Feeling inspired, recharged after the Parent Project MD conference
The annual conference was a chance to catch up and make new friends
My family spent the end of June attending the Parent Project Muscular Dystrophy (PPMD) annual conference in Dallas. It was the first time I had joined the conference in person since before the pandemic, and the first time in nearly a decade that we participated as a family.
The conference brings together families, doctors, researchers, caregivers, and people living with Duchenne (DMD) or Becker muscular dystrophy. It was amazing! I was able to reconnect with friends and other parents of young men with DMD.
My three sons with DMD, Max, 17, Rowen, 14, and Charlie, 12, also caught up with friends and made new ones. My 8-year-old daughter, Mary, befriended a girl who also has a brother with Duchenne. The friendship meant so much to Mary that she cried tears of joy.
The conference also filled us with hope, because it came on the heels of an approval by the U.S. Food and Drug Administration of the first gene therapy for Duchenne. Many families, including mine, never thought we’d see something like gene therapy for DMD come to fruition in our sons’ lifetimes. It was good for my soul to be with other members of the DMD community as we celebrated how far we’ve come on this journey.
Finding new ways of doing things
What I most enjoyed about the week was talking with the other moms, which I hadn’t been able to do in years. While I stay connected with other people on social media and belong to several online chats focused on caregiving, after spending time with other Duchenne families at the conference, I realized that there are smarter ways of doing things.
This is especially true about showering and lifting my sons. For example, it hadn’t occurred to me before to ask for a prescription for a shower chair. When Rowen stopped walking after he broke his leg when he was 11, my mother-in-law gave us a small shower chair that was the right size for him. Later, we bought a bigger one with wheels.
When Max started to use it this year, he found it to be very uncomfortable, but I didn’t do anything about it because the nicer ones are expensive and out of our price range. The topic came up at the conference, and I learned that most of the other families I spoke to had their shower chairs approved by their insurance plans.
Also, I manually lift our boys during every transfer, even though we have mechanical lifts installed at home. But Rowen has recently stopped bearing weight during these transfers, which makes them challenging. I’m 6 feet tall and a former shot putter, so until now, I could handle the physical demands of caregiving. But now that I’m 43, it’s starting to become more of a strain. I realized that just because I can do something doesn’t mean I should, especially when we have lifts that we can use.
So, encouraged by the moms at the conference, I now use a lift for transfers. Rowen and I agree that it should be part of our daily routine.
The way that I’ve been going about caregiving in the past has been exhausting. It may be a little hard to admit, but as the mother of several kids, I provide an extreme level of care and, frankly, need help. I should have been using the lift and asking for help months ago.
I left the conference feeling hopeful for future treatments and grateful for the sense of community I found there. I’m also thankful for finding the courage to try new things. I learned things at the PPMD conference that are improving our lives.
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