Dystonia, Gastroparesis, and Stiff Person Syndrome: Navigating My Ever-Changing Life

By Patricia Antion

In this blog post, guest blogger Patricia Antion shares the story of how her life has been altered by the illness, pain, and muscle spasms she experienced over a period of years that eventually led to her being diagnosed with dystonia, a movement disorder, gastroparesis, a digestive disorder affecting the stomach muscles, and Stiff Person Syndrome, a rare nervous system disorder affecting only one in a million people. 

Looking back on my life as I deal with my current health challenges, I realize my vocations were my training ground for the future. Spending more than 20 years as a sign painter and 14 years as a retail manager have taught me there are times when you have to step back and readjust when faced with adversities. The ability to analyze the situation, gather data, and make the necessary alterations has helped me to navigate my ever-changing life.

Over several years I had been treated for a variety of symptoms and disease. I had many appointments, tests, and medicines as well as physical therapies, and had shuffled through several specialty doctors, yet my symptoms of pain and muscle spasms continued to worsen. In August of 2016 I finally made the life-altering decision to leave a great job as a manager of a hospital gift shop due to my health issues. 

That decision was a result of having been diagnosed with dystonia in 2012, a disease that causes debilitating muscle spasms in various parts of the body. My hands, legs, neck, and torso as well as my eyes have been impacted by this disease. The muscle spasms can come on at any time or any place. I can be standing, sitting, or sleeping as this disease knows no boundaries and has no clock. Attacks can last for minutes, hours, or days. Over the years I learned to adjust my lifestyle by taking a slower approach rather than going full speed ahead. 

Then in 2013 I was diagnosed with gastroparesis, a condition that affects the stomach muscles and prevents my stomach from emptying properly. Swallowing had become a problem and I was having issues with speech due to irritation of my vocal cords and digestive problems. Thankfully, a handful of specialists helped navigate me through this storm. While I continue to deal with symptoms daily, a combination of medications, proper eating, hydration, and therapy have helped. 

It turned out that leaving my job in 2016 was a blessing as my mother had suffered a stroke a few years earlier. Not working gave me the opportunity to spend quality time with her during the last five months of her life. Two weeks following her death my symptoms worsened. A combination of stress and lack of sleep had caught up with me. This was certainly not ideal given I was dealing with gastro-related and muscle disorders. 

I spent five days in the hospital getting treatment to control the muscle spasms and to help my suppressed immune system. (I had been battling type A and B flu just before being admitted.) At this point I knew I was dealing with a bigger issue and needed to ask more questions regarding new and ongoing symptoms. 

I learned I was dealing with not only a gastrological disorder and dystonia but also with Stiff Person Syndrome (SPS), an extremely rare disorder that affects only one in a million people. SPS is an acquired neurological disorder that results in progressive muscle stiffness and repeated episodes of painful muscle spasms.

With help from my family and primary care physician I was able to meet with a neurologist specializing in SPS. After more than a year of traveling to Maryland from my home in West Virginia, many tests, lots of questions, and meeting with a variety of specialists (neurogastroenterologist, neuropsychologist, cardiologist, otolaryngologist, voice specialists, and physical therapists), I’ve seen improvements. Some of the crazy electrical charges I’ve experienced have slowed down and my sleep has improved. Balance has remained an issue, I continue to have an exaggerated startle response to touch and sound, and the muscle spasms are ever occurring. 

I am hopeful that with the current medications and treatments my symptoms will improve in time. I’m currently participating in a clinical trial for gastroparesis, which I hope will help improve the lives of others who are suffering from gastroparesis in the future.

In the meantime, I continue to live life to the fullest doing what I can, not what I think I should be able to do. This is one of many lessons I’ve learned through counseling over the past year. My hands may not guide a brush as easily as they once did or endure hours of painting, my legs may not walk as far through a forest or run a few miles, my voice may not be as strong as it once was, but my message is still there. Sharing my love of art and nature with my grandchildren has become my passion.

Patricia Antion is retired from managing the West Virginia University Hospital Gift Shop. She lives in Morgantown, West Virginia, with her husband. She recommends the Dystonia Medical Research Foundationthe American College of Gastroenterology, and the National Institutes for Health Genetic and Rare Diseases Information Center for more information about dystonia, gastroparesis, and SPS.

Thank you, Patricia, for sharing your story of perseverance and hope with our readers.

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others learn about your struggles and increases awareness and understanding. We will help promote your website and social media accounts as well as your favorite advocacy group. Contact us to get started sharing your story now!

Leave a Comment