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  1. ReginaS

    How to cope

    I'm so glad you made it! Much luck and energy for the care. I hope you can get the equipment that you need and that it makes a difference.
  2. ReginaS

    How to cope

    I would not have known the following had I not lived with someone with ALS. If getting air is a problem and the patient does not want to use BiPAP, most likely - at least here in the US - hospice will provide morphine and ativan to help a patient find comfort. When this starts (without use of...
  3. ReginaS

    ALS like wildfire

    Hi Kingston, so sorry for your loss. My life did not go as planned either. :cry: My partner had 16 months from diagnosis to the end and he was diagnosed rather quickly. He used BiPAP but declined the feeding tube. It took me a long time to recover from watching him lose ever more abilities...
  4. ReginaS

    Care chair / Hoyer alternative recommendations?

    Hi, I am no specialist in these things -- for my PALS it would not have worked as the back of the seat does not recline. If your wife has core and neck strength it might work as long as she has that. My PALS loved his power wheel chair and would not have wanted to sit in something where he...
  5. ReginaS

    Worried my symptoms could be ALS.

    Hi Lucie, "After 3 assessments by the doctor assessing my strength and reflexes should I let go of this ALS concern?" - It would seem like a wise choice to do so. Time is too precious to spend it worrying. I used to worry a lot and found what Mark Twain says is really true: "I've had a lot...
  6. ReginaS

    Longtime left foot drop

    "My neurologist said it wasn’t ALS because of how long I’ve had this problem." This is true. Believe them. "It actually started with a lot of pain in the front of my left foot" ALS does not start with pain. With ALS, foot drop can develop but once it's there it does not go away. It's not...
  7. ReginaS

    PALS opposed to feeding tube

    My PALS chose "no feeding tube". He was diagnosed w/ limb onset but honestly, bulbar either developed parallel or right after. He progressed fast. 16 months after diagnosis he died. He did was very slender. Nurses, physicians, nutritionists and then palliative care advised/urged him to get...
  8. ReginaS

    Hospice pros and cons

    You might read this in other posts: we had all our DME in place before contacting hospice. Then called hospice organizations (there might be 3 in town) and negotiated with them that we could keep using the equipment. They did not let us use the same but wanted for us to give them back and...
  9. ReginaS

    Introducing Myself - And Question about Guilt Over Delayed Diagnosis

    Have been thinking about regrets: When it's something like a diagnosis and I have strong regrets - I might be trying to open a back door out of feeling so very helplessness towards the present situation - i.e. that I really cannot change it but deep in my heart I would love to do exactly...
  10. ReginaS

    50 ways to leave your clinic

    For the sliding: have you tried to cut up a yoga mat and put the piece(s) on the recliner to prevent sliding? I used to do that for areas that were too slippery. Our recliner was too deep. We made a construction out of pillows and sewed a cover over the pillows that we fastened to the...
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