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Thread: Questions for high level quads...

  1. #1
    Junior Member
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    Questions for high level quads...

    Hi,

    I'm a 35yo C5 complete quad 6yrs post and I was hoping to get some advice from others on how they manage certain aspects of their lives.

    Basically I'd like to know if there are any high level quads who live somewhat independently (those that don't have 24 hour care) and how they manage things. What type of living situations do other quads have? How do you manage things like autonomic dysreflexia when you are on your own? What type of emergency systems do you have in place?

    My present situation is that I'm living at home with my elderly mother (61) as my primary carer (doesn't do any physical personal care, I have an attendant care package that delivers personal care), it's just the two of us as my father is no longer with us.

    A few nights ago I was asleep in bed and I woke up with mild autonomic dysreflexia (a kinked superpubic catheter) and it was getting worse and a very fast rate. No matter how much I screamed I just could not seem to wake my mother (seems to be getting harder) and I honestly thought that I was done for. Luckily enough I finally wet myself, which dropped my blood pressure and little and then after what seemed like an hour or so of yelling I was able to wake my mother to fix my catheter.

    The above situation got me thinking that surely there are quads out there who do live on their own, who don't have someone to scream to for help and if so what emergency systems do they have in place to manage a situation like that.

    Thanks in advance for any help and advice it will be greatly appreciated.

  2. #2
    Quote Originally Posted by Linx350 View Post
    Hi,

    I'm a 35yo C5 complete quad 6yrs post and I was hoping to get some advice from others on how they manage certain aspects of their lives.

    Basically I'd like to know if there are any high level quads who live somewhat independently (those that don't have 24 hour care) and how they manage things. What type of living situations do other quads have? How do you manage things like autonomic dysreflexia when you are on your own? What type of emergency systems do you have in place?

    My present situation is that I'm living at home with my elderly mother (61) as my primary carer (doesn't do any physical personal care, I have an attendant care package that delivers personal care), it's just the two of us as my father is no longer with us.

    A few nights ago I was asleep in bed and I woke up with mild autonomic dysreflexia (a kinked superpubic catheter) and it was getting worse and a very fast rate. No matter how much I screamed I just could not seem to wake my mother (seems to be getting harder) and I honestly thought that I was done for. Luckily enough I finally wet myself, which dropped my blood pressure and little and then after what seemed like an hour or so of yelling I was able to wake my mother to fix my catheter.

    The above situation got me thinking that surely there are quads out there who do live on their own, who don't have someone to scream to for help and if so what emergency systems do they have in place to manage a situation like that.

    Thanks in advance for any help and advice it will be greatly appreciated.
    Hi Linx. I have a call-bell system when I'm in bed. I can push it with my tongue. If I hold it for 3 seconds it makes a loud ding-dong sound wherever the receiver is, which is either where my caregivers sit, or once they leave they place it outside my mom's bedroom door. If I hold it for 5 seconds it dials an emergency line, if for whatever reason I can't wake my mom. It was set up by a local agency called Technology for Independent Living. Perhaps there is a local variation in your area that could set you up?
    Last edited by Scaper1; 12-19-2011 at 02:55 AM.

  3. #3
    Junior Member
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    Hi Scaper,

    Thanks for the quick reply and for explaining your setup. I'm off to search the web to look for something similar. Thanks again.

  4. #4
    i'm C-3,4 living with my parents, both are 65, i have a baby monitor outside my door, used to be inside my room but grandma had a stroke a year ago and she's in the room next to me downstairs while my parents are upstairs so the monitor works out for both of us, relatively cheap solution

  5. #5
    Baby monitors work well for within the home, or even in a next door apartment. A downside of these is that they leave you no privacy for things like talking on the phone without being heard in the room with the receiver, and of course someone has to be listening.

    Call bells can be as simple as a wireless doorbell, if you can push the button (mounted on your bed side rails, for example) to components of a sophisticated environmental control unit (ECU).

    ECUs are expensive, but can perform all sorts of functions from operating the bed (invaluable for getting the head of the bed up when you have AD) to operating the phone, TV, radio, etc. They even have modules for operating electric drapes and unlocking the front door to let someone in.

    Having a phone you can operate in either bed or your wheelchair is critical for anyone who will be alone and may have medical emergencies, or in case of a disaster or fire. There are a variety of options from regular phones to cell phone that can be operated with sip-and-puff to head switch or even voice control. You can find some good options by posting on our Equipment forum (we have had discussions there before, so search using the word "phone" to view these).

    I am going to move this to the Caregiving forum, which will provide you will additional resources.

    (KLD)

  6. #6
    We use a Radio Shack wireless intercom that just plugs in. It has both a call button and a voice activation, and you can set the volume wherever you want it. Ours are in Matt's room and in our bedroom. We can set the voice volume so that we can't hear his TV in our bedroom, but if he calls for us, we can hear that.
    _____________

  7. #7
    Senior Member anban's Avatar
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    I can access the tube with my hand and move it. I have the tube coiled beside me and the bag on a hook off the side of the bed, up close so I can reach it if it kinks. I lay on my back.

  8. #8
    Senior Member HR's Avatar
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    wireless doorbell

    Call bells can be as simple as a wireless doorbell, if you can push the button (mounted on your bed side rails, for example) to components of a sophisticated environmental control unit (ECU).
    (KLD)[/QUOTE]


    Hi Linx,
    KLD is right! You can go down to Home Depot and you can buy a wireless doorbell for
    9 or 10 bucks it's cheap and loud. I think it would work for you well thats my 2 cents.

  9. #9
    Junior Member
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    Hi everyone,

    Thank you so much for all the suggestions, they've been great. I actually can't believe why I didn't think of something as simple as a wireless door bell which I'm going to buy today.

    Thanks again for everything and I hope you all have a safe and merry Christmas, a wonderful New Year. Hopefully 2012 will prove to be a very positive year for a 'cure' and we will be enable to enrich our lives. I know I would give anything to be able to at least use my hands!

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