Alan Heiber

On Saturday, the first full day of the CureDuchenne FUTURES National Conference 2022 in Orlando, Florida, I was a virtual attendee of the session, “Pillars of The Transitional Journey.” Three medical providers gave presentations on breakthroughs in medical technology and research, as well as on how to balance these factors with the lifestyles that surround Duchenne muscular dystrophy (DMD).

While I’m no stranger to these types of presentations and the main issues covered, there were insights and anecdotes covered I haven’t shared in my columns to date.

First off there, was Pradeep P.A. Mammen, MD. He gave a discussion on how advancements in lung and cardiac care have drastically improved the length and quality of life in patients with DMD compared to decades ago. Hearing the potential cause of your death is not the most comfortable water-cooler conversation, but seeing these strides being made provides a sense of hope for if not myself, others with DMD.

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The next speaker was gastroenterologist Kent Williams, MD. He addressed the importance of bowel management. This isn’t exactly a dinner-friendly subject, but I felt he did a good job using levity to make it a more digestible discussion. It’s an issue that can seemingly rule my life. 

Transfers are tiresome and can lead to injury. I have to make a plan for this each day, as it can impact when or if I’m able to do a certain activity. If my energy is drained I might have to cancel the evening plans I had. Anxiety can also set in if I have what seems like an irregular heartbeat at the time of this process. My current diet streamlines the routine pretty well, and I recently talked to my physical therapists about assistive equipment that can lessen some of the physical burdens. Although, with that said, I could eat a few more vegetables.

Read about experimental therapies for DMD

Additionally, he gave an overview of getting a healthy amount of nutrition. A device of note was the G-tube, which can quickly provide the body sustenance and help get medications down in case of illness. This isn’t the most thrilling possibility, but I do have some reassurance in the fact that I can still enjoy solid foods in tandem with the feeding tube should I need it one day. 

The third expert presenter was Jennifer Shumsky, a practitioner and mother of an adult with DMD. Out of her points of emphasis, I was drawn to the boundaries that can exist between parental caregivers and their kids/adults. At the age of 12 years, it’s recommended that the child already have control of at least some medical decisions through a computer portal system. I feel that starting parts of this at a young age makes sense when an adult should probably have agency. She later mentioned how there is a subject matter that adults would probably want their parents to leave the premises when talking to a provider. 

There are definitely a few things I don’t want to broach with my parents very much, if not at all.

Another topic she had advice on was the process of assigning certain powers for medical decisions. I know my father is a proxy for this role should I become incapacitated in some way. It’s heavy stuff to discuss, for sure, but I feel it’s crucial.

That wraps up my first day covering the conference. It’s gratifying to affirm I’m following all of this advice to the best of my ability. It’s like a full-time job.