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Thread: List of all possibly beneficial equipment for a C5/6 Quad?

  1. #1

    List of all possibly beneficial equipment for a C5/6 Quad?

    So I'm being asked for a list by a local organization of any equipment that would help me live safely on my own. The top of the list would be a turning bed which according to my coordinator seems almost guaranteed to be approved along with a standing frame and since the standing frame is primarily a health related piece of equipment. I figured I would try to put in as many things as possible even if I'm stretching the whole living safely thing a little bit.

    They said they would help me get this equipment. I understand that they most likely will not get all of it but hey something is better than nothing right? I might as well try and get as much as possible.

    So far I've got,

    FES bike
    I put down that movement of the legs from electrical stimulation would help prevent deep vein thrombosis, arthritis, strokes, muscle related diseases, bone decay and psychological disorder. Anything else I can add?

    Hand bike
    I put down pretty much most of the same thing as the FES bike but is there anything else I should add for this one?

    Leg bag emptier for my wheelchair
    The reasons that I put down where more related to health regarding urine output, caretakers availability and fluid intake. I'm having trouble describing this in medical terms.

    Irypump/Peristeen
    Are there other similar products out there that I don't know of?

    Are there any other accessories for pieces of equipment for my home or wheelchair or vehicle that I don't know about or forgot about?

    I'm going to be asking my primary care doctor to write a prescription for these things so this organization can try to get it approved for funding. What kind of terminology should I be using?
    Last edited by Sythellri; 10-20-2017 at 05:13 AM.

  2. #2
    Sounds like a great organization that's helping you!
    Handcycle: If you can use one it may help you build arm strength to the best it can be. In addition it's great aerobic exercise, building up your respiratory function.
    Have you considered looking at every room of where you live to see what you need. For example, kitchen - are you able to fix a meal? Aids such as microwave, reachers, etc.; bathroom, etc. You may get some ideas by looking in the Sportaid catalog on line. And, maybe Google 'disability aids, etc.
    Many quadriplegic folks here at Care Cure can help.
    P.S. Read your profile and wonder if you're still in bed most of your day. Also, what is 'turning bed'? Sorry, have not heard that term.

  3. #3
    Are you requesting a turning bed, or a turning mattress? If the latter, you also need a good quality adjustable full electric hi-lo bed frame as well.

    A couple of other items:


    • Electronic door opener for your front door.
    • Environmental control unit (ECU). There are a number of these on the market, and you would need to specify the functions that you want/need. This can include such things as being able to adjust the room temperature, control a radio, TV, telephone, as well as open/close drapes, the door opener above (from bed or wheelchair), and even run controls for your computer.
    • Ceiling track lift (depending on where you will be living) or free standing track lift which fits over your bed. I am assuming you already have a mobile floor based lift (like a Hoyer); if not, add that to your list.
    • Also, bathroom equipment (not generally covered by insurance) such as grab bars, shower/commode chair or tub-slider system. Temperature control shower/tub faucets to prevent burns.


    I may think of some more, but meanwhile I would encourage you to download this guide to DME (durable medical equipment) needs for persons with various levels of SCI/D from the American Spinal Injury Association. It includes good justifications for this equipment and examples of all the equipment recommended: http://asia-spinalinjury.org/information/dme/

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  4. #4
    The turning bed I am familiar with is the Pro-Bed. http://www.pro-bed.com/

    I would hesitate to include that in your list unless you have had the chance to try it. Many of my clients find it uncomfortable (especially on their shoulders) and had problems with claustrophobia. A lateral rotation mattress (most of which are also low air loss = LAL) which goes on a hospital bed type frame might be more functional and practical.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    Quote Originally Posted by triumph View Post
    Sounds like a great organization that's helping you!
    Handcycle: If you can use one it may help you build arm strength to the best it can be. In addition it's great aerobic exercise, building up your respiratory function.
    Have you considered looking at every room of where you live to see what you need. For example, kitchen - are you able to fix a meal? Aids such as microwave, reachers, etc.; bathroom, etc. You may get some ideas by looking in the Sportaid catalog on line. And, maybe Google 'disability aids, etc.
    Many quadriplegic folks here at Care Cure can help.
    P.S. Read your profile and wonder if you're still in bed most of your day. Also, what is 'turning bed'? Sorry, have not heard that term.
    Yeah, it's actually a government organization surprisingly! The place where I'm living at right now really can't use anything that you have described since it's basically a remodeled garage with none of the amenities you described.

    Up until a bit ago, I was still laying in bed most of the day but I decided to try and change that so I've been trying very proactively quite recently.

    Quote Originally Posted by SCI-Nurse View Post
    Are you requesting a turning bed, or a turning mattress? If the latter, you also need a good quality adjustable full electric hi-lo bed frame as well.

    A couple of other items:


    • Electronic door opener for your front door.
    • Environmental control unit (ECU). There are a number of these on the market, and you would need to specify the functions that you want/need. This can include such things as being able to adjust the room temperature, control a radio, TV, telephone, as well as open/close drapes, the door opener above (from bed or wheelchair), and even run controls for your computer.
    • Ceiling track lift (depending on where you will be living) or free standing track lift which fits over your bed. I am assuming you already have a mobile floor based lift (like a Hoyer); if not, add that to your list.
    • Also, bathroom equipment (not generally covered by insurance) such as grab bars, shower/commode chair or tub-slider system. Temperature control shower/tub faucets to prevent burns.


    I may think of some more, but meanwhile I would encourage you to download this guide to DME (durable medical equipment) needs for persons with various levels of SCI/D from the American Spinal Injury Association. It includes good justifications for this equipment and examples of all the equipment recommended: http://asia-spinalinjury.org/information/dme/

    (KLD)
    I was planning on using a smart lock instead of an electronic door opener because I don't live alone and live with my family. My parents live in with me. Only reason why I would use a smart lock in stead would be that any caretakers I hire in the future would be arriving at early hours of the day when my family would still be asleep so I could issue temporary passcode's to those caretakers that only allow them entry from 7 AM to 9 AM or something like that. Would you recommend an electronic door opener instead?

    I wouldn't need an ECU because I live in San Francisco.

    I already have a freestanding track lift. I wasn't even aware it was called that.

    I don't think I can use any of that shower equipment because the shower system that I currently use may or may not be ADA approved.

    Quote Originally Posted by SCI-Nurse View Post
    The turning bed I am familiar with is the Pro-Bed. http://www.pro-bed.com/

    I would hesitate to include that in your list unless you have had the chance to try it. Many of my clients find it uncomfortable (especially on their shoulders) and had problems with claustrophobia. A lateral rotation mattress (most of which are also low air loss = LAL) which goes on a hospital bed type frame might be more functional and practical.

    (KLD)
    I am attending the abilities Expo in the bay area next week and I heard that they have turning beds and similar on display there so I will be looking around.

  6. #6
    Senior Member robotnik's Avatar
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    If I was a quadriplegic living in San Francisco I would like, for my arms/shoulders health, to have a Spinergy ZX-1 …
    C6-7 since mid 2002, no hand control nor triceps.
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  7. #7
    I thought you were wanting to move to someplace where you would be living independently...not just staying in your parents' home.

    Unclear about why living in San Francisco would have anything to do with needing an ECU or not?

    The electronic door opener can be used to actually unlock AND open the door. Open Sesame is probably the most popular: http://opensesamedoor.com/?gclid=Cj0...caAv6uEALw_wcB

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  8. #8
    Quote Originally Posted by SCI-Nurse View Post
    I thought you were wanting to move to someplace where you would be living independently...not just staying in your parents' home.

    Unclear about why living in San Francisco would have anything to do with needing an ECU or not?

    The electronic door opener can be used to actually unlock AND open the door. Open Sesame is probably the most popular: http://opensesamedoor.com/?gclid=Cj0...caAv6uEALw_wcB

    (KLD)
    I'm already working towards that goal where I can live independently but right now that's impossible. I tried applying for low income housing but low income housing in the San Francisco area is like $3000 a month? That's the below 80% poverty level that you need to qualify to even begin for most section 8 housing. For section 202, I don't qualify because I'm not age 62. The list is also extremely long.

    I tried expanding my search area a little bit to beyond San Francisco and into peninsula, East Bay and other areas but going back to school and finishing my degree to get a job seems to be a much better idea rather than sitting on my butt waiting for a list that may or may not even get to my name seems better. Staying in San Francisco and commuting from my parents garage is better than commuting from a hypothetical ADA accessible low income house in the peninsula.

    I'm still on the list waiting for low income housing but instead of just waiting, I decided to go back to school while waiting also. It's just I want to provide this list of various pieces of equipment that I can use to community living fund you see whether or not they can provide me funding to get it.

  9. #9
    KLD,

    I wasn't particularly recommended a turning bed or a turning mattress actually. I was simply googling and found the existence of these things then on this forum, I googled the former and assume that both were the same thing.

    Now, from my quick five minutes of googling, it seems that a turning mattress either inflates on the sides or sections of the mattress that rise up and down which turn while a turning bed seems to be something like a moving baby cradle?

  10. #10
    I use a Drive alternating pressure mattress myself I never have problems laying down. It seems to me you have a wonderful plan going for yourself. Can you transfer on your own? I wish I could, that would give me almost total independence aside from cooking
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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