Category: Uncategorized

So, you think making your bed is a pain in the ass? Try making my bed (I suggest using the full-screen button on the bottom right of the video): If you don’t see the video above, click here to watch it on YouTube. The blue inflatables can be found here.  The brown inflatable can be… Continue reading Making My Bed

Yep, this is the big five–oh–oh. I’ve been doing this for eight years now, since I stopped working in the summer of 2009. That first year, I spit out 86 posts, 39 of which were autobiographical and entitled “My MS Story Chapter (one through 39).” That was also the year I started writing about CCSVI,… Continue reading 500th Blog Post

There is, and has only ever been, one FDA approved treatment for primary progressive multiple sclerosis. It’s called Ocrevus, and I’m taking it. Every other drug/treatment I have employed in the last 16 years was off-label, rogue, underground, unapproved, unauthorized, unofficial, shady, under the table, or any combination of these. I’m about to do it… Continue reading Hayfever Medicine for MS – Really?

You’ve been so very patient. I announced here, a long time ago, that I was writing a book and it was almost done. Obviously, I lied. Given that this is a memoir, and given that I’ll only have one chance to tell this story, I’ve been rewriting and editing and tweaking. Finally, I am only… Continue reading Book Update

I’ve been asked how it is that I maintain my identity – how it is I keep MS from defining who I am. To a large extent, I don’t. Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a… Continue reading Preserving My Identity

“Watch your toes. My wife says it hurts.” That’s my go-to line when I work my way through a crowd, and it serves two purposes. First, the space allotted for my safe passage widens a little. Second, it lets people in the crowd know that a human being, with a sense of humor, resides inside… Continue reading True Stories About Fingers and Toes

I graduated high school at a lean, muscular, 180 pounds. It’s been a struggle ever since. But I kept things under control by eating less, exercising more, and monitoring my weight by stepping on scales. Today, I exercise not at all, and monitoring my weight has been a logistical challenge because the wheelchair keeps getting… Continue reading A Better Way to Weigh

There are obvious things I miss: walking, driving, taking care of myself in so many ways. But here are ten more obscure activities that I wish I could still do on my own. Breaking a sweat — I can no longer get my heart rate up high enough to break a sweat. I can’t stand to sit… Continue reading Ten Obscure Activities I Miss Because of MS

My daughter and son-in-law moved out this summer, with our blessing and best wishes. This left Kim and I empty-nesters, which changes things. I didn’t feel the effects until Monday, when Kim went back to work as a middle school guidance counselor after having a couple of months off. My disease is steadily progressing, and my abilities… Continue reading On My Own

Ocrevus probably won’t work for me. It’s best suited for younger patients with less disability, and it’s more effective for people with active lesions, which I don’t have. But I’ve got nothing else to try. And, if it does work, even a little, wouldn’t that be a wonderful thing? Ocrevus is the first drug to gain FDA… Continue reading Ocrevus—My Latest Attempt to Stem the Tide