Hacking COVID: MDA Ambassador Edition, Part 1

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve “hacked” situations like getting groceries and receiving assistance, how they’ve maintained contact and safety in an uncertain time.

MDA encourages all families to follow the guidelines put forth by the U.S. Centers for Disease Control and Prevention. Access our latest news and resources on our COVID-19 resource page.

Today, a couple of our former National Ambassadors check in.

Leeann Fortenberry is mom to 2018-2019 MDA National Ambassador Faith Fortenberry, 8, who lives with spinal muscular atrophy (SMA). The family resides in Waco, Texas.

How has the threat of COVID-19 changed your day-to-day routine?

The threat of COVID has changed our lives dramatically. We are very routine folks, so things being like this have been a bit of an adjustment. [During quarantine I still taught] and Faith [was] doing distance learning, so we had to learn to create a new schedule and do things differently. I’ve learned to shop online, I’ve learned how to Zoom, and we’ve spent many hours on FaceTime to have human connections. 

How have you adapted to those changes? What tricks have you discovered to make things work?

We have adapted by making our own schedule at home. We do Faith’s stretching and stander time in the morning. [We did] half of her schoolwork before lunch and the other half afterward. I had to learn to try to get up early to do my teaching and grading and then continue late in the evening after [Faith went] to bed. We had incentives like going to Sonic for a soda or ice cream.

What has been the hardest change?

Our hardest change is not being able to dine in restaurants and see our friends. Usually on Friday evenings, we gather in large groups with friends and their children to celebrate the end of another school week. We are longing for that human interaction again.

How have you been coping?

I have been coping [by] spending time reading my Bible, praying, and [having] weekly Zoom meetings with girlfriends. We also take lots of walks when the level of frustration with schoolwork gets to be a little too much for Faith.

What new routines might you keep in place beyond the COVID era?

I think the routines I will keep are the same kind of schedule for the summer, minus the schoolwork. I like that we get up and do her stander and exercises early, where we used to do those after our fun each day. I like that we are getting up and dressed for the day when we typically we would have laid around in pajamas until lunch on a summer-like day. I also plan to continue weekly Zoom time with the friends I am unable to see. 

2018-2019 MDA National Ambassador Justin Moy, 19, lives with congenital muscular dystrophy (CMD). He resides with his family in Concord, Mass.

How has the threat of COVID-19 changed your day-to-day routine?

COVID-19 has definitely changed my day-to-day schedule because all of my classes and meetings are all now remote. I am living at home now, so my routine is a lot more flexible.

How have you adapted to those changes? What tricks have you discovered to make things work?

I try to go on walks outside at least every other day so I can get away from my screen. Besides breaking up always being at the computer, I think at least having a semblance of a regular schedule helps to keep the days from melding together.

What has been the hardest change?

The hardest change has been not getting to interact with people outside my family face-to-face. I’m a really social person, so not getting to see different people has definitely been the hardest.

How have you been coping?

I’ve been coping by keeping myself busy playing the piano. I’ve also been just trying to have levity and fun in the videoconferencing meetings I have had. In all of my classes, I’ve luckily had really fun group mates, which has made this whole quarantine easier.

What new routines might you keep in place beyond the COVID era?

I will definitely be continuing to go outside more often. It’s really nice to not be on a screen!