Mar 112012
 

With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.

Since I was diagnosed with Inclusion Body Myositis (IBM) 16 years ago, I have been stubbornly maintaining my independence. I have made use of every technical aid that I could find, beginning with canes and walkers and scooters and ultimately graduating to wheelchairs and hospital beds and overhead ceiling lifts. I started with a swing away lift in the back of van to take my scooter with me wherever I went, then bought a van with a ramp and a transfer seat, and ultimately moved to a van with an ez-lok system in the driver’s position. All these were steps to allow me to independently get around. I adapted my bathroom and my kitchen so that I can could continue to cook et cetera. I adapted my studio, even my workbench in the garage. I designed and sewed special shoes, pants, and leggings. No matter what, this disease was not going to get the better of me.

Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.

The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.

But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.

I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.

  10 Responses to “Chronicles of Disability: Letting Go, Holding On”

  1. Mike, I am so very sorry to hear about your latest progression with this cruel disease. It is so incredibly tough to have to let go of what is no longer possible and be at the receiving end of things. My heart hurts for you and I will keep you and your wife in my prayers. I do hope that after the initial state of grieving yet another loss. Sending sunshine and hugs, Dagmar

    • Sorry, I lost part of my second to last sentence: …yet another loss you will find the strength and courage to see little blessings in your daily lives….

      Dagmar

      • Thank you Dagmar. There are actually some very nice benefits of having caregivers. I’ll be writing about them soon.

        Mike

  2. Dear Mike,
    I am not sure whether my first message went through. I am writing again just to make sure it’s working. My sincere apologies if you have to read about me twice feel free to discard either one.
    I am the Research Engineer for Assistive Innovations Corp and I ran into your website through one of my colleagues. I am profoundly touched by your strength and optimism towards maintaining your independence.
    On that regard, in this post you mention that you were looking for mobile arm supports. I just want to take the opportunity to invite you to take a look at our website, we have been working in Europe with a whole technological spectrum of assistive aides including a variety of mobile arm supports. I am sure you will find this information interesting. Please have a look and if you think that you want to have more information, please shoot me an email and I will be more than happy to talk to you.
    Best,

    Diego Ramirez, Research Engineer
    Assistive Innovations Corp

  3. Hi Mike, I check your site daily, and always feel like what I would write sounds trite. I was encouraged, however, with one of your recent responders citing the Dutch made automated arm. I note that there are some others in development. Do any of these seem to you to be promising? Being the old engineer that I am, I have wondered a lot about the existence of such devices and of their possibility usefulness for you, as well as of their actual effectiveness. We send our greetings to you and Beth. … Stanley and Dorothy

    • Hi Stan,

      You must curb that urge to self-edit! Always good to hear from you, and triteness is not in your repertoire. Yes, the newer arm assist designs hold promise and I will be mentioning them at my next visit to an occupational therapist.

  4. I have been following your blogs and website, etc., for a while now. I am amazed at how you have fought against IBM. Your wife’s story is really something too. What are the odds you would both get different muscle diseases of the magnitude you have indicated?! Really something.

    Anyway, I was just recently diagnosed with IBM (at least that is what my neurologist thinks it is). I had two EMG’s and a muscle biopsy (the latter being normal or at least the pathologist finding no IBM or other myositis). This was done at the University of Illinois at Chicago. Anyway, I am female, 59 years-old, and I am still wondering if I REALLY have IBM! I realize muscle biopsies are not always conclusive, but it does make me wonder. Also my creatine kinease levels are perfectly normal and have been for many years. I have no weakness in my upper body at all (hands, shoulders, arms, fingers, etc.) but the neurologist says I do (at least according to the EMG). However, my quads are another story altogether.

    I had a patellectomy of my right knee nearly 20 years ago (mistake) and all was fine (although I seemed to take much longer rehabbing than the average individual), and then things started down hill about 2000. I attributed most of my problems to severe osteoarthritis in both knees and other joints, but both my right leg and then my left (about 3 years ago for the left) began weakening severely. I cannot walk without a cane and sometimes use a walker.

    I am now entering PT to see if what I have left can be preserved. Again, this is frustrating because I honestly wonder if this is what I really have. Again, the neurologist is going with this diagnosis even in view of the normal muscle biopsy; she indicates the EMG’s I had (at two different places, the latest being done by her) indicated very definite abnormalities.

    I will continue to follow your blog, etc. Best to you!

    Christine

  5. Dear vMike,

    I would like to draw your attention to our company, Focal Meditech at Tilburg, the Netherlands. We are the leading manufacturer of Dynamic Arm Supports in Europe and have been developing and producing such devices for 20 years. Well-known Focal products in Europe are Top/Help, Sling and Balancer. We have many hundreds of them in the field that serve handicapped persons, mostly with muscular disorders, for many years. Our most recent and very advanced product is Darwing. Please see http://www.focalmeditech.nl and http://www.darwing.nl (this site is available from April 26, 2012). I must admit that we do not sell in the US, but that might change some day..

  6. Hi Mike, I’ve been reading your blog and am so inspired by your determination and your creativity in responding to the changes being forced on you. Stanley and Dotty are going to visit me next week, and we were hoping to come to visit with you for a couple of hours if it would be possible. If it is too much for you or you have doctors appointments, we would understand. We are looking at either Tuesday, Wednesday, or Thursday (May 22,23, or 24). Let me know if any of this is possible. Give my best to Beth. Marcella

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