Thursday, 14 February 2013

Nellie Bindara McNamara

Mc in happier days
Some people give up their lives to PWS, it takes over, overwhelms, overpowers and overcomes their lives.  I know a little old lady called Nellie Bindara McNamara ("call me 'Mc', I only answer to 'Mc'") who devoted her life to her son with PWS, but who has now succumbed to old age and dementia.  I spoke to her today, but she didn't know me. Until now, I'd had weekly, if not daily, correspondence from her.  In the 'old days' before computers, she would write me pages and pages about PWS and about her son and what she wanted for him and how difficult it was to get the help she needed.  Somehow she thought I could help, but all I could do was to listen and express sympathy, empathy and encouragement.

She was always a feisty lady.  She never, ever, ever took 'no' for an answer.  She fought for what she perceived as her son's rights, taking her issues to the Government authorities, newspapers and to every PW conference she could get to.  To be honest, she would drive many of us up the wall as she demanded to be heard.  I don't ever remember her sitting silently for long!  But it's the squeaky wheel that eventually gets the oil and after many years of fighting the system, she eventually found a placement for her son that proved that such places could (and should) be found.

I remember one of the most pertinent talks she ever gave.  It was at one of the early Australasian PW conferences in Adelaide which included a particular demonstration that has never left my mind.  She was describing how she took over the management of her son's diet.  Having described how she "fed him little and often" as many as 7 mini-meals a day, she then held up a pair of his underpants and disappeared from view.  They were enormous.  Then, folding them up like a sail, she held up a pair of normal sized Jockeys (underpants) and said, "this is what he wears today."  It was a stroke of genius and the audience was spellbound.  (Only in Australia, I thought quietly to myself!!)

When she was younger,  Mc travelled every inch of the Outback in Australia that she could, befriending Aboriginal tribes as she went.  She was soon well-known as she beetled along in her little blue Humber car.  She loved these people, she loved her land and was fiercely and proudly, Australian, wearing her green and gold tracksuit as often as she could.

After I hadn't heard from her for a few weeks, I started to worry.  My emails to her bounced back with "no such address known" and her phone stayed unanswered.  I worried about her as she has no family - her husband was killed in a shocking accident months before their only child, a son with PWS, was born.  (She raised him virtually single handed in the days when information was not easy to come by.)  Fortunately, though, she has a wonderfully dedicated family who have taken her to their hearts and it was through them that I was able to track Mc down today. She is in hospital care.  She once said to me, "if I kick me clogs off (die) before you, would you remember me at your meetings?"  Well, she's still wearing her clogs, and may do so for many years yet to come as she quietly succumbs to dementia, and I hope for her sake that she remembers only the good things, and that she knows her son is happy in the residential care where he now lives, and that her little dog, her faithful "Tup" is also living there too.

The world has plenty of room for fighters like Nellie Bindara McNamara, known affectionately as "Mc". 

Son, Jan-Erick, and Tup