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My wife's neurologist did not recommended the use of MM because she thinks that the muscle relaxation can be problematic specifically to the muscles involved in breathing. I understand that the use of MM basically aims to give some relief with problems related to spasticity and cramps, but have any of you (that had experience with this) noticed a negative effect, regarding breathing?
 
Welcome Nicolas - if you search here you will find lots of threads about MM and you will find that PALS only give good reports of using it. I haven't heard anyone say their breathing was depressed but if breathing is an issue I would ensure they have bipap on after a dose.
 
Side question on cannabis oil, the legal kind here with no thc(?) The part that gets you high. Has anyone tried the over the counter oil? And if so, does it help control nausea and improve appetite? The guy at the store says it does, and the pamphlet by the company says it will, but I'd really like to know from someone who takes it if it does.
 
There is a closed fb group Cannabis Oil Success Stories. They warn about some "hemp oil" being useless.
The CWHO (Charlotte's web hemp oil) from ROC is the same as their CWO (Char. Web Oil).

See if they list the amount of CBD in their oil.

Appetite stimulation is supposed to come from THC (the psychoactive component) not CBD. See attached.
 

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I've also heard that some THC improves the gains from the CBDs, someone told me it's called the entourage effect.
 
Never heard of that.
But I take both, as noted elsewhere. I take 120mg CBD and 60mg THC daily. I tried cutting out the THC but my progression sped up.
 
Great chart, Greg! Very helpful. Thank you for posting it.

My PALS is on an 8:1 regimen of CBD:THC. But right before bed he takes a small amount of 1:1 and sleeps through the night since doing that. The THC is very effective for muscle spasms and relaxation. His MMJ doc says there is a synergistic (entourage?) effect in using the whole plant (more than 400 compounds have been identified), however, straight CBD has been effective with seizure disorders, so we know there is neurological benefit to CBD alone.

SanNicolas, I was concerned about over-relaxation of diaphragm/breathing muscles also, especially when my husband's O2 levels began dropping to very low levels at night. But we changed equipment and settings and that solved the issue. ALS docs consistently prescribe pharmaceuticals that relax muscles (Baclofen, cough syrups with codeine, pain meds). That question demonstrates the need for this research.

Final deciding factor for us was that my PALS was choking every single time he ate or drank and we were in constant fear of aspiration. In the past 3-4 months, though, he has choked less than a handful of times. He eats anything and everything he wants. For us, that is huge!
 
These are links to the videos mentioned above that we had wanted to share here way back in March when we took them. Hope they work this time.


Before:

https://www.facebook.com/cindy.nicolaysen/videos/10207590964075901/?l=1991817003393870582


After:

https://www.facebook.com/cindy.nicolaysen/videos/10207591004876921/?l=8054869960441647773

Followed the links they bring a HTTP 500 Internal Server Error, they have been removed by Facebook***[mod]. All right I smoke once a day and it's not medical, it's just because it 's around or available. I do notice that the muscle twitches stop completely, of course Marijuana is mild muscle relaxer. It's just an enjoyment because I am alone all day and it changes mode, so what the hell. I'm going to die anyway so why not with a smile on my face :)
 
Followed the links they bring a HTTP 500 Internal Server Error, they have been removed by Facebook***[mod]. All right I smoke once a day and it's not medical, it's just because it 's around or available. I do notice that the muscle twitches stop completely, of course Marijuana is mild muscle relaxer. It's just an enjoyment because I am alone all day and it changes mode, so what the hell. I'm going to die anyway so why not with a smile on my face :)

Could not agree more! And you know what? That's true of life even if you don't have ALS....:)
 
My wife's neurologist did not recommended the use of MM because she thinks that the muscle relaxation can be problematic specifically to the muscles involved in breathing. I understand that the use of MM basically aims to give some relief with problems related to spasticity and cramps, but have any of you (that had experience with this) noticed a negative effect, regarding breathing?

Ok I can't argue with a neurologist, I am not in their class of knowledge :oops:, but I can report what I feel. I had taken IM (Illegal Marijuana) as an alternative to twiddling my thumbs. As I progress with the effects of ALS about 6 or eight months now I have noticed a few changes.

1. was losing weight (about a kilogram a week Kilo= 2.2 lbs.) that has stopped, I have held my weight for 3 weeks now. Interesting because M causes the munchies, so I have increased my calories intake (juke food). Dietary pros and cons left out. Object is weight control.

2. I have not choked 1 time since I have started to smoke. This is great and I am sure I need not describe choking misery. Although I was not chocking everyday I still have noticed a decrease in choking.:)

3. I have not noticed any relaxation in the chest muscles, I continue with my shallow breathing it does seem to become easier to breathe, less effort needed to get oxygen into my body. :confused:

4. Spasticity and Cramps, has decreased significantly, can't say all actively has stopped but the effect is really noticeable, :shock:

5. Attitude and general well being, off course one smiles this cheese eating smile when high but one feels different, if IR changes mode, escaping reality yes but why not the high and reduction of notable ALS symptoms is reduced. :twisted:

Therefore as long as I can inhale and smoke it, that is a problem because I am non-smoker but that has gotten better also, I will, if they want to jail me please do, Free coverage can't hurt all too much, ALS junkies, I can see and hear it now. :(

Be blessed and I hope people will look at this with an open mind. Because we do have alot of taboos and emotions around usage of drugs. Going to hell falling apart, whatever, we do have many dedicated doctors that can test this under clinical conditions and maybe someone not all because we are all the same but still all uniquely different individuals therefore with different effects or degrees of highs or relief. Whatever ALS is not nice and I pray that someone somewhere can come up with workarounds for symptoms, Just make our short lives a little more comfortable. I hate to say this but it is all about us ALS sickies. Have mercy on us! :cry:
 
Started MM today. I'll keep you updated
 
Thanks for your posts.

As it happens, my wife has ruled out MM completely. Her main problem right now is the breathing and the swallowing a closer second. It also does not help that in Poland "illegal" substances are not seen favorably.

I still think that there is some value in these substances if they can improve the quality of life of a person.
 
Osiyo, I'm sorry the links don't work for you. I tried them again and they came up. They were "before" and "after" videos of my husband reading the very first time he tried an oil capsule (or any MJ in his life). We were skeptical...until seeing the results.

He doesn't smoke it but has been taking oil capsules and edibles. Last week I made my first batch of tincture. It's a little higher in THC than we'd wanted, but now I can relate to that "cheese eating smile" you mention! :) And if he's happy, I'm happy!

The choking issue was huge for him as well. He only struggles now with all the medication he has to take, so he just got a referral for a feeding tube, just for his meds for now. He's kept his weight up--has only lost 2 lbs. total.

I would've never guessed I'd ever be growing and processing MMJ, but I'll do whatever it takes to keep the love of my life eating, breathing and smiling!
 
The links work for me as well. I even tried signing out of FB and they worked. So it is not a case of viewable only to FB friends. Country based perhaps?
 
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