Trying the Self-care Power Hour

Rachel Doboga avatar

by Rachel Doboga |

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The Mighty Mind Rachel

When I look back at 2018, I feel pride. I fought my ALS hard. I forced myself to finish all my meals, even when I had zero appetite, to minimize weight loss. I made it to all my appointments, though I had to reschedule multiple times. I asked for help when I needed it. That’s probably the toughest thing for me because I hate feeling like a burden.

There’s one area where I dropped the ball, though: mental health. Ironic, I know, since I write this mental health column. I simply didn’t practice true self-care.

I thought I was practicing self-care. I made time to enjoy myself and binge-watch new shows and old favorites. I laughed and had fun. However, I was numbing myself. After difficult conversations, I immediately turned on “The Office” or something else funny. I wasn’t giving myself space to feel my emotions. I certainly wasn’t rejuvenating, which is the heart of self-care. Self-care should leave me energized and empowered.

This year, I am going to try this one-hour formula for a mind, body, and soul reset. The power hour formula allows 20 minutes for each category, and the website lists activity ideas for each one, which is incredibly helpful for a beginner like me. I also recommend that caregivers take a power hour to prevent burnout. The body aspect may be difficult for us pALS, so stretching is a great option. Since I am immobile, I will have to do passive stretching with the help of a caregiver. I am looking forward to reading, stretching, and listening to my favorite podcasts to recharge in 2019.

How will you practice self-care in the new year?


Note: ALS 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 other 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 ALS News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.


David Buschhorn avatar

David Buschhorn

When I got to the point where my writing was covering many of my bills, my stress level dropped so much I couldn't believe it. I was doing something I LOVED while working at a job that also fulfilled me. I truly wish everyone could be in that situation (minus the impending doom of a neurological disorder that's just waiting to find the right nerves to kill so it can get the rest of you too).

Then, for money, I changed jobs in the same company... massive mistake :-( I was so unhappy and massively stressed, my disease progression accelerated like crazy. In hindsight, I wonder how many years that one year of soul-draining work took from me.

Double the money, half the lifetime...

Anything that reduces stress seems to help! I've come to realize that, even without ALS, stress, after about the age of 40 or so, is dreadful for your nervous system. I BELIEVE (no proof) that if you can find something you enjoy so much, it just fills you up (not video games unless you're designing them), you'll live longer. Art, playing/writing music, writing stories, etc.. I THINK those help keep you positive and alive while reducing stress.

I, too, have NO appetite or sense of thirst. Without the feeding tube I'm sure I'd be dead by now. Gained back 30 pounds this summer, so it's working :-)

Before the feeding tube, for a while there, I really looked great :-)

Weight loss was a snap with the "ALS, No-Appetite Diet" :-)

All I craved was protein so I lost fat and kept muscle while eating heavily seasoned chicken, beef, pork, fish, that kind of thing. The problem came with choking, as my ability to swallow got worse. Goodness, that's not a fun feeling...

Really fatty things like bacon (yum!) were a nightmare. Dry things like egg yolks just wouldn't go all the way down. If swallowing stuff halfway down my throat was the goal, I was a freaking CHAMPION. Or at least finishing on the podium :-)


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