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:

Apr 282011
 

The Outlook Spring 2011, Page 6

The Outlook, a quarterly publication edited by Theresa Curry for The Myositis Association (TMA) devotes nearly two pages of its Spring 2011 issue to tell its readers about the Life! disabled blog. TMA is a nonprofit organization located in Alexandria, Virginia and dedicated to raising and distributing research dollars in search of cures for the various myositis diseases. In addition to being mailed to patients, caregivers, physicians, researchers and opinion leaders, the Outlook is also available online to members of The Myositis Association. One way to support the important research they do is to join TMA. The dues are very reasonable and the work they do is extremely valuable, especially to those of us who suffer from such rare, difficult and disabling illnesses. Please visit their website: http://myositis.org

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.

Sep 072010
 

Welcome to Life! (disabled). And note the emphasis. Despite having a difficult disabling illness, I still find a lot of pleasure in living. Much of that pleasure stems from finding – and sharing – new ways to cope as my illness progresses. In this blog I will share some of the things Inclusion Body Myositis has taught me. I am not a medical professional, so please regard this information as personal observations and not medical opinion.