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What activity helps you recharge from the challenges of living with ALS?
There’s a difficult balance between tending to your body’s needs due to ALS and finding time to pause and let your mind destress.
For example, living with SMA can take a toll on SMA News Today columnist Alyssa Silva’s mental health, but she finds refuge and peace in trips to the beach. Use this link to read her column:
https://smanewstoday.com/columns/finding-temporary-escape-challenges-living-sma/
What activity, or activities, give you a temporary escape from the challenges of living with ALS?
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8 Replies
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I enjoy scrolling through Pinterest and looking at all the unique knit/crochet vests and bags people are creating. Evenings find us streaming a movie on TV – – documentaries, mystery, romance, you name it, if there are good actors and a good storyline, I’m captivated and not thinking about my ALS for 2 hrs.
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What helps Me is to go outside and ride around in My Electric Wheelchair. I also I do go for a drive with My wife or son in Our Van. And I love to read My Bible each day, read My Devotionals, and a time of Pray with the Lord. All of these help Me.
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I enjoy going to our local heated pool for aqua ability exercise. 45 minutes of exercise that I can do with no fear of falling and feeling good helps de-stress from ALS.
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As a type A personality, getting realistic about my energy levels has taken me a bit. One thing I knew, if I had no purpose, I would not have quality of life. Also, knowing myself, no one around me would enjoy their lives either! 😉 A retired pastor, trusting my Lord and Savior, reading my Bible and praying is a long time habit. I delight in the extravagant time I have now. But purpose …. I found in advocacy. We founded a nonprofit organization to educate and advocate for those affected by ALS. https://www.debbashope.org is the website that explains the mission and events for Debba’s Hope 4 Tomorrow. Advocacy = writing, speaking, teaching allows me to have purpose, take care of my health, and live with abundance every day.
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Youtube, blogs, news , in general surfing the internet.
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I enjoy going for walks in the metro parks (paved) with my daughter & grand puppy in my ‘zoomer’ chair.
The fresh air is so good for my whole body.
I also enjoy while the weather is still nice, sitting on my deck every morning to start my day.
One more thing… having conversations with people even though my voice is impacted. I just turn up my trusty voice amplifier.
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I am enjoying the freedom and time to read as much for pleasure as I want! And our neighborhood has a book club which now meets at my house so I can continue to participate..
But the thing that does more for my well-being and state of mind than anything else is writing journal entries on caringbridge.org. I write when I am feeling sorry for myself in order to “get over it”. I not only cheer myself up by accentuating all the positives in my life, but many family members and friends who follow my posts say that I inspire them. I reminisce, tell stories, and share my thoughts while informing a tiny bit about my current status and sharing photos. I’ve had over 1500 visits plus comments. Family, friends, neighbors, my former line dance, instructor, former students , my PT, and so many more return to read what I write every time I post something new. Knowing that they are sharing this with me means so much! ❤️
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CaringBridge is a great resource!
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