When Parkinson’s gives you superpowers you don’t really want
If I need a nap, which I often do, I can crush that requirement of my condition
When my daughters were young, I used to joke that my superpower was the ability to worry. Now that they’ve grown into capable young adults, I don’t worry quite as much. Plus, what’s left to worry about? I already have an incurable illness, as I was diagnosed with Parkinson’s disease in 2015, and my husband, John, has survived a heart attack and quadruple bypass surgery. Given that, we’re doing fine, thank you very much!
My new superpower is napping. The fatigue is real, and no matter how hard I try to stay awake, once I’m having a nap attack, there’s no stopping it. It can strike at any time of day. Sometimes I’ll have a morning catnap, usually an afternoon siesta, and often I can’t manage to get dinner made without a quick, refreshing 40 winks.
A couple of years ago, we bought one of those fancy espresso machines. Since then, I’ve been employing what my friend calls “the strategic use of caffeine,” which usually works to get me through a boxing class. But after that, it’s game over, and I’m heading straight to the couch. I’m also concerned about drinking coffee too late in the day. Even though I like it, it affects my sleep pattern.
I fondly remember the days of going out for dinner and finishing it off with a cup of coffee. It didn’t bother me at all, but things have changed with Parkinson’s. I still fall asleep, but I wake up in the middle of the night and wonder why I’m awake. Then I remember that I had a coffee after dinner. I lie awake for a couple of hours, questioning the wisdom of that choice. The importance of a good night’s sleep can never be underestimated.
Handling fatigue is a real issue for those of us living with Parkinson’s. There’s no one-size-fits-all solution, but there are lots of tips out there that might help. The solution I’ve seen mentioned the most is to exercise. I’m on that train already, and I’m still fatigued. During the exercise itself, however, I feel energized and driven to do my best — especially if I’ve had a coffee.
Of course, I continue to embrace the idea of naps. Is there no way around this desperate need? Imagine how much I could get done if I didn’t need to nap. If I could muster the energy to “pull an all-dayer,” as John now calls the days when I don’t take a nap, I’d have more time to read, cook, and visit with friends. My house might even be clean!
Perhaps a more useful suggestion would be to change my schedule. I’m battling a movement disorder, after all, and that can be a real energy sucker. Yes, I can have naps if they make me feel better, but setting an alarm would be useful because those quick 40 winks can turn into a deep, two-hour slumber if I let them.
I figure 30 minutes should be enough to take off that sleepy edge and keep me going.
Maybe compromise can be my new superpower.
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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Comments
Penelope Casotti
I actually envy your ability to nap. Sleep deprivation is the bane of my existence. Two or three nights a week I take sleeping pills which will give me a reasonable sleep but any other night I just cannot. The apathy of PD and the extreme tiredness add to the total lack of motivation of my day to day life. But then, I exercize even when it is the last thing I want to do. This gives me enough oomph to get a few things done. If I could do the PD classes every day I would be set! I do not love the changes I see in me. So, I schedule everything for the mornings and do what I can in the afternoons. As time goes on a pattern is emerging, whether it be positive or not. We are grateful for the positives. 🇦🇺
Lyndon (Lyn) B. Carew, Jr
I'm 90. Knowingly had Pd for about 6 mo. Probably actually for 2+ years. I never used to nap but now it is a daily part of my life and I love it. But it gets in the way of me exercising. I need more control of my daily activities, especially if exercise is good for PD. Thanks.
jennie
I also have exhaustion issues. It seems to present itself with me in a very similar way as in the article. Except I don't drink coffee.... ever. I really do agree with timing the naps as can fall into deep sleep for a couple of hours, then do not sleep properly at night. I also believe that exercise is paramount to stabilise the Parkinson systems.
It is very helpful to know that other people have the same difficulties and have found a way of helping themselves. And are sharing them with the larger community. So thank you for that.
Gina Lewis
During the last month, fatigue has overwhelmed me. I am seeing my movement specialist on July 6, 2023. I will write after I see him. Maybe my meds need adjusting. Maybe I'm just getting worse. I've had PD fot 13 years,
Mike
maybe you can try Amantatine, it helps to keep me awake
Dr Jai Marolia
I have been suffering from PD 7 yrs., I am on Multiple meds. via the Duo Dopa Tube
I am fairly well controlled . However in the last 4-5 Months I developed severe dizziness and Balance Problem which starts after my evening Hot shower at 7pm, and does not go until half an hour after my dinner at 8.30pm. I have tried everything, but without success.
I would like to share your experiences if any one of you is also having similar symptoms.