Is there any diet that can help against progress?

[dbltree]

How much coconut oil per day is a good idea?

No firm answer to that but 4-12 tbls per day, I take 4 tbls CO in my coffee and the rest MCT oil in smoothie, salad etc.

There is no assurance of anything when dealing with a fatal disease like ALS but rather increasing survival time and quality of life. The Deanna Protocol mouse trial showed mice lived longer on DP, not normal but longer...right now that's the best we can hope for.

 

[ANDMON]

Hi dbltree,
Please can you be more specific when you say “We avoid grains because they are inflammatory”. I’m very interested in your explanations as I wait for other sets of EMGs and my symptoms take me day by day to something that involves face, tongue, and throat. Can you tell me more about your diet, please?
God bless us!
Marcia

 

[pearshoot]

affected definitely not directed to you. read above posts wishing you sucess

 

[zoohouse]

Fat... Definitely lots of fat.

Don't those cleanses give you diarrhea?

 

[zoohouse]

I have mentioned on other posts that I give Tim a smoothie everyday that consists of ¾cp of organic vanilla yogurt, ⅓cp of hemp hearts, ¼cp of chia seeds, ¼-½cp of his favorite juice, enerex greens 1TBSP, 4 TBSP of organic coconut oil, 1 banana, and ½ cp of frozen fruit. It is a pretty large smoothie, but he drinks it at his leisure. When we were in Seattle 2 weeks ago he weighed in at 225lbs. After his initial 30 lbs loss, I started him on these smoothies, and he has maintained his weight. Has it slowed progression? It is hard to know, but he isn't losing weight, and his bowels are very regular, even though he doesn't have abdominal muscles to push with.

 

[affected]

@pearshoot - I'm so easily confused

 

[pearshoot]

zoohouse good receipt, keep it up my smoothie is about three cups, that a lot of slurping

 

[pearshoot]

affected there is a older post by someone diagnosed over 20 years, indicating there is nothing you can do, its all in the luck of the draw

 

[affected]

@pearshoot
aha, I didn't look far enough back in the thread before...

My PALS has taken in a lot more nutrition in the last 24 hours, and he just keeps sleeping. I think his body is saying - just go away and let me use all of this please! I told him he should just relax and have a nice sleeping day off to digest.

 

[Barbie]

That is good new Tillie!

 

[jellis86]

I placed the following on another forum but so far no real responses...maybe someone here can answer, not looking for an excuse to go off the protocol, but honestly I'm not sure it's helping me at all:

I have been on the full Deanna Protocol for over 2 months. Prior to that, since June, I was taking AKG and AAKG, Glutathione, Methylcobalamin, Vitamins C & D, and Ashwagandha.

Currently I do not take Ashwagandha, but I do take everything else on the latest Deanna protocol list plus vitamins, protein powder and trehalose.

Before I started any of the protocol, I considered myself to be rather slow progression wise. My speech, and some swallowing difficulties were the only symptoms I had for about 2 years. Then left thumb/forefinger, about 1 year ago. Twitching has always been a presurser for me...when my left arm and hand started to twitch, then weakness followed.

Since being on the Deanna Protocol, my speech, swallowing, and weakness in left hand has continued to digress. I have also developed weakness in my right hand fingers, although not nearly as bad as my left hand. Also, twitching seems to have increased slightly, no matter how much AKG I take. It's not horrible but still noticeable.

Another possible side effect is that I have started to lose weight, not a lot, but about 6 lbs so far. Before I started all the supplements I was maintaining my weight. To be honest I cannot eat like I did before so I'm sure that has an effect. Also, I tube all the supplements which involves a lot of water, sometimes I am sure it floods into my intestines before it's well absorbed.

How long is the average person on the protocol before they start to notice their progression slowing down?

Has anyone's progression actually sped up after they started the protocol? I know that seems far fetched but with this disease anything' possible!

Thanks for reading,

Joel

 

[dbltree]

Hi dbltree,
Please can you be more specific when you say “We avoid grains because they are inflammatory”. I’m very interested in your explanations as I wait for other sets of EMGs and my symptoms take me day by day to something that involves face, tongue, and throat. Can you tell me more about your diet, please?
God bless us!
Marcia

Grains/glutens contain Omega 6 which is inflammatory to everyone, not just PALS and it causes joint and brain inflammation.

We have many great links and information in the Diet thread on Winning the Fight to help PALS decide what is right for them.

ALS is not unlike cancer, individuals may have aggressive/rapid forms of either and may or may not respond to treatment. Slowing progression or at least not exacerbating it is realistic but since ALS affects everyone differently it's impossible to compare.

Damage starts years prior to diagnosed but our bodies compensate at first until neurodegeneration picks up speed destroying more motor neurons and affecting larger areas of the motor cortex. At that point it's like having stage 3-4 cancer...tough to stop but most would take chemo/radiation in hopes of slowing the spread and increasing survival time.

Treatments such as the Deanna Protocol are no different, not magic, not a cure but if you understand the disease and what is missing, then explore the various items in the DP, then you understand why they have a positive effect in the battle to slow ALS.

I have put together a wealth of information on WFND to help put everything in layman's terms and give PALS a realistic view of treatment and why it takes 6-8 months to slow it down.

Assume nothing, do your own due diligence and research so you can make knowledgeable choices...

 

[jellis86]

Paul...you've answered one of my question as well, how long before any noticeable affects.....but I am curious as to why my twitching and weakness seem to be more pronounced?

Out of everyone on the protocol, has there been anyone to show no slow down after 6 to 8 months?

My problem is everything supplement wise has to be taken via tube. Each dose separate and then flush and repeat. So much water causes some to dump into the intestines and cause some diarrhea. I just weighed myself and I am 10 lbs down from 2 months ago. I eat what I can and tube formula, blends, and protein.

I am not on a complete paleo diet, perhaps I need to be. If I do it knocks out the formula the VA provides me as I'm sure it has stuff not good for cells.

 

[ANDMON]

Hi dbltree,
Thank you for your replay. I understand very well your point of view and I‘ll continue to search for different diets and try my best in finding more knowledge of this sickness .I asked about grains because I’m from that part of Europe where people eat lots of bread and I’m scared that I don’t know too many replacements for it (as in my culture is very clear: no bread, less weight) Sorry if I dare to ask you what’s the meaning of WFND? I appreciate your work and kindness and I hope that God will reward you if we (people posting here) can’t do it.
At the moment I’m very scared of everything what’s happening to me and even I tried to focus on my readings, my mind can’t comprehend the main ideas (although I’m a mathematician).This is the reason that I asked so many questions and maybe sometimes I looked little bit impolite and "stupid".
I wish you all the best you can get from this life.
God bless us.Marcia

 

[dbltree]

Jelli...most PALS experience positive effects from DP but commonly people expect a miracle in a few months and drop out...God may choose to cure someone but otherwise it's a knock down drag out battle against a foe that takes no prisoners. You may decide that fighting is not in your best interest but that's a personal choice only you can make.

ANDMON...WFND is Winning the Fight against Neurodegenraitive Diseases, search winning the fight deanna protocol for more info.

I love breads but I love life even more so meats, fruits and veggies are my new diet, that may not be possible for everyone however.