Oct 112011

Mike in Wheelchair in Back Yard

This shows how badly I needed a custom back for my wheelchair.

I apologize for the length of time that I have been absent from my blog site. Over the past few months, my upper body strength has deteriorated dramatically. I had always assumed that my illness (Inclusion Body Myositis) would continue to progress slowly, as that is how it is described in the medical literature. However, you can’t always believe what you read. Just since this spring, I have lost the ability to raise my right arm. This has also caused me to give up driving, abandon any thought of painting, and even give up using my iPad (can’t lift it). It has also forced me to develop a lot of additional tools that I need just to get through the day.

To be honest, I have been more depressed than at any point in my disease progression, and this has caused me to lose motivation. I am finally coming to grips with my new status and am ready to renew the fight. In fact, I am finishing up work on a song that hopefully will inspire me to persevere. It is called, “I won’t stand for that.” As soon as I finish production, I will be posting it here. (I am no singer, but I did have some musical ability in my previous life.)

I have also recently designed a unique pair of “shoes” that I can put on by myself and I will demonstrate those in the next couple of weeks.

Another major milestone has been the acquisition of a custom–molded back rest for my wheelchair which has made a huge difference in my general well-being. More to come on that as well.

  7 Responses to “Where Was I?”

  1. Mike,

    You are an inspiration to many, many people – what you have accomplished throughout your life is remarkable. Seeing your wonderful art has inspired me to take lessons and just enjoy the process – it is a wonderful diversion.

    You have met life head on and made the best of an unfortunate situation through your creativeness. Keep up your inspirational works!


  2. Mike

    I am very sad to read your description of recent disease progression. You are one determined guy. Please let me know if Joyce or I can do anything to help.


  3. Mike. I am so sorry to hear of this latest decline. You have faced so much and kept on going. We still look to you for leadership, and will hold you and your wife in our hearts.

    Maureen (wife of Jack, who has IBM)

  4. Dear Mike, I’m so sorry that your disease has progressed. I remember your post ‘Shot down by the Remington Club; I only recently found out that Sunrise Assisted Living uses Hoyer Lifts, at least in my area. (its not cheap). Just wanted to let you know of that option, as well as a company called Levenger.com that makes all kinds of lap desks. Hope you’ll keep blogging, and I’ll keep you in my prayers.


  5. Mike, I am so sorry and somewhat shocked to hear of your latest hurdles. I do hope and pray for your continued courage and strength to keep going. This disease keeps molding us and our attitudes about it on a constant basis. Please do hang in there, as mentioned before, you are an inspiration to so many of us. Your blog is invaluable!

    I do not know if I have a subset of IBM because I seem to be staying at the same level of functioning for almost two years now. I do know that I am getting weaker over all and whatever I am still able to do takes so much more effort and energy (and utmost attention on my part) to every move! like the transferring.

    The other day I discovered that when in bed on my back I can no longer raise my left arm up. I may have lost that abilibilty a while ago but am only noticing it now. That was a reality check for me! How much longer before the other arm will refuse that movement?
    Strangely when I am sitting upright or standing I can still raise that arm straight up with some effort. Hanging up a coat on a hook takes a bit of effort, e.g.

    I am aware that eventually IBM will catch up with me but in the meantime I block out any thoughts of what may lay ahead. Carpe Diem! Wishing you a good day and a nice weekend. Dagmar

  6. Dear Mike–I found you by going on the site, and I’m glad I did. You have so much information! I keep telling my husband what could happen and he doesn’t want to think about it. I tell him he has to at some time. It’s a reality. I was diagnosed March 2011, I had lose at that time, testting proved what it was. I was also told I’ve had this going on for several years, but showing up now. I read everything I can get my hands on, and one good thing is mine is sporadic, not hereditary.
    I wear knee braces, and do PT to try and keep my upper body. Don’t know how long that will last as testing said it was already starting there.
    I wear knee braces as I don’t know when my knees won’t lock. Also broke down and bought a Rollator.
    When were you diagnosed, and living with this before you took your downturn?
    I keep going–with a treadmill and stationary bike, but very carefully so as not to weat mysefl out.

    Will check in on your page periodically and see how things are going. We do learn to compensate, so I guess that won’t be totally taken away from us.
    I admire you so much! You seen to be a beacon of light for us.

    • Jan, thanks for visiting. I was diagnosed in 1996 but had symptoms as early as 1985. The disease moves slowly, giving us time to adapt.

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