Thursday 19 April 2012

Our Family/Our Computer - We Innovate!

Yesterday I wrote about how Facebook can make lonely people lonelier.  But what is the flip side of all this doom and gloom about social media and how can these online tools help people who give or receive care?  Does social media contribute to my wellbeing?

The resounding answer to the last question is Yes!  I am part of a generation that can well remember life before the internet.  In the old days, I subscribed to a magazine called "Exceptional Parent".  On the first pages was a letter column where people would write in about their son or daughter's mysterious symptoms or undiagnosed condition.  Parents like me would devour those letters, scanning for recognition or familiarity that would make us feel less alone.  It was the first bulletin board about children like Nicholas where I would discover the power and comfort of shared experience.

Now, I use Facebook, Twitter, LinkedIn, Blogger, GooglePlus, Pinterest, and email - just to name a few information sharing tools.  I blog and automatically share each entry on Facebook and a host of other linking sites.  I copy and paste my blog entries to neurology websites such as Braintalk Communities and Disabled World.  Braintalk is an old friend and there, in the Child Neurology Forum, everyone knows that Nick had a chest infection last week and that the antibiotics upset his stomach, just as I know about the daily challenges faced by their children.  Facebook allows me to think out loud about my everyday life, but also to share my more political thoughts about caregiving in the 21st century.  Each of these social media sites has a slightly different role to play.  I feel comfortable with Facebook because it allows me to share both personal and political ideas and experiences.  On my home page, you will find links to the new Victoria and Albert Museum ballgown exhibition, but also a personal note of concern to a friend in Iowa who's daughter is ill with the complications of a genetic disorder.

All these tools enrich my life, but do they actually help me and my family in the wellbeing department?  Well, maybe not in a clinical sense, but there IS one social media tool that is essential to Nick's health and social care.  It's called Tyze.  Tyze is an online social media platform that is completely private - it even has a vault to securely store sensitive medical documents.  It's a kind of highly specialized version of Facebook, but with a purpose of serving a vulnerable person at its centre.  The most unique aspect of Tyze is that it bridges formal supports (doctors, therapists) with informal supports (family, close friends).  On Nicholas' Tyze site, we organize his schedule of appointments and ensure that they don't conflict with important sports events in his life.  His GP can correspond with his nurses or me about side effects of a new anti-seizure medication.  When Jim and I took a holiday to the Bahamas a few months ago, we checked Tyze every day to for a glimpse into Nick's medical profile as well as his leisure activities.  Last year, Nick posted his Christmas wish-list on Tyze and family or friends 'claimed' gifts to ensure that no duplicate presents were purchased.  We use Tyze as a tool to coordinate medical care, but many others Tyze users employ it to help their vulnerable relative to be more involved in their community, either through social clubs, churches or informal visits.  Therapeutic goals can be monitored, tasks assigned, schedules made and information shared with loved ones and professionals alike.  Tyze is a Godsend for anyone giving or receiving care and that's a fact.

Social media sites are tools.  Ultimately, they are in someone's hand and how they are wielded will depend entirely on the individual.  I am fascinated by the possibilities information technology has to open our communications with people near and far.  I pay attention to my online friends and work at my relationships with them.  Very rarely do I lazily click 'like' on their post when I can make a thoughtful comment.  My internet friends ARE my real friends.  For me, I look forward to more, not less, innovation in allowing me to communicate with people I care about.  I have managed to create a safe, caring neighbourhood in my online communities because I work at it.  I guess I am just one of those people who is not lonely online or off - I'm happy and I'm grateful for my laptop.

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