Alternative Methods

[Nikki J]

I will Brad. It is going to take a bit though as they made several changes and I am doing one at a time

 

[notBrad]

No worries. Hope it turns out exceptionally well for you!

 

[bear1973]

Thanks a lot for posting this info, Brad. I've ordered some L-Serine and some Tudca along with some MitoQ. I'll get the MitoQ in the next few days and will post any results. Lol re: mad scientist. I exercise as much as I can - that came directly from my neuro as being beneficial

 

[GregK]

First off: do not excercise to the point of muscle breakdown as a 'normal' person would. Doing so will only hasten your physical deterioration. Range of motion is good, pool is great.

Looking for an edge with supplements, treatments and various protocols is good, but be cautious. There are snake oil salesmen who will love to prey on your vulnerability.

At this time there is no (zero, zip, nada) cure. There is one (1) recognized treatment in the US. There is no one-size-fits-all, sliver bullet for ALS. There are many possible treatments but there is no guarantee that what works for me (mmj) or for notBrad (Mmj, AL-C, LS, etc) will work for you.

I tried AL-C and LS but felt that they did nothing and possibly sped my progression up. The Deanna Protocol is too complex and expensive for me. There are stem cell 'clinics' that would love to empty your bank account, and I saw one PALS crank up a GoFundMe site to pay for his.

If there was (or rather, when there is) a cure, you can bet the farm that this forum will spread the word.

Never stop searching for something that works for you, but don't become a potential posthumous Dr. Phil guest "how I sent my family to the poorhouse chasing an ALS cure".

 

[BlueandGold]

Great post GregK. Wish I had access to the mmj here in WV. My son was working in the industry in Denver but recently moved back home to be with me I need to talk him into going back.

Vince

 

[notBrad]

Totally agree with what Greg said. When I exercise now it's purely to keep the muscles toned and get blood flow to them.

My rule of thumb is to not lift anything I can't do at least 15-20 reps of and to stop the moment I have difficulty doing another rep.

As far as the supplements, same thing. Everything seems to work differently for everyone. Now that said I would still recommend high dosages of Fish Oil and Coconut oil. Why? Ample evidence of neuro-protective qualities and they're good for you anyway and they're cheap so... Why not. ;-)

Ditto for MMJ, known anti-imflammatory effects and.... well, you've got this horrible disease you may as well be able to relax and catch a bit of a buzz now shouldn't you...

Vince - if he was working in the business he has got to know how to get some to you.

 

[BlueandGold]

Brad,

It's treated like heroin in this state! I don't want to risk him getting in trouble.

Vince

 

[notBrad]

Looks like MD has MMJ. Maybe close enough to slip over there...

 

[ShiftKicker]

I have found mmj at night (not smoking it, though)works way better than Baclofen for spasticity. I have eliminated Baclofen entirely from my daily regimen (with doctor's knowledge) and not regretted it at all. I actually think Baclofen exascerbated my night time spasticity and caused issues with respiration.
I am also taking coenzyme Q10 (Ubiquinol), N Acetylcysteine, vit D3 (2000mg+ daily) and coconut oil.
I am interested in trying lunacin, based on previous postings, and also interested in hearing feedback about peoples' experience with N Acetylcystine (effective/recommended dose, etc).

 

[bear1973]

Yes - it's a good point you make, Greg. As for me I'm going by what ALS Untangled says. And as for what they say....they don't recommend Lunasin or the Deanna Protocol (at this time)...that said, they DO recommend "further study" of: Coconut Oil, Cannabis, Vitamin D, and more recently MitoQ. So that's good enough for me...

 

[anderkling]

From what I read on ALS Untangled, Lunasin is not ruled out, more research is necessary, though. I am taking the Lunasin regimen, and will let you know if I see an improvement.
Charlene

 

[ShiftKicker]

Charlene, where do you get your lunasin?

 

[ShiftKicker]

Never mind- I see on another thread that you ordered it online. Apologies. I was hoping to find a local storefront that might sell it.

 

[anderkling]

No. Only available online through multi-level marketing. We paid almost $1000 CDN for one month.
Charlene

 

[BlueandGold]

It is crazy expensive if you follow the Mike McDuff regimen. I'm going to talk to Bedlack at my Sept 1st Duke appointment before I dive into this.

Vince