Jan 092014

At Huntington Manor assisted living working on my first book. Since I can't move my fingers, I write using voice recognition. Thus the headset.

At Huntington Manor assisted living working on my first book. Since I can’t move my fingers, I write using voice recognition. Thus the headset.

Some of you will recall that a few months ago I decided to learn how to write applications for the iPhone and iPad. I diligently studied and practiced the computer programs necessary to master if one is going to write an App. Despite my hard work, I found the lack of finger dexterity to be an overwhelming obstacle, since code writing involves a large number of special characters that are tedious to dictate. (I can’t use a conventional computer keyboard due to the loss of movement in my fingers.) There are also a lot of corrections to be made as you work, even more so than with conventional writing, and those corrections are even more tedious. The end result was that I was spending 3 to 4 times as long learning each chapter as the other members of my online class. So I finally realized that writing Apps would not be in my future.

The lemonade that came of that sour experience was that I became more proficient using voice recognition technology. Did that mean that possibly I could get back to doing some serious writing? Perhaps, although I know better than to get too enthusiastic as that seems to be an invitation for my disease to pick up the closest bucket of cold water and throw it on me.

I am cautiously working on some writing projects. One is a book that is fairly far along. You have to remember that, for me, something that is fairly far along must be measured differently. For instance if I’m fairly far along to the store, it means that I have been riding on my wheelchair for half an hour and am about halfway there. In writing terms, it means that I have finished the first draft of a nonfiction book. The topic is – – surprise! – – What it has been like to have a rare, untreatable, progressive muscle-wasting illness and the various ways I have found to cope with it. The book is made a little more complex since my wife also developed a muscle disease and I became a caregiver as well as a care receiver.

Once the book is finished, I plan to publish it as an e-book on Amazon Kindle and SmashWords, formats that will allow it to be downloaded and read on Kindles, iPads and other tablets and computers. I may also use CreateSpace to make it available as a paperback.

I am still deciding on a title so I won’t use it here, but here is the text I plan to use to sell the book:

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.

  16 Responses to “Getting serious about writing.”

  1. Mike, what a great thing you are doing! It is so nice to see that you are overcoming your disability and doing something not only productive but that will be helpful to others in the same situation. Keep up the great work and I look forward to hearing of a release date so I can purchase the book. We need more awareness and especially for IBM. Way to go!

  2. Mike so please to hear about the book.I know it will be invaluable to the old and new people who find theirselves in the place we are.Not long after I was Dx with sIBM ,I found one of your videos on Y Yube.I was so impressed in the way you faced you’re challenges and found a way to overcome them.I must confess I use a lot of them today it sure makes my life much easier.Thinks again for all the tips,you’re a great inspiration to all of us.Hope the book is a great success as I know it will.

  3. It is the bitter truth that those of us who live with Inclusion Body Myositis are members of an elite group, membership in which we wish had passed us by. But it is what it is and we pick ourselves up and look for the silver linings. One such bright spot, Mike, is that we have you and others, who represent our plight so clearly to the “other world”. Wishing you good luck with the progress on your book! It is needed; I very much look forward to reading it.

  4. Mike – Great project you are planning. What are the steps involved in publishing an e-book on Amazon?

    • Dr. Cunningham, the steps are not that different from any other publishing until you get to the very end. You have to write the book, have it edited (most people recommend that you don’t try to edit it yourself), format it for publication, and then use conversion programs (most of them are free) to turn the text file into the appropriate E–pub format. You should also have a professional cover design.

      Amazon provides tools and instructions for preparing a book to be published for sale to their Kindle readers. You can find it here: https://kdp.amazon.com/help?topicId=A328FYMFAE7VNY#pages

    • I’ve really enjoyed reading your blog over the past few weeks! I’m an editor at Family Circle and we just started a social networking site for moms of tweens and teens, Momster.com. Would love you to check it out. Feel free to e-mail me if you want to learn more . Hope to see you around the site!

    • I agree with the above, having the lights off a permanent feature would be great not only for the environment but our eyes as well! It was so much easier to watch videos with this feature.

    • “Partly its because I’m a rebel and I hate anything that everyone likes or finds meaningful. I like to go against the grain and be difficult and annoying.”These character traits aren’t something that I would be proud of and I would really be hurt if other people identified them in me.

  5. Mike,
    This is so fantastic and I am so excitted for you…and us! I love your writing and insight into what we go through with this awful disease. You have become important to so many people with this disease. It’s not just your awareness but your abilty to express what you experience and what you’ve learned from those experiences in a way that is easily accessible to the general public. I have no doubt you will be very successful with this book.

  6. Great job, I have a friend that is always telling me to write a book about all the situations I find my self in as this disease progresses, she tells me I have to laugh about them or I will cry. may give it a try, thanks for the incouragement.

  7. So looking forward to your book. I am in awe of your ability to “put in word” the life we experience with IBM. I know it will not only be a great success but help all of us give a better understanding to friends and family. And for all of us just starting our journey with IBM it is comforting to read someone’s journey down the road we are traveling ourselves. Good luck to you and I can’t wait for the finished product!!!

  8. I was diagnosed with IBM this past June. There is a trial by Novartis in Houston where I live, but I can’t find the doctor who will be heading it up? Do you have any idea who that may be?

    • I couldn’t find anything on the government’Is clinical trials website. You might check with your local Muscular Dystrophy Association or if you have a Myositis Association Keep In Touch group you could ask them.

  9. Dropped by your blog yesterday after Jim told me about your book. No one would be able to write as clear, insightful, and often amusing account of your ‘adventures’ with IBM as you. It’s sure to be a success.

    Also checked our Philip’s new recipes. Will try the French toast this weekend.

    I am incensed by your experiences with Medicare and suspect Obamacare will result in the same blind attention to what patients really need.

    We’ll see you in the Spring when SDWS again invades Huntington Manor’s gardens.

  10. Mike, thank you for writing your book. I’ve purchased it for my Kindle and will buy the paperback so family and friends can have a better understanding of IBM.
    Life Disabled has been my handbook as I go down the road, and now I will have your book to help even more.

    • Thank you so much! I will be looking at the proof of the paperback version next week and I hope to have it available for sale the following weekend.

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