About Me


Hello! I’m a (new) adventurer aiming to max my life as much as possible. There are many things I would like to do and this blog charts my adventures. I also have GNE Myopathy which is a degenerative genetic condition that effects my arms, hands, legs and feet. I’ve been living with it for 20 years and it has been progressively getting worse. There is no definite prognosis as it’s different for each patient but it’s likely I’ll eventually lose the ability to walk. Losing much of my liberty during the pandemic has forced me to focus on what I can do, rather than what I can’t. Life is for living and I’ve finished sitting on the sidelines watching it pass me by!

Photo by Brett Jordan on Unsplash