An Alert, Well-Hydrated Artist in No Acute Distress
An Update from Hadley
It’s been nine months since I published the epilogue for my story about Hadley Ferguson, my intrepid friend with multiple system atrophy. I thought you might appreciate this update in her own words, written for the 2017 MSA Coalition’s fundraising effort on this Giving Tuesday.
Dear friends and family,
I am 40 years old, a mother to a beautiful daughter, a wife to the most amazing husband, a daughter to wonderful loving parents, friend to many supportive dear people, and I have Multiple System Atrophy (MSA). 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, but one that I could stay ahead of. I got involved in the Parkinson’s community immediately. I traveled back and forth to Portland, OR, where my specialist was, and I saw a huge contrast between programs offered to people with Parkinson’s in Portland, compared to what was available in Montana. Within a year of my diagnosis, 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 started to show some signs that were not typical of a classic PD. I went through another year of reevaluation and they concluded at the end of that year that I actually had an atypical form of Parkinson’s called Multiple System Atrophy. This was a difficult diagnosis for my family and me, but we remain optimistic that I will not follow a typical path and I will also be atypical in fighting this disease.
I have had a wonderful career as a freelance painter. In the past 15 years I have had opportunities that I never dreamed were possible. For my BFA studies, my emphasis was in sculpture with a focus in collaborative community installation pieces. My love of collaborating transitioned in my professional life from the installation work, to painting commissions for private and public entities, and I enjoyed working with committees and individuals on their vision for their projects. As my health changed, so did my ability to work on these large painting commissions. Several years ago, I finished my last large public work. I decided it was time to acknowledge and accept my physical changes and the fact that large painting commissions were no longer something I could keep up with. Although I am not able to do the work I was doing a year ago, I see these changes as an opportunity instead of a casualty. I have a new door open and this is one of the gifts to come from my MSA. I have reconnected with my passion of working with community and connecting others through art by working on smaller projects and creating smaller personal works. I realized I don’t need to do all the physical work of large art pieces to enjoy what I do. It is the process and collaboration with others that connects me with my artistic passions. There is no challenge MSA can throw at me that can take that away. MSA has helped me see past what I used to think was important, and enjoy the small moments life has before me today. I cherish these moments of creativity and time connecting with others. The greatest gift of all is the love MSA has given me. It stripped away all the noise of my busy life and gave me cherished time with those I love. I am so thankful to my friends and family who surround me with supportive love every day.
I am dedicated to helping all who are touched by MSA. The MSA Coalition was the first place I went when I was looking for answers and information about this disease. They are a valuable resource to families who are experiencing MSA, as well as medical professionals who are caring for people with MSA. They are also working hard to fund research projects to help people with MSA. As we put time and energy into educating and advocating for others with this disease, we also need to put time, energy and resources into funding research that will advance our care and treatment options with the ultimate goal of prolonging a fulfilled life with our loved ones, and one day even finding a cure for this disease. As someone who has MSA, as well as the Patient Representative on the MSA Coalition Board of Directors, I ask that you please join me in this fight!
With much gratitude,