Sitting all alone in her neurologist’s office, my 48-year-old Mom waited, heart pounding, for the news. “You’ve got Parkinson’s,” was all she heard. Three years of an undiagnosed pinky tremor had led her here, so it wasn’t a huge surprise.
Yet still, those three words were so heavy.
Looking back, I feel awful Mom had to take in her diagnosis by herself. A recent divorce had made the moment morewearisome, but as we all know, Parkinson’s disease doesn’t wait for a convenient time to show up.
Nor does PD let you know where it’s going to take you.
For 30 years, Parkinson’s led my Mom and all of us who cared for her down many different paths. I won’t lie and pretend they were all easy.
Without direction or PD know-how in those first several years, the paths were very rocky. There was a lot of confusion about what we should and shouldn’t do.
There were also many frustrating times for us and patience became our number one sought-after virtue.
Yet, with each challenge Mom faced, she learned something new, and by doing so, we did too. (Like the discovery that music could get her out of a freezing episode nine times out of ten.)
And thanks to her genuine faith and determination, Mom’s resilience grew after conquering each mountain.
Slowly but surely, we built a team of professionals, family, and friends around Mom to help her live her best life with Parkinson’s.
For three decades, she pushed on, despite never having the chance to participate in the myriad of PD programs that exist today and never connecting with other people with PD for support.
It amazes me how much Mom had to do on her own, and I wonder how much easier those paths would have been back then had we known as much as we do now.
The thing is, no one should be alone with Parkinson’s. Not in the doctor’s office, not in the early stages, not the mid-stages, and not the end stages. Not if you’re forty-something or eighty-something.
My Mom passed away two years ago, and this Mother’s Day, I’ll get a little teary thinking of her, but what eases my sadness is my work with All About Parkinson’s and PMD Alliance.
I’m blessed to have the opportunity to help others feel less alone on their Parkinson’s journey and connect them to the help and support they need to live their lives to the fullest.
If you or someone you love has been feeling lonely on a Parkinson’s or other movement disorder journey, I encourage you to reach out.
We are here for you.
May you never feel alone,
-Lianna