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chylve, I live in NC, Greensboro. My Mom is a C3-4-5 incomplete injured when she fell off a bed she stood on to turn on a ceiling fan about 13 years ago. She hit her neck on a dresser when she fell, was in a hospital in Boulder CO for about 3 months, then in a rehab that specialized in stroke treatment. She wasn't sent to Craig Hospital because of her age, which was 70 at the time, and because I wasn't as pushy as I am now. She had been visiting my sister when she was hurt, so my parents ended up living away from their home in CA for about 6 months. When they went back home to Petaluma, they had a ramp built to their mobile home, but no further modifications were made other than getting a mattress for their Sleep Number Bed that had an adjusting height mattress, and a topper that had undulating air pockets so she doesn't have to be turned at night. It works wonders for her. They don't have to turn her at night after her 10 o'clock settling. I know that your brother is 1500+ miles away. My Mom is 3000 miles and we make it work (I'm in NC, and my sister lives in Kansas now, and my other sister lives about 2 1/2 hours away in Ceres,CA. Long distance caregiving is a beast, most of what you are doing is research, sharing info, putting info out into the world and waiting for responses, trying to hook up answers until it all makes a package worth presenting or looks like it will solve a problem. It's a difficult task and creates feelings of inadequacy and defeat. BUT it's one of the most important tasks because it's a place where miracles happen - you get angels on the phone who give you way more info and support than you expect and you find answers you don't expect if you keep your eyes wide open and listen with your whole self. God will find a way to provide your needs, so when you ask about a slide board the next thing you know they are telling you about a person who can help your brother get a job and an assistive car six months from now that pays better than the one he had before, and they will build him a new home just for his needs. I promise a year from now things will seem much better than they are now. Just breathe. Again. Then move forward each moment. A year from now things will be better. Breathe, move, better.

Order the CRPF Paralysis Guide. It's free. You can download it to see it fast. But order the free copy in print so you can look at it and make notes. There's tons of info you'll need and can later share there. Then go to the forums where you can look up specific topics and learn answers and talk to people who will answer your concerns in pretty quick time. They all have some type of experience with what they talk about, some as medical people and others as caregivers or people with spinal or tbi injured.

Ask away, we're here to help you. zuzu
  • Posted Thu 25 Jun 2015 03:40 AM EDT
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