Hello everyone,
I’ve had RRMS for a number of years but have now entered the SPMS stage of my journey with MS. Having been diagnosed over 20 years ago, with very few episodes over that period, it was fairly easy to bury my head in the sand and crack-on with life. My reality has shifted now - movement is not as simple as one foot in front of the other and walls and furniture are my new best friends in my home.
After years of prompting from my wife to reach out to others on forums etc I’ve finally relented (she’s always right but it takes me a while to recognise it!). Here I am. Hello. Happy New Year (I guess 8 days in is still ok to say it!).
Best wishes all,
David
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Well good for you: there’s no point in making more room for MS than you have to any sooner than you have to.
I am sorry that MS is becoming a more demanding houseguest. Welcome to the community. I have found much friendly support on here and I hope that you find the same.
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Hi David,
Furniture slalom is a good skill to perfect! I don’t want to be in an MS club, but I find this place sufficiently anonymous, and full of interesting people willing to empathise from a point of real knowledge and to support and share in a useful way.
All the best
Mick
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Hi David, welcome to the group. Our journeys seem to be similar although I was only diagnosed 3 years ago with SPMS although they think ive had RRMS for 20 years previous to that. Furniture and walls are good friends of mind too - i have bruises that appear from i dont know where!!
Are you on any medication? how are you finding coping with SPMS?
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Welcome to the forum.
New to MS (confirmed dec 22) but been here a while.
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Thanks for the reply. Having the chat with my consultant in December focussed my mind about where I was at. Difficult to hear but useful too. Covid took away some of the usual touch points that may have been available over the last few years so getting some more concrete feedback face to face was helpful I found.
In terms of medication I’ve been injecting Avonex once a week. It’s something I’ve got used to but as a beta-interferon it’s more about stopping further episodes rather than anything more definitive.
Thanks Mick. My slalom has had a number of falls on the way down but when you have the right route laid out (and the right equipment) it makes it easier. My rollator makes a big difference (once I got over using one!).
It’s been really nice to hear from so many people…it’s a difficult journey but it’s made easier knowing there are helpful people around to talk with/listen to.
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Our skills at picking routes and judging gaps does improve. My initial psych barrier was use of a stick until I worked out how useful it was so have embraced using a rollator. I still dislike use of a wheelchair although I am pragmatic enough now to just get on with it when required. It is strange which new life skills we have to learn.
Stay the right way up and things will be ok. Maybe not great but ok will do.
All the best
Mick