Thessa Hilgenkamp had her research project all lined up and ready to launch. In March of last year — we’re sure you’ve heard this refrain before — the UNLV physical therapy professor was at the doorstep of starting a new study to measure the blood flow of people with Down syndrome during exercise.
When it was no longer feasible to bring in people to a live setting and monitor their exercise, necessity once again became the mother of Zoom inventiveness.
By October, Hilgenkamp received approval from the university’s Institutional Review Board to start a new research program: Live online exercise classes for those with Down syndrome and their families. The response was a flood of relief from families who were cut off from productive exercise for their children in the face of the pandemic and from others going through similar situations.,
"Some of [the families] were desperate and super grateful that something was starting because they've been trying Zoom sessions and there's a lot of stuff out there, but none of that is really suitable for adults with Down syndrome," Hilgenkamp said. "It doesn't align with the level of complexity and the types of exercises that they need in terms of their strength and their balance. This program turned out to provide a social need as well. Connecting with the 20 participants and their families turned out to be one of the most rewarding parts for the families that participate."
It's a pressing problem for these families to find the right kind of home routine because COVID-19 is 10 times deadlier to those with Down syndrome than to those without, according to the journal Science.
Hilgenkamp partnered with Sarah Mann, a Colorado-based physical therapist who specializes in Down syndrome patients, to use her methods as the basis for the regimen and lead the classes.
The exercises focus on balance, hip strengthening, and multi-joint movements that address the flexible ligaments prevalent in those with Down syndrome.
Hilgenkamp started with a call for participants in the Down Syndrome Organization of Southern Nevada's newsletter, but in that tight-knit community word spread across the country — even across the Atlantic. One Scottish family tunes in at 1 a.m. local time to participate in Zoom workout sessions that start at 5 p.m. Pacific.
Participation isn't exactly a sit-back-and-observe proposition for parents in the thick of the program — they were actively involved in the online sessions before the start of the program
"The students are guiding the parents, but the parents are our hands on the floor. They're the ones with the stopwatch and they're the ones supporting the participant in the right position and taping out a tape measure to see how far someone can reach out for them. It's great to see how they can use their connection and their dynamics with their son or daughter to motivate or to help understand what is supposed to happen."
UNLV physical therapy students are helping to monitor participants and record changes in how they're adapting and improving to the exercises, gaining experience with telehealth. Eventually, students will be able to use that data in their own research papers.
The early results have been encouraging. Some parents are saying that their kids have better posture, or balance, or are building more stamina.
Beyond the physical benefits, group discussions after the exercise routines offer a social outlet in a time where families are cut off from each other. But for the participants with Down syndrome, the overall enthusiasm for the program has been a reward unto itself.
"There's one participant whose dad helped a lot the first couple of sessions getting in the right positions and moving him in the right direction. Now three weeks in, he is doing everything by himself," Hilgenkamp said. "He's getting up from the floor by himself. He's so excited about the sessions that he's setting up with the balls and mats the day before the session starts.
“He's completely engaged, which is something the parents hadn’t even seen in him in a while. They have seen him more active and really enjoying participation, having a smile on his face and hanging out after the sessions with the other participants."