Milton’s Charlie Fleetwood pens first book

“Don’t worry, I’m not bored of you.”

So says former Milton Councilman Charlie Fleetwood, sitting in his specially purchased recliner at his home on Bay Avenue. Fleetwood says this as his head is facing the floor and his eyes are shut. 

No, he is not falling asleep. The posture is the result of a rare neurological disease Fleetwood is battling. Corticobasal degeneration is a sister disease to Parkinson’s syndrome. The disease causes areas of the brain to shrink and nerve cells to degenerate over time, meaning Fleetwood is not able to perform basic functions such as standing and walking unassisted, so he uses a wheelchair. He cannot comfortably raise his head for very long. He cannot stand in the shower by himself without risk of falling down. 

His wife of more than 50 years, Barbara, serves as his primary caregiver. To help make Charlie’s life comfortable, she has purchased a van, the recliner and a machine that helps him stand up. To do that, she has to strap Charlie to the machine, which then raises his body up to standing position.

“I never thought retirement would be like this,” she said. 

Corticobasal degeneration is not a common disease. Barbara said to her knowledge there are only 2,000 documented cases. Lack of knowledge about the disease has made it difficult for the Fleetwoods to find out what was going on with Charlie. Four years ago, while he was still serving on Milton Town Council, Fleetwood started experiencing falls around his home. He was diagnosed with spinal stenosis, a narrowing of the spinal cord that can lead to nerve damage. That was around the time he started using a wheelchair. After his condition worsened, and with continued visits to neurologists, Fleetwood was diagnosed with corticobasal degeneration. 

Fleetwood said his symptoms include getting cold very quickly, falls and shaking. 

“No one knows how to treat it,” Barbara said. 

Besides Barbara, Fleetwood gets some assistance from friends such as Larry Lieberman, a member of the Milton Planning and Zoning Commission, who takes Fleetwood for walks and gives Barbara a break. 

Service to the town has long been important to Fleetwood. He’s done three stints on town council, headed the Milton Chamber of Commerce, helped organize Friends of the Milton Public Library and served as its president, was president of Milton Community Foundation and helped organize Concerts In The Park, among other achievements. He resigned from the council in October, but not before his fellow council members voted to name the gazebo in Milton Memorial Park after him. 

History has long been one of Fleetwood’s passions. He helped raise money for the John Milton statue in Mill Park and helped establish the Governor’s Walk, and now he’s planning to present some of Milton’s history to a new generation. 

Fleetwood has written a children’s book called “Tales of the Broadkill: Samson’s Saga,” in which a 400-year old turtle named Samson relays to Fleetwood the history of Milton from the time of Native Americans, through the first European settlers to the the Revolutionary War era. Fleetwood said the book is for kids at about a fourth-grade reading level. 

He said he had the idea years ago when he was working with the Milton Chamber of Commerce.

“We used to publish a little newspaper every month called the Chamber Clipper,” Fleetwood said. “I started writing stories, and people would come up to me and say they really liked them.”

About four years ago, he decided to assemble a book that wove together stories of Milton he had either researched or heard over the years. Fleetwood said he pitched the book at a fourth-grade level because that is usually when kids begin learning about history.

“It’s about where I read at,” he cracked.

The book will be out, Barbara said, in mid- to late October with copies available at the Friends store in the Milton library and on Amazon. Illustrations are by the late artist Julie Baxendell. About 200 copies have been printed, but the Fleetwoods hope the book will be successful enough they can do another printing.

Fleetwood is already in the planning stages of his second book, which Barbara hopes he will be able to complete.

“It all depends on how he’s doing,” she said. “It’s his book; it’s his story to tell, and I’m really proud of him.”

Reflecting on everything that has happened to him over the past four years, and the publication of his book, Fleetwood said, “If there’s some way you want to go, or something you want to do and you say, ‘Wow, I’ll wait until I’m retired and I have the money’ – don’t wait. Don’t put it off. Just go and do it.”