Status
Not open for further replies.
I don't take rilutek...

I take ester-c though in powder form.

I get muscle milk [liquid form] at costco or sam's club it's a lot cheaper.
 
Adam

Your note is great. So kind of you to share your experience. I will start drinking the muscle milk again. I haven't had it for awhile. However...

We get "Muscle Milk" (MM) on line. The largest container is $36.00 with $6.00 for shipping. My husband orders 2 containers at a time so that the shipping is split to $3.00 each. He used to drink it with just water. But now we add about 1/2 cup of plain yogurt, 8oz of skim milk, and a banana. We put it in the blender with 4 or 5 ice cubes and two scoops of the MM mix. It makes two large drinks and tastes great, like a malt. You can order different flavors but we like the chocolate MM. You can also add other fruit like berries. The yogurt gives it more protein. The ice give it malt consistency, if you want that.

Here is the site he orders it from. It is much more expensive in the stores like $30.00 for 1/2 the size. If we drink it everyday each container lasts us at least a month.

http://www.allstarhealth.com/f/cytosport-muscle_milk_light.htm#productlist

Hope this helps. Best Wishes, Peg
 
Hi Adam and James,

You are both so inspirational. Attitude is everything, isn't it. We just have to be positive and try to focus on what is good and be hopeful because this disease is so overwhelming.

Thank you.

Connie
 
My husband, Gordie, is taking Rilutek and hopes it helps. He hasn't had any side effects or problems.
 
My husband was diagnosed when our twins were 4 months old; that was 3 months ago. I am amazed by his positive attitude! We also believe that there will be a cure soon; he wants to stick around to see them grow up!
 
1Adam12, thank you for your informative posting. My 18 year old son was just DX with ALS. He's currently on a daily dose of 200mg Rilutek, 1000mg Amoxicillin, plus the supplements Vit E and CoQ10. Agreed the supplements may not be slowing the progression but it won't hurt and should help his general health, althought it does add two more daily pills, which he's unhappy about. He's eligible to participate in a trial on Talampanel at Forbes Norris, although we haven't decided yet.

I love your attitude and your down to earth, practical tips. Thank you for sharing. Here's to a slow progression.....

Valya
 
1Adam12, thank you !i feel much better now !

to 1Adam12,
i like to thank you for the tips you share here.
you help me a lot!
i just heard that my mother has PBP today , just after i became a mother at age of 43.
i was so frustrated that i could not sleep the other two days.

but after yr post, i feel confident now.
i will tell my mother to stay on a good attitude, just go travel ,just hv fun.
just hv good sleep....

and i will tell my mother to eat good, keep a good weight.

at moment, i my mother is eating baby food, and baby milk , which is my idea.
my mother is living in china, there is no muscle-milk , but we will find sth substantive.

i am in Holland , i hv just send 2package of Rilutek to her, hope that will help.

keep in tought everybody!

Let fight together ! we will win !


linda :lol:
 
Thanks Adam and the rest of you for all of the helpful advice. I can't tell you how much it means to me to listen to such hopeful stories.

I was recently diagnosed with Als and am awaiting my second diagnosed from an ALS specialist in Portland, Oregon--Dr. Kim Goslin.

My first sign of weakness came last spring from a partial left foot drop, which is has gradually progressed to more difficulty walking on that leg. However, I have UMN symptoms going back at least a couple of years. I also have a lot of muscle twitching.

I too believe that some very good therapies will arrive in the near future in the form of stem cells developed by Neuralstem, Inc., as well as viral gene therapies that are being co-developed in a partnership between ALS TDI and the bio-pharamceutical company, Askeliopos, which was announced recently. I'm sure other therapies are also being developed at this time as well.
 
Rilutec

I have been taking it for three months now and think my progress has levelled out a bit and no side effects as yet
 
Hi Adam, my brother in law was diagnoised 2/09 and is having a hard time with this. My question to you is i saw you drink wine daily? My brother in law is a die hard beer drinker, never eats just drinks. How can his brain send any messages to his body if he drinks like this and how long can he last? Iam not asking you as a dr. but do you drink alot each day ? I need to help him and my sister because its too overwhelming for them thank you sharileeus . brother in law 2009
 
Hi sharileeus. Sorry to hear about your brother in law. Drinking all day and not eating might be his way of self-medicating his sorrows. Certainly can't blame him for feeling down right now.

If this is new behavior, let's hope it changes when he adjusts to the news. If not, you might want to contact your local Al-Anon organization. They will have a wealth of information about how to help your sister and her family. Good luck and keep in touch. It will be interesting to see how this works out. Cindy
 
Thanks Cindy, I believe that if he would lighten up on the beer he would be able to eat better and maybe exercise alittle more. I know how he feels but he has been drinking for the past 16 years like this. I know its hard but two rehabs latter iam sober since1998. I also was in hospital last feb. 2008 and told i would not see another month and here i am gardening all summer, moving rock and doing alot. I know als is bad but does lifestyle changes make a difference at all? Some of his weakness could come from alcohol maybe because i remember how i felt when i drank. I not saying he should stop all together but does anyone feel he should give it a chance after the shock wears off. Or does the drinking really not do anything? thanks again iam just grasping at anything i can to help them and i feel so helpless that i wish i could give her some kind of answers because thats what big sisters do. Sorry for the rambling sharileeus
 
Sharilee, first congratulations on 10 years sober. That is a great achievement.

I have never heard of any discussions about excess alcohol consumption affecting ALS one way or another. One of the most important things he needs to do is keep his weight up. If the beer interferes with his eating, as you say it does, or if he's losing weight, you need to try to figure out how to get better nutrition into him.

Also, his drinking is going to affect his quality of life and health as ALS progresses. If he loses weight, strength and muscle, he will have balance problems, and a load of beer in his belly is not going to help. I'm sure it will make caregiving much more difficult.

But if he's been drinking like this for 16 years, you and I both know he's probably not going to stop when he's hit with a whammy like ALS. (My sobriety date is 1979) Unless he has a transforming experience. Do you think he is capable of cutting back? If so, I'd say DEFINITELY it would help him to get good nutrition and protein into his system. As ALS progresses, he will have less and less control over his intake ... and he may require a feeding tube, which would allow your sil to get some good nutrients in him, too.

If there's any way you could convince him to cut back and replace at least some of the beer calories with more healthful stuff, that will help his overall health and give him a better fighting chance with ALS. And the sooner he cuts back, the better. But, if the beer helps him cope right now, I'd say, just try to get him to taper off so he can take in more healthful foods. Don't take away his crutch completely.

IMO, going cold turkey on booze would be the wrong battle for him to be fighting right now. He's got enough on his plate with ALS. This will be a difficult task for you, but I do suggest trying to help him cut back.

Cindy's advice is excellent ... Alanon would be of enormous help to you and your sil, but frankly I think ALS trumps everything right now. It's up to him if he is willing to fight ALS.
 
thank you Bethu, it was hard but......... Anyway thats good advice. I agree, he cannot go cold turkey because the withdraws might kill him. I am going to use myself as a example when we have a family meeting. He saw the doctor the day after superbowl and i do not know how much they tell her but it seems to me he might of faired better in the strength test if he wasn't hung over. I know how he feels about the news because i was diagnoised with ph in 2008. The outlook for that is also bad but, after losing 60lbs of waterweight on lasix and doing exactly what my doctors says iam doing really well and no ph meds at this time. I know als is different but i feel if i can do what they tell me i might be around longer than they think. The doctors in Feb. 2008 I would not last a month. Well......... maybe if he can get better nutrition in him and exercise after the shock wears off he can live like some on this board. Again thanks sharilee p. s. I will take it slow with him and give him the respect he deserves
 
Status
Not open for further replies.
Back
Top