Old 03-16-2017, 02:39 AM #1
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Arrow Preventing fals from kicking in?

Hi everyone!

I am Anna and I am 26years old from Sweden. I have recently lost my mom to Als and know that we have fals in our family. I have not done the test since it can only confirm if you have the desease but not that you don't. But I have read a lot about what might trigger/cause ALS and I thaught I'd discuss this with you guys. Have you taken any precaution in how you live your lives or what you eat? I have read studdies suggest vitamine E and the kind of fats that are in fishliver oils might be good, and that lead, other heavy metals and smoking is bad. And that a low bmi might be a risk factor and is more common for men to develope the desease than for women. Do you guys have any other tips or theories that you live by?

Also I experience a lot of stress at work and I reacently came to think that this might also be a bad thing that could possibly trigger the decease. So I am doing a lot of meditation now and trying to handle these stress levels.

How do you reason about the theories that excercise might be a bad thing? I go swiming three times a week because that makes me feel good in general but I don't go to any extremes with the excercise and make sure to keep some healthy fat on my body to.

Or do you think it wont matter how you live your life if you have the gene? I personaly am thinking there could be a risk of triggering the decease, but also that some genes will trigger the decease at a certan age no matter what. My mom lived a super healthy life before she developed the decease at 60 but she was rather petite and might have eaten more fish than others and breath some more heavy metals since she biked her way to work, although in a smaller city. It is hard to tell I suppose. If I could live until 60 i suppose that would be a victory in itself because even though she felt very young when she past she had been there to see her child grow up and lived a rich life.

All the best and fingers crossed for science!
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Old 03-16-2017, 07:02 AM #2
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Default Re: Preventing fals from kicking in?

Hi
I am very sorry about your mom and the rest of your family.

First do not let FALS steal your life before it needs. Live fully and happily. You do not even know whether you carry the family genetic defect. There is a fifty percent chance you do not.

Also FALS tend to strike at around the same age to a few years younger than the previous generation so you would likely be safe for the next 25 years or so even in the worst case. There will be a cure by then for the common genetic forms I am sure and likely for everyone.

No one knows how to prevent it. Smoking does raise the risk for ALS and is bad for you anyway. Men get ALS more frequently when it is sporadic but not true for FALS

Vitamin e A large population based study found lower rates of ALS in those with high vitamin e intake. It was not specific to FALS and it was retrospective not a controlled study. One ALS specialist told me all gene carriers should take high e another said don't. Vitamin e is not without risk.

Weight- a study showed PALS with bmis close to 31 progressed more slowly. Should you have a bmi now of 31? I doubt it would help and it is otherwise unhealthy. MAYBE when you are in your fifties let it drift up a little. Maybe. Keep a nicehealthy weight don't stress your body by being too thin or too heavy.

Exercise- oh how controversial! Some people think heavy exercise is a risk factor but something like swimming three times a week for health and stress management? Go for it. And anything not extreme. Maybe don't do triathlons?

Managing stress can only be good for you so the meditation sounds great.

Avoiding heavy metals is good for everyone.

This is all my opinion of course though the e and the onset age is from ALS experts. Hope this helps.

Wishing you a long and healthy life
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Old 03-16-2017, 04:38 PM #3
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Default Re: Preventing fals from kicking in?

Thank you so much for taking the time to write this very hopegiving and thorough reply Nikki! It really warms my heart that you'do do this for a stranger on the Internet.

I agree that it is best to live in the present and that no one should allow an uncertain future to disrupt the present life. I will try to find a good lifestyle after reading up on this and then try not to think about it so much.

I really hope that we will find a cure for all forms of ALS realy soon so that everyone can be cured. And I wish you too a long healthy life filled with love.

Varma hälsningar, (warm greetings) from Sweden,
Anna
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Old 03-16-2017, 06:16 PM #4
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Default Re: Preventing fals from kicking in?

You are welcome. We are not strangers but sisters in FALS.

Thank you for your kind wishes
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