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.
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.
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:
- Current Medications – Radicava, Riluzole,
- Power Wheelchairs, scooters, walkers, etc.
- Over the counter medicines and supplements
- 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.