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-   -   A Blast from the Past (https://www.neurotalk.org/the-stumble-inn/248900-blast-past.html)

msbluis 08-20-2017 07:58 PM

A Blast from the Past
 
Hello everyone. I'm MsBluIs and I've been MIA for a while, but I thought I'd check in.
I moved to a care home in July, 2014. They never should have accepted me. No one at all knew how to use a patient lift, which I've required for many years. So I trained THEM how to use it.
February 2016, I came back home and I've been here since then.
An update on me: I'm 63 now. Had MS symptoms since 1992 but didn't see a doc about it until '95 when an idiot neuro dx'd me as RR. But I never ever had a remission, just continuous progression.
I changed neuros and he changed my dx to PP after my having gone through 8 years of Betaseron, then Copaxone shots, Novantrone (aka Mitozantrone) for a year and 30% loss of my hair.
So I'm PP for 25 years. Quadraplegic, bed-bound, supra-pubic catheter, Permobil C300, Hoyer Lift, adapted van, etc etc.
Anyway, my right arm still "works" well enough to eat and drink, although even it may be gone in another year.
The bright spot for me is that I'll be fitted for a sleek Permobil F5 Corpus next month. It's much less bulky & it can make me STAND!!

Starznight 08-21-2017 08:29 AM

Congrats on the new equipment! I've seen those sort of wheelchair/bionics crosses before and they look sooooo cool, not to mention all the increased benefits one gains just from being able to achieve a standing position, I sincerely hope they become the new norm for folks lacking such abilities, they help to alleviated bedsores, improve digestion and the subsequent bowel movements, and improved lung function, not to mention you get to be tall again, not simply staring at the world's hip level :D. Have fun!!!

agate 08-26-2017 12:16 PM

I'm sorry you've been having such a rough time.

Is Ocrevus a possibility for you?

It's always good news when someone is refusing to be defeated, and you're definitely someone who's still in there fighting. Congratulations on the new mobility aid. If it's this, it looks really impressive:

F5 Corpus - Permobil

Debbie D 08-31-2017 07:26 AM

Thanks for checking in...wish the docs would come up with a more definitive way to dx MS patients.

Sounds like this new piece of equipment may add to the quality of life...keep us up to date, please!


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