What would I recommend? 1. Listen to what the rehab people had to say. In my case it was "you control your disability, don't let it control you". I took that literally.
2. As others have said, education, education. Take advantage of any educational opportunities your state offers. 3. Get a job if possible. In my case I was lucky, we already had an established group home for mentally retarded individuals. We were able to change some things and maintain the home. 19 years later I'm still doing the same thing, and it has been a challenge but I now offer several different classes for people who wish to become group home operators. 4. Attendant care-probably one of the most difficult problems we face. Nevada has an outstanding personal care attendants program, with the legislation written and pushed through the legislature by a C5/6 quad 20 years ago. Through a grant program the state allows nonmedical personnel to do bladder, bowel, and wound care after being signed off by an RN. There have been various agencies who have directed this program over the years, some better than others. I helped to start a client support group so that people who were needing personal care attendants had some guidelines to help them navigate the difficulties of working with personal care attendants and what their responsibilities to the personal care attendants were, as well as what the responsibilities of the PCA were to the clients. 5. Develop and maintain a support group for yourself. For us lucky enough to have family's involved nurture and maintain those relationships, and nurture and maintain the relationships we have outside the family's. I have tried very hard to maintain the relationships that I had with former PCA's so that they are still available to me in case of an emergency. I have been successful with five or six four PCA's, and this is a great help when my usual PCA's not available. 6. Learn to listen to your body. If you know something is wrong, don't allow your doctor to tell you otherwise. Find a Dr. That will listen to you and believe that you know what you're talking about. Educate yourself about your own Health Care needs, and don't let other professionals talk you into a course of treatment that you know from experience won't work. This list is a great place to find ideas to follow up on and discuss with your Dr.-The collective years of experience here are a great starting point in solving problems that you might be having. 7. Keep busy, and if you do not have anything at home to keep you busy go find something to do. Take educational courses online, go volunteer at the hospital, go volunteer at a school, check with your local senior citizen center and see if there is somebody who needs help (for a few years I spent some time with a couple of people who had no family and just needed somebody to talk with-during the bad winter months I talked with them on the telephone, and during the summer months I would go visit even though I usually had visit outside because I could not get into their house), form a spinal cord injury group in your town, or volunteer at your local library. 8. Don't pity yourself, look around there's always somebody much worse off than you are. Each time I get down in the dump's because I couldn't take part in some activity or get together I'd look for somebody who needs more help than I do and realize that I have it pretty good. J 9. Patience, patience, patience,-it never gets easier to wait for somebody to have time to help you, but try hard to develop Patience. 10. A sense of humor. Laugh at yourself, laughter is the best medicine. Enjoy every minute that you can and store them up for the bad times, and may the good times out weigh the bad times. 11. Happy new year everybody, and yes I do resolutions, and no for the most part I don't follow them up. Joan in snowy Reno
