Recent content by Pkmado

  1. Pkmado

    Decisions

    Phil and I had met a couple at a Christmas Party. The gentleman had been into his diagnosis for about a year and was very far advanced in such a short time. When my husband passed I touched base through friends to see how he was doing. I offered Phil's power wheel chair and our van that we had...
  2. Pkmado

    peaceful passing

    My husband also had a peaceful passing even though there is nothing truly peaceful about ALS. I take great comfort as you must that he did not anticipate the moment of his own passing. If there are any gifts to be had with this Nasty disease a peaceful passing is one to be grateful for. I just...
  3. Pkmado

    Thank you

    To thank everyone on this forum who ever answered a question, shared in the pain, took the time to console or just shared in the experience whether it be difficulties or joys. Phil and I took great comfort in knowing we were not alone. I am most thankful that we did not anticipate that the time...
  4. Pkmado

    time for nursing home

    Do not underestimate the helping hand of Hospice care. Call them, he will qualify. My husband is VA and after his PEG insertion there were difficulties. A good friend suggest hospice. We were a bit put off at first but find their help invaluable. My husband after a couple of years has now moved...
  5. Pkmado

    Such is the journey

    Your post has reached in and touched my soul. May Peace be with you.
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  10. Jade and Baby Arielle

    Jade and Baby Arielle

    Visit from my dear step daughter from FL and month old child. Thank you for stepping up to the plate and giving so much to your Dad from so far. It means so much our daily baby pics, text messages and phone calls. It the little things that mean so much.
  11. Pkmado

    Pity Party coming on!

    Sorry early in the am after a sleepless night. Phil just said I would never make a career out of nursing. Blood Pressure of course. Aspirators, nebulizers, BiPap, vpap, BP oximeter, I miss the old lingo. Hungry babe? What do you want for dinner?
  12. Pkmado

    Pity Party coming on!

    Barbie for fear of sounding ignorant, what's BP? Phil has those sweats everyday. We spoke to his nurse and also our friend who is a nurse and no one answered it more than take his shirt off which we do. We are moving rapidly into unchartered territory.
  13. Pkmado

    PALS doesn't like BiPAP

    My husband has been having ByPap issues. He went in for a PEG and they tried to use it. His arms are paralyzed and they left it on him and left him alone. He panicked and no one answered his buzzer in a fair amount of time. He could not pull the mask off and they found him choking. We have a...
  14. Pkmado

    Have a nice day

    I just don't know if I was just so relieved to emerge from the tunnel, my guy and me, after Phil's nearly starving to death waiting for the PEG to happen. The hospital debacle and then relief at being home and Phil's gaining 4.5 whole pounds and life just now getting back to normal. (Welcome to...
  15. Pkmado

    suggestions for housing/low income

    Dreams of independence die hard. With a feeding tube he will need daily attention, several times a day. A once a day visit will not suffice. Barbie seems to have the only logical answer, looking into nursing home care through disability. By the time he gets set to get into an apartment he will...
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