Glenn Olesen, 49, and Jake Marrazzo, 18, who both live with Duchenne muscular dystrophy (DMD), shared some of their personal perspectives and experiences in the opening keynote session of the CureDuchenne 2021 Futures National Conference.
In an upbeat session, the pair chatted with moderators Sean Baumstrak and Kyle Bryant, who both have Friedreich’s ataxia, about what it is like to live with a rare disease. Baumstrak and Bryant, of the motivational “Two Disabled Dudes” podcast, addressed the panelists with questions about their personal and professional lives.
Marrazzo, who is in his freshman year in college, talked about the importance of having a positive outlook on life. He discussed how he adapted to the college environment and explained that he sometimes had to make others feel comfortable about his condition to be comfortable himself.
Olesen, who has been a wheelchair user for 28 years, stressed focusing on what you can do in life and believing in yourself. An engineer, DJ, and blogger, Oleson said he wished he chose a positive outlook on life sooner. He explained how he now gets up and gets ready every day “to keep ahead of Duchenne”.
“Success is on the other side of fear,” Olesen said, emphasizing the importance of staying motivated. “Non-disabled people also struggle in life,” he noted.
Read more about DMD.
Marrazzo talked about the importance of trying new things, even if at first they seem impossible to achieve. “Don’t live the diagnosis, live the life,” he said. Marrazzo explained that it is OK and normal to be upset and angry, but said to not let that consume every day.
The moderators and panelists also addressed the importance of family support and navigating relationships with caregivers. Marrazzo said his family did feel a little anxious about him going to college but that they wanted him to have the experience.
Olesen said his parents always encouraged him to do things like any other child. He emphasized the importance of being treated the same as people without a disability.
On caregivers, Marrazzo said that has sometimes found it hard to explain to them how to take care of him without being rude.
Olesen, who has been using the services of caregivers for 25 years, said you have almost an intimate relationship with them. “They see you at your best and your worst,” he said. The caregiver and patient need to understand each other, he said, and added that a positive attitude is a must.
Marrazzo agreed and added that the right person might not necessarily be a qualified professional and, for him, has even been another student. This allows friendship and connection, he said.
The session closed with the panelists’ views about dating and how to approach the subject. They underscored the importance of being honest, putting oneself out there, and giving it a try.
Keynote panel. Presented at: CureDuchenne 2021 Futures National Conference: October 8, 2021; Virtual.