Learn

Learning, here, looks a little different. It’s found in lived experience, in honest conversations, and in the quiet ways we begin to understand what we’re carrying. Through stories, the podcast, and reflections on life after loss, this space is here to help make sense of it all—at your own pace, in your own way.

What is a neurodegenerative disease, really?

A neurodegenerative disease is more than a diagnosis—it's a gradual change in how the brain works. As brain cells become damaged, abilities like language, decision-making, movement, memory, behavior, and emotional regulation can begin to shift.

But no two journeys unfold the same way.

Some begin with forgetfulness, while others start with changes in personality, speech, or movement.

Behind every diagnosis is a person who deserves dignity, and behind every person is a family learning to navigate a new reality with courage, grief, and love.

Understanding the disease helps us make sense of what's happening. Understanding the human experience helps us care for one another through it.

Understanding Neurodegenerative Diseases

Frontotemporal Dementia (FTD)

Primarily affects behavior, personality, language, or movement—often beginning before age 65.
Alzheimer's Disease

Typically begins with memory loss before gradually affecting thinking, language, and daily function. Strikes normally over 65+
Dementia with Lewy Bodies

Can cause changes in thinking, visual hallucinations, movement symptoms, and fluctuating alertness.
Vascular Dementia

Caused by reduced blood flow to the brain, often affecting thinking, planning, and processing speed.
Parkinsons Disease with Dementia

Dementia that develops after Parkinson's disease, affecting memory, attention, and decision-making.
Progressive Supranuclear Palsy

A movement disorder that commonly impacts balance, eye movements, speech, and swallowing.
Corticobasal degeneration (CBD)

A rare condition affecting movement, coordination, and sometimes speech or thinking.
Amyotrophic Lateral Sclerosis (ALS)

A progressive disease affecting the nerves that control voluntary muscle movement, speech, swallowing, and breathing.

“My Experience With…”

A collection of lived experiences—across the many layers of neurodegenerative disease—shared with honesty and care.

These are the moments people don’t always know how to talk about, but feel deeply - all the same.

Take what you need, leave what you don’t—and know you’re not alone in it.

My Experience With

Advocacy and Research Groups

I’ve always imagined a place for caregivers to land in the middle of the night—when everything feels heavy and the questions don’t stop.
No searching. No spiraling. Just a place where the information already lives.

What you’ll find below is a curated collection of resources we trust—organizations, groups, and people doing this work with care.
If there’s someone who held you up and should be here too, we’d love to know.

Learn More