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Why I Help Moderate This Forum, My Anniversary Month
Recently, when discussing topics and ideas for an upcoming Podcast, we were asked why @ashleygregory757 and I moderate this forum. Good question. I can only speak for myself, but I believe Ashley and I share some of the same motivations. I think we like communicating with others and getting altruistic satisfaction by helping others with LEMS. Ashley is a nurse, and I have been a Registered Respiratory Therapist, both of us working in a hospital setting. It was a second, detour profession for me, but Ashley’s primary career. It’s my observation, working in a hospital setting, most medical professionals get great satisfaction helping others with their medical problems. In a hospital, these are often severe and can be life-threatening. I believe this is why I enjoy being a LEMS forum moderator so much.
This month is my second anniversary working for BioNews, the Lambert-Eaton forums, and other rare diseases too. My primary background is in communications, having worked in broadcast radio and TV for over 30 years. It has always been my first love. I was originally hired to record audio tracks which are produced into Flash Briefings and are available to listen to on Soundcloud, Apple, and other such platforms. In the first couple of years, I’ve recorded for Lambert-Eaton, Spinal Muscular Atrophy, and Multiple Sclerosis. The big bonus here is I learn so much about them by reading and recording these audio tracks.
Because I have LEMS myself, the opportunity arose in the first year for me to team up with Ashley and moderate this forum. I’d never done anything like this, but hey, throughout my career, you “fake it ’til you make it”. It’s been educational for me and great fun!
So, there you have it. My second anniversary doing all this with BioNews is here. If you’ve read this far, thank you. I do all of this for you too.
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2 Replies
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Price, I was able to convince my neurologist to try time release Mestinon. You have mentioned that you take one 12 hour pill and three 4 hour pills. Would you care to elaborate why you do this instead of taking two 12 hour doses?
Thanx!
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@bernie Oh sure! I’ve done it both ways. Originally I took one 60 MG Mestinon tablet along with my Firdapse dose every 4 hours during the day.
Later, I began having LEMS weakness problems at night so we added one 180 MG time-release tablet at bedtime to cover this period. I believe it helped.
Since this was working, I got the idea of that taking two 180 MG time-release tablets, one each 12 hours would be ideal. And it could be.
However, my LEMS was getting worse. Doing the calcuations, four 60 MG tablets in the daytime equals 240 MG. Only taking one time-release was 180 MG, so less than I was taking before. I’ve gone back to my original schedule, as previously mentioned, four 60 MG tablets a day with my Firdapse, and the overnight time-release. I hope this helps. And as I mentioned, Mestinon was the first medication I was given, and I noticed results. I know it works for me and my LEMS.
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