9 Month Lunasin Update

[LeprechaunSean]

Just a quick update this time. My weight is still completely stable, I don't even really think about it anymore. My legs have definitely gotten weaker over the past few months and I was feeling a little discouraged about that when I went in for my three month FVC test, when low and behold I came in at 60%.... Which now adds up to a total of a 14% increase since I began Lunasin nine months ago. So main points on this update are weight good, legs weaker, diaphragm better. Take it as you will. Will have my one year update in August. On a side note, one of the hardest things about taking Lunasin for me is the monotony of two shakes everyday. I think a PEG would actually be a blessing that way. I'm now 5.5 years surgery free…

 

[scaredwifetx]

so happy that your FVC is up and you haven't lost weight.

 

[Lixen]

14% increase in FVC in 9 months & stable weight, I say a huge congrats is in order! Do you have any plans to get a PEG? All things considered, I'd trade weaker legs for a stronger diaphragm & stable weight any day of the week (though not minimizing weakness.) VERY happy for you.

 

[Nuts]

Congratulations, Sean! Those two shakes a day are a bit of a challenge for my hubby. We really have to stick to a tight schedule to get everything in and done in a day!

What do you mix with yours? The best we've found so far is chocolate almond milk.

Becky

 

[LeprechaunSean]

14% increase in FVC in 9 months & stable weight, I say a huge congrats is in order! Do you have any plans to get a PEG? All things considered, I'd trade weaker legs for a stronger diaphragm & stable weight any day of the week (though not minimizing weakness.) VERY happy for you.

I was actually scheduled for a PEG last August, cancelled it, rescheduled it for November, cancelled it again and never rescheduled. I absolutely will get one if my weight and FVC start going down again. So far I have just found it not necessary yet. I have also already made plans for a trache/vent if it becomes necessary.

 

[LeprechaunSean]

After alot of experimentation I have settled on very simple shakes. I do skim milk with provantage in the morning and various juices with the NOW in the evening. If it gets too thick I have a hard time getting it up the straw.

 

[maryhahnward]

Such a great update! Thank you for sharing with us. I love that your FVC has increased - that's monumental with ALS.

 

[4tloml]

Great to see those results, Sean! Thank you for sharing them.

 

[KimT]

That's great news, Sean! Keep slugging those shakes down.

 

[Duker52]

Congratulations! I tried to get included in the study, but the 50 participants had already been reached. Does anyone take Lunasin on their own, outside of the study?

 

[lgelb]

Several people do, including Sean.

 

[GregK]

Does anyone take Lunasin on their own, outside of the study?

Use the Search function. There are many threads that mention Lunasin.

 

[LeprechaunSean]

Yep what IgelB said. You can find the dosing regimen in the ALS Untangled article on Lunasin.

 

[konagirl]

This is great news Sean! I have been following your Lunasin posts since you began, thank you for continuing to post your updates.

 

[soonerwife]

Can anyone tell me who you can get Lunasin outside of the trial?