Dec 222010
 

Rainbow north of our Rancho Bernardo home.

Rainbow north of our Rancho Bernardo home.

The New Year is often a time for reflection and introspection. So in 2010 I took this opportunity to review the highlights (ho ho) of my journey with inclusion body myositis, along with my wife’s struggle with myotonic dystrophy. This is my second annual update. Sadly, my wife’s struggle ended October 11, 2012.

1985-1995 (pre-diagnosis) stumbling while jogging, golf club flying out of hands, difficulty rising with backpack, jogging speed declining

1996 – diagnosed at UCSD Medical Center

1997 – started using walking sticks to help avoid falls

1998 – purchased scooter with elevating seat for distances more than 100 yards

purchased van with lift in rear for taking scooter along

1999 – fitted for full leg braces (KAFO) and forearm crutches

purchased Jazzy wheelchair with elevating seat

had condo modified with ramps at curb, entrances, sunken living room

replaced roman tub with roll-in shower, added roll-up counter in kitchen

bought fiberglass portable rampp

2000 – purchased raised toilet seat

purchased hand controls for van

retired on disability

gave up piano, golf, tennis, took up watercolor

2001 – became coordinator for paint out group of San Diego Watercolor Society

2002 – became Membership Director of San Diego Watercolor Society

2004 – became International Exhibition Director of San Diego Watercolor Society

purchased van with ramp and transfer seat

2005 – purchased Pride lift chair

became Technology Director of San Diego Watercolor Society

began making hooks and dressing sticks

purchased grabbers (six)

Beth erroneously diagnosed with ALS by local Centre for Healthcare neurologist

(two months later) Beth correctly diagnosed with myotonic muscular dystrophy by MDA neurologist

acquired Permobil C500 (Medicare) for Mike

purchased Jazzy 1103 wheelchair for Beth

2006 – purchased Biobidet

became President San Diego Watercolor Society

purchased single story home in Rancho Bernardo (San Dego)

added 200 feet of outside sidewalks for wheelchair access to yard

added ADA bathroom (elevated toilet with bidet, low-lip shower, roll-under sink, room for wheelchair)

acquired hospital bed (Medicare)

2007 – began using shelf liners to lift legs

began purchasing wheelchair pants from USA Jeans

2008 – purchased ceiling lifts for bedroom and bathroom

2009 – purchased rechargeable wine opener

2010 – purchased iPad for drawing, games, voice recognition, etc.

purchased automatic can opener, jar opener

purchased computerized sewing machine (no foot pedal)

made belly bag, art apron, cooking apron, robe, work table, sliding pad

2011 – Lost ability to make horizontal transfers and began using overhead Waverly Glen lift.

Sewed pants that velcroed around me after being lowered onto them.

Hired part time caregiver for showers ( no longer safe to do on my own).

Lost ability to drive, began relying on the bus.

Hired second caregiver and greatly expanded their hours to daily as Beth also needed help.

2012 – Beth began hallucinating.

Moved both of us to assisted living and put home up for rent.

Beth died of respiratory failure due to myotonic muscular dystrophy.

Lost most strength in arms, began using mobile arm support.

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.