Saturday, March 21, 2009

How I explain MS to the layman

As I posted about earlier, whenever I mention to someone that I have MS, my next question is always if they understand MS. It's an invitation to them to have a conversation about MS. If they don't understand it, or have no experience with it, I try to give them a way of understanding it. Things are much less scary if you have a box to put them into, so I give them one.

The box that I use works for me because I used to be an auto mechanic. I can talk about mechanical devices with ease and confidence. My advice is to find a box that resonated with who you are. Mine goes something like this:

MS is a disease that effects the nerves of the body. Nerves are like wires - there's a nerves down the middle that carries the signal and then it's surrounded with insulation called myelin. The myelin does two things, the first is that it protects the nerves from damage, and the second is that it speeds the transmission of the nerve signal. MS is an auto-immune disease, which means the immune system mistakes the myelin insulation for a germ and it pulls off pieces of the myelin called plaques.

That causes two things: the nerve transmission slows down which means that the sensation or the muscle impulse doesn't travel as quickly between the brain and the body, and secondly the nerves can "short circuit" causing inflammation around the nerve, which slows it down even more. The amazing thing is that the body then puts myelin back on the nerve. Then the swelling goes down, and the nerves return to normal. I have what's called relapsing-remitting MS, which means that my immune system pulls of myelin, my body puts in back, and my symptoms are mostly temporary.

But there are cases where the immune system pulls of the myelin faster than the body can put it back, which can lead to scarring on the nerve itself. This is called a sclerosis. MS is named because it can happen multiple times in the body, thus multiple sclerosis. If this happens a lot, it can lead to more progressive and permanent damage in the body.

No one knows why it happens or what causes it, but it's basically this back and forth in the body, so sometimes I have symptoms and sometimes I don't. I'm very open about my MS, so if you have any questions now or anytime, just ask.

That's about how my schpiel goes. Most people understand the image of wires short circuiting and not functioning correctly. Then they get fixed which either makes them work like before or differently than before. I give them a way to understand the condition and then it's not scary anymore. We can talk about it too. Life for me is much easier this way.

1 comment:

  1. Welcome to the MS blogosphere, Aaron.

    I know a lot of computer techy people in my life and was trying to come up with an analogy they would understand as to why my left leg fails when I stand up quickly at times.

    You know when you click a link, or put an address in the URL bar and the website isn't there anymore?

    My brain has a "404 Error - Page not found". I can't help it, but that's what happens.

    I'm not quite sure how I feel about your list, as I'm not quite sure that I have anyone in my life who will be there through everything, and I haven't had a single friend that I haven't had to comfort. So, at 99 days, I'm not sure that I have access to the same tools.