New Year’s Day is supposed to feel like a beginning.January 1 arrives with confetti and expectations—a collective agreement that we get to start over. My body did not get the memo. Parkinson’s doesn’t pause for fireworks or make resolutions at midnight. It doesn’t care what year it is. It measures time differently—by symptoms, by medication… Read more: My Body Doesn’t Know It’s January

Everyone wants a picture-perfect Hallmark movie Christmas, right? The house decorated inside and out, ready to win the neighborhood light-display prize. Right?But what we conveniently forget are the parts of the movie where the main couple has a dramatic breakup, or Grandma gets rushed to the hospital because she’s winded and everyone fears her heart… Read more: When I Stopped Decorating for Hallmark, and the Holidays Changed

Every morning, I face my own private Olympic event: getting dressed. Take compression socks, for example. Once upon a time, I could just stand, bend, and slip them on. Now, thanks to Parkinson’s and balance issues, that’s no longer the case. Instead, I lay on my back, curled up like a rollie pollie, wrestling with… Read more: Does Getting Dressed Count as Exercise?

There’s nothing like a late-night visit to the ER to make you realize you’ve accumulated quite an extensive inventory of ailments, conditions, and diseases. This time, I went because of a surprise anaphylactic reaction to Penicillin VK. It had been prescribed to knock out whatever was causing my constant sore throat, cough, and laryngitis. I’d… Read more: More Than My Chart

The people in my life are my best medicine, and they are the meaning I can measure my life by.

If you live with Parkinson’s, please hear me: do not take Benadryl.A few days ago, I had a massive, all-over itchiness that drove me crazy. Triple-digit heat had left me with a case of prickly heat, and I couldn’t stop scratching. My scalp itched so badly I tried using dandruff shampoo just for some relief.… Read more: Why I No Longer Keep Benadryl in My Medicine Cabinet

They say laughter is the best medicine—and for the most part, I agree. But like many things in life with Parkinson’s, even something as joyful as laughter can become… complicated. You see, for me, laughter doesn’t always feel like a gentle release. Sometimes it’s more like a rollercoaster that I didn’t mean to get on.… Read more: Laughter, Pies, and the Surprising Power of Silly Faces

We didn’t just grow up together; we were in sync. Our thoughts, our games, even the way we moved through the day—it all felt like a chorus.

So I dance. Not gracefully. Not even with confidence. But I shift my weight back and forth between two emotional poles, caught between caring too much and not caring at all. Some days, it feels like the worst of both worlds.

Dear Friend, You didn’t ask for this. None of us did. But here you are—with a diagnosis that changes everything and nothing at once. And you told me. That matters more than I can say. I know how hard that moment can be—the words sticking in your throat, the fear of how it might land.… Read more: Welcome to the club you never asked to join.

Let’s be honest: using a computer with Parkinson’s is like trying to thread a needle on a rollercoaster. With mittens on. I sit down to write a simple message and somehow end up sending a half-written sentence to my entire contact list. Because my finger twitched. Because the mouse took off like it was on… Read more: I Meant to Click That… Probably: Parkinson’s vs. The Computer

Parkinson’s is a real piece of work. It messes with your body in all the usual ways—tremors, rigidity, slowness, fatigue—but it also has a sneakier, more insidious talent: it steals your nouns. And I don’t mean obscure, once-a-decade trivia-night nouns. I mean everyday, embarrassingly basic words like pit. Yes, pit. I recently tried to talk… Read more: Where the Hell Are My Nouns?

“Annie, where are you?” I call out as I walk through the house. I find her sitting inside a huge shipping box stuffed with pillows. “What are you doing?!” I ask with amusement.She answers me, “Nothing.”  Nothing… that beguiling state of being that seems like it should be relaxing and peaceful, But for a person… Read more: Nothing

Apparently, the non-Parkinson’s part of my brain didn’t get the notice that the Parkinson’s part of my brain isn’t exactly reliable these days. Ideas still pop up before I can stop them—like a reflex, or maybe like a dog spotting a squirrel. The problem is, once I throw out an idea, people assume I’m signing… Read more: “It’s My Own Fault” or “Open Mouth, Insert Foot”

We all know the phrase “pain in the ass” (or butt). It’s usually reserved for those particularly annoying situations or people who just seem to make life a little harder. Well, let me tell you, I’ve taken it to a whole new level. This isn’t just a metaphor—it’s my reality. My glutes have decided they… Read more: When Life Gives You Lemons, Sit Down Carefully: Living with a Literal Pain in the Ass

The question “How are you?” might seem like a casual greeting, but for those of us with Parkinson’s, it’s a bit like being asked to sum up an entire movie plot in one sentence—complicated, unpredictable, and loaded with twists.  When I say “I’m fine” or “okay,” it’s not a complete truth, but it’s also not… Read more: “The Reality Behind ‘How Are You?’—And Why New Year’s Resolutions Are a Little More Complicated With Parkinson’s”

Social gatherings can be challenging when you’re living with Parkinson’s. (AND Fibromyalgia, Autism and similar conditions.) During this busy season of parties and events, I often find myself reflecting on how best to navigate these situations. I wanted to share an open letter I’ve written—something that helps put my experiences into perspective and might resonate… Read more: “Navigating Social Gatherings with Parkinson’s: A Letter to Share Understanding”

The day before yesterday, December 2, would have been my dog Daisy’s 18th birthday. Sadly, she passed away last year, just one day after her 17th birthday—at 3 a.m. on December 4. I had braced myself for a wave of sadness on her birthday. While I did shed some tears, I found myself feeling mostly… Read more: “Grieving our pets: The depth of love and loss”

Thanksgiving is upon us and soon many families and friends will participate in a tradition of announcing what they are thankful for this year. But many people have a hard time with this concept because they have truly had a hard time with their lives lately. Chronic Illness is a tough thing to ignore at… Read more: “Finding Gratitude in the Midst of Chronic Illness: A Thanksgiving Reflection”

In Fall of 2023, I was introduced to the Day One Cinema Therapy writing program (via www.yesandexercize.org). It was a lifesaver, helping me find the strength to save myself. Through the 16 weeks of the class, I focused on a Joseph Campbell-inspired Hero’s Journey to uncover hidden emotions that imprisoned me. By naming my apathy… Read more: “From Apathy to Empathy: Naming Emotions and Reclaiming My Life with ‘Annie'”

Ah, Halloween. The time of year when we’re all supposed to enjoy a “little fright” — but in my case, it’s more like a mini horror marathon, and I’m front and center without any popcorn. With Parkinson’s, my nerves are already strung tighter than a spider’s web, and every “boo” or horror movie jump-scare hits… Read more: “Halloween Spookiness & Parkinson’s: A Horror Show I Didn’t Buy Tickets For”

It’s Fall. In case you need a more literal explanation, this does not mean you should fall!I am really trying to take in stride the fact that I am living with Parkinson’s and that means learning to live with some very annoying and sometimes limiting symptoms. But falling is not one I can laugh off… Read more: “It’s Fall—But I Didn’t Mean to!”

But life, as Benny reminded me with a blank document titled “New Call Book,” doesn’t follow a script. He told me, “Your future isn’t written, and you can’t plan what’s next in a constantly changing life.” Annie concluded, “It’s back to Daisy’s advice. You should live the way Tena is discovering how to live. By just being.”

Yesterday, I became acutely aware of all the tiny, automatic decisions people make daily without a second thought—and how much I struggle with them.

It’s 6:30 PM, there’s a soft knock at my bedroom door, and I see Annie cautiously peering in. She asks if I was able to rest, and I admit that I only managed a little, with too much on my mind. Annie gently reminds me of the 7 PM meeting Benny called. Feeling overwhelmed, I… Read more: “Mirror, Mirror: Finding Resilience and a Poodle Named Ye-Na”

It’s a sunny day and the air is so light and refreshing. I can feel it through the slightly rolled down windows as we cruise down the road headed for home. I’m enjoying the drive because the road is deserted, quiet, and none of my passengers are demanding anything from me.

I need to let go and live one moment at a time, but Parkinson’s Disease (PD) makes that difficult. My interactions with family, friends, and strangers remind me daily of my diminishing emotional filters.

Who am I, and when did I become this person? Did I lose a younger version of myself to become who I am now? Is the process of transitioning from child to adult like a chrysalis emerging as a beautiful butterfly? It’s a comforting metaphor, but far from realistic. No, we stumble through the teenage… Read more: WHO I AM

In the rapture of this moment, I felt Daisy’s thoughts, straight from her heart. She let me know that she was no longer in pain and that she was very peaceful and happy. She also told me that she was there because she had been keeping an eye on me since she died. She wanted to make sure I would be okay. She saw that I was lonely, sad, grieving, anxious and overwhelmed.

I have no filters or barriers to protect my nervous system. I feel like a raw, exposed bundle of nerves most of the time.

Today’s blog post is a Parkinson’s public service announcement. I am really dragging myself through the hours of the past three days of unprecedented triple digit heat where I live. I’m trying to stay hydrated and am not exerting myself but it’s a big, scary struggle to manage how the heat is affecting me. This… Read more: Dealing with extreme heat and Parkinson’s

“I grapple with making choices to the point of shutting down in frustration and great disappointment in myself and anger at PD.”

Happy Father’s Day. I don’t do anything for Father’s Day now. My Dad has been gone for 40 years. My closest Uncles, who were like Dads to me, are all gone too. Face it, I’m getting too old to expect my elders to still be here for me. What?! I’m an elder now?! Oh, myyy.… Read more: Biscuits with Dad

It’s a fast and rickety wooden roller coaster ride of emotions, too. There are days when it feels like I am only an observer watching my mental control, ability to speak sensibly, and my general health slip away. This crisis of my body and mind changing due to PD is stealthy, treacherous and can be swift.  

Parkinson’s disease (PD) has many symptoms. Now in my sixth year of having PD I sometimes look at these symptoms as if they are milestones on a checklist.

Her absence is so deafening to me. It’s unbearable at times. There are no sounds of her sighing in her sleep, and shaking her head so that her ears make a flapping sound. No sound of her little feet creaking the wooden floor as she walked up and down the hallways. No clickety-clack of the toenails on the kitchen linoleum floor.

Having to look so deep into what scares me, and then put it into a story has also brought me revelations. Or are they realizations?

I started thinking about what I would write for this reflection as soon as I turned in my last piece of writing. But whatever thoughts or ideas I had flew out of my mind when my dog, Daisy, died suddenly in the early morning hours of December 4. So this is not a reflection of the past 16 weeks of writing. It is the story of what happened to Daisy so unexpectedly, just one day after her 17th birthday.

I am bringing home a powerful elixir. The elixir is something I made. I discovered this elixir through the writing I have done over the past 3 months.The writing opened up my mind, and my heart. It brought me out of darkness and into the light. My elixir is a new attitude, a new perspective. 

I look out on all of my negative emotions, freely moving about, not clinging to me. I am dumbstruck by this apparent detachment. I look down at Annie. Her eyes look at me with longing. I look back at Kermit and agree to let Annie out and let her go.

When I arrive back home, I want to introduce my family to the rapscallion group of emotions that have been the key disruptors to managing my everyday life. I want my family and friends to know how real and tough they are because they are formidable opponents who will keep on challenging me and knocking me down. 

I am learning that life is bigger than the daily, often menial, work of my life. MY LIFE means more. I have been in a foggy, often dark place and it took Parkinson’s to make me find the light within me. 

I cannot remain complacent about this apathy that’s been putting a grip on me. This enemy seems invisible but I can see her. “Apathetic Annie”! Contrary to her languorous state of being, she is always running ahead of me to set up yet another blockade that keeps me from participating in my own life.

I need to break out of this Parkinson’s prison I’m in. Apathy is my prison matron.

I am struggling daily to get rid of this apathy. Sometimes it feels like I’m just waiting out my time between attacks of this insidious feeling consuming me.

I’m tired of living with chronic illness. It’s way too much work for one person.

The day I heard “you have Parkinson’s” wasn’t a shock to me.

Just before my Parkinson’s (PD) diagnosis the world was in the midst of the COVID crisis. This was a blessing in disguise for me. Sort of.