A few weeks ago, I met with a couple I have known for years who are considering a building project with my firm. During the course of our conversation, they mentioned they hadn’t seen my husband Ben lately at the local museum where he has long worked.
I have been dancing around this question with others who asked about Ben, but I finally decided to come clean with this couple. What’s happened to Ben is also why, in June 2024, I resigned from the Community Preservation Committee in town only two weeks after being named the chairman, explaining nothing more than it was for personal reasons.
Ben and I are fairly private people, but I’m discovering that sharing deeply personal matters isn’t always a bad thing. Ben and I have been on a journey, and I’ve decided to talk openly about it in hopes it may help others too.
In May 2022, I crossed the Rubicon into my 60s. The year before, when Ben turned 60, he and I – like so many people our age – started talking seriously about our future. “What’s the plan?” we asked each other. My initial idea was to retire from full-time work in 2026 when I turned 64, selling my business to one of my employees. I would pick up more bartending shifts, consult with former employees, and spend much more time in the garden. Ben? He wanted to work till 70 at a job he had loved for 30 years.
We set the plan in motion, meeting with our financial planner and estate planning attorney. But you know what they say about the best laid plans?
In 2022, we celebrated my milestone birthday, in part by making an autumn trip to Iceland and Greenland long postponed by the pandemic. We toured the Christmas markets in France and Germany. Little did I know what 2023 would bring to our lives.
In March, I noticed a tremor in Ben’s hands. Nonchalantly, I asked him about it. Ben, characteristically, delivered the classic response: “Nothing, why?” I didn’t let it go. “Do you think you should get it looked at?”
What followed was a sequence of conversations I’m sure have been going on with couples since the dawn of time. My insistence he talk to a doctor versus his insistence nothing was wrong played out for weeks. Finally, at a scheduled appointment, Ben brought it up with his physician. Perhaps the tremor was caused by a drug interaction, we thought. But our world came crashing down when the doctor informed him no drug interaction could account for the tremor. The possibility of Parkinson’s disease was introduced into our lives.
Most folks with no personal experience know Parkinson’s from the journey of TV actor Michael J. Fox, or more recently from the character played by Harrison Ford on the comedy “Shrinking.”
As defined by the Mayo Clinic:
Parkinson’s disease is a progressive neurological disorder where brain neurons break down, causing a loss of dopamine, which leads to movement issues, tremors, rigidity, and balance problems. Usually affecting adults over 60, it often starts on one side, with early signs including subtle tremors, small handwriting, or reduced arm swing.
But Parkinson’s is not so easy to diagnose. There is no simple blood test to confirm it. Even more sophisticated testing is not necessarily conclusive. Our first step was to find a neurologist. Easy right? To us, this was an emergency. But nope. Getting an appointment with a neurologist often takes months. To make our lives simpler we chose one located in Plymouth and waited for our first appointment in late summer of 2023.
At our first appointment we discovered the first step to a diagnosis was to wean Ben off any medications that might affect an MRI brain scan. One of Ben’s daily meds was on the list; he wasn’t fully free of the drug until the beginning of 2024. Another 30 days were required before the test could be administered. Finally, in March 2024, a full year after I had first noticed the tremors, we were told that the testing wasn’t definitive but it showed “markers” of the disease. And that’s how we found out what a miserable, sneaky bitch Parkinson’s is.
Most Parkinson’s patients begin a regimen of medications known as carbidopa and levodopa taken throughout the day. Ben began the meds. The tremors subsided but other issues arose. “Miss P,” as I sometimes call Parkinson’s, had other tricks in her bag. Flat facial affect and exhaustion came to light. Our close friends began to notice, especially the facial effect. Was Ben mad at them or did he not find the joke funny? We chose to let them know what was going on but otherwise kept his diagnosis quiet.
In May of 2024, in addition to taking on the chairmanship of the CPC, I was still a board member of the Historic District Commission. I was also attending various meetings for projects in front of the ZBA or Planning Board. This meant I was usually out four weekday nights and Ben was forced to fend for himself for dinner. This is one way Miss P gets you. He was often so exhausted he could do little more than have a bowl of cereal or go without dinner entirely. I came home one night to find him asleep and the stove burner was still on. Something had to give, and unfortunately it was the CPC and HDC.
The remainder of 2024 was uneventful as we learned to live with our new roommate Miss P. She remained on the sidelines for a while, but stiffening muscles caused Ben to pull out a cane he had used years ago after wrenching his back. Often, though, Ben would forget it as Miss P planned her next move – which was spectacular.
On a routine trip to the basement in March 2025, Ben fell to the bottom of the stairs. He managed to climb back up and drive himself to the emergency room. The fall resulted in several broken ribs and a broken collarbone.
I got a call from him which began with “Don’t freak out but….” Our discussions were not pleasant. Ben is fiercely independent. “Pick yourself up and dust yourself off” has always been his motto. He did and I did. Ben was forced to take time off as his ribs and collarbone healed. We also moved to our guest room bedroom on the first floor to eliminate the need to navigate stairs.
The summer was largely uneventful; we began regularly attending the Parkinson’s support group in Plymouth. Hosted by Janet Enos, it has become an invaluable resource for us. Held at the public library, the meetings are the first Friday of the month from 1:30 to 3:00 pm. We discovered neighbors and made friends who are on the same journey. I also joined a twice-monthly caregivers’ group at the Salvation Army from 1-3. I’m now part of a group of texting buddies who support each other in times of crisis.
At one session of the caregivers’ group, one member mentioned her husband had been stationed at the Brunswick Naval Air Station in Maine. It was common during the 1960s to dump the firefighting foam into the ground. The wife was convinced the water in Brunswick was contaminated as a result. Perhaps coincidentally, perhaps not, Ben was born on the base in 1961.
During the summer, as Ben’s ribs healed, he slipped in the shower. No bodily damage, but we added grab bars. After another fall in October, we decided to replace the tub with a walk-in shower. My contractor Eric Thorson came to the rescue again. Finally, in November, he had another mishap, breaking additional ribs, which effectively prevented Ben from finishing out the work season at the museum. As far as we were concerned, 2025 could not exit the building fast enough.
With a new regimen of meds, we hoped 2026 would be better. It surely couldn’t be any worse. Medications for Parkinson’s are trial and error. And they come with risks. For some, the meds are a life saver, for others they work for a while and then stop doing so. Sometimes they don’t work at all, and in some cases, they can produce dementia symptoms.
But soon Miss P. struck in an evil way. She makes you forget you have limitations; she makes you forget simple tasks take twice as long; she makes you forget the way you are accustomed to doing things can’t be done in the normal way anymore. The simple task of putting pants on isn’t simple anymore. It requires a seated position, it requires thought, it requires time.
In the wee hours of January 14th, Ben fell backwards, coming down hard and striking his head on a door frame. I rushed to his assistance. There was blood everywhere, but true to Ben’s nature his first words were “I’m fine.” He wasn’t. The ride to BID Plymouth quickly became a rush to get him to BID Boston to deal with a brain hemorrhage.
And now as the calendar has turned to May, Ben and I are navigating a myriad of hospitals, rehabs, doctors, medications. His life is forever changed. I’ve learned way more about healthcare than I could ever imagine. I have learned you have to advocate for yourself and loved ones in the healthcare system. I have learned being polite sometimes doesn’t get you what you need. And most of all I have learned – only because people screamed it at me – you need to put your own oxygen mask on before you help others.
I’ve written too many articles for the Independent from a hospital bedside. It gave me a distraction as we waited for tests to come back, medications to start working, or simply for Ben to get better. As we enter our next phase of Parkinson’s, I’m struggling even more to juggle all the aspects of my life along with Ben’s.
I guess this is my way of telling you I’m stepping away from the Independent for a bit as Ben and I continue to battle Miss P and the healthcare system.
I am not looking for pity or help…far from it. I have my support system securely anchored in place. But I hope in sharing this very personal journey, someone who reads this might realize they are not alone. And I hope others in our community will recognize that every day in some corner of Plymouth someone is facing difficulties or struggles of unfathomable proportions. We need to be kind, and we need to have compassion. You never know what someone is going through.
Architect Bill Fornaciari is a lifelong resident of Plymouth (except for a three-year adventure going West as a young man) and is the owner of BF Architects in Plymouth. His firm specializes in residential work and historic preservation. Bill can be reached by email at billfornaciari@gmail.com.