Started Lunasin Study

[Nuts]

I think being too full is a problem for many PALS taking the Lunasin. I keep trying to make the shakes smaller, but it's very hard to do that. The ice is an important ingredient here, also. If it's not cold, I get asked why!

We've switched from the chocolate almond milk to regular unsweetened almond milk with frozen fruit. I'd like to sneak some yogurt in, but that might get me into trouble . I try to time the shakes between meals, but it's tough.

Blue train, I'm so lazy that I wish my guy would drink it mixed with warm water!!

Wine...absolutely afterwards to wash it all down, or before hand to get your courage up! Actually, I taste every shake I make for my guy and some of them are tasty. One trick is blending the cr@$ out of it to get the grit down.

Becky

 

[codyclan]

Can you use Lunasin through the PEG? My PALS doesn't take much by mouth anymore, a few sips of tea or soda, but would not be able to drink a 'shake'.

 

[Nuts]

I have not entered the peg zone, but I don't know why not. It is gritty--anyone want to chime in on whether it would clog? It's thick, so you'd still have to blend it, and it's filling, so would it be too much?

Anyone out there using it through a tube?

 

[maryhahnward]

Tom starts on Sunday. His FVC has improved from January - likely from using the Astral at night is what we are thinking - nothing to do with the study since he hasn't started it.

 

[Nuts]

Good news, Mary--on both counts!!
Becky

 

[azgirl]

I am on day six of the Lunasin protocol and am up to the full dosage. Thought you all would be interested in the changes I've noticed, full disclosure, I am a good candidate for placebo effect.

The last two nights my fasciculations in shoulders upper arms back and butt are back and intense. It's really weird to feel them again. I like to imagine the motor neurons healing, but who knows

. The biggest change has been at the pool. For the past month I have been unable to control my legs and they float up and result in me being face down in the water even though I have a noodle tucked snuggly under my armpits, fortunately my caregiver stays close and puts me up again. But today, I was able to move around in the pool, even in the deeper water with no floatation device, with no tipping over. It felt like I had the core strength to keep my feet down and balanced. This also felt weird and kind of exciting.

The only negative side effect I'm having is a real bloated feeling after drinking the shakes, kind of like you just ate a huge Thanksgiving dinner!

Will keep you all updated, and I am interested in hearing from anyone else taking the Lunasin.

 

[scaredwifetx]

That's great news azgirl.

 

[affected]

Kay that is so exciting!!!!

 

[Ells]

Wow, that is fantastic - long may it continue

 

[tarheels65]

How is he doing? I started the study a little over a month ago. Prayers

 

[tarheels65]

Been on the study for over a month now and feeling some of the same effects. Prayers to you.

 

[Nuts]

Kay and Tarheels, great news!

I don't know if you can add your info to the Duke section, but you may be able to report your progress on Patients Like Me. That's where Duke is collecting information from PALS in the study. I'm sure that any extra information would be of interest.

When I pull Matt's legs up (bent at the knee) in bed he can now push them back down. In fact, he kind of kicked me in fun He was totally unable to move those legs before. He still can't pull them up, but it's a start. I've also noticed that he can once again flip his own pillow when it gets hot. YEAH!! Oh, and he's not struggle as much with the urinal at night

Becky

 

[azgirl]

I am using patients like me to report.
I am cautiously optimistic about the changes I'm noticing. It is strange to feel these little differences, certainly this is the first time in over two years that I have seen anything positive. I think it must be real, because it would be very difficult to fake any change in function. So great to hear others reporting similar news.

For the last two days I haven't had to ask anyone to lift my hand onto the joystick. This is a small change, but it is noticeable.

Let's all just hope it is real, and it continues.
-Kay

 

[Goddess]

My husband Mike has been on the Duke Lunsain trial for a little more than one month. He thinks he's feeling stronger and able to walk a little farther. Major problem is feeling too full to eat his meals and lots of trouble with constipation. Any suggestions?

 

[azgirl]

I'm actually feeling less constipated. They mix the shake with yogurt and lots of fruit. I also eat prunes and try to drink lots of water. I also take Align, A pro biotic. I can eat very little after the shake, but try to eat real food for lunch.