need information amino acids

[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]

To rilutek or not to.

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]

Re: How to get someone to change their eating habit(s)...

[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