I have had a rare, progressive, untreatable, disabling muscle disease (Inclusion Body Myositis) since 1985. During that time I have accumulated a wealth of tools, ideas and coping mechanisms to allow me to continue to enjoy life and remain independent. In this blog I will share my experiences in the hope someone else might benefit. Please keep in mind that no two people are the same, and that what works for me might be useless, or even counterproductive for you or someone you care for. I am not a medical professional (nor have I played one on TV), so please judge the content of this blog site accordingly.