UPDATE: East Bay SCI Support Group gets off the ground
We weren't quite sure how many people may actually show up at the first-ever meeting of the East Bay SCI Support Group on Thurs., Nov. 9th but were determined to proceed regardless. In the end, the first meeting had four attendees to go along with NorCal SCI co-founders, Nick and Franklin, as well as SCI-FIT founder, Dan Dumas.
Sure, we would have loved to have more people there but Rome wasn't built in one day though they were laying bricks every hour and that's what this feels like. We work and talk to all the SCI Support Groups and most of them are challenged with inconsistent attendance, so we didn't expect for this to be any different.
From right to left: Franklin, Steven, Will, Myles, Richard (Nick was the photographer)
Steven, Myles, Richard and Will were the attendees and each of them brought great insight from their own world to share with others. We heard from Steven, the test pilot for the SuitX exoskeleton, from Will about his bout with Multiple Sclerosis which had an amazingly-similar effect to someone with paraplegia, Myles who went through a multi-month rehab at Santa Clara Valley Medical Center, Shepherd Hospital and Craig Hospital, and Richard, a high-level quadriplegic with a lot of great questions and feedback.
As Steven best put it, he felt very good about being among his peers who "get it and understand the challenges of SCI" and are willing to share with each other their challenges and the solutions they've used. Steven is six feet tall and has a lot of trouble gaining weight which has contributed somewhat with the challenge of staying ahead of skin breakdowns around the ischium area. But as we discussed, eating ended up being a challenge for most of us. We simply weren't eating enough for a variety of reasons despite the fact that we were keenly aware of the importance of proper nutrition. It was also great hearing from Steven about exoskeletons and where they're headed. We appreciated his contribution.
Before we knew it, two hours had gone by and it was time to end the meeting but not before we decided, for now, to keep the meetings informal as a way for people to get together in a comfortable setting where they feel confident talking and sharing about their experiences and challenges regardless of their nature. We'll skip the month of December due to the holiday craziness and decided to get together again on Thursday, Jan. 11th, 2018 at the SCI-FIT facility in Pleasanton.
Our major thanks goes to Dan Dumas who made his facility available to us and stayed until the end and participated in the discussions. If you'd like to attend the next meeting or get more information, please contact us at info@norcalsci.org.