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  1. drewidia

    Thoughts on declining feeding tube?

    Annlee so up till last week I was 100% against both the Trach (which I basically still am) and PEG. I'm 100% for NIV all the way. I flipped on the G-Tube (PEG) last week to 100% to get one but not use it. I have spoken to a number of other PALS in recent weeks and they turned me towards...
  2. drewidia

    Newly diagnosed FTD - MND (yes ALS)

    Jim sorry to hear about your diagnosis, but I'm glad they have gotten to the center of the tootsie pop and the rest will start to streamline and focuses your care. Deb sorry to hear about your dad. This disease sucks and I can only suggest that every day a little something goes away but I'm...
  3. drewidia

    Power Lift Chair Part II

    Johnny, just got back from a trip to another facility up north, so sorry for the delay. Did you get in touch back with the store? They are a family owned biz. One thing I would suggest is for you to reach out to your local ALS support group and find out about "donations" - they tend to...
  4. drewidia

    Mitochondrial testing and future muscle biopsy

    So my results came back and there was a finding of unknown clinical significance he seems focused on - now wants a muscle biopsy too This all has to do he said with sporadic vs genetic als - I’m cool with doing it if it helps pay it forward The geneticist appt is going to be after the biopsy...
  5. IMG_2795.jpeg

    IMG_2795.jpeg

    • drewidia
    • Media item
    • Comments: 0
    • Category: General discussion about ALS
  6. drewidia

    Curious about support

    Echoing Nikki's point... I thought places like ALS Alberta etc do loaner and advocacy similar to the US. In Chicago we have several amazing support organizations including Les Turner and others who work the ALS Clinics (which are incredible albeit a whirlwind tour and I would strongly suggest...
  7. drewidia

    Choking

    Before my diagnosis I had tried the lifevac... it's basically only somewhat useful for objects (solid) ... was an epic fail for the mucus stuff... If you have thick secretions nebulizers help thin the mucus... but the cough assist device really the big help for me...
  8. drewidia

    "Could I have bulbar ALS?"

    Aytac, I would echo the statements folks are telling you above. Nothing rings ALS and you are going to drive yourself sick - listen to your doctors. Never use GPT to diagnose it hallucinates (which is the points made above), but it can help you look-up and recenter the chat around Vitamin D...
  9. drewidia

    Newly diagnosed FTD - MND (yes ALS)

    Wow, my FTD starting path is very similar - my diagnosis dates back to early 2024 on that part... apathy, weakness, spasticity, (UMN) slowing, word finding (typing isn't same as speaking)... except I had the overeating and sweet tooth - until a radical change a few months ago, and the eat thing...
  10. drewidia

    Exposé of Dr. Goodenowe in Canada

    100% - Upvote for Karma. These people need to be brought to justice to prevent them from hurting others. It's Unfortunately a sign of the world we live in, and thank God that 99% of people out there driving for a cure are legit. There are bad apples in the bunch. I'm still quite hopeful...
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