Yes, I have lost very many friends of the forum WoS.
Some to MND but many others to inadequacy of care.
I am forbidden to chat further(Big Sister is watching)
-
On Sunday 27 th Feb
Thomas my husband will have been diagnosed 19 months. I post his questions and ask my own, as a carer.
You have all been amazing support, fonts of knowledge and wisdom.
I appriecate you all.
I have notice the absence of people on some of the Facebook groups and try and check in here often.
Keeping on, keeping on
Thomas and I have tried to talk about his digital presence and what to do about it. Any advice welcome.
He can't type and eye gaze is still not been sorted. not sure if it will work for him.
Leave a comment:
-
WheelsOfSteel Iβm 14 months post diagnosis and this is my first real community. I can see that there are a small number of regular posters so anyone who suddenly disappears will be even more obvious in their absence. At least we have had the chance to be a part of this supportive group.
Leave a comment:
-
I am a member of a small mutual support group with same MND problem as me - lost voice etc . We meet every 6 weeks and keep in touch by email. No one else posts on here. One of the group died a couple of weeks ago and the rest of us went to his funeral last week. Although it wasnβt too much of a surprise because he had been very ill for a few weeks, it was sudden and a shock. It has affected me more than I expected.Leave a comment:
-
I intend inventing an a logarithm that will post in my place for the next 100 years. There might even be a cure by then.If it is a bit rude to anyone I apologise in advanceLeave a comment:
-
Bear in mind too that sometimes members decide not to use the forum anymore, or are unable to, for a variety of reasons, not necessarily because they've died.Leave a comment:
-
Agree with all the above sentiments, and it is worrying when people just stop posting. I really value the support and friendship this forum gives and itβs so important that it is positive and constructive for everyoneLeave a comment:
-
I was thinking the same thing. I've seen a lot of friends leave and I pondered what at happened, if they were ok, had they just well .... it's very sad.
Love to everyone. At least we have each other.Leave a comment:
-
Oh yes nothing can be more true. The rotating door as I call it.
And it brings the rotating door of hyped treatments etc etc.
A few months ago I sat and pondered what it must be like for MND charity staff as well. They are human like us, and what must it be like to see generations disappear etc. it gave me a much more understanding view of their job. Well, I can't call it a job really, it's more of a calling.
They often face terrible criticism, none of which I share. Are all organisations perfect? No of course not.
We have to do the best thing for those who will be diagnosed in the future and not do anything that may slow progress, despite what that might mean for us as individuals.
We are at a great time for research in our disease.
Keep positive guys
LeeLeave a comment:
-
WheelsOfSteel I had similar thoughts. I think it's sad when members of our forum just stop posting and we hear no more. Reminded me to ask someone to post on here for me when it's my turn.
Yes we're stronger together in this space βπ»ππ»πLeave a comment:
-
Membership "Turnover"
I find myself sadly reflecting on the rate at which I see folks come and go here.
When I signed up to this forum just a couple of months ago I discovered people who had been suffering for years, and I thought I would be "the new guy" for ages.
In that short time I have found myself writing welcome messages to so many new members, and saluting the dearly departed who have fallen from our ranks.
MND is indeed, a bitch, and I find this forum an essential place to find a sympathetic ear.
Let's keep being excellent to each other - while we can.
Leave a comment: