Started Lunasin Study

[COSister]

Here is Kay in the pool today. We wish we had a before video. She has much more core strength, requires less supervision now in the pool after one week. Before we had to stay very close as she would lose balance, legs float up, go face first in the water. We called it "a drill" when it happened. Pretty much every time.

Here is a video she made for her friends on the forum:

https://www.youtube.com/watch?v=LvE7Go3N4eM


Marcia - Kay's sister

 

[soonerwife]

That is so awesome!

 

[Nuts]

Kay, that's fabulous!!

Goddess, we also use frozen fruit now in the Lunasin shakes, and hubby eats fruit all day (and drinks lots of liquids)

Being over full is harder. We try to time the shakes between meals so they don't interfere with his food intake.

Good luck!

We had a day last Friday when Mattj's stomach was so upset that he couldn't drink the Lunasin at all. Sunday and Monday his arms were noticeably weaker. I'm watching to see if that arm strength improves in the hopes that it was just the one day off. He's also eating fewer white carbs in order to get his diabetes under some sort of control, show who knows which? Wouldn't it be ironic if he needs the carbs that ar poisoning him?

Becky

 

[chally]

Been on lunasin 6 wks now.
Not noticing any slow down or reversal in fact I have been going down in my breathing and need trilogy more and more but hey I am *****ing just reporting.
I eat my breakfast first wait a bit then 6 caps& shake,cold w/ lots of hearsay chocolate .
Then @ evening meal eat first again ,wait then 6 caps& shake.
Good luck to everyone!

 

[azgirl]

I wake up, have coffee and half a bagel.
Wait a hour, Lunasin shake with yogurt, fruit, oj, very filling.

Go to pool, shower.
Eat real food for lunch!

Rest in bed for 2 hours.
Wake up and drink Lunasin with only orange juice and ice. We find I feel less full and bloated, and then after another hour or so I can eat some real food again.

Back in bed by 8.

This schedule has made my stomach feel better. Another change yesterday, I did not have to ask anyone to lift my hand onto the joystick even one time. It is really strange to have some positive changes after two years of nothing but decline. It's weird, and impossible to know if it will continue, but it sure feels good now.

 

[Nuts]

Hey Chally, I don't know why, but they recommend opening the capsules and dumping the contents into the shake. It sounds like you are swallowing them separately. I can't imagine why it makes a difference, but you might try it.

You also might be extra special and need an extra special answer

Love the rafting pictures. Live it, buddy!!!

Love
Becky

 

[azgirl]

Chally, I am positive that I could not drink that shake after other food. I also open the capsules into the shake. Also I don't know if it's related but I'm using the cough assist more regularly and that helps to

 

[KimT]

I've read this whole thread and am considering it. I bought Tudca but just haven't decided which to try first. Going on a two-week trip and coming back 9-1 so will probably hold off and start then.

 

[azgirl]

Kim, it is a really hard decision to decide what to try. I know many people who think tudca is the way to go. I only chose Lunasin since I respect dr bedlack and was able to purchase the products used in the trial. Wish I could have tried it earlier and my progression, but the $500 per month may have become prohibitive. I was also encouraged by the positive results that Matt, Becky's husband was seeing.

I continue to see small progress in function. Yesterday in the pool I moved around without the noodle, and was able to float on my back comfortably with small movements of my arms and legs. Also I'm able to run the joystick on my will chair much more easily, and was even able to push the buttons to adjust it which I have not been able to do for over a month. Who knows if any of this will stick, but it's encouraging. Did you see the video at the pool that my sister posted above in this thread.

 

[KimT]

Kay, I saw the wonderful video. I'm so glad you have a pool! My generous neighbor lets me use his pool. It isn't heated but it'll be warm enough for me through September, maybe into October. My cramps get much worse if I'm in anything below low 80s water. I thought with all the weight gain that I'd not be so cold all the time LOL

Tudca would be a lot easier and I have some specific questions on lunasin after reading their web site.

One of the claims of their product was that it lowered cholesterol and uric acid. Aren't we supposed to keep uric acid high or did I misread something. Pretty much same with cholesterol. Then there is the weight loss issue. Their product claimed weight loss and we don't want that......although I seriously question Mayo's advice to go from 120 to 140 as quickly as possible.

Anyway, I'm so delighted about Matt's results and very, very encouraged about yours!!!!!! Please keep posting.

 

[Nikki J]

A higher uric acid correlated with a slower progression. That is the rationale behind the inosine trial. My neuro suggested a goal of 7 for uric acid.

High Cholesterol was also thought to correlate with slower progression but I think further analysis showed it was not an independent variable.

So hard to know what to do!

 

[KimT]

Yes, that was my hesitation to choose lunasin over tudca and also why I choke sardines down daily (I used to like them but I've had to find creative ways to enjoy them....like melting cheese and covering them with sauce. Another interesting way was to cover them with mustard which, I thought, might kill two birds with one stone.

It is so hard to know what to do and I hate the amount of time I spend researching what to do and what not do do.

 

[vltsra]

I agree, Kim, it is hard to know what to do. My PALS has a slow progression and I am trying to do all we can to keep it that way. He has been researching diets; it's frustrating because I have found six different diets that recommend six different opposing things - eat fats and meat, don't eat red meat, eat raw vegan, don't eat gluten, eat coconut oil, don't eat fats. He is also pre-diabetic and has high triglycerides, but perhaps I should not worry about the cholesterol. We were thinking of trying lunasin as well.

V

 

[azgirl]

It will be interesting to see my next round of blood work after taking Lunasin. Before ALS I took Lipitor for cholesterol, but quit the day of diagnosis. As far as diet goes, I read everything and then settled on a healthy diet of good fats and lots of fruits and vegetables and lean meats. Wish there was a good answer.

I think I gained 15 pounds Or A bit more since diagnosis. This feels horrible after a lifetime of being an athlete, but I suppose it is protective.

 

[vltsra]

Thanks Kay, I'll be interested to see what they say about your blood work, keep us posted. My husband has gained a little weight and is concerned about it; I told him not to worry but then there is the pre-diabetes too. Your results have been really encouraging so I hope things continue to improve for you.

V