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 182010
 

From time to time, I will review products that I have personally found to be useful. A long-time aggravation for me has been trying to open jars. When you have no grip strength, mechanical clamp style gadgets don’t provide much help. On the other hand, I have been skeptical of so-called “miracle” products that you see advertised on television.

But this one, the “One-Touch Jar Opener” was just too tempting not to try it. I ordered mine from Amazon and was very happy to find that it was a well-built and powerful item. I have watched it open dozens of containers over the past few months – everything from pickles and olives with very wide mouths, to small cap items such as liquor bottles (for medicinal purposes only of course). The instructions say that you should not use it on plastic bottles, but I have opened many a juice container made of plastic with no problem whatsoever. Since it is battery powered, it requires only enough strength to place it on top of the container. You press the button for a couple of seconds to get it started and then let go and it does the rest on its own.

I’ve provided a link here if you want to check out the item on Amazon.

Sep 152010
 

When a body is weak, you can often find help by returning to basic physics. I have found that leverage, gravity and momentum are all incredibly useful tools when trying to get a job done. Today I will show two simple examples of leverage.

A workshop vise with a 4" handle.

The handle on my vise is too short and very hard for me to grasp.


I occasionally need to tighten a vise when I’m making a gripping hook or other tool. The little handle that comes with the vise is only 4 inches long and very difficult for me to get a good grip on since my fingers don’t bend.
A length of pvc pipe over the handle of a vise.

Adding a length of pvc pipe gives me four times the strength I had before.

But when I add a 16 inch long piece of PVC pipe, I can apply four times as much pressure, not to mention that the pipe is much easier to grasp.

Another example: I have taken up sewing (a lot more about that later) and from time to time find it necessary to change attachments on the machine. The manufacturer provided a special screwdriver for that purpose, however it has a handle just one half inch in diameter. Again this is almost impossible for me to grip and twist.

Using a visegrip to hold and turn a screwdriver.

Securing this tiny screwdriver with a visegrip lets me use it on my sewing machine.

The solution? A small visegrip. When it is attached to the screwdriver I have a 2 inch wide handle giving me four times the turning power as before, plus a shape that I can hold in my palm.

In a future post, I will show how I use gravity and momentum to solve problems around the house.

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.)