The woman in the picture at the top of the blog was my wife, Beth. Like me, she was in apparently perfect health until she started losing strength a few years back. Defying any reasonable odds, she was diagnosed with myotonic muscular dystrophy, another rare disease that slowly saps one’s strength. She died of respiratory failure in October 2012.
When Beth and I were married, we seemed to be in perfect health. We would go for long bike rides and take camping trips to the California woods and mountains. We had two beautiful daughters and fortunately were able to keep up with them during their growing years.
My diagnosis came in 1996 when I was found to have inclusion body myositis. This is an extremely rare illness with only a few thousand cases in the entire United States. It is slowly but relentlessly progressive, eventually leading to total disability.
Her diagnosis of myotonic muscular dystrophy came in 2006. The odds of the two of us contracting these rare diseases is in the billions to one. In other words we could have won the lottery many times over before such a thing would happen. (No such luck!)