Author Topic: Trialling On-Line Amyloidosis Patient Support Group in Scotland  (Read 665 times)

Mark McConway

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  • Posts: 70
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Hi,

Just wanted to let people know that we are going to be trialling  an on-line version of our Scottish Amyloidosis Patient Support Group over the next few days.

The thinking behind this is simply that we know how much benefit we've had from supporting one another - in 'normal' times - through our group that it could be very helpful for patients, families and carers to be connected in these times where isolation is both sensible and necessary.

With modern technology, it is possible to successfully hold meetings with a large number of people.  We're probably going to start with between 10 and 20 to see how manageable it is - with the prospect of inviting other people from the UK and around the world if it works.

So, two things to ask here...

1.  If anyone is interested in joining us at some point, can you let me know below.

2.  If we find that large groups are not the way to go, is there anyone in other parts of the UK who might be interested in replicating what we're doing for your region.  Again, let me know.

If you are reading this, you will be able to use the technology that connects you to the meetings.  Basically, the meeting's host will send you a link to click on that connects you to your group, after adding your name and maybe a password.  So don't be afraid of the idea that it's on-line.  It's just like having a video chat with a bunch of friends.

I'll update you again once we've had a go at it. 

Keep washing those hands!

Mark




patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Trialling On-Line Amyloidosis Patient Support Group in Scotland
« Reply #1 on: March 20, 2020, 11:12:23 am »
As I was reading this, I thought to myself that’s Mark Mc.Conway. It has his stamp written all over it, it’s just his style.

Good Luck Mark & all Scottish NAC patients for your new venture. You have so much to offer them, Mark.

As you can guess, I’m a big fan of yours. :) :) :) :)
Pat

Mark McConway

  • **
  • Posts: 70
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
On-Line Amyloidosis Patient Support Group from Scotland
« Reply #2 on: March 20, 2020, 05:56:05 pm »
Quick update on our test session today.

We set up a 'virtual' version of our popular support group to try out the technology.

It was excellent.  Seven of us appeared on screen with one person connecting in from Ohio in the United States. 

I cannot recommend this type of collaboration more strongly, given the current state of essential isolation.  To be able to chat with groups of people is refreshing and very good for general wellbeing.

If anyone is interested in joining one of our future sessions (we'll probably do one a week) let me know.

Equally, I'm happy to share the knowledge with anyone who wants to start their own.

Mark

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Trialling On-Line Amyloidosis Patient Support Group in Scotland
« Reply #3 on: March 29, 2020, 06:16:54 pm »
Good luck Mark with your new venture.
I so wish I could join & contribute but with a mouth full of amyloid, speaking is very challenging for me.
However,please keep posting your progress with your new venture.  :) :) :)
Pat

AnnieMac

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  • Posts: 1
  • Reason for joining: AL Amyloidosis patient
  • Diagnosed: April 2019
Re: Trialling On-Line Amyloidosis Patient Support Group in Scotland
« Reply #4 on: March 30, 2020, 03:37:11 pm »
Hi Mark, I’d be interested in joining online for your Scottish forum. I’m in Glasgow, diagnosed with AL last year and had chemo from July-Oct. and now out the other side. I have it in kidneys and spleen.
Anne