Parkinson’s disease advocacy is not always easy… in fact, some days it is so damn hard.
I truly advocate 24/7. Why? Because I am still heartbroken after losing my mother and best friend, Sharon. So many of the beautiful memories before Parkinson’s are still clouded by the final years, when she fought and fought, but ultimately lost her battle. A piece of me left this world when we lost her too.
There are nights I still cannot sleep. Nights where I think about calling her. Nights where I wish she could have seen her grandchildren grow up and shared so many more memories with our family. Those moments were taken from us because of Parkinson’s disease.
I advocate 24/7 because I never want another family to experience what my mother did, what our family has endured, and what continues to replay in my mind every single day. I carry the memories of what Parkinson’s did to my mom, to me, and to all of us who loved her.
I try every day to reach people outside of the Parkinson’s community because I truly believe we need the entire world in this fight. Sometimes it feels frustrating. I sit and wonder why more people are not aware, why so many remain silent, and why this disease is still not talked about enough when diagnoses continue to rise at such an alarming rate.
Why aren’t more media outlets covering it? Why aren’t more politicians speaking about it? Why are we still fighting so hard just to be heard?
Thankfully, I continue to be inspired by this incredible community. Honestly, I do not know how I would get through many days without the friends and extended family I have met around the world through advocacy. You remind me that this fight matters and that none of us are alone.
But I still struggle with feeling like I am not reaching enough people. I will never stop advocating, never stop fighting, but I constantly ask myself: what more can I do? How do we help the world truly see Parkinson’s disease? How do we get more people involved in advocacy, legislation, awareness, research, and support for families battling this disease?
Just because someone has not been diagnosed, is not a caregiver, or has lost someone they love to Parkinson’s does not mean this fight should not matter to them. Parkinson’s affects all of us. Awareness matters. Research matters. Action matters.
Please reach out to one person today who may not know about Parkinson’s disease. If every one of us educated just one more person, together we really could change the world.
I will keep advocating because Parkinson’s does not take a break. My only fear is that advocacy cannot keep pace with the growing number of diagnoses unless we find a way to reach more people every single day.
I hope I can count you in by my side in this fight. Together, let’s work toward ending Parkinson’s disease so future generations never have to endure this battle again.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. http://www.togetherforsharon.com
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