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“Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies. Sites like PatientsLikeMe, Facebook and other ALS sites allow me to discuss issues, share experiences, research new treatment options and keep up to date on the latest research.”
– ALS Patient Susan Speranza
This summer, the Mayo Clinic Center for Social Media sponsored an essay contest for patients and caregivers focused on how they use social media. The prize? A scholarship to attend the Social Media Summit, held October 15-19, 2012, in Rochester, Minnesota.
36 essays were submitted, more than 11,000 votes were tallied, and ultimately three scholarship recipients were chosen. While PatientsLikeMe member Susan Speranza (Susan702) was not among the finalists, we wanted to spotlight her inspiring essay about how social media has become an invaluable part of her life since her diagnosis with ALS (Lou Gehrig’s disease) in July 2011.
Here’s an excerpt describing the aftermath of her diagnosis:
“Last year I was given this diagnosis at the age of 47. I was living a busy, wonderful life with my husband and two children, working as a Physician Assistant (PA) and had just started a PhD program in Public Health. Of course when I went to the neurologist’s office that morning, I already knew it could be nothing else: The Dreaded Disease! After spending the last 20 years practicing medicine and several weeks feverishly searching every website I could find looking for a benign cause, I knew it could be no other. My life came to a screeching halt on that day and I spent the next few weeks isolated, depressed, hopeless, wondering ‘Why Me?” and worrying about the tremendous burden I had just imposed on my family. I desperately needed to adjust my ‘new life’ to this ‘new reality’. Fortunately, social media helped with that adjustment.”
Read Susan’s full essay here and follow this budding ALS advocate on PatientsLikeMe and Twitter.
Want to connect with and learn from others with ALS?
Join PatientsLikeMe Now! (It’s free)
i am a 63 year old female i was diagnosed with ALS a little over 2 years ago it was like i got hit with a train. i am a mom of 3 and grandma of 11. i had a very full and active life..about 18 months ago i was moved to a nursing home..every day i wake up i wonder what i will be able to do and i cant..my legs quit on me about a yr age.
I was just diagnosed with fibromyalgia in july after many years with migrains, fatigue, back pains, plus other unexplained pains here and there…at the time my doctor kept telling me it sometimes is all in your mind…..I mentioned that my grandmother was diagnosed with als and was bed ridden for over 10 years before passing , I was just concerned that I may not have als but I may have something that is similar or in the jeans that may have passed over…again the doctors with many expensive testings came back with nothing follows…I think the doctors(physicians,internist,etc) should try as much to be knowledgeable to the point as to make the judgement to refer sooner than later…I’ve been feeling a lot of pain gradually for the past 10 it didn’t have to take them this long to be diagnosed…I don’t even know what to make of it…