Recent content by JLRNL

  1. J

    Looking to buy a Tobii i15 dynavox

    I have one that has not been used. You may have it at no cost, just pass it on when you are done with it.
  2. J

    Condition Update

    It has been awhile since I posted. My condition has deteriorated to a point. Since my last post we have returned to the USA from Europe to be closer to the children and grandchildren. I consider myself one of the fortunate ones since it appears that my ALS is of a slower progressing type...
  3. J

    Do you think people know when the end is near?

    Yes, people know when the end is near. I have worked with the terminally ill the past 28 years and we always listen to the person, they know. Now that I'm terminal myself, I understand those feelings.
  4. J

    Are you serious?

    This is not a joke but felt this would be the right place. Went tonight to the ER for chest pains. When the ER physician was told about my ALS, he asked me what the prognosis was. I thought ''are you kidding me". They admitted me for observation, the cardiologist with two interns and a...
  5. J

    Our place

    I love the people that complain to me about their colds,flu arthritis and other ailments. They come to me for advice because of my medical training. I'm just to exhausted to do it anymore, so now I just ask, wanna trade? Snaps them back to reality real quick!;)
  6. J

    What diagnosis for SSDI or VA

    The problem with the VA is too many MD's involved, with residents and students. Each time you go, you have the chance of being examined by a different neurologist that may or may not be certified in neuro-muscular diseases. So they all have different results in exams and how they conduct them...
  7. J

    It makes no sense!

    I have been attempting to get compensation for ALS from the VA. Since the process and appeal system was taking so long, I decided to ask for a pension instead since I'm unable to work. With in one month I was approved for the pension because of the inability to work. Now here comes the...
  8. J

    Going on Hospice then off?

    Under medicare hospice is divided into certification periods to a point of unlimited periods. If you elect to come off of hospice you would forfiet the remainder of that benefit period. You can re-certify for a new period and then continue again. It is not difficult, you would need to change...
  9. J

    My Horror Story

    Here is the response, I have edited the names out pending possible legal action. It is interesting they do not comment on the behavior of the neurologist. They offer a refund out of "good will", to me good will means we messed up please don't sue us. I never requested a refund, I just...
  10. J

    My Horror Story

    Update coming, I heard from the University Medical Center after my complaint, interesting indeed. I will post as soon as I figure out how to get it from the mail sight of the University.
  11. J


    While in the States last month, I became aware of another one of those "Really" experiences with ALS. We were staying at a motel with a swimming pool, well I always make use of a swimming pool it makes me feel better, at least in the past. As I eased into the pool, the floating sensation was...
  12. J

    My Horror Story

    After reading comments by all the contributors, I decided to make an official complaint with the University. I'll keep you up on what the response is. We'll see what happens if anything, I also asked for a full refund.
  13. J

    My Horror Story

    I have learned patience through the years. This man is also the director of the ALS clinic at his University. In the Netherlands the system is the one Obamacare has been patterned after and it stinks. I takes forever and the MD's are still looked after like gods. Also being a medical...
  14. J

    My Horror Story

    Dx. is probable ALS
  15. J

    My Horror Story

    163/116 Later it was 150/90