Recent content by LeprechaunSean

  1. LeprechaunSean

    PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

    years since I checked into this post. Still here people. :)
  2. LeprechaunSean

    9 Month Lunasin Update

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

    Started Lunasin Study

    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...
  4. LeprechaunSean

    9 Month Lunasin Update

    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.
  5. LeprechaunSean

    9 Month Lunasin Update

    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...
  6. LeprechaunSean

    9 Month Lunasin Update

    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...
  7. LeprechaunSean

    Six Month Lunasin Report

    Thanks guys, I will definitely update every so often. I consider myself an optimistic realist and while I would love to get better I would gladly settle for not getting worse. It would be great if we could all just will ourselves better but I don't think willpower will grow motor neurons...
  8. LeprechaunSean

    Six Month Lunasin Report

    Six Month Lunasin Report Started on the Duke University\McDuff regimen on Aug 15\2015. Weight: 181 lbs FVC: 46% ALS FRS: 25 For the previous year (Aug 2014 - Aug 2015) I lost about 3 lbs on average between visits to my ALS clinic, so about 9 - 10 lbs for the year. My FVC declined...
  9. LeprechaunSean

    PALS roll call Wednesdays ( or whenever)

    2016. It’s been five years with ALS now. It’s been a rough time but I’m still here. I can still walk a bit, my family can still understand me and my mind feels sharper than ever. 190 lbs now. That is a total of 9 lbs. gained since starting Lunasin in August. Here's to another 5 years........
  10. LeprechaunSean

    Is early onset indicative of Fals?

    I was was working out twice a day, running marathons and working 10-14 hours a day prior to onset. I have some articles on my facebook page about athletes with ALS. https://www.facebook.com/ALSeanTagert/
  11. LeprechaunSean

    Is early onset indicative of Fals?

    I have SALS. Symptoms onset at 32, diagnosed at 33. Whole exome tested, no SOD1 or C9ORF72. From what I have read, common denominators for early onset are athleticism, military service and intense stress.
  12. LeprechaunSean

    Making phone calls

    If you want to text people on their cell phones from your Tobii, just download an app on your android phone called "Mightytext" I've tried a few texting apps and it seems the best to me. Once you have it set up on your phone, you just open up their website on your Tobii and follow the...
  13. LeprechaunSean

    Making phone calls

    I use texting or email for all non face to face communication now. It's 2015 and I haven't had one instance yet where I absolutely had to use voice over the phone, whether my own or from my Tobii. Sorry I guess that's not very helpful. Most people are very willing to accommodate, I make...
  14. LeprechaunSean

    ALS Reversals

    yes unfortunately you do have to join as a distributor, but that doesn't mean you have to sell it. I will not sell it because I want to remain objective.
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