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.
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
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Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
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