need information amino acids

[Elaine]

Hi everyone,
I was wondering if any of you are taking amino acids, if so do they help?
What about CO Q10?
A friend of mine said I should take these , they are suppose to put oxygen in the cells
I would appreciate all of your knowledge on this matter.
Thanks , and all of you keep well. Elaine

[PALS Mike]

Coenzyme Q10 is used by cells to produce energy needed for cell growth and maintenance. It is also used by the body as an antioxidant. An antioxidant is a substance that protects cells from chemicals called free radicals. Free radicals are highly reactive chemicals that can damage important parts of cells, including deoxyribonucleic acid (DNA).

I was supplimenting my diet with Coenzyme Q10 (and bunch of other vitamins too numerous to mention). I DO believe it helped. Unfortunately pills are hard for me to swallow now and I had to find a liquid multi-vitamin source.

My main focus is to look at my diet as a "whole"...
I try to keep a BALANCED approach making sure I have 6-8 glasses of water per day, suppliment my diet with good NATURAL multi-vitamin and BM's daily.
The only reason I mention BM's is....(not trying to be gross)
You should ask yourself these very simple questions...
1. How many meals a day do you have?
2. How many BM's do have daily?
(If you eat 3 meals...you should have 3 BM's....right)

If you aren't going to the washroom at least ONCE daily...Ask yourself this:
How long would I leave meat on my kitchen counter before it would go bad?
Then ask yourself (assuming the avg person takes 8 hours to properly digest their food):
How long should meat/food remain in my Gastro-Intestinal Tract (at a considerably warmer temp than room temperature)?

Which brings me to my point...
Supplimenting your diet (with CoQ10, Creatine, Vitamin E, etc.) is a good thing.
Just make sure to be balanced in your approach and not be focused one suppliment vs another.
And...
If your Gastro-Intestinal Tract / Digestive System isn't working as it should...Then your body isn't getting the nutrients it needs and you might be wasting money on suppliments your body won't receive. (It's kind of like changing the oil in your car but not the oil filter...sure, you've given the engine what it needs to operate properly, but because the filter is dirty...the engine never gets the proper(clean) oil to run properly. The engine will run, but for how long without causing problems)
A VERY simplistic view/approach/explanation I know...But does it make sense???

I'm not a doctor...I've done alot research on diet and chronic illness and this seems to work for me, as I (for the most part) feel great after 2+ years.


Hope it helps... :shock:

[me]

That's a great way to look at it. Now, the question is how to get someone who generally has a terrible diet, to eat better. If he'd just rather grin and bear it (the symptoms) rather than try to do things that might help??????

[PALS Mike]

Simple enough...

I WAS an "Eat fast food 5 times a week" type of guy for years (before my diagnosis).
Poor diet isn't just a case of "it'll make you fat" or "cause a heart attack" anymore.
Have him rent/watch the movie Super Size Me
http://www.supersizeme.com/home.aspx?page=aboutmovie
It should give you a whole new attitude towards FASTFOOD and poor diets in general.

About the movie...
Why are Americans so fat? Find out in Super Size Me, a tongue in-cheek - and burger in hand -- look at the legal, financial and physical costs of America's hunger for fast food.
Ominously, 37% of American children and adolescents are carrying too much fat and 2 out of every three adults are overweight or obese. Is it our fault for lacking self-control, or are the fast-food corporations to blame?
Filmmaker Morgan Spurlock hit the road and interviewed experts in 20 U.S. cities, including Houston, the "Fattest City" in America. From Surgeon Generals to gym teachers, cooks to kids, lawmakers to legislators, these authorities shared their research, opinions and "gut feelings" on our ever-expanding girth.
During the journey, Spurlock also put his own body on the line, living on nothing but McDonald's for an entire month with three simple rules:
1) No options: he could only eat what was available over the counter (water included!)
2) No supersizing unless offered
3) No excuses: he had to eat every item on the menu at least once
It all adds up to a fat food bill, harrowing visits to the doctor, and compelling viewing for anyone who's ever wondered if man could live on fast food alone.
The film explores the horror of school lunch programs, declining health and physical education classes, food addictions and the extreme measures people take to lose weight and regain their health.
Super Size Me is a satirical jab in the stomach, overstuffed with fat and facts about the billion-dollar industry besieged by doctors, lawyers and nutritionists alike. "Would you like fries with that?" will never sound the same!

[Elaine]

Thanks for all the information. Are you also taking riluzole?
I've been reading the posts and some say it makes no difference and yet some say it does. I'm not on it yet and I was wondering if it's a good idea . I'm going to the clinic next month and would like to prepare myself with some information from you and the rest of the crew that have been posting on this board.
Keep well, Elaine

[me]

:shock: I saw "Supersize Me" It was fantastic.....well, fantastically scarey! The fact that he had almost pickled his liver before the month was up and the doctor was advising him to quit really made an impact. I've been trying to eat healthier (specifically, less fast food) since seeing that.
-me-

[PALS Mike]

I was offered the Riluzole test program (twice).
The first time...
Was my 1st visit to the clinic. Got all the info (possible benefits, possible side effects, etc.). Asked my family what they thought I should do.
I thought and thought about it...For me, the answer was No...
I don't believe the possible side effects were worth POSSIBLY extending my life by (an avg of) 3 months. Why would I want to hurt one part of my body to help another?
The 2nd time...
The Neurologist gave me the whole song and dance..."If you were my family member, I'd really recommend you take Riluzole...blah, blah, blah".
Problem was...he NEVER looked me in the eyes/face while telling me about Riluzole. My thought was, "If you want me to be your Guinea Pig...talk to me, not the wall behind me." Who's concience would it benefit...His (because he has nothing else to offer) or mine?

I found out (recently, from one internet source) that Riluzole was originally developed to combat/prevent DWARFISM! (still trying to confirm this fact/myth)(I'm 6'3"...dwarfism is not an issue :D )

Bottomline...
Go with your Gut feeling...
Ask yourself these questions:
1. Do the benefits out weigh the risks/side effects?
2. Will the Riluzole(or any pharmeceutical) help YOU...or help your doctor sleep at night?

Since my diagnosis (July 02), I have taken NO medication(s) what so ever.
I just get my annual Flu shot. :shock:

[Al]

More wisdom?? from Al. To Melissa: I find that if someone prepares my meals (Lee) I eat better. She tries to follow weight watchers and the food guide. We both like all veggies raw and uncooked so maybe that makes it easier for her. Being of Irish descent I do like my meat and potatoes and my red wine. Red wine is healthy right? Lee is the pasta eater so I guess we could stop at Carol's. Lee eats the pasta and I drink the wine. To Elaine: I take Riluzole mostly because the Neurologist suggested it and so far it hasn't hurt me as far as I know. Get my blood tested regularly. Not sure if it is helping though either. The dwarfism thing sounds like something out of Urban Legends. I started taking Creatin this week and was already taking CoQ10, Vitamin C and Vitamin E. Just found mixed tocopherol Vit E last week so started to take it rather than the regular Natural Source. I got the flu and pneumonia shot this year. Hope this gives you food for thought as they say. Oh and as an afterthought I'm a pretty regular kind of guy as Mike would put it.

[Elaine]

The bottom line is: no one really knows if it works.I'm going to try the Cretine and CoQ10 already taking vitamin E and a multi vitamin have to wait and see if I'm going to take Riluzole.I really don't think I will , time will tell...
Mike where did you get the three months more life expectancy from?
Really , if that's all you get why bother taking it.
Healthy food is good.,,,, but there's going to come a time when we won't be able to eat what we want to . I say savor everthing now and enjoy what you like to eat and drink{ of course in moderations}
That's what life is all about Good Friends ,Good food, Good drink,
a Good loving family and for sure a really Good forum like this one.
Thanks for your input Al and Mike.
Keep well, Elaine

[me]

Al - that's for the wisdom....I think you're right about that one. Usually if I do prepare a meal he'll eat it. We have just been so busy. But, I am trying to find different ways around that (like cooking ahead on the weekend, crock pot, etc). Maybe we need Lee in this group! How does she do it? :) Sometimes I wonder if I'm strong enough to keep up with this stuff.

Anyway, I am also trying to buy different health foods (such as flax seed, etc) that I can sneak into the food I cook also. I found that vitamin E and B12 come in liquid form. I was wondering if that can be added to cooked food or will that reduce the effectiveness. Hmmmm, I'm going to do some research but if anyone has any ideas, let me know.

I'm also trying to dress up the healthy foods by making things like baked apples, apple crisp, and pumpkin pie. At least the vitamins are there!

Elaine - you're right about enjoying the foods now. That's kind of his philosphy. One of those people that figures we're all going to die some day so you might as well enjoy it. I don't want to go to the opposite end of the spectrum, but.....I guess I like to be in control and changing your diet is one way to at least feel in control.

[me]

Al - my posting above is supposed to start with "thanks for the wisdom"! -me-

[Al]

Actually I was joking about the wisdom. The 3 months comes from different sources. I have read at least 6 different studies? about how long Riluzole is supposed to stave off being put on a vent or the other alternative. It has been from 3 months to 18 months. I take it so I'm hoping for the 18 month study to be right. So who do you believe? I don't know. Read as much as you can so at least you can make an informed rather than an emotional decision. There are many emotions involved with this thing but with knowledge comes strength.

[PALS Mike]

A True Story

Jerry was the kind of guy you love to hate. He was Always in a good mood and always had something positive to say. When someone would ask him how he was doing, he would reply, "if I were any better I would be twins!" He was a unique manager because he had several waiters who had followed him around from restaurant to restaurant. The reason the waiters followed Jerry was because of his attitude. He was a natural motivator. If an employee was having a bad day, Jerry was there telling the employee how to look on the positive side of the situation. Seeing this style really made me curious, so one day I went up to Jerry and asked him, "I don't get it! You can't be a positive person all the time. How do you do it?" Jerry replied, "Each morning I wake up and say to myself, Jerry, you have two choices today.You can choose to be in a good mood or you can choose to be in a bad mood. I choose to be in a good mood. Each time something bad happens, I can choose to b a victim or I can choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining or I can point out the positive side of life. I choose the positive side of life." "Yeah, right, it's not that easy," I protested. "Yes, it is,"Jerry said. "Life is all about choices. when you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people will affect your mood. You choose to be in a good mood or a bad mood. The bottom line: it's your choice how you live life." I reflected on what Jerry said.
Soon thereafter, I left the restaurant industry to start my own business. We lost touch, but I thought about him when I made a choice about life instead of reacting to it.

Several years later, I heard that Jerry did something you are never supposed to do in a restaurant business: he left the back door open one morning and was held up by three armed robbers. While trying to open the safe, his hand, shaking from nervousness, slipped off the combination. The robbers panicked and shot him. Luckily, Jerry was found relatively quickly and rushed to the local trauma center. After 18 hours of surgery and weeks of intensive care Jerry was released from hospital with fragments of the bullet still in his body. I saw Jerry about six months after the incident. When I asked him how he was, he replied, "If I were any better I would be twins. Wanna see my scars?" I declined to see his wounds, but did ask him what had gone through his mind as the robbery took place. "The first thing that went through my mind was that I should have locked the door,"
Jerry replied. "Then, as I lay on the floor, I remembered that I had two choices: I could choose to live, or I could choose to die. I chose to live."
"Weren't you scared? Did you lose consciousness?" I asked. Jerry continued, "The paramedics were great. They kept telling me I was going to be fine. Butwhen they wheeled me into the emergency room and I saw the expressions on the faces of the doctors and nurses, I really got scared. In their eyes, I read, "He's a dead man." I knew I needed to take action. "What did you do?" I asked. "Well, there was a big, burly nurse shouting questions at me," said Jerry. "She asked me if I was allergic to anything. "Yes," I replied. The doctors and nurses stopped working as they waited for me to reply. I took a deep breath and yelled, "bullets!" Over their laughter I told them, "I am choosing to live. Operate on me as if I'm alive, not dead."
Jerry lived, thanks to the skill of the doctors and nurses, but also because
of his amazing attitude. I learned from him that very day we have two
choices to live fully.

Attitude, after all, is everything.

[TBear]

... on the other hand, I know someone who has been on Riluzol for over 12 years with no complications. He has slowed down somewhat in the past couple of years. His symptoms have progressed and he is a bit slouched over too (possibly that incipient dwarfism kicking in).

The point is that, descriptive statistics can be believed... but don't forget that for every person on the short side of the median that there is someone on the long side... maybe you!

T.

[Elaine]

Thanks for all the sound advice........, Mike with attitude, Al with strength, TBear with hope......Life is so precious , we really don't realize it until we are confronted with a situation we have no control over.
One day at a time is my favorite saying and I also like the song.
I have been energized with your words of wisdom,so much so, that I went Christmas shopping this morning. Maurice, my husband was shocked !!! he said " you must really feel good today ". I told him "actually I do".
Keep it up guys, we all need a pep talk once in a while.
Thanks again from the bottom of my heart.
Keep well, Elaine

[Carol Deboer]

Hi Guys,

Glad to hear that you had a good day Elaine!!! Yes, it is getting to be that time of year again. I love the season and everything that comes along with it. This will be a special Christmas for us. I hope it will be one that will be etched in our hearts forever. We are a very tight knit family with a lot of friends, and we share the holidays with everyone. Some of our friends are alone, and our hearts and homes are open to them too. This time of year is a time to share, rejoice, and to reflect. It has been a difficult year for us, but, I think we still have a lot to be thankful for, and we also hope that the future will bring us peace . I just hope that I can get one full nights sleep!! Elaine, I hope that you will do what is best for you. Remember, that there will be alot of people that will tell you to try this and that, and that is okay, however, not all things will give you remedy or make you feel better. Some things will give you short term effects, and that is okay too, we have to find the "thing" that will work for you. Riluzol was not an option for Henry. The doc tried to persuade him to try, but, Henry was really too far gone into the als zone, and Dr, Strong said the same thing to us, it could give you approx. 3 more months in the long run. Some of the side effects were not in our liking, soooo, we said no thanks. I think if you feel that it is an option for you, go for it. I do not care to go into long drawn out medical terms, or clinical descriptions, because you will find all of this out on your own, and some of our posters will fill you in. I guess I find all of that marble garble boring!!! I try to educate myself and others with the personal side of als. The human side of things. My medicine and treatment are a very simple prescription, laugh often, live well, love much. I know that with some of the alternative treatments that we have done for Henry have kept him with us for a lot longer than maybe he would have been, and that I am so grateful for, but what it all boils down to is ...Love. A person that knows how much he or she is loved does much better in a critical situation. I hope that you have a great support system, and I wish only the best for you and your family.

And in my famous words.... STAY STRONG.. God Bless


My computer is still down, I am using Henrys, so hope to talk to all soon via my own pc.

Kim, I miss you so much, I hope that all is well with you. How is Tim? Say hi to him for me. Will talk to you soon. love and hugs...xoxox

Carol D.

[Timshelper]

Dear Carol,
I miss you too my dear lady on th rilutek issue I was quite surprised by the info on dwarfism. Tim has taken rilutek since diagnosed and he is such a little man in stature I would hate it if that was on of the side effects. I do agree if you are too far into ALS there is no need for rilutek, after all it is still an experimental drug. At least here thats what they tell you I know Tim had to sign some kind of waiver just in case something else happened to him from the drug. I can't see that it has improved anything for him as his disease is progressing quite quickly. I think he takes it at as one of those last hopes that something just might help or even work. Its hard to swallow this one because Tim is already on palliative care. I wonder what he would feel like without the drug and just exactly what is it destroying? I definitly will say Hi to you for him as I mention you all the time when we talk. He does take Q10 and vitamin e and other supplements and is juicing 3 times a day. Carol I cant beleive hes actually doing that. Now there is some controversy over taking too much vitamin e what will they think of next.? I ope you have a wonderful Xmas and Iwish I could spend it with you. the froum is definitly keeping on top off things and taht is great to see. I guess we finallly have a very good group who know how to communicate and aren't afraid to ask questions. there never are any stupid questions just really dumb answers or no answers at all. I don't understand one thing though about the forum why are there not more research studies shown or Drs speaking up. You look at thatt topic and there are no views to look at or anything you can reply too. Sometimes I reallly wonder about our Medical community no matter where we live. It sounds like most of you have very good relationships with your Dr unfortunately Tim does not even have that support. Anyway everybody enjoy your weekend and Carol maybe its time for a phone call.
Talk to you soon
Kim
Tim's helper
ALS about loving someone
PS Carol or Giselle I guess I should say I ppicked up a copy of your magazine and you look stunning. Just marvelous darling. :lol:

[TBear]

Hi Carol...

Hope you've found some relief for Henry's GI system. I sent an email but I see that your computer is not on line... that's okay. Didn't know that you were a pasta chef... and Johnny and I, the resident Italians didn't suspect a thing! He's probably laughing now!

... on the other hand, the last little dutch girl who did pasta for me dumped a can of tuna fish in the sauce and almost made me gag!

The whole philosophy of "well I can sleep later" doesn't work. I know it's a challenge right now, but find time to grab as many power naps as you can. It will serve you well.

Good luck!

Cheers
T.

[Elaine]

I must say Carol you have a way with words. I've read all the posts you have summited and you are a great inspiration to us all.
You've travelled the roads before all of us have. We kind of draw from you all of your experiences in this journey we have yet to travel.
I hope and pray that we all have the strength to face the unknown.
Our journey is a hard one ,no one wants their family to suffer and most of all we do not want to be a burden on them.Hard for me I was always the strong force in ours.Will my husband be able to care for me? I really don't know.We have a lot of support from friends and of course our children.
Time will tell.

May God be with you and keep you strong and try to get some sleep.

Thanks for being there, Elaine

[Carol Deboer]

Hi Kim, Hi Ted, Good Morning !!!!

FYI FYI FYI I laid down after supper last night at about 8 pm. and, and get this, get this, I woke up this morning at 10 am. WOW!!!!!!!!!!! Can you believe that? I can't. They let me sleep, my wonderful family. How nice is that. However, my sides hurt and my back hurts, my neck hurts, I hate to complain but I think I was in bed for too long. I have the weekend off, so I am going to the movies with my 7 year old nephew, we have a date to see The Polar Express. I think we will both enjoy it. I have not been on a date for some time !!! cannot wait. Ted, I will personally give you permission to spank me if you ever, ever saw me doing some stupid thing like putting tuna into pasta. ugh....What I made last night for supper was cappeli di angeli tossed in garlic and light olive oil, sauteed clams in a wonderful rosa sauce. Pass? can I move on to the next level? Not bad for the dutch girl eh? I used to laugh when all the Italians used to come in to our resturant, and say did Maria, make the pasta? Did Franca make the pasta? And I would just stick my blond head out of the kitchen and yell, no, the dutch girl make the pasta, and then we would pick them up off the floor, and laugh like hell!! I still have an annual feast, in which at least 20 or so of our friends come over and I just stuff pasta and related goodies down their throats for 3 or 4 hours. Good times. I give them a wine list, and they bring bottles upon bottles of good wine, and usually there is nothing left at the end of the night. Henry always makes me hide a bottle for him for later!! ha.... One day, my dear friends here... we too will have that feast. Only Ted is gonna cook it !! ha ha Henry is prgressing by the day. It is very scary. He is sleeping more during the day now, which he never did before, and he is just so weak. He cannot hold his head up now even with the neck brace it is difficult. I dread the thoughts of him not being able to speack anymore. He is barely audible at times. It is so scary. The doc said to just keep him comfortable now, and he will be starting on morphine soon. Hope that will help with his pain. It is almost unbearable at times for him. So, we just go day to day. He is sleeeping now, right beside me, he looks so peaceful and content. He likes me right beside him all the time. Anyway, I must go get ready for my 'date". Will let you know how the movie was. Kim, yes, it is time to talk voice to voice. If I find time Sunday night, maybe, you will hear from me. miss ya.

Have a great day all!!!! Hi to Al and Lee, Bear2, Melissa xoxo, Jane, Fisher, are you still on your honeymoon? What gives, get out of bed and say hi to us all. Congrats on the nups.

Love, Carol D.

[Carol Deboer]

Hi Ted,

Just wanted to let you know that Gas-X, in the super strength pills have really worked for Henry. He still takes the maxarane, but this in combination has kept the tube from getting blown up in his upper track. He still has some pressure some days, but not like it was before. It was unbearable. Just wanted to let you know, that we seem to have found releif for now. Take care.

Love, Carol

[TBear]

Hi Carol:

Glad that you've found something that works. It's really hit and miss management issues at this point isn't it.
I'm doing lunch for a friend who is bringing over a Kuwaiti exchange student. So I guess hot dogs are out of the question as is anything with pork. I'm doing pasta y fagioli... a peasant delight with a bit of sun dried tomato pesto to liven it up (the wine will be for me!). As for dinner for 20 or 30... no problem. I can fly in but the cost in wine might be prohibitive! (got three bottles of Amarone on sale at the LCBO... didn't know they did that!)
Have fun on your date... take care and don't forget to get regular rest!

Cheers

T.

[bear2]

Hi all,

Hope everyone is having a good weekend. My folks made it down south okay. They said they had to turn the air conditioner on when they hit the Carolinas. That was the same morning I had to scrape the frost off the windows here to get to work. I hope the warm weather and seeing old friends again will give my Dad a lift. His spirits were down leaving here - he keeps seeing everything he does as maybe the last time he will be able to do it. I fear the change I will see in him when they return home -it's hard to think of what can happen in 6 months after all that has changed in the last 4.
Elaine- glad you felt well enough to head out for a bit of shopping. That's usually a good boost. You say that you were always the strong one in the family. The others never had to be - I bet that you will be surprised at how they step up to the plate. I have found out in the last few months how valuable family is and how they rally around when the need arises. I'm sure you will find out how valuable you are to all of your family and friends as well.

Hope you have/had a great date Carol. Glad that you were able to catch up on a few winks too!

I must be going now, all this talk about pasta this and pasta that has made me hungry,

Take care, Thinking of you all,
bear2

[Carol Deboer]

Hey Bear2,

Sorry, so sorry.... I will not allow any of us to talk about food again !!! ha We will just talk about wine ha. ha. Not a bad idea actually ??** mmmm
The movie was grrrrrreeeeaaaat, a must see for the family. We had a wonderful afternoon, I needed to get out and relax a little, after the movie I took my nephew to see Santa at the mall, man I miss those days when your kids are babies and the wonder of everything is just amazing. i got lots of hugs and kisses, and we had ice cream, a cheeseburger, popcorn, berry candies, jujubes, and then Auntie (me) had to have a big ole sit down. Oh well, I only do that about once every 2 or 3 years. I did extra time on the treadmill later !! Cheers....

Carol

[Jerry Story]

[quote:9311c2c7a4="PALS Mike"]Simple enough...
I WAS an "Eat fast food 5 times a week" type of guy for years (before my diagnosis).
[/quote:9311c2c7a4]

Eating fast food 5 times a week will contribute to causing ALS.

Everyone with ALS must avoid all restaurant foods. To avoid MSG you must avoid dozens of ingredients that contain or may contain MSG. Unbound glutamate produces a spike that people with ALS don't handle well. This spike is what kills motor neurons. Stay off all restaurant foods, no exception, no compromise, ever. Unless you want to kill motor neurons.

[Jerry Story]

[quote:7029696b01="Elaine"]Hi everyone,
I was wondering if any of you are taking amino acids, if so do they help?
[/quote:7029696b01]

If you take amino acids, strictly avoid glutamic acid! Do not touch glutamic acid with a ten foot pole!

[christinapace]

Wow, Mike what a great PMA. I am definitely going to send that letter around, you just made my week.

I will be looking into Riluzole a little closer as well.

Mike, did you ever get the Lyme Disease tests done?

Christina