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  1. X

    Follower to Newbie

    She's doing remarkably well at 5 years. Uses Tobii to communicate with her eyes, can no longer walk but can stand under her own strength. Breathing and thicker foods are still ok. She has a remarkable spirit! I can't wait to visit! :)
  2. X

    Follower to Newbie

    Thanks so much Nikki! That's a great question with a neat story to it. I have a friend from childhood who was diagnosed with ALS 5 years ago. She lives in Arizona about 30 minutes from Mayo where she goes. She said she has a wonderful doctor there and mentioned my situation to him asking if...
  3. X

    Follower to Newbie

    Thanks Mike, very much appreciated. :)
  4. X

    Follower to Newbie

    Guys, I was seriously just kidding around. I wish you knew me better, I'm a very friendly loving guy. I love to joke around... my attitude is always positive. Unfortunately you saw the side of me that struggles with injustice and so you saw the defensive side of me. Not just for myself but...
  5. X

    Follower to Newbie

    I haven't had a good beating in a few weeks so I thought maybe it's time to write a new post! :) (I say this in jest) Contrary to recent advice the progression over the past few weeks have been downright terrible. I had a Video Fluoroscopy to see what was causing my swallowing problems. Both...
  6. X

    Follower to Newbie

    Would you just stop it already? It's just getting cruel.
  7. X

    Follower to Newbie

    Quick update. I've started having much more frequent swallowing issues. Most often it's just choking on saliva for no good reason, but now happening several times in a day where it used to be just once in a while. Ive had two occurrences now of swallowing issues when eating food, holy cow is...
  8. X

    Follower to Newbie

    Hi Mike, Thanks for the time... I think I totally get it now. You have spent tons of time with me, as have a couple of others and you certainly didn't have to. That says and means a lot. Those questions that I asked were really the things that I had been wanting to find out since joining the...
  9. X

    Thanks for the note Tillie... I totally get it now. :) Thanks for all that you do... for PALS...

    Thanks for the note Tillie... I totally get it now. :) Thanks for all that you do... for PALS, CALS, and those of us caught in between waiting to be cleared. My first 2 neurologists put ALS on my radar... I really had not clue what it was and when they brought it up I started learning. I wish...
  10. X

    So if I misunderstood, and I think I may have, that there really are just a small number of...

    So if I misunderstood, and I think I may have, that there really are just a small number of people here trying to help out those with the disease and it wasn't intended to be an open forum for these types of questions then I sincerely apologize. I don't want to take up your time or anyone...
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