It was a warm afternoon in July 2017 when I first noticed my husband Scott’s right pinky twitching. We were eating popsicles over the sink, and at first, we laughed it off, thinking that he was just feeling cold from the popsicle.
A few weeks later, Scott’s whole hand was trembling, and he could no longer hold a glass of water without spilling. We went to see a neurologist the very next day. After a few tests and brain scans, she broke the news to us — Scott was in the early stages of Parkinson’s.
The tests revealed a low dopamine level. The decreased level of this chemical brain messenger is one of the signs of the disease.
Later in the car, we both broke down in tears and hugged each other tightly. We were both afraid of what this diagnosis meant, but for Scott, it was more than that. It meant his worst nightmare was coming true —he would become a burden to me.
I told him to set aside these worries — I would never see him as a burden. I’d be with him every step of the way. This was my journey, too, just as much as it was his.
In the months that followed, he took the prescribed medications and CBD supplements to help manage the symptoms. He enrolled in programs that offer Pilates, yoga, and weight training at the gym near our house.
We also started making plans to rearrange the layout in our home to prepare for the time when Scott would find it difficult to climb the stairs up to the bedroom.
Despite our best efforts, Scott’s symptoms continued to worsen. By September 2018, his tremors and muscle stiffness had become more noticeable, and he was starting to have difficulty walking.
I switched to a part-time teaching schedule at the university. Someone had to be home with him in the mornings to fix his meals and take him to his physical therapist.
Slowly we found our new normal — a routine built around medications, physical therapy, exercise sessions, and support groups. We volunteered at the Parkinson’s education program in our community. This led us to a whole new group of people with the same struggles we were going through.
Scott tried to help around the house as much as possible, doing simple chores like gardening and tidying up. I could tell these tasks kept his spirits up because he could still be productive somehow.
But by May 2020, he was having problems with balance. He frequently fell, so we decided it was time to move our bed down to the living room, just as we’d planned in the early days following diagnosis.
I also got him a walker to help him keep his balance while walking. Scott balked at the sight of it at first, and it plunged him into a deep state of depression for a while. More and more, the possibility of not being able to walk on his own loomed closer, and it gave him many sleepless nights.
It was this, more than the physical limitations, that was the hardest to handle for me. I didn’t know how to lift him up — I myself was exhausted most of the time.
Thankfully, our friends and our support groups were always there to step in and encourage us just when we needed it most. A strong support network is one of the most crucial things a family dealing with Parkinson’s should have.
Right now, Scott is still able to stand up on his own. But his mobility is limited, and he needs help with the things he used to do easily, like bathing, dressing, and eating.
But we’re taking it day by day. With a disease like Parkinson’s, dwelling on the future can lead you down the rabbit hole of despair. Scott and I still do some of the things we used to do in our pre-Parkinson’s days. We still watch our favorite shows together, go for walks in our neighborhood, and laugh at silly jokes.
If you’ve recently been diagnosed with Parkinson’s, give yourself time to adjust. I know it’s not easy, but it’s essential to stay calm and centered.
Once the diagnosis has sunk in, it’s time to get educated. Ask your neurologist for information and read up all you can about the disease. The more you know, the more prepared you can be.
Find a support group. At first, you might feel embarrassed to tell people about it; Scott sure did in the early days. But being honest about your condition opens up opportunities for people to help and give support. I can’t stress enough how valuable our friends and Parkinson’s community have been in keeping our spirits up.
Get started on physical activities like biking, running, swimming, and other forms of exercise. Don’t wait for symptoms to worsen before fighting back with therapy. Parkinson’s disease progresses at different rates in different people, but the earlier you get into active pursuits, the more you can support your body against losing motor function.
Lastly, take each day as it comes. Life with Parkinson’s doesn’t have to be made up of gray days. Learning to navigate the disease can be challenging, but with a positive attitude, you can find the moments of light and joy to help you endure in the face of adversity.
We’re here for you. Call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) for answers to your PD questions, caregiver support and help finding local specialists, support groups and exercise classes in your area.