Meet the True Bad Boys

Parkinson’s disease is a degenerative neurological disorder that affects one in one hundred people over age sixty. Men have a somewhat higher risk than women. While the average age at onset is around sixty, some people are diagnosed at forty or younger.

Parkinson’s is a disorder of the central nervous system that results from the loss of cells in the brain that make dopamine. Dopamine is responsible for transmitting signals that allow for coordination of movement. Loss of dopamine leaves patients less able to direct or control their movement.

People with Parkinson’s disease can also experience difficulties outside of movement, including memory problems and in later stages, even dementia (significant memory/thinking changes that impact daily life). And while Parkinson’s itself can be the cause of dementia, there’s a lesser-known but related cause of dementia called Lewy body dementia (LBD).

LBD is not as well-known as Alzheimer’s, but it is the second most common form of dementia. Persistent and recurring visual hallucinations (seeing things that aren’t there) are often an early symptom. More than 1.4 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder.

The disease did get a boost in publicity when Robin Williams was diagnosed with LBD after his suicide in 2014, but far more public information is needed.

My dear husband, Richard, had both. At least this is what we know without an autopsy, which was the furthest thing from my mind at the moment when such a decision should have been made.

I learned all I know so far from the Michael J. Fox Foundation, the Lewy Body Dementia Association, much research, and Richard’s doctors.

Here’s the headline: These are horrible diseases that you wouldn’t wish on your worst enemy. They are unwelcome invaders into your once normal and happy existence. They will wage a war that you will not win. Not yet, anyway. But there are tools to fight the battle.

I wrote Parkinson’s: A Love Story with Dementia for Dessert as part of my own healing process. My goal is to help others on their journey with Parkinson’s and LBD and to share the idea that love stories come in many forms.

The book is a combination of my journal, blogs, and reflections. It’s not exactly a comedy, but I hope it will warm your heart.

More on bad boys later.