Ken Collins: Reflections on Recovery from Head Injury

Jul 22, 2015 by

Ken Colins, Program Director San Juan Center for Independence-Gallup

Ken Collins, Program Director San Juan Center for Independence-Gallup

An Interview with Ken Collins: Reflections on Recovery from Head Injury

Michael F. Shaughnessy –

Q: Ken, first of all, what is your exact title, and what would you say you do?

San Juan Center for Independence-Gallup, Program Director, where I supervise three staff members and oversee independent living skills, peer support, advocacy, information and referral, nursing home transition, Personal Care Option (PCO) home care services to people with disabilities and elders in McKinley County. SJCI-Gallup is a non-residential, cross disability organization and is one of a network of ten independent living centers in New Mexico. All independent living centers are locally controlled private non-profit tax exempt, 501 (c) (3) organizations with their own board of directors who oversee each independent living center programs and services. All independent living centers are funded through the Department of Education and provide the core services I mentioned above. However, some centers don’t provide home care through the PCO.

Q: How did you first get involved in brain injury and head trauma?

I received my brain injury 38 years ago on December 31, 1976, after running a snowmobile headfirst into the side of a parked car. I have a month missing from this accident and only remember Christmas Eve and then don’t know anything until I woke up standing about six inches from a mirror in my parent’s bathroom picking the wires in my mouth. I came out of darkness through a fog to clarity. I knew I was home, I played baseball and my name was Ken, but I didn’t know anything about home, baseball or Ken. My mouth was wired shut because when I hit the car I broke my jaw below my chin on the left side and rammed my right jaw bone into my ear canal, separated my skull completely (cap fracture) and knocked out a tooth and broke a rib.

My rehabilitation began by trying out for the Seattle Mariners Baseball team nine months after my brain injury. This helped with kick starting my neuroplasticity and recovery process. Lucky for me I had collected a big box of personal items from when I was in the 7th grade till being 26 yrs old when the accident happened. Every day for about six months I went through that box to put myself back together. There were old get well cards, love notes from old sweethearts in Jr. High and high school, stuff that only meant things to me kind of thing. There was a journal I kept one summer in 1972 when I played on the Danville Warriors Baseball team when we took the Class A, Midwest League Championship.

There were old Milwaukee Brewers Baseball contracts, newspaper stories, college scholarship offers – stuff like that. After my tryout with Seattle, I became very active over the next five years conducting business as a community organizer. I helped establish the Westfir Workers Association in its attempt to purchase the closing Chicago-based Edward Hines Lumber Company in Westfir, Oregon. This provided me with purpose and meaning in my life again. This also provided me with the structure I needed that is critical during the early stages of recovery from a brain injury.

In 1983, I got hired at one of the first residential brain injury programs in the country (Center for Neuro Educational Therapies) that began my formal training about brain injury. In 1985, I was a founding member of the Oregon Head Injury Foundation – in 1988 was elected to the National Head Injury Foundation and served on the NHIF board for 6 years.

In 1986-88, as a VISTA Volunteer, I worked with Bill Uhlhorn at Eugene Emergency Housing to establish the first independent living program in the US for people with brain injuries the Uhlhorn Apartments. From 1990 to 1992 I was elected vice president of the NHIF Survivor’s Council and also helped to get a congressional investigation of the head injury rehabilitation industry that resulted in FBI raids on New Medico which resulted in New Medico facilities closing across America.

Q: Can you talk about the impact of stress on a person that has suffered either an open or closed head injury?

A: Stress is something that affects everyone – it is a biologic event and why it is so very important for people with brain injuries to be aware of and control. This is especially true since it is well known that whatever problems someone has before their injuries these problems are magnified. This is true for the limbic system fight or flight response too since stress is what triggers the fight or flight response. Life in general is pretty stressful after a brain injury. Stress is something that all people with brain injuries experience. Relationships are stressful. Short term and long term memory issues are stressful.

The loss of not being the same after your brain injury is stressful. Having friends leave because they don’t understand brain injury and don’t come to visit anymore is stressful. Not being able to go back to work after your brain injury is stressful. Having people treat you differently after a brain injury is stressful. The stigma of brain injury is stressful. Having to go to appointments and doctors visits is stressful.

I first noticed how stress affected me when my friends came to visit me at home after my brain injury. I couldn’t always remember their names. I knew they were my friends because I could recognize their faces but the harder I tried to remember their names the harder it was and then could feel my body tense up as I tried my hardest to remember their names. The more my muscles tensed up the harder it was for me to remember their names. This was also true when I went through those years of “word find” issues. The harder I tried to find the missing word in what I was saying the harder it was to remember.

I recently read something about stress and the brain by the Franklin Institute that helped me understand why that happened – “Why We Lose Our Memory – Stress hormones divert blood glucose to exercising muscles, therefore the amount of glucose – hence energy – that reaches the brain’s hippocampus is diminished. This creates an energy crisis in the hippocampus which compromises its ability to create new memories. That may be why some people can’t remember a very traumatic event, and why short-term memory is usually the first casualty of age related memory loss resulting from a lifetime of stress”.

Before my injury, I was a professional baseball pitcher and learned about biofeedback and my muscles tensing up. A good pitcher has to remain relaxed during stressful situations or they don’t last long in professional baseball. With runners on base with no one out and a one run lead in the bottom of the ninth inning it is very important to keep your poise and stay cool, calm and collected. You have to be in the moment, concentrate and focus on the tasks at hand. If you don’t stay relaxed your wrist will stiffen up and when you pitch the ball it will not have any movement on it. This will make the ball straighten out and your fastball will become easier to hit.

Because I had this knowledge and awareness of biofeedback it has made it easy for me to understand the dynamics that stress has on my life and this has provided me with some insights about how stress affects me after my brain injury recovery. Deep breathing and relaxing is something I do naturally. This has played a very useful role in my brain injury recovery process because it has helped me manage the limbic system fight or flight response.

Q: You have spoken at several conferences about head injury. Tell us about a few of them, and your reception.

A: This will be my 5th year in a row presenting at the Southwest Conference on Disability. Much of what I’ve talked about over the years has been giving people attending my presentations an historical perspective in terms of what I’ve done over the years so they know I’m not talking about theory but experience-based knowledge. I have also talked about how things have changed since I first got involved with head injury rehabilitation in 1983. Back in those days there were very few services available in the community and the first place I got hired was a residential program for people with head injuries – Center for Neuro-Educational Therapies (CNET).

I was a founding member of the Oregon Head Injury Foundation in 1985 and got involved on a national level in 1988 with the National Head Injury Foundation. I sat on the NHIF board of directors for six years and resigned in 1995 to start working with people with developmental disabilities for five years in Oregon before moving to New Mexico in 2000, to work at San Juan Center for Independence (SJCI) for three years as a life skills coach before being offered a job at a developmental disability provider in Gallup for five years and then being asked to come back to SJCI as the program manager. All of this experience has helped me understand the difference between someone with a developmental disability and a brain injury. Unfortunately, many professionals don’t understand the difference.

In 2010, I presented on creating supportive housing for people with brain injuries modeled after the Uhlhorn Apartments program in Eugene, Oregon. The Uhlhorn Apartments uses some common sense technology to help people with brain injuries live in a stress free environment as possible. Example: Timers on the wall of the apartment close to the stove. Before the burners on the stove can be turned on a timer must be activated. The timer is set so that the person with the brain injury doesn’t leave their stove on and cause a fire.

Once the timer runs down the stove is turned off. Cupboards in all the apartments are open so the residents can see where their food and close are stored. These simple environmental adaptations make it easier and less stressful for brain injured residents to start their days off. Combine this with having short term memory problems – visual cues are very important. Back in the early years of my recovery when my day started off on the wrong foot it would take me the whole day to start getting back on track. Now, I know this was because of the limbic system fight or flight response that was triggered by the stress of having something go wrong and then beating myself up over it.

In 2011, I talked about the lessons I learned over the last 34 years of living with a brain injury to help professionals, service providers and state agency representatives recognize the positive benefits for people with brain injuries to relieve stress so they can achieve happiness and joy during their recovery process.

Abstract for my presentation:

Achieving Happiness & Joy after Brain Injury @ 61 from Chaos & Turmoil to Balance & Harmony

Happiness and joy is a journey with many obstacles and barriers to overcome.

Finding happiness and joy in your life after brain injury – is healing.

Relieving stress and anxiety will make the journey easier.

Relieving stress and anxiety in your life – is healing.

Setting a routine will help relieve stress and anxiety and will provide you structure to make planning and problem solving easier.

Setting a routine and sticking to it – is healing.

Finding purpose and meaning in your life will help motivate you and provide the means to persevere and move on and hope for a better day.

Hope is healing.

Finding discipline will help you follow though and be accountable for yourself and help regulate the impulsive behavior sometimes caused by most brain injuries.

Being accountable for your actions – is healing.

Respect for others and self-respect will help you regain self-confidence.

Regaining self-respect and self-confidence – is healing.

Exercise everyday and good nutrition makes life easier.

Exercise and good nutrition – is healing.

A supportive family and friends helps build trust in yourself and others.

Trust is healing.

Learning about your brain injury and talking about it makes life easier.

Making life easier – is healing.

Finding a support group or a good friend to speak with about this is a good idea and helps you heal the unseen injuries caused by your brain injury.

Talking to others about your unseen injuries – is healing.

Being content with who you are and how you live is very important after a brain injury.

Being content – is healing.

Finding happiness and joy after brain injury is the key to recovery.

Happiness and Joy – is healing

In 2012, I presented on Accessing Life after Brain Injury – Public Service, Political Action & Community Organizing. After sustaining a brain injury in 1976, I had to start life all over again. Through public service, political action and community organizing, I regained meaning and purpose in my life and overcame many obstacles and barriers placed before me through hard work, self-determination in structured settings. I talked about how trying out with the Seattle Mariners and organizing the Westfir Workers Association (WWA) to purchase the closing Chicago-based, Edward Hines Lumber Company operations in Westfir, Oregon helped me find the purpose and meaning it takes to move on after a brain injury.

Lane County came in a did a feasibility study that lead to the establishment of a local economic development corporation – Upper Willamette Economic Development Corporation (UWEDC) where I became it’s executive director for four years. This provided me with the structure and skills to rebuild my self-confidence and improve my self-esteem. It also gave me a reason to get up in the morning and be responsible for myself.

In 2013, my presentation was: Brain Injury Recovery Using: Emotional Freedom Techniques (EFT Tapping) Eye Movement Desensitization and Reprocessing (EMDR) and Mindfulness Meditation Training. Below is a brief description of my presentation.

Abstract:

Ken Collins will discuss how he utilized Emotional Freedom Techniques (EFT Tapping), Eye Movement Desensitization and Reprocessing (EMDR) Techniques and Mindfulness Meditation Training to overcome problems with my brain injury he experienced after being attacked by a burglar with two knifes at his home on June 20, 2013.

Ken took 6 weeks off on medical leave because the PTSD from this incident brought back several issues with his brain injury he had resolved 15-20 years ago. His vision, balance, equilibrium and memory were all affected negatively after the attack. Ken was unable to overcome these issues by himself and started counseling with to assist him with these challenges.

His counselor used EFT, EMDR and Mindfulness Meditation Training to help him overcome the problems he was experiencing and then after going back to work in August, his attacker came by his worksite to harass him and wasn’t arrested. The DA’s office lawyer had told Ken on several occasions during court proceedings that if his assailant came by his home or office to call the police and he would be arrested.

So, when he did and Ken found out that the DA’s office failed to get him the protection order he needed to keep him safe. This event sent Ken into a tailspin and magnified the issues he was working on from the knife attack. Now, in addition to those issues Ken was very angry and felt vulnerable because he felt unsafe at work and at home.

Ken’s counselor continued to offer him Mindfulness Meditation Training, EFT and EMDR for 12 weeks after this and now Ken has regained his composure and has returned to work and regained his self-confidence so he can continue down the road to recovering from his brain injury.

Ken Collins will discuss what happened to him during and after the knife attack and how this affected his brain injury. Ken will also show how Mindfulness Meditation Training, EFT tapping and EMDR techniques can help other people with brain injuries with their recovery process.

In 2014, I did a Poster Board Presentation at the Southwest Conference on Disability: Creating a Quality Life for People with Brain Injuries Using Neuroplasticity, Mindfulness Meditation and Mindfulness-based Stress Reduction. I also did a presentation on the Uhlhorn Apartments in Eugene, Oregon where I talked about the environmental stress reduction features of the program.

All of my presentations have gotten good reviews by the people who attended. My guess is this is why I have been asked to return over the last five years to present at the Southwest Conference on Disability.

This year in October, I will be presenting: The Biology of Brain Injury – Controlling the Limbic System Fight or Flight Response. I will discuss the critical need for people with brain injuries to learn about the role the mid-brain and limbic system plays in triggering the “fight or flight” response under stress. When fight or flight is triggered people with brain injuries are in a reactionary mode which affects everything they do – processing, problem solving, decision making, planning, memory, etc.

Q) I understand that you are slated to speak in August at a very special conference. What will you be speaking on and what is the exact title of the conference?

I will be presenting at the Native American Brain Injury Summit in August. My presentation will be about controlling the fight or flight response for Native Americans with brain injuries.

Q) What kinds of information do survivors of head injury and brain trauma need?

A) I think the most important thing is to become more aware of what stress does to them so people with brain injuries can play a more active role in managing their recovery process instead of reacting to it. Once the fight or flight response is triggered it is hard to turn off if people with brain injuries don’t have the skills (Mindfulness, EFT, EMDR, relaxation techniques, etc.) or as I like to say: “Find Your Happy Place”. All of this takes a lot of work and won’t be easy for many people with brain injuries – unless they have some basic understanding about stress reduction like I did before my injury. Mike, as you know there is no quick fix to any of this.

But with awareness of the role stress plays in their lives and then an understanding about how the limbic system fight or flight response is triggered under stress most people with brain injuries can become less confused and angry. My hope is that being able to improve their wellbeing by managing stress – people with brain injuries should be able to improve their self-confidence and self-esteem. This will also give people with brain injuries the opportunity to take ownership of their recovery process. Taking ownership and becoming less dependent on others will improve their self-confidence and improve their self-esteem. Win-Win!

Q) We have all heard about the “fight or flight “syndrome back in Psych 101. But how is it relevant to those with head injury?

A) This is why what I’m saying is so promising for improving the quality of care for people with brain injuries. Since doctors, educators and professionals already know about the fight or flight response they just need to pass on the importance of regulating stress so the fight or flight response is managed. I have been living with my brain injury for 38 years and know firsthand how stress has created chaos and turmoil in my life. I thought professionals knew this already until I was at a Brain Injury Resource Center, peer mentoring training and found out differently.

I think professionals in brain injury have been so busy treating the symptoms of brain injury (sympathetic nervous system/limbic system fight or flight response) that they haven’t looked at how empowering people with brain injuries would help manage these symptoms.

Mike, I see two problems with all of this. 1) Getting doctors, providers, educators and brain injury professionals to “value” what I am saying and then incorporate it into their practices. 2) Getting brain injured individuals to do the work (Mindfulness, EFT, EMDR, relaxation techniques, etc.) it takes to control their stress so they start seeing a difference in their lives.

I was hard wired for my brain injury recovery process to take hold because of my understanding about what stress does and how to react to it – biofeedback/deep breathing/relaxation/keeping my poise. The mindfulness of this process improved my wellbeing and has given me the hope I needed to carry on and not give up. The majority of folks with brain injuries don’t have this understanding before their injuries and it will take them time to see the results. I also have the will and self-determination it takes to improve my condition and get better. I realize understanding controlling stress so the limbic system fight or flight response is managed won’t work for everyone because of the extent of some people’s injuries. That being said, there are many who can and will use this information to improve their lives.

If we can improve the lives of some people with brain injuries that will be a start and then other people with brain injuries might be more willing to give it a try. I know understanding how I have gotten better since my brain injury has helped me control the stress that triggers the limbic system fight or flight response. This information has also helped others too. Lets’ give this information to others and see what happens.

Since you already know about the fight or flight syndrome from “Psych 101” it should be easy for you to spread the word about why controlling stress so the limbic system fight or flight response isn’t triggered for people with brain injuries. Thank you for giving me the opportunity to help spread the word about my brain injury recovery process.

Below are some additional resources:

  1. The Human Brain – Stress – The Franklin Institute

learn.fi.edu/learn/brain/stress.html

The sympathetic nervous system (SNS) turns on the fight or flight response. In contrast … The primary area of the brain that deals with stress is its limbic system.

Amygdala hijack fight or flight response|how to … – YouTube

Video for limbic system fight or flight response youtube[Right-pointing black triangle] 1:34

www.youtube.com/watch?v=nZwajAJzG-M<http://www.youtube.com/watch?v=nZwajAJzG-M>

Jul 22, 2013 – Uploaded by How to Stop Anxiety News

This anxiety switch controls what is called the fight or flight response. In a persons day to day life, your …

 

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2 Comments

  1. Avatar
    Barry P. Vining, M.S., CRC

    Thank you Ken. Your story has parallel messages to mine, including; the Limbic system becomes more active than the typical functioning brain in individuals recovering from brain injury because when establishing a new neural trace to permanent memory chunks in grey matter as the brain rewires itself, the flood of data released includes many cross-associated recollections triggering hyper-emotional responses releasing cortisol and adrenaline, often becoming a moment of psychological trauma in itself. Learning to cope with stored memories is healing, a necessary part of recovery.

  2. Avatar
    Ken Collins

    I am interested in receiving comments for this post.

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