Recent content by Atsugi

  1. Atsugi

    Trach issues

    Weltschmerz, (excellent screen name) I wish I had uplifting words or some factual data that would brighten your day, but all I can do is relate my own limited experience. I have had email correspondence with PALS who were able to use an Eye Gaze apparatus to surf the web. One PALS told me she...
  2. Atsugi

    An applause for the Hard Workers at the VA

    VA was good to us. Elsewhere, I found no one understood how to deal with paralyzed patients except the regulars at the Spinal Injury Clinic at the Tampa VA. Outstanding folks. Anticipated our challenges, provided practical solutions. All free. Must have cost the VA a quarter million to care for...
  3. Atsugi

    C9orf72 Mutation in General Population

    If I walk in to Mayo in Jacksonville and say, "may I have a c9 test, please," I'll get a test. BUT, however, I want to ensure we get the best tests for all the right things. Since Kevin Boylan retired, does anyone know the best ALS doc in Florida? Happy to travel, too.
  4. Atsugi


    I wish there was a different word to evaluate the quality of a man's sexual function other than his "performance." Is it like a baseball player's performance? Do you get more points for scoring? I can hear the thoughts of every woman, now. She's laying in bed and cracks the whip "Perform!"...
  5. Atsugi

    C9orf72 Mutation in General Population

    Nikki, I have question about the whole 50/50 thing. I have been told that if a one parent has the c9 mutation, then each child has a 50/50 chance of inheriting it. I have also been told that if you inherit it, you WILL get ALS at some date. But when I think about it, it seems to me that...
  6. Atsugi


    Thank you for sharing both the ups and downs.
  7. Atsugi


    Looks to me like EVERYBODY posting on this issue is totally right. I agree. Except for one thing--in a minute. It's great to have an active forum. I avoided other forums because I was never sure if the information was good enough to trust. But here, I'm very happy with the info. I guess it's...
  8. Atsugi

    Hi Everyone

    Great share, thanks, Marty. Great to hear from you.
  9. Atsugi

    Guess who?

    I remember that we talked about SO MANY THINGS. For a guy like me, who doesn't have anyone to talk to, it was a life-line! I especially liked the dinners and wine tasting trip and the boats and meeting the German lady from Berlin and helping that guy's dad connect with a VSO for the VA. I ate...
  10. Atsugi

    Guess who?

    TSA did absolutely everything they could, except a strip search, trying to make me miss my flight. All good.
  11. Atsugi

    Please help:(

    You don't know how they [doctors] can help you. I agree. You don't know. Find another general practice or internal medicine MD and let them lead the investigation. It might take years! But, just to be clear, we have helped you. We've narrowed down the list of things you might have. Scratch ALS...
  12. Atsugi

    A lawyer can screw you quite easily.

    No, I never pressed it. This happened in 2011 when my lawyer told me about it. In a twist, a couple years after Krissy passed, I went to my lawyer's office and found the landlord emptying it out. My lawyer was disbarred for taking money out of a trust. So I called the state and was told my...
  13. Atsugi

    Moving forward

    Ditto. What she said. Sue, I am so sorry. Anything you need, you just ask.
  14. Atsugi

    Urination and independence

    Hi, Christine. Welcome to the group. Thanks for your inputs on this. My PALS (Kristine), accepted a urethra cath when she was totally immobile--she was probably tired of me spilling her bucket. The nurse seemed to put it in and pull it out easily, but I'm sure it was uncomfortable. I told them...
  15. Atsugi

    Urination and independence

    It might be informational for male PALS if someone smart can explain why my experience with a catheter was so exceptionally painful. After my urologist removed my prostate (apparently with a wrench and a butter knife), somebody inserted a catheter into my urethra. I expected a few days of...