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.