Here in San Antonio, I'm on a list for the SCI units to call when they have a new SCI patient getting ready to go home. I act as a mentor and provide the patient and family as much advice as requested. If it's not already in place, push for it, do it yourself. I tried creating a catch-all book, but it's difficult to encompass all ages and all levels of injury.
I encourage all of you here with 5 or more years experience, reach out to your local CIL, SCI units, rehabs. Be the mentor you wish you'd had upon going home. Aaron Mann On Wed, Oct 2, 2013 at 1:42 PM, Don Price <[email protected]> wrote: > GREAT suggestions ALL! > Thank you [and keep 'em coming]! > Don. > > ------------------------------ > *From:* Danny Hearn <[email protected]> > *To:* RONALD L PRACHT <[email protected]>; "[email protected]" < > [email protected]> > *Sent:* Wednesday, October 2, 2013 10:53 AM > > *Subject:* Re: [QUAD-L] Survival Manual Suggestions > > Wow, Ron- you summed it up pretty good ! when I got injured they had a > hospital class that taught us a lot of those things but I think it depends > what area or state you live as to what they know or teach you. I was like > you and had to go the 1st - 3 years with bed baths, then I had to get a > supra-pubic catheter and voc-rehab set me up with a contractor that helped > a bit with my bathroom remodel and overhead ceiling bed lift. (they paid a > small portion and I refinanced my home to pay the rest ) Our life got > soooooo much better after that ! thank god for any resourses that can help > in any ways or give suggestions. Dan H.*** > > *From:* RONALD L PRACHT <[email protected]> > *To:* "[email protected]" <[email protected]> > *Sent:* Tuesday, October 1, 2013 9:37 PM > *Subject:* Re: [QUAD-L] Survival Manual Suggestions > > The first thing any therapist or doctor has to address with a newly > injured person is the........but Im going to walk........syndrome. People > naturally are scared to do anything that may be inferring that they are > accepting the fact they may not walk again. The best way to deal with that > is to go around the issue. The main things people need to do right out of > the gate are > > Figure out if current living arrangement can accomadate a wheelchair, if > so start findind resources to build a ramp > Apply for social security > Widen doors at current house, bedroom and bathroom are a > must..........possibly drop hinges. > If possible start looking into installing a roll in shower.( I had five > years of hell without one) > Get all need handicap equipment ordered b4 leaving hospital > Learn about dysreflexia and how to prevent urinary tract infections, > pressure sores. > Make sure family is trained on help with catherizations, bowell routines, > transfers > Learn as much as you possibly can b4 you leave the hospital > > Once the person is out of rehab there will be a shock period to learn how > to live in the real world in a chair. The hospital setting is set up for a > paralyed individual, its scary at first going home which is normal. > > Start investigating going to school and getting a van to drive or ride in > > Ron > > *From:* Don Price <[email protected]> > *To:* "[email protected]" <[email protected]> > *Sent:* Tuesday, October 1, 2013 1:09 PM > *Subject:* [QUAD-L] Survival Manual Suggestions > > > Think back to right after your accident; you and your family were in the > hospital, clueless, trying to figure out what was going to happen and how > life was going to be from now on. It was a crazy, scary, emotional time for > everyone: you, your family and your friends. > > Imagine if someone were to hand you--or more likely your family--a > "Disability Survival Manual" that was intended to give you some advice from > people who had been there before. What would it include? > > My Center for Independent Living (CIL) is currently working on such a > manual. I'm tasked with writing an article on things that FAMILY and > FRIENDS should know. So, I'm reaching out to you, my friends on quadlist, > and asking for your input. > > What do you wish someone had told your family and friends right after your > injury? > > I APPRECIATE any input you may have. > > Don > Tempe, AZ > C5-6 32 years > > > > > > >
