Review: Coping with Concussion and Mild Traumatic Brain Injury by Stohler and Hill

This was hands down the best book I have read about treatments for brain injuries. When I picked it up at my library I didn’t expect much, it was not a book I’d heard of before, I only picked it because our library has no other books about brain injuries. But then I started reading and I was blown away by it’s layout, clear language and thoroughness.

It can be found by it’s longer title, Coping with Concussion and Mild Traumatic Brain Injury: A Guide to Living with the Challenges Associated with Post Concussion Syndrome and Brain Trauma, and is written by Diane Roberts Stohler and Barbara Albers Hill. I think the language and thoroughness of this book may be overwhelming to those that have a brain injury but it is the perfect resource for any support person. 

The book begins by discussing the anatomy and physiology of the brain and a variety of brain injury terms and injuries. This section is probably the most clear and concise version I have ever read and should influence how health care practitioners start speaking to their patients. A real understanding of what’s going on under the skin can do wonders for friends and family members’ compassion.

The book continues by breaking down symptoms into physical, mental, and emotional. The authors list the widest scope of symptoms that I’ve ever found in one resource and break each down into how it looks/feels, typical interventions, alternative interventions and what can be done at home as interventions. I found the format easy to follow and makes it easy to come up for a plan for moving forward – whether it is questions to ask a doctor or behaviours and routines to start practicing at home. This book succeeds in making treatments seem accessible and giving even this jaded writer hope for those new to the brain injury world.

Wrapping up the authors continue to explore all aspects of brain injury by discussing what recovery can look like, how to live together post brain injury and what advances in medicine are on the rise for brain injuries.

This is an incredibly helpful book that navigates brain injuries from a clinical rehab point of view. Unlike my other favourite books it does not include sympathy or funny stories to help the support system understand how hard rehab is, but it is the perfect guidebook for coming up with a plan of action.

Matrix Repatterning for brain injuries

Treatment type: Matrix Repatterning

How to find: http://matrixrepatterning.com/Pa_practitioners

Price: Often $100-250.00 an hour

Credentials: Look for someone listed on the Matrix Repatterning website, they will include the designation CMRP after their name and other designations

What is it? From Matrix Repatterning

“a form of manual (hands-on) therapy, which is applied to the deeper, denser parts of the body, such as the skeletal framework (bone) and the dense fibrous tissues (fascia) associated with the internal core structures.  Areas of injury and strain may be precisely located based on an alteration in the mechanical and electrical properties within these tissues.  Treatment involves the application of gentle pressure in order to release tissue tension, which can facilitate the restoration of muscle tone, flexibility, joint mobility and optimal biomechanical function.”

Notes from our treatment:

Matrix Repatterning is another hands on modality we sought out during Jason’s recovery. It was mentioned in Norman Doidge‘s book The Brain’s Way of Healing and we are lucky enough to live 25 minutes away from the founder of the technique. Parts of the treatment reminded us of osteopathy in it’s holistic view of Jason’s body and injuries and the gentle manipulation used to treat injuries. The most stunning part of the appointment for us was that Dr. George Roth (the founder) spent almost an hour assessing Jason’s gait, balance, reflexes and range of motion. 7 months into Jason’s recovery this was the first objective assessment that had been done and the first time his tracking issues were brought to our attention (which we would later understand with behavioural optometry).

Treatments were weekly and again Jason was often able to fall asleep on the table. As with osteopathy he usually enjoyed a deep, long sleep post treatment. Based on Jason’s assessments the goal of Matrix Repatterning for him was to help with healing in the brain which should in turn minimize the differences in his reflexes and tracking issues. Unfortunately with goals as broad as that and a limited budget for care we were unable to continue treatments long enough to be sure if they were making a difference. We’ve talked to others, and certainly read stories, of people that experience tremendous results and swear by Matrix Repatterning so again I encourage you to do your own research.

Massage therapy post TBI

As a massage therapist, I’m fairly biased on this subject. I believe my colleagues and I can do a lot of work to contribute to pain reduction and calming down the nervous system. I’ve seen a lot of great benefits from registered massage therapy in the post concussion/ post TBI group but of course this remains an individual journey.

Treatment type: Registered Massage Therapy

How to find: http://www.cmto.com/

Price: In Ontario often $85.00-100.00 an hour

Credentials: Look for someone registered with the massage therapy college in your province, I’ve linked to Ontario’s college above

What is it? From the CMTO

“Massage therapy consists primarily of hands-on manipulation of the soft tissues of the body, specifically, the muscles, connective tissue, tendons, ligaments and joints for the purpose of optimizing health.”

Notes from our treatment:

Due to the visual issues Jason experienced (non diagnosed until 1 year into recovery) his gait changed drastically, from a strong confident man to a gait similar to that of a stroke survivor. One side shuffled more than walked and he had acute low back pain repeatedly in that first year.

Massage therapy with some of my colleagues in our hometown alleviated a lot of to his pain and helped even out tone between the two sides. Registered massage therapists are educated in anatomy and physiology and were able to assess his range of motion and tone throughout his upper body. While some areas were uncomfortable to be worked Jason always felt relief post treatment. Often the chance to lie down mid day and have a massage also lead to a deeper sleep in the evening.

As a massage therapist I find with most of the clients I work on slow, gentle manipulation goes much further than the adage “no pain, no gain”. It’s not necessary to be in pain throughout your whole treatment or feel like you’ve been hit by a truck post treatment. Registered Massage Therapists in Ontario are educated use range of motion exercises and stretching as part of their treatments which can help significantly if you are experiencing any symptoms of decreased mobility or coordination on one side. All treatments should be explained to you before you get on the table and your massage therapist should be checking in with you about pressure and if you understand and want the treatments they are proposing.

Finally, I’d like to remind everyone reading that in most treatment facilities some of the environment can be altered – I often turn off lights or music to help those with sensory issues post TBI. Your therapist may not know to suggest these accommodations so please ask for anything you need to maximize your benefits from the massage. Also don’t assume because you have a head injury your treatment must be localized to head and neck, as in Jason’s case often symptoms show up throughout the body and a global approach to treatment can be beneficial. Communication with your massage therapist is key and will help you decide if this is an intervention to include in your rehab program.

Treatments we’ve tried

A few weeks ago we spent some time outlining the traditional treatment options (OT, SLP, etc) that we pursued in Jason’s recovery.

Over the next few weeks we’re going to discuss some of the other treatments we’ve sought out such as osteopathy, Matrix repatterning and Naturopathic medicine. Of course we’ve already shared our story about how behavioural optometry has helped Jason and will continue to update how we see changes from that intervention.

It’s important to us to outline that not every treatment is right for every person and none of our stories should be taken as prescriptions or orders to seek out a new treatment. We’re lucky that I work in the health field and have called in favour after favour to get Jason seen by people I trust and refer to often. Within my practice I treat many individuals with traumatic brain injuries and we share stories and names of practitioners on a regular basis but that is no guarantee that results will be consistent. Every brain injury is different, every individual is coming into treatments at different levels of functioning and health and results will always vary. If a certain treatment story resonates with you I encourage you to read the links I include in every post and find a good fit for you. Geography and financial limitations will also come into play during your journey with TBI and you always need to make your own decisions that suit your lifestyle.

On the note of financials, there are a lot of studies that show that those with TBI often have to file for bankruptcy or are faced with financial troubles. In just over a year we’ve thrown about $40 000.00 at brain injury treatments (including lost income because that is part of recovery in my mind). No one, including us, can tell you what your financial investment should be in your brain or how you decide that. We’re gut reaction people, if research resonates with our story and the practitioner seems like a good fit that listens to both of us, we tend to try our hardest to afford the treatment. If a treatment doesn’t seem to change Jason’s quality of life within the first few sessions we will always discuss with the practitioner but then decide for ourselves when to stop treatments. We try our best to not regret our decisions but there’s never any clear answers.

I am sure you are doing your best with recovery and we only want to share our experiences to offer options. This remains a very individual journey so please make your own decisions with care and be gentle to yourself.

Book Reviews: Norman Doidge

Norman Doidge is a Canadian Psychiatrist and the author of The Brain That Changes Itself and The Brain’s Way of Healing. His non fiction books introduced the concept of neuroplasticity to the general public and changed the way many thought of brain injuries and neurological problems.

If you ask health care professionals most either loved these books and were reinvigorated by the treatment options for those they had lost hope for, or they scoffed at these ideas of new science. I think it’s safe to say you want to be treated by the group that has hope for you and a new dedication to reading literature and research. That’s not to say each treatment Doidge discusses will work for everyone but certainly there are options available now that we didn’t know about 10 years ago. It’s exciting to have hope and to feel acknowledged by the health care community and that is what I’ve heard most often from readers of these books -they are delighted to have options. The idea that they will never improve has vanished and they are left feeling excited about recovery again.

We had the opportunity to hear Doidge speak about his second book, The Brain’s Way of Healing, and he is a very compelling speaker. I encourage everyone to google him and check out some of his interviews. In this second book he mentions two treatments specifically that relate to traumatic brain injuries – Matrix Repatterning and Dr. Kahn’s Bioflex lasers. We’re in a pretty luck position as to live 30 minutes from the founder of Matrix Repatterning and about an hour from Dr. Kahn. At this point we have pursued Matrix Repatterning and will discuss Jason’s results in the near future.

These books may not provide the same insight into symptoms or lifestyle that others I’ve reviewed do but they provide a very progressive view of the brain that I think is essential to recovery. The broad strokes are that the brain can rewire and fix itself if you provide it with the opportunity too, so your journey with TBI is never finished unless you decide it is. In each book certain treatments may seem applicable to you, others won’t but the science behind it all is compelling and deserves to be understood.

Brain Games

One of the occupational therapists Jason worked with encouraged him to check out Lumosity as a tool for working his brain at home.

There are mixed reviews from scientists about if programs such as Lumosity work at improving intelligence or if it’s just a matter of getting quicker and more efficient at their games. I have no insight other than, the OT told Jason to do it and it’s an affordable enough treatment that he continues to do it. In fact we looked into a few options for training his brain (why do a little when you can do a lot right?).

Lumosity has an app for iphone and Android. The free version has 3 games a day which has been enough for Jason’s needs/attention span. There is a paid option that unlocks more games every day but it just doesn’t seem worth it when it’s important to limit screen time etc post injury.

Elevate is set up similarly, with 3 games a day for free and more if you purchase the premium edition. Again we haven’t felt the need because the free edition has been awesome.

Lumosity games seem to focus on spatial reasoning and flexible thinking whereas Elevate has more games focusing on spelling, grammar and reading. 3 games on each every day has provided a very well rounded brain workout in our home! It’s a popular business and I’m sure there are many other companies with apps out there but these ones work for us. I think the important piece with using these tools is self regulation – if the screen time gives you headaches or other symptoms this might not be a great option for you. It’s also important not to overdo it – if you spend an hour playing on your phone that is still an hour you aren’t doing other things that may be beneficial for your care. Exercise, hands on tasks and rest are all other practical ways of helping your brain recover that should not be forgotten just because you have your phone in hand!

 

 

Talk therapy for traumatic brain injuries

This post isn’t going to take the typical treatment format because a wide variety of courses and degrees qualify others to legally provide talk therapy in Ontario. In our first year alone we dealt with psychologists, counselors, and social workers. If you are trying to have your talk therapy covered by extended health benefits it is important to find out what qualifications they will cover treatments with, ours only covers time with psychologists.

I have long been a supporter of talk therapy, I think we all need it at some point to help with different stages of life. That being said, some of the experiences we had this year made me HATE talk therapy. It had nothing to do with what was being discussed and everything to do with the people we were working with. So my number one suggestion would be – please take some time to interview your therapist before you commit to a treatment plan.

Our first round of treatments was separate sessions with psychologists just one month into our life with TBI. Because the team we worked with had very little experience with traumatic brain injuries they were not able to understand where we were coming from and ended up spending time on the wrong things. Jason, the victim of an assault that changed our life, was discharged within 3 sessions because they were certain nothing was wrong and he hadn’t been affected by the experience. The psychologist I was dealing with felt I was too invested in Jason and must be co-dependent.

The issue here is that Jason’s injuries left him with a lack of self awareness that anyone that has experience with TBI should have noticed and approached the treatments differently. If my psychologist was aware of how much care is needed in the early days of TBI they should have set me up with plans for stress relief, ways to approach conversations with Jason etc. instead of seemingly shaming me for being a caregiver. Those first experiences set us back  and delayed our ability to reach out for help again for months.

When Jason entered rehab we were delighted to be offered couples sessions with a social worker. Unfortunately the first social worker we met with was filling in and not well versed in TBI. She dismissed us 30 minutes into a session with the advice that I should get over being upset because symptoms are symptoms and this is our life now. The next session we lasted about 10 minutes because when she asked Jason to list a “stressful event” from the week he wasn’t able to….because you know, he has memory deficits post TBI!

Our third social worker was a gem. She was kind and honest and while she said we did need to learn to work with the symptoms of TBI she offered solutions. She talked through different possible outcomes from decisions we were struggling with. She advised us to have fun again. She was encouraging. Jason and I were both sad to say goodbye to her at the end of rehab and touched when she set us up with tons of groups and contacts in the community to reach out to when we felt we needed help.

I don’t relay our experiences to shame anyone. My point is, this isn’t necessarily a case of more education creating clinicians.  In our experience it came down to their experiences with traumatic brain injury and their time in their career (burnout is a very real issue that may have affected a couple of people we met). Do some research and have some conversations with the people you are thinking of hiring. Ask Brain Injury groups around you if they have anyone they recommend. Talk to other TBI survivors and see if they have anyone they’ve worked well with.  I’m including a link to this article by LifeHacker to discuss some of the steps you should take to find someone to work with.

Finally, I generally like to suggest sticking with one treatment plan until the end to see what a clinician can do for you. But I know how expensive treatments can be and I saw how negatively we were effected by our time with psychologists. So my new suggestion would be if something is striking you as wrong or dismissive of TBI it may be okay to end the sessions and search for a new clinician to work with.

Speech and Language Pathologists and TBI

We’ve long established that we received terrible doctor’s care early in Jason’s journey with TBI. We did our best to ask for some referrals from our doctor but because Jason’s symptoms were so “mild” we never thought of asking for a speech and language pathologist assessment and even then it was for some swallowing issues and not at all related to the cognitive symptoms we noticed. We were blessed with two SLP’s who were each kind and wise and opened our eyes to their importance. Even if you haven’t noticed specific speech issues please take a moment to read about our experiences and consider your situation.

Treatment type: Speech and Language Pathology

How to find: https://www.osla.on.ca/

Price: in a hospital setting covered by OHIP, private often $100-150.00 an hour. There are some funding options available here.

Credentials: Look for someone that is registered with the College of Augiologists and Speech-Language Pathologists of Ontario

What is it? From the OSLA

Often taken for granted, the ability to communicate effectively is essential to achieve and maintain quality of life. Speech, language and associated cognitive disorders can adversely affect academic performance, workforce integration, and social interaction. Treatments that speech-language pathologists are uniquely qualified to provide can help individuals with expressive and receptive language, articulation, fluency, voice, resonance and cognitive communication disorders (e.g., memory, organization, problem solving) reach their full communicative potential.

Also of concern, individuals with untreated swallowing disorders can find themselves at risk of dehydration, malnutrition, and pulmonary compromise. Speech-language pathologists are trained to provide therapies that lead to improved swallowing safety, function, and independence.

As a result, referral to speech-language pathology services ensures early identification and management of both communication and swallowing disorders, which in turn enables maximal social, academic, and vocational integration.”

Their website also has a section specifically about SLP and acquired brain injury – please take some time to read it and understand their massively underestimated skill set!

Notes from our assessment:

The first SLP Jason had the chance to meet was focused on swallowing issues he was having. He would often have trouble swallowing dense foods and occasionally vomited in his sleep which finally convinced his doctor to refer out.

This first SLP was flabbergasted that Jason had not been referred earlier in his recovery as most TBI cases with as much damage as he had are offered 2 sessions a week with a speech language pathologist for at least the first 6 months of recovery. She completed a long and thorough assessment to determine if further testing was needed. Given it was only a few foods that seemed to cause problems she elected to spend the rest of her session counselling Jason on appropriate self care post TBI.

Shortly after Jason was accepted to Toronto Rehab and had the chance to work with an SLP once a week. We were delighted to learn that even though we hadn’t noticed any issues with pronouncing words there was still work to be done. Jason spent most of his sessions working on strategies for word recall (an issue he often struggled with but no one cared about until then). He was given work sheets to complete at home for grammar and focusing on words. He and his SLP and a student practiced carrying on “meetings” and worked on strategies to help him make notes while also participating in the meeting. Have you ever thought about how glorious our brains are that they can take in information, create our own opinion, voice that opinion and still remember what was said before we spoke? It’s amazing and takes work and practice and this SLP allowed him time to work on these skills without the pressure of being fired at work.

Jason was tasked with creating a power point presentation similar to something he would create at work and then presented to his team. His SLP provided feedback on the experience, word choice, how to find his place in a presentation if he got off track.

I’m still in awe of these professionals that have so many skills and solutions to help their clients reestablish their communication skills. I’m grateful for the time Jason spent with them and the many bits of knowledge they shared with us.

Traumatic Brain Injury and Occupational Therapy

In March 2015 we were lucky enough to meet a private occupational therapist from our hometown that has significant history working with traumatic brain injuries and Jason worked with her for about a month. Then he was admitted to Toronto Rehab and was able to work with another occupational therapist there. They are both stunningly intelligent women with so much compassion for the people they work with. We count ourselves  very lucky to have met each of them. Here is our summary of Jason’s experiences with occupational therapy post TBI:

Treatment type: Occupational Therapy

How to find: http://www.caot.ca/index.asp : http://www.coto.org/default.asp

Price: in a hospital setting covered by OHIP, private often $120-160.00 an hour

Credentials: Look for someone that is registered with the College of Occupational Therapists

What is it? From the College of Occupational Therapists of Ontario “Occupational therapists (OTs) are health care professionals who help people learn or re-learn to manage the every day activities that are important to them, including caring for themselves or others, caring for their home, participating in paid and unpaid work and leisure activities. The people occupational therapists work with may be having difficulties because of an accident, disability, disease, emotional or developmental problem or change related to the normal aging process.”

Notes from our assessment:

In the private setting Tracy Milner assessed Jason using the BrainFX 360 tool which was the first real assessment Jason had in his recovery. She spent time explaining her results to us and our families and started working with Jason on sleep hygiene, a lot of the ideas we discussed last month came from her advice and materials she suggested. She worked with both of us on how to set up our home and schedule to make communication easier and later this year I’ll be writing about some of the designs we’ve used to create a command center in our house.

She put together a modified work program for Jason’s employer and met with them to explain what Jason’s limitations were and how they were affecting his work as well as she offered solutions that were workable for his management team. This alone was worth millions because recruiting Jason’s manager to be on our team and fighting for Jaosn was so important and there is a glaring lack of information out there for employers of those with traumatic brain injuries.

Tracy had plans to start working on cognitive skills such as planning Jason’s work days and project management but at that time he was admitted to Toronto Rehab and it was a program we couldn’t refuse.

In the hospital setting I think Jason was at an advantage because he already had an understanding of his limitations and lifestyle changes thanks to his time with Tracy. His OT at the rehab program was able to jump right in to tasks tailored to his goal of returning to work full time. Where we were only able to afford to meet with Tracy every 1-2 weeks rehab was offering OT sessions two times a week. The activities included things like: a treasure hunt of sending emails, making phone calls, checking in at locations around the hospital that let me work on goal setting and prioritization, building a motor and discussing energy conservation.

Our experiences

In this blog we seek to share our experiences with brain injury treatments in Ontario, Canada. The next few days we will be exploring some of the traditional treatments we have taken advantage of. We will do our best to share cost, treatment options and some websites to find a credible practitioner in Ontario. If you are in another province or country it is ESSENTIAL you explore the regulations and regulatory bodies in your area to find someone that can help you. If you have extended health benefits that you are trying to use it never hurts to call your insurance company to ask if they have practitioners they recommend or certain degrees or programs they will compensate you for ( example: our benefits cover treatments from psychologists but not counselors/social workers/therapists etc).