Jan 292013

Two and one half years later and no longer able to paint, I'm trying to learn how to use the iPad and iPhone from the inside out.

I hope those who visit my blog from time to time will pardon my recent lack of activity. Some of the earliest readers may recall my chapter that dealt with rewriting life’s script when things don’t go the way you expected or hoped. Well I am once again needing to tear up the pages, or maybe hit the delete key, and put in some fresh paper (or RAM space).

The recent death of my wife left a big hole in every day and in every concept of my future. Couple that with the recent severe decline of strength in my upper body which deprived me of the joy of painting and I have been in a bit of a bad space lately. I realized that I needed a new challenge, one that relied more on mental gymnastics than the other kind. So I gave myself the improbable task of learning to write applications for the iPhone and iPad. Of course as soon as I got into trying to learn about that, I discovered how little I really knew about programming. So for the past few weeks I have been trying to learn C, C++, and Objective-C, along with the Apple integrated development environment called Xcode.

Fear not, I have not wandered off into some digital wilderness, as I fully intend to use my new skills, once acquired, to develop an app or two related to disability and to assisted living. I also might try to develop something related to the two diseases that I know so well – myotonic muscular dystrophy, which claimed my wife, and inclusion body myositis, which is trying to claim me.

I even might have some fun with an art application. But, first things first, I still have a lot of learning to do. So these days and nights I sit in my room at the assisted-living facility and watch instructional videos and try to do the exercises. It’s sort of like being back in college except I’m not eager to graduate.

Although I can no longer physically produce tools and garments that assist with the life of a disabled person, I can still think about things that might be useful. I am also going to be doing more articles soon about life in an assisted living facility, as it is really quite an adventure.

I am enjoying getting to know more about my late wife's early years.

The new blog site I am creating in memory of my wife, Beth Shirk, is underway. You are welcome to follow its progress.


  4 Responses to “As I Was Saying …”

  1. Hello Mike,
    I am happy for you that you are finding new interests. I read your developing blog on Beth. It is lovely.
    Thinking of you,

  2. Mike, you are amazing. My husband David was diagnosed eith IBM in 2007. We live in Traverse City, MI. We have a condo and fortunately have been able to make improvements which makes it easier for David to get around and meet his daily needs. He spends most of his time in his lift chair in the living room. He has a motorized wheel chair with a seat that elevates him to a standing position. He also has a battery operated toilet seat that raises him to a standing position. He has a hospital bed that has helped him get to his feet. Obviously he can still stand but not for long. We just took delivery on a new Braunability Van and are looking forward to getting David out a little more. We purchased a van that would carry his wheel chair but it was getting more and more difficult for him to get into.thus a new Entervan. He is getting weaker and weaker all over. I think the next thing will be looking into some kind of ceiling lift. I have a bad back so I’m not sure I can help him. We do have help coming in 3x a week so thar I can get out and run errands etc.
    I just wanted to say thank you for all you have done so far. Again, you are an amazing man and I’m sure you have helped so many people with this terrible disease. God Bless you and will be looking forward to more and more of what you are doing.
    PS. I assume you have an IPad. Do you use a stylist or ? to write etc? Any suggestions would really be appreciated. Thanks. Julianne

  3. Good blog regarding Beth, as well as the photos. Look forward to reading more. I’m just curious, but since Beth’s condition was inherited (you mentioned there is a 50/50 chance of inheritance from a parent), from which of her parents might she have acquired this? Or, could they have carried the gene but not actually showed symptoms of the disease itself? Or did I totally misread/misinterpret something you wrote? Thankfully your daughters did not acquire the gene.

    Like you, I have IBM, and it was recently brought to my attention that I might have an inherited form. I realize, of course, that this is entirely different than Beth’s condition. Anyway, looking back over the years, I’m nearly certain that my mother (now deceased, as is my father) had IBM, but the symptoms were generally ignored, and it ultimately went undiagnosed.

  4. Oh, wait, I just read further on another page, and you mentioned that one of Beth’s parents had to have carried the gene (probably her mother, you stated). Obviously you will never know for sure. Since my mother was an adopted child (see my first post above) and I was only able to find out a few things about her biological origins, I don’t know if anyone in her family suffered from IBM (again, I realize Beth had something else), but I’d be willing to place a big bet that there was something running through the family, based on my own mother’s physical condition (muscle weakness, etc.).

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