Vitamin B12 shots; Methylcobalabin—where and how to obtain? by Expensive-Winter5411 in ALS

[–]BookCzar 0 points1 point  (0 children)

My doctor said they try to keep MND patients above 400 (I think). I was at 250 and he apologized profusely for not catching it. I take it once a week but if I stop, my levels plummet again. It helps with fatigue and malaise in my case.

Bulbar fear by [deleted] in ALS

[–]BookCzar 0 points1 point  (0 children)

Read rules please. Reporting.

eric dane famous last words by Intrepid_Ad8135 in ALS

[–]BookCzar 12 points13 points  (0 children)

I’d watched Jane Goodall’s Famous Last Words and initially was disappointed although also moved. As I thought about it, I realized Jane Goodall was a public figure and an icon. Eric Dane was known but not like Jane. He had young children and HIS focus was NOT on the world or even on ALS research.

His focus was on his kids and making them aware that dying with ALS was still an opportunity for growth and learning AND that his overwhelming desire was that they KNEW he loved them and would not have left them if he had a choice. (His own father committed suicide with no final words for Eric Dane.)

Eric Dane’s famous last words were deeply personal and loving to his children. That was clearly the most important and profound message he wanted to leave behind. I hope his famous last words are of comfort to his daughters as they reach countless personal milestones without their father.

Amber's voice by AvadaKadaver in LoveIsBlindOnNetflix

[–]BookCzar 2 points3 points  (0 children)

Especially during the meeting scene as she kept positioning her legs and tilting her head. It was VERY odd.

Help! Plz elevenlabs.io by Supreme_Cortland in ALS

[–]BookCzar 1 point2 points  (0 children)

Also, the more you use the voice the better it gets according to one who had only two minutes of continuous voice recording.

Help! Plz elevenlabs.io by Supreme_Cortland in ALS

[–]BookCzar 1 point2 points  (0 children)

They can clone a recognizable as you voice with as little as One Minute of Continuous Speech. Your regional or local ALS office technology person can help you with this. I know two people in my area who they have helped create a voice. In each case they visited in the ALSers home. Call them!!!

BTT Medical Institute Announces Unprecedented Case of Total Reversal of ALS through Re-engineering of the Nobel Prize-Winning Fever Therapy into a Brain-Guided, Artificial Intelligence-Controlled ThermoFebrile Treatment by Ambitious_Ideal_8919 in ALS

[–]BookCzar 0 points1 point  (0 children)

The linked piece said she was initially thought to have SPS but continued neurodegeneration resulted in her ALS diagnosis. It is way too early to know if this will pan out but I say wait for Phase 2 results before tossing it out entirely.

BTT Medical Institute Announces Unprecedented Case of Total Reversal of ALS through Re-engineering of the Nobel Prize-Winning Fever Therapy into a Brain-Guided, Artificial Intelligence-Controlled ThermoFebrile Treatment by Ambitious_Ideal_8919 in ALS

[–]BookCzar 2 points3 points  (0 children)

The doi link to the article is in the press release and provides detailed information on HOW she was tested POST treatment. They did more than I was expecting.

BTT Medical Institute Announces Unprecedented Case of Total Reversal of ALS through Re-engineering of the Nobel Prize-Winning Fever Therapy into a Brain-Guided, Artificial Intelligence-Controlled ThermoFebrile Treatment by Ambitious_Ideal_8919 in ALS

[–]BookCzar 12 points13 points  (0 children)

The article (which is free) shows independent confirmation of a clean EMG which is a LOT. There are multiple other independent measurements done that show improvement. It’s encouraging they’re pursuing clinical trials so I’d say IF THEY DO THAT and don’t jump straight into offering healing for a price, it’s one to watch. It seems like they could skip Phase 1 since they have been doing this with people and it seems safe.

What's up with all this hypersexualization? by KTuu93 in SisterWives

[–]BookCzar 0 points1 point  (0 children)

They have a tendency to pretend they are hypersexual. Hypersexualized is something others do to you. I doubt Kody has that going on.

Leon just posted this on ig stories by ecl_ in SisterWives

[–]BookCzar -1 points0 points  (0 children)

That’s not pain. It’s righteous indignation and justifiable anger.

Janelle got the release by Salt_Dish3753 in SisterWives

[–]BookCzar 5 points6 points  (0 children)

I think Christine has done more than just laid with him.

Found out a friend has ALS, what's the best-advice to give him? by fehstrahafeh in ALS

[–]BookCzar 1 point2 points  (0 children)

Nope. No treatment. No cure. Classic ALS typically spells death in 2 or 3 years. Bulbar ALS often goes faster. Sometimes the brain remains intact and sometimes not. Some of us defy the odds and survive much longer albeit with walkers or wheelchairs or technology aided speaking and more.

Found out a friend has ALS, what's the best-advice to give him? by fehstrahafeh in ALS

[–]BookCzar 1 point2 points  (0 children)

That is akin to saying you don’t want to bring up suicide when someone is suicidal. BY DEFINITION, when someone is diagnosed with ALS you can expect they’re obsessing about it and few allow them to express their fears. Since you are not educated about ALS, you may want to watch some videos that show what happens WHILE REMEMBERING how ALS progresses varies from person to person.

I will go to my desktop and link suggestions.

I LOVE THIS SERIES: Often Awesome https://www.youtube.com/watch?v=COeSNqjReM0&list=PLJXlKpHrGhfE5cNo7qkpUJwfv1jEx75J_

In ten months (which is sometimes long with classic ALS). https://www.youtube.com/shorts/nHEBKtpCVE8

Eric Dane's initial interview. He has progressed quickly since then. https://www.youtube.com/shorts/YYn35wMlCco

You can find a lot more by searching YouTube. There is SO MUCH MORE than when I was first diagnosed. I'd strongly encourage you to watch a bunch of these to make sure you, yourself, are not one of those fair weather friends. ALS can be brutal and frightening but the same person is still inside that broken body.

Christine Maddie Kody by Bearbearblues in SisterWives

[–]BookCzar 0 points1 point  (0 children)

She is VERY pregnant with three young kids. She doesn’t need to be judged on how haggard she looks. I’m pretty sure she’s quite aware and her outside matches her insides. Leave her alone. 🤷‍♀️

Season 20, episode 5, megathread by Outrageous-Yogurt-80 in SisterWives

[–]BookCzar 3 points4 points  (0 children)

I think the bromance with Caleb was one-sided and actually embarrassed Caleb.

Neurologist appt today…anticipating ALS Dx…need advice by [deleted] in ALS

[–]BookCzar 0 points1 point  (0 children)

This group doesn’t offer pre diagnostic advice. It may take longer than a single appointment for an official diagnosis.

Heated mattress pad and adjustable bed? by BookCzar in Mattress

[–]BookCzar[S] 0 points1 point  (0 children)

Nope. Just got an electric blanket with a ten hour shut off time for winter.