I do still sometimes wonder what I did to deserve this, not so much out of self pity, but at frustration at not being able to do the things I used to take for granted. I won’t list them, I’m sure you get the idea, and will have your own lists. I’ve been thinking about the things people said when I was newly diagnosed - “They can do so much for it nowadays” and “They can stop it in its tracks” I’d love to know who “they” are! My favourite was the lady who almost unbelievably said, “the good thing about that is that you’ll never be depressed!” Puzzling to say the least but based on the fact that when her husband was Mayor she’d met people with MS who were really cheerful and happy! I’ll make no further comment, you can draw your own conclusions.
I sometimes reflect on the bizarre, like the people who on seeing me in a wheelchair seem to have this irresistible urge to pat me on the head, or the time on holiday when we just happened to be outside a church and a man approached and asked if he could pray for me. Of course, why not, I didn’t however expect him to drop to his knees there and then in the middle of the pavement, grasp my hands and start to pray out loud!
I also wonder why there seems to be so little interest in those of us with PPMS, I wonder if I’d have had more support if I’d been diagnosed in my twenties, rather than when I was approaching fifty.
I also wonder that in spite of the millions which must have been spent on research we don’t seem to be any nearer a cure or effective treatment. In 1992 my neighbour who was pretty severely affected by MS, died from pneumonia aged 46. She believed a cure was just around the corner.
I’ve treated myself to a power chair with a range of 22 miles, so I can go out alone, under my own steam again. Something I’ve not done since I gave up driving in 2009. A little bit of independence will be really good, if a little bit scary at first. I’ve had it a week and not gone beyond the garden gate yet!
The power chair sounds great. Independence is possibly one of the worst things to lose, and one of the things I dread the most.
I drive an automatic car now as can’t trust my left leg/foot not to spasm on a clutch! I was only diagnosed in 2018 at over 50 and people say to me, " Oh well you’ve done most of the things you want to at least…" Have I heck! With a 23 yr old only just finding his way due to autism and a 16 yr old at home still in need of very active parenting, I’m hoping so much that I’ll get a few years with hubby to enjoy the interlude between being a full on parent and being ‘old’ (whatever that is these days)
Luckily I don’t seem to have had any relapses since diagnosis, but symptoms are steadily progressing.
It has always seemed odd to me that there is so little active support for PPMS’ers from the MS teams. And research - yes! Probably stupid amounts of money spent. I read in the Telegraph recently that UK are starting trial of existing drugs used for other things, to see if any of them can stop or reverse progression. That sounds interesting.
I’m really waffling, apologies, cannot sleep but super tired. Just wanted to acknowledge your post and send a hug x
Great Post! As someone who spends a lot of time praying, I would never, ever drop to my knees and pray like that in public. And I would never assume that because someone was in a wheelchair they wanted to be prayed for. It was treating you as ‘other’ which is wrong. I’m sure they meant well but it was a misunderstanding of life as a disabled person …apart from being just plain old embarrassing!
I could have written that! Never done a forum before. Don’t want to be defined by MS. Still working full-time nights. Can walk holding on to things. A manual wheelchair for out and about
Buggered if it is going to get the better of me, then it has won and that’s not going to happen.
…but not to worry, we’ll all be OK when ‘they’ get it sorted…