Started Lunasin Study

[Nuts]

Hubby started the Lunasin study at Duke this week. So far he's had two bouts of queasy stomach. Hopefully that will pass. We're excited to give it a try and will let you all know if we get any good results.

Becky

 

[affected]

Oh do please keep us updated as you can, this is great that Matt is helping work towards a hopeful cure xx

 

[konagirl]

Thanks for posting, I look forward to your future posts on this. Traveling to Duke is not an option for us, but as soon as we are done with the trial we are currently in (3months) I am going to buy the Lunasin on our own to follow the regimen with.

 

[Duker52]

Looking forward to hear how this is progressing. Not on the Duke ALS Clinic schedule until October, but hope to get into the Lunasin trial then.

 

[Nuts]

We're a week in and the only side effect so far is an upset stomach a couple of nights. We're adjusting when he drinks his PM shake and it seems to be helping.

We're mixing the powders with Crystal Light, but it's leaving quite a chalking film so I'm sure hubby will be trying other mixes in the future. He wants it mixed thin so it's a lot to consume at once.

Becky

 

[chally]

Hey Becky, we're coming down the 13 th to start lunasin, will see you guys that night if that's ok still. Love ya & good luck matt

 

[KimT]

We're a week in and the only side effect so far is an upset stomach a couple of nights. We're adjusting when he drinks his PM shake and it seems to be helping.

We're mixing the powders with Crystal Light, but it's leaving quite a chalking film so I'm sure hubby will be trying other mixes in the future. He wants it mixed thin so it's a lot to consume at once.

Becky

Becky, Can you use something without aspartame and artificial ingredients? The Crystal Light might be the problem. Best wishes on the study!

 

[Nuts]

Kim, we've moved on to chocolate almond milk, which works much better.

Chally, were so sorry to miss you on this trip. Mumps has screwed up a visit from friends from Portugal tomorrow and Beth and Chally Monday night. I love my grandchildren, but I suspect they were the carriers!

Becky

 

[LeprechaunSean]

Just settle in for the long haul, and remember... It's a process, not an event. If it even just slows the disease down its worth it. I won't make any wild claims, but I know it's helping me. Just wish the stuff was cheaper...

 

[maryhahnward]

T will be part of the study as well. He starts the end of July. We are cautiously optimistic.

 

[Nuts]

Mary, let me know when you will be at Duke. By then Matt should be over the mumps

Sean, I like the process analogy.

Here's to whatever good we can garner!

 

[chally]

Hey Mary glad tom 's in too. Him,Matt,& me can compare notes. Lol chally

 

[Nuts]

We've decided to start videoing on Friday mornings. We were both surprised to see movement in one of his feet (very slight, but it was movement) when we thought he's lost all ability in that foot. I'm hesitant to get excited, so we'll document those tootsies.

 

[affected]

I think that documenting everything you can during a study is so important.
Video is truly the best way as you can actually compare, not just rely on memory of how much movement was there after x weeks and how much at x months.

Good on you, I hope you get something to really report.

 

[maryhahnward]

Chilly, Matt & Tom - the three amigos! Will do Becky! I'll PM the date. Great idea on videoing weekly....maybe pass that on to Bedlack's research coordinator.