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Type: Posts; User: trainman

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  1. Replies
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    I'm a C2/3 vent dependent quad and just hit 34...

    I'm a C2/3 vent dependent quad and just hit 34 years post injury, I was three. This winter has been tough and I have been feeling the depressed mood as well. Seeing everything my family goes through...
  2. Thread: DNR tattoo

    by trainman
    Replies
    30
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    25,199

    It's important to let those around you know your...

    It's important to let those around you know your wishes as well. I did my advance directives several years ago and did put in DNR. As a result, I wear a DNR bracelet to let medical personal know my...
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    Happy 2018 everyone!

    Happy 2018 everyone!
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    7,299

    I am still looking, I'll give a call tomorrow. Do...

    I am still looking, I'll give a call tomorrow. Do you have any pictures? Thanks.
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    7,299

    Looking for RT300

    I am looking for an RT300 10 or 12 channel for legs. I started using one last year at a rehab place an hour away and it has worked well. After 31 years of no useful movement in my legs, it's great to...
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    We've had this issue before. I'm not sure if it's...

    We've had this issue before. I'm not sure if it's pride, or what people think of it. I know that they have said that if they asked for help, they don't feel like they could do anything. A scenario...
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    13,383

    I don't have any hand control, so I need to have...

    I don't have any hand control, so I need to have my caregiver get the electrodes setup. What are the seats like? I would be afraid of not being able to sit in it and having to try to get a lift to...
  8. I've been a high level, C2/3, vent dependent quad...

    I've been a high level, C2/3, vent dependent quad since age 3, 31 years ago. Those who have been around these forums long enough know I was working on discontinuing my vent (now diaphragm pacemaker)...
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    I have looked on Ebay, but haven't found anything...

    I have looked on Ebay, but haven't found anything yet. My wrists and fingers aren't flexible enough anymore to do anything other than leg stimulation.

    I do get odd looks rolling in to the hospital...
  10. Replies
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    13,383

    Funding for FES bike

    Last summer, I got to try an FES bike for the first time. It worked well, completely stopped spasms for several hours, and felt GREAT to have my legs moving again. I went up to Des Moines, about an...
  11. Thread: Bed Mattress

    by trainman
    Replies
    15
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    9,574

    Private insurance covers most of my equipment,...

    Private insurance covers most of my equipment, including mattress.
  12. Thread: Bed Mattress

    by trainman
    Replies
    15
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    9,574

    That looks very similar to the current system...

    That looks very similar to the current system which does (did) work well. Thanks.
  13. Thread: Bed Mattress

    by trainman
    Replies
    15
    Views
    9,574

    Hi KLD, nope I can't move a thing (C2/3 vent...

    Hi KLD, nope I can't move a thing (C2/3 vent dependent). My night caregivers turn me every 2 hours. I tried one of those mattresses at Craig, my lung collapsed after 3 days.
  14. Thread: Bed Mattress

    by trainman
    Replies
    15
    Views
    9,574

    Bed Mattress

    What does everyone use for a bed/air mattress? I used to use a KCI low loss air mattress that had a pump to keep it inflated. It was getting pretty bad with me sinking in, so I got a replacement a...
  15. Since my last update, I have done an appeal...

    Since my last update, I have done an appeal through the Iowa Insurance Division and they agreed I still need care. Therefore, night hours through the nursing agency are being covered by insurance....
  16. I am looking at a place Friday that may be able...

    I am looking at a place Friday that may be able to take me if I don't get more funding. It's supposed to have Internet, but I don't know how good and if I'll be able to continue my web business. It...
  17. Yes KLD, Cheesecake and I have been working...

    Yes KLD, Cheesecake and I have been working together quite a bit. So far, media hasn't been interested in my story, but I'll be trying again.
  18. It has been a while since I updated, but the...

    It has been a while since I updated, but the latest progress is now posted. Unfortunately, they said no to continuing funding for nursing care.
    ...
  19. Sorry to hear forest. Living in rural Iowa, I...

    Sorry to hear forest. Living in rural Iowa, I know all too well the problems with finding caregivers. Unfortunately, I think it's going to only get worse.

    For my update, I did get another 60 days...
  20. Thanks for the encouragement. I spoke with...

    Thanks for the encouragement. I spoke with Cheesecake yesterday and have a few more things to try that are in progress. One is further work with Senator Harkin's office. I still have a week to go, so...
  21. Already read, thanks KLD.

    Already read, thanks KLD.
  22. Sorry for late replies, we finally had nice...

    Sorry for late replies, we finally had nice weather yesterday and I wanted to get out while I was still "free." What we're waiting to pass would cover the hours of care I get now. One caregiver will...
  23. I haven't had anything yet, and May 7 is getting...

    I haven't had anything yet, and May 7 is getting closer.
  24. Anything I've read or experienced has had a...

    Anything I've read or experienced has had a maximum of two hours in one place. Any time I'm in a hospital, I get moved every two hours, if they don't move me for something else. I guess it might be...
  25. Unfortunately, I've contacted the two closest...

    Unfortunately, I've contacted the two closest ILC/CIL offices in the past to see about caregiver coverage options, but they never return my phone calls. I have a friend who was Miss Wheelchair Iowa a...
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