At 56 years of age, Curry was diagnosed with Lewy Body Dementia.
Seven years later (now 9), friends of Curry and fighters of Lewy connect in two Facebook groups, and five zoom meetings per week. Together with an Instagram page and the Lewy Body Rollercoaster podcast, people are learning what Curry already knows; there is life after diagnosis, we just live it differently.
What is Lewy?
Lewy Body Dementia (LBD) is a progressive neurodegenerative disease caused by misfolded alpha-synuclein proteins.
We hope…
What you see here comes from our lived experience with Lewy Body Dementia. We aren’t doctors and aren’t giving medical advice. We are people living with Lewy and carers for them. We want you to know there is life after diagnosis, and want to share some of the things that have helped. Anyones’ sharing comes only with the intent to help someone else learn to live well with Lewy.
There is a saying in our community “if you know one person with Lewy, you know ONE person with Lewy”. What helps one person may have the opposite effect on another (ESPECIALLY WITH LEWY). You (and your doctor) know your body best.
The Code of Curry
How did a long haul truck driver bring thousands of people across the world together and give them hope? By being himself, and having a terminal brain disease.
Curry Whisenhunt started the Our Journey with Lewy Body Dementia Facebook page as a way to communicate with his family about his illness in 2016. Now with 3.3k members (4.1K as of Feb 2026), four zoom support meetings a week, and a sibling podcast, it is a community comprised of folks from all over the world where we can talk and share information about the third most commonly diagnosed dementia no one has heard about – Lewy Body Dementia.
Curry is my Lewy mentor and why I’m alive. At the age of 42 in 2021, during a zoom neurological appointment, I learned I had LBD and was told my life expectancy was 5-7 years. My initial reaction was elation because I KNEW something was wrong. I had known for a while, but I was dismissed as anxious, and a woman of a certain age. Devastation followed quickly afterwards when I told my husband the news and I watched his face crumble.
Curry always tells us “there’s plenty of life left after diagnosis, we just live it differently”.
At first I wanted to run into traffic; I was angry, scared, and lost. This man is telling me I can live a fulfilling life when everything I knew blew up in front of me. How?!?! But over time, through attending weekly zoom meetings, I began to believe. That is due to Curry’s honesty, warmth, and service. Now at 45, I quote him to folks walking the Lewy path.
This September, the 14th to be exact, members of the group, some as far as Ireland, will gather in Caney, Kansas to meet our friend/brother/mentor in person.
Curry would never toot his own horn like this, he is too humble, which is why I’m writing to you. I hope what I believe to be the unofficial “code of Curry” can continue to spread, because everyone can benefit, Lewy or not.
Tell people you love them, often.
You can find help, it just may take a couple of tries.
Stand up for yourself, your experience is valid.
Eat all the Reese’s you can.
Life looks different for everyone, there is no wrong.
I would love for people to know about Curry because especially now, we need to look for the helpers. Curry is a helper.
~Megan Ferguson-Koci
Megan and Curry at the first meetup in Caney, KS September 2024
Our Journey with LBD 