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  1. K

    Biwaze cough assist

    I use a Philips cough assist that has two modes. One with just forced air and then suction on the exhale. It also has a flutter valve function where it feels like I’m getting percussion therapy. I use this in conjunction with my nebulizer and it can sometimes cause emesis along with the...
  2. K

    Limb onset changing over to Bulbar

    Does this or can this happen? I asked my MND doctor and he told me no it doesn’t cross over. But it sure seems like I read something on this site? I searched but couldn’t find anything.
  3. K

    Has anyone applied /received the Housing Grant Funds as they increase over the years ?

    I was told 117K last week. After talking to a contractor me and my wife decided against remodeling or adding an addition. We just built this house in 2018. We chose plan 4. Which is apply that money towards the principal of our mortgage. Which is great because I also qualify for life...
  4. K

    Positive EMG

    ALS diagnosis is now in the chart. Yes and no on the meds. Because of my severe constipation I have been having blood in my stool. So GI consult first. It is a relief to know. And my wife agrees with you about another emg. So much so fast. There is a part of me that doesn’t want the...
  5. K

    Positive EMG

    The right leg was negative but he stopped at the right arm. Should I ask for an EMG of my SCM? It’s more atrophied than the right arm and shoulder. I have cared for many ALS patients in my 30 year nursing career. However, by the time they get to me the question answer window has closed and...
  6. IMG_2953.jpeg

    IMG_2953.jpeg

    • KevinR
    • Media item
    • Comments: 0
    • Category: Primary lateral sclerosis
  7. K

    Is this right?

    The dollar’s is because the ALS or presumed ALS diagnosis comes with a a VA compensation package that is a lot of money to the veteran. 100 K house remodel, 26K for automotive, extra special monthly compensation somewhere around 2K, wife will get a raise for caregiver support pay somewhere...
  8. K

    Is this right?

    Thank you! The only important part is survivor’s benefits at this stage. Some changes that are confusing. I am right side dominate. You can see the change in my neck. When I swallow the right side does not move at all. I have an indention distal and proximal of my collar bone. The...
  9. K

    Is this right?

    I used that and one more on my claim as a PLS variant to ALS. I was denied. I didn’t appeal because when I filed all gulf war presumptive’s I came in at 160%.
  10. K

    Is this right?

    Reading between the lines. It feels as if money is the reason for withholding an ALS diagnosis or even a presumed ALS diagnosis? Which is all is needed for filing the claim. I currently have provisional ALS documented with my PLS. I think because I have waited almost a year to ask for a...
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