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.

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…” 
Proverbs 31:8

by Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. There are times when I wonder where many of these MS bloggers have gone. Like you, I question if they've just deteriorated so much that they can no longer communicate via their blogs, or have they gotten bored with it, or have they found other means of networking, or have they (ok, I'll say it) died?
    I have a post planned for this week about a woman somewhat like Patti. However, she doesn't have someone like you to tell her story.

    1. Yes Muff or the unspoken - they died. Yet between neurologists and MS organizations aren't we are all told MS is not a fatal diagnosis? Then again we have been told a lot of things over the quarter century since Patti was diagnosed. I still remember MS fundraising for a 'cure' back before Big Pharma debuted with Betaseron.

    2. This is also common with blogs in general, Patrick. Sometimes when I have time, I'll click on the "Next Blog" feature on Blogger to see what I get and then continue to do that for a period of time. It is amazing how many blogs haven't been updated in a few years that are still left on cyberspace. It does make you wonder about it all, but I'm sure in the case of MS, there are those "variables" with why someone hasn't updated. You did bring up a good point for caregivers to perhaps notify, even if it is just for closure to let others know what is going on, even sadly if it is bad news with a passing or a progression in MS.


    3. Hi Betty! Good points and likely some have simply evolved to Facebook and Twitter especially with smart phones representing 50% of how people access the Internet now days the truncated text limits appeal to the smaller screens. ... but 45% missing in action seems high.

      With my own diagnosis of lung cancer earlier this year I have noticed much of what you mention in the lung cancer blogging community of caregivers and family adding a final entry while leaving the blog on line but then that is the norm when lung cancer only has a 15% survival rate whereas MS is not a fatal disease.


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