MESSAGE FROM THE EXECUTIVE DIRECTOR -- FEBRUARY 2024Category:
As I sat down to write this, I took some time to reflect on the first month of the year. Does anyone else always expect the New Year to roll in gently? But it never does. This year it raced in, roared in, and left us dizzy in its wake.
Dizzy…but fulfilled. The true highlight of my first month as Executive Director has been the chance to spend more time with YOU, the caregivers, family members, and people with Parkinson’s we work so hard to support. I joined many of you on our Round Table, Partner in Care, and Village meetings this month – including a fantastic session with three members of our Wellness Village to discuss the intricacies of Patient Advocacy. You can catch a clip of that meeting on your YouTube Channel.
I met a number of new constituents who are just beginning to tackle their journey with Parkinson’s and take control of their diagnoses. Congratulations and welcome.
On a more sobering note, we have received a huge volume of calls from people across the country looking for financial assistance paying for their medications. Paying for care is a topic that comes up frequently – it’s a point of agony for many of us. And when a medication assistance fund runs out of money (which is what happened this month), hundreds or thousands of families are left in the lurch, sometimes with co-pays of $1,500, $1800, or $2,000 per month for a single medication.
The economic burden of Parkinson’s Disease is roughly 52 billion PER YEAR. As medication prices, co-pays, and insurance premiums rise faster than retirement incomes, this is a problem that will only worsen without significant intervention.
So what’s the solution? There’s no easy answer. Right now, to quote Jo, “it takes a village.” As a resource organization, PRO is able to direct people to a variety of assistance funds. We can connect you with financial advisors and insurance professionals. We can alleviate the emotional burden through support groups, the physical burden through exercise groups, and the solitude through our mission – working so no one is isolated because of Parkinson’s.
I can’t help but think about a comment Jo made in her final message – that human service organizations like ours scrabble for pennies while billions of dollars pour into research for an as-yet-unrealized cure. A true village takes care of its own – the Parkinson’s village must invest equally in services for people in the here and now as well as a future cure.
These are sobering thoughts, but they’re galvanizing thoughts as well – PRO serves a vital role in the complex web of Parkinson’s support services. In fact, what we do best is connecting all the pieces. Here’s to another month and another year of connecting the pieces together.
Read on for LEGISLATION TO FIGHT PARKINSON’S PASSES HOUSE, NAMED IN VIRGINIA CONGRESSWOMAN WEXTON’S HONOR, NANOPLASTICS WORSEN PARKINSON’S SIGNS IN WORMS, HUMAN NERVE CELLS, USC RESEARCH TEAM COMPLETES PILOT STUDY ON PARKINSON’S DISEASE, ACTIVE BODIES NEED ACTIVE MINDS, JO ROSEN TO FACILITATE HANDFUL OF SUPPORT GROUPS THROUGHOUT THE SPRING, A VERY SPECIAL DONATION, GAME NIGHT WITH LLOYD, YOGURT COVERED STRAWBERRIES FOR VALENTINE’S DAY, and DON’T FORGET TO LAUGH.
Until next month, REMEMBER Groundhog Day on February 2nd, Valentine’s Day on February 14th, and President’s Day on February 19th. The flower is the Violet and the birthstone is Amethyst.
ALWAYS remember to CELEBRATE YOU and LEAD WITH LOVE.