Day 5 & still alive.

Primary progressive MS
1

Greetings fellow PPMS sufferers. Hope everyone is doing okay.

Seems a hive of activity in cool Stoke-on-Trent, roll on summer.

Absolutely no news from PiP yet. My fingers are crossed.

I’m struggling to walk these days. In need of some positive news.

Terry

2 Likes
2

Here we go!

  • The referendum never happened
  • Clinton won the election
  • David Bowie is still alive and living in Australia
  • PIP has been abolished
  • The cure for MS is a 500g of chocolate per day every day
  • And is available on prescription (1 month per 'script)
  • Stoke on Trent is next year’s Capital of Culture

OK?

Albrecht Durer

5 Likes
3

Another year of idyllic life. Dragging myself to some event, that ends up being a painful waste of time.

Not sure how to reply Albrecht Durer.

  • I was unable to vote on the political jokes. Medicated to a cabbage state.
  • Local candidate was Labour & Conservative, which caused problems deciding.
  • Voted to stay in the EU & now it’s become England or is it UKIP.
  • Assessed twice for PiP. Awarded full the first time & now get nothing when I can’t walk.
  • Now told I’m lazy, when I’ve had everything taken. My job, vehicle & life.
  • Eat nuts & become surrounded by nuts. Then turn into a nut. PPMS is such fun.

Your text chat seems like how this world has become, very muddled. It was the reason I chose my username. I couldn’t figure out what was going on. It’s sad about David Bowie. He was awesome. The burning man, will look after him. A very odd few years it’s been. I’m told all kinds of gibberish by locals. Who do we believe these days? Took me a year for the diagnosis to sink in from nowhere. Now I know, the locals say I’m making it up. Yet still want my vote.

(scratches head) Perhaps I should go & see a GP. Or a Nuero Psychologist. Mybe they can tell me why I can’t walk. Or should I try & stay positive until the politicians fix the problems. Maybe I should be an MP. I do live here & know what goes on.

Take it easy out there people. It’s all gone a bit Pete Tong.

1 Like
4

Thoughts are with you hun, if you need any help, pm me. I was rejected after 1st assessment, moved to basic after Mandatory Reconsideration… then it was re-reviewed by DWP whilst I was waiting for a court date for the tribunal - they changed both elements to enhanced.

I’m relieved to say I’ve had my first review and all has remained the same.

Whilst I still believed there was an element of RRMS to it, PPMS is what I was diagnosed with and I’ve never gotten better but I still remember the first assessor repeatedly asking me what I was like on a good day!?

Good luck

Sonia x

5

Cheers Sonia, since my diagnosis of PPMS 3 years ago, I just get accused of making it all up.

I agree with the experts, yet why do some people still think I’m faking it? I struggle to walk.

Shown multiple scarring in my brain & spine. It’s explained, why my limbs are wasting away.

It’s like I’m lucky or something. Very bizarre behaviour & accused of either being drunk or nuts. If I fall & get frustrated.

I’ve broke my foot so many times, I’ve lost count. Another hospital appointment next month & maybe the ability to see how other people with MS are coping. If I stay in much longer, because of MS. I’ll break down & I need to get out.

To see some decent folks & do normal things.

Take it easy out there, anyone who knows what PPMS is like.

Terry

6

We can’t all be making it up…or can we?

i feel much better today than yesterday, don’t know why or how long it will last. But th world is still mad…I can’t think about it too long, because the reality just seems laughable and unreal. Trump? Really. Eu not.really. Blah blah blah, my legs and eyes and hands and bladder etc etc are still shite, but I feel better than yesterday…your mind is a powerful thing and maybe it’s just because it’s sunny.

I seem to have wandered off track, I do apologise. X

7

Terry, to those people who think we’re making it up, I hammer their pages and personality with the facts from this website. I tell them about Ronnie Lane and Jaqueline Du Pre. When I say I have a chronic illness people may just nod and indulge me with my little fantasy. We must keep talking on here and discover our experiences; especially with explaining our condition to others. After thirty years of teaching and giving to others, bearing in mind their confidence and dignity, I find I am now finding ways of putting the cynics and the ignorant in their place.

I’ll stop now because I’m getting a bit red.

Best wishes, Steve

8

I read a very good thing the other day on one of those quotation sites I kept on my pinterst site somewhere it read something like this

WHAT OTHER PEOPLE THINK ABOUT YOU IS NONE OF YOUR BUSINESS if you start making it your business ou will be offended for the rest of your life

basically there will always be someone who thinks ill of you (bad choice of words)

Don,

the one who crosses the road to confound those who think ill of me biblically it is called heaping burning coals on their heads which I then fan into raging fires. DONT GIVE A DAM WHAT OTHERS THINK

9

I read a very good thing the other day on one of those quotation sites I kept on my pinterst site somewhere it read something like this

WHAT OTHER PEOPLE THINK ABOUT YOU IS NONE OF YOUR BUSINESS if you start making it your business ou will be offended for the rest of your life

basically there will always be someone who thinks ill of you (bad choice of words)

Don,

the one who crosses the road to confound those who think ill of me biblically it is called heaping burning coals on their heads which I then fan into raging fires. DONT GIVE A DAM WHAT OTHERS THINK

1 Like