ALS News Today Forums | Heatherb | Activity https://alsnewstoday.com/forums/members/heatherb/activity/ Activity feed for Heatherb. Wed, 15 Apr 2026 00:29:15 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 8cf4f4bf5249eedf9765d450adc9f1f4 Heatherb replied to the discussion What’s your dream adventure? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/whats-your-dream-adventure/#post-26848 Thu, 13 Nov 2025 22:27:29 -0600 Reply to What’s your dream adventure?

Nope just regrets.

]]> c3ec2eeebd13c9b5293f54732d1c95b8 Heatherb replied to the discussion What’s your dream adventure? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/whats-your-dream-adventure/#post-26813 Thu, 23 Oct 2025 23:13:17 -0500 Reply to What’s your dream adventure?

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. 🤷🏻‍♀️

]]> 03bc8f2b1cccdb9cb225e2d54bc07fe5 Heatherb replied to the discussion Lower leg circulation in the forum Navigating ALS Challenges https://alsnewstoday.com/forums/forums/topic/lower-leg-circulation/#post-26689 Fri, 22 Aug 2025 01:02:03 -0500 Reply to Lower leg circulation

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…

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]]> e29697831235f879b50aefc27541f2ef Heatherb replied to the discussion Has Anyone with ALS or ALS-like Symptoms Tried Cholestyramine or Mold Detox? in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/has-anyone-with-als-or-als-like-symptoms-tried-cholestyramine-or-mold-detox/#post-26487 Fri, 16 May 2025 04:17:42 -0500 Reply to Has Anyone with ALS or ALS-like Symptoms Tried Cholestyramine or Mold Detox?

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,…

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]]> a8f3ca1e8fe76b300d89675af2b595aa Heatherb replied to the discussion ALS and falls in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/als-and-falls/#post-26450 Sat, 03 May 2025 20:21:29 -0500 Reply to ALS and falls

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.

]]> d785fb1ca0099a567d953541662cf4c5 Heatherb replied to the discussion Your tips for wearing AFOs (ankle-foot-orthosis) in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/your-tips-for-wearing-afos-ankle-foot-orthosis/#post-26449 Sat, 03 May 2025 19:19:57 -0500 Reply to Your tips for wearing AFOs (ankle-foot-orthosis)

Very helpful! Thanks for the info!

]]> 9d2fa91b7dc696940c6b0626e9b81f23 Heatherb replied to the discussion Your tips for wearing AFOs (ankle-foot-orthosis) in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/your-tips-for-wearing-afos-ankle-foot-orthosis/#post-26448 Sat, 03 May 2025 19:17:02 -0500 Reply to Your tips for wearing AFOs (ankle-foot-orthosis)

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…

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]]> 6c8ab0e9ec7b940262e98f4448057c1a Heatherb replied to the discussion Dry mouth in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/dry-mouth/#post-25555 Tue, 28 May 2024 19:51:54 -0500 Reply to Dry mouth

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:

https://a.co/d/2R4uY7H

]]> 987f7539bfd38217b1716f5faaea3a50 Heatherb: @Amanda If you haven’t tried the Deanna Protocol, I […] https://alsnewstoday.com/forums/activity/p/22579/ Sun, 14 Apr 2024 22:00:35 -0500 @Amanda

If you haven’t tried the Deanna Protocol, I recommend it. My husband started it mid-January and almost all the cramps and twitches have stopped. Ask for the hardship discount. 😉 They don’t tell you upfront that they have that, but you just have to ask for it.

]]> 1 4a6f730a6f95892e085388e906ee5574 Heatherb replied to the discussion Your tips for wearing AFOs (ankle-foot-orthosis) in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/your-tips-for-wearing-afos-ankle-foot-orthosis/#post-25201 Wed, 07 Feb 2024 04:54:55 -0600 Reply to Your tips for wearing AFOs (ankle-foot-orthosis)

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…

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]]> 4bee1e70b0a8cdf6184720665978a817 Heatherb became a registered member https://alsnewstoday.com/forums/activity/p/21637/ Fri, 12 Jan 2024 15:08:30 -0600 2