BirdmanTwo's Incorrect Information

I just want to let anyone know that may have read It that BirdmanTwo's Information about ALS was incorrect. ALS, unfortunately, is an autosomal dominant gene which means (without going into all the scientific mumbo jumbo) that if EITHER of your parents had it, then there is a 50/50 chance it will be passed on to you. It is NOT a disease that is passed on from only mother to son or from father to daughter. that is 110% BS. Sorry. Also the part about his going into remission because of his diet it 110% false. There has never been even 1 DOCUMENTED case of someone being cured (or going into remission) of ALS. I am not trying in any way to be cynical or anything like that but to give people false hopes of being cured of Lou Gehrig's Disease by simply changing their diet really angers me because Just about everyone in my family has died from a familial form of ALS and I Know a little bit about it :( People who speak when they have ABSOLUTELY NO CLUE and give those who are suffering False hopes REALLY tick me off!!! This person who makes these claims is either misdiagnosed, uninformed, or just plain lying. Thanks.

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You may have been a bit harsh with Birdman, I'd characterize it more on the level of wishful thinking. I do however totally agree
with your asesment there is no documented scientfic evidence to support any anecdotal claims that ALS can go into remission.
Ever since this nonsense about the benefits of "coconut oil" surfaced I've been attempting to drive this point home and may have well been talking to a brick wall. Sadly, the "what have I got to lose?" counter argument is the last refuge of irrational thinking born
unfortunately out of desperation. Hope is one thing, but at the risk of creating false hope in my opinion, is inexecusable.

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I agree with sumdude007 and I do not think he was being too harsh. I also have a form of familial ALS and cared for my grandmother , mother and sister when they had it. A diet high in animal protein is the only dietary advice with real evidence for slowing down the disease. There is no cure, though some people live with it a long time. Steve Jobs and a dear friend of mine both died of cancer because they believed in the raw diet BS. We have to cut the miracle food fantasy out of any real discussions about dealing with this disease.

A word of advice from my own experience is that it is important to keep moving. Exercise has really helped me slow down symptoms.

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I'm somewhat confused, amandhats. On one hand you're agreeing with sumdude and on the other something about "animal protien"
slowing down the disease? I'd be curious to know where you derived this evidence.

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I see a nutritionist at the Virginia Mason ALS Clinic in Seattle. My sister worked with the team at the University of Washington ALS Clinic. Both clinics recommend eating animal protein. When you eat animal protein you are feeding your muscles that are being starved by a lack of protein, according to them.

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Makes sense. I'm sure sufficient protein is necessary and a lack therof would affect anyone's muscles whether or not they're ALS
patients.

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Yes, any serious body builder will tell you to eat animal protein to gain muscle mass.

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PS I try to eat 9 ounces of animal protein a day as prescribed by the VM Nutritionist.

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Amandahats: Actually, protein is protein is protein and the body can't tell the difference where it's obtained. Certain vegetables and supplementary nurtional drinks are also a source. Moreover if an ALS patient is meeting the daily protein requirements there
is no evidence to suggest it would "slow" the progression of the disease.

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Dear mike405; My nutritionist at the Virginia Mason ALS Clinic in Seattle argues for animal protein. I trust her sources.

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From what I understand you need a complete protein, which animal protein provides (along with B12, which you can't get from non animal sources - unless you take a supplement). You can get a complete protein from non animal sources (vegetables, grains, beans and legumes etc) but you have to know what you are doing and combine them in the correct ways. You need all seven amino acids to make a complete protein. Quinoa is the only grain which has all seven but you still need to make sure you are getting enough B12 from other sources if only eating non animal protein sources.

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JuWilli: I have printed out your remarks and will share them with the nutritionist at VM. I also take a B12 supplement.

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My family also. Currently have two people with active ALS. Father and Uncle, 63 and 62. We are SOD1 G93a. We live in michigan and california. Does your family have the same gene?

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I have not been a member of your discussion group, however I have followed your discussions over the past & have found them quite interesting and informative.
My mother died of ALS in 2008. She had it for about 2 yrs that we can now figure out. She was diagnosed at a late age, in her 80's. She had bulbar ALS, which as many of you know, progresses at a different rate, or so it seems.

I now have a friend with ALS who aquired it at a much earlier age and is just going through the beginning stages. I want to help her and have followed some of the recommendations I have read about from this site. My thought is that if one can increase the immune system in any way, it cannot hurt and may help. Any thoughts on that?

Also, I was a bit confused with the post given about a 50/50 chance of aquiring ALS if a family member has had it. I was under the understanding that there are 2 types of ALS: Familial and Sporatic. The only way to figure out if you carry the gene is to have a test, correct? Then what happens to those remaining family members who had loved ones who were diagnosed with "sporatic" ALS? Are their family members now put into a different category and now considered "Familial"? That makes no sense to me.

I don't think I want to know if I carry the gene. It is what it is. I will look forward to your responses.

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Fraulibby,


We are so sorry to learn that your mother’s two year journey with ALS came to a close and can appreciate your questions related to the inheritance of ALS and the role of the immune system in ALS.

In general maintaining good nutrition will strengthen your immune system, helping to prevent infection. Many people ask questions about vitamins and nutritional supplements for those diagnosed with ALS. At this time, there is not clear medical evidence that vitamins or supplements can help ALS. There is growing thought that one or two vitamin E capsules daily may be beneficial in ALS. Most vitamins/supplements can be taken safely for the purpose of enhancing general good health if taken in the recommended amounts. There is active clinical interest in this issue but no clear recommendation yet. Refer to your physician, dietitian or nurse for specific recommendations.

With regard to the immune system’s role in ALS, inflammation is part of the immune system’s reaction to invading microbes or tissue destruction. The impact of the inflammatory response on motor neurons and nearby support cells has been a focus of several investigations. You can read more about inflammation and ALS on The ALS Association’s Website here: http://www.alsa.org/research/about-als-research/inflammation.html.


The majority of patients with adult-onset ALS (90%) have no family history of ALS, and the disease presents itself as an isolated case. This is called sporadic ALS (SALS). Although there is likely a genetic predisposition involved, SALS is not directly inherited in a family.

The most common inheritance pattern for familial ALS (FALS) is called autosomal dominant. Autosomal means that it is equally likely that a female or male would inherit the gene mutation for FALS because the gene is located on a numbered chromosome that both males and females share in common. Dominant refers to the fact that a person only needs one gene to have a mutation coding for FALS to have an increased risk for ALS. So someone who has FALS would have one gene with a mutation and one gene without a mutation. Therefore, a child born to someone who has FALS has a 50% chance to inherit the FALS gene mutation, and conversely, a 50% chance to not inherit the FALS gene mutation. The 1 in 2, or 50% chance, comes from the fact that parents randomly pass on only one member of their gene pair, so that either the gene with the mutation will be passed on or the gene without the mutation will be passed on. It is also important to remember that inheriting the gene for FALS in no way guarantees that a person will develop symptoms of ALS. If a child does not inherit the gene mutation for ALS, they cannot pass it onto their children http://www.alsa.org/about-als/genetic-testing-for-als.html.

Recently, researchers discovered a unique mutation (C9p21), a short DNA sequence that was repeated many more times in people with ALS and frontal lobe dysfunction, called frontotemporal dementia (FTD). In addition, this repeat in the C9ORF gene was found in some patients who did not have a family history, and thus would be considered SALS. The C9ORF findings might contribute to the development of ALS in some--but not all--of the sporadic ALS cases. This discovery expands the number of potential drug targets for future therapy. See additional information regarding this recent finding here: http://www.alsa.org/news/archive/9p21-abnormality.html.

The ALS Association

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Thank you for your explanation and web sites to further my knowledge. I appreciate your rapid response.

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Amandahats:

I have Parkinson Disease, not ALS, but there may be parallels so I read posts here because of the possibility that something will be said that has enough credibility that I can pick it up and run with it and because some friends come to this site too. There have been lots of facts that are credible enough but the problem is that they aren't offering anything proven on the plus side. Hope does spring eternal though.

I'm confused about something you said about Steve Jobs and your friend. I read your words, I believe, saying that both these people avoided protein and if they had eaten protein they would not have died of cancer. That is simply not true. I wonder if you meant to add something else to your statement because as it is it is false.

Furthermore, you talk I think about the slowing of the progress of the disease based on food or supplements or both. Is there factual evidence to back that up? You seem to be deeply involved in the dietary aspect of fighting your disease and that can't be bad, as far as I know. I don't have time to spend doing that. But its not really fair to people who might take your words to be gospel only to be shattered when they realize its not the case at all.

The grain you spoke of, Quinoa, sounds interesting. If I remember, I'm going to check it out.

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