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Yes—I have decided to ask each participant at my next ALS Clinic appointment to give me an article or item idea to do PROactively until the next clinic appointment that will help me maintain my current ALSFRS-R score. Indeed, I will give 1 week notice in email to each of the request. My reason for this: I am tired of clinic just watching and ‘marking progression of symptoms. I ask questions, I take articles, I have nods and smiles, but little feedback. I hope it will help!
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Yes, stretching movements of all types is helpful—at this point, I use a leg lifter while seated in my recliner (feet on or off the foot rest) to move legs up/down, left right, and to pull them into ‘knees up’ position. I do this as I am able thru the day, and only as much as feels comfortable. I had to let go of setting a number of times or minutes, because that is just not the reality of ALS in moderate to fast progression. However, I do know I want to be doing something for my smooth and cardiac muscles—as well as my affect of positivity: “something is better than nothing”. So—keep doing something!
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Kathleen and Diane – – “stretching” or rather gentle exercise has been the cornerstone of my personal regimen of living with my ALS. Doing daily gentle exercise is recommended by ALS physical therapists. And I believe by doing it, I have contributed to my slow progression. So, I encourage you to add it to your day as well. 🙂
I’ve written many articles about my exercises – – the main point is to keep to simple body movements and instead of a typical “exercise session,” you build these movements into the whole day. https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html
A list of my articles on exercise can be found here: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
Plus this one about ALS Clinic visits: https://alsandwellness.blogspot.com/2021/07/1-thing-to-always-bring-to-als-clinic.html
I’m always happy to answer questions about exercise and ALS, and to brainstorm options.
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Learned that 95% of pALS have TBI (Tick Borne Infections)
Had a test done by Vibrant Wellness.
Now know I have 3 viruses: “Burg”, Epstein-Barr and garinii.
Working with a clinic to wipe these out using SOT (Supportive Oligonucleotide Therapy).
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@ Brian,
I’m curious where you learned that 95% of pALS have Tick Borne Infections? Do you have a reliable resource you can share? When I researched this I found that this is a misconception partially because the symptoms mimic Lyme disease. ALS News Today did an article that addressed some misconceptions including this one. https://alsnewstoday.com/social-clips/5-misconceptions-als-might-find-interesting/ If there is updated and more accurate information I would definitely want to know, so please share.
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I had a setback on Wednesday. My husband couldn’t get me up from the toilet. After exhausting all attempts we called EMS. They were here in minutes and were great. I was very shaken though. After consulting my OT we had a rented hoyer lift by the end of the day. What a great tool! It will make transfers so much safer and easier on my amazing husband.
It’s not easy keeping a step ahead of this disease but we stay as positive as we can, and laugh things off.
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