We were different once. Employed. Strong. Organized. Blithe, even. And then came the tremors. The freezing. The falls. The quiet voice. The loss of a sense of smell. The symptoms as varied as we are.

The CEO, custodian, homemaker, executive director. Teacher. Doctor. Lawyer. Professional actor or athlete or singer. Or comedian. So different once upon a time. Now called to be something new, someone new.

But we mourn who we once were. It’s only natural. The ability to organize and track the progress of teams working on projects worth millions of dollars. To help our children with their homework. To focus on one task long enough to finish it. Just once, again.

To read.

And we wonder.

Where did I go?”’

How did I get here?”

What am I doing?”

How much more do I have to lose?”

Oh, sure, the humor comes back sometimes. The smile comes easier, the light we once carried so strongly within our souls is bright again. But then they fade into little sparks, small candles that can’t overcome the darkness.

Parkinson’s is a disease of limits. Every day we lose a part of what we had the day before.


The sound of my right foot trying to move and stay where I want to put it. I catch sight of myself in the mirror. Stooped. Old. Tiny.

Oh, for the love of Pete! Stand up straight! Take a damn step.” I practically yell at myself.

I force my right leg to take a full step, swing through the hip, and place my foot down. It stays. Then my left leg. Add arms and I am striding down the stairs with Friday. It is 6:05 am, and the battle has begun.

Every day we fight battles – large and small – to keep who we were alive. My mother used to run her finger up our spines and make us sit up straight, regardless of the fact that we were sitting on stools at the kitchen counter. But that is why my posture is so good now. Despite the Parkinson’s stoop.

Shoulders down and back.

Engage your core.

Put your music in your ears and head out for a run. Or a walk. Or just out.

Stretch your mind and heart.

Forgive. Apologize.

Leave nothing undone or unsaid that will make someone feel better.

So when we wonder,

Where did I go?”’

How did I get here?”

What am I doing?”

How much more do I have to lose?”

We can honestly answer.

I was here all along.”

I chose to be here.”

I am living my life as only I can.”

I don’t know, but I will lose nothing without a fight”.

We carry our essence with us. Who we are in the deepest, brightest parts of our souls. No matter what. No matter how long it takes us. We are still strong.


  1. madmollusk says:

    Dear Jane,
    I have been saying goodbye to things I cannot do any longer, and realizing that is OK, I mourn the loss, but know I have the memories, and must move on. I applaud you and all you can still do. Vent anytime. No crappy quotes, that I know you may not like!! I rode my stationary bike today for 10 full minutes. I went out to get fish n chips, and said I’m going in my shorts, I don’t give a tinkers toot what my legs look like!! Tomorrow I start on my August project, decluttering my den. Hugs always Karen

    Liked by 1 person

  2. Kat Hill says:

    Beautiful, poignant and so well stated my friend.


  3. In spite of a diagnosis, a change in crucial chemistry, you are a women, a dancer, a fighter and that is what we see. KB

    “Though you may hold your sword in a shaky hand, I see the Demons you are slaying. Carry on Warrior. You are stronger than you realize. The battle is real”. -Sarah Beth McClure.


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