Strength, Responsibility and Progress

Dave LukasDave Lukas

by Dave Lukas

Being a part of clinical research trials has given me a sense of purpose and pride I didn't think I'd ever find with this disease. Until I participated, I hid my disease and didn't really identify myself as actually having it. But that all changed on a plane ride home after my first visit to Rochester, NY to participate in my first clinical trial. They have that kind of power.

I've only been diagnosed for 3 years, but I've already participated in 2 clinical trials. In fact, I was enrolled in my first clinical trial less than 6 months after my diagnosis. And it was that trial that put me on the path of pride and responsibility, and helped lay the groundwork for the second clinical trial I'm currently participating in. But this story is about my first clinical trial because without it, there wouldn't be a second. Not only was groundwork laid from a research standpoint between the first and the second, groundwork was laid within me to move from a timid approach to FSHD to an approach built from strength, responsibility and progress.

The first trial I was a part of didn't have any treatments or drugs and, not surprisingly, they were having a hard time filling it. Turns out, I was the last one in the study and the person who helped them finish years of research. The way I looked at it, despite the fact there weren't any drugs or treatments in this study, we'd never get to that point if this study didn't finish. This study was aimed at trying to find a way to measure changes in the disease over time. Relying on asking people, "Do you feel better?" doesn't give anyone the data they need to actually see if these treatments are working. So until the research community had a way to measure changes, they'd never be ready to run clinical trials where treatments were involved.

As part of that study, I took a bunch of questionnaires so they could narrow down the one that was the easiest to use and fill out. Let me tell you, there were some very confusing questionnaires that were developed in the past. So much so that when I took the last one, I knew this was going to be the one they'd ultimately use. It was pretty clear this one was going to be the winner. But again, they couldn't know that without having people with FSHD take these questionnaires back to back and then rate their ease of use, relevance, etc.

Then I did a bunch of random tasks, like put on and take off a jacket as fast as I can. Pick up this penny from the floor as fast as I can. Walk up these 3 stairs and come back down as fast as I can. Random, but easy to see why they'd be interested in tracking this in FSHD. Then I was asked to pull and push various muscle groups, all while hooked up to a computer to measure my strength. The hardest task I had to do was holding my arm straight out from my side, but I had to prevent it from dropping below a certain angle. I had to hold it there as long as I could, up to 3 minutes. It might sound easy, but I can promise you, it was not. Two years later, I can still remember the effort it took to hold my arm out from my body and keep it level. But I saw this as a challenge and vowed to go the whole 3 minutes. I succeeded, but it was not easy! In fact, when I got back to the exam room, I was sweating and my wife looked at me and the physical therapist like, "What the heck did you do that you're sweating?!".

Dave Lukas - World FSHD Day

That was the entire study. The whole process took about 6 hours and I came back 2 more times over the course of a year and repeated everything. So I get on paper, it's not the most exciting study and there would be no personal gains for me that I could point to and say, "Look, I have more range of motion in my arms ‘cause of this study." That wasn't the point, but I saw this study as a step towards a treatment and that if we didn't finish this study, we'd never have an accurate way to measure if these drugs are working when given to people with FSHD. This study would help lay the foundation for all future studies and I couldn't just wait until there were treatments available to participate. That didn't feel right to me.

But something interesting happened on the flight back home from Rochester, NY to Chicago after that first visit: I emerged out of the shadows with this disease. I identified with it more than I ever had at that point. Previously I really struggled with saying I had FSHD, I didn't want to be treated differently and didn't want the label of being "sick.". Looking out the window of the plane I began to feel a sense of responsibility to push what we know about this disease forward. A responsibility to the FSHD community to advance what we know about the disease and get us closer to a cure, a responsibility to my children to show them how to live with a disease, a responsibility to my wife to take the best care of myself so I could be here for her as long as possible, and most importantly a responsibility to myself to speak my truth that I do have FSHD and the way I'm living with my disease makes me feel proud. And yes it makes me different, but it makes me different in a way that needs to be celebrated, not hidden. Tears began to parade down my face. That's what happens when your whole world shifts and you feel a piece fall into place you didn't know was missing.

Selfishly, participating gave me a chance to travel with my wife and for us to get away just the two of us from the day in, day out stresses. I don't get enough of that time with her, so we used these visits as a way to just be together. In fact, one time we rented a car in Chicago and drove all the way to Rochester, NY for my final visit of the clinical trial. We made a road trip out of it, including a stop at Niagara Falls, since it was only 30 minutes out of our way and we had never been there. It was wonderful and an experience on which we still look back fondly, even despite the 22 hours and 1,324 miles in the car.

The other cool thing about being part of clinical trials is it gives you a chance to have time with the leading minds on FSHD. You get a chance to talk to these doctors and physical therapists to pick their brain about what research is in the pipeline, potential cures being worked on, best exercise practices, etc. Getting time with these amazing professionals and the ability to ask any and all questions is an opportunity most of us don't get.

I realize there are complications for doing these trials. I get it. Missing work, missing kids' activities, traveling, etc. All of those are valid reasons, but every person I've talked to that's participated has felt more pride advancing what we know about our disease than annoyance at the logistical issues. My challenge to you is what if you said, "yes" to participating? What if you shifted your reasons why you can't participate and what might go wrong into, "What if this all goes right?"

Life's an adventure. I choose to live my adventure speaking up about FSHD, advancing research in any way I can and being an advocate for others. But I'm also going to be an advocate for clinical trials and speak loudly for them and sing their praises because they're important, they matter and they make a difference. You can make a difference too. You can help get us closer to a cure. You can help lead the charge. You can be on the cutting edge of this disease. Yes you!

No one I've met with FSHD is a weak person. We have a strength most people don't know or understand. We've learned how to modify and adapt, it's what we do. We can use that same strength and adaptability to find a solution to whatever road blocks are in our way to being a part of clinical trials. I believe in you. And I'm confident you'll walk away changed by your experience. Plus, who knows, maybe you'll be the one to be in the study where we find a cure and you can look back with pride and say, "I did that! I was a part of history!" What are you waiting for?


Dave Lukas lives in the suburbs of Chicago with his wife, 3 children and their Siberian Husky pup. He's a runner and self-proclaimed coffee snob.

See the National Registry for DM and FSHD at the University of Rochester For more information about the U.S. registry and how to sign up.

See also our recent International Sites grant, which expands the Clinical Trial Research Network in preparation for upcoming therapeutic trials, entirely made possible by your investment in a cure.