Well Meaning Friends Cure Ideas

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Montana Carol

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What do you do with well-meaning friends who want you to try so-called miracle cures? One friend wanted me to buy her (expensive) vitamin package, and now I've been sent a CD with a testimonial by a triathlete named Ron Kline who claimed to have recovered after being almost disabled by ALS, and several other PALS as well. The friend who sent this CD has lost FIVE family members to ALS and is undoubtedly fearful he'll get it too. I don't want to try this cure -- I think it's some kind of magnet thing that goes in your shoes, the description was vague -- but I don't want to diss my friend either. What can I do to let him know I appreciate his intentions but don't want his damn cure? Carol
 

Al

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I had a friend and a few others tell me that they had vitamin cures. I simply asked for written proof from a reputable medical journal that the stuff worked. Never got it because there is no proof anywhere that any of that stuff works. If the stuff is so darn good tell them to buy it using their money and you'll pay them back in 6 months if you are better. First they won't use their money, second, sadly you won't be better. Or you can refer them to our scamwatch section. I'm sure they'll recognize their product.
AL.
 

Rae Ellis

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Tried it all!

My husband has been diagnosed with PMA for ten years. The doctors suspect he had it for awhile before he realized it...just thinking the symptoms were part of getting old. During this time(especially the first few years), believe me, we have tried anything and everything that we have heard about or that has been recommended by friends. Nothing has worked. Some of the stuff has even made him sick. We just ended up spending lots of money and time. Jim's PMA is very slow progressing. One doctor told us he thought it was because he was so athletic before he got sick and had so much muscle mass to begin with. Who knows, we feel blessed that it hasn't, as yet, turned into ALS. The doctors in Denver said if it didn't in two years, it wouldn't; our doctor here in Phoenix says it can become full-blown ALS at anytime. We chose to believe the U of Colo. docs. We just live one day at a time. Trying to eat healthy and for him to do anything he can without tiring himself, which now is almost nothing. We trust that if and when a real cure comes along, we certainly will hear about it through the doctor's and wonderful sites like this one. I am brand new to the site and love reading the threads and realizing we are not alone. We've been battling this for a long time and I have learned that fear of what might happen is lots worse than just crossing each bridge as we come to it. I do have a question...has anyone experienced severe pain behind your eyes? This is a new thing that is happening this week. God bless you. Rae
 

brooksea

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Carol,

We had a friend that pressured my husband about stem cells and some other injectable concoction. I even went so far as to call the doc in Mexico! What a joke!

Finally I had to gather info to refute the stem cell stuff, etc...That shut him up. Now if I could just get my SIL to quit sending him mega vitamins and minerals. I'm running out of room to store them til they expire! LOL
 

Lillie

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Just the other day I threw away over 30 bottles of outdated "cures and treatments" - prescription drugs, supplements, vitamins, and herbs that were gathering dust and getting old in my kitchen cabinet. All of them were suggested to help slow progression, and of course when you don't know better you feel like you have to try anything, no matter how expensive.

I'd love to have the $$ back that we've spent the last 6+ years on stuff like this. When a real cure or treatment comes along, everyone will know. I held out hope for years that "just maybe this (supplement) is what is needed to slow things down". Suprise-suprise, it never was.

Keep your money don't let them make you feel guilty because you're not going to try their "cure". And tell them what Al suggested - "If the stuff is so darn good tell them to buy it using their money and you'll pay them back in 6 months if you are better". I wish I had thought of that line years ago.
 

Montana Carol

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Thanks, Everybody.

I just read about the lithium study on another thread. I guess I'll tell my friends thanks, but I'm gonna see if I can get on lithium and see what happens. If nothing else, they'll feel like I'm doing something, which might make THEM feel better.:)
 

brooksea

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You can tell them since you are starting Lithium treatment that there is the potential for supplements to interfere with Lithium absorption. i know there are some foods, etc that do interfere. Don't know exactly which ones though.
 

givenin

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b.c.
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salmon arm
givenin

I have to remind myself that these people are trying to help and with the best of intentions But some of the ideas were so outer space it just boggles me they would even suggest it, from going to a small village in China and having a hole drilled into your head to sheep stem cells injected into your butt to asian vitamins and on and on, my good neighbor brought over a mail mag that has all your cures are in you kitchen cabinet saying he new all about ALS and there was a cure in it so read and return please and hoped my husband would get better soon, I can only hope he doesn't waste his pension income and buy the book. At one point I was so fed up that a family member asked why I was being so negative and didn't I want him to get better! What I say now is that we are putting our funds and hope in another direction and if that doesn't work we will think about their idea and thank them.

My Mantra is....they mean well, they mean well, they mean well,....
 
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