Old 10-14-2017, 06:22 AM #1 (permalink)
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Default Vitamins/supplements to slow progression?)

Hi, in various threads i noticed that some of you swear by vitamin D, or other supplements.

Could you please share some that you are taking? Are you taking it per dr prescription, or after doing your own research?

Thank you very much!
Anna
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Old 10-14-2017, 06:40 AM #2 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

ALS Supplement Wiki
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Old 10-14-2017, 07:39 AM #3 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

Inventor's resource is amazing. Thank you again for doing it Riku

Worried, you are correct many of us take supplements. In my case I researched and then discussed with my neuro who is supportive of supplements. Not all neuros are.

You need to check for interactions and side effects. You also need to let your dad decide on this. When you look there are many things to try- no one can take them all. Even what seems initially like a manageable list can become burdensome. I felt like I was always taking something and felt a little queasy at times until I cut down the number.

Ask your dad if he has interest in this. If he does you can offer the info and let him decide how much is reasonable for him.

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Old 10-14-2017, 09:43 AM #4 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

The vitamin program that I was put by ALS Canada Neurologist I find very good, I have listed here I believe under supplements. I recommend it as I have been on it for about 4 years and very little advancement.
Al

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Old 10-14-2017, 11:09 AM #5 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

I found Riku's post! Thank you so much! And thank you, Riku.

Coincidentally, my husband was just in Aalto last month. What an amazing city.
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Old 10-14-2017, 06:07 PM #6 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

My husband started taking Protandim after having had an extremely fast decline with ALS. His decline sloped off dramatically after starting Protandim. I have no idea if he would have plateaued at that point, anyway, but the two events happened close to the same time. I buy it on Amazon.
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Old 10-14-2017, 07:42 PM #7 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

I think the first thing to do in any program is test for deficiencies and correct them. I corrected a sluggish thyroid with iodine, corrected free copper with zinc and corrected low Vitamin D with 5,000 IU a day. When I cut back my D levels fall quickly. My recommendation would be to get all your minerals and vitamins tested first, then correct deficiencies. Next, develop a plan for supplementation and diet to reduce inflammation and support your brain.
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Old 10-16-2017, 12:28 AM #8 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

Thank you, Al, as well. I found the post where you tell your regiment. I also gave my dad the list of all supplements and your discussions on those. He seems very interested. I think the best is to do it with the dr supervision, so he said he will first research the list and then ask his NW dr for his recommendation.
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Old 10-17-2017, 01:39 PM #9 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

I started reading more from Riku's work. Are you a scientist or a doctor, Riku? I know there is a lot of ALS research going on in Finland. That'S a good place to be...
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Old 10-17-2017, 02:02 PM #10 (permalink)
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Just an ordinary reactor physicist with too much time. I have just collected data avoiding own conclusions.
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Old 10-17-2017, 02:36 PM #11 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

Wow, I suspected some physics or chemistry background. I am a computer scientist with very limited biochemistry background, so it will be much harder to learn about what's known about the disease.

Incidentally, we lived in Oulu for 1 year I thought it was the best country in the world! Are there a lot of drug trials going on in Helsinki/Tampere/Oulu? Sometimes we are thinking of going to Finland again, I wonder if the ALS care or the chance to do trials in Finland are better/higher..
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Old 10-17-2017, 03:05 PM #12 (permalink)
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Default Re: Vitamins/supplements to slow progression?)

The trial scene sucks due to lack of ALS clinics. There is no connection between patients and the research world - something our organization alstuttu.org is working to change.
But the palliative care is excellent. I pay nothing for the 24/7 home care - in fact the hospital pays me for using my house.
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