A large *boom* sound reverberates through the house. My heart immediately drops to my stomach. I run downstairs and I hear her cry. My mom has fallen- again. My dad stands there, upset at himself, and shaking his head as he was just outside the room.
It’s a progressive disease and it’s becoming more routine.
Unfortunately this is not a scene I see a few times a year. And that feeling of my heart dropping has actually gotten worse.
My mother sits on the floor, trying to re-adjust her legs so she can stand up properly. She pleads ‘No, no, no,” as I reach from under her armpits and lift her up. She wants to just rush back to what she was doing before. But I look her in the eyes and I give her a huge embrace. And the way she clings on to me, it breaks my heart ever more.
I try to tell her to sit down so we can orientate how this all happened. My dad and I ask, “Where did you fall”, “What were your feet like”, “Were you holding on to something?” Like these questions even matter. My mom has no clue what happened. She became unbalanced, she blacked out and she fell onto the floor.
Those are the facts. And the fact is, we can’t do anything about it.
And that’s the most unsettling part: when the people who you love are suffering and you can do absolutely nothing about it. Ok, that’s not totally true. There are many things I can do. But I can’t cure her disease, and that’s what breaks my heart the most. I can’t cure my mother and bring her back to her old self.
I long for the day my mom tells me she’s not dizzy anymore. I long for the moment I don’t have to tell my mother to speak up when she’s whispering without noticing. I long for hearing my mothers laugh, her real laugh, not the laugh her body dispels in an emotional confusion when she feels sad.
What I really long for here and now is for you to help me bring awareness to this disease. I long for your help in raising the funds necessary for appropriate research about this disease that has crippled my mother and so many other lives.
The disease is called PSP- Progressive Supranuclear Palsy.
It’s a rare degenerative brain disease which only about 3-6 in every 100,000 people have. This makes it much less common and much less researched than Parkinson’s disease. PSP impacts balance, eye control, speech, and cognitive abilities.
Three years ago my mom was diagnosed.
I remember receiving the text message from her: “I have PSP. It’s a brain disease.” It was the same heart drop I get nowadays. I was in Indonesia traveling when I received the text. Then I spent time in Thailand teaching before I came home. I wanted anything to pretend it wasn’t happening. To pretend she wasn’t sick. And, truthfully, it was much easier to deal with from abroad.
But now I live at home for the majority of the year. It’s a necessity. And I’ve taken the role as caregiver to my mother. So many times I curse the world for how messed up it is. I shouldn’t have to dress my mother. I shouldn’t have to help her down the stairs. But the cursing doesn’t help. And the whole ‘woe is me’ routine is wasteful.
Now, I’ve got something I can do. I can share my story. I can raise awareness about PSP. I can beg you to please help donate to this cause. Please, let’s cure this disease. And let’s heal so many lives for the future.
Please, I beg you.
Here is a link to donate to the CurePSP Awareness Walk on March 18th in Marco Island, Florida. Please come join me and my family as we walk in support of my mother. If you can’t join us, please consider donating to this very important cause.
Donations Instructions:
· Click the green register button
· Select individual
· Select amount to donate, and select checkout
· Type in your information
· Under “Other Information” please note Donating in Honor of Mrs. Luce
