Recent content by Inventor

  1. Inventor

    Questions about a tracheostomy

    Over here getting a trache meant moving from wife and a caretaker to a 24/7 nursing team, all covered by the public healthcare. Since it is financially not an issue, life is good in spite of complete paralysis. Trache maintenance takes less than five min every other day. We do no suctioning from...
  2. Inventor

    Curcumin question

    Sauerkraut is good for calming the stomach.
  3. Inventor

    new neck brace that looks like it will work

    Won't work with a trache though.
  4. Inventor

    Cough assist

    Am I the only one using cough assist instead of trach suctioning, not in addition to it? Hourly sessions of 1*20, pressures +45/-66. Oscillation 3 Hz/4 mbar.
  5. Inventor

    Thoughts on Chemical Exposure causing ALS?

    After five years of intensive studying, my view is that ALS is an exaggerated response to cellular stress. Genetic part makes the stress granules too sticky and any environmental factor causing cellular stress can be the trigger. (Disclaimer: I am only interested in sporadic TDP-43 ALS; other...
  6. Inventor

    Suggestions/Comments - Dental Care

    You should not however push those of us who think dental care is not worth the trouble. If you never put anything in your mouth, the bacterial load is smaller than at healthy people.
  7. Inventor

    A question for PALS

    If it were not for ALS, I would never have met a number of wonderful people. Plus, who else gets their morning coffee served to bed every day? Still too busy to get bored.
  8. Inventor

    A question for PALS

    I am glad nobody had the idea that I should for some reason extensively talk about the consequences of losing my muscles, as if I was not capable of figuring that out myself (and I am glad to live in a country where choosing to live on vent is no financial burden for the family).
  9. Inventor

    A question for PALS

    Losing muscles was hard, because every day you had to adjust to a new disability. But once I had lost all except for the eyes, things eased up. Now I have been a bed patient for almost four years and life is good. I am glad I did not worry about the future after the diagnosis, would have been...
  10. Inventor

    Voice banking

    I don't see the point in voice banking. In a couple of months you start feeling any voice as your own. I mostly communicate by typing on the Notepad, but use a speech synthesizer with my five-year-old daughter or when I don't want to bother others to walk to my bed. The Finnish male voice...
  11. Inventor

    Taste of chili

    Complete paralysis is no excuse to skip the ALS pepper challenge. https://youtu.be/pBh-ugvuPyA
  12. Inventor

    Peg tube installed Friday... now what?

    My funnel has the angle at exactly 300 ml, which is my dose of food, water, coffee etc. Most nurses pour the food directly from the bottle into the funnel.
  13. Inventor

    Peg tube installed Friday... now what?

    The wound must heal three months before the tube can be replaced. My hospital does not store different size buttons, so they measured the depth of the channel after three months but installed a second fixed tube. After another three months I had a right size button waiting for me.
  14. Inventor

    Peg tube installed Friday... now what?

    I have designed a 3d printable funnel that fits snugly into the syringe: link to downloadable file
  15. Inventor

    Peg tube installed Friday... now what?

    An added benefit of the button is not having to worry about clogging the tube: the narrowest place is in the disposable part.
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