Co-founder of The Brain Injury Hope Foundation Mary Ann Keatley explains the Energy Pie during the October 2020 Survivor Series via Zoom.
By Eliza Marie Somers
We’ve all experienced exhaustion: When we are so tried after a long day we just […]
Joanne Cohen, vice president of the Brain Injury Hope Foundation, says caregivers also face grief. For more information on grief and brain injuries, please see our two blogs on the subject. Gaining Your Power Back with Counseling after Brain Injury and
The Brain Injury Hope Foundation recommends that you please consult your physician for all medical advice. And please remember, the statements in this blog post are not intended to diagnose, treat, cure or prevent any disease. Brain Injury Hope Foundation, its representatives and officers have not verified and do not condone any opinions or recommendations contained herein […]
BIHF Vice President Joanne Cohen, top left, Rita Coalson, MA, LPC NCC, and BIHF President Gayann Brandenburg, bottom, facilitate the Benefits of Counseling Following a Traumatic or Acquired Brain Injury on July 17, 2020.
Counseling may be the furthest thing from someone’s mind during recovery from a mild traumatic brain injury (mTBI), but it might just be the best thing a survivor can do for their well-being.
During the second virtual installment of the Brain Injury Hope Foundation’s Survivor Series of 2020, Benefits of Counseling Following a Traumatic or Acquired Brain Injury on July 17 via Zoom, Rita Coalson, MA, LPC NCC, and Joanne Cohen, vice president of the BIHF, discussed ways in which a counselor can help survivors, along with some useful tips
“A TBI is a chronic illness, and counseling can help you with what you are going through,” Coalson said. “We can put a label on it, give it some verbiage. That can help you as you recover. Counseling can also help educate the people around you and explain to them what you are going through.”
Counseling is about gaining your power back, and giving a survivor a sense of control over their environment can go a long way in helping with recovery.
“Counseling can help empower you,” Coalson explained. “A brain injury comes with trauma, but if we can empower you it can help you figure out a way to move forward. By asking ‘Am I OK with who I am? Where do I want to go from here? What is my new normal?’ People want to get their original lives back. We can help you find a silver lining.”
But what could be a silver lining of having a brain injury you might ask?
“Being more compassionate to yourself,” Coalson said. “You have grief because you are dealing with the death of who you were. And your family and friends are grieving, too. … It’s OK to change, and come up with what you CAN do. And acceptance of that can be a long journey.”
So take time to recognize and honor the grief you are suffering by finding space and time to take care of you.
The coronavirus pandemic adds another layer of grief and discomfort to the recovery process, and Coalson suggested some things a survivor can do as we all navigate this new normal.
In some ways, BI survivors are already dealing with some of the results of the Covid-19 crisis – isolation, loneliness and seclusion being the big challenges.
“Isolation comes with brain injuries,” Coalson said. “There may be noise sensitivity, light sensitivity that kept you from community, and now it’s doubly. You are dealing with grief. Covid is a loss. A loss of community. A loss of not being able to see family and friends. A loss of not going to a restaurant.”
But it’s a different type of grief, Coalson explained.
“It’s anticipatory grief,” she said. “You get anxiety, stress around it. You get worked up. It’s all about the unknown that causes the stress and anxiety. We (counselors) can help you acknowledge that loss. It is kind of scary. It’s all about the unknown and now it’s a double whammy.
“So how do we deal with that? One breath at a time,” she continued. “Take a step back. You have done a lot to get to where you are at right now. So maybe talk to someone on Zoom, Facetime. Practice self-care. It doesn’t have to be a whole hour. It can be 5-10 minutes of time for yourself. We can’t be joyful 24/7.
“During Covid it’s OK to have boundaries. We do a lot of care for others, now it’s time to focus on you. There are days where it’s just OK to take care of you.”
During the pandemic a counselor might not be seeing patients face-to-face, but that should not hinder a survivor from seeking therapy.
“I started out in hospice, and we did a lot of phone work. So I’m comfortable with phone work,” Coalson said. “Ask your therapist if they are OK with phone work, or doing a Zoom meeting.”
Speaking of counselors what should someone look for when searching for a therapist?
“A counselor can have a master’s degree. They can be social workers,” Coalson said. “Ask if they have their own therapist. Who do THEY talk to? We all get triggered. It’s OK to ask. And Ask about their training.
“Realize not everyone is a fit. Do you feel like you can be yourself?” she continued. “And remember it’s never about the therapist’s agenda. It’s about you. Be upfront, be honest.
“It takes a lot of courage to go to a therapist if you were not raised in that culture. Your life has changed, and it affects a lot of things. We can give you some tools to get back to your best self.”
Joanne Cohen facilitates the BIHF Zoom Survivor Series Seminar on the Benefits of Counseling Following a Traumatic or Acquired Brain Injury.
Recovery is a Process
Just as there are stages in physical recovery there are phases in mental recovery after a brain injury.
“I call them tasks not stages of grief, because you go back and forth in stages” Coalson said. “You just don’t go from one stage to another. It’s a process. And that’s the frustrating part.
“A grieving person with a mTBI is trying to live their life and trying to get others to understand,” she explained. “Your kids don’t know who you are and they are grieving, too. We can help with family support, setting boundaries, educating your family because they are grieving. Give yourself permission to say it’s OK to not be able to handle all the things you did before. Find out what you can do now. Advocate for yourself.”
Some people use alcohol or drugs to help them deal with the changes, but Coalson said there are ways to help someone who is struggling with addictions and depression.
“Addictions are not just drugs and alcohol,” Coalson noted. “A person could be a workaholic and be missing their family’s lives. Everything in moderation. I don’t tell someone to quit something unless they have a replacement. I can help that person find a replacement, be it exercise, art, AA.
“And a therapist can help you cope with some deep dark places that you go to. There are support groups we can suggest.
“We can come up with a safety plan and be adamant about it. Find someone who you can you talk to in your life. Do that first and commit to it. A lot of times suicides happen when no one is available,” she said.
Colorado Crisis Center 844-493-8255 (TALK) Text 38255
https://coloradocrisisservices.org/
National Suicide hotline 800-273-8255 (TALK) or text 741741 Deaf and hard of hearing: 800-799-4889.
NOTE: In 2022 the line will change to 988.
https://suicidepreventionlifeline.org/
And every state has mental health centers, so please find yours and keep the numbers handy.
No you are not imagining it! You are tired, exhausted, even more so after a brain injury. Why? Because it takes more brain power just to do everyday tasks, such as brushing your teeth, making coffee, taking care of the dog.
“A lot of people with mTBIs look fine, however they are operating on limited reserves as it takes more energy just to get through a normal day,” Coalson said.
By the end of the day, mTBI survivors have used up what used to be reserve energy, and find they are exhausted and cannot go out to meet friends or family, or even enjoy a Facetime call.
“A counselor can help you come up with a backup plan if you don’t feel comfortable with saying you are feeling fatigued,” Coalson said. “Give yourself permission to set boundaries. Figure out what you can control, such as go to that Thanksgiving party, but leave early.”
Don’t kid yourself. A brain injury will disrupt your sexual relationships.
“The way you look at yourself has changed and that affects your sex drive,” Coalson explained. “Your self-image is already vulnerable. You don’t feel good about you. So it’s about delicate communication. You have to do this as a couple. It takes a little effort, but it’s workable. And you have to have a partner who wants to work with you. You can’t do it alone.”
Also check with your medical doctor about a disruption in the hormonal process. It has been proven that a brain injury can damage the hypothalamus and/or pituitary gland, which can result in hormone imbalances.
What we say to ourselves and ruminating can be helped by talking to a therapist.
“Remember we can be our own worst enemy with all the self-talk,” Coalson said. “A therapist can help you with your thoughts. A therapist can be another voice, another support system, who can show you how to look at things with simple fixes.”
A counselor can help survivors see things in a new light and introduce ways in which to do things differently, but the patient has to be willing to do the work.
“Think about school, if you just sit there and don’t do the work you won’t get much out of it,” Coalson said. “It’s the same with therapy. You have to work with me or you will be a bystander. No one is a fix all. My job is to get you to the next phase, and get you some support. We can help you tweak ways in which you do things, but you have to willing to do the work. It can’t be me just telling you things
“And be honest with your therapist. If they suggest something that you are not going to do, say so. We can come up with a different strategy. You are your own advocate in our sessions.”
Coalson went on to explain that being your own best friend might be the best thing you can give to yourself.
“Slow down. Give yourself permission to be in the moment. Grief is a garden of compassion. You would not talk to your best friend the way you talk to yourself. Be your own best friend.”
By Eliza Marie Somers
To describe the year 2020 as vexing, exasperating and terrifying is an understatement as the coronavirus pandemic remains a deadly cloud over our everyday lives. Add in a traumatic brain injury and the anxiety can be unbearable at times.
However, Joanne Cohen, vice president of the Brain Injury Hope Foundation, gave mTBI survivors 13 rays of hope during the first virtual Zoom Survivor Series – Getting Hit, Getting Up, Moving Beyond: 13 Keys to Re-empowerment During the Covid-19 Challenge, on June 26, 2020.
“How can we re-empower ourselves during this time?” Cohen asked. “Acceptance, adjustment and compassion. It’s about how we respond. We have the power to advocate for ourselves. I’m sharing with you today what trauma and adversity has taught me about resilience.”
Cohen, who just published the book “Getting Hit, Getting Up, Moving Beyond: My Journey Through Brain Injury,” stressed that all these keys may not work for everyone, but to take away what will work in your life and during your recovery. To purchase Cohen’s book
One of the key steps (No. 10) is finding the “golden nugget” in times of turmoil, Cohen explained, and asked the Zoom participants to add their silver lining to facing a pandemic while recovering from a mTBI.
Jennifer responded that she was prepared for the isolation that came with coronavirus pandemic because while recovering from an accident she was already living in isolation. Julie learned to connect with people from home via technology, and Russell said his mTBI recovery made him better able to handle the Covid-19 pandemic. While Susan said an attitude of gratitude has helped her be resilient. Francesca added that she is learning to take better care of herself.
Acknowledging what is happening (Key No. 1) and taking small steps to address the stress are essential ways to thrive in times of uncertainty, Cohen said. “Covid-19 has rocked our world. It’s how we choose to respond to it. (Key No. 12) We need to reframe how we react and think.”
Cohen then quoted Jacob Meyer, a therapist with Integrated Health Systems of Denver.
“Dealing with uncertainty is opposite of routine. Human beings tend to thrive in routine with smaller breaks in uncertainty. Routine allows us stability… Coronavirus has brought uncertainty on multiple levels … Understand that this stress is a normal occurrence, everyone is experiencing it to some degree.”
The isolation and lack of control everyone is experiencing during the pandemic are familiar to the mTBI community. Meyer was quoted, “shame, fear, self-criticism all thrive in states of isolation. It is natural to feel that way.”
Dealing with grief is a big key to thriving during the pandemic, as we have lost control of our lives.
“What is not healthy is stuffing these feelings down,” Cohen said. “Grief manifests itself and affects the physical, emotional, cognitive and behavioral aspects of one’s life. Give yourself permission to grieve. By addressing grief it will be easier to recover.”
For more on grief and counseling after a brain injury, here is a link to the blog on our Survivor Series Counseling after a brain injury.
Key No. 2 Focusing on our ability and not our DISability is vital Cohen stresses. “We are all too aware of our isolation and limitations. This is new learning for all of us. … As a group we are used to challenges and stepping up to the plate to protect ourselves and others.” It’s about finding that golden nugget Cohen suggested at the start of the seminar.
Living your life to the fullest (Key No. 3) can help us during these intense times. “This is what it is, and it’s how we choose to react,” Cohen said.
Self-care techniques are helpful and may include playing with your pet, taking a walk to a new park or exploring your neighborhood, playing online games, learning a new hobby. It’s about finding positive ways to fill the gaps while nurturing your soul.
Key 4 is being your own advocate and No. 5 is trusting the process and being creative.
“If it’s meant to be it’s up to me,” Cohen said. “Be resourceful and advocate for yourself or find someone who will be your advocate. Accept one day at a time. There is transformation in the midst of Covid-19 – look at how Mother Earth is beginning to heal. Find a support group of like-minded individuals.
“This too shall pass,” Cohen continued. “Be creative. Reframe the process. I had a birthday during Covid, and we changed how we celebrated. We read cards over Zoom. I met people in parking lots for coffee and dinner. It was great. And I turned my garage into a meeting place where we can socialize while maintaining 6 feet.”
Developing a support team and thriving is Key No. 6. Kevin said he is leading a TBI support group where he shares what he has learned. You can contact Kevin at [email protected]
Cohen noted this is a great example of not waiting for others to reach out to you.
Using masks, staying at home and practicing social distancing are examples of Key No. 7 Move into the world safely. “Be mindful, and do what’s best for you and others,” Cohen said.
Ask for help is key No. 8. “It takes a strong person to ask for help,” Cohen explained. “You could use the NextDoor app to ask people to go to the grocery store for you. … surrender and lean into this. You can’t assume people know what you need.”
Compensation is the crux to No. 9 Compensate! Compensate! Compensate! “You can’t do everything the way you used to do it so find ways to compensate,” Cohen said, then gave her birthday celebration as an example of compensating during Covid-19.
Julie stated she reads bedtime stories to her grandchildren over Zoom. Vicki turns off the news and social media when she feels overwhelmed.
No. 10 goes back to being positive – Look for silver linings. Those golden nuggets. Darren said he is enjoying more family time during the pandemic. Susan is focusing on her art projects and is writing more, while Vicki says working from home is a blessing because there’s less noise and light. And Jeffrey said the human race needs to prioritize its thinking and we will come out wiser.
Helping others IS helping yourself is Key 11. Cohen noted that while homeschooling your children you can discover how your child learns, along with finding a new appreciation for teachers. “Give to give instead of giving to get,” she said.
No. 12 Your Journey, Your Life: You Choose How Your React or Respond to It is about adapting, adjusting to change, surrendering, leaning in and knowing it’s OK to have a “bad hair” day, Cohen explained.
Susan said she is sewing masks as her way of responding to the pandemic.
No. 13 is Resiliency is a Key to Survive AND Thrive. “It’s an inconvenience for all of us,” Cohen said.
Staying positive, having structure to your day, getting and staying connected to others are just a few of the ways to implement the baker’s dozen of keys to moving beyond the pandemic while recovering from a brain injury.
By Eliza Marie Somers
BIHF Vice President Joanne Cohen, standing left, greets the February 2020 Treatment Panel participants: Nancy Bonifer, standing left to right, Candi Boyd, Dr. Eric Spier, Dr. Jeff McWhorter, seated left, and Dr. Shane Steadman.
Working with “non-traditional” doctors while recovering from a brain injury has helped many survivors, who are part of the Brain Injury Hope Foundation community. To help others overcome hurdles, the BIHF held a panel discussion February 13, 2020, with several healthcare providers, who doled out information about their services.
Joining our panel at the West Metro Fire and Training Center in Lakewood, Colorado, were:
Nancy Bonifer, PT, DPT, MS
Dynamic Recovery Physical Therapy
6638 W. Ottawa Ave., Suite 115
Littleton, Colorado 80128
303-872-7240
Candi Boyd, MDIV-Chaplain
Craig Hospital
3425 S. Clarkson St.
Englewood, Colorado
303-789-8000
Dr. Eric Spier, Neurologist
Craig Hospital
3425 S. Clarkson St.
Englewood, Colorado
303-789-8000
Dr. Shane Steadman, DC, DACNB
Integrated Health Centers
601 South Clarkson Street, Suite #420
Englewood, Colorado 80113
303-781-5617
Dr. Jeff McWhorter, DC
McWhorter Chiropractic and Neurological Rehabilitation
7000 S. Yosemite St., Suite 260
Centennial, Colorado 80112
720-893-8950
720-717-4748
“Every TBI is unique,” Spier said. “I relish the environment that I’m in because of the access to a lot of resources. I work with a large team that supports one another. … We work with smaller amount of patients to accomplish that.”
Working with a smaller amount of patients has its drawbacks in that it limits the number of survivors Craig Hospital can service.
“We provide a beacon for other hospitals and providers,” Spier explained. “I value the time with my patients and the results that we are achieving, but it can be frustrating that we cannot see more people. It’s an enormous disadvantage that we can’t take care of more patients.”
Boyd, who is a chaplain at Craig Hospital, touts working with the whole person during their recovery as Spier noted that “it’s important to provide a multi-faceted approach to recovery.”
“Rehabilitation includes the entire self, including the spiritual self,” Boyd explained. “The spiritual self gets altered, too, when you have a TBI. I help to provide a spiritual context to help the patient.”
Boyd cited an example of using hymns or Scripture passages to help the patient with speech therapy and recall.
“We can go through the lyrics or Scripture together and maybe they (the patients) can remember the next verse or word,” she said. “And then the words come easier and easier. It (spiritual practice) provides a centering for the patient that they can come back to. It’s something meaningful to help them in recovery.”
Steadman used an analogy of a car mechanic to describe his approach to TBI recovery.
“If your car is not working, you take it to a mechanic, who does a whole work up or diagnostic on the car. That’s what we do,” Steadman explained. “We look at the whole person, not just one part. We do a full workup. Blood work. Eye – visual performance. Hearing – vestibular problems. We look at whiplash and the neck.
“We see what is working and what is not working, and we can pull all of those things together and start working on them individually.”
McWhorter, who sustained six TBIs, speaks from experience. After his last TBI, he used the Gyrostim in his recovery.
“It helped me get my quality of life back fast,” he said. “It is a phenomenal module. It stimulates the brain through motion. Patients are instructed to hit targets in a certain order while in the Gyrostim. I’ve found validity with the Gyrostim.”
The Gyrostim is also being used by professional athletes to increase speed of processing, something that tends to slow after someone suffers a TBI, and is just one of many modules in McWhorter’s practice. His clinic also utilizes acupuncture, hyperbaric oxygen therapy, Neurofeedback, and Class IV laser therapy.
“We touch on every aspect of a brain injury,” McWhorter said.
He then related one of his success stories concerning a patient, who suffered a massive stroke, and came to his office needing her husband to carry her. After oxygen therapy and Gyrostim therapy, the woman was able to walk with assistance in just three months.
“There is always hope,” Steadman said. “The neuroplasticity concept (the brain will make new pathways to accomplish tasks) is giving people hope. It can take a bit of time, but don’t get discouraged. As you activate the neurons in the brain they become more active.”
Bonifer, who works one-on-one with clients and tailors the therapy room to each person’s needs, such as dimming the lights or taking a clock out of a room if it’s too loud, cited setting small goals and looking at your accomplishments during your therapy.
“It (recovery) does not happen overnight,” she said. “Neuroplasticity can take some time to master a set of skills.”
“We all build on neuroplasticity in different ways,” Steadman said, noting that diet and sleep are also huge during recovery. “You want to decrease inflammation.”
Insomnia can be a big hurdle for many TBI survivors, and McWhorter stated he has had success with neurofeedback therapy along with oxygen therapy in helping patients gain meaningful sleep.
One audience member asked for guidance in choosing therapies: I’m running out of energy to try new things. I’m excited and exhausted, she related.
“What gives you joy?” responded Boyd. “When searching for the next option ask yourself what is OK for me right now. And remember you don’t have to be more than who you already are at this moment. It’s who you are now. It’s OK to be where you are now.”
Steadman noted that he is working with a patient, whose identity was wrapped in who he was before the TBI. “It’s OK to press the pause button,” he said. “You don’t have to stop enjoying life. Self-care is the most important thing you can do now.”
“Take a vacation from treatment,” McWhorter suggested. “You still have a life to live. Going to doctor to doctor and therapy A to therapy B becomes your life. All caregivers have ways to modify so you don’t feel imprison or consumed by your diagnosis.”
Bonifer advised getting back to basics. “Maintaining a positive attitude, drinking water, eating healthy food, exercising – these are all things that will help you.”
Spier explained that even though Craig Hospital is limited in its reach to patients, what the staff learns is, in turn, related to communities. “We are building community. We provide resources to empower communities to get out there and change their structure, such as developing partnerships with organizations that help the TBI community. How can we develop resources that can make a difference in creative ways? It’s an uphill battle. And Craig is not the Holy Grail. Focus on people who can help you.”
Boyd, the chaplain at Craig, stated, “The reality starts after our patients leave our setting. How do you make all these tools that we developed in therapy work in real life? You need to find a community. It’s hard to live life in a silo, but stepping out into the community is hard.
“You have to be an advocate,” she continued. “If your church is too loud, talk to the pastor and spiritual community. They don’t know what they don’t know. Maybe they can dim the lights or lower the sound.
“And remember, YOU are the author of your greatest story,” Boyd said. “You get to write the next chapter. How are you allowing your true self to form the story you want to write?”
-By Eliza Marie Somers
