Update on Sheldon Brown

[Torrilin]

It doesn't alway mean inactivity or disability.

Nope. But it's easy for a seemingly minor MS symptom to take away an activity that someone loves. Dan, the family friend with MS, was an organist. He's still a great musician, but he'll never play the organ again. He started out playing with superhuman perfection. He slowly started making mistakes, and then suddenly, it was more mistakes than music. I'll never get to hear him play again. I'll still get to hear choral music that he directs, but a choir isn't the same, and it's not the instrument he loves best.

Unlike a lot of other chronic diseases, there's no good treatment for MS. There's not even a way to reliably slow the progression of symptoms. People can live for many years with no real trouble from the disease, and then suddenly need a wheelchair.

I really hope you and Sheldon don't go through anything like what Dan did. It's awful to watch, and it's got to be worse to live through it.

[salsabike]

I think I will just quote Carolyn Hax on this one and leave it at "Wow." (MWBR if you do Hax research)

Here's part of what Sheldon has quite recently written about MS:

"Multiple Sclerosis is a nasty, rare, incurable disease, but there are lots of nasty rare incurable diseases out there.

As nasty, rare, incurable diseases go, it's one of the better ones. If you must acquire a nasty, rare, incurable disease, MS is one of the best things going!

I should mention that MS comes in many different forms , and the different forms have multiple variations. I'm really only able to address my own variant. YMSMV.

My particular flavor is "Primary Progressive" MS. This type represents about 15% of MS cases. This type tends to appear in older folks (I was pushing 60 when the symptoms started to become noticeable, and 63 when I was finally diagnosed.) My own case only affects me from the waist down, an my neurologist doesn't expect it to spread northward.

I think of it as not so much a "tragedy" as a Really Major Inconvenience.

Anyhoo, rather than focusing on the negative, this article is about the good things about MS:"----

and he goes on from there to discuss the good points. He is just the best.

His whole family seems to be pretty amazing. Reading his blog is something else. They're really brilliant, intrepid, creative, close, all four of them. It's just a pleasure to see.

[mimitabby]

he really has done a lot for the bike community. His website is so thorough that I am surprised when i DON'T find something on it.

[onimity]

Thanks for the update, salsa.

Salsa, SK, I agree. Disability is such a nasty word, really. I think that we all have challenges, from the very minor to the very major that could stop us from expressing our abilities. I worked with a wonderful woman with MS a few years back, a tremendous athlete. I wouldn't have known that she had MS except that she told me. Her take was that she could be completely paralyzed in a car accident tomorrow but she perhaps appreciated what she could do today more than others and she knew that she would always be able to find things that she loved to do.

MS manifests itself in so many ways and with such different levels of severity that it is problematic to clump every case together.

Torrilin, when you say about your friend:

"He's still a great musician, but he'll never play the organ again. He started out playing with superhuman perfection. He slowly started making mistakes, and then suddenly, it was more mistakes than music. I'll never get to hear him play again. I'll still get to hear choral music that he directs, but a choir isn't the same, and it's not the instrument he loves best."

I honestly think that you sell your friend short. A single instrument is just a single means of expressing his talent and ability and it seems to me that with your perspective you see so much more as being lost than has indeed been lost. It sounds like your friend is still quite able in spite of a lack of coordination and muscle control. You can be stuck in the past or you can choose to celebrate your friend's abilities as they manifest themselves now.

I so admire Sheldon's attitude and good perspective. I love his comments on the good parts of MS and the good things about riding his trike:

"My theory is that motorists drive most of the time with at least part of their brain on "autopilot", with a mental subroutine that automatically categorizes the sights along the road..."that's a sedan"..."that's a tree"..."that's a motorcycle"..."that's a pickup truck"..."WHATTHEHELLISTHAT!" A recumbent trike seen from behind does not fit into the usual categories, and this brings up a mental alertness subroutine. You really get their attention! That's why I never replaced the flag that came with my trike after I broke the pole offroading."

I love that he is such an enthusiastic cyclist with or without MS. Being able to turn the pedals on an upright bike is such a small part of that. He has taught me so much and continues to. Rock on, Sheldon, I say.

Anne