The blog took a break last week as I was attending and speaking at Parent Project Muscular Dystrophy’s (PPMD) annual connect conference in Dallas, which is located in the people’s republic of Texas. Just kidding. Sort of. More about Texas later.
PPMD turned 29 this year, and by my calculations, I have attended 25 of these meetings which have grown from less than 100 scientists, doctors, researchers and families to the 2023 conference where the Connect Conference topped 1,000 registrants for the first time. The 4-day meeting focuses on science, and coming together as well as industry companies working on drugs and gene therapy to improve the lives and life-span of individuals living with the most severe forms of MD. An enlightening part of the conference for me is speaking with these scientists who can put the language into terms that even us lowly humans of average intelligence can clearly understand. A really wish I paid more attention in high school biology…
The conference focuses on understanding the condition, considerations for optimum care of heart, lungs, and skeletal muscle, as well as continuing research as science tries to keep pace with the weakening of the muscles in a race against the clock. In the last 10 years or so, PPMD has grown the conference in another way: HOW WE ALL USE AND ENJOY THE TIME THAT WE HAVE BEEN GIVEN ON EARTH.
This is where I fit in. There were more than 700 people in Dallas in person, with over 300 more participating virtually (4 years ago Zoom just meant to go fast right?). Damned if I didn’t try to talk with all 700. I’m sure I didn’t, but it felt like running for office. I love hearing everyone’s stories, and where they are on their life journey. Often, muscular dystrophy didn’t even come up, likely because everyone at the conference is learning to manage it, as I do: one day at a time. If you live with a chronic illness, you also have “the look”. I call it this because there is a little bit of a glassy eyed gaze that all families have, as if to say “What the hell is this, why did it happen, and what do you mean there is no cure?” When I see that look, there is a simultaneous unspoken connection that makes me spring into action: I want to tell the other party that they are not alone, that they are seen, heard, and felt. I want to let them know that PPMD is a family that none of us wanted to join, but here we are, so let’s laugh while we cry. Let’s enjoy the together time right now, here, and share how we feel about all of it. I found myself holding hands with families and people who I don’t know all that well, telling them that I love them and that everything is going to be ok.
The conference ends with a dinner, and a big party with a DJ, games, and this year, red cowboy hats (because….Texas). I watched many individuals dance in their wheelchairs and laugh hysterically at doing the electric slide. I shared time, conversation, smiles, and a range of emotions with old friends and new families who have just received this awful diagnosis. Through all of it, I tried to remind everyone that how we live after accepting this news is all up to us. No disease can take that away as long unless we let it. PPMD and the conference also taught me that I say all of these things for myself too. I appear as a rock, however I wouldn’t wish any of this shit on my worst enemy. Put us all together….it’s worth the ride.
A special shout out here to my best friend Jim. We met a million years ago in college and bonded over drums and music. Last week we bonded over unbelievable steak, and the fact that he has become a personal care attendant without formal training. Maybe we will make a reel about how he lifts me in and out of the shower AND gets me dressed, as well as putting up with my mouth, all the times that my lovely wife is in need of a break. Hey Jim, you’re in the PPMD family too. I love you. No reels. The community cannot handle my succulent rib cage.
All the individuals living with MD who were in person or virtual: I love you. I learn more from you than you will ever realize. GO PAAC. We are changing the world. Where are those glow sticks?
The PPMD staff: All of you “get it.” I love you. But not too much, or someone will report me to HR.
Dallas: the people? Wonderful. The aquarium? Lovely. The food? Delicious. Next year PPMD turns 30 and goes to Orlando. Did I mention that people can attend even if they don’t have MD? Come and join the party. Although we deal with a big, serious subject, it IS a party.
I hope all of you enjoyed a wonderful July 4 with family and friends. Tell them you love them. It matters. One day at a time, we all change the world. Is the bar still open?
Stay awesome, stay safe, and stay tuned.
Patrick moeschen 