Friday, October 12, 2012

Multiple Sclerosis caregiver Social Media

Social media is a curious phrase. Before smart phones strangers might acknowledge us seeing us out and about; though most people pretend others with disabilities are invisible. Now with most people walking around in a trance hypnotized by their smart phones, iPads, kindles, or whatever more people actually walk into Patti in her wheel chair than ever before. Sooo … while they are sprawled across Patti’s lap or nursing their bruised shins are they engaging in ‘social media’?

Trends and technology aside there is one thing about Multiple Sclerosis caregiving that is as old as time, the feeling of isolation and loneliness.

I still remember the moment when I first discovered there was some like me out there 20+ years ago in a hidden mysterious world behind a plastic monitor on a AST personal computer with 2 MB RAM on something called a Prodigy Network ‘bulletin board’, pre-AOL and the dawn of internet service provider days.

Now over two decades later cyber enthusiasts tell me that sharing our story is “part of the social media of patient advocacy”. ‘Caregivingly Yours’ has even been ‘pinned’ on Pinterest, whatever that means.

Google analytics reports that Caregivingly Yours was viewed in just the past 12 months in 115 nations and read in 94 languages.
Caregivingly Yours, MS Caregiver views October 2011 - October 2012
Caregivingly Yours, MS Caregiver
views October 2011 - October 2012
Whatever ‘youngens’ want to label it today, one thing has never changed it remains one person sitting down sharing our story with this mysterious world behind the plastic monitor about caregiving for severe MS so that somewhere, somehow when someone else begins their journey with MS progression they can discover that they are not alone.

As the writer of our story, yes the number of nations and languages is humbling. However it is frustrating that the smart phone generation seems to not get that all the ‘apps’ on the planet cannot change one single Depend. MS caregiving has taken, takes and will always take 'two hands'.

IMHO, better than improving ‘social media and medicine’ would be to energize 'social media and cures' and have less challenges to talk about … now that would be a wonderful world. 

I hear babies cry...... I watch them grow
They'll learn much more.....than I'll never know
And I think to myself .....what a wonderful world
“What A Wonderful World” by Bob Thiele & George David Weiss

Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. I can hear Old Satchmo singing it! "Oh, yeahhh..."
    You're right, Patrick -- this younger generation is so caught up in "social networking," that they forget how to socialize and network in the real world -- where they're needed! I also realized that there are so many caregivers (my husband is one) who eschew computers and only have real people with whom to commiserate. (I hate being the subject of their discussions, though!)

    1. Muff, interesting observation about your husband. In our story Patti progressed so rapidly and I was simultaneously basically single parenting our then toddler daughter that I had NO ONE in the real world to relate to. We went from double income couple to kind of isolated. I never had anyone to talk about caregiving with because Patti's progression was not gradual but more over the cliff.


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