Old 11-23-2005, 11:12 PM #1 (permalink)
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Default Should I tell my Son?

I was just informed today that my 28 year old son's biological father is dying momentarily of ALS. Should I tell him? Does he have anything to gain by knowing that he has inherited this disease. I am concerned that he is into muscle building and follows the "body for live" regime. Could the protien powders that are a major part of his diet increase the onset of ALS. I have a million questions and dont know where to begin.
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Old 11-24-2005, 01:07 AM #2 (permalink)
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Hi Judy. How do you know if your son has inherited ALS? It is only familial in 5 to 10% of the cases. Has he had any gene testing done? You might want to tell him because he just might want to spend time with him. I have no idea what their relationship is like but it should be up to him at 28 years old to decide if he wants to see his dad.
I don't think any of the body building proteins will increase the onset of ALS but some of the others may have more to say on that subject. I know some of the others use Creatine as well as Whey powder to try and maintain what muscle that is left. Hope this helps ease your mind. Take care. Al.
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Old 11-24-2005, 06:09 AM #3 (permalink)
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Thank you Al for positive response. I should mention that his grandfather also died of ALS. My son never new either of these men, and therefore have no other family history on any genetic diseases. I want as much information to pass on to my son but dont want to alarm him with this news unless absolutely necessary.
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Old 11-24-2005, 10:28 AM #4 (permalink)
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Hi Judy,

Sorry to hear about your dilemma.

That's the problem with this brutal disease - no one can give any definitive answers because no one really knows.

I don't know if you will be able to find any resources that can answer your question whether or not you can do anything to stave off the onset of a familial form of ALS.

That's a tough call whether to advise your son now - as there is still no certainty that your son will get it.

In a lot of ways "ignorance is bliss" when it comes to ALS. For several months I just thought I had carpel tunnel syndrome - a minor inconveniance. Then after some tests - bang! - my whole life turned upside down after I was told I have ALS. Even though not much had changed from practical point of view - I felt like the whole world had been pulled out from underneath me and that I was free falling.

Positive attitude is everything when dealing with ALS. Although everyone and their third cousin has a theory about how we should be treating ALS - no one can really say for sure if it makes any difference. So sometimes I wonder if I would have been better off not knowing for as long as possible. Although I suppose I would have been a little freaked out wondering what was going on with my body.

As for the protein drinks - I believe that they are all quite high in MSG listed by a variety of names (eg. soy protein, hydrolized proteins).

See this link (courtesy of Jerry Story):

http://www.truthinlabeling.org/hiddensources.html

Although there is no scientific evidence directly linking MSG with the onset of ALS - MSG and other glutamates seem to have some role to play in the disease and it appears that they are best avoided by PALS.

If your son is health conscious you may suggest he avoid these protein drinks due to their MSG content for general health reasons without going into ALS.

You might also want to suggest he avoid processed foods and foods subject to a lot of pesticides (apples, grapes) - and try more organics where possible.

Will this make any difference? Who knows - but how can you lose by eating better.

Good Luck!

Richard
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Old 11-24-2005, 08:41 PM #5 (permalink)
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Default Re: Should I tell my Son?

[quote:6a7b02cd65="Judy"]I was just informed today that my 28 year old son's biological father is dying momentarily of ALS. Should I tell him? Does he have anything to gain by knowing that he has inherited this disease. I am concerned that he is into muscle building and follows the "body for live" regime. Could the protien powders that are a major part of his diet increase the onset of ALS. I have a million questions and dont know where to begin.[/quote:6a7b02cd65]

The probability is low.

But I am skeptical of such a thing as inheriting ALS. I think more likely one inherits a predisposition to the disease. In either case, your son has much to gain from this knowledge (assuming it's true, which it probably is not). To be forewarned is to be forearmed. The disease can be stopped or at least greatly slowed down and the sooner one starts the better.

Beware of protein powders. Glutamic acid is bad for ALS. Also a high protein diet is not good for ALS. Read Blaylock.

Eat or drink yer flavonoids. Read Blaylock's books to learn about flavonoids. Major mega-powerful stuff. A whole new horizon in the science of nutrition, only fairly recently discovered.
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