Patient, Wife, Mother, Artist
I am hopeful about the future, but am excited about today
I was originally diagnosed in 2010 with Young Onset Parkinson’s disease. At that time I had a lot of energy, and I saw my diagnosis as a challenge, one that I could stay ahead of. I got involved in the Parkinson’s community for support and education, and I traveled back and forth to Portland, OR, to see my specialist. One thing that was immediately apparent was the contrast in programs offered to people with Parkinson’s in Portland compared to what was available in Montana, where there is very little in the way of resources and support. To help address this lack, I co-founded Summit for Parkinson’s and worked to create programs to bring information about Parkinson’s disease to people around Montana.
In 2012, my Parkinson’s symptoms began to change in ways that were not typical of classic PD. I went through another year of reevaluation, and my doctors concluded that I actually had an atypical form of Parkinson’s called Multiple System Atrophy (MSA). This was a difficult diagnosis for my family and me because Multiple Symptom Atrophy is more difficult to treat and manage than PD. However, we remain optimistic that, just as my diagnosis is atypical, I will also be atypical in fighting this disease, and I have not let it stop me.
Over the past fifteen years, I have had a wonderful career as a freelance painter and have had opportunities that I never dreamed were possible. As a student, my emphasis was sculpture with a focus on collaborative community installation pieces. This love of collaboration followed me into my professional life through my painting commissions for private and public entities, working with committees and individuals to realize a shared vision for their projects. However, as my health began to change and the symptoms of MSA increasingly affected my ability to work, these large-scale painting projects were no longer something I could keep up with; one year ago I finished my last large public work.
Although I am not able to work in the way I am accustomed, I see this change as an opportunity instead of a casualty. A new door has opened; this is one of the many gifts I’ve received since developing MSA. My collaboration with Carolyn Maier in Forging Resilience has given me an opportunity to reconnect with my love for working with others through art. Through this process, I have realized that I can enjoy my artistic passions with shared responsibility.
As I reflect on my experience, I find that the greatest gift of all is the love MSA has given me. It has stripped away the noise from my busy life and has given me cherished time with those I love. I have gained a new family of PD and MSA friends, my long-term friendships have grown deeper, and my family bonds are so much stronger. The relationship between my mother and me has taken on new meaning in the face of this illness. The time I spend with my own daughter and my husband is more precious than ever. There is no challenge MSA can throw at me that can take these gifts away. MSA has helped me see past what I used to think was important and enjoy the small moments life gives me each day.
Hadley Ferguson, Age 39, USA
Multiple Systems Atrophy