You almost never hear anyone in the Parkinson’s community say that you will die from this disease. In fact, the rally cry is, “I won’t die of Parkinson’s, I’ll die with Parkinson’s.” This is a powerfully positive message that is absolutely critical to those in the earlier stages of the disease, and I applaud all those who fight the good fight. I pray that it is true for them even though it stabs me in the heart every time I hear it.
You see, there is another side to the Parkinson’s story. The Ugly Truth that is silenced…both by those who mean well and chide you about not being negative, as well as those of us that self-censor. We don’t want our early onset friends to get discouraged. We don’t want people to think we’re negative. We don’t want to acknowledge the truth…people DO die of Parkinson’s. We are the caregivers for those with Avanced Parkinson’s. We have a front row seat to the end game. The ugly truth about how Parkinson’s slowly takes your life slaps us in the face every day. So we keep this truth to ourselves. We cry together in secret Advanced Parkinson’s Caregiver support groups. We hide our Parkies away to protect what is left of their dignity. We don’t talk to the rest of the Parkinsons’ community about being unable to walk, bedridden, unable to feed yourself, bathe yourself, toilet by yourself, or even remember yourself.
I believe that someday we will identify many types of Parkinson’s disease, each with it’s own progression. Until then, we’re all lumped in to one shaky bucket and ALL our voices are needed at the table. Only by telling the whole story, including both ends of the disease spectrum, will we truly raise awareness of this disease.
I’ve wanted to post this for a long time now. I know that I will get a lot of flack from the early onset community. Know that I love all of you. I will fight with you, and for you, until the day we find a cure. To my fellow Advanced PD Caregivers, you are not alone. It’s time to tell our story.