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vzandt

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Slow progression. That would be my conclusion. I don't believe anything we are doing is making it slow. I believe that it is what it is and maybe we can manage symptoms as they come along. At least I hope we can. If I really thought something would help slow it more id do it.. but I haven't seen anything at all that I personally believe in. Yet.
 

pearshoot

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correct slow progression. know you will never admit of slight possibility something will help. cannot prove it is but you cannot prove it is not so it appears to be draw. recent als handout indicated if you remain active with a social live with friends and family you can extend life expectancy one year. how can you extent life without being able to slow progression. 1. neuro, you are losing weight, take in more calories. pals, why should i you cannot slow progression. 2. neuro, your breathing is getting worse, stop smoking. pals, why should i you cannot slow progression. 3. therapist, you need to do weight and stretching exersise. pals why should i you cannot slow progession. you stated it is cruel to suggest you can slow progession but i believe it is cruel to state there is nothing you can do to slow it. bet there are others on this site besides kim and cherry and myself who are doing things they believe are slowing progression. have a good day
 

vzandt

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We do everything the Neuro or our gp tells us to do. I'm not going to believe some guy on the corner is going to give us a pill (that cost all of my paycheck) and that pill is going to make everything all better. I think it is cruel to tell people that if they spend x amount of dollars (money is not an object...you love them...of course yothink they are worth it)...of course you'll sell your house and car and everything else you own to get this pill. Oops sorry...my bad. It didn't work. Now you and your pals have no home. No transportation. No money to get outside help. Do you understand what I'm saying. Ive lived with my pals for almost forty years. He is a part of me and I cant imagine my life without him...but I don't want people using him because he is sick.
 

Ms. Pie

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That's the way I feel too V. My Neuro would have recommended that pill if it were true. She hasn't recommended anything except to say if she had ALS she'd take Rilutek because it was the only thing out there. If someone wants to spend thousands of dollars on vitamins and they think it works then God bless 'em. If someone is pushing it, then that's not cool. Mention that you think it works for you and let it go.
 
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johnnyliverpool1

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mr pearshoot,,,i think yr a bit of a plonker...in fact i know u r......now u cant prove you are not..johnny
 

sadiemae

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One thing that has been shown to slow progression and add time is having a high Cholestrol.

http://www.aan.com/elibrary/neurolo...ovid.com:/bib/ovftdb/00132985-200804170-00001

High cholesterol may extend lives for ALS patients

According to new research in France, elevated lipid levels can actually extend the lives of patients who with ALS, more popularly known as "Lou Gehrig's Disease."

The researchers discovered that ALS patients may live longer when they have a higher ratio of "bad" LDL cholesterol to the so-called "good" HDL cholesterol.

This is consistent with a previous study that showed that when mice with the disease were fed a high-fat diet, they survived longer. This should come as no shock since humans actually NEED cholesterol (even the so-called "bad" form of LDL) to survive.

"These results raise the question of using a fat diet for ALS patients," Meininger said, also questioning if use of cholesterol-lowering drugs such as statins should be discontinued for patients being treated for ALS.
 

Ms. Pie

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Unfortunately my cholesterol has always been perfect. I used to think that was a good thing. Weird.
 

vzandt

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My husbands cholesterol is high. Took him off his cholesterol meds when he got his diagnosis.
 

vzandt

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Hey...I may have slowed his progression:) and I feed him bacon and eggs.
 

kiwisally

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No joke, the first word I said was "bay co" for bacon! It's taken 55 years but finally a pay off.
 

nightwolf_mk

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Well, I don't know if it is false hope trying to do things that can (or appears to) slow down the disease. All I know is that we need hope. For some people this hope is the company from people around them, their family and friends. For others is the possibility of continue a "normal" life doing things like working or studying as far as it is possible and for some of us maybe is the belief that this kind of things such as exercises, vitamins and supplements are doing something good. All I know is that I need something to live for. If it is this belief and hope , so be it, even if they are false. At least this will help my mind, spirit and maybe my body to cope with the disease.
 

Wings

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sam I agree and I am now researching into rattle snake -im sure its alot chepaer than stem cell therapy - and that hasnt had any positive results? Essentially i am taking the attitude that if it cant harm me, i.e risk factor then why not give it ago - any alternative would love to read about and make an informed decision myself - perhaps my bones may rattle a little more as i progress with this disease lololol but i wont go down NOT trying anything -i so wish i was able to read what the very first post was going to point out -sad to see pple are banned for offerring alternative therapies. Are their sponsors for this forum?
 

Wings

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pearshoot -nicely put and agree - love to read more about what ppl are doing to slow progression ... i have started Feldenkrais classes -its perfect for me as you do what you can and it about mind body movement - etc etc so much more ... i just had my first class today and went really well :) read up about it its easy ti find on the net. Any way too tired now to type much more :) - I fell asleep and logged back in when i woke up NZ time its the eraly hours of the morning lol
 

pearshoot

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even joal suggested with proper diet, proper mental attitude, not being depressed you have a greater opportunity of living longer than those that are unable to overcome their depression. why is it so hard to admit their are things you can do to slow progression? making your body as healthy as possible is the MOST important tool we got
 

vzandt

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I'm not putting him back on his cholesterol meds:)
 
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