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 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 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 092010
 

My wife seated on a small three wheel scooter

My wife shopping for her first scooter.


When is it time for a scooter (or wheelchair)?

From the moment I was diagnosed, I have had a simple philosophy about using the various mobility aids that are available to us. I say use them all if they make your life better or safer! I know there are those who feel like using a scooter is “giving up”. But it is important to realize when pride is getting in the way of your future lifestyle. I have seen people trying to walk whose leg muscles are so weak that their knee joints are bending backwards at almost a 45° angle. For me, after I had made several trips to urgent care and come away with casts and bandages, I realized that walking was an adventure I couldn’t afford.

Unfortunately, Medicare doesn’t have a very enlightened attitude about the mobility needs of the disabled. They have always operated on the philosophy that if you were able to get from the bed to the toilet, you didn’t need any more help. Fortunately for me, I was not yet on Medicare when I decided to get a scooter and I was able to write a convincing letter to my insurance company explaining that it would save them a lot of money to get me a scooter so that I would stop falling and breaking things. Amazingly enough, it worked.

Once I had my scooter, a three wheel model (more about that in a later post) it was as though a whole new world had opened for me. I loved taking it for drives around the neighborhood, to the stores, to the library, to the post office. Once again I was able to get out and enjoy the fresh air. As my weakness progressed, a new challenge emerged: how could I take my scooter with me on driving trips, such as on vacation? Fortunately, there was a solution for that as well, although it wasn’t inexpensive.

The same mobility store that sold me a scooter also carried vans that had been modified. The most expensive type are those which have a ramp that automatically deploys so that you can drive right up inside, but I wasn’t in need of that just yet. Instead I purchased a used Plymouth minivan that had a swing-out lift in the rear. With that I could pick up the scooter and place it in the rear of the van and then carefully walk around to the driver side and get in. This worked for several years, until I got too weak in the legs to safely maneuver around the outside of the van. Two serious falls occurred during this process and that told me I was ready for the next level of van.

But before that, I had also reached another milestone–I was outgrowing my scooter and ready to graduate to a wheelchair. In the next article, I will talk about some of the differences between scooters and wheelchairs and some of the many decisions that need to be made when you select one.