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.

A break for the Emmy’s

This post is coming a bit late to the game but a few months ago I wrote a post mentioning Tracy Morgan’s traumatic brain injury and I can’t help but follow up now.

Last week Tracy returned to the stage as a presenter at the Emmy’s and was received with a standing ovation by all. It was beautiful and his speech seemed honest and thoughtful and sprinkled with just enough jokes to keep me from getting weepy. If you haven’t seen it yet, please check it out.

It’s so exciting to see survivors returning to their life, or stealing a few minutes with friends to remember the good things they have to live for. But even more exciting to me was to see all those colleagues excited for Tracy and honouring his journey over the last 15 months. Imagine how much good we could do for TBI survivors if we started greeting them with cheers and friendship instead of frustration that they aren’t further in their recovery faster? Imagine how we could affect our loved ones if we honoured each step they take as a triumph? It was a beautiful moment for me and a good reminder to be supportive of my husband and friends as they navigate their new normals.

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).

Brain FX: The wife’s perspective

Jason spoke the other day about his assessment from BrainFX and we hope to feature some information from the creators in the near future (she’s pretty busy since she also works as an OT!).

Obviously I did not have the chance to work with the software or the assessment. I did have a chance to chat with  Tracy Milner, one of the creators (also Jason’s private OT) and sat in on one of their webinars for health professionals. Approximately a third of my massage therapy clientele are suffering from traumatic brain injuries and post concussion syndrome so having a deeper understanding of resources out there is always a good thing. This was another case, similar to our eperiences with behavioural optometry, where we are so very lucky to have the connections we have and that Tracy Milner is a friend of our doctor.

So here is my review:

Treatment type: Actually an assessment, BrainFX

How to find: www.brainfx.com

Price: $300-500.00 (estimated)

Credentials: Use the Find An Administrator tab on their website

What is it? From their website “BrainFx 360 was created to measure cognitive (thinking skills), mood, social, behavioural, fine motor and balance effects through self-report, collateral report, and standardized performance testing, through real-life skills and game-like activities for people who are age 10 and up. “

Notes from our assessment:

This was really our first chance to have Jason assessed by someone that knew what they were doing (see our posts on doctors for more on that story). Tracy sat with Jason while he completed about 3 hours of testing on the tablet, I heard bits of her instructions as I worked and was impressed by how succinctly she explained the tasks and encouraged Jason throughout.

Post assessment Jason was exhausted to the point of experiencing a panic attack while trying to cook dinner. There were a lot of tears about how tiring the assessment was and how really truly unfortunate it was that this was our life 6 months into marriage. We didn’t know enough about what we were dealing with to make some good decisions about energy conservation that night. To anyone getting this assessment I would recommend not working before the assessment and planning to rest for the rest of the day or at least not having anything that HAS to be done.

BrainFX 360 includes the option for 3 people to answer questions and submit their views on the subject’s symptoms and behaviours post TBI. I was able to complete the survey for Jason (along with 2 others that saw him frequently during the first 6 months) and was excited to finally be able to give my opinions and have my chance to talk about what we were living with. All the input from those surveys is included in the final report.

A week later we were able to sit down again with Tracy and review the results of the assessment. She brought a beautiful document that compared Jason’s results to averages and clearly highlighted areas of difficulty and areas of success. This was the first time we had concrete data showing the difficulties Jason was living with and having them laid out for us allowed us to start planning how to make life work.

A month later Jason was invited to Toronto Rehab for an assessment. We were very happy to have the BrainFX 360 to show and the physiatrist we met with was amazed by how easy the report was to read. He spoke of other patients he met that spent thousands on assessments only to be given reports that were unclear and unreadable by other professionals. Brain FX 360 uses language and terms that are standard in TBI medical care and is easily understood by everyone we’ve worked with. In each case (including Tracy) health professionals have been able to read the reports and estimate where the bleeds were based on Jason’s symptoms.

The first two weeks of Toronto Rehab were assessments  – in total I think Jason spent about 13 hours doing assessments with various professionals. Often at the end of the day he would explain the assessments starting with “It’s like what I did on Tracy’s but like this….”. At the end of the two weeks we had the opportunity to review the results and build a treatment plan with the team and pretty much without fail the results of these long tests mimicked the results of BrainFX 360.

I am not trying to be so arrogant as to claim to have understood all the tests or to know if EVERY test could be supplemented by BrainFX 360. I am sure there are reasons people use the tests they do and I am grateful that we have SO much documentation about Jason’s abilities and challenges. But for those of you that don’t have the ability to attend a rehab program or have felt lost without some solid assessments – BrainFX may be the company you need to contact. I’m attaching a brochure from their website and I strongly encourage exploring their website and contacting their administrators to find out if they can help you.

BrainFxbrochure

BrainFX 360 – My Experience

The BrainFX 360 assessment wore me out.  Don’t get me wrong, I really enjoyed completing the assessment and found it really interesting to complete but it was an exhaustive test.  The test may not be this exhaustive for most but at the time I was working full time (which I shouldn’t have been) and trying to recover from a TBI.  The whole concept of this program is well ahead of traditional testing completed by Occupational Therapists.  In a couple of hours I was given results that validated the symptoms I was feeling and provided specific areas of recovery for Tracy (my OT) to focus on.  This was HUGE!  At this point I was struggling at work and constantly exhausted; the results from the BrainFX 360 assessment provided a glimpse at the symptoms that were causing these issues.

The entire assessment is completed on a tablet and you are occasionally provided with a keyboard and/or some headphones.  There are puzzles questions, and some small game-like section, each meant to test a specific area of you cognitive function or abilities.  Part of the fun for me was attempting to guess what was being assessed as I completed each of the tasks.  After the assessment is complete Tracy went over some of the results with me immediately but a comprehensive report followed on my next appointment which hit the nail on the head when compared to how I was feeling.

Looking back on the testing after seeing another OT through a rehabilitation program I can definitely see the advantages to BrainFX360.  Although I was exhausted the day I completed this testing, the standard paper/pen testing takes more time and energy and the results are less comprehensive.  This testing saved Tracy and I several hours over several days of testing which can be a toll on both energy levels and my wallet.

I am lucky to have had this testing and if you are lost figuring out your symptoms I’d recommend checking out BrainFX 360.

Essential oils and traumatic brain injury

As I’ve mentioned because of our crappy medical help early on in Jason’s recovery we sought treatments outside of the conventional medical fields. One of those options for daily help was aromatherapy, a concept I hadn’t really bought into before Jason’s injury. I ended up signing up with Young Living essential oils because I knew people that swore by them and I liked that I could order online (worst sales pitch for Young Living ever I am sure!) but really they have been great for us.

Articles like these helped convince us to give some a try:

http://livingtraditionally.com/essential-oils-and-brain-injuries-what-you-are-not-being-told/

http://aromatherapydoctor.com/2014/02/dr-anne-meyers-protocol-for-grant-virgin-traumatic-brain-injury-2012/

http://vividandbrave.com/how-essential-oils-helped-me-cope-with-my-traumatic-brain-injury/

Now I am not an aromatherapist, so I would hesitate to call what we did aromatherapy. We just used essential oils, based on articles and other people’s experiences to help with this time in our life. They were affordable and at least gave me the feeling that I was helping somehow. We chose a few ways to use essential oils in our life like:

-A blend of orange, lavender and cedarwood in our bedroom at night

-A blend of rosemary, vetiver and frankincense in Jason’s office and handcream when he’s working

-Spot treatments with frankincense and peace and calming during cognitive overload times to help with anxiety and stress. We also used Bach Flowers Rescue Remedy during high stress times with much success. Jason doesn’t really buy into natural options so it’s always pretty entertaining to watch him calm down after using them and then get a bit annoyed by their validity.

Kids of TBI

When Jason switched to his new family physician one of the first things she said was that there was no way we could have children while he was in such an early recovery phase. As frustrating as it is to be told what we are allowed to do as adults I recognize the wisdom of this advice. I can only imagine how exhausted parents must feel when dealing with a spouse with TBI and children. I struggle to balance our life and we have no children and I control my own work schedule! There are some parents out there doing some amazing things. Recently a few posts about how to cope as a child in this situation have come across my desk and I wanted to share for those that find themselves in this position.

This beautiful letter was posted on Brainline by Janna Layde to kids like her with a parent with TBI.

Seven Truths – the ripple effect of TBI lists some of the realities that parents need to be aware of.

 

Teaching those with traumatic brain injuries

Sticking with this week’s theme of things I know nothing about….my heart goes out to those teachers that are going to have their life touched by traumatic brain injury in their kids this year. I think it’s really important that teachers are given information from parents about how their child shows fatigue and symptoms and what accommodations might work for them or have worked in the past. I know nothing about being a teacher but I was pleasantly surprised to find quite a few resources. Here are some of the best I looked at,

A Fact Sheet for School Professionals

Classroom Interventions

The Transition from Hospital to Community

Reintegration of Students with Traumatic Brain Injury

TBI and public school

Watching Jason live with a traumatic brain injury has been saddening and he has the ability to understand what is going on most of the time. I can’t imagine being a parent supporting a child with a brain injury. As such, as with yesterday’s post I won’t try to imagine what would be good advice but provide some references to help guide the start of school for you.

Make sure you understand the requirement for rest.

Check out the Parents’ Guide listed on Brainline. They’ve also posted this great video with ideas for making school more manageable.

Make sure you have an understanding of the varied symptoms that can occur so you can find help early.

Learn to advocate for your child! They are going to need your help more than ever.