MESSAGE FROM THE EXECUTIVE DIRECTOR (JULY 2025)

We are days away from our national celebration of Independence and, as I’m wont to do, I’ve been dwelling on the meaning of that word. 

Webster defines independence as “not dependent,” more specifically “not subject to control by others,” “not requiring or relying on something or someone else,” or “the state of being free.” It’s a fundamental ideal in our country – taught at an early age, and celebrated with fireworks, flags, and patriotic fanfare. 

But for those living with chronic neurodegenerative conditions like Parkinson’s, the word takes on a more complex meaning. The freedoms we take for granted – our capacity to move easily, control our limbs, even speak, blink, and swallow – become daily battles or experiments. We may lose our capacity to drive – another freedom that we won as teenagers at the very beginning of our forays into life and adulthood. Living independently becomes a family discussion, and often a team sport. 

Independence, in the context of Parkinson’s, is not a fixed state but a moving target. Symptoms may fluctuate from day to day or even hour to hour. Within those fluctuations, it’s important to pursue and preserve independence through strength training, conditioning, and just plain grit. But it’s equally important to accept help – be it hiking poles or a walker to improve balance, professional caregivers to assist you in safely bathing, or outside resources to improve quality of life. I often talk about the importance of preventing a fall or a hospital stay – any assistance you get towards that purpose is also a form of independence.

For care partners and loved ones, independence means honoring the autonomy of someone living with Parkinson’s while working to ensure safety and dignity. It’s a delicate balance for everyone living with Parkinson’s; one that requires deep reserves of patience, compassion, and grace. 

In case it’s not clear by now, independence takes work. It is something we fight to protect by educating ourselves, exercising our bodies, pursuing creative solutions, and wrestling with our own prejudices and insecurities. 

Pay attention to that last word – insecurity. And I used another important word earlier – control. Sometimes we confuse independence for a die-hard self-reliance. I’ll get through this the way I always have: alone. Sometimes we deny ourselves and our family members critical support because we associate “help” with “surrender.” 

By the way, I fall victim to the independence trap, too.  More often than not, “I can do it myself” turns into “I have too much to do.” But freedom is a team sport, and independence is definitely a community project. Together, let’s use this Independence Day as an opportunity to reset our perspective. Perhaps we can even learn to embrace the freedoms born out of surrender.

At Parkinson’s Resource Organization, we understand that true independence doesn’t mean doing everything alone. It means having the resources, the relationships, and the reassurance to live life on your terms, with as much agency and quality of life as possible. That’s why we work tirelessly to build a network of support—through our support groups, resource directory, webinars, publications, advocacy efforts, and one-on-one coaching.

We know that independence is not just about physical capability—it’s about emotional and mental resilience. It’s about preserving a sense of identity and purpose, even as the ground shifts. As we light sparklers this Fourth of July and celebrate the freedoms we hold dear, let us also celebrate the quiet, everyday victories of independence within our Parkinson’s community. And let’s recommit ourselves to ensuring that no one on this journey ever feels alone.

Now read on for TIPS FOR TRAVELING WITH PARKINSON’S – PLAN AHEAD FOR SUCCESS!, along with SUBTLE CHANGE TO VISION THAT IS AN 'EARLY WARNING SIGN' OF PARKINSON'S - EXPERTS SAY NEVER IGNORE IT, THESE FOODS INCREASE YOUR ODDS OF EARLY PARKINSON’S SYMPTOMS: STUDY, HOW TO PROVIDE LONG-DISTANCE CAREGIVING, DID YOU KNOW? BENADRYL AND PARKINSON’S, and MEET THE PRO TEAM.

ALWAYS remember to CELEBRATE YOU and LEAD WITH LOVE.    

Eileen