Each year, an estimated 2.4 million people in the United States sustain a traumatic brain injury (TBI), and another 795,000 people are diagnosed with an acquired brain injury (ABI) from non-traumatic causes, such as stroke.
Brain injury can have significant, long-term effects.
In fact, more than 5.3 million Americans are living with a lifelong disability because of TBI, and an estimated 1.1 million have a disability related to stroke.
With this large of an impact, many caregivers are seeking help from online educational resources.
To meet the needs of its brain and spinal cord injury rehabilitation patients and their families, Shepherd Center created an educational website found at MyShepherdConnection.org.
An in-depth section is devoted to brain injury-related topics, such as mood, behavior, memory, safety, nutrition, medication management and family dynamics. Instructional videos and other educational materials are also available on the website.
A number of other online resources also provide valuable information.
Here to discuss My Shepherd Connection and other resources is Susan Johnson, director of brain injury services at Shepherd Center.
Selected Podcast
Educational Resources to Help People with Brain Injury
Featured Speaker:
Susan Johnson, MA
Susan Johnson, MA, CCC-SLP, CCM, is the director of brain injury services at Shepherd Center, a position she has held since 1998. She directs a full continuum of brain injury services, including acute care, inpatient rehabilitation and post-acute care that encompasses outpatient services, day program services, residential services, and a mild traumatic brain injury and PTSD program for military service personnel injured in post-9/11 conflicts. Johnson is a speech-language pathologist and a certified case manager. She has spoken at numerous national and regional workshops on brain injury and has received numerous awards for advocating for people with brain injury. Transcription:
Educational Resources to Help People with Brain Injury
Melanie Cole (Host): Each year an estimated 2.4 million people in the United States sustain a traumatic brain injury and another 795,000 people are diagnosed with an acquired brain injury from a non-traumatic cause such as stroke. Brain injury can have significant long term affects. In fact, more than 5.3 million Americans are living with a life-long disability because of traumatic brain injury. An estimated 1.1 million have a disability related to stroke. With this large of an impact, many caregivers are seeking help from on-line educational resources. My guest today is Susan Johnson. She is the Director of Brain Injury Services at Shepherd Center. Welcome to the show, Susan. Tell us about the need for more educational resources for people that have suffered brain injury. What are they looking for?
Susan Johnson (Guest): What we find is that because of the number of people who are injured every day--and you heard the numbers yearly – that a good many of these individuals don’t even get to rehabilitation. So many of them either are discharged to a skilled nursing facility and/or are going home without any resources or understanding how to manage these young people and, quite frankly, older folks who have experienced a traumatic brain injury and/or stroke. What we have designed here at Shepherd Center is a resource for families who are going home and/or didn’t get rehabilitation to offer educational resources on how to care and manage these individuals. The resource that we have is called
“My Shepherd Connection”. If you go on www.MyShepherdConnection.org and pull that up, you will see five different categories of information where you can actually click on where it says “brain injury”, “disorders of consciousness”, “strokes”, “spinal cord injury” and “multiple sclerosis”. We’re going to focus today on brain injury, disorders of consciousness and strokes. By clicking on those tabs, you will get a long list of information on what a brain injury is, how it happens, some of the neuropathology related to it, what you can expect for potential recovery, what parts of the brain are affected, and how your loved one is affected as a result of the injury. In the brain injury section, we actually even have a tab on the mild traumatic brain injury that many of you have heard our returning veterans coming back for--specific to mild TBI, PTSD. There is some very specific information on mild traumatic brain injury for, not only the veterans, but also those folks who have experienced a concussion in sports or a fall. There is some really good information and resources in that category. What it includes is information on mood, behavior – which can create issues as people get better – thinking and memory. It gives folks activities and things that they can do to help full recovery and neuro recovery. It talks about prevention which is a critical piece because, certainly, having a stroke and/or a brain injury, you’re at high risk to have another one. It talks about communication and long-term issues, like substance abuse, as a result of the brain injury. Sometimes folks become a little bit more impulsive and disinhibited and, therefore, begin to drink and do drugs. We have some prevention issues that I think are real critical and, quite frankly, sometimes as a result of their injury are results of substance abuse prior to that. For people who have had brain injury who still need more longer-term care, it talks about how to manage your bladder and do bladder training and bowel training. It talks about transfers and family dynamics. As we know, after a catastrophic injury these particular folks do have family dynamics that can play into the recovery. Interestingly enough, the literature even supports that certainly having the support of a family helps with the ongoing recovery of a person with a brain injury. We know with catastrophic injury that sometimes families can get a little frustrated about how to manage and who’s in charge and that kind of thing. We do have a nice section on explaining some of those issues.
Melanie: Susan, I feel that it is so comprehensive and that if people go to MyShepherdConnection.org, there is so much information, as you say, just even in the brain injury section. But disorders of consciousness, strokes, spinal cord injury, and multiple sclerosis – it’s so comprehensive. Tell us a little bit about some of the resources such as e-books or i-books that are available from Shepherd for caregivers, for example, or ways that they can kind of take it with them and read your pamphlets.
Susan: That’s a good point. Once you’re on that section, we also have a small section with a woman holding hands and you’ll see some links specific to a video that is done on brain injury and/or spinal cord injury. It is an excellent resource for newly injured people to really understand the recovery process. It’s a wonderful video. As a matter of fact, Judy Forton, the former CNN anchor, is a person who actually guides you through that process but also Lee Woodruff who, in the brain injury section, talks about some of the family issues. Lee was the husband of the NBC Anchor who was in Iraq who experienced a traumatic brain injury and his recovery process. It’s really interesting to see some of the dynamics with that. We also have e-books that are specific to caregiver guides, emergency prep cards that you can actually download and get this information and have it with you or give it to other people that you might know that have had this kind of injury.
Melanie: I think that is a wonderful service because you can download them and, as you say, keep them with you. For caregivers, even putting your emergency situation and information on the refrigerator. What do you tell the families, Susan? You mentioned mood. You mentioned certain behaviors and that sort of thing. What do you tell the family when they ask you about these kinds of things and what they should be doing and how they can trust the information that they read all over the internet?
Susan: That’s a very good question. I do get quite a few of those calls. The initial calls I usually get are from families who start out in disorders of consciousness. These folks are people who are still in a coma, or maybe in a vegetative state or even in a minimally conscious state where their loved one is taking a little longer to come out of that coma-like state. I spend a lot of time talking to families about how to manage that, what things to look for specifically that show on-going recovery. I talk a lot about prognosis with a lot of these families and then, what some of those expectations are for the future. I think the biggest one we spend a lot of time in is that folks with brain injuries do get better, it’s just how long and when. Once they emerge and I start talking with families about the long-term affects as we are nationally trying to change with Congress that brain injury is more of a chronic issue because there are long-term affects after brain injury versus an episode. From there, we know that as people recover and their brains are rewiring that certain behaviors start happening and because they become more aware of their challenges, then they can have more – potentially--behavior issues that people don’t understand. Quite frankly, they just don’t have a filter anymore, but that is part of their brain injury. That really does alienate and sometimes offend our society because it’s not the norm of what we expect. We talk a little bit about that and how to manage it, get hooked up with physicians who understand it to help with maybe with some medication management. These folks make ongoing recovery for years and years but may need tune-ups to help support their abilities to integrate back into their community.
Melanie: In just the last minutes, Susan, and how beautifully put – what a wonderful service that you provide to the community at large and for Shepherd Center – give your best advice about educational resources, believing what you read on the internet. Why they should come to Shepherd Center for their care?
Susan: There is a lot of misinformation on the internet. We have such a valuable resource now that we can actually look things up. It is very important that you do find information that is reputable. Most of the resources that are available which we have which are factual and evidenced-based is through MyShepherdConnection.org. Definitely use that. I think that the Mayo Clinic also has reputable information. Certainly, if you are ever questioning whether it is, you can call Shepherd Center at any time at our admissions department as well as myself would be more than happy to talk you through the process and help guide you in the resources that are needed. Nationally, we have a lot of resources available. If you’re not comfortable with that, there is a lot of good information nationally through the Brain Injury Association of America. They have a wealth of information as well that guide people into finding those reputable programs and support services that help with that. In addition, each state has a lot of resources as well through the Brain Injury Association of America. You can look up those two. It is very critical to find the right information to get you hooked up in meeting the needs of your loved one.
Melanie: Thank you so much, Susan, for being with us today. You’re listening to Shepherd Center Radio. For more information on educational resources at Shepherd Center, you can go to Shepherd.org. That’s Shepherd.org. This is Melanie Cole. Thanks so much for listening.
Educational Resources to Help People with Brain Injury
Melanie Cole (Host): Each year an estimated 2.4 million people in the United States sustain a traumatic brain injury and another 795,000 people are diagnosed with an acquired brain injury from a non-traumatic cause such as stroke. Brain injury can have significant long term affects. In fact, more than 5.3 million Americans are living with a life-long disability because of traumatic brain injury. An estimated 1.1 million have a disability related to stroke. With this large of an impact, many caregivers are seeking help from on-line educational resources. My guest today is Susan Johnson. She is the Director of Brain Injury Services at Shepherd Center. Welcome to the show, Susan. Tell us about the need for more educational resources for people that have suffered brain injury. What are they looking for?
Susan Johnson (Guest): What we find is that because of the number of people who are injured every day--and you heard the numbers yearly – that a good many of these individuals don’t even get to rehabilitation. So many of them either are discharged to a skilled nursing facility and/or are going home without any resources or understanding how to manage these young people and, quite frankly, older folks who have experienced a traumatic brain injury and/or stroke. What we have designed here at Shepherd Center is a resource for families who are going home and/or didn’t get rehabilitation to offer educational resources on how to care and manage these individuals. The resource that we have is called
“My Shepherd Connection”. If you go on www.MyShepherdConnection.org and pull that up, you will see five different categories of information where you can actually click on where it says “brain injury”, “disorders of consciousness”, “strokes”, “spinal cord injury” and “multiple sclerosis”. We’re going to focus today on brain injury, disorders of consciousness and strokes. By clicking on those tabs, you will get a long list of information on what a brain injury is, how it happens, some of the neuropathology related to it, what you can expect for potential recovery, what parts of the brain are affected, and how your loved one is affected as a result of the injury. In the brain injury section, we actually even have a tab on the mild traumatic brain injury that many of you have heard our returning veterans coming back for--specific to mild TBI, PTSD. There is some very specific information on mild traumatic brain injury for, not only the veterans, but also those folks who have experienced a concussion in sports or a fall. There is some really good information and resources in that category. What it includes is information on mood, behavior – which can create issues as people get better – thinking and memory. It gives folks activities and things that they can do to help full recovery and neuro recovery. It talks about prevention which is a critical piece because, certainly, having a stroke and/or a brain injury, you’re at high risk to have another one. It talks about communication and long-term issues, like substance abuse, as a result of the brain injury. Sometimes folks become a little bit more impulsive and disinhibited and, therefore, begin to drink and do drugs. We have some prevention issues that I think are real critical and, quite frankly, sometimes as a result of their injury are results of substance abuse prior to that. For people who have had brain injury who still need more longer-term care, it talks about how to manage your bladder and do bladder training and bowel training. It talks about transfers and family dynamics. As we know, after a catastrophic injury these particular folks do have family dynamics that can play into the recovery. Interestingly enough, the literature even supports that certainly having the support of a family helps with the ongoing recovery of a person with a brain injury. We know with catastrophic injury that sometimes families can get a little frustrated about how to manage and who’s in charge and that kind of thing. We do have a nice section on explaining some of those issues.
Melanie: Susan, I feel that it is so comprehensive and that if people go to MyShepherdConnection.org, there is so much information, as you say, just even in the brain injury section. But disorders of consciousness, strokes, spinal cord injury, and multiple sclerosis – it’s so comprehensive. Tell us a little bit about some of the resources such as e-books or i-books that are available from Shepherd for caregivers, for example, or ways that they can kind of take it with them and read your pamphlets.
Susan: That’s a good point. Once you’re on that section, we also have a small section with a woman holding hands and you’ll see some links specific to a video that is done on brain injury and/or spinal cord injury. It is an excellent resource for newly injured people to really understand the recovery process. It’s a wonderful video. As a matter of fact, Judy Forton, the former CNN anchor, is a person who actually guides you through that process but also Lee Woodruff who, in the brain injury section, talks about some of the family issues. Lee was the husband of the NBC Anchor who was in Iraq who experienced a traumatic brain injury and his recovery process. It’s really interesting to see some of the dynamics with that. We also have e-books that are specific to caregiver guides, emergency prep cards that you can actually download and get this information and have it with you or give it to other people that you might know that have had this kind of injury.
Melanie: I think that is a wonderful service because you can download them and, as you say, keep them with you. For caregivers, even putting your emergency situation and information on the refrigerator. What do you tell the families, Susan? You mentioned mood. You mentioned certain behaviors and that sort of thing. What do you tell the family when they ask you about these kinds of things and what they should be doing and how they can trust the information that they read all over the internet?
Susan: That’s a very good question. I do get quite a few of those calls. The initial calls I usually get are from families who start out in disorders of consciousness. These folks are people who are still in a coma, or maybe in a vegetative state or even in a minimally conscious state where their loved one is taking a little longer to come out of that coma-like state. I spend a lot of time talking to families about how to manage that, what things to look for specifically that show on-going recovery. I talk a lot about prognosis with a lot of these families and then, what some of those expectations are for the future. I think the biggest one we spend a lot of time in is that folks with brain injuries do get better, it’s just how long and when. Once they emerge and I start talking with families about the long-term affects as we are nationally trying to change with Congress that brain injury is more of a chronic issue because there are long-term affects after brain injury versus an episode. From there, we know that as people recover and their brains are rewiring that certain behaviors start happening and because they become more aware of their challenges, then they can have more – potentially--behavior issues that people don’t understand. Quite frankly, they just don’t have a filter anymore, but that is part of their brain injury. That really does alienate and sometimes offend our society because it’s not the norm of what we expect. We talk a little bit about that and how to manage it, get hooked up with physicians who understand it to help with maybe with some medication management. These folks make ongoing recovery for years and years but may need tune-ups to help support their abilities to integrate back into their community.
Melanie: In just the last minutes, Susan, and how beautifully put – what a wonderful service that you provide to the community at large and for Shepherd Center – give your best advice about educational resources, believing what you read on the internet. Why they should come to Shepherd Center for their care?
Susan: There is a lot of misinformation on the internet. We have such a valuable resource now that we can actually look things up. It is very important that you do find information that is reputable. Most of the resources that are available which we have which are factual and evidenced-based is through MyShepherdConnection.org. Definitely use that. I think that the Mayo Clinic also has reputable information. Certainly, if you are ever questioning whether it is, you can call Shepherd Center at any time at our admissions department as well as myself would be more than happy to talk you through the process and help guide you in the resources that are needed. Nationally, we have a lot of resources available. If you’re not comfortable with that, there is a lot of good information nationally through the Brain Injury Association of America. They have a wealth of information as well that guide people into finding those reputable programs and support services that help with that. In addition, each state has a lot of resources as well through the Brain Injury Association of America. You can look up those two. It is very critical to find the right information to get you hooked up in meeting the needs of your loved one.
Melanie: Thank you so much, Susan, for being with us today. You’re listening to Shepherd Center Radio. For more information on educational resources at Shepherd Center, you can go to Shepherd.org. That’s Shepherd.org. This is Melanie Cole. Thanks so much for listening.