Support Hotline: (866) 737-5999 info@multiplesystematrophy.org

By: Topher Schott, MSA Coalition Care Partner Representative

I’m hundreds of miles away from my mother who has MSA…What can I do to help?!

One summer day in 2017, I got a phone call from my sister letting me know that my mom’s doctor’s appointment for Parkinsonian-like symptoms resulted in a probable diagnosis of this disease…Multiple Systems Atrophy.

I googled it…whoops! It was such a shock!

At the time, I was living in Virginia, and my mom was living by herself in rural Maine. Luckily, one of my older sisters lived in New Hampshire not too far from my mom.

I remember continuing to google “MSA” and going down that rabbit hole of information and reading patient experiences was not pleasant. I imagine this is what many people do when they first find out about a loved one’s diagnosis of MSA.

Now it’s 2022, and my mother has moved to suburban Maine to be less isolated. Having recently married, I moved within Virginia, but even after we both moved, I was still hundreds of miles away from my mother.

My mother’s MSA symptoms are progressing, but she is still able to live an independent life. I often wonder what I can do to help my mom cope with this horrible disease.

Pre-COVID, we liked to travel together as much as possible, but with COVID safety restrictions and guidelines, this has been difficult to do in the past couple of years.

This is where simple basic needs come into play for us as humans. It is important to continue to connect with our friends and family during this pandemic, and it is even more important for those with rare and already isolating illnesses like MSA. While I may not be able to drive her to doctor’s appointments or be there for her in-person in times of need or in times of fun, I can connect with her digitally over the phone or through Facetime!

Sometimes, it feels weird for me to be removed from observing all the day-to-day symptoms and affects that MSA has had on my mother. I always make the effort to ask how her doctor appointments go or how she is feeling after an infusion, but we don’t discuss MSA much outside of that when we’re on the phone.

I am first and foremost her son. She enjoys hearing about my life, and she shares with me what is going on in her life. A fairly simple chat on a normal basis goes a long way!

I know I am blessed to have my mom’s MSA progression be relatively slow, but we all know that we need to do our best to enjoy these times as much as possible. We may be unable to meet in-person during this Omicron variant peak, but it’s still fun to plan for our next adventure in the coming months!