the times they are a’changin’

Updating some of our resource links I started to catch-up on some of the other support blogs. What had they been up to while we were so busily going about our lives?

I started with Mike Shirk’s blog Life!disabled, click here. If you haven’t read any of Mike’s page – do yourself a favor and start. He is a great writer and inspiration to what it is to have IBM.


His latest entry: “Getting Serious about Writing”, stuck with me the most. Here’s what he has to say about a book he is writing about IBM – which will eventually be available on Amazon Kindle and SmashWords, formats that will allow it to be downloaded and read on Kindles, iPads and other tablets and computers. Paperback version may be available through CreateSpace down the road.

“Why you may need to read (This Book) right now.

Many years ago I would have loved to have found this book. I had been diagnosed with a rare form of muscular dystrophy called inclusion body myositis, and I had no idea what to expect. If could roll back time so I could have had this book then, my life would have turned out much differently. I would have done a much better job of preparing for what lay ahead, avoided being blindsided by changes I didn’t see coming, traveled more and worried about money less, hugged my wife and children more because I would have known there would come a day when I could not. Going by the philosophy of better late than never, I have written (This Book) to give myself advice should they perfect time travel in the next few years. But if they don’t, maybe you or someone you know or especially someone you care for has been diagnosed with a disease that is going to impact the ability to function in life and this could be exactly the book you need right now. I was diagnosed with my rare and untreatable form of muscular dystrophy in 1996, although I suffered from its effects for many years before. Just about the time I was learning to adapt, my wife went out and got her own rare and untreatable form of muscular dystrophy. Not the same as mine, she was far too original to do that. She had myotonic muscular dystrophy. But they were similar in the way they took away our ability to walk, to use our hands in a skillful manner (a serious issue since we were both artists) and they seemed to force us to rethink our living arrangements every other week.  This book is about the things we learned, and that I am still learning by myself now that my wife has succumbed to her illness.  I’ve shared some, but by no means all, of this information with the tens of thousands of people who have visited my Life Disabled blog.  You will find links to parts of that blog sprinkled here and there, as it contains hundreds of pictures and illustrations and even videos that would be impractical to include. I hope you find (This Book) to be interesting, sometimes entertaining, but always helpful.”

The other post that made me take notice was his recap of 2013. In it he details the pivotal moments in his disease, the when/where/what had happened to him to bring him to where he is today. Click here to read it. We’ve said it before and we’ll say it again… “it is NEVER too early to start planning for the future. Hope for the best, but plan for the worst.”

Here’s a podcast that talks about planning as “sequential approximation”: click here.

Also by the same podcaster, “You don’t know what you don’t know”, click here.


One thought on “the times they are a’changin’

  1. I did take your advice and read Mike’s blog…what an inspiring fellow!  It makes me realize just how fortunate we are to all have our health (right now) and we shouldn’t take a day for granted!


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