Nov 182013
Read more about my drinking problem below.

Read more about my drinking problem below.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.

Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.

Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

  11 Responses to “Chronicles of Disability: 2013”

  1. Good on you, Mike. You are an inspiration to me. Never give up! Just as well as I have just come back from the barber’s for a haircut. When I sat down in the waiting chair I found I could not stand up. Three men all older than me (75 or so) tried to lift me up. I had to tell them what was wrong and what to do to get me up. They gave me the biggest wedgy I have ever had (lift by the back of the shorts) but it got me up. I came home feeling quite depressed but your update was waiting for me. Now I have had a good laugh at my predicament. I hope it finishes up on You Tube! I reckon I am only about a quarter of the way on my journey but, like you I am forever looking at ways to help me do things.
    All the best, Lox

    • One of the few good things I can say about this illness is that it proceeds slowly enough that you have time to prepare for the next stage. Thanks for sharing the story about the barber, picturing it in my mind gave me a smile.

    • Great job! It does get worse before it gets bteter and, you are definitely right that it is always a work in progress. As long as new art/craft supplies keep coming out and new inspirations, we need to adjust our studios to accomodate them. I offer lots of other ideas on my studio solutions blog. If you get a chance check them out. Have a great weekend, Connie

  2. Mike, as always, I am again inspired by your resilience and persistence. I am not that far behind you with my progression, but am still able to function somewhat independently. But the writing is on the wall rather clearly of what is to come and with that it is very easy to lose perspective and not see all the blessings that I have in my life.

    I do not know where I would be without my dear husband who had to take on laundry, cooking, shopping etc. and aims to make my life bearable every day. He is my knight in shining armor. You and your website have been such a valuable resource for me and many others. Getting to know you via cyberspace helps me keep my sanity and the will to persist despite IBM. Thank you and keep up the good work!

  3. Once again Mike, you are a true inspiration to me and I’m sure to the whole lot of us! You are such a creative thinker, like a McGiver! I tend to be like that too so in one way, I’m ready for the challenges coming.
    For now, I have to focus on a proper diagnosis which gives me plenty of exercise in restraint to not slug each new neurologist who walks away with no answers. Best of everything to you, Mike.

  4. i have followed your site and find you inspiring in many of your life challenges of the last
    number of years. Thanks for sharing about your wife.She was a special lady and I love her art. Your paintings really embrace watercolor.
    We have lost our mom who also had IBM for the past 27 years. Wish i could have known about you before,because you describe the progression and have given a lot of insight in to this disease. My heart goes out to you , I know the struggles you face and am glad you are able to use technology for your voice.

  5. Very interesting and important blog. It is so important to make sure that therapies and treatments include the patient’s input first and more than anything else. The most striking and informative examples were in the post on the hospital visit. I believe that every chart should have information on the patient’s disability and how it can affect his or her activities of daily living. There are always comments in a chart that determine the patient’s diet but not the patient’s ability to feed himself. As healthcare is changing (for the better), so too, should the way a patient’s status is disseminated and improve the quality of care and quality of life while hospitalized. I love to see patients, like yourself, be creative and assertive. Great blog!

    • Thank you for your comment. I am presently working on a subject that I consider important – dysphagia. I believe I will be able to post it in the next few days.

  6. […] in his disease, the when/where/what had happened to him to bring him to where he is today. Click here to read […]

  7. I bought and read your book with great interest. My IBM has a way to go as I am still mobile (like “Lurch” in the Adam’s family! but never the less able to get about with a stick or rollator. Am still driving but controls are an issue – in the UK the some of the later models of Jaguar and Land Rover have controls better suited for those with finger weaknesses. I admire your tenacity in adapting to this cruel disease. Good luck for the future.

    • Thank you Patrick. I’ve noticed that the UK seems to be more friendly to the disabled in many ways. I probably should’ve immigrated long-ago but I would never be able to leave my California sunshine behind.

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