question about supplements

[Rhonda]

I was diagnosed in June this year and I have probably read to much. I would like to know if there is any supplements any of you would recommend and if there is anything you can do to help you have more energy. Does anyone that can exercise on a regular basis and do they notice a change in how they feel? Right now my speech and right arm
is what is affected. Went to clinic last Friday and everything else seems to be good.
I have read alot on this forum and I want to Thank all of you for your support to all of us fighting this disease. Even though it's been around 6 months since being diagnosed it's
hard everyday for me not to give in. I left my job of 20 yrs. Sept. 29 and it seems like I am lost there's so much I should be doing and I just don't. I'm 45 and a mother of 4
ranging from 17-26. I have tons of support but as you know it's tuff to lose what you have always had. Today I went and picked up my 3 yr. old grand daughter from daycare
and when I got home I could not undo the carseat for her to get out thank God my son was with me. It takes all you have not to go insane. Sorry I didn't mean for this to be so long just got to typing and counldn't stop.
Rhonda

 

[Al]

Hi Rhonda. We all know exactly how you feel. Once you get on a roll it is hard to stop sometimes and we've all been there done that. Are you on Rilutek? If you do a search on CoQ10, Vit E, Creatine and Vit.C I think you'll find information and some of the other supplements as well that some of us take. The thread search above is the place to look. AL.

 

[Rhonda]

Hi Al,
Yes I am taking Rilutek and thanks for the info.

 

[MtPockets]

Gee thanks Dan for bringing back up the useless information found on Eric's site, in my personal opinion, it is a scam. Everyone should make up their own minds as to what type treatment they will use, but I personally would never spend one penny on any of these sites that promise false hope, when there is no cure for ALS.

Rhonda please do a search above about Eric and his so called cures for ALS, before wasting a lot of money. Here is just one of our members quotes from the search:"

Most PALS, when first diagnosed, will look for whatever hope they can find. If you look back to the start of this thread, you'll see I went through that phase as well.

The thing you have to understand about Edney and people who follow his regimen is that they reject Western medicine. They believe, and I think sincerely, that medical doctors simply are not able to accept alternative healing methods. And you must admit, there is some truth in this. But that's a far cry from arguing that a detoxification regimen can "cure" ALS. There is simply no evidence to support this claim.

A disease such as ALS, with no real cure, can cause people to become vulnerable to those who offer hope- even false hope. It is hard to resist the siren's song. I do it by using the common sense God gave me. Others must choose their own path. I refuse to see myself as "dying from" ALS; I see myself as "living with" ALS, the best I can each day.

As you can tell us PALS get upset when people try to get $$$$$ out of our pain, misery, and suffering from ALS.

Don't take my word for it do the search and see what others have learned from spending their hard earned money on such vampire sites, that prey on the sick, and on those hoping for anything to hold onto. Beware of the scammers out there who want to just take your money and make all kind of false promises.

THERE IS NO CURE FOR ALS.
Rilutek is the only recognized medicine that may prolong you life for some time. It also does not hurt to take the CoQ10, Vit E, Creatine and Vit. C., or B-12.

One of the problems with exercising is that the muscle tissue is what is wasting away and will not be replaced if it's broken down by exercising. I know that sounds weird, but Many of us do not exercise but do try to stretch and maintain flexibility to some extent. But definitely no weights, running, treadmill, etc. Not good with ALS.

The comments at the top above, are not directed at you Rhonda, but at those who it seems come on this forum about ounce a month just to drum up business for some pie in the sky site, that ends up hurting our people over the long run.

We are here to help others go down the road we have already traveled and avoid the potholds if possible. I hope this has helped some. Feel free anytime to jump in with any more questions.

God Bless
Capt. AL

 

[Mike27]

Hi Rhonda,
I have to agree with Capt Al, be very viligant with web sites or people who make the claim tht they can cure ALS. There's a lot of folks out there who will have no problem separating you from your money no matter what the situation.
I always use as a rule of thumb, whether or not the "cure" is listed in a recognized medical journal. (New England Journal of Medicine, for example)

Back to your question, when I was first diagnosed in '93, the Neurologist I saw recommended massive amounts of anti oxidant vitamins. He said (at the time) there was a 'school of thought' that they may aid in ALS. (Mopping up any excess free radicals in my system) He recommended that because there was/is no cure. (YET!) The vitamins are pretty much what Al said. Here's what I take:

Vitamin C-3000 mg;
vitamin E-1600 IU; and
beta carotene-50,000 IU.
These are daily doses spread all through the day, not all at once!

As I read and researched, my regimen took on a few more vitamins. There are many anti-oxidants on the market, so you must do your homework.

I’ve since added:

1 daily low dose aspirin;
triple fish oil-3000 mg;
flax oil-3000 mg;
vitamin B complex;
Co enzyme Q10-300 mg; and
vitamin B12-3000 mcg (sublingual).

I know this seems like a lot of pills to take every day, but you get used to it!

In terms of exercise, just listen to your body and don't over do it. Fatigue is a major factor with ALS. Swimming or aqua-aerobics is a good way to go. Less impact on the joins and tendons and no fear of falling and knocking your self out! (Experience...:wink: )

Cheers!

 

[CindyM]

Hi Rhonda! You've started a good discussion here about supplements. Thank you for that. I know how you feel about having you muscles trip you up once and awhile. I am visiting my grandchildren this week and keep forgetting how much muscle I have lost in my hands. The car seat thing gets me every time, as does opening anything my grandson gives me, and picking up the baby. I can pick her up (Nora is 6 months) but holding her for longer than a minute is out of the question as she wants to stand, not sit, on my lap. So I have to put her down quicker than she likes. Bummer! But I can still give plenty of kisses and tickles! regards, Cindy

 

[liz]

Rhonda -

I first experienced symptoms in 11/04 (right hand/fingers). I have always swum for exercise and I continued swimming (usually 1 and 1/2 miles 3 to 4 times a week) straight thru to this fall when I just started noticing new symptoms (left hand/right foot) which ultimately led to diagnosis in 11/06. I have continued although at a less rigorous pace (dropped to 1 mile 3 times a week). I cleared this with the docs once I got my diagnosis. I believe I am functioning better overall due to my fitness level and I still feel strong in the water. I notice that the strength and coordination in my right leg gets worse if I take too many days off in a row from swimming. I also think it is good to keep up with the cardiovascular benefits for as long as I can.

Liz

 

[Meg1]

PALS carry abnormal amounts of toxic heavy metals in their systems and it is believed that these metals play a factor in the pathology of ALS.Dan

I just wanted to point out that there is no medical evidence at all to back up the above statement.

 

[Bill60]

When I was first diagnosed, I changed my whole lifestyle, I began going to a nutritionist every week and he put me on handfulls of suppliments. I began eating really healthy, juicing, no junk food. I spent my days doing research online, reading everything people like Eric had to say. Ten years later, I think it was mostly a waste of time and alot of money. There are sadly horrible people on the Internet who prey on the desparate and vulnerable, like I once was. Apart from a miracle from God, there is no cure for ALS. However, I do believe we should take suppliments, even if they don't help the actual disease, they will strengthen the immune system and help us fight colds... I am not a believer in strenuous exersise for people with ALS, from what I've seen, I think it does more harm than good. I do think daily range of motion workout is helpful.