Wednesday
pulling into Patti’s care facility to pick her up for a dinner outing, I notice
her parent’s car leaving the parking lot. In just the minutes it takes to walk into her room and greet her I
ask, “Who were you just visiting with?”
Patti: “My
hubby I think.”
Me: “Then
who are you visiting with now?”
Patti:
(laughs) “I don’t know my memory sucks.”
And so
does her visual impairment as I am standing right in front of her wheelchair.
Multiple Sclerosis – it never gets any easier to understand.
Earlier that
day I had read on a Facebook friend’s wall an anniversary wish:
♥ Happy
25th Anniversary!!! I love you! ♥
Except
it was not a typical wish, it was from one spouse with MS (and a similar EDSS >8.5
scale score to Patti) to their caregiver spouse.
How can
this be? Progressions of Patti’s MS physical and cognitive symptoms have
prevented her from ever using the Internet, email, or social media. By the
early 1990’s Patti’s MS speech and memory issues absolutely confounded the
earliest voice programs.
Where
the technology age has empowered many caregivers and extended homecare by
enabling communication it has isolated Patti because of her MS symptoms. Patti
can no longer even successfully use a telephone.
by Patrick Leer
BLOGS:
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Oh for sure they are all affected differently. My husband can't even use his arms or hands well enough to feed himself. He can BARELY manage (w/a grip attached to his hand and a special pointer/pencil eraser) to mouse a trackball. But he is cognitively mostly fine. Short term memory issues. Conversations can be, um, odd. But he knows who what when where and why, so to speak.
ReplyDeleteHe can't do ANYTHING for himself. He has a catheter because the bladder, um, stopped working. He has a "bowel program" because otherwise it stops up. He can't scratch his nose. He needs a BiPap at night to help him breathe. But he can see (read kindle on computer) and hear and talk. Every single person gets hit differently don't they?
Did you read those "statistics" too? 75% of MS patients NEVER need a wheelchair? I hate those stats now.
Rebecca
It is kind of like autism, you have such a wide variety of abilities within that diagnosis; I guess the same thing could be considered of multiple sclerosis? One size definitely does not fit all I do believe
ReplyDeletebetty
I wonder how many more MSers are out there like Patti. You've become her voice, but what about all those who don't have a loving caregiver such as you? What do we know about them?
ReplyDeletePeace,
Muff
Muffie, you raise an excellent point. Where do the most progressive cases of MS go? Unless a caregiver speaks up they go into silence. And as Rebecca points out in her comment, statistics become skewed to the vocal to those seen.
ReplyDelete