The Medicatio and Vitamins Begin Today Please Advise

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Hi Jen:

Creatine is a natural substance that your body produces. The supplement has been used by body builders to increase muscle mass. There was a real push for it as a treatment for ALS in 2000. My wife was on it. Late in the year or early in 2001 there was a double blind experiment conducted to determine effectiveness and it was inconclusive. There are a lot of PALS who are using it. I think Al does.
As for getting stronger for your Dad... you'll have to give yourself some time... he was only diagnosed last week and everybody has to get used to this... on the other hand maybe you could try the creatine. It will make you strong... but I'm not sure you'll like the look!
Cheers... and find a sense of humour!

T.
 
Question:
How many people here read Blaylock's book, "Excitotoxins: The Taste That Kills"?
This is a must-read book for everyone with ALS.

I don't understand the resistance against knowledge about ALS from people with ALS.

The ALS binder-book mentions the glutamate theory in passing as if to dismiss it. It contains no detailed information. Not even references. This is shockingly serious omission in the book.

Why the resistance to knowledge that would help?

I thought we are here to beat ALS. Perhaps not. Maybe I'm in a wrong discussion group.
 
Jerry,
I think people ARE here to gain knowledge about ALS from people who have ALS. Why do you think Jen posted what she did? She was trying to gain knowledge about this disease that her father has. Giving her suggestions is exactly what she is looking for. (at least that is what I got out of her post)

Jen,
I totally understand how you are feeling about your dad. I know when my dad was diagnosed I felt like my world had been flipped upside down. Every time I talked to him, I would get off the phone and cry. It was hard for him to talk to us kids about it because he would get emotional too. As wierd as it sounds, it does get better. You start to focus on the things that are going good, and when a set back occurs, you somehow find strength to get through it. All you can do is be a supportive daughter. Try to treat him like you did before you found out about this. He is still the same person he was last week, but now he has a name for the illness he has. I try to make my dad laugh, and encourage him to do the things he likes. (he enjoys golfing, horse races, playing with his grandkids) He golfs a couple of times a week, he's going to a race track at the end of this month, and he sees his grandkids a few times a week too. I talk to him about things that are going on in my life, just like I have always done. I encourage my parents to do things together while they still can. I visit my parents all the time. These are some of the things that I do to help me cope. I think that it helps my dad cope too. Just hang in there and give this some time as TBear said. I know that this is hard to accept. Hang in there.
Dana
 
Hi Jen. TBear is right I do use Creatine Monohydrate. I take one with no artificial flavours or colouring. No preservatives. No corn, wheat or soy. No dairy and yeast free. I take 5g or a heaping teaspoon full every day mixed in juice. It looks and tastes like Cuba beach sand but it isn't too bad. Don't know if it helps or not but so far it hasn't killed me. Another guy in our support group has been taking it but he uses the flavoured kind and takes it with water. He hasn't complained of any ill effects either. I buy it at GNC a health food store here in Ont.

And no Jerry I haven't personally read Blaylock's book or the other one touted as a be all cure all here.

Two reasons: First it is hard to turn the pages and my hands cramp up when I try to hold a book.

Second: I'm too busy enjoying life to spend hours reading unproven theories and what not by someone who wrote a book to make fast cash.
 
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Hi Jen,
I take Creatine, the same kind as Al in the same amount. I take it mixed with yogart. I have no way of knowing if it is helping or not, but my doc agreed that it would be a good thing to try. Jen, hang in there, things will get a little easier. It takes time to absorb the reality of this disease, but it does get easier as time goes by. You learn to do what you can and to live one day at a time, and, for me, to have faith in God.

Al, thank you for your posts. You are able to say in a few words exactly the right things! You, Carol and a few others keep this forum going and I appreciate that!
 
Jerry - I wouldn't say people don't want to be educated here. Some of those writing here have been on this road awhile either as a PAL or CAL and have "been there, done that". There is a lot of wisdom here and many are trying to help the "newbies" not have to reinvent the wheel!
 
Thank you all so much for your feed back.... Dad's doctor is on vacation and I don't want him to start something before running it by him.... I am however going to talk to him about it upon his return.

I do believe that things will get better it is just the not knowing that hurts. Dad is very good most of the time and then he gets into a funk cause someone will ask him what is wrong or what happenend and when he says ALS they about faint.... They bascially don't know what to say and really without realizing it thik of him gone.... This is not fair he could live for many years people have been known to live for 20 years with this. It could be even years before it begins to affect anything else.... I mean is he or we as a family wrong for believing this. I have faith and believe that it is important to pray GOD for a cure for all of you, to pray that some how this whole disease will stop in my dad and all of you.... You know my mom actually told me a year ago when dad was not doing well and having falls that I should not necessarly pray that it is MS or PLS cause a bad case of PLS or MS can hurt him more or faster then a mild case of ALS... I never forget that.... I thank GOD for the good days and pray that there are many years of them.I also want to thank everyone that has responded to those that bascially dismiss my questions and actually insult me... I have learned that this world is full of all types of people and everyone is intitled to there opinion, I just wish that everyone else would learn to adapt to that theory :roll: You know my fiancee told me last night that these boards are great but to remember that there are prob. alot more people out there that have this ALS and are living long and doing well the reason we don't know about them is because they chose not to write cause they are doing well. I never thought of it this way but to be honest it gave me even more hope that there really is different versions of this disease. :wink:
 
Hi Jen,

First on Creatine, I was advised by my neuro to take it as Al laid out. Where people (bodybuilders etc) run into trouble is they double, triple or even quadruple the recommended intake!
It is in no way, wrong to think that your dad will survive this longer than 10, 20 or 30 years! Stephen Hawking has had it for over 35 years! Why so long? I’m convinced that it is because he put the disease on the back burner and brought his life to the front. His science, lecturing, wife and children are his focus, not some…life obstacle! I’m a great believer in the mind-body connection. But that’s another thread…

Jerry…oh Jerry…
You’ve given your information and we thank you! Now could you stop with the paranoid, obsessive drivel?

He shoots…
Maybe I'm in a wrong discussion group.
He scoooorrrres! :D
 
Thanks Mike...... As you can tell I have days when I am glued to this board for support cause I can't beilve this is happening.... other days I am doing well and able to get work done and do my day to day stuff... Dad well he is just not even thinking about it so he says but then when someone says something boy does he hit hard on the depression....

Mike forgive me if you told me this before I actually started a book so I remember all of this and don't have to ask again and again...

What is your life with ALS been like? When were you dig. how do you feel? What medication?

Jen
 
Re Mike's post:
Well said,
And hopefully, it was the last game of the season.....

Jen,
I think the attitude you have about your father's ALS is wonderful. We do not know the outcome for any of us. I have learned to live one day at a time, give lots of hugs, see and do what I can while I still can. There is nothing wrong with hope, it keeps us going, and who knows when a cure or help is just around the corner. Our faith will make us strong, keep praying for us!

Leah
 
Jen

I'll post that info on the "who we are" thread.
See ya there!

Cheers
 
Hey Mike I like your new Avatar. Is that Moses or you ?
 
Thanks!
I got it from a Viking site, It's Odin, the chief of the Gods.
I thought it looked pretty good, either watching the sun set on a day well spent or watching the sun rise on new opportunity!

Or, just a guy standing there with a fishing rod...

Cheers Al!
 
I have had ALS since 1991 and do not take any drugs of any kind other than quinine sulphate for leg, foot and hand cramps. These cramps usually result from cold weather or too much typing on the computer and it is nearly impossible to avoid both of these! Some people swear by Rilutek, on the other hand never being on it I kind of shy away from it. I am always afraid that something "out of the ordinary" for me might just trigger the disease. I eat only things from the grocery store as I have all my life, I get my annual flu shot and try to avoid colds. This seems to work well for me, I agree with Al even if we do have ALS we cannot or will not live in a bubble.

Geo.
 
Hi Geo,
Whatever you're doing it seems to be working well!
I know what you mean about the cold, I always cramp up in the cold! Up to my jaw, that's fun!

I take the flu vaccine as well, I also take the pneumonia vaccine. It's good for 5 years (I believe) but I think it's important.

I was offered Rilutek, but like you, I don't want to mess up whatever I'm doing.

Cheers!
 
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