Many people think of "independence" not in terms of how well they can dress themselves, transfer into bed, or drive, but in terms of their ability to live alone in their own home. Many of these people use hired helpers, or assistants who come into the home, do what needs to be done, and then leave. Such helpers, rather than spelling dependence, are in fact a tool for the individual's independence.
Is this "life on the edge?" Many would say so. And it's true: many disabled people who live on their own are playing "beat the odds," hoping that nothing happens while they're alone. This brochure describes some of the issues people "living on the edge" might consider to lessen that "edginess" - to decrease the risks they face and to increase their own peace of mind.
Most of the strategies that make a difference fall into two broad categories: those that increase your ability to communicate with the outside world - quickly, easily, and at all times - and those that lessen the chances of the unforeseen happening.
Whether you're trapped on top of a mountain alone and in a blizzard with nothing but a cell phone, or alone in your home with a sophisticated call system, communication - more than anything else - is the key to both safety and survival. The bottom line: you need to be able to call for help from any place in your home, and in any situation. The best way to do this? Carry a "communicator" on your body at all times. Many people keep a cell phone clipped to their belts. (Note: On your chair, in your backpack, or on your lap will not be close enough if you happen to fall out of your chair!) If you can't find a cell phone that can be adapted so you can dial or at least activate a pre-set emergency number yourself, consider a subscription call system. Some people use a service that provides them with a simple receiver they wear around their neck. If they push the button, the service is notified automatically. The service then calls them back on the phone to check on them. If the wearer doesn't answer the phone, help is sent to the home. Some services will even call you if you fail to check in by a pre-arranged time each day. If you don't answer, they'll assume something has happened and send help.
There are many possible variations in the technology available in these systems. Some are quite sophisticated. For example, an emergency notification system might be established that places a sensor in a key place - your refrigerator door or under a carpet, for example. Then, if that refrigerator door doesn't get opened or that carpet doesn't get rolled over by the appointed time, help is again automatically notified.
For information on basic services like these in your area, start by checking out "Medical Alarms & Monitoring" in your yellow pages, or "Personal Emergency Response Systems" on the Internet. For the more creative, sophisticated solutions, you might try calling an occupational therapist at your local SCI rehabilitation center, a discharge planner at a local general hospital, a rehabilitation engineer, or again try the Internet.
Foreseeing the Unforeseen
There are several things, unique to spinal cord injury, for which you need to have an emergency plan in place:
Anticipate & Practice
This has been just a taste of some of the possible issues to consider. The key is anticipating. Unpleasant as it may seem, try to come up with various worst scenarios. Think things through; talk your issues and ideas over with family member, friends, or helpers, and make a plan for what you might do. Cover all the contingencies, get organized, line up any equipment you might need in an emergency, and, where it's practical, practice. Good luck!
What if none of this lessens your symptoms? Maybe your problems aren't coming from your bladder. Check your skin, see if there's pressure, pinching, or poking somewhere that you can't feel. Check your bowels. Can you do digital stimulation, just to see if there's a blockage that you might relieve?
Don't take chances - always wear a safety belt when you are alone. Make sure your helper has positioned the wheelchair's rear anti-tippers before he or she leaves you. And, make sure that phone or call device is attached to your person - not to the chair.
This brochure originally appeared in Paraplegia News (March 2001). It is reprinted here with the permission of PVA Publications. This article is part of a library of educational brochures developed by Craig Hospital with a federal grant titled, "Marketing Health Promotion, Wellness, and Risk Information for Spinal Cord Injury Survivors in the Community." The opinions expressed here are not necessarily those of the funding agency, the National Institute on Disability and Rehabilitation Research of the US Department of Education.
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