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How do you fill your cup on difficult days?
Living with ALS or caring for someone who does can be quite a challenge. How do you keep your cup full while juggling challenging symptoms, endless tests, and the drain of deciphering it all?
Share your strategies and stories with us!
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10 Replies
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As a pALS, I’ve learned that creating “quiet time” into or at the end of my busy/stressful days helps calm my body and mind. Sure, it would be easy to zone out scrolling through social media or watching a movie – – but quiet time – – noticing my surroundings, the colors, sounds… being present, is what helps me prepare for another day of “living with ALS.”
I look forward to reading what our forum members do. Please tell us 🙂
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I agree!
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Living with my diagnosis since March. Bulbar onset. Taking one day at a time and enjoying every minute with friends and family. I sometimes eat a cannibis gummy to help take the edge off and help to sleep.
The best medicine is stay active as much as possible and smell the coffee and take in all your thankful for.
Life is so prescious…..
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I was also diagnosed with Bulbar- onset in March. I can no longer speak or eat. I’m living on boost.
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Hi Ginny,
I hope you made it through the holidays as best you can. I feel for your journey and I feel my progression is right near yours. I’m trying to live my life to the fullest and stay in the moment. I’m lucky to have an amazing wife and caregiver!! Traveling alot, although difficult at times, breathing is tough ..stamina is not very good. good luck and warm regards..Mahone
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Ginny, I too have to be careful of foods I swallow. Perhaps my breakfast smoothie will give you more energy and nutrients (recipe included in the post)
https://alsandwellness.blogspot.com/2024/12/how-my-breakfast-routine-helps-smooth.html
alsandwellness.blogspot.com
How my breakfast routine helps smooth out my mornings
ALS ptient Dagmar Munn shares her morning routine and the recipe for her high-protein fruit smoothies.
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My husband was just diagnosed in December. Just got done with all the test. Emg, MRI. We see doctor in February and I just know he’s going to say he has the bulbar onset. We are both scared. My husband is such a proud man, in great shape and a huge golfer. This truly has been a devastating last 2 months. We just traveled to Zion National Park, and plan on traveling a little more, until we can’t.
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I’ll keep you both in my thoughts. Yes, travel while you can.
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so sorry for your husband’s diagnoses. Travel while you can..great idea….I too was a golfer but my game has gotten tougher to maintain(not a great golfer to start)… I still play with my wife but dropped out of my league. . Keep doing what you can as long as you can!!! Prayers for you all……Mike
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Great Question!
When I was diagnosed I told myself I would live each day with intention! So, every morning I think of a couple of things I am grateful for and I focus on those. I’m lucky enough that I can still work, and I find my career very rewarding. My colleagues tell me that I am inspirational because I am facing ALS with such a positive attitude. (I do have my bad days!!) That reminds me to stay positive and enjoy my work family while I can. I know how important mental health is to my physical health, and I try and focus on staying positive and spreading positivity.
When I need to relax, I spend time with my mother and pets. They provide me a great deal of comfort and purpose.Amanda
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