My PD Story

My husband spent his career building commercial and industrial projects around the country. Many years ago, he lost his sense of smell, which he attributed to being around chemicals on project sites. He also developed chronic constipation, which we thought was related to traveling and not maintaining a proper diet.

In 2018, while living in Atlanta, GA, for a project, he lost 20 pounds. We thought it was because he was cooking for himself and not eating second helpings. In 2019, we were in London, where you do a lot of walking. I noticed that he was shuffling his feet, but he said it was his shoes or the flooring. This continued when we returned home.

One day I noticed a slight tremor, but he said it was just the way he was reaching for something. He didn’t take my concerns seriously until 2020, when he was at work and was too stiff to put on his jacket and had to ask for help.

We saw a neurologist early in 2021, who referred us to a Movement Disorders Specialist. That specialist made the diagnosis of Parkinson’s disease, saying that he had probably had it for 10 years.

My husband’s movement symptoms have responded well to medication. However, he quickly began to exhibit non-movement symptoms ranging from anxiety and language issues to now symptoms of dementia.

As for myself, along with being his care partner — and more recently, his caregiver — I try to turn our mess into our message by serving as an Ambassador for the Parkinson’s Foundation, an Executive Board Member for our local chapter and a Research Advocate.

My husband’s father also had Parkinson’s disease, and we have two daughters, so we were interested in learning whether there might be a genetic factor involved. We enrolled him in PD GENEration, the Parkinson’s Foundation genetic study. The process was incredibly easy, and his results did not show a genetic link.

It felt great to participate, both for us and to help advance research. It was also meaningful to be able to tell our daughters that no genetic link was determined.

Explore ways to volunteer with the Parkinson’s Foundation and become a Parkinson’s Foundation Ambassador. Sign up now.