Hello all - have sat here deliberating for days as to whether to post - or not but here goes I am 54 (v nearly 55) and I was diagnosed with Primary Progressive MS in January 2022. I have a young family, 2 boys aged 2 and 5 so I have very little time to feel sorry for myself. I am part of a new drug being trialled which I have been on for 10 months. I struggle with walking but extremely stubborn and won’t get a stick and suggested straps for my shoes to hold the front of my foot up. The boys pass on regular colds and they knock for six each time but otherwise I am healthy and happy but a little nervous of what lies ahead. Have so many questions and excited to be able to speak with others in the same pickle - my name is Philip x
Welcome to the group that no one chooses to join, but it is what it is, and we make the most of it.
Lots of lovely people here always willing to offer help or advice where they can.
Welcome (unfortunately) to the club. I was diagnosed with PPMS aged 58 in early '21 and my youngest is 12, so some parallels with your situation.
I was misdiagnosed for perhaps 8 years, so by the time of diagnosis, the condition was well advanced. I know what you mean about the stick but my advice is not to punish yourself for having MS - make it as easy as you can because, sadly, it’s not going away. For us with PPMS, our best hope is Ocrelizumab which only claims to be able to slow down the rate of progression in 70% of cases. So no cure and no halting, just slowing. Sorry, but that’s tough love.
Nobody else will mind if you’ve got a stick (or a wheelchair - I got my electric folding chair 18 months ago). Tell yourself they’re for “just in case” and then you’ll find things you can do with the equipment that you couldn’t do without. My kids don’t notice or comment on my kit around the house, they’re too self-absorbed to consider others!
Hi and welcome. I agree with Graeme, I didn’t like the thought of having a stick either but mt friend told me "pride goes before a fall " and if I fell because I didn’t have a stick or other aids how would I get up ? probably have to crawl to something to pull myself up and support me…and what would I feel like then?
I’ve got a teenage daughter and I was worried what she or her friends would think…but you can’t worry what others may be thinking …cos they may not be thinking anything…you just have to do whats right for you, and anything that helps is a bonus.
I was diagnosed 4 yrs ago with SPMS. I now have sticks, FES, foot brace,and a scooter and I’ve just had my 1st cruise holiday which I couldn’t have done (or even considered) without my sister and the above. You get used to them.
My Mum had to use a walking stick (sometimes 2 sticks), has special shoes and other aides. We mostly didn’t notice,
If we, or one of our friends asked why she needed the stick etc. she explained simply that some people get wobbly sometimes, but not all the time, like when you spin around and around too much, and that a walking stick helped to stop her from being so wobbly.
It never upset us, Mum was Mum, who sometimes got wobbly and needed a stick to help her balance.