Nutrition in ALS

[BethU]

Let's not feed the trolls ...

[Maverick]

To summarize:

1) ALS is closely associated with oxidative stress and glutamate excitotoxicity. Glutamate excitoxicity is likely the result of oxidative stress, or at least exacerbated by it.

2) The polyunsaturated fatty acids and iron exacerbate oxidative stress. The PUFAs or their endproducts have been shown inhibit glutamate reuptake and kill mitochondria.

3) High cholesterol extends the lifespan of PALS. Saturated fat raises cholesterol, while the PUFAs lower it. Supplementing the diet of mouse models of ALS with butter increases their lifespan by at least 20%. It is possible to raise cholesterol in other ways, including increasing the consumption of fructose.

I am suggesting that PALS can extend their lifespan essentially by throwing out their cooking oil and breakfast cereal and eating a lot of ice cream. Since I am apparently the first one to suggest this on the forum, and since I have no credentials that would allow me to dispense advice without explaining my reasoning, I decided to provide ample justification. My attempts to post it in a more readable format were thwarted.

Offering people a way that they personally can control their disease progression is indeed offering hope. I cannot understand why drawing new conclusions from old data is counterproductive. I would like to see an objection to this suggestion that is not an argument ad hominem. I only have about a semester's worth of college biology, so it shouldn't be that hard.

[joelc]

My attempts to post it in a more readable format were thwarted.

Give me a break! The reason for not allowing the link is because of the reason I posted above. I did it because I did not want our members computers infected.
I am starting to get a bad feeling about your attitude and motives.

Change your attitude or find somewhere else to push your theories

[JamesMcC]

Lol ,I LOVE ICECREAM!!!!!!!!!

[rocmg]

maverick -- i think if you can summarize your findings in a way that is user friendly )like your last post) it would make much more sense to the users here. personally speaking, any complicated, convoluted stuff i have to print out and go through with a pencil and make notes otherwise it's too jargon-y, hard to understand and very frustrating. also bear in mind, posts that are too long are oftena pain in the proverbial behind for those forum users who type with one finger as it's tiring to scroll -- as rose once pointed out.

however, in relation to the point you were making, i have also read that high cholesterol seems to correlate with slower ALS progression. however, i think most PALS would be better off doing anything and everything they can to keep their weight on, rather than stressing out about what they should eat and when - at least until some credible source comes out in total support of the high cholesterol diet. i believe the murine models in the study you were referring to were fed lard, not butter. but the principal remains the same.

[GlenBrittle]

Originally Posted by JamesMcC

Lol ,I LOVE ICECREAM!!!!!!!!!

James ... Maple Walnut RULES !!!!!!

[Al]

Prailines and cream or heavenly hash for me.

AL

[hopingforthebest]

Maverick

Do you yourself have ALS?

My husband has iron overload disease (hemachromatosis) and two leading neurology university directors of ALS clinics in different states have told us that there is no direct relationship between iron overload and ALS. These studies are from 2009.

ALS has no treatment or cure at this time. We have read, tried and researched exactly what your articles are saying and the disease still progresses.

We are all waiting and hoping for a cure to this beast of a disease. Most of us are connected to ALS clinics and get clinical, medical up to date information from our trusted medical physicians that work each day also hoping for a glimmer of getting closer to a cure.

Thank you for time and concern but we are all a very tight close group of ALS patients and caregivers on this forum that just want suggestions for getting through "today" and hoping for a tomorrow free of this stinking disease.

Patty

[Maverick]

I don't have ALS. I worked with people who did in the AAC industry. I was struck by how poorly they were served by the healthcare system.

The mouse models were indeed fed butter. It makes a difference, as lard has a lot of polyunsaturated fat.

You are are right about the cholesterol. The finding that cholesterol is protective isn't well supported because it came out last year. I have found one related study, which concluded that statins don't shorten the lifespan of PALS. Time will tell on that one. In any case, raising cholesterol is not the only justification for replacing polyunsaturates with saturates.

Searching for "iron als", I have found only one study from 2009 regarding iron on pubmed.

J Neurosci. 2009 Jan 21;29(3):610-9.
Dysregulation of iron homeostasis in the CNS contributes to disease progression in a mouse model of amyotrophic lateral sclerosis.
Jeong SY, Rathore KI, Schulz K, Ponka P, Arosio P, David S.

Centre for Research in Neuroscience, The Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.

Amyotrophic lateral sclerosis (ALS), characterized by degeneration of spinal motor neurons, consists of sporadic and familial forms. One cause of familial ALS is missense mutations in the superoxide dismutase 1 (SOD1) gene. Iron accumulation occurs in the CNS of both forms of ALS; however, its contribution to the pathogenesis of ALS is not known. We examined the role of iron in a transgenic mouse line overexpressing the human SOD1(G37R) mutant. We show that multiple mechanisms may underlie the iron accumulation in neurons and glia in SOD1(G37R) transgenic mice. These include dysregulation of proteins involved in iron influx and sensing of intracellular iron; iron accumulation in ventral motor neurons secondary to blockage of anterograde axonal transport; and increased mitochondrial iron load in neurons and glia. We also show that treatment of SOD1(G37R) mice with an iron chelator extends life span by 5 weeks, accompanied by increased survival of spinal motor neurons and improved locomotor function. These data suggest that iron chelator therapy might be useful for the treatment of ALS.

It appears that iron overload is well established in ALS. Please point me to the contrary evidence, as I couldn't find it.

The diet is not particularly stressful or limiting. It is certainly easier than vegetarianism or eating organic, which plenty of people find worth the trouble. Just because it wasn't suggested by a neuro doesn't mean it doesn't make sense. And believe me, it is easy to keep your muscle mass up by eating ice cream.

Thanks to those who comment constructively.

[patricia1]

My cholestrol have been as high as 360 and i hav als 9 yrs

[BethU]

Constructive or not, I don't think you quite get the picture of what ALS is all about. That's the problem with "one diet cures all diseases." (Someone once on the Myasthen Gravis Forum was pushing some product to "bulk up your immune system." What was wrong with that picture? MG is an autoimmune disease, and the cure ... and it can be cured ... is to put the immune system to sleep with steroids to stop the overreactions.)

Suggesting that we leave our cereals behind and eat ice cream is terrific. In fact, I've been doing just that ever since I became unable to eat anything else. If ice cream is going to cure me, I'm way overdo for that "get out of jail free" card. You do understand that PALS become unable to eat and swallow most foods eventually, and thus probably consume more ice cream per capita than others, don't you?

And ... keeping up the muscle mass with ice cream? Excess calories do not convert to muscle ... excess calories are stored as fat. But that's OK in ALS ... the point is to maintain your weight, and the only way to do that when your muscles are dying is to gain fat.

Steroid to bulk up dead muscles? I don't think so. I'm sure people with heavy musculatures lose muscle strength more slowly than those without, but the process is the same. In ALS, muscles die. You can't bulk up a dead muscle.

It's great that someone is interested in ALS and finding a cure. But your suggestions suggest a lack of real understanding of the nature of this disease. And these are old, worn-out ideas. The fact that you are "sure in your own mind" that this works really isn't going to convince anyone, especially since you seem not to know the basics of ALS.

If you're sure about this, go out and prove it with a controlled study. (What grade did you get on that paper, by the way?)

[Al]

There was a study out of Toronto that found that statins DID accelerate the progression of ALS. It's in our archives if you'd care to look. The paper was published in late 07 or 08.

AL.

[GlenBrittle]

I hope there are no statins in ICE CREAM ...

AL , pralines & cream is a good flavor too. Especially in a sugar cone ....

Hey Mav , you like Ice Cream ?

[joelc]

It has to be Rocky Road - and I don't care if there are statins in it! LOL

[GlenBrittle]

Never tried Rocky Road ... its the chocolate thing - triggers migranes.

I used to inhale DQ soft ice cream. Since the dx , I have been trying to keep away from the chemicals as much as possible , which means no DQ.

I snuck in a quick small cone the other afternoon and almost gagged on it.
I could not believe that it tasted so terrible.

Of course , when Wanda reads this ... I will hear about it ...