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  • Users: Mark
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  1. M

    George home with the lord

    Patty I'm so sorry to hear about George. How are you managing? I could not respond sooner because I have a new talking trach there was not operable until the last few days and is still troublesome. Please stay in touch. Mark
  2. M

    Has anyone heard from Mark?

    Hi Hi Patty, Sounds like George is doing fairly well. I am glad. I forgot to mention my legs are starting to show some weakness which first manifested as difficulty climbing steps. Fortunately I can still walk without noticing any trouble there. Thanks again for your support. Hope you're...
  3. M

    Has anyone heard from Mark?

    Thank you Hi Patty and George: Thanks so much for your concern. My tracheostomy has led to far more pulmonary complications and hospitalizations for bronchitis and pneumonia I ever expected. My diaphragm has continued to decline and as of yesterday I am on the ventilator around-the-clock but...
  4. M

    Tracheostomy and ventilator

    Thanks Cindy.
  5. M

    Tracheostomy and ventilator

    Thank you both for your response and your prayers. I will have the procedure is coming Friday, 12/19. Take care. Mark
  6. M

    Tracheostomy and ventilator

    I had fluoroscopy this week showing at least half my diaphragm is paralyzed. I will be having a tracheotomy Friday and use a ventilator at night. My pulmonary specialist feels this will help my daytime functioning. Have any of you had any experience in this area? I would be interested in hearing...
  7. M

    Lithium

    Thanks Al. I figured if it was effective or at least helpful in some fashion it would be all over this forum. The woman I saw for one session was young and I don't think she had any experience with motor neuron disease. With the onset of respiratory symptoms I think I'm becoming more scared...
  8. M

    Lithium

    Thanks Dan. I was also wondering whether anyone has had any experience with or comments about acupuncture for our condition or is it more snake oil? Mark
  9. M

    Lithium

    Thanks Dan. I did try the mask with nasal pillows. We could not get them to stay in place correctly so we gave up on that one. The lab I am working with has another one to try or possibly two. One of them is a Total face mask which does not press on the nose. I don't know how the airflow...
  10. M

    Lithium

    I am supposed to be using a bipap machine but after 4 1/2 months I have not been able to find a mask that works without causing skin breakdown on my nose. Fortunately I changed to a different sleep lab where they're willing to work with me the previous one gave up because they didn't stock...
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