Hello, my name is Teresa Scruggs-Dyer, and I want to share some of my experiences with Multiple System Atrophy (MSA). There are 2 types of Multiple System Atrophy, MSA-P (parkinsonian) and MSA-C (cerebellar). In July 2021, I was diagnosed with MSA-P.
In early 2018, I began experiencing unusual physical symptoms such as low blood pressure, bladder issues and severe constipation. Additionally, my handwriting became noticeably smaller and harder to read. Also, while I have always been a soft-spoken person, I became increasingly aware that people were having difficulty hearing me. I knew that something was not right and made an appointment to see my primary care physician in August 2018. However, all these symptoms continued to get worse. In August 2019, I was referred to a neurologist, and this is when I was first diagnosed with Parkinson’s. My father had been living with Parkinson’s for 13 years, so I had some familiarity with this disease.
In February 2020 my husband and I moved to a different city. I was blessed to find a neurologist who was also a movement disorder specialist. I was fortunate to get a job as an administrative assistant for a school district. I knew that my health was deteriorating too quickly to be a typical case of Parkinson’s. I began to have balance issues. I was falling frequently. My hands became so shaky that I couldn’t even write my name. My speech became increasingly slurred, and the volume of my voice was so low that it was difficult to be heard. Previously, my issues with low blood pressure occurred mostly in the morning before work, but I began having low blood pressure during my workday. There were many days that I would go to work and just feel terrible. Luckily, I was blessed to have a very compassionate and caring boss. Sometimes I went into my boss’ office and all I could do was cry (this too is a symptom of MSA-P). It got to where my boss would have me take my blood pressure before leaving the office, and if it was low, I would wait for it to stabilize before I left the office. Once I made it home, I would text my boss to let her know that I had arrived safely. I worked there for a little over a year, and I knew it was time to retire. It wasn’t fair to me, my family, my employer or my co-workers for someone in my condition to still be working.
I retired in June of 2021 at the age of 60, earlier than I was planning. I also wasn’t planning to spend my retirement dealing with MSA, taking 36 pills a day and doing speech exercises. I was hoping to spend my retirement doing more of the things that I love, especially travelling. It would be very easy to get depressed living with such a debilitating disease but instead I embrace every day with the many positives in my life. Some days are good, and some are not so good.
I love spending time with my family and friends. I have taken up photography as my primary hobby, and I get great joy from photographing wildlife. I am blessed to have a great support team, my family, friends, and God. I tell people God must have given me an extra layer of protection because as many times as I have fallen, I have not broken any bones yet. I have had a few concussions, cracked ribs and lots of bruises. He has helped me recover quickly from Covid-19 twice.
If I could offer any encouragement to those experiencing similar issues to mine, I would recommend to keep moving as much as possible and focus on anything positive. That is difficult; sometimes I cannot help but cry, but I keep moving forward. I am still blessed to be loved by God, family and friends.
Thanks for allowing me the opportunity to share my journey with you.
Teresa shared her story and photos for The MSA Coalition’s Essay Contest in March 2023 for MSA Awareness Month.
