MDA Ambassador Guest Blog: How I Stay Active and Involved in My Community

Sundae Duyssen is 18 years old and lives in Western New York with her family, on their 800 acre cash crop farm.  She was diagnosed with congenital muscular dystrophy around the age of 2 and completed genetic testing at the age of 13, where it was discovered that she has type LMNA. She has been a wheelchair user since the age of 2 ½, due to low muscle tone in her legs. Sundae enjoys spending time with her family and her doodle – Bailey, shopping, using her embroidery machine, and designing invitations on her iPad.

Sundae Duyssen

Here in Western New York, it will soon be winter, and we usually have quite a bit of snow. I love the cooler weather, so when I get a chance to go out, I do! I try my best to avoid isolation, especially in the wintertime. I have an aide that assists with my day-to-day activities, whether they be at home or out in our community, and the rest of the time, my mom is my caregiver. Many of my family members are trained to be with me as well, which allows me to get out and about in our area several times a week.

Earlier this year, I was bedridden for a couple of months because my body became dependent on my bipap machine to assist me with breathing.  I now wear my bipap 24 hours a day, which gives me more energy to get out of the house and be active. During those months of isolation, I wrote a book about disability inclusion. I also had many visitors during this time period. I wasn’t sure I would ever be able to get back out and do the things that I enjoy doing.

My community assisted with getting me out of bed and getting back to my regular routine and daily day-to-day activities. My mom did some research and found battery packs that were specifically used for the bipap, but they were pretty expensive.  Friends and family came together to assist us in purchasing a couple battery packs for me, so that I could be mobile and not stuck in my home. My aunt had a friend who welds, and he offered to make a shelf on my wheelchair so that it would hold my bipap machine. This has enabled me to get back to being active and doing the activities I like to do.

This last year, I’ve held a couple of large fundraisers for our local Children’s Hospital, a nursing home in our town, and for the Muscular Dystrophy Association. I reached out to community members and businesses through my Facebook and Instagram accounts, asking for their help for each of these fundraisers. We came together and collected well over 300 items (toys, clothing and games) for the Children’s Hospital. In February, my community assisted in collecting blankets, socks, and crossword puzzles to give as gifts to each of the 135 residents in the nursing home for Valentine’s Day.  We were also able to give items for their wingo prize closet!  My biggest achievement came in September, which is also Muscular Dystrophy Awareness Month, when I held a Family Day and Fun-Walk at my local fairgrounds to benefit MDA. We called the event “Steps for Sundae.” The community came together once again to help me raise over $17,000 for MDA!

Sundae enjoying time out in the community.

My mom and dad both work full time, so I usually do the grocery shopping or run errands for my mom. During the summer, my dad is busy on the farm, but we take a lot of day trips, visit our local parks, attend baseball games and concerts. I have a wheelchair accessible van that I am thankful for because if I didn’t have that, I wouldn’t be able to go anywhere, as we live several miles from town.

From September until about May, my mom and I stay busy by attending a lot of high school and club volleyball games to support my cousins. Most of the JV & Varsity teams volunteered at my MDA walk! While attending these games, I have had the opportunity to meet many people inside and outside of our community. Besides going out to volleyball games, I like to go shopping, try new restaurants, go on coffee runs, and travel.

My aide and I wrote out a bucket list of activities that I’d like to do over the next year or so. This will give me things to look forward to throughout the year and as I complete each one, crossing it off my list will give me a sense of accomplishment. I’ve set a goal for myself to get out of bed and out of the house at least 4-5 days a week.

I would encourage you to get out at least two or three times a week to avoid isolation. Write a bucket list – it doesn’t matter if it takes you one year or five years to cross it all off, it will give you something to look forward to and plan for. Join a club, take a class, make plans with a friend or family member to go window shopping or for a walk. I know it can be easy to lay in bed and become complacent with it, but it really does a person good, physically and mentally, to get out and be active!