Having good and bad days can be confusing with Parkinson’s disease
When I feel better, I start wondering if I'm blowing things out of proportion
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Parkinson’s disease can cause a wide variety of symptoms, from losing your sense of smell to having terrible gait issues that result in multiple falls a day. And they don’t happen in any particular order. It’s not like you can say, “OK, now I’m going to tremor for two hours, and then I’ll be done. And later I plan on having balance issues.” It’s more like a constant swirl of variables tugging you from one extreme to another.
One of the most confusing things for me as a person with Parkinson’s disease is that sometimes you’re good, and then you’re not. This roller coaster can mess with your mind and body. You might start doing some magical thinking, telling yourself, “My tremor is better today; maybe my Parkinson’s is, too. Maybe the doctors got it wrong, and this isn’t Parkinson’s, but something else they can cure.” If only that were the case.
It’s also super confusing for those around you. Even if they are empathetic, you can often feel judged or like they don’t believe you, because one minute you’re trembling so much you can’t sit still, and the next, you’re totally calm, cool, and collected. You even start to think those things yourself. You know you’re not faking it, but you wonder if you’re blowing things out of proportion.
Learning to live in the present
I vividly remember a time before I was diagnosed when I felt this way. I’d started experiencing fatigue and tremor. But I also noticed that when I woke up from a nap or a night’s sleep, my symptoms improved quite a bit, albeit only briefly.
One problem I was having was pulling up my pants after I went to the bathroom. (Life with Parkinson’s disease is never about the big things; it’s always the little, everyday things that make it so challenging.) It was a slow, shaky struggle. But if I’d just woken up, I could do it, no problem. So I started “medicating” myself with naps, napping three to four times a day just to get those few moments of relief.
What I had instinctively figured out was the phenomenon known as sleep benefit. For reasons researchers are still trying to understand, some people with Parkinson’s have fewer symptoms when they wake up. The neuroscience behind it may have implications for my prognosis or for further research, but at the time, it just made me question myself. Because I had these “good” moments, I found myself wondering, “How bad could whatever is causing all this be? If I have some good times, there’s no reason this isn’t something we can fix!”
But that is the very nature of Parkinson’s disease. It’s a constant up and down — and sometimes diagonal or around the corner. It doesn’t behave. You learn tricks to manage off times, but this disease is always changing and progressing. It can be challenging not to let your emotions rule you too much as you ride the waves.
There is a famous quote, commonly attributed to the ancient Chinese philosopher Lao Tzu: “If you are depressed, you are living in the past. If you are anxious, you are living in the future. If you are at peace, you are living in the present.”
It’s a helpful reminder that no matter how good or bad a moment is, you will get through it by staying in the present. Accept the good and enjoy it when it comes. Don’t wish it away by hoping it becomes a cure or a reprieve, or by waiting for the next bad moment. Good is good, and all we can do is keep going.
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.
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