Father Newly Diagnosed

[Englishman]

Thanks Nikki.

I don't think he suffers from twitches but he does have fascilations.

My concerns are:

1) if he waits until after Xmas then what if the symptoms progress when potentially the Riluzole could of slowed it down.
2) if he does have it now, he is currently able to walk but has to think when doing so. He currently has to get up and down the stairs and is already tired. If the Riluzole makes him more tired then in worried he may fall down them.
3) he is currently having antidepressants then it will be Riluzole and he is also suffering with stiffness in the night he will also be having Balcofen. So this will mean we won't be able measure what drug is doing what so I said have the antidepressent and the Riluzole now and use Coconut Oil instead of the Balcofen for now. Do you agree?

He is going to go to Birmingham (uk) to see the professor there to get a 2nd opinion after Xmas. We are not expecting a miracle but my father had a EMG 6 weeks ago and nothing showed up but the other EMG did when he was diagnosed 2 weeks ago so I am dubious.

Thanks again for your advice and support.

 

[Englishman]

Hi Ken

Thanks for you support.

I have briefly looked at the Dianne Protocol and looks positive. What does this involve and has anyone on here tried it?

Thanks.

 

[KenG]

I haven't looked into it too much; but I have tried to get my father involved with it. I know that it is rather involved and takes some effort to follow. From the top of my head I know it involves taking several antioxidant supplements as well as massaging/consuming Virgin Coconut oil.

Ken

 

[kenschatz]

I have used the Deanna Protocol for about 60 days - and I am a fan of it. I use an abundance of other Amino Acids and Vitamins. I do not use Riluzole, tried it and it made me feel "weird" and tired. I also use L Serene - 28 grams a day - I mix it in water 4 times a day. As you can see in my profile I was diagnosed officially in July/2014. I use an APO on my left foot, speech is slurred, and have lost dexterity in my left hand. It's basically all on my left side. I think I have a slow moving ALS - don't have much to measure by, but at this point consider myself pretty lucky. I feel like all the stuff I take has helped, but there is no way for me to be sure. I "feel" like it has been slowed, stabilized, but obviously no way to measure the true numbers. I will continue to take the Protocol and keep adding ingredients.
I'm 66 years old, also let an active lifestyle. I also stay positive - think that helps me and my family.

 

[skipper66]

My dad tried Riluzole and he tolerated it pretty well but got off of it because he didn't feel it was doing any good. I'm not saying not to try it. But, from what I hear from others it's not too promising. You might try something else along with it. I only know of one guy who is doing well with really any treatment and he had stem cells. But, others had it done as well with not as good of results. The guy who is doing well is Ted Harada who used to be on the forum but hasn't been on for a long time. He is on facebook. I think it was Emory where he had his done at. Others may know more about it then me.

 

[MaxEidswick]

>He is due to start on Riluzole next Thursday but I was hoping you kind people could advise me on your experiences with taking any other of the below and if it has helped you in any way:

fwiw on Riluzole, why not? Take 1-2 hours before or after eating. if side effects, try 1/2 for a while.

wrt Deanna see untangled

I take:

Low Dose Aspirin 81mg TAB 1 per day by mouth
Allopurinol 75mg TAB 1 per day by mouth
Riluzole 50mg TAB 1 tablet by mouth every 12 hours
Baclofen 20mg TAB 1 tablet by mouth twice daily
Glycopyrrolate 1mg TAB 2 tablets by mouth every 6 hours as needed
Centrum Silver Men 50+ TAB 1 per day by mouth
Vitamin C 1000mg CAP 2 x per day
Vitamin E 1000 IU CAP 2 x per day
Vitamin D3 2000 IU CAP 1 x per day
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day
Dexilant 60 mg CAP 1 per day by mouth
Mucinex 1200 mg TAB 2 x per day
Clonazepam 0.5mg TAB 1 capsule twice a day as needed
Zolipidem Tartrate 10 mg TAB 1 tablet by mouth at bedtime as needed
L-Serine 500 mg Tab 1 tablet every 12 hours
Fingolimod, 1/day



Max - Tuesday, December 30, 2014 12:54:26 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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