Learning to live well

Topic: Adjusting to the "New you", Learning to live well with brain injury

October, 2011

Ellen Connell is a Registered Clinical Counselor in private practice. She has been providing individual, group and family counseling services to individuals affected by brain injury (and other catastrophic injuries) for over 25 years.

Ellen received her B.A. in psychology and her M.A. in Counseling Psychology from U.B.C. Her thesis examined how direct and indirect survivors made sense of the experience of brain injury and living with brain injury She is the co – developer of a curriculum based mutual aid model for facilitating psychological growth and emotional wellness following a catastrophic injury.

A passionate advocate for survivors and their families Ellen trains both as co – facilitators for her Together Towards Wellness Groups. Together with survivors and caregivers Ellen has presented at several major brain injury conferences on the topics of psychological growth, emotional wellness, dealing with depression and developing resiliency. She has also consulted with public sector agencies (Veteran’s Affairs and The Office of the Public Trustee, Volunteer Nanaimo) regarding how to better serve their clients with brain injury and other catastrophic injuries. Ellen is currently pursuing certification as a neurofeedback practitioner and is excited to add this treatment modality to the services she is able to offer her clients.

In her leisure time Ellen enjoys spending time with family and friends, Bikram yoga, walking, cycling, cooking and knitting. 

Submit your question below or email it to info@brainstreams.ca

Question: I was involved in a Motor Vehicle Accident while at work. I was struck from behind by a 5 ton flatbed truck at a red light. It's been 16 months of frustration, anger, depression and I wonder when my symptoms will end. I've attended the concussion clinic in Vancouver to manage the symptoms however no solution to my ongoing problems. I've attempted to return to work but the symptoms continue to be debilitationg for me. Please help me find an answer to what is happening to me. - Giordan

Ellen's response:

Hello Giordan, I hear your frustration and your discouragement and I hope I may be able to offer you some reassurance and some hope.

The symptoms you are describing are certainly consistent with those affecting persons who have sustained a mild traumatic brain injury (MTBI) also known as a concussion. The  adjective “mild” is strictly a diagnostic term and does not accurately reflect the impact the outcome of this type of injury may have on many aspects of the lives of people who sustain them. Frequently these types of injuries do not show up on CT scans or MRI’s but this does not mean that they are not real, it just means that the tests are not sensitive enough to detect them. You have described changes in your physical function, your cognitive function and your emotional function and all the changes you describe are common outcomes of MTBI. You are experiencing disruption in all aspects of your life so it is little wonder that you are feeling depressed, frustrated and discouraged. It is very important for you to know that things will get better and you are not alone.

I hope that you are working with a good rehabilitation team to assist in your healing. This team would ideally  be comprised of a physiotherapist (both an orthopaedic physio as well as a vestibular physio), an Occupational Therapist( to assist with ergonomics, accommodations and to oversee any attempt at a return to work), a counsellor and possibly a lifeskills or community support worker. In the ideal world you would be seeing these team members on a regular (i.e. weekly ) basis to address physical, cognitive and emotional symptoms and hopefully reduce them. Some symptoms will decrease over time until they are no longer a problem, others you may need to learn to work around or accommodate as they may be more persistent. Even if some of your symptoms do persist you can live a satisfying and meaningful life by learning to manage your energy and your symptoms. This is what I call living well with brain injury.  As you probably already know rest is an important element to living well with brain injury. When you think about it it makes sense because the only time your brain gets to rest is when you do. For a person who is used to being very physically active like you this is sometimes the most challenging aspect of learning to live well with brain injury. Developing patience and gentleness with yourself will really help you in this area, hopefully your counsellor(and other team members) can help you with this You may not have a choice about how much energy you have in any given day, but you do get to decide how you want to spend it. Learning to pace yourself and  to limit the amount of stimuli you are trying to deal with can help you function more effectively. I understand that having young children in the home can make limiting stimuli challenging but your team can help you find ways to do this that will work in your family.

Accessing peer support, both for you and your family, is a very important part of learning to live well with brain injury. It is important that you connect with other people who can relate to the experiences you are having because they have been there too. I would strongly encourage you to check out your local brain injury society. Resources like Brainstreams.ca are also wonderful ways to connect with others who have had similar injuries and are also striving to move beyond the trauma of the injury to a place of wellness. Finally it is important to remember that learning to live well with any kind of chronic injury or any kind of disability is a process, not an event. As you have been learning it takes time to heal from this type of injury. As you have described trying to push yourself harder is not necessarily effective, in fact it can cause an increase in symptoms. So try to remember to breathe... (long ,slow, steady, easy, breaths) and take care of yourself on the journey of healing. Remember to focus on those things in your life that do bring a smile to your face and a joy to your heart (the laughter of your children, your wife’s smile) as these are some of the things that will sustain you on the journey. Start an “I am” list where you can write down and honour aspects of who you are now(as opposed to focusing soley on those aspects of your pre injury self that feel lost to you now.) Try to have at least one good laugh every day and try to be as patient with yourself as you would be with one of your children as you adjust to changes in your abilities and limitations. You  can learn to live well with your injury and your current and emerging abilities and limitations. It will not be easy, but it will be worth it.

Question: My husband has depression. For about 25 years he worked as neon signs maker (glass blower). When he came home he look out of his mind, he was tire and nothing will register in his mind. Over the last 2-3 years I notice his short term memory is getting worst. nothing registers in his brain. My husband stopped working two years ago, went back to school took an apprenticeship as electrician. He didn’t past the course. My husband spend 5-6 hrs. studied at night, and weekends all day long studied for exams or reviewing lessons and the next day nothing registered. It is getting so bad that he has lost  jobs because he can not remember what he is been told to do, or how to do it. Co-workers,employer and wife (me) are frustrated because he “doesn't paid attention”. My question is any studies on this? What can we do to help him?. Where do we go? - Mary

Ellen's response:

Hi Mary, it sounds like you and your husband have been having a very challenging time over the past 3 years. I am really glad that you are reaching out for help and support and hope I am able to be of assistance

To answer your first question I am not aware of any studies on the effects of chronic exposure to neon gas on the brain. This does not mean that no studies exist, just that I am not familiar with them. As to what you can do to help your husband I think a good place to start is with your family doctor. If I understand you correctly your husband has depression and memory and attention problems that started 3 years ago and have gotten steadily worse.

The family doctor can do a thorough physical workup as well as refer your husband to any specialists who may be able to properly diagnose the source(s) of his symptoms and suggest treatment for his symptoms.

Untreated, depression can cause cognitive (thinking skill) problems like problems with attention and memory, so getting a clear picture of your husband’s overall health is important. In addition you and your husband will benefit from learning to use strategies to help compensate for his difficulties with memory and attention. Some examples are following a daily routine comprised of a variety of tasks/activities. This will allow your husband to be productive without having to “remember” what he is supposed to be doing. If he is able to work safely he may function best in a job that is fairly repetitive in nature. Using a white board to write down his schedule(at home or at work) can also be helpful. Using lists, written reminders, timers etc. can also be helpful depending on the type of task and what you and your husband are most comfortable with.

If you and your husband use a computer or smart phone there are many applications that can be helpful in recording information and cuing someone to perform tasks at a particular time. I am not sure where you live but there may be Occupational Therapists or rehabilitation counsellors in your community who can assist you in this regard. I would also recommend that you and your husband access counselling to help you process the significant changes you have been experiencing as well as the impact this has no doubt had on your roles and your relationship. If there is a brain injury society in your area they may have a list of professionals who are experienced in working with individuals and families dealing with cognitive deficits.

It is important that both you and your husband have the opportunity and support to grieve the losses associated with the changes in his abilities and limitations. Only by grieving your losses are you able to move beyond the trauma of change , embrace your new reality and learn to live well with what you have now.

As you know Maria this is not an easy process, but it is possible. I hope these suggestions are helpful and that you and your husband are able to access the resources you need to learn to live well with your husbands changed abilities. 

Question: Hi, I sustained a closed head injury in the early 1980s and have adjusted fairly well. I have enrolled in some university courses, and I am having a problem processing information; I understand what I read and can retain it, but when it comes to putting it down on paper I become very frustrated and can’t seem to pull it together. I end up making pages and pages of notes, becoming more and more frustrated and never really getting anywhere. Is there away to cope?  Daniel

Ellen's response:

Hi Daniel, Yes! There are ways to cope. I am so glad you have asked this question and hope that the suggestions I make may help. It is great to hear that you have been able to adjust to the effects of living well with brain injury, this is such a good start.

The experience you describe of trying to learn new information with a brain injury is not uncommon, that said it is still very frustrating. I am not sure where you are studying but I wonder if you have connected with the Resource Centre for Students with Disabilities at your Educational Institution, this is a good start. There are services and funding available to students with any disability (yes even an invisible one). You are eligible for accommodations (longer times to write exams, quiet rooms) and may be eligible for funding for equipment (i.e. computers, light scribes) and services (tutors, learning facilitators)which will support your learning.

Learning facilitators are different from tutors in that they support people in knowing what they need to do to learn (how to organize, prioritize, process and retain) this type of service is often very helpful for  students who have sustained a brain injury.