Heatherb
Forum Replies Created
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Nope just regrets.
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We applied for my husband to drive with 3 friends of his to see a Saints game in New Orleans and spend the night at a nearby hotel. He had never been to a Saints game. We were turned down and it was pretty depressing for him. Now it would be too late for him to only go with the guys because he needs too much help. 🤷🏻♀️
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My husband was starting to have this problemwas diagnosed in August of 2023. Illtell you what works for us. We massage the legs and feet with organic virgin coconut oil then apply compression stockings before bed. If the edema is particularly stubborn, we also do 10-15 minutes on a vibration plate twice a day also. The coconut oil is sold at Walmart and the vibration plate was about $100 from Amazon. He doesn’t stand on the plate. He just sits with his legs up on a recliner and I rest his lower legs on the vibration plate. It makes him itch like crazy for about 15 minutes afterwards, but it works. I’m kinda surprised nobody mentioned these in here.
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Hi RZ! We have experience with this. My husband was diagnosed with ALS in August of 2023 with symptoms of left leg weakness, left foot drop, frequent falls, and fatigue. We found a functional doctor in March of 2024, who ordered a urine mycotoxin test and a tickborne panel with Vibrant Wellness. He tested positive for 7 kinds of Borrelia, babesia, and other viruses as well as 3 kinds of mycotoxins. The doctor said he definitely thought all of these viruses and toxins were “adding to his burden and preventing him from getting well. We started detoxing immediately. He takes liposomal glutathione, herbals from Dr. Rawl’s herbal immune boosters, methylene blue, rifampin, as well as Zeolite binders (cycled). We did a dust test on our house and it tested at the highest level for mold. We don’t have any leaks and no carpet. We have since had both central ac units along with all ducts changed and he is near a medical grade Austin air filter at all times in the house. He has not had any further progression since the spring of 2024. No recovery of function as of yet, but no progression. 💪🏻 The ALS clinic neurologist now says “clinically more probable PLS”. We have retested the mycotoxin urine test and it showed much lower levels of the previous molds. 🙌🏼 But we still have a ways to go. We also found out in the fall of 2024 that his A1c was out of control, so he is also on Mounjaro and a low carb diet and has lost 30 pounds. He was never in the military. He was an aviation mechanic (possibly exposed to different types of chemicals) before this and under a lot of stress. I hope this helps you. I can share my email in a pm if you would like any other specifics. 🙏🏻 Heather B.
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I highly recommend an electric chair lift from Amazon. I’m actually not sure why this is not something that is loaned out from places like Team Gleason, etc. It has been worth its weight in gold.
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My husband uses a cpap at night and was complaining of horrible dry mouth in the morning. We had previously tried a chin strap, but it would never stay on. He came across a nose breathe trainer on Amazon that works great. Problem solved. Link below:
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Yes I bought my husband a pair of the Sketchers slip-ins. It would be nice if he could also wear them with the afo but they don’t have removable soles, so that’s out. He wears one afo right now and for some reason it makes his lower leg and ankle very swollen. So depending on where he is going and who he will be with, he just wears the sketchers and uses his cane. They are really convenient and comfortable.
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Very helpful! Thanks for the info!
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My husband only wears one with no issues at all. We were told if he had some twitching, but no actual foot drop, it was recommended to not wear the other AFO for now. The restricted movement while wearing it tends to cause swelling. Most doctors would probably not have an issue with ordering an AFO for both legs, (even though they feel it’s not necessary at this point) that way you can have it ordered and ready when or if you ever need it. Sometimes progression comes quicker, and it’s nice to be prepared. Hope that helps!