I recently volunteered to participate in the Precision Medicine Program (PMP) of the ALS Therapy Development Institute (ALS TDI). I chose them because all of their funds go toward research, I like doing my part to help support the ALS community, and it allows me to participate without leaving home. This particular phase of the PMP was data collection, which meant I spent the better part of last week living by the numbers!
After my ALS diagnosis in 2010, I immediately searched the internet to learn the potential of research in finding a cure for the disease. When I discovered that research had not progressed much beyond initial studies involving whiteflies, cells in dishes, and mice on treadmills, it was a huge disappointment, to say the least.
Fast forward, and we’re now reading about clinical trials with actual patients, and thanks to advances in technology, data collection has improved as well.
New ways to collect data
The Precision Medicine Program asked me to complete online medical and lifestyle history surveys plus an online ALS Functional Rating Scale-Revised (ALSFRS-R). To assess my voice, the PMP lab computer called my phone. After answering, I had to say the phrase, “I owe you a yo-yo today,” five times, then hang up. For a brief moment, I felt like an actor in a James Bond movie speaking the secret code of the day.
The final phase of PMP data collection involved six days of wearing ActiGraphs (motion detectors) on my wrists and ankles. They were bright red, about 3″ x 2″, and strapped on with wide strips of Velcro.
As luck would have it, day one of wearing the detectors coincided with my regular visit to my ALS clinic. Needless to say, the devices on my wrists and ankles drew a lot of interest. The most common question was, “Are you under house arrest?” My answer with a smirk: “No, I had a DUI.” So while the staff put me through various tests and collected data, I had the opportunity to educate them about the ALS TDI and the PMP.
A log sheet accompanied the ActiGraphs because even though the devices recorded my motions, the staff at PMP wanted me to note the times I was exercising or doing something unusual. In my case, a researcher might be looking at a graph of my readouts that contained high-low points and unusual squiggles. This might lead him to wonder if I took an unfortunate tumble down a flight of stairs. A quick check of my log sheet would reveal that I was merely bouncing on my rebounder!
Velcro sticks to fuzzy fabrics, sweaters, and just about everything! Log sheets invariably end up on the opposite side of the house from where I am exercising. Typing on a laptop is not easy with large plastic pillboxes and Velcro bands on my wrists. Fingers heavy on the keys, I hit “k” and end up with kkkkkkk!
But the weather will be warmer when I have to repeat the process — sweaters will be folded away. I’ll make several copies of the log sheet and stash them around the house. And I’ll try to write my column before the ActiGraphs show up.
Seriously, I learned that continuing to participate in the ALS community and contributing to research not only feels good but also is a good thing to do. I’ve said it before and will say it again: Don’t discount yourself as having nothing to contribute. We have stories to tell and data to share.
Together, we will keep hope alive. Together, we will move closer to a cure.
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