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What I meant was I'd trade PMA for ALS. I have ALS and would rather have one of the other MND's. Reading that again, what I said was not very clear. Sorry.
AL.
 
Whoa!

HI FOLKS!...Unless there is another Manfred ou there with almost the same number of posts ....someone is scamming! I have Eric Edney's book and I have heard of his situation...and as I have stated here as elsewhere ,he has survived with his a.l.s. doing what works for him..noone has yet disputed his affliction nor his success with whatever he claims to have done(no one has as yet disproved the claims of several other A.L.S. "survivors")It happens to be a fact that stephen Hawkings not only has survived A.L.S. for 40yrs,but has married and had children..he was recently in the news as having experienced "Zero Gravity" on an aeroplane trip designed to give people this experience..he is also a well known scientist (black hole theory etc...) but his crowning achievement has to be ,not only his brilliance but the fact that he has "contolled" his affliction and may yet live to see or be instrumental in finding a "cure"(He has recently inaugurated the opening of an A.L.S.RESEARCH CLINIC in Israel!)I was refered to Eric Edney's book by someone from a neurological research institute (he has a P.H.D.) with the connotation that although the story of Eric is winning has no scientific support for ti's contention it is interesting reading...I have the book....yes!,but I have not gotten beyond scanning through it as some of the indications do seem outrageous!Give the cost of maintainance of this affliction ,especially for some in the more advanced stages I couldn't really fault him for making money on his book.....I also would not call him a fake or a charletan...obviously what he says he's doing works for him...the post previous to this one was NOT MADE BY ME!There are no acquaintances or "relatives recentlydiagnosed" in my milieu...the person involved is my Daughter and she was missdiagnosed,and subsequently diagnosed with p.m.a. an oddessy of three major cities and three reputable neurological institutes. Of all the long term survivors I have researched ,Eric,even though he is "winning" seems to be all over the place with his theories...that doesn't mean that all of his conceptions are wrong.is not telling any one to do anything but research and make up their own minds...the individual is after all is said and done responsible for his or her own conclusions and actions!As I have stated before ,my daughter has embarked on a regimen of rilutek and V-E ...prescribed by her neuro..as well as a combination of Anti-oxidants and light exercises...pilates...as well she has always eaten healthy food products even before this diagnosis.If you do the research youl'll find that there is a common denominator in both disease and treatment,however what triggers this phenomenon is still being researched(over 100yrs now),so in the meantime if someone finds something that works for them,and they share that info...use it or don't... but if it works ? ther is no cure yetso as far as I can see ,slowing and /or halting progression for however long one can do it increases one's chance to be around when a cure is finally discovered !Furthermore my daughter has had tis condition for 5yrs not 7!So whoever is using my name to post sarcasm I don't find it amusing! Manfred
 
peeved

Hi again,I'm really peeved so this is just post script...it would appear that any one can type in a name and post whatever they feel like ...other als/mnd site require a code to enter a post ..might not be a bad idea,,...heck I don't even "talk" like that!Manfred
 
P.p.s.

Can you tell that that post is bothering me? On 05-18-2007 at 02:47 A.M. I was fast asleep and pretty far from my computer..like toronto...ontario!Manfred.
 
peeved

Hi again,only this time I sort of have to appollogise for "over reacting"...I found the culprit who was using my computer while I was in Toronto.It seems my younger son (who is very concerned over his sisters predicament) actually was reading Eric's bookand was totally confused on how to take his concepts and was sincerely trying to get feed back on whether or not what eric was saying really worked and whether or not someone in the forum was following eric's agenda(right now his sister is not!)and whether or not someone had positive results with eric's regimen.Had I realised his concern ,I could have answered some of his queries.I quess ,even though I try too be positive and keep my familly up to date on what I learn in the process of "surfing "the web ,we all as individuals are having a difficult time grasping an issue that we can neither affect nor control.I quess my kids have more concerns than I had realised.I know he spends a lot of time on the web trying to find "something "that will help his sister...I'm no longer "peeved"..just embarassed that I didn't recognise right away that my son does "talk like that"Hope we didn't cause any anxieties over Eric's Book,but I still believe that if something works for someone..even if it won't work for others..they should stick with what works for as long as it does work.Sorry about this , Manfred..
 
OK by me

Hi Manfred,

I thought all your postings were very interesting and fun. I did pause with the idea of needing a code to post here. We do. Like me you probably have your computer "fixed" to recognize your code automatically so if anyone clicks on my "favorites" and the forum, my code is automatically entered and "I" am in no matter who is typing. You had to enter your code too but probably awhile back. I think your apology was gracious and fun as we all have moments with our kids, no matter how old they/we are. Take Care, Peg
 
Actually I wasn't so much concerned about Eric because most everyone knows my views on that but the idea that someone could use your name was disturbing. Your computer has an IP address and your name you register under show up on the server. That's how they catch crooks and pedophiles. There are ways around that but I was amazed someone would go to that trouble here. No harm done.
AL.
 
Hi Manfred -

I call these "proud parenting moments". Like the time one of my kids called 911 to see what would happen, etc. :oops: This is a perfect example of how savvy and resourceful kids are with navigating the net.

Liz
 
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