A Poem for Uncle Petey

Below is a poem that Petey wrote about his uncle, who died Saturday after battling ALS. Even though there are allusions to family connections - karate kid, movies, Stephen Segal - it's easy to follow. One more note - Uncle Petey was the president of the regional CWA for twenty years or so - hence the 'union' references.

Uncle Petey

I remember that grin
Even when the disease loomed
I knew how it must have grown heavy
But his strength was there
I could see it

I regret not seeing enough of a union man
That a President recognized
And a family grew with
Who dressed up like Dumbledor
And quoted Steven Segal
That danced at a daughters wedding
And honored his beliefs

He is a passed titan
Who is still alive through warm hearts that mourn
That celebrate a man still immortal
Telling stories to us in our minds campfire

Petey was the true American dream man
Hit by something deadly
But never stopped swinging

I'm not a religious man
But I know he would say a prayer now
He would be strong with his big heart
And he still is as we know

So Uncle Petey, I know you're listening
And your still grinning in your Dumbledor hat
Saying "Sweep the leg Johnny"
And watching all the best action movies
Starting a union in the afterlife

No strangers in Bangalore: Muscular Dystrophy Conference

Deb Robbins, Parent Project Australia, reports on the first Asian PP Conference in Bangalore, India. I love her down-to-earth, funny, and wise-beyond way of looking at things.

Over 500 delegates attended the First Asian DMD Conference organized by United Parent Projects Muscular Dystrophy, Health Care Global Foundation and NIMHANS at St John’s Auditorium in Bangalore. Parents also came from Iran, Israel, Sri Lanka, Italy, The Netherlands and France. Stakeholders around the world were able to view the lectures via live streaming organized by Duchenne Parent Project Italy. International spectators were able to send chat questions to be answered by the panels along with those from the conference floor.

This was no local seminar but a national conference boasting an international program. Prof Jean-Claude Kaplan, Dr Annemieke Aartsma, Dr Madhuri Hegde, Debby Schrans for Dr Hendriksen, Dr Raghavendra Rao, Dr Lakshmi Raman and Dr Herve Laouenan explained their research. Dr Rao’s reasons for the suspected value of yoga for Duchenne were particularly innovative. Clinicians included Dr Nathalie Goemans from Belgium, Dr Jes Rahbek from Denmark, Dr John Bach, Dr Karim Wahbi and Prof Douglas Biggar. Though only one therapist presented, 160 practitioners attended Helen Posselt’s workshop.

Everywhere was evidence of dedication –the geneticists in Dr Lakshmi’s lab giving up their leisure time for family fun days and disseminating information to doctors surgeries on weekends. And no problem was any trouble for Dr Rao, the local organizer, to solve.

Particularly inspiring were the calls to rally together to abate the progression of Duchenne for one and for all, by Dr Ajaikumar (HCG), Dr Elizabeth Vroom (Conference Convenor & UPPMD President) and Hafiz Issadeen from Sri Lanka. All presenters urged parents everywhere to be proactive in both care and advocacy. With better care and promising research around the corner, it is more important than ever to plan for longer and more comfortable lives for our children than we could have imagined 15 years ago. The Parent Project Muscular Dystrophy group of India was inaugurated at the end of the two day conference and these core parent advocates networked with presenters and UPPMD stakeholders on the last evening.
In Bangalore as at home, I enjoyed swapping practical care tips and the trials and blessings of life with DMD, with other parents. More than one parent asked me to read specific medical information about their child confusing me for one of the doctors. They were desperate for more information though we’d just sat through hours of presentations. Yet the children and youths running, waddling or wheeling around the auditorium were as serene and ‘wise-eyed’ as Australian, European and American boys confirming my own theories about just who is saving who?