaves me very angry,” she stated. “But I also have no
desire for my body to outlive my brain.” One of Jennings's biggest realizations is recognizing
that this mindset made it difficult to follow suggestions that would strengthen her aging body.

One coping mechanism has been found in humor. “My biggest challenge is seeing her so sad and
defeated,” Riley Long stated. “It makes me most happy when she is laughing and smiling even if
she thinks Colonel Sanders is coming for dinner. She usually makes me laugh and smile more
than I make her.”

Another tricky part of living with a degenerative disease can come from those on the outside
looking in. For example, Jennings said, “I am in constant fear that I will get irritable with a well-
intending friend or family member and that they will look at me differently.”

One of the ways that Jaylen Long has tried not to change how he treats his mother as conditions
have progressed is by talking, “I just try to talk to her the same as I always did.” Adapting to a
new normal with his mother has not been easy, but he has continued to manage the best way he
knows, with knowledge. “I feel responsible to be knowledgeable about her disease, and when I
am with her, I make sure she eats and takes her medicine,” he said.

The battles with the stigma that society has set with these diagnoses are exhausting, and it's
important to remember that interacting with someone with Dementia or Alzheimer’s is no
different from talking to anyone you encounter. “Don't make them talk about being sick all the
time. She knows she's sick, and it's not going to change,” Riley Long said. “Respect the person's
privacy and don't share information that they didn't consent to.”

“People look at us like we are weird or even comical, but being in public brings a lot of anxiety
for this reason,” Jennings said. “I am constantly asked if I have cancer because of my frail
appearance, and I sometimes just say yes because it's easier and less embarrassing than this
reality.”

The most significant piece of advice came from Jaylen Long, “The more you treat them like they
are sick, the sicker they will get...Treat them like a person.” Jennings’ perspective may be unique
because of her young age, but this advice can be extended to anyone diagnosed with some
neurological disorder.

Jennings has found comfort in familiar things, “I thrive in familiar places with comfort items
around me such as clothes because they used to belong to someone I love, warm blankets, and
crossword puzzles.”
Physical and cognitive limitations and good and bad days do not define Jennings; she has broken
her silence and remained the warrior she has always been, only being defined by her courage and
grace.