Monday, October 22, 2012
Where are the voices of advanced multiple sclerosis?
Progression of my wife’s MS dementia symptoms devastated not only her abilities to direct her own medical care but safely interact in the world around her.
multiple sclerosis caregiving care giving
A crowd of communication impairing symptoms from visual impairment (legally blind) to dysphagia and speech control through physical inabilities has prevented her ever using a PC.
Even a telephone can challenge her not only physically but cognitively.
For over a decade and a half we would hear how ‘rare’ Patti’s MS was … now at least the MS Society and organizations talk about advanced MS, unfortunately most debate nomenclature rather than substance.
We are not hearing from those who can no longer speak for themselves. MS in itself is a rare disease in the US affecting only 1 in 750 people, whereas other dementia related diseases such as Alzheimer's affects 1 in 8 older Americans.
Recently I was reminded of all this while reading some remarks from MS bloggers about Annette Funicello’s progression.
If a writer with Multiple Sclerosis can write then they still have their mind and likely control of enough body function to either type or dictate. … with progression comes increasing dependency and apparently cyber-silence. Unless their caregiver speaks for them, their voice is silenced.
Apparently a significant amount of people with MS disappear, where do they go? Is the MS blogosphere an anthology of unfinished stories? Scanning through a listing of MS blogs reveals that 45% have not been heard from in over 6 months through years or more.
Is this about the increasing isolation of MS home imprisonment? Or is it a factor of the dawn of socialization with the care facility era? Or has someone's MS gone into remission and they want nothing to do with the MS community? Or is Patti’s situation more common and progressing MS symptoms simply prevent communication? … I do not know. I don’t do answers, I do questions.
Yes, it is extra work for caregivers to share but when those we care for can no longer speak for themselves then how can others know both the challenges and victories than can and will lay ahead when people with MS can no longer share themselves their journey of living with MS.
“Speak up for those who cannot speak for themselves…”
by Patrick Leer
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
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