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Do you participate in or attend support groups?
Virtual or in-person – do you find value or benefit in engaging in support groups?
Why or why not?
If you find it valuable, WHAT do you find the value in?
If you don’t find it beneficial, why not? What makes it something you don’t participate in?
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11 Replies
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I’m in an online support group. The value to me is that I’m not alone, it’s a safe place to ask dumb questions.
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That’s wonderful! How long have you participated in support groups? -Jodi, Team Member
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I became member of DMG (German Myasthenia Society) and try to participate in meetings of local groups. Given that I am still feeling socially isolated in my second year as a MG patient, contact to other patients made a difference. For the first time I really felt understood and accepted. Right now I am taking further steps to cope with isolation.
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I would like to try out a support group, however there is not one within 100 miles of my location. Rare disease, therefore scattered special people that have a need. But do not be concened God is in control.
😎
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I’m in a small in-person support group in Albuquerque. We actually have more than 20 names on our group list, only 8 of us show up. I think next month we will try to get an online group together. It’s very useful due to the wide variety of how different people’s bodies are affected by the disease.
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Yes, I participate in a a support group on Zoom.
Why? I don’t feel alone and it is a safe place to ask question that I wouldn’t ask anywhere else.
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I would love to go to an in person MG support group in Charlotte, NC but it shut down during COVID and never restarted as far as I know. I was on a list for when it was suppose to restart but that never happened.
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We did have a support group and it was enlightening but our numbers were small and it usually was the same 4 or 5 members who showed up. Somehow, as our numbers went down from that, it was a case of our leader wanting someone else to take over. I do not think it was the leadership but lack of members and materials for her to supply to keep our interest. I still carry around a sheet of paper with medicines that MG patients cannot take and doctors and hospitals appreciate the information and keep it in my file. This forum helps me a lot also as I am sure information has changed since our last meetings several years ago.
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I am hoping to participate in support group meetings in the future and I was amazed that there was a recent meeting in Berrien Springs, Michigan. However, I was not able to participate and it was only 5 minutes away from where I was staying! In NYC where I live there are meetings also but again finding the time to do it. I was diagnosed in early 2024 but from what I read in the on line chats I have not for the most part have the numerous issues that most people discuss. Although adjusting to Mestinon, I am not sure I would have anything to add to any discussions yet. But still willing to attend and learn as much as I can about what may transpire in the future.
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There are no local support groups in my area. I get I formation on line and stay connected to others that way.
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I have a vision problem and can’t read the light gray colored text on your web pages. The color should be BLACK and have adjustable “weight”, i.e. thickness of letters. Additionally, I need different fonts and adjustable sizes. This would include serif and non-serif font types.
I also notice when the pages are zoomed some text overwrites page elements. You can adapt pages to different device’s screens using Responsive Web Design (RWD). Only use its simplest library features for this site.
There exist addon page markup libraries that offer accessibility and RWD features and are open source, include the written source code, and are free to use on all websites.
Visit Wikipedia article : https://en.wikipedia.org/wiki/Responsive_web_design
Search : “website accessibility features libraries open source”
You can find persons who will volunteer to help giving this website professional appearance just to make a reputation or a sense of helping your efforts. Check with your local Community Colleges. You could post letter sized ads at the College or take some courses yourself.
I’m not suited to creative web projects as I’m a systems level programmer since 1972.
–JSW
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