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How do you stay healthy while living with ALS?
I’ve been working while living with ALS for over 3 years. I believe that having slow progression ALS and a positive attitude have helped me tremendously. I’m also one of the fortunate pALS that on QALSody. Mental, physical, and emotional health is important, and we need to do our best to stay healthy in all ways! What bits of wisdom can you share with other pALS to help them live with ALS and maintain good health?
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2 Replies
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G and I retired in late 2016 but that just meant more projects and a busier schedule. It also meant that we got to spend a lot of quality time together and we will never regret that. We have great memories of that chapter and revisit those adventures quite often. Keeping our mental health balanced (challenging) helps with our physical health. When he was diagnosed with the bulbar-onset ALS in July 2024, we became even more vigilant about avoiding crowds, masking up, getting vaccinated, and being in control of our surroundings. So far so good. We are still No-Vids, not having gotten covid, flu, RSV or any of those nasties. His calories, hydration, and meds all go through the feeding tube, and so that routine is quite stable. I have learned to cook for one person – not as fun. We are selective on who can come to visit and encourage a lot of zoom visits. We are in regular contact with his neurologist and palliative care doctors, and I receive therapy support which has been incredibly helpful. We both are super careful about avoiding injury and germs, knowing if one suffers it will severely impact the other. Even though he is house bound, he’s not bored. Even though I am overwhelmed – always – I wouldn’t change our approach ever. Spring is coming, that means more sunshine and allergies… And so it goes.
~L
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LandG,
It sounds like the two of you are a devoted couple that works great together! You shared some awesome tips. Thank you.
Amanda
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