New member

[Marcel the mechanic]

Hi everyone!I have so many questions where to start.I have bulbar als ,been diagnosed since march 09 and it's been always 2 months between any doctor visit,and when I get to see them I'm overloaded with information I can never get my questions in or feel to stupid to ask them.Maybe you guys can answer them for me. 1.I bought a book called Eric winning and his thoughts and diet seem to be interesting to follow,has anyone tried it.2.I'm in the process of removing/replacing all my amalgams,I have 10 of them,is this a good move.3.Has anyone had luck in slowing down als without the drugs.that's all I'm going to ask for now so let me know your take on this hope to get response.https://www.alsforums.com/forum/images/smilies/confused.gif

 

[joelc]

Welcome to the forum! I think you should read this thread and then ask more questions.

https://www.alsforums.com/forum/people-als-pals/920-eric-edney-even-better-now-dont-fooled-scam.html

 

[Zaphoon]

Marcel,

Welcome to the forum! Sorry you have this disease.

Regarding the amalgam removal, it might have some slight benefit psychologically but once you have ALS, removing amalgam hasn't been proven to stop, slow down or reverse anything. I guess if you can afford to have it done, go for it.

There is reason to believe Eric may not be "winning" any longer. It's been reported he has reverted to stem cell therapy in Germany. Many of us on this forum have very mixed opinions on what he has done and continues to do with his marketing.

Zaphoon

 

[BethU]

Marcel ... I believe the only other proven way to slow down progression ... aside from Rilutek ... is by maintaining your weight. My neuro says it slows progression even more than Rilutek, so most of us work pretty hard to keep from losing weight.

Starting the BiPap early also seems to be a good idea and avoiding stress helps a lot.

I'm sorry for your diagnosed, but glad you found us. Welcome to the forum, and good luck!

 

[wacked]

Seems to me that your energy might be best utilized by living rather than trying not to die. Do what makes you happy. Update, when it makes you happy.

 

[GlenBrittle]

Hey Marcel,

Yes , we all went through the OMG , what can I do phase when diagnosed. You will learn very early that if you have to pay for the "cure" its generally a waste of money.

The book you bought and was bought for me is basically a book of common sense that you already had. I too had all of the amalgams replaced because insurance paid the shot. It has not been proven to help , other than a piece of mind for you. There are many drug trials going on , but nothing has been proven to help .

The best things to do are: have a positive attitude , keep your energy levels up , keep your weight on , be proactive on getting the things that will help you maintain yourself - example PEG for eating , BiPAP for breathing , and even a Vent once Bipap become in-effective, mobility devices - scooters , PWC .

The rest is a crap shoot.

Hope this helps.

Glen

 

[DgtofTNfan]

Hi Marcel,
Welcome to the forum but I am sorry you were diagnosed. You have found a great place for information with very supportive people here. When I first joined I searched the forum threads and found helpful information from questions that were already asked and answered and then you can build from there.
Again welcome.
Dana

 

[icecreamlady]

Marcel,

Sorry about your DX.. I believe that anything you need to pay for , fly to far away counties, or involves use of a credit card is sometimes full of false hope. I have a cousin that has MS. She has fund raisers to raise money to fly over seas to get cured. I pray this will work. I just want to enjoy my life....

ALS is like a bull ride in it's self...I just want to hang on and ride the ride. Try to stay a head of the disease, and be ready...

Lora

No Fear -Just faith...