Thursday, February 14, 2013

My First MS Support Group Meeting

I went to my very first MS Support Group meeting today. As expected, I was well received. The folks were absolutely wonderful. We had people from all walks of the MS journey. We had wheelchair users. We had cane users. We had people like me, who can still walk without help. We had spouses and caregivers. We had all been affected by MS in some way. We all had support as our main purpose for being there.

They let me talk for a bit. I, very briefly, told them my story. We had an hour and a half. There were three other new members. If they let me I could have kept them there all day and into tomorrow, but I had to squeeze my story down to a few precious minutes. Somehow, I managed that. I think I apologized more than once for dominating the conversation. They were very forgiving. I brought up a few things that they seemed interested in hearing about.

I told my Support Group about my MS doctor, getting diagnosed, that whole story. I told them about my involvement with MS Walk. I think one of the ladies sat at my table last Fall following the Walk. One of my ideas that I presented to the MS Walk organizers was to start an MS Walk in my community. That idea was met with a negative, but I may have parlayed that into a seat on their organizing committee for the next MS Walk. Later this month, the organizers are throwing a party for the contributors and I am invited. I'm going.

What else. I had volunteered for that CCSVI study with UT, and the Support Group liked hearing about that.

I asked about Ampyra, the Miracle Walking drug. There was a story told at the start of the meeting about one Group member who couldn't attend, because he was at an MS-sponsored function and he had fallen, breaking his hip. He was out of action. He had been wheelchair bound, then started taking Ampyra, and now he was walking! His fall is totally unrelated to Ampyra, by the way. Anyways, he is one success story when it comes to Ampyra. My story does not have me taking Ampyra. I have two months supply, but because of fears about the side effects, I have not taken it. Besides, as I stated to the Group, I can still walk without Ampyra, so why do I need to risk the side effects? Okay, enough on that. Except, let me say, we all personally signed a get well card for our fellow member who's hip is broken. Nice touch!

Okay, so far, this is mostly about me, but believe me, other people got in their two cents. It wasn't all about me. It was a good morning spent well. I will be going back. I enjoyed the people. They made me feel good about going.

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