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.

  2 Responses to “What’s Next?”

  1. Mike, I just discovered your videos, and blogs, and your wonderful song, “I will not stand for that!” What a gift you have given me, and your other readers. My husband was finally diagnosed with IBM after about four years of noticing his muscles declining in soft ball games, hiking, especially not being able to get up from the catcher’s position. I guess rare diseases have delays in diagnosis, and that shouldn’t surprise us, but naturally the diagnosis came as a shock, especially to one who loved sports and just general athletic activity as much as my husband does. Reading of your experiences is so good, not only because of your amazing positive attitude of not letting the disease keep you from being the strong, involved, self reliant person you are, –which I must say is a great thing to see–but also the way you document and explain so well challenges you faced throughout the span from your diagnosis until now. Good luck to you, and thank you for sharing your story. The little bit that I read about your beautiful Beth makes me sorry for your loss but happy and appreciative that you were able to spend the terrific years you did together. Thank you again for your words! Meredith

    • Meredith,

      Thank you for your generous comments. Now that I am alone, writing this blog is one of the few activities left for me to enjoy and it gives me tremendous pleasure to hear that I am actually helping someone. Good luck with the journey that you and your husband are now embarked upon. It will be challenging, but as you have read, there are still many rewards ahead.

      Mike

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