Re: [QUAD-L] Survival Manual Suggestions
Congratulations Aaron with your find work which newly injured spinal cord injury patients. Dana In a message dated 10/8/2013 9:08:23 P.M. Central Daylight Time, aman...@gmail.com writes: 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 <_donprice63@yahoo.com_ (mailto:donpric...@yahoo.com) > wrote: GREAT suggestions ALL! Thank you [and keep 'em coming]! Don. From: Danny Hearn <_ddh247@sbcglobal.net_ (mailto:ddh...@sbcglobal.net) > To: RONALD L PRACHT <_r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) >; "_quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) " <_quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) > 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 soo much better after that ! thank god for any resourses that can help in any ways or give suggestions. Dan H.*** From: RONALD L PRACHT <_r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) > To: "_quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) " <_quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) > 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 thebut Im going to walksyndrome. 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 <_donprice63@yahoo.com_ (mailto:donpric...@yahoo.com) > To: "_quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) " <_quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) > 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
Re: [QUAD-L] Survival Manual Suggestions
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 wrote: > GREAT suggestions ALL! > Thank you [and keep 'em coming]! > Don. > > -- > *From:* Danny Hearn > *To:* RONALD L PRACHT ; "quad-list@eskimo.com" < > quad-list@eskimo.com> > *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 > soo much better after that ! thank god for any resourses that can help > in any ways or give suggestions. Dan H.*** > >*From:* RONALD L PRACHT > *To:* "quad-list@eskimo.com" > *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 thebut Im going to walksyndrome. 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 > *To:* "quad-list@eskimo.com" > *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 > > > > > > >
Re: [QUAD-L] Survival Manual Suggestions
GREAT suggestions ALL! Thank you [and keep 'em coming]! Don. From: Danny Hearn To: RONALD L PRACHT ; "quad-list@eskimo.com" 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 soo much better after that ! thank god for any resourses that can help in any ways or give suggestions. Dan H.*** From: RONALD L PRACHT To: "quad-list@eskimo.com" 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 thebut Im going to walksyndrome. 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 To: "quad-list@eskimo.com" 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
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 soo much better after that ! thank god for any resourses that can help in any ways or give suggestions. Dan H.*** From: RONALD L PRACHT To: "quad-list@eskimo.com" 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 thebut Im going to walksyndrome. 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 To: "quad-list@eskimo.com" 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
RE: [QUAD-L] Survival Manual Suggestions
Those are all great suggestions, mine was especially difficult because of being treated in California and living in Nevada but luckily we had already accommodated my mother with her wheelchair and I had been a mental retardation technician for 18 years so we were pretty up to date on Medical Equipment but my house was four levels which made things fun. We finally got a swing arm motor home lift which took me from one level to another and then built ramps for the other two levels.- Outside ramps which made things great fun in our Reno snowy winters. J Keep up the good ideas Joan From: RONALD L PRACHT [mailto:r.pra...@sbcglobal.net] Sent: Tuesday, October 01, 2013 7:38 PM To: quad-list@eskimo.com Subject: Re: [QUAD-L] Survival Manual Suggestions The first thing any therapist or doctor has to address with a newly injured person is thebut Im going to walksyndrome. 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 To: "quad-list@eskimo.com" 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
Re: [QUAD-L] Survival Manual Suggestions
The first thing any therapist or doctor has to address with a newly injured person is thebut Im going to walksyndrome. 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 To: "quad-list@eskimo.com" 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
Re: [QUAD-L] Survival Manual Suggestions
Hi Don. I know the Nat Spinal Cord Injury Assoc has produced a Survival Guide for spinal cord injuries. I also believe the 5-6 Major Rehab Units Shepherd, Kessler, RIC, Craig and a few others have a Survival Manual written by their OT Depts. I've learned over the decades that no two injuries are the same. Some are injuries before birth and many are after birth injuries that are permanent. So in compiling anything, please consider everyone (as much as possible) Best Wishes In a message dated 10/1/2013 1:09:59 P.M. Central Daylight Time, donpric...@yahoo.com writes: 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
[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
