Recent content by Jman37

  1. J

    ALS - effects on ability to urinate

    I am umn dominant and have severe urinary urgency. I hate to admit it but it was so bad the other day I peed all over myself. After this happening, I am much more careful to be near my bathroom after drinking fluids. This sucks because I drink tons of water all day as it makes me feel better...
  2. J

    Need advice on trache/Vent

    Thanks Kim, I got a scheduled appointment to see pulmo at Mount Sinai Beth Israel Clinic. They have seen records and stated they will plan scheduled trache very shortly after examination. Luckily, I got an appointment for next Wednesday. Traveling will be so hard, but, worth it in the end. I...
  3. J

    Need advice on trache/Vent

    Thanks Kim, I knew Dr. Boylan very well, his replacement Dr. Osscarson is in my opinion a horrible clinician. Yes, I saw Bedlack at Duke and to be honest very disappointed, I thought he would be more aggressive then he was. I saw Dr.Pulley many years ago. It seems to me clinics in Northeast and...
  4. J

    Thanks for your suggestion, I may travel to get the care I need. Very appreciated.

    Thanks for your suggestion, I may travel to get the care I need. Very appreciated.
  5. J

    ALS and Anger

    I'm a pals myself, and get angry sometimes over very little.things. I have no cognitive impairment, but the disease can get me charged sometimes. I am cared for by my elderly mother and nurses and try my best to be nice. ALS just messes with ones head badly. I have had it well over a decade and...
  6. J

    Need advice on trache/Vent

    Hello, thanks for the replies, I appreciate it alot. I just had appointment with pulmo today, and once again no plan on how to help me. I had a blood gas draw and CO2 levels are too high, at 35, when maximum should have been 29. I am surely not getting the help I need. Pulmo suggestion is to use...
  7. J

    Need advice on trache/Vent

    I truly appreciate the reply Laurie. I have also been to Mayo, Clinic, Jacksonville, Florida. Honestly it was a horrible experience, the director Dr. Osscarson did not want to even discuss a trache and vent, just palliative care. Fortunately, and I am .not bragging I have really good medical...
  8. J

    Need advice on trache/Vent

    I have had ALS since 2009, and I am at the point of considering a trache and have a few questions. I have had a slow progressing umn dominant disease phentotype, however, I have been struggling with breathing problems for the last five years. I have weak but working arms, barely any bulbar...