Forum Replies Created

  • Tim Burr

    Member
    April 6, 2021 at 4:12 pm in reply to: Oh my COVID vaccine

    We had both shots with NO reactions. We have asked our friends of all ages and health status about reactions, and there seems to be no common response. Our daughter-in-law had a reaction after the second shot, but our son had virtually nothing.

    Tim

  • Tim Burr

    Member
    November 4, 2020 at 4:04 pm in reply to: Respiratory onset?

    Hi Leslie,

    Thanks for passing on this information. I will see if I can get the Atrovent. It certainly would be a lot better than all the soggy tissues in newspaper bags.

    Tim Burr

  • Tim Burr

    Member
    September 22, 2020 at 3:01 pm in reply to: Rilozole experience?

    I can’t get up in time to take the first one an hour before breakfast, so I take it two hours after (which is more than an hour before lunch). Then I take the second one when going to bed, which is more than two hours after supper. Seems to work for me.

    Tim Burr

  • Tim Burr

    Member
    July 2, 2020 at 2:48 pm in reply to: Respiratory onset?

    Hi all,

    I started with difficulty lifting things in front of me. Never a problem before. Had some PT, but one of exercises called for me to lie on my back on the equivalent of a pool noodle. I realized that my chest was not lifting when I inhaled. About two months later in September 2019, I walked to work because it was raining (I have been bicycling to work for 40 years, but not in the rain). While my walk was only seven blocks, I had to stop three times to catch my breath. That started my tour of doctors. i also was having difficulty sleeping, waking about every hour to go to the bathroom. Then i would pant in the morning when I came down to breakfast—and sometimes fall asleep during breakfast and at work. Finally in January 2020 I was diagnosed with ALS and got a BiPAP breathing assist machine. Once I was using it through the night, I slept fully. A great relief. Just make sure you have someone who will come to you to make sure you have the right masks (I use two after going through a number to find the most comfortable) and the air flow is adjusted correctly. The respiratory therapist needs to see how you sleep to make sure everything is set up right and to explain what you need to do to make the most of the equipment and to be comfortable. That is where the various masks come into play. I use the BiPAP occasionally during the day as needed, usually during a nap.

    The only drawback to the BiPAP is that my nose runs like a faucet for about an hour after I get up. If anyone has an answer to that, I would love to hear it.

    Tim