|Oct 17 2011|
I went on an mg walk this weekend sponsored by the MG foundation. I was amazed how many people showed up. I've gone from knowing one person that has it (my husband) to meeting one other personlast year and now at this walk.... at least five others. It's so good to meet others because with this disease you feel so alone though this website helps, it is good to meet people face to face and share stories. Some of the most heart felt stories came from parents with young girls with MG. I talked with one man whose daughter had it for six months before she was diagnosed. She spent three months in intensive care and finally, finally found a doctor who knew what she had. They live in a small town! The father looked visably stricken, by the time the energy of traveling from his small town to our large city to visit their daughter in the hospital, the bill, the not knowing. The girl is fine now, and it was wonderful to see the parents feeling good. Another woman is now a spokeperson for the IVG treatments and she looked great. She explained how those treatments have no bad effects and really worked for her when the meds didn't, She gets a treatment every three weeks at home. She says she watches a movie with a nurse and they have a great time! I got her name and I can call her when I need to, that was really really nice.
Walking along, I have to say I have never been on any walks for anything. I was thinking of going on one for MS because my niece has MS. My sister went on one. But I didn't go and there are tons of them happening in my city. But I just never did. When I got the invite for this MG walk, I thought at first, it was MS, but then I saw it said MG and I was kind of shocked. I thought the disease was too rare. I guess there is progress here and the word is getting out.
I met a woman whose father has it so he would be about the same age as my husband and when I told her about me being the one to research and find out info and him not being interested (In fact, he did not participate in the walk -- why? He says because he has no symptoms) and we laughed about that. I met another woman who lives in this area who is organizing a support group. So many things to be thankful for.
The thing that is weird is that I am doing this when I am not in emotional upheaval. I usually wait for a crisis before I do anything, so this was a great thing to do. I was able to ask questions and not get panicy. I am writing down names of doctors and people with MG in the area, in case. God willing I won't need them. Or maybe I can help others. I know a lot I realized. I am a walking MG encyclopdia. I think I spent so much time on the internet researching this disease I could be a doctor.
But maybe that's a little arrogant. I really don't know anything about the brain or all that stuff. Anyway, This is my update. Husband still doing well. I have to ask him if he is down to two Cellcept. I have trouble keeping all these dates straight. So many tests, so many dates. He has blood work once a month, and then neurologist every 6 months, and pills going down 1 every three months. I can't even keep track of my own issues, which are blood tests every three months.
Tests for me
meeting someone with MG!
Not much going on
Caregivers have to take care of themselves
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