MITCH STURGEON
Author and Blogger Living With MS
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I receive a steady stream of MS news items. Unfortunately, almost none of it applies to me. I do have MS, just not that type of MS. I am the Titanic passenger, wandering the sinking ship as if in purgatory, always being told, “This lifeboat is not for you. Go find another.”
Click here to read the rest of my essay at multiplesclerosis.net.
11 Replies to “Not My Type of MS”
Thanks for your post. I’m happy you are able to.
__Hans
Hans, Thank you so much!
I appreciated the post.
Nailed it with “‘This lifeboat is not for you. Go find another.'”
And that sucks.
I commiserate with you regarding “my personal information is tracked, cataloged, analyzed, bought, and sold by… “. Not a fair bargain.
Glad that you keep writing. Grateful for all you have written to date.
So glad you liked the post. It’s nice to hear from you from time to time.
When we get a cure I’ll dance in the street with you🤸♀️
Rosemary, I will indeed save you a dance!
Good one Mitch
Mitch,
I’m ready to join the dance party, too!
No rrms for me either.
Fortunately, it was a slow progression.
Started @in 1981 at age of 28.
Here I am at 66 – Thank God for scooters – legs don’t work but arms still do (at the moment).
I remember first catching your blog when you were still out and about going hunting,
I believe it was. So many years ago.
I often wonder how Marc, Wheelchair Kamikaze is doing. Haven’t seen much from him in a long time. It’s hard not to worry about one another.
Wishing everyone the best,
Dee /OH
Dee, I’m saving a dance for you! Marc is not doing great, but he’s hanging in there.
SPMS here. MS Since 85′. Like you, I’ve done it all to try to stem the tide. I know people are just trying to be helpful when they tell me how Selma Blair and Jack Osbourne were cured by HSCT, but it still gets exhausting trying to politely educate them that, as you say, that lifeboat will not probably not have any effect unless you are having active attacks. Then, I have to try to explain what the difference is between an active attack and progressive neurodegeneration. It’s still easier to talk to these people than the ones who tell me about how their third cousin, infinity times removed, had a friend who had a friend who gave up Nutrasweet and cured themselves of MS. I still thank them and tell them that I don’t eat Nutrasweet.
Sandra, thanks so much for commenting. You are right — the suggestions come in two categories. There are plausible suggestions, like HSCT, which just don’t work for us, and then there are fairytale solutions like bee sting therapy that just make you shake your head. We should give them all the benefit of the doubt, but I know I would never suggest some outlandish therapy for say, a cancer patient.
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