My Dad met Eric Edney's cousin at his barber!

[trfogey]

"Also, I don't think people being sarcastic have actually educated themselves on what Eric Edney actually does."

Some of them have. And others have sought further information from Eric and have been rebuffed. And still others of us know people who don't participate here that fit those prior two categories. And despite what you seem to want to believe about us, there are a good many of us PALS who are just as capable, if not more capable of reading and comprehending scientific papers than you are.

You are a newcomer to the ALS game, Andy. The most notable trait among newcomers is denial, most specifically that there really aren't any therapies that do much to slow down or to stop this monster. And there are always vultures like Eric who are willing to cater their snake oil to you while you are in denial.

 

[Blubear]

You know, I have to step in here. trfogey...Andy is just trying to share his opinion. His dad has received good results with Eric's regimen and so has my dad. Now again, we all know everyone reacts differently to different methods with this disease. But if someone has good results with something I cannot imagine not wanting to tell people about it. Andy has never said that he believes that he is more capable of reading and comprehending scientific papers than other people here. We KNOW our parents will get worse, but for now if this is working for our PALS it is all good....right!
Oh yes and one more thing, please dont get snippy with me too, bashing people doesnt do anyone any good it only hurts people and who needs to have all that negative stuff floating around anyway?!

 

[thelma313]

Let's try not to be so blunt and jaded with newcomers. My dad tried Eric Edney's plan and he did feel better for a while. I am so grateful for that time now. I look back on the 18 months since my dad's diagnosis and I know that Eric Edney's book gave us the hope we needed in the beginning to get us through each day.

Andy, Kari, I so know what you are going through... only as fellow children of dads with ALS can know. You tell your dads how proud of them you are for doing whatever it takes and leaving no stone unturned. If they are not hurting financially because of Eric Edney's plan, then more power to them. You are both in my thoughts and if you ever need to bend anyone's ear I am here!

Just take this one day at a time....
Rosella

 

[Blubear]

I luv ya CURLS! Thank you for your response!
Hugs, Kari

 

[thelma313]

Hey it's all about the curls, Curly.
Big hugs to you... xoxo

 

[trfogey]

Blubear,

Feel free to jump in. Unlike some folks around here, my feelings aren't so delicate that I can't stand open criticism of what I say or a spirited debate about my opinions.

I quoted and responded to one remark that Andy made in his last post in this thread, but there was another snide comment that he made that was worthy of some special attention as well. Let me dig it up.

"I don't think people try the supplements or organic diet, because they get overwhelmed and it's easier for them not to think about it."

Well, now-- wasn't that a nice thing to say about all the PALS here that are not taking all the supplements that Andy thinks we should be taking? Or those of us who are not eating the proper diet of organically grown foods prepared in the proper way to preserve the optimal levels of natural nutrients available in the foods.

So what do we have here? First, anybody who makes a sarcastic remark about St. Eric of Edney is either unable to (or is lacking the correct motivation or attitude to) properly evaluate the medical efficacy of the regimen marketed by said saint-- even though the sacred book has been available for evaluation and study by the finest medical minds (not to mention the ones who would simply like to have something other than prayers, lawyers, and love to offer their patients) for literally years, without endorsement by anyone of any renown in the ALS/MND community. I wonder why that is. I know -- the doctors are all too stupid, incompetent, undermotivated, or lazy to do the evaluation, see the light, and get with the program, right?

Second, when it comes to complicated things like understanding about nutritional supplements and the impact on food nutritional values imparted by standard farming methods versus organic methods, our poor little old pea brains just overload and shut down. And it's too uncomfortable for us to stretch our minds around new concepts, so we don't even try.

Gee whiz, why would anybody get upset at being characterized like that?

I'm not jaded with newcomers, Rosella -- and thanks ever so much for that characterization, by the way -- but I am a little jaded with the whole "neuros don't know anything" routine so many newbies show up with these days. This attitude, IMO, is fed mostly by the fly-by-night "alternative therapy consultants" who won't do the scientific work to back up their claims while they hide behind lenient regulation of nutritional supplements so they don't get sued into a well-deserved bankruptcy for failing to deliver the therapeutic benefits that they "all but" promise to desperate people who are trying to find a way out. Maybe you don't see anything wrong with profiteering on other people's pain -- I do. And I will continue to be blunt and outspoken against the practitioners of that particular scurillious art form as long as I am able to send bits across a network.

Enough said from my side -- feel free to flame away. I wear only the finest grade asbestos underwear when I sit down at my computer.

 

[thelma313]

Allen I did not characterize you as jaded -- I think you are brilliant and I totally look up to you. I learn something from every one of your posts. I was just saying that I was grateful for the time during which my family and I believed that my dad was doing something to slow down the progression because at that time we were hopeful just like Kari and Andy. That is the only point I was trying to make. Maybe the organic diet and supplements act as a placebo but I swear my dad felt better.... at first. Of course he came to realize and so did we that he was progressing along and eventually opted not to force 20 "natural" pills down his throat every day.

I am a sensitive person that's all and while I love how blunt you are with the people that come on here obsessed with the ludicrous idea that they have ALS based on symptoms that have nothing to do with ALS, I just wished in this particular case, you would have softened your delivery a little bit with the newcomers who are living through that devastating phase right after the diagnosis when emotions are raw and hope is so essential.... but honestly you are probably right. Who am I to impose my opinion on your way of communicating? I agree 1000% that profiteering on other people's pain is a deplorable way to earn a living. Luckily the only money we ever gave Eric Edney was the $15 for his book. The rest of the money my parents spent on the organic approach went to health food stores and a homeopath.

How's that for flaming away? Seriously I think you are awesome and I hope there are no hard feelings.

 

[brooksea]

Can you gain weight with Eric's regimen? That is the question you really need to ask. If not, go for the fried food and dairy. OK - organic fried food and dairy!

Educate yourselves on the benefits of gaining weight with ALS and the survival rate. I don't have the links - Google it!

I would also suggest you make sure any supplements you take are not detrimental to a pALS condition or symptoms.

ALSTDI had a forum member that devised a diet for his wife, I believe he was a doc. It was similar to the Atkins diet. There are studies that show high fat helps with survival. Maybe some with more brains than I have tonight can chime in.

Sorry, I'm not an Eric fan. I wish my husband had thought of writing a book about how to survive with ALS. Believe me, he would not have made it into an enterprise to sell anything and he is a born salesman. He would have done anything in the world to help others at no charge!

Not bashing anyone. Just telling you what I know and have experienced since my husband was diagnosed.

 

[Blubear]

Okay okay...I think we have to remember that when people are typing things out that sometimes it comes across the wrong way. I think we talked about this on another thread too. I have to admit, well sorry Andy, but I am a junk food junkie. My parents hate that! I love Stouffers and pretty much live on processed foods because I have pain issues that dont allow me to stand for a long period of time. Even if I didn't have the pain, I wouldn't have the money to do the whole organic thing. It's not hard at all to buy organic, it's either organic or it's not. Cant to "all natural"...(um yea so is cocaine) so you do have to watch some things. When my dad was first diagnosed and I didn't even know what ALS was, (shame on me) we all did what I "think" everyone probably does and start looking for that "miracle cure"...and what causes this beast? Well, we know there is no cure. What causes it? Well, we know about the glutamate build up in the brain that kills the motor neurons. We learned that it is thought that the glutamate that you eat does not cross the blood brain barrier, but nobody is 100% sure about that so, we as a family all got a list of exactly what MSG and natural glutamate is. That list is longgggggggggggg. I can remember going to the grocery store with my paper and pencil to try and find things without any form of glutamate. Oh boy, that was a nightmare. I did get overwhelmed and I think I found probably 10 things in the entire store that didnt have some form of toxin or glutamate in it. Yep, I was "overwhelmed." Of course I shop at Walmart, but my parents go to the natural health food stores and Trader Joes so it is a bit easier to find the things that are good for you there. Now I cant speak for Andy, but when you are first diagnosed, EVERYTHING is overwhelming. It does not matter what your IQ is. And, like I have said before who knows how my dad would be doing if he didn't do Eric's regimen, because there is absolutely no way to be sure. I do know for sure that his detoxing does make him not slur. That cannot be a placebo effect. I can tell you that my mom complains because she has now put on a bunch of weight from doing Eric's diet. That woman works out like a teenager at the age of 67! It's really weird seeing her kinda pudgy. (ohhh hope she doesnt see this haha) My dad has put on about 10lbs since being on the Eric thing, and prior to that he was consistently losing weight. So, that is all good. My dad does not buy any of Eric's particular products that I know of, but has taken the advice on what supplements to buy etc... I myself with my disease issues take vitamins, (well lord knows I dont get much from my diet haha) and am currently trying magnesium spray for pain issues. Hey if it helps, I am a happy girl!
Hugs, Kari

 

[trfogey]

t-313,

Thanks for the kind words. Of course there aren't any hard feelings from my side of things.

If I'm blunt these days, it's because I have to type with my feet and it's very tiring to construct pages of flowery doubletalk to avoid getting into somebody's space. Say it plain and say it once -- that's my new motto.

 

[thelma313]

Well it's a good motto, tr, and like I said before I learn something new from you every time you post. If we were all the same what a boring world this would be. Kudos for learning to type with your feet! Wow.

 

[sadiemae]

My son is 17 and does weightlifting at school. He is #2 in the school with the weight/ratio. He hit a brick wall and wanted protein drinks. I found a product at wal mart for 13 dollars for a 30 day supply. It is Body Fortress brand Creatine powder. Tastes like fruit punch kool aid. I had a nutritionist from the VA out for a home visit, and she approved it for my husband. It also has glutartate in it, which I researched, and it is a liver detoxifier. She said the ingredients wouldnt hurt him, and his diet is low in protien so go for it. We have doctors that believe weight is the #1 thing PALS can do. Les is 5ft 9in, and weighs 200 lbs. This is SO FINE with them, and his target weight to maintain is 200 lbs. We have a PEG, but hardly use it other than to flush, and her advise was to eat what you enjoy, and use the PEG for nutrients you are missing in your favorite foods. Her mother in law died of ALS, at age 88. My husband is bulbar onset, so we know his days of eating by mouth are probably coming to an end in the near future, so we eat for pleasure now. Only problem, I have gained 15 pounds since his DX. HUGS Lori