Off to see the Wizard

One of those days

It was one of those days when my body turned on me, taking on a life of its own and refusing to follow directions from my brain. I had just had a massage and was getting dressed when my arms refused to reach that extra inch I needed to hook the two ends together behind my back. I tried hooking it in front and then turning it around, but time was not on my side.

Frustrated and angry, I slipped my bra on without hooking it and quickly pulled my tee shirt over it, hoping it would hold the bra in place at least until I walked to my car. Wearing socks seemed insignificant at this point, so rather than struggle to put them on, I stuffed the socks into my purse and jammed my naked feet into my sneakers.

As I exited the room, my therapist asked, “Do you know your shirt is on backwards?”

“Of course I do,” I answered. “It’s a new fashion trend among people with Parkinson’s.” Humor is my weapon of choice in my daily battle with this relentless disease.

On my drive home, I seriously considered changing my GPS destination and heading off down the yellow brick road to see the wizard. I fantasized about convincing the powerful Oz to give me the brain he didn’t give the scarecrow, but I knew this wasn’t going to happen. He was, after all, one of the early charlatans in regenerative medicine.

Top 10 things I hate about living With PD

1. Feeling “much older” than I am, as every task takes at least twice the time it used to take.
2. Having a noticeable tremor that worsens at the most inopportune times, like when I’m going through airport security or addressing a crowd.
3. Needing help with every day activities like putting on socks and shoes, and jewelry.
4. Looking to strangers like I need assistance. A woman 15-plus years my senior and walking with a cane extended her arm to help me down from a high curb.

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5. Ordering food in restaurants based not on what I have a taste for, but rather on what I am least likely to end up wearing.
6. Always feeling hot, so hot that I rarely wear a jacket, even in Chicago winters.
7. Being unable to walk the whole mall without multiple rest stops. This is doubly frustrating, as shopping has always been my “pick me up” sport.
8. Fumbling for change with a line of people behind me.
9. Enduring the pain of toe curling (dystonia), and the itchy, burning sensation in my feet.
10. Knowing what the “end stage” is like and exhausting myself trying to outrun my fears.