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.

10 Ways YOU Can Help!

Uncomfortable with “feelings” talk? We’ve all been there. It doesn’t mean you need to feel (or act) like a jerk. Here’s 10 practical ways you can help a friend or family member with TBI. Seriously, anyone that did any of these in our first year was considered a super hero in my mind. Amy Zellmer has done a great job of explaining why these actions would be appreciated and when they are helpful to implement so read mindfully and then enjoy being someone’s superhero!

9 Things NOT to Say to Someone with a TBI

This is not my list but actually an article that started on brainline.org and has been shared with me by tons of friends and family wondering how accurate it is.

Have a peek at the 9 Things NOT to Say to Someone with a TBI.

The author of this article has done an exceptional job at outlining the worst statements we heard in Jason’s first year of life with a TBI. I highly encourage everyone to read this article and file it away in your brain for use around your loved ones.

 

What are executive functions?

I’ve gotten cocky lately. We have names for symptoms. We know what to expect on hard days and make modifications to limit hard days altogether. Jason isn’t working while he’s recovering. He has enough easier days to help me out around the house – suddenly over the last couple of months everything hasn’t been on me. It’s been lovely and I’ve gotten cocky.

And then it comes up again, and is in our face and reminding us that we’re still SO early in the recovery process. Pretty much without fail the symptoms that pop up are executive functions. And since I know I’ve written that term about 80000 times in the last year, I wanted to be sure to clarify what that means. Fortunately there are some very intelligent people over at Understood.org that made a beautiful infographic relating executive functions to kids. 

 

KeyExecutiveFunctions

I was delighted to find this page and near the bottom there are links to learn more about some skills and how to help. It’s been a huge part of shaping my approach to conversations with Jason and reminding me that certain situations are still just symptoms – not my husband choosing to be difficult.

 

How much can you trust health care?

This is a personal post for me. As a registered massage therapist in Ontario I count myself among regulated health professionals and I like to think we are an ethical and intelligent group.

As a wife navigating traumatic brain injury recovery I have been frustrated and disappointed by health care professionals again and again.

So here’s my thoughts – there are a lot of great health care professionals out there. There is a lot of new research and understanding about traumatic brain injuries and post concussion syndrome out there. Not every health care professional has an understanding of traumatic brain injuries and even those that claim to understand it may be working with outdated data (for example the old concept of “the brain only recovers for 1 year post injury” vs. the emerging data about neuroplasticity).

When you work with someone you need to trust them. Be honest about symptoms, be honest about what is within your ability to do and afford for treatments. And then you need to trust yourself to make the decision to switch treatments if something isn’t sitting right.

When a doctor called Jason a wimp for having symptoms 7 months post treatment? We left. When a naturopathic doctor suggested I should just look on the bright side and stop worrying about the severity of his symptoms? Fired. A personal trainer that wasn’t concerned her workouts were sending Jason back to bed for 2-3 hours? Gone.

But we found replacements for each of those important parts of Jason’s recovery that are more well versed in TBI. It might be more expensive paying first appointment fees again and again, but the financial cost is nothing compared to the successes he’s had with his new team and their ability to assess changes in his symptoms well. I encourage you to do the legwork to find a team that is great as often as possible and don’t let words from uninformed practitioners, even when they have all the credentials in the world, discourage you during your recovery.

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).