Recent content by MarciaA

  1. M

    Hey, Barb! It's been forever! It's closing in on two years since Kathy died and I'm still...

    Hey, Barb! It's been forever! It's closing in on two years since Kathy died and I'm still missing her very much. I know you've been through hell and back with Gail and your mom. I hope you are holding together and would love to hear from you. Take care and stay warm! Marcia
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    question about transferring patient w/ feeding tube

    nwafriend, My sister had a PEG tube put in last fall and was using what we called a "Barbie stand" for transfers. She needed to use her arms for that one as well, but here's my point...the belt for the stand fastened around her chest (right under her bra) and it didn't hurt the tube at all...
  3. M

    My Mom

    Kaija, My sister died Feb 28th of this year after living with ALS for about two years. She lived in St. Paul as well and had marvelous Hospice nurses that came in to check on her. She went downhill fast in the last 2 weeks of her life. Her breathing became much more difficult (she also hated...
  4. M

    Gardening?

    My sister was also an avid gardener. My husband and I helped her purchase several large self-watering pots for her plants and veggies and then we built garden paths to go around them. She was able to wheel around in her chair and we planned the raised platforms to be at the right height so...
  5. garden paths web.JPG

    garden paths web.JPG

  6. M

    Forming a care team

    Holly, When we went about starting my sister's care team, we consulted a book. I'd have to find the book now to make sure I'm getting the name right, but I think it was "Share the Care". I can't remember the authors. It was extremely helpful and gave lots of suggestions about how to run the...
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    suction apparatus advice?

    My sister had a cough assist machine...we gave it about a D for a grade. There was a time when she was trying to cough up some phlegm but it was too low for the suction machine to reach. We tried the cough assist, but if it wasn't timed perfectly with her inhale and exhale (which were very...
  8. M

    The end and beginning of a journey

    Kathy passed away today around noon. She battled ALS for two years...mourning each loss but quickly adapting to it through the help of her loving husband, wonderful friends, and the technology that allows it to happen. She had progressed very rapidly the last couple weeks and after a rocky...
  9. M

    Strength, Hope & Persistence

    Congrats, Swmn! Let us know the station and maybe we can watch it on the web once it airs! KARE11 (Minneapolis/St. Paul station) did a couple stories on my sister. It really helped to raise awareness of the disease and I made lots of new connections through the pieces. People with ALS...
  10. M

    shopping for a bidet

    My sister has a Bio Bidet 1000. There are different levels of them. Hers has a remote so you don't have to turn around to press any buttons. She likes how it works for her and I think it was pretty easy to install. Not sure how expensive it is, but I'm sure you could Google it and find out...
  11. M

    Bracelets for ALS Research

    That's fabulous! Besides this site, how are you getting the word out about the bracelets? Also, how are you managing the cost of the beads? Are you getting a local buisiness to sponsor it? Congrats on the $80,000! That's VERY impressive! Marcia
  12. M

    Post things to cheer up people

    A new pastor was visiting in the homes of his parishioners. At one house it seemed obvious that someone was at home, but no answer came to his repeated knocks at the door. Therefore, he took out a business card and wrote “Revelation 3:20″ on the back of it and stuck it in the door. When the...
  13. M

    shopping for a bidet

    My sister has an excellent one that she likes a lot. I don't recall what the brand is or how expensive it is. I'm going up there tomorrow and will try to remember to get all that info and bring it back to the forum. Marcia
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    Hospice care

    Well, I found out last Wednesday that my sister signed up for Hospice Care (at home). She now is on oxygen most of the time, has a hospice nurse come in for care and information, and has a "comfort care" kit (morphine and other meds). A nurse friend of mine told me that generally hospice...
  15. M

    Post things to cheer up people

    A blonde wanted to go ice fishing. She'd seen many books on the subject. And, finally getting all the necessary tools together, she made for the ice. After positioning her comfy footstool, she started to make a circular cut in the ice. Suddenly, from the sky, a voice boomed , "THERE ARE NO FISH...
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