Hi guys this is my first post here and just firstly wanted to say hi and well done, you are all ledges!
I am at the secondary progressive MS stage - had it for 26 years and been SP for 6. It’s a horse of a different colour than RR, but managable ! Have kids but live on my own, when they aren’t here.
V tough, but u don’t learn how strong you are by havin it easy eh?
I am not on Facebook or any of that, (it’s a full time job managing SPMS...)
My question is this.. I have gained great wisdom, support and understanding from the wheelchair kamikaze. His posts resonate with me as a fellow secondary progressive. I have never spoken to him, but note that he has not posted since Christmas.
I just wonder if anyone knew why he had gone so quiet?
I know he had a bad run with his waterworks, as have I... (hmm the drug company vampires would be some help if they at least found new antibiotics to fight these resistant bugs...)
Yes, I am worried he won’t be posting anymore words of wisdom and Grace..(or fine tunes...)
Yes, I am worried that his fine voice has been silenced by the ravages of secondary progression....
If anyone has any intel, I would be grateful. His name is Marc Sterck I think (or wheelchair Kamikaze)
Take care of yourselves!
Thanks
Written by
Mermaidia11
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Hi, I don’t recall anyone who goes by that name. I have been on the members list and cannot find either names. Was it this site? Let us know if you find him, blessings Jimeka 🦋
Welcome to a great place filled with people ready to offer support.
I did find a recent post on Facebook from the Wheelchair Kamikaze from January 18. So I hope you will continue to see more posts on his regular blog.
Until then, I hope you explore all that mymsaa.org has to offer. We look forward to getting to know you better. We have many members who deal with SPMS and PPMS, but will we all have a great deal in common.
Mermaidia11 Welcome to the forum! No, I do not know of this Marc Sterck, the WheelChair Kamikaze but he sounds interesting. Please let us know when you hear from him. In the meantime,
Hi and welcome! I don’t keep up with him, sorry, but I do know who you’re talking about. I don’t think I’ve ever seen him post here. Please let us know if you hear anything...I hope it’s just winter woes.
Thanks so much for the replies! Sorry, I wasn’t clear; he is an American dude ( I’m a northern Uk lass) with a blog called wheelchair Kamikaze... (tstch 46 and a total Luddite. - ie Shiite with technology) I’m not on Facebook, but thanks for the heads up! As long as he is alive n ok🎉
I just like reading his blog, he talks sense and reality I reckon...
All of your posts have been helpful, informative and uplifting- thanks!
I’m on my 7th anti biotic resistant uti currently, so a bit befuddled and at a loss as to what to do... but crack on and do my best! The Uti and all the posts have been helpful thanks!x
Mermaidia11 The family here can identify with your search for a friend who understands MS in all its manifestations. Through the magic and mystery of the internet we become connected to others, some become friends; we need and often depend on their presence in our lives, and when a voice significant to us becomes silent, we feel the loss keenly. I hope you find your friend.
That’s so kind ladies, thank you so much. I have never actually spoken to him, although I regret not commending him on some of his genius blogg posts - to me, he spoke the truth and put into words so much of how I have felt. His crusade against the pharmaceuticals and wish for a cure also echoed mine, which was refreshing as a lot of people seem to think and advise DMDS, official ( - aka sponsored by pharma) sites and MS nurses are the answer. My unpopular view is not congruent to that!!
But this brave, fiesty dude / all the way in the big apple; was on the money to me, and one of the few who was talkin my language...
Gutted, I never got to tell him, but hopefully he will be well enough to post on his blog soon.? .
But v v glad I have found this whole family of extraordinary, brave comrades in arms! So thank u for the warm welcome
Thanks for the great welcome! It is like being part of an exclusive club ! I will try and chip in when I can with anything helpful?
It’s harder these days to be consistent with anything!
My fingers and eyes might work one day, but stringing a coherent sentence together harder, and vice versa! Ooh it’s like spinning plates!
I’m angry and cynical, so also have to be careful what I say. Unicorn farts and butterfly wee thinking works to a certain extent; but once you go SP, it’s far harder to rely on positive affirmations, sheer determination and er unicorns!!
Although my little unicorn teddy is a comfort, in the absence of anything else to hold!
Wouldn’t wish this sh@te on worst enemy, so blessings and thanks for everyone’s positivity - And sending lots ur way this day
You’re all ledges !
You can’t beat someone who doesn’t give up eh??
Ps allan seems to be a positive and inspiring force here? Where have u gone @allan
Hi & welcome this is a good place to VENT!! it helps me clear out the clutter that bogs down my thinker & every body prays for everybody else blessings Mary
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Secondary Progressive MS
Struggling with speech
It's been a long time...
Trying to stay positive with hand issues
