I’m posting this as a snapshot of what life feels like having SP progressive MS.
If you are not ready or newly diagnosed, then do yourself a favour and don’t bother watching for now.
I do hope that it also demonstrates a need among PPSP people to have a a separate forum.
When you are young and hopeful that ‘incurable and progressive’is a short term thing and you have the strength and vitality to fight it all off, well I’m sorry but that stage will not last forever.
And the challenges are far greater, as demonstrated by Maria Mooney’s account. Only PPSP will identify with it, everyone else will be bristling with indignation.
But we have to understand all of it, because as every great warrior knows, knowledge is power.
(and you only have people in your army who are loyal and can be trusted – that’s one of minelol)
To my mind the pharmaceuticals sadly aren’t anymore. They invest far to much money in lifelong money spinning chemo research, instead of trying to find a cure. What we all need and future generations do too. So we must all uninte in pressurising them to invest in an actual cure. Not DMDs we are all sick of them and because of them. And we still rumble to progressive station.
We need a cure. Not a medicinal bandaid that rips all the hair off your arm – if you get my drift. I wish I was well enough but again, read attached.
Best of luck love and light to you all 😇
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