Daily Archives: August 17, 2005
If someone yells “Fire!” people generally listen! They get ready to either (a) panic or (b) act quickly and decisively. One thing they don’t do is grab a brochure like this or a back issue of a magazine to review fire safety recommendations! That’s why right now is a perfect time to read this and think about what you could do, should the worst ever happen.
For everyone, but especially for people with disabilities who are living on their own, fire is on the short list of safety issues to worry about.
The world we live in – and we ourselves – place a very high value on physical independence. We’re raised on the expectation that we will ultimately take care of ourselves. As toddlers, we learn to dress and feed ourselves, as teens we learn to drive and to think for ourselves and finally, as adults, we assume responsibility for our lives. Hallelujah, we’ve finally grown up.
You’ve lived with someone who is spinal cord injured for some time. Perhaps you’re feeling more tired, more blue, more isolated than you want to. You may find yourself with different priorities than your partner, especially where things like work, children, education or creative expression are concerned. The problem? You’re not disabled, your partner, son or daughter is. Research is showing that wives, husbands, significant others those who provide care are at risk of developing significant problems of their own. If you provide care for your loved one – or if you receive care from one read on …
For Better and For Worse
No one plans on spinal cord injury. “No one” includes you–the spouse, the family, the person who provides care–as well as the survivor. Yet you’ve been there, all this time. And by now you know that there’s not much out there in the way of support for spouses, friends and family. You say you feel neglected?
How to Find, Hire & Keep Them
You’ve wrestled with the issue of attendant care, and decided that it’s finally time to get some help. Or perhaps a present caregiver is getting older, and needs some relief. Maybe you’re just feeling older yourself. You’re in good company: over forty percent of all people with spinal cord injury (SCI) use some form of assistance, and the percentage increases with age. For first-time personal care attendant (PCA) employers, here are some tips for maintaining freedom, flexibility and control, and saving money to boot.
There are lots of reasons why people with disabilities decide to get more help. Some don’t have a choice – because of the extent of their disabilities, because of their family situations, or because of other health issues. Some don’t have time to do all of their personal care, homemaking, and other tasks themselves. And some just plain don’t want to do these things themselves! However, regardless of the reason for getting help, most people prefer to have the entire caregiving and care receiving process be as short and un-disruptive as possible.
One good way to minimize disruption and to keep caregivers from becoming the focus of your life is to get organized.
It’s no surprise that many people with spinal cord injuries have aches and pains. Often, that aching and paining targets the joints. And, with arms needing to do their own job, as well as having to serve as “surrogate legs” – transferring, using wheelchairs, maybe even pedaling handcycles – no one will be shocked to hear that the most achy joint of all is the shoulder.
What do all of the following have in common?
- increased muscle Spasticity
- heart, liver, kidney, & brain damage
- pressure sores
- urinary tract infections
Most spinal cord injury survivors who are used to driving a car aren’t too excited about switching to a modified van. “They’re too big. They’re too expensive. They’re not very sporty or fun. They’re too hard to drive.” Sound like you? If so, you may have even more reasons not to switch. Yet, increasing hassles, pain and fatigue may be telling you otherwise.
“I’m Not Ready…”
Breathing seems pretty basic. Inhale. Exhale. Repeat. When you stop … well … you have a problem.
Obviously, if you can’t breathe, you’ve got problems. For some spinal cord injury survivors, that’s just a part of the injury. For others – those to whom this article is addressed – it could become or is becoming a problem. The issues boil down to four major categories: