The Unknown

I have written on this blog before about the genetic testing my neurologist recommended. I waited six months or so for the test to come back and at least another month while the results sat on his desk. Well, I finally got my point across to him that I wanted to know what the test […]

Hurry Up and Wait

When I first met with my neurologist, he said that my condition (Dystonia) is genetic—not ands, ifs, or buts about it. So, he wanted genetic testing, and I had blood drawn for a genetic test on October 26, 2015. The company charged $20,210.00 for the test, and, fortunately, my insurance company paid in full. When […]


I recently shared with you some of my personal goals. I did so for two reasons: (1) In writing about the importance of goals, I would have no credibility if I were not willing to set goals for myself; and (2) I wanted accountability. As I mentioned, I have four friends holding me accountable for […]

My Vote

Yesterday, citizens across the Commonwealth of Virginia – my wife and elder son included – voted in Presidential primaries as part of “Super Tuesday.” Although there are many issues I care deeply about – ADA, abortion, war, refugees, welfare, and many others – I purposefully chose in my heart not to vote (I’ll write about […]

Rare Disease Day

February 29. The rarest of all days. It doesn’t matter if it’s leap year or not, the last day of February is always the rarest of all days in the year – the only 28th day of a month that ends a month. Because this is the rarest of all days, this is Rare Disease […]