Friday, July 27, 2012

Multiple Sclerosis comparing apples to oranges

Reading about or hearing about others with Multiple Sclerosis may be best described as comparing apples to oranges. The diversity of symptoms and progression is that dramatic.

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.

still life painting of apples and oranges by Paul Cézanne a French artist and Post-Impressionist painter (1839–1906)
MS progression is no more predictable than it is standardized. With the diversity of MS symptoms and varying progression and equally important the range in abilities and resources of MS caregivers, I can only hope that those new to Multiple Sclerosis and/or MS caregiving never make the mistake of faulting an apple for not being a good orange.

by Patrick Leer
Caregivingly Yours, MS Caregiver @

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  1. 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.
    He 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.

  2. 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


  3. 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?

  4. 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.


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