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  1. P

    How are others faring with respirator care?

    Thank you, Sharon. I feel embarrassed to admit that I have a lot of caregiver help when I see that you are working solo what must be 98% of the time. I am 76 and truly believe I could not do that. Your second and third paragraphs are also true for us. Because of my age, I am avoiding drugs...
  2. P

    How are others faring with respirator care?

    Yes, I would like to e-mail with someone who has done this kind of care in the home. I have met one other whose husband was on respirator care but he was in an institution courtesy of the Veterans Administration so it was very different. I am definitely getting to the state where "the spirit...
  3. P

    How are others faring with respirator care?

    Yes, "harvesting the moments" is a good phrase for trying to focus on the positive moments. It is true that when care becomes more demanding, the demands of the disease become more prominent in my mind. Hence harvesting the moments takes more focus. Thank you
  4. P

    How are others faring with respirator care?

    Thank you for the empathy. I will say that my love has to be there to have done this for six years beginning at our 50th anniversary. We had 50 really good years which make for strength. Still very difficult though.
  5. P

    How are others faring with respirator care?

    After six years of PALS' ventilator care, my energy is flagging. My PALS will be 79 in November. He had respirator onset diagnosed in July 2013 and required a ventilator to continue in this life 10 weeks later. During that time he has lost the used of his limbs almost completely, rejected eye...
  6. P

    support for children and grandchildren of PALS

    Dear Kate, Thank you for your response. If you have a chance, please share with me how things have progressed for your husband and yourself as his caregiver. There are so few with respiratory onset. Pinky
  7. P

    Hello Starente, I have not been on the forum in a long time. My husband just marked five years...

    Hello Starente, I have not been on the forum in a long time. My husband just marked five years on a ventilator, trached at age almost 73 with good limb function. He now has lost all of his motion except for facial expressions, just turned 78. He has been remarkably good humored and patient...
  8. P

    support for children and grandchildren of PALS

    Hello Kate, We are still going here with Mike, my husband using a ventilator and now GJ tube to sustain his life. He began in Oct. 2014 with functioning limbs, the ability to walk, talk with his cuff down and use his hands very well. He is now almost completely without motion in his limbs...
  9. P

    support for children and grandchildren of PALS

    I was personally very grateful to see a camp offerred to the minor children and grandchildren of PALS. As a CALS I was overwhelmed with gratitude when I saw the notice. Just wonderful, I thought, I wept and sent the notice on to my daughters in law who might want to participate with our...
  10. P

    I sure understand that overwhelmed feeling. It is so difficult when breathing is first to fail...

    I sure understand that overwhelmed feeling. It is so difficult when breathing is first to fail as all the issues must be faced so quickly. I send my understanding and encouragement. I hope you are able to gain some assistance from friends or family. Perhaps you could teach them what you know.
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