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:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Dec 192013
 

What if you liked to drive fast? And what if you couldn’t drive at all? What if the most exciting part of any trip was when you tried to negotiate your power chair onto the EZ-LOK system on the floor of your van?

Well, that’s basically my situation. But I do have a few advantages. I have a power wheelchair. It doesn’t go really fast, but I usually can catch up to most of the pedestrians on the sidewalk. More importantly, I have a GoPro camera that I can strap to my head or mount on the chair. And I have A brand-new iMac with Logic Pro X for manipulating sound and creating music plus Final Cut Pro X for editing video. Put it altogether, and what might be the result?

You are about to find out, provided you click on the video link below. It only lasts a minute and half, but it might give you a whole new idea of what life in an assisted living community could be like.

I call it Huntington Raceway Lap. You will see why.

Enjoy.

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.

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.

Jun 282013
 

Dear bidet, you have no idea how much I have missed you for the past 24 hours.

After struggling with inclusion body myositis for more than 17 years, it was a bout of constipation that finally sent me to the hospital. After 17 days, I owed too large a debt to my toilet to ignore the problem any longer.

I checked into Scripps Green Hospital late in the afternoon. I was in my Permobil C500 power chair, but I was forced to abandon that for a gurney. The hospital staff seemed shocked when I told them that I could not stand up and transfer, they would have to find a way to lift me. A Hoyer lift I suggested. They shook their heads. “We will get a lift team,” one orderly said.

Silly me, I expected to see a few rejects from the San Diego Chargers show up. Instead, it appeared that their lift team consisted of anyone who was not on break at the moment. I tried to explain that I had contractures on my left arm and left leg and that I would be no help whatsoever, not because I did not want to, but because I could not. Nevertheless, they each grabbed a limb and said “one, two, three!” and lifted. I have a fairly high tolerance for pain, and even when something really hurts I try not to make too much of it. I literally screamed out loud at the top of my lungs. But on a positive note, they didn’t drop me to the floor. This process was repeated when they transferred me to the x-ray table, then transferred me back, then to my final destination––a bed in room 466.

At last! Oh how wrong I was. You see in order to cure my bout of extreme irregularity they were going to administer “GoLghtly” which is mostly used to prepare for a colonoscopy. It makes you Go, but certainly not Lightly. In my case it was a way to force the issue. After drinking a couple of quarts of the stuff, I was ready for the next phase at about 3 am. A nurse’s aide came in response to my call button (eventually) and I explained what was about to happen. She extended her arm and wondered if I needed help to the toilet. Obviously the second shift had not been told about my condition. When I told her that I could not walk, stand, or even roll from side to side, she left quickly in search of help. Help consisted of two more aides and a bedpan.

Their technique was simple, but brutal. They would shove me to one side of the bed, rolling me in the process, then put a very uncomfortable plastic thing beneath and roll me back the other way so that I was perched on top of it. Now my pain was complete. In order to shut me up, they brought in several more pillows and placed them in areas that bothered me the most. Of course the entire process had to be repeated to remove the pan. And both processes were repeated five more times during the night.

By morning, I was declared “fixed” and a nurse asked if I would like to have breakfast. You would not think I could have an appetite after all that, but since I had not eaten for nearly 24 hours, I let them bring it to me. I don’t need to tell you what hospital food is, but fortunately it was not possible for me to eat any of it. My dysphagia means I must be sitting upright but the hospital bed wouldn’t take me to that position.

“Can’t you just sit on the edge of the bed with your legs dangling over the side?” the nurse asked. Once again I had to explain about having no upper trunk support. So they put the breakfast on the over-bed table and shoved it up close to my face. Of course I could not raise my arms high enough to even pick up a fork, let alone get something to my mouth. When the nurse returned and saw that I had not eaten anything, she offered to feed me a few bites. A few bites was all it took to send me into violent coughing spasms whereupon she promptly decided I needed a consult with a respiratory therapist and a speech therapist. For that matter, why not also have occupational therapy and physical therapy? (I was on Medicare with a good supplement after all.)

So, for the three hours before lunch, I was visited by all of them plus a case manager, charge nurse, resident doctor, dietitian and nutritionist. Then came lunch and once again they tried to feed me, and once again it was nearly impossible. By then they were ready to fill out my discharge papers and send me home. But there was one last minor detail. They had to get me out of the bed and onto my wheelchair. This time they did get a Hoyer lift, but none of them had used one before, so it was a part scary/comical procedure that lasted for the better part of half an hour and ended with me kind of in my wheelchair.

Now I am back at Huntington Manor, sitting in my very comfortable Permobil, secure in the knowledge that soon my two caregivers will use the overhead ceiling lift to painlessly lift me from the chair and place me in my bed.

I had asked one of the nurses why the hospital was not better equipped to handle people like me. Her answer was that they had all kinds of patients, not just people like me. Of course that is true, however local grocery stores also have all kinds of people shopping there, but that does not prevent them from having wide unobstructed isles, handicap parking out front, and automatic doors. Time and again I read of people complaining about the inaccessibility of healthcare facilities, yet nothing is ever done about it. if I were a little bit younger I might take this up as a cause. It is not that I am too old for the work, it is just that I know I would never see any progress during my lifetime.

Apr 142013
 

Preparing Work Apron for washing

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.

I have had several requests for the patterns for some of my projects. Unfortunately, by the time I was doing the videos, I had lost too much of my finger dexterity to be able to draw well enough to create a pattern. Instead, I would use voice recognition to dictate instructions to myself. Following are the instructions for making an insulated apron for use in the kitchen.

These instructions can be modified for making a work table, by replacing the insulation and batting with a piece of hard board such as Masonite and leaving one end open.

We are making an apron 24 x 17 with two twelve inch straps with velcro fasteners. (NOTE THAT THERE IS NOTHING AROUND THE NECK!)

For apron:
Cut fabric with four and five eighths inches extra on ends and five eighths extra on sides.
Result is two pieces 33.25 x 18.25.
Cut insulation and cotton batting 16.5 x 20.
baste insulation & batting together with shiny side of insulation out.
Sew two fabric sides wrong side out the long way.
Turn inside out.
Insert filling (insulation, batting, with insulation facing top).
Run stiches across short ends to lock filling in place.
Use a wide roll hem (approx 2″)at each end.
Sew long edges to lock pellon in place.
Baste layers together and use walking foot to quilt the insulated surface.

For straps:

Cut two pieces of fabric 13.25 x 6.25.
Hem the short ends.
Sew the long seams inside out.
Pull them through to be right side out.
Cut two pieces of fuzzy velcro 2″ x 5″.
Straddle the seam with the velcro and sew in place.
Fold the opposite end of each strap and sew together.
Use reinforcement stiches to attach the straps to the hems of the apron.

Mar 202013
 

A handicap-accessible bathroom.

Every time I explore other assisted living facilities, my bathroom always draws me back to Huntington Manor.

The following is a comment I posted on another blog site. It is in response to an article written by Martin Bayne on Dr. Bill Thomas’s ChangingAging website. Mr. Bayne finds himself in a situation similar to mine. He has begun writing articles advocating for the plight of those of us who need assisted living and for whom there are no satisfactory options. I share his concern and am hoping that I can find a way to add my voice.

I am 72 years old, nonambulatory due to a rare disease (inclusion body myositis), and am living in an assisted living facility. It took me a lot of searching before I could even find one that would accept me. Most said that they would not take care of someone who wasn’t able to stand or walk. My “neighbors” are almost exclusively people 20 years older than me and most are incapable of carrying on a conversation. (no fault of their own, disease and age have damaged important cognitive functions.) The caregivers here are very conscientious, but like most, they are overworked. I am fortunate that I can be my own advocate and thus I get very good treatment.

Every so often, I will check the surrounding area of Southern California to see if something new has arrived that might provide a more stimulating environment. At the end of each search I always return to my room and feel grateful for what I have, because it is fully wheelchair accessible including an enormous roll in shower. Most of the facilities have tiny tub-showers with fiberglass enclosures and little built-in seats that could not possibly accommodate me. As for their “activities” the larger facilities seem to focus on the needs of the least common denominator and provide “sing-alongs” featuring songs from the 40s, bingo, and various childish games. For this, they charge anywhere from $5000 – $7000 per month. By comparison, I like to spend my time studying computer programming via the Stanford University lectures on iTunes. (Or writing this blog.) I know that I am not the only person who is older or disabled but also has a continued desire to learn.

It is obvious that we need a new paradigm for the care of an aging population. As we live longer, more and more of us will develop chronic illnesses that reduce our mobility or our cognitive facilities. In my own case, the ideal solution would be to live in my own home with visiting care givers to get me out of bed and shower and into my wheelchair in the morning and then get me back into bed at night. For most of the day I can be independent except for meals, which I could obtain at a local restaurant or my local microwave. The problem comes from not knowing exactly when I might need help. If I were in bed at night and an emergency arose, what would I do? If, during the day, I dropped something important and couldn’t pick it up, how would I get help? Right now, I can press the pendant that is always around my neck and someone will be around to help me. At home alone there is no such system. The cost of round the clock in-home care is prohibitive and would be a terrible waste of human resources anyway.

My concern is that the movement of for-profit corporations into this field means that any rational and humane solutions will be forever blocked.

Mike Shirk

Since I wrote this article, my circumstances have changed. I was able to find an assisted living facility, Sunrise at La Costa, that was willing to put up with my non ambulatory status and ceiling lift. I wrote about my new residence in this blog article. Since living there I have learned that even one of the best facilities in the area leaves a lot to be desired for providing intellectual stimulation to someone who has no cognitive deficiency. (Well, not beyond the usual deficiencies I have always had, that is.) I will continue to write about this subject because I think it is important to hundreds of thousands if not millions of people in this country and around the world.

Index for series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

Feb 092013
 

Mike and Beth at a winery in Washington state, 1998

Beth and I visited a winery near Seattle on a 1998 driving trip along the coast to celebrate our 24th anniversary. I had been diagnosed two years earlier and was still getting around using forearm crutches. Beth wouldn't be diagnosed for seven more years.

Over the past several months, I have spent quite a bit of time browsing forums that deal with loss. Loss of a loved one, loss of ability, loss of strength and mobility. It makes me sad to hear of so many people who feel that no longer being able to walk, or no longer having the companionship of a loved one, means that life is no longer worthwhile.

I went from being a low handicap golfer, avid hiker and runner, enthusiastic traveler, to being confined to a wheelchair and now being confined to an 11′ x 15′ room, especially when the weather is too bad to go out for a wheelchair ride. My wife of 38 years died in October, far too young, due to her own rare disabling disease (myotonic muscular dystrophy).

I definitely grieve the loss of my wife and loss of strength and loss of the life I once had. At least once a day that grief will be strong enough to make me stop whatever I’m doing and shed a tear. In fact, during the first couple of months after my wife died, the grief was so intense that it was quite painful physically. Rather than avoid it, I chose to accept that pain, experience it as deeply and fully as possible, and in that way let it help me heal. Years ago, a meditation instructor taught our class how to get rid of a headache. He said when you felt it coming on to focus on the pain as intensely as you could. Try to describe it, determine its focal point, trace it throughout your body. The remarkable thing was that once a person focused intensely on the pain it usually went away. It seems that pain is trying to send us a message and if we can pay attention, it won’t have to shout so loud. So that is Part One of how I deal with grief and loss; I embrace the pain and let it heal. In fact, I pick a fight with it by writing this blog and the new blog I have created celebrating Beth’s life.

Part Two is realizing that my life is about so much more than what I have lost. I have the comfort of feeling surrounded by family, even though many of them live far away. Beyond that, life is so exciting right now due to the advances of technology. My computer provides a window into a world that I could never have imagined when I was growing up. I can use Google Earth Street View and visit nearly any city or countryside in the world just by moving my mouse. One moment I can be “walking” beside the Eiffel Tower, the next I can be riding along the Pacific Coast Highway at Big Sur. Recently I have developed a keen interest in computer programming and have discovered the wonderful online courses offered by Stanford University. In fact I was just watching a lecture (on iTunes) by a Stanford computer professor and marveling at how much I felt like I was right in the room. That prompted me to add this article to my blog.

In a few minutes, the caregiver will deliver my dinner, attach my mobile arm support, place a bib around my neck, and I can enjoy my meal while watching the latest Batman movie on my computer. So yes, my life is populated by loss and grief, but they are joined by new sources of fulfillment. I hope that others in my situation are finding their own joy as we continue this surprising journey.

Oct 142012
 

Beth at Art Reception

Beth at an art reception last year.

Three nights ago I got those terrible phone calls. The first was from my wife’s new assisted-living facility. She was being rushed to the hospital. The second call was from my daughter who was on her way to meet the ambulance and said she would send her husband to get me. When I got inside the emergency room my daughter met me and said “brace yourself, it’s very bad”. Beth, my wife of 38 years was lying on the bed, a ventilation mask over her face, her chest heaving in response to the high amount of pressure they were using to force air and oxygen into her lungs. My daughter explained that without that she could not survive. Although my wife had a Do Not Resuscitate order, my daughter made the decision to allow them to take this extra step to keep her alive until I could be at her bedside and to give us time to bring our two daughters down from Orange County.

So we talked with her as her body struggled. She managed one-syllable answers and at one point opened her eyes and squeezed my hand. Then our daughters arrived and we gathered around and told Beth how much we loved her (although there really were no words that could possibly say how very much that was).

Beth on the beach with our daughters.

Each summer Beth and our daughters would stay at the beach in La Jolla for a couple of glorious weeks.


The doctor gave her pain killer and a sedative, then removed the mask. We held Beth and continued to talk with her as she struggled to breathe on her own. All too soon, she took her last breath and I felt her fingers relax their hold on mine. My wife, my soulmate, the mother of our children, was gone.

As I write this, there is no way to describe the agony. If I could, I would change places with her in an instant, but I can’t. Somehow I have to make sense of a life that doesn’t include Beth and try to use the time I have left to continue to write and help the world know more about the wonderful woman it has lost.

Spring Ahead Watermedia Painting by Beth Shirk

One of Beth's last works of art, Spring Ahead won many awards and now hangs in my room.