Owen

For me, Radicava falls into the same category as Riluzole- marginally beneficial. My wife has taken Riluzole basically since diagnosis, but decided against Radicava because the cons (needing a port, needing to have someone come to the house to do infusions daily for weeks) outweighed the pros (slowed progression by ~3 months). With a liquid form…[Read more]

I would recommend talking to your doctor about trying Tizanidine (Zanaflex). My wife takes 4mg at bedtime, and another 4mg in the middle of the night when she wakes up to go to the bathroom. I would also look at either OTC sleeping pills (e.g. Aleve PM, melatonin), or prescription pills like Ambien- something to help him stay asleep even though…[Read more]

My wife uses weed butter (a high CBD/low THC flower infused into butter), and we’ve come to think of it as a medical necessity. The days she takes it versus the days she doesn’t are noticeable, and it greatly helps with her stiffness and spasticity

The hardest part for me is that we’re young for ALS. My wife and I are both 39- so on top of seeing all your dreams crushed and dealing with the grief, I’m working full time, we have a 5 year old son, and now I’m a full time caregiver and paperwork jockey. I suppose we’re fortunate in a way that I can work from home, but there are definit…[Read more]

I personally would choose the Healey platform trial if it’s available to you. I’m hoping my wife can get enrolled at our local site. It seems to have a few benefits: 1) the platform reviewed something like 40 possible options, and picked the most promising 4-5 to test, so you’re already starting from a more advanced position, 2) they will be…[Read more]

We bought a used Dodge Caravan that had been converted already by Braun. It has the middle row removed, anchors in the floor for the chair, an automatic sliding door, and an automatic ramp that folds out. All in all a very simple, but practical and functional solution. We don’t have a lift, but a ramp seems much easier to me. I’m not sure what…[Read more]

Here’s an ALS Untangled article you might want to read: https://www.tandfonline.com/doi/full/10.3109/21678421.2015.1088707

It’s in regard to this supplement (https://www.lifevantage.com/us-en/shop/protandim-nrf2), which also contains Ashwagandha. It sounds pretty similar to your Dad’s supplement. It got a promising (and rare!) “A” rating on…[Read more]

Hi Igor,

You might try contacting the ALS Therapy Development Institute. They have a form you can fill out, but I also spoke with Dileep there (contact info below), who could help put you in touch with the right people. I think the problem you’re going to face is that most organizations either a) rely on grant money for specific investigations,…[Read more]

Here’s my thought on this subject. From what I’ve read, and what my wife’s doctor at Johns Hopkins said, mouse models are really of minimal use. I think they’re typically used to justify moving on the human trials, but they’re of such little use that it’s an unnecessary delay more than anything else. We still know so little about ALS, but we know…[Read more]

Hi Danielle- My first and main question is, have you noticed any improvement?

Thanks Chuck! Anyone have any experience with any of the orgs listed here? https://iamals.org/encyclopedia-of-als-organizations/

Thanks Jonathan- that definitely helped! I never knew you could expand the contacts list in the studies. Fingers crossed the trial is able to start soon!

Jonathan- could you explain what you mean by “virtually standing in line?” I haven’t seen a link anywhere to register or otherwise get in line. We’re in DC, and close to UMD and JHU, both of which will be participating in the platform trial too.

Where is the trial taking place, and who contacted you about participating? My wife is still early in her progression, so it would be great to get her involved with any studies taking place.

Hi all- I’d be interested in hearing an update on whether or not Ibudilast has helped at all. The Phase 3 trail has been pending for a while now.

I’d also be interested in hearing if anyone knows the dose and ratio AMX 0035 used between TUDCA and <span class=”st”>sodium phenylbutyrate</span> (i.e. how many mg of TUDCA, how many mg of sod phenyl),…[Read more]