On November 1st there was a free symposium on Breathing & Sleep for people with neuromuscular disorders in the Salk Institute for Biological Studies, USA. For European people a bit far to travel for just this one day. But the Salk Institute put videos of the presentations held at that symposium at their website www.poliotoday.org. You might be impressed by the quality of the presenters and their respective presentations. The information is extremely valuable for all polio survivors to see…not just those with known breathing problems.
People with neuromuscular conditions, like Post Polio Syndrome, often encounter difficulties seeking and obtaining proper respiratory care. Too often, primary care physicians, neurologists, and respiratory care professionals treat their respiratory problems as a lung issue, rather than as a muscle/nerve problem. And too often, sleep labs look only for obstructive sleep apnea and miss under-ventilation.
Maybe you will not only personally take a moment to view each segment of the presentations, but also you may want to put out a reminder for your members nationwide to tune in as their time permits as well. Or maybe you can use it at future PPS meetings and discuss the subject material together as a group. The more people who are exposed to it the better. And it wouldn’t hurt to share the link with medical professionals in each state and country as well.