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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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21 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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Here is a list of some MG support groups and a search tool if you scroll down on the MGFA website: https://myasthenia.org/living-with-mg/find-support/find-mg-support-groups/. Many are conducted via Zoom or video call.
-Jodi, Patient Advocate
myasthenia.org
Find MG Support Groups | Myasthenia Gravis Foundation of America
Whether virtual, in person or in a hybrid model, MGFA support groups are a wonderful way to learn more about managing MG and to receive caring support. In addition to groups organized by location or type (in person / virtual), … Continue reading
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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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Switching support groups to be online is certainly MG-friendly. It is also great that even 8 of you were able to meet in person. That is a unique opportunity with MG, and there is value in speaking face-to-face as well.
-Jodi, Patient Advocate
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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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It is unfortunate that it has not restarted. While in-person meetings can be truly valuable, Zoom or video chat support groups have been popular since COVID-19. Have you considered restarting a group for your area or North Carolina?
-Jodi, Patient Advocate
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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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It sounds like your support group provided some valuable insights, even if the numbers dwindled. I can understand how having a consistent few members can feel restricting and maybe even repetitive to hear the same advice and information from the same people. It’s great that you still have that important information available! Have you recently thought about joining a new support group? Or maybe even considering starting one yourself? With today’s technology, organizing something via Zoom or video chat could be a great way to rekindle those connections and share experiences!
-Jodi, Patient Advocate
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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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It’s great to hear that you’re interested in participating in support group meetings. Learning and connecting with others is super beneficial, even if you may not have much to contribute yet. I understand the challenge of finding time with a busy schedule!
Is this group that meets via Zoom the one you were referring to:
(Tri-State NY,NJ, CT Support Group
Date/Time: 06/10/2025 6:00 pm – 8:00 pm
Second Tuesday of every month from 6:00pm-8:00pm ET
For more information Contact is [email protected] to reach Phil Cogan or Sue Klinger
We also maintain a private Facebook group page. To join, complete membership questions using link at https://www.facebook.com/groups/mgfanyc
Meeting Type: Zoom)
?
-Jodi, Patient Advocate
facebook.com
Log into Facebook to start sharing and connecting with your friends, family, and people you know.
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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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Have you considered joining a support group that meets via Zoom or video call? A few statewide groups connect people from a farther distance, and it could be a great way to find even more support.
-Jodi, Patient Advocate
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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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Thank you for reaching out to us. We sincerely apologize for the inconvenience you’ve experienced with our website’s accessibility features. We strive to create an inclusive online environment for all users, and your feedback is invaluable in helping us achieve that goal.
We appreciate your insights regarding text readability and font options. We’re committed to making improvements, and I will make sure that our tech and design team is made aware of your suggestions.
If you have any more thoughts or additional feedback, please don’t hesitate to share. Your input helps us enhance the user experience for everyone.
-Jodi, Patient Advocate
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Good evening John.
I am a patient advocate and forum moderator for this forum. I am also a website designer and digital accessibility specialist. I am working with our parent organization, Bionews, to remedy all these issues and more. Please message me or email me [email protected] with any other accessibility issues.
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As far as I know there is no in-person support group in the Dayton Ohio area. I would love to be able to meet and talk with other MG patients in person. I do belong to a Facebook group that is supportive and to a Facebook Myasthenia Exercise group that I enjoy.
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I don’t drive and there’s only one in-person group in my area that meets at night and weekends which I can’t make. So I’m in a lot of virtual groups on different platforms. I look forward to them because sometimes it just makes me feel better knowing I’m not alone, and I also see the problems others have that I don’t have, so it makes me feel more grateful. I can’t say that I feel I’m doing anyone else any good by my being there, and hope they don’t mind me. I can’t imagine dealing with this stupid disease by myself
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