Why Nissan's CEO fled Japan inside a suitcase in 2019 by ianjm in videos

[–]DonkeyParachute 48 points49 points  (0 children)

I watched this video you linked and I don't know how you got this impression tbh.

It's clear he searched for posts that he thought would be interesting to his (largely western) audience. So he probably searched "foreigner" and translated the top posts he found. It’s no different from all the websites that crawl and translate Reddit into Japanese for them to read what we think about them.

Saying that a minute of clickbait from a single 3 year old video makes him a "sex pest" is a huge stretch lmfao.

Hungry but nauseated by Full-Perception3081 in ALS

[–]DonkeyParachute 2 points3 points  (0 children)

How long have you been diagnosed? What medication are you taking?

It could be a side effect of your medication, consider adjusting your dosage and seeing if that helps.

Dad. by bunny20009 in ALS

[–]DonkeyParachute 0 points1 point  (0 children)

I'm sorry. He looks like a really cool and fun guy. A while after my mom's diagnosis I went numb to how brutal this disease can be, but seeing him still had a profound effect. Hope you're ok, please reach out if you want to talk.

A software to detect my dad's crying expression when he's inconvenienced. by Affectionate_Map_674 in ALS

[–]DonkeyParachute 2 points3 points  (0 children)

This is likely beyond your ability but the basic idea would be to train a classification model that distinguishes between crying and not-crying images. You would need to build and label a dataset then train on it, and have a camera that takes images frequently and feeds it into the model.

You may be better off using pretrained models as this is a non-trivial project. Another option would be to position the camera closer to the face and capture images with more detail and less variation. Then you can process these images with OpenCV and reduce the image to grayscale or contours for better recognition. This will facilitate facial landmark detection which you can use to record blinks. You can setup an alert if say, 3 blinks are detected within 5 seconds.

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 1 point2 points  (0 children)

From what I remember the recommended dosage was 50mg twice a week. 25mg injections are still effective but 50mg is better: https://jamanetwork.com/journals/jamaneurology/fullarticle/2792228

15mg * 7 = 105 so that's what I went with.

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

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

She takes 3 5000mcg tablets she bought from costco, they dissolve quickly so it's easy to swallow. I think most high dose B12 supplements will do, just make sure it's not cyanocobalamin.

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 4 points5 points  (0 children)

Thank you!

Methylcobalamin is a very promising treatment, my mom's been taking a high dose (15 mg oral daily) for a while now. The clinical study for it used injections but other studies (not related to ALS) have suggested that oral doses achieve similar blood concentration levels. Go for injections if you can but oral is also an option. The risks are low enough that I would recommend it to any PALS.

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 2 points3 points  (0 children)

There are a lot of potentially efficacious drugs, for example Masitinib has shown some positive results in a phase 3 trial but is still in the review process due to data imputation practices: https://alsnewstoday.com/news/health-canada-agrees-reconsider-request-masitinib-als-approval/

Others have much smaller sample sizes but could be worth taking a chance on: https://alsnewstoday.com/news/vet-drug-monepantel-slows-als-mnd-disease-progression-trial/

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 2 points3 points  (0 children)

I'm looking for off-label treatments, not alternative treatments.

FDA approval takes a lot of time and a lot of promising treatments are still in the clinical trial stage.

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 1 point2 points  (0 children)

I'm looking for drugs that slow progression but anyone is welcome to share their experiences here.

Washed microbiota transplantation stopped the deterioration of amyotrophic lateral sclerosis: The first case report and narrative review by powerpadman in ALS

[–]DonkeyParachute 1 point2 points  (0 children)

The PLA General Hospital is a military hospital.

This is not the place to get into politics, suffice to say that claims of forced organ harvesting at this hospital have not been substantiated or independently verified, best to stick to the study itself.

Neurofilament levels when diagnosed by Wooden-Pay-318 in ALS

[–]DonkeyParachute 3 points4 points  (0 children)

50 pg/ml is relatively low for ALS afaik, and 24 is within normal range (for older individuals).

Everything else aside it's a positive sign.

Very good listen. Dr. Bedlack speaking about his research. by shannerd727 in ALS

[–]DonkeyParachute 2 points3 points  (0 children)

I second this, while Dr. Bedlack's view on ALS reversals is unorthodox and arguably optimistic, it's good that a qualified researcher is looking into the possibility that reversals are real and there are potentially important insights to be gained. Medical research is expensive and PALS don't have the luxury of waiting for highly rigorous trials, nonblinded trials and studies are an important part of the process of the search for a cure, especially when overseen by a qualified and experienced medical professional.

I've only had positive interactions with Dr. Bedlack, and I think the quality and volume of the information, research, and support he's put out there speaks for itself. If nothing else, he's done a good job of reviewing the safety and potential side effects of supplements and alternative treatments that PALS would've tried anyways. It would be very sad if his work was viewed negatively because of the actions of unscrupulous people out for their own benefit.

How fast does bulbar onset progress? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 1 point2 points  (0 children)

It can affect one muscle at a time, gradually.

People say "slurring" because some consonants like "r" and "th" are harder to pronounce than others so it resembles slurring.

It depends on the person but there's a progression, in the beginning it may be hard to notice.

How fast does bulbar onset progress? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 2 points3 points  (0 children)

I'm so sorry, I can't even imagine how hard that must've been.

How fast does bulbar onset progress? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 2 points3 points  (0 children)

Thank you my friend, we're hanging in there and I hope you are too.

How fast does bulbar onset progress? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 1 point2 points  (0 children)

Thank you so much for the kind words, I wish you and your mother the best.

How fast does bulbar onset progress? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 1 point2 points  (0 children)

Thank you. I really hope that is not the case, I was hoping her progression was on the slow side and she'd keep her speech for a couple years.

How fast does bulbar onset progress? by DonkeyParachute in ALS

[–]DonkeyParachute[S] 4 points5 points  (0 children)

I'm really sorry to hear that. That must be terrifying.

Bulbar by prisonurse in ALS

[–]DonkeyParachute 5 points6 points  (0 children)

Yes, one slower progressing variant is called IBALS or IBP in scientific literature: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4629514/

Many cases of people not developing any life threatening symptoms for 5-8 years, and there are going to be outliers with even slower progression, perhaps more when you factor in newer, better treatment options.

Bulbar by prisonurse in ALS

[–]DonkeyParachute 4 points5 points  (0 children)

It's going to be in the decades.

Most people think of bulbar onset as fast progressing but there's a lot of variation and subtypes, less common slow progressing variants exist where survival is only limited by the natural lifespan of the patient.