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.

Nov 082010
 

Ability Center Logo

My personal lifeline for wheelchairs, vans, and repairs.

Last night I had to write a very difficult e-mail message to the manager of the San Diego office of Ability Center in San Diego. My wife’s wheelchair had suddenly stopped working at the worst possible time as we were beginning a six week session of daily radiation treatments for her breast cancer. I explained to the manager that my daughter would be dropping off the wheelchair in front of their facility at eight in the morning and asked if there was any way they could fit in a quick repair. I was very lucky that they had a technician available and were able to do a temporary fix that put the wheelchair back in business the same day.

I have been dealing with this company since 1998, shortly after I was first diagnosed with inclusion body myositis. They sold me my first scooter, and my first van with a lift in the back for picking up the scooter and taking it with me. Since then, I have purchased two wheelchairs for me and a scooter for my wife and two more vans with ramps. Not to mention numerous other mobility aids such as walkers, crutches, sliding boards, and cupholders.

Here is the point I am trying to make: if you have an illness that is compromising your mobility, you really need to develop a relationship with a local company that sells the kinds of equipment that you will be needing. Yes, you can probably buy the same piece of equipment for less through a discount Internet retailer, but where will they be when you have a crisis? And believe me, you will have a crisis. What’s more, a professional mobility specialist will be able to help you get reimbursement through your insurance company or (in the case of my wife and me) an organization such as Muscular Dystrophy Association. They will (or should) also have experts who can make sure your wheelchair or scooter meets your lifestyle needs.

I have not been paid for this endorsement nor was it requested. I simply believe that good people and good companies should be recognized.

Oct 202010
 

Mike and Beth outside Michael Talbart Advertising in San Diego.

My wife and I were photographed by my business partner, Tal Smith, before we closed Michael Talbart Advertising. Those who know me might recognize the changes Inclusion Body Myositis had made in my appearance.

The last two years of the 20th century also marked the end of my ability to function physically well enough to earn a living. Since my diagnosis in 1996, I had been getting along pretty well by using braces and forearm crutches. However in 1999, it became obvious that I needed to “graduate” to a scooter or wheelchair. I have always been of the philosophy that I should take advantage of any technology available, so I wound up with one of each – a Pride Legend Scooter and a Jazzy Wheelchair, both with elevating seats. I also purchased a van with a lift in the rear that would swing out and pick up my scooter and deposit it in the back. Then I would walk around to the front, hanging onto the van, and get into the driver seat. But as time went by, this process became more and more precarious, and I took some pretty bad falls in parking lots.

I also noticed that my advertising clients were evidencing discomfort when I would show up for meetings, as I was very limited in my mobility and they had to make considerable accommodations. The last straw was when a client had to lift me from my seat at lunch and then pick me up again when I fell in the restaurant parking lot (no martinis involved). I think that up until this point I had felt that my inclusion body myositis was just going to be a distraction and not a truly life-changing illness. But now I could see that it was going to continue to take away my ability to get around and to carry out the normal activities of daily living. I was also finding it more difficult to write, since my fingers were rapidly weakening. So, I reluctantly informed my business partner that we were going to need to close the business and that I was going to retire on disability.

My wife and I decided that we should travel as much as possible while I was still able. That turned out to be a very good decision since today I am unable to travel outside of San Diego County because I can’t be far from my custom bathroom and hospital bed. (Of course, if you’re going to be “stuck” somewhere, San Diego is a pretty nice place to be.)

Our travels introduced us to the difficulties facing those who rely on scooters or wheelchairs for mobility when they travel. We would reserve hotel rooms and request that they be handicap accessible only to learn that the room had been given to able-bodied people instead. If we complained, they would try to ship us off to another hotel in a much less convenient location simply to comply with the ADA regulations. More often than not, we would just rearrange the furniture in the non-accessible room and install a portable elevated toilet seat in the bathroom. Perhaps the worst offender was the Mandalay Bay in Las Vegas. First they refused to help us get our luggage from the front entrance to the lobby, causing me to break my foot when I tried to do it myself. Then they put us in a room for hearing impaired and said that that was the only kind of “handicap” room available in their hotel. We haven’t been back to Las Vegas since.

I’m happy to report that San Diego is blessed with scores of accessible hotels, restaurants, attractions and transportation. I’ll be reporting on many of these in the future.

Oct 042010
 

When your legs are weak or paralyzed and you try to stand or walk, gravity is your enemy. But when you are using a wheelchair or scooter, gravity can become your friend. One of the ways I have maintained my independence despite being unable to stand or walk is by using gravity. I have a wheelchair with an elevating seat. In addition, I have a hospital bed that elevates (the Invacare “full electric” model).

Warning! Rant ahead: Despite the fact that an elevating seat can make it possible for an otherwise immobilized person to independently transfer into and out of bed, on and off the toilet, and on and off a shower seat, Medicare continues to say that an elevating seat or elevating hospital bed is a “convenience” item and they will not pay for it. Fortunately, many manufacturers recognize the need for elevating seats and include them as standard equipment. You will need to find a mobility supplier who knows how to work with you to get what you need.

Transferring from Chair to Bed

With an elevating seat, gravity does most of the work of getting you into the bed.

Once you have an elevating seat, you need to make sure that each place that you want to transfer to is of a height that is about half way between the lowest and highest positions of your scooter or wheelchair seat. For example, if you have a wheelchair that is 20 inches high at its lowest seat position and 26 inches high at its highest position, you would be wanting a bed, toilet seat, and shower seat that are about 23 inches high. This would allow you to slide from your elevated chair to the bed and then slide from the bed onto the lowered chair when you are ready. (See the diagrams I provided with this article.)
Transferring from Bed to Chair

Lowering the chair seat lets you slide out of bed more easily.

The other item of equipment you will need is a transfer board. I strongly recommend the “UltraSlick” board. You can buy the 30 inch version over Amazon, or your own mobility supplier may have it in different sizes if that is not convenient. Important: if you are trying to slide on the board when you are not dressed, be sure to wedge a towel part way under so that you can have it between you and the board. Bare skin, especially wet bare skin, on an UltraSlick board will probably stick like glue and you may need help getting free.

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.

Sep 082010
 


By the time we’re adults, I believe many of us are living our lives according to a script – not written, but recorded in our brains. Mine went like this:

I would work as an advertising copywriter until I was 65.5 years old, then retire, when I would write the great American novel in between rounds of golf, tennis matches, hikes in the mountains and fishing trips. But then came the weakness and the falls and, with the diagnosis of inclusion body myositis, came the realization that my life wasn’t following the script very well.

For a few years I tried to fight the inevitable. I continued to work. I even tried to keep playing golf and tennis. But when the golf club began flying out of my hands at the driving range, and after I fell and almost knocked myself out on the tennis court, I realized those leisure time activities were over. My fingers became weaker and this interfered with my writing since I had always been a fast typist and had specialized in long technical brochures that were now beyond my endurance.

I retired at age 60 on disability and spent most of the next year riding around the neighborhood on my scooter, sitting at the computer surfing the Internet, and watching a lot of television.

Finally I caught on, it was time to tear up the old script and write a new one.

What kinds of things could I still do, and continue to do as my weakness progressed? What would challenge me, but still be possible? The answer will come in Act 2. (Hint, it involves a brush.)