Feb 252016
 
On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

Normally, my “Chronicles of Disability” consists of annual reports on the changes in my health over the previous 12 months. I forgot to post a report for the year 2014, but perhaps it’s just as well because there were very few changes – – just more weakness in general. So now we come to this major milestone. It has been 20 years since I was diagnosed with inclusion body myositis (IBM). This rare muscle wasting disease is described as “slowly progressing”. That may be true one month to the next or even one year to the next. But when the person I was in 1996 is compared to who I am today, the contrast is jaw-dropping.

Twenty years ago I didn’t think there was much wrong with me. Yes I was slowing down in my running, and my golf shots seemed to be getting shorter, and I did fall once in a while, so what? I was 55 years old, just normal aging? I could still hike mountain trails, jog (slowly), show up for work every morning, work around the house, go to parties with my wife, take long driving vacations. Life was very good.

Now, I very nearly meet the criteria of a quadriplegic. I can’t move either of my legs or my left arm. I can only raise my right arm a few inches above my waist. I cannot stand, walk, or transfer without the aid of an overhead lift system and a caregiver. This will probably be the last year that I am able to continue feeding myself, unless the new drug (BYM338) gets released and actually works. My fingers don’t bend and my speech is getting quite weak. This is making my writing avocation more challenging and I may need to give it up within a year or so. Unrelated to my disease, but definitely affecting my life, my wife died of her own rare muscle illness in 2012.

My current home features the ultimate "open floor plan". My wheelchair loves it.

My current home features the ultimate “open floor plan”. My wheelchair loves it.

At the time of my initial diagnosis, we were living in a two-story four-bedroom home overlooking the mountains of southern California and a little slice of the Pacific Ocean. Today I am living in 250 square feet in an assisted living facility. The room is comfortable, the view isn’t bad (mostly of an ancient olive grove), the caregivers are friendly and helpful, and the food is very good. My days are spent doing what writing I can, either for Huntington Manor or for my Life Disabled blog, but that work is getting more difficult every day. So instead I am catching up on a lot of movies and television and doing a little reading. I also like to take my wheelchair out on long jaunts through the countryside and down to the local business district of Poway. Huntington Manor is launching a major renovation of the facility and I have been promised one of the beautiful new rooms that will overlook the garden and the hills beyond. That is enough to keep me motivated to stick around until the project is finished in 2017.

When I first started this blog, and when I wrote “Rolling Back: Through a Life Disabled” I suggested that the newly diagnosed read about my experiences to be properly prepared for what lies ahead. Now with a new treatment on the horizon, it is quite likely they may never have to experience this severe of a decline.

I have reposted many of the pictures and captions from the past 20 years. I think they tell an interesting story about the effects IBM has had on one person’s life. As you’ll see, I have remained generally happy and hopeful throughout that time, but I must admit that my general mood has been declining. Recently, I saw a neurologist who lowered my expectations for the new drug by pointing out that it would not be of any use for the muscles that were already dead and that, in my case, most of the muscles are completely destroyed. The most I can hope for is maintaining the minimal capabilities I have now.

By the way, one of the special pleasures I get these days is when someone purchases my book. It’s available on Amazon — just click on the link on this page — seven dollars for paperback and three dollars for the Kindle edition, or free if you are using Kindle Unlimited.

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

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.

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.

Sep 112010
 


So, if my legs were too weak for golf or tennis, and my fingers were too weak for music or writing, what kind of future should I write for myself? I needed a challenge, and I needed an activity that could fill the days better than sitting around on a scooter or wheelchair.

While I was pondering this question, I could hear the music coming from my wife’s studio. She had a degree in art and was a lifelong artist and seemed to be having a really good time listening to music and creating beautiful works of art. Why not me?

Well, if I wanted a challenge, this was certainly going to be one. Because I had no art training whatsoever. A coworker had once looked at my attempts at sketches and declared that I had created a new form called “the opposite of art.” I couldn’t hold the brush firmly enough to make accurate marks, so any attempt at realism was out of the question.

Painting of a scene near Del Mar, CA

Beyond Recuerdo was one of my early paintings.


However, I was intrigued by the difficulty and decided to give watercolor painting a try. At first I was very disappointed with the rough quality of my work. But then I would have artists come up to me and ask how I was accomplishing this style. Sometimes I would be honest and tell them that I really didn’t have any choice. They would smile and tell me how lucky I was.

What I didn’t realize at the time, was that so many artists struggle for years to “loosen up” after having received years of training directed toward accurate rendering of subject matter. I was able to simply skip that whole stage.

Watercolor painting of a wooded path.

Morning Walk is a recent work, purchased by a fellow artist.


Lately, the weakness of my fingers has become so great that I can no longer legibly sign my name at the bottom of the painting and I am looking for a way around that problem. It is also taking my “loose” style to an extreme that I’m not sure I can tolerate. But I will keep trying anyway.

Somewhere along the way to becoming an artist, I discovered another way to challenge myself and to make my life more rewarding: volunteering. More about that in Act II, Scene II.