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  1. drewidia

    Unexpected Diagnosis

    Mumsie, sorry you are here, but welcome. Get your Neuro to get you into an orthotist (I think that what you call them in AU) and get a Ankle-Foot Orthosis (AFO) it's a special kind of brace and I can tell you first hand it was a god send for my foot drop - and I went from a cane to a rollator...
  2. drewidia

    Mitochondrial testing and future muscle biopsy

    I had a similar genetic negative outcome ... but OK on Riluzole and am content that I have something going. The blood tests are similar to what I went through for "paraneoplastics" given my younger age. It involved a whole set of blood panels looking for specific antibodies - and other...
  3. drewidia

    So I am anxious too

    As someone with Bulbar ALS, I agree with Igelb ... not even remotely sounding like bALS. In my case, I didn't self diagnose my speech issues - others heard it and started to point it out and ask me about it - and the docs heard it clearly. * As for the "reflex" (upper motor) test you...
  4. drewidia

    Thoughts on declining feeding tube?

    Agreed..it's a backup solution and will continue to eat for the time being. I find out more later today if the pulmonologist will clear me for having general - otherwise I'm going to look into another hospital group (via the ALS group) who knows this stuff better. Why general? My issue is...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. IMG_2795.jpeg

    IMG_2795.jpeg

    • drewidia
    • Media item
    • Comments: 0
    • Category: General discussion about ALS
  10. 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...
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