7 Things That Really Bother Me About Life With Parkinson’s

Parkinson’s disease (PD) is a tough life and not to be taken lightly. With all the serious aspects of PD that manifest in our lives and the effort needed to manage them, it’s hard to find time to be light and playful.

With tongue in cheek, following is a list of what irks me about this chronic illness.

First, what really bothers me is waking up every day feeling sick. There’s never a break. Unlike the common cold, there’s not a starting point, a descent into illness, and then crawling out of the mire and into a recovery state of not feeling sick.

I guess that’s what puts the chronic in chronic illness. It’s always there.

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At the top of my wish list is one day a week of respite from PD. It would be so nice to have just one day to wake up and feel good. Just a short break from having to focus on PD all the time. Maybe have a normal set of emotions without intense fluctuations.

There is a difference between true respite and escape. Respite is healing. Escape is mostly avoidance. When I was chasing after “feel good” actions, like video games or TV viewing, I was grasping for that chronic illness respite. But I never found it down that path.

I discovered that instead of feeling better, prolonged computer time is a trigger for seizure activity. It may seem counterintuitive, but instead of relieving my PD by grasping, I had to stop and sit with feeling miserable — just the opposite of what I’d been doing all my life.

The second thing that bothers me is when a medical provider says, “You don’t look like you have Parkinson’s.” Several providers (excluding my current neurologist) have said if I don’t have all the cardinal physical symptoms, then I don’t have Parkinson’s.

I thought I’d start wearing a T-shirt that says, “I work darn hard to look this good with Parkinson’s” in bold yellow letters against a black background. Either that or I fully assume the sick role and walk into a provider’s office hunched over like Quasimodo or shuffling like Charlie Chaplin.

Readers writing comments about my columns often identify medical providers who argue against, or deny, patient-reported symptoms. The mismatch between the story the patient needs to tell and the one the provider is looking to hear creates dissonance. As a combat vet and abuse survivor, I suffered very few PTSD-like symptoms until having to deal with this provider dissonance. I have left more than one office wanting to scream at the top of my lungs, “Can you hear me now?” That didn’t help, so I write.

The third thing that bothers me are those little packets of ketchup or mustard that come with burgers and fries. I can never get them open. Whatever sadist designed them wasn’t thinking about an old guy with Parkinson’s. I try to tear the top to separate the plastic, but it doesn’t cooperate. The fingers just don’t grasp and tear as I try to avoid squirting the contents over me and my nearby partner. Now I keep a small paring knife in the glove compartment.

The fourth thing that bothers me are sweatpants with drawstrings. Try moving your hands to unlock the Gordian knot when you can’t properly control your movements and there is a bathroom urgency. Cross-legged, straining not to lose it, I yell for Mrs. Dr. C, who untangles the drawstring just in time.

The fifth thing is stubbing my toe all the time. A doctor could have said, “You’re going to be smashing your toe into lots of things, even a flat floor,” but no one spoke up. I now wear protective footwear.

The sixth thing are the surges, most likely seizures. This invisible symptom, an electrical storm in my head, makes normal living impossible. If you saw me having the seizure, you likely wouldn’t know. I’m thinking of getting a special pin I can wear on my chest. When a seizure is about to happen, I can press the button on the pin and turn on the light that warns, “Hey, folks, brain’s on fire. Step back and give me space to recover.”

The seventh thing that bothers me is the isolation that comes with having a chronic illness. It sounds so cliché to say, “Nobody knows the trouble I’ve seen,” but there it is, no getting around it — so I keep writing.

Please share your list of bothersome things in life with Parkinson’s in the comments.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.