Category Archives: Online Support Group

Online Support Group, PMA Update

PMA Facebook Group Update

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PMA Facebook Group Update

PMA Facebook Group Update

Since we have now grown to almost 90 members, I thought that it was about time for a PMA Facebook Group Update. This group was founded just over a year ago and I am happy with its growth, even if participation has been a little spotty. Nevertheless, I hope that it has been of help to some of our members. Progressive Muscular Atrophy is a relatively small subset of Motor Neuron Disease in general and ALS in particular.

The group grew from the need for a place where questions and problems specific to PMA sufferers could be discussed. To date, we have kept the meeting private meaning that information found or discussed in the group cannot be seen or searched by non-members. Unless members decide otherwise, we will keep it that way.

New Chatroom Meeting

A few months back, we implemented a Zoom Chatroom meeting and held a few sessions. Back then, we only had about 30+ members and attendance was spotty and usually the same individuals. We were never sure whether the lack of attendance was due to lack of widespread notification, reticence to use Zoom or general lack of interest?!

In any event, now that Facebook has opened its own video/chat sessions within its groups, we have set up a new chatroom which can be accessed group  members only:

https://www.facebook.com/groups/ProgressiveMuscularAtrophy/rooms

Our inaugural meeting will take place on Monday July 12th at 3PM EST. Of course, all members are welcome. It has been added to the schedule.

Online Support Group

PMA Online Support Group Update

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PMA Online Support Group Update

PMA ONLINE SUPPORT GROUP UPDATE

Since we have now had 4 Zoom meetings, I thought that I would take this time to issue a PMA Online Support Group Update.  Although we have started out slowly, each meeting seems to have more participants than the previous one.

We have had participants from all over North America and,  speaking for myself, this is the first venue where I am able to discuss problems and solutions with ONLY those who have the same diagnosis and similar symptoms and progressions. It is clear that there was a need for a Support group of this nature.

Ongoing Schedule

Although I had originally thought to make the meetings weekly due to the current lockdown, (Apr – May 2020), it may be better to move to biweekly sessions. I will not make the switch until I have canvassed the members of our Facebook Group, which now numbers almost 30 members. I will post a poll to see what the consensus is on this. As before, you can get the link to the next upcoming meeting on the schedule page. 

Discussion Topics

So far, we have largely held open sessions with no particular format. However, going forward, I would like to have a selected topic each meeting to help to focus conversation and encourage members to share information that they might otherwise not realise could be helpful to others. The overarching goal of these meetings is to highlight areas where the specific needs of a PMA sufferer may differ from other pALS. Potential subjects could include but not be limited to:

  1. Current Medications – Radicava, Riluzole, 
  2. Power Wheelchairs, scooters, walkers, etc.
  3. Over the counter medicines and supplements
  4. Online and offline sources of trusted information

I would encourage others to put forward any suggestions that they might have either by commenting here on this site or on the Facebook Group

If you have not yet attended one of these meetings, I would highly encourage you to drop in. You might be very surprised what you might learn and how you can be helpful to others in the same situation.

 

 

 

Online Support Group, Uncategorized

PMA Online Support Group

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The PMA Online Support Group is about to go live!

Mark your calendar for 3PM EST on Monday, March 30th. That is when we will hold our very first PMA online support group meeting:

https://us04web.zoom.us/meeting/418743762

Clicking the link above will take you to the Zoom Video chat website, where you will be asked to download the appropriate app for Windows, IOS or Android. You will need to do this prior to entering the chat room.

N.B. You do NOT have to establish a Zoom account to take part in this meeting. You DO need to download and install the software, however.

There was NEVER a better time!

With all the social distancing brought about by the current COVID 19/Coronavirus pandemic, many PMA sufferers are shut off from much of their usual support, both  medical and social. We are hoping that this meeting will help to fill the gap. We can share hints, tips and experiences to help others, whether PMA sufferers or their carers, to overcome some of the additional obstacles and problems brought on by this once-in-a-lifetime situation.

Hopefully, The First of Many!

Provided that there is sufficient interest and participation, this will become a weekly event. The meetings will be limited to 40 minutes in length (a Zoom restriction to maintain FREE status). This seems to me to be a perfect length of time. Going forward, we will choose a weekly topic and after approximately 5 minutes of introductions,  we will devote 20 minutes to this topic and use the remaining 15 minutes for general discussion. This is only an initial suggestion to give the meetings some direction and structure and is open for discussion.

How ZOOM works

The process is simple and seamless. For each meeting, there will be a link to click. Whether you are using Windows, IOS or Android, the process is the same. You can go to the Zoom Website for a detailed explanation. You will need a cellphone, desktop, laptop or tablet with both a microphone and video (not compulsosry). Simply click the link and follow the instructions. You will only have to install the software once on each device that you use. You can do this ahead of time if you wish but it only takes a few seconds, so this is not critical. The website above does give some hints for optimising your experience.

We look forward to seeing you on the call. In the meantime, join our Facebook Group, which is where we will post scheduled meetings and other relevant updates. You can also check out the large amount of information contained on this site.

To save you scrolling up, here again is the link to enter the meeting:

PMA Inaugural Online Support Session