I was just doing the maths and there must be 15000 people in the U.K. with pp so I was just thinking how many have used this forum. At a guess I’d say less than 5%.
But what you are forgetting is the silent ones. The people who read the forum but never join in, often don’t become members, just read the posts, get inspiration and help from the people who post.
So while you can say only 5% with PPMS join here, you’re forgetting that reading the forum is open to all. And that in itself is what scares some people and stops them from joining in - fear of exposing themselves to the public, worry about not being able to express themselves in writing, concerns about how people who know them might read what they’re writing, or those for whom English is a second language.
Whatever the reasons, those of us who do post our experience, thoughts, worries, knowledge, even our nonsense, are in a way doing it for them too. I’m happy that people might get some help and comfort from reading the forum even if they don’t join, and/or never post.
I don’t visit as often now but still check in to see how people are
Always nice to see you on here Sonia, hope you’re doing ok?
Twinkle Toes x
Statistics are fake & don’t show the truth, is my theory.
There could be 15,000 people out of the +70,000,000,000 population, but how many are genuine & are they over a legal age.
My experience of being diagnosed with Primary Progressive is. I’ve met one other person with PP in person, in 5 years & she has since died. The cause of death, was apparently lung failure. I’ve also had a few stupid friends, claiming they have PP out of thin air, as soon as they think they can get out of work. They have since moved on to claiming they have other conditions. Anything to claim PiP & get out of working.
Then you have to factor in the fake diagnosis, by fake medical professionals. And that actually happens. The scammers.
Some of those diagnosed, don’t use computers. Not everyone does.
It’s not illegal, yet. To shun computers & how easy it makes life for the apparent geniuses, who can’t even tie their shoe laces.
The most common question people ask me is. What’s wrong with your leg? And before you can answer, they have a bad leg too, but they still go to work & anyone who doesn’t work is lazy.
There’s lots of things to factor in on the Maths.
It’s best to just get on with life & the situations we’re in.
Every human being on planet earth, could fit on Great Britain & it’s a tiny place, compared to the size of the earth. Yet we are apparently over populated.
Same back at you
Twinkle Toes x