Recent content by ReginaS

  1. ReginaS

    fasting and keto

    This is very true. Better don't fast unless you want to speed up the ALS progression. My partner opted for no feeding tube and once he was unable to take in a healthy amount of calories because swallowing became too hard his generally fast progression became even faster. Even pre-ALS he...
  2. ReginaS


    I still remember the extra energy and tension these kind of experiences caused for me and my partner. It makes for strange discussions when the patient and caregiver tell people who consider themselves professionals and specialists that whatever they are thinking with all their expertise does...
  3. ReginaS

    CALS Concern/help

    My partner progressed quickly too. I read your post and my heart goes out to both of you. My partner died 16 months after diagnosis. In general, we spent time where he was most comfortable. If he did not feel OK in a place we would not go or we would leave. We went for many walks in the...
  4. ReginaS

    5y since...

    Very beautiful. Thank you.
  5. ReginaS

    Questions about BiPAP/Vent

    The advice on the trilogy settings that I got from Laurie here in this group was always most helpful. I don't know what we would have done without her. I had to make sure that our device stayed unlocked and that I could change/update the settings.
  6. ReginaS

    mouth scum

    My pALS had the same issue. He thought that the chemical consistency of his saliva had changed, that it cold not longer break down nutrition as it had done before. I used a tongue scraper with regularity. He took Nystatin too. Same experience. When he could no longer swallow thick liquids...
  7. ReginaS

    Swallowing air with bipap use

    I was firm with our RT and insisted that the settings remained unlocked so that I could change them. Then I emailed with Laurie and did exactly what she told me and sent feedback if necessary. You never know what you need between visits - which is a good argument for settings to remain...
  8. ReginaS

    It's been four years

    I contacted the Gleason Foundation as we heard that they have some product that was very customizable. We got a truly amazing response. They sent me the kind of measurements they needed. I measured everything and sent pictures of the bathroom/shower. We needed to measure my partner and...
  9. ReginaS

    How do you release your alertness?

    It really depends. I believe meditation and focusing on breathing was very helpful for me. However, I did not expect of myself to be right next to a person suffering from relatively fast progressing ALS with all its physical manifestations and be able to drop it all as soon as I had the...
  10. ReginaS

    Riluzole/ Radicava discussion...

    My partner had the choice at the time and decided against Radicava as ALS introduced enough changes... he did not want more limitations on his time due to all the infusions. His progression was on the faster side but he did not know that yet when he decided against Radicava. We know someone...
  11. ReginaS

    For better or for worse...

    Sending you good wishes and good wishes also for all your helpers and for your wife too. What a great team.
  12. ReginaS

    Ways to Adapt

    Welcome here. That's great what you did.
  13. ReginaS

    My heart is broken, but he is free

    I am so sorry to hear of your loss. It's hard that time with ALS and then without it but also without the loved one. Thinking of you.
  14. ReginaS

    Liver spots

    My partner (not so young) had an increasing number of benign moles on his skin (mostly under the hair of his scalp) that started growing and became very elevated and large in the few months before his diagnosis. He had them treated. It was very strange. There was a name for them - but I...
  15. ReginaS

    A three year and 13 day battle ends.

    Very sorry about your loss Wayne and thank you for the beautiful description. Wishing you much peace as you move into the next phase.