Sep 232013

As a disease like inclusion body myositis progresses, it does more than produce the physical changes you expect. It also has a way of taking over your life. It seems that every day I spend more time trying to find solutions to living with IBM than I do actually living. It is like I had just taken the most demanding job imaginable and simply have little time for a personal life.

This may be why I am able to tolerate my current living situation. Even though I am in a very comfortable room with a perfectly large bathroom and am surrounded with just about every assistive device you could think of, it still is not what a normal person would consider ideal. The other residents are nice people, at least the ones who are capable of speaking, but for the most part they are either older than I am by many years or have other issues that prevent forming a personal bond.

About two hours of every day is spent taking care of basic physical needs such as getting up, toileting, bathing, eating, etc. The rest of the time I generally spend at my computer working on the website and blog for Huntington Manor, updating my own blog and my wife’s memorial site, visiting friends on Facebook and posting to the various support groups related to my illness. Every so often I need to tilt my wheelchair back to a horizontal position to help avoid pressure sores and circulation problems and during that time, since I am basically staring at the ceiling or the sky (see video below), I generally focus on meditation. I usually spend one or two hours out of each day looking up information about living arrangements, adaptive equipment, etc., or making phone calls about the same issues. Then there are the doctor visits which usually happen one or two times a week. Even though the appointments themselves are not that long, they involve 8 to 10 miles of wheelchair riding for the round-trips, or even longer bus rides. If there is time left over, my latest Netflix treat awaits.

As I write this, I am not sad or bitter, I am simply amazed by the way I have been so completely taken over by IBM. Up until a year ago, my post-retirement time was more likely to be spent dealing with my wife’s myotonic muscular dystrophy, as it was a disease even more complex and, as we now know, more life-threatening than mine. But that seemed like a worthwhile pursuit and as long as there was hope for making her better, what else would I be doing?

Now here is where this analysis gets a little weird. When I look at the lives other people live, I do not feel envy. if I had to describe what I feel I would say it was puzzlement. Dining out, games, camping, trips to the beach, all the things I can no longer do, I don’t really miss. Somehow I feel like what I am doing is actually entertaining.

My biggest regret about the way I live is that I wish it could be more meaningful. I am sure everyone starts having such feelings as we begin to realize that one of these days will be our last. But I have a unique opportunity since I have almost no obligations other than arranging for the assistance I need to keep me healthy. I keep returning to writing in the hopes that someday I will write something that really has meaning. I am sure that makes me one of about half a billion writers who feel the same yearning.

Unfortunately, making the decsion to “write something meaningful” isn’t enough. I am reminded of the scene in Funny Farm where Chevy Chase is sitting at his typewriter, having left his job in the city to pursue a career as a novelist. He types the title, puts in another sheet of paper, types “Chapter One,” shoves the carriage return (something young writers may not know about) and sits staring at the empty page. For days.

One of the nice things about voice recognition is that an empty screen and listening microphone can’t apply the same pressure. Eventually it will hear some background noise and start typing random words, frequently expletives. For that matter I can just start talking gibberish and Dragon Dictate will not even raise an eyebrow as it spits the words onto the screen.

See what I mean?

A two minute sample of garden meditation.

  11 Responses to “Random Noise about a Rare Disease”

  1. As far as I am concerned, the work you do on this blog is very meaningful. I check every day to see if you have something new to say…
    Maureen, wife of Jack, who has IBM.

  2. Hi, I just found your blog today. Very nice work here, I enjoy reading these posts. I’m 26, my Dad has had IBM for a few years now.

    I’m responding to your thought at the end in regards of voice recognition. Dragon Dictate is very cool! I’m hoping to aqcuire a pair of Google Glass for my Dad as soon as they’re more readily available. That type of technology could be incredible for people with IBM and all muscle diseases, in my mind.

    Going to point my Dad to your blog today. I know he enjoys all of the forums he can find online.

    • Thank you for your comment. I am also curious about Google glass. It might be very helpful for me. In addition to Dragon dictate I also have found the GoPro camera to be very helpful. I wear it on my head and control it with my iPhone.


  3. Mike, I’m new to all this and found your site from TMA website. I’m still awaiting diagnosis, but have been pondering my life’s mission too. Just like you, I wonder what I’m supposed to do since I can’t do the physical things I used to do to help people. But what gets me through is my faith that God has a plan for me and I am eager to find out what it is I’m supposed to do with the rest of my life. I’m 58 now, feel like I’m 78, and have all kinds of mental energy but not physical!!
    Waiting for an answer is not my best trait, but that is my job right now and I intend to do a good job. I read a chapter in my Bible every night and try to apply it to my situation and gives me hope for my future. I will pray for all of us every night and see what God has in store for us. Brenda
    PS Mike, what you do right now with your discussions here and on TMA is so valuable to the rest of us!! You have no idea how you touch everyone by simply “being” here!!

    • Brenda, thank you so much for your comment. I have been somewhat inactive for the past couple of months and you have inspired me to make a renewed effort to get back to writing.

  4. Good! We all need a kick start once in a while! I’m going to peruse your blog a little more to figure out where you live like, how far away are you from anyone else on the TMA message board. Do you ever go to any support group meetings? The neuro I’m going to now is host for an IBM group so I’m excited to meet more “Myosites”!! B

  5. Been in my office chair too long so must make this brief. Will write more later. Just discovered your blog a few days ago. It has already been incredibly helpful. I live in a rural area with very little resources for folks like me with FSH MD–with skeletal muscle weakening in all extremities and torso. Little awareness of limitations placed on us by weak arms and legs. Will soon be in a wheelchair, wrestling with how to get to dr offices now. Your chronology of disease progression is eerie. Essentially same as mine, but faster. I’ve gotten a ton of helpful info from your site so far that local resources haven’t known about. Thank god you’ve been as proactive and organized in your coping with your disease and have shared your experience and knowledge on the web. Your information about practical adaptations is invaluable; you’re like a point man for me. Will be using your site to link up with other folks who can also provide useful info. THANK YOU SO MUCH FOR BEING HERE TO HELP US COPE AS BEST WE CAN. Hang in there and keep focusing on the pleasures we still can enjoy. Audiobooks are great. My wife rips books from local library on CD, moves them into a little MP3 player for me. With more time to fill when I can’t sit at my computer, I’m getting to listen to books I wouldn’t have had time for in the past. Take care, Mike. Will check in again soon.

    • Thank you for taking the time to leave such a thoughtful and kind comment. Words such as yours are what keep me going, although I am sorry that you have been afflicted with the illness which prompted you to visit the site. I had not been very familiar with FSHD before so I just looked it up on the MDA website. I can see the similarities that you mention. I have not been posting much lately although I am working on a major summary that I hope to have up before long. I am also working on a discussion of the affordable care act as I believe it is a topic that will be of much interest to all of the disabled community in the US.

  6. Mike,

    You’ll leave a valuable legacy if this site can live on to help others. Hope there is a way to keep the blog alive and accessible to those lucky enough to have found it.

    Do you have any advice for that difficult transition from walking to wheelchair, particularly transportation? I can still use a rollator for short distances, but have real difficulty getting to a standing position from a seat. I use cushions to elevate me, a chair back and my wife’s arm to brace on as I push up, then gather legs under me one at a time. Getting in and out of our car is almost impossible, but am trying to avoid going the wheelchair route until absolutely necessary because I’ll need an expensive “stand up” model, a new vehicle to accommodate it, etc. My immediate challenge is getting in and out of our car. I can’t say for certain, but I’m pretty sure the bus and vans for disabled in my area do not have what I need. I’m currently looking into car seats that swivel and extend in and out. The Bruno Valet LV seems to be what would work, but the dealer says they don’t have a base to fit our old Volvo. I’m wondering if getting a fabricator to custom fit one would be doable and reliable. Since I only go out twice a year for dental cleaning, I’d hate to invest tens of thousands of bucks on a system that may not be worth the expenditure.

    Any recommendations of websites and chat rooms for folks with similar conditions – weakening in arms, legs and torso – that are focused on adaptive solutions, not talking about their disease endlessly? I need answers and practical solutions. MDA has been hopeless.

    Thanks for your any advice you care to offer! Just listened to a great book recently – “Cutting For Stone”.

    Take care,


    • Jud, since I don’t know where you live, I can’t be certain, but I do know that most areas have accessible transportation available in one form or another. Here in California, we have ADA Ride which coordinates transportation services for the disabled. They work with the local transit districts — I use the San Diego Transit MTS Access when I need to travel longer distances than my wheelchair can comfortably take me. If you have insurance, a wheelchair with tilt and recline will probably be covered, although it is almost impossible to get an elevating seat covered despite the fact that it is so necessary for those of us with lower extremity weakness. As you pointed out, with the wheelchair comes the need for a different vehicle. I have a brawn ramp Van that I have used for many years. They are very expensive new but if you can find a used one you can sometimes get a really good deal. However if you really are only going to use it a couple of times a year I would look into a temporary form of accessible transit. You can even hire someone with a RampVan to come get you and it would be far less expensive than paying to have the vehicle year round.


  7. Mike,

    To answer your question, I live in Humboldt Co. , CA. Low temps in 20s this past week that is setting records daily. My wife put up a 2nd hummer feeder this afternoon to be sure our neighborhood hummingbirds don’t waste critical energy fighting over a single feeder when they first look for food in the morning. Had a pair of northern flickers enter and check out a nest box on a pole. It’s taken at least four years to get to this point where flickers are actually using the box originally built to meet their size needs – internal dimensions, hole size and location.
    Poor past locations and setup didn’t generate any interest. Different location, larger hole, and only a few wood chips inside seems to have done the trick. So cool to see each climb the pole, check out the hole size by poking their heads, then upper body into the hole, then entering and peering outward. Probably looking for a good place to roost during these cold nights, but hopefully house-hunting too.
    My outside time is limited to spending about an hour a day, in good weather, on our deck–best investment we’ve made. Birdwatching is an interest and a wonderful distraction from myself. We have five boxes in our yard–one for flickers, one for woodpeckers, two for the the tiny and cute chickadees, and one for swallows. If you like, I’ll give you periodic reports of interesting sightings. Modifying the nest boxes are a real exercise in patience and careful observation. You have to wait the year between mating seasons to see if modifications will get the desired results. A good activity for folks like us who practice adjustment and adaptation on an ongoing basis.
    I’ll conclude with the purpose of writing, to wish you a merry Christmas. Tonight I’ll lift my Tom and Jerry drink to you and your positive outlook and courage to meet each day with a lust for life and its many small but beautiful gifts. Cheers!

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