Recent content by hboyajian

  1. H

    Al--how was your check up at Sunnybrook?

    Al, I'm touched that you remember my name (Yep, I'm Holly). I still get a smile out of the animated fireman guy by your member name. My son is part of the Explorers program for teenagers with our local fire department. He is learning first aid, CPR, how to help out at the scene of an emergency...
  2. H

    Al--how was your check up at Sunnybrook?

    Hi Al, I don't expect you to remember me, as so many people come to this forum, but am grateful for the help you and others gave me several years ago when I was dealing with my dad's struggle with ALS. I check into the forum now and then to see how people are doing. I am glad to hear you are...
  3. H

    Andy's Swallowing & Pulmonary Function test

    Lori, I'm sorry Andy is having difficulty with swallowing and clearing his throat. Those were both disturbing problems for my dad also. He did not have bulbar onset, but developed swallowing issues in the last year of his illness. In his case, he adjusted by eating soft foods for about a year...
  4. H

    Osteopenia with ALS

    My dad was originally diagnosed with spinal curvature due to osteoporosis, as the reason why his back and neck keeled over and he could no longer hold his head upright. However, his bone scan came back indicating osteopenia rather than full blown osteoporosis. The doctor did not look any further...
  5. H

    Wavering emotionally

    Sandy, I am so sorry that your father is suffering such pain and difficulty. You are clearly a phenomenal advocate and caregiver for him. That alone is of great comfort to him, I am sure.I hope the morphine pump has eased his pain. I had a thought I wanted to share with you about the baby, his...
  6. H

    New to the site

    An additional thought...Your older child will be likely to look up ALS on the internet at some point, and will find scores of information, both true and false. If you can be proactive and help guide them to helpful medical sites (if they show interest in this) which you can explore together, it...
  7. H

    Question of ethics

    That is all really good, specific information. I wish My family had been informed about the possibility of donating the nervous system organs for research. I know my dad would have wanted that. Though in the end, I don't know how it would have worked out given the timing of his death (December...
  8. H

    My Mom

    I am sorry your mom is so close to the end of her time with you. You sound like a very caring daughter, attuned to her emotional and physical needs. I am glad you are able to be with her. That is a precious thing. I think the idea of an open house is just the thing since she has expressed she...
  9. H

    New Lithium based therapy announced

    I'm sorry to hear the Lithium was not helping you Al, and that your condition has worsened. There is always the factor of how a medication affects your quality of life with side effects in addition to the question about if it is making any difference regarding the primary illness. Sounds like...
  10. H

    Benecalorie?

    If your mom likes milkshakes, we found that this was a great way to get extra nutrition into my dad at the point he could neither eat solid food nor straight liquids. They were the right consistency for him to get down with his impaired swallowing, tasted good, and we could blend in protein...
  11. H

    Bulbar symptoms

    I think I have heard the following. The reason for not using oxygen treatment alone in ALS is that when the oxygen levels are raised artificially the body gets the message that deep breathing is not necessary. This in turn can impair the exhalation of carbon dioxide, which is not a good...
  12. H

    Hello all

    We were told the insurance covered the bi-pap only when the FVC was down to 50%. My dad had it prescribed before he reached that point because he had an ABG (arterial blood gases test) that indicated his carbon dioxide level was too high. Perhaps I am mistaken that it was his insurance company...
  13. H

    Hello all

    I also think that use of a bi-pap should be made available to every ALS patient upon diagnosis. It is unconscionable that insurance companies dictate what a person is eligible for rather than policies that make medical sense to provide people with the best possible health condition and quality...
  14. H

    i need an answer about weight loss

    I am so sorry, Jackie. This is heartbreaking to see your beloved suffering and slipping away. You have been down such a hard road, but the pain is no less close to the end even when you have known it was to come someday soon. My sympathies are with you at this difficult time. Sincerely, Holly
  15. H

    Hello all

    Hi Pat, I'm sorry I sounded abrupt in my first post. I accidentally hit the send button without typing an introduction, then somehow couldn't go back to edit to say hello and welcome. I agree with you that the bi-pap could help, and I find it troubling that they are making you wait so long...
Back
Top