How we make life routines

As much as possible we try to organize our life into themes of the day. Mondays I try to stay home and organize, clean and be with my husband. Wednesdays we try to schedule Jason’s rehab appointments and have errands. We know by Thursday most weeks we need a quiet night at home. Sundays are for church and rest and planning how to make life work for the next week. For us, none of this is set in stone but more often than not that’s how the week plays out. We have our sleep routine as outlined previously which adds extra structure to our week to keep us on track.

On Sundays we sit down and try to list everything Jason has, or has to do, in the upcoming week and then build those items into his week.  This exercise is crucial for allowing Jason to work on initiation, motivation, memory, time management, problem solving…all those executive functions that have been impacted by the brain injury and that he needs to strengthen for a return to work.

Now my caregiver confession is, I actually really suck at this process. It would be SO much easier to just make the plan myself. This is the time, every week, that I have to remind myself of our family goals, that we want Jason to be able to return to work and we want him to get as much practice as possible at building these skills.

In a stroke of genius, Pinterest threw this beautiful link (http://www.dosmallthingswithlove.com/2015/04/husband-and-wife-meeting-printable-agenda.html)  up at me a few weeks ago and based on a few weeks of practice it has transformed our Sunday night planning session for me. Sunday nights are now not about sitting and helping my husband recover from brain injury, but about appreciating each other, communicating and getting on the same page. It might seem silly to some, but for me this outline has really changed how I approach our life routines.

Everything laid out for our Sunday night meetings – just missing the big mugs of tea that usually accompany us.

How to live when brain injury is a factor

Bold claim for the title, but really my blog post can probably be summarized with one sentence: it’s different for everyone.

We were told repeatedly that routine and lists and organization need to become priorities in our life to minimize the work Jason’s brain is doing just to get through each day. And so we’ve spent the last two years trying to refine and adapt our routines and coping mechanisms to make life easy. We aren’t the best at it, and despite the fact that I actually love routine I’ve learned it’s really hard to enforce when you also want to feel like you have a full life.

  1. Life routine. In general, I do not set us up for success in general routine. My work as a massage therapist and as a Norwex sales rep does not have the same schedule week to week and so my ability to help out around the house changes. I have, at various times, considered trying to find an office job or retail with set hours, just to make our life a bit more predictable but frankly my job and coworkers are often one of the things that keep me sane and happy.
  2. Lists. Lists are great. I am a super list maker. I can have lists on the fridge and in my dayplanner and my phone and the car. I make a ton of lists. But do they make sense to Jason? Is my writing even legible? Is he even checking them? Lists are only a great tool if you use them after making them, which is sometimes a challenge. One of our goals for 2017 is to work on using lists more efficiently.
  3. Meals. Despite always being a meal planner, meals are an area we have struggled quite a bit since the brain injury. The exhaustion and frustration that controlled much of our life early in this journey meant that by dinner time we had no ability to cook. Even as we started to get more disciplined with sleep and routine, my grocery list making or shopping often left us scrambling when we didn’t have the right ingredients. We’ve since found a pretty good solution that I’ll discuss in another post.
  4. Relationship. Brain injury stole a lot of our newlywed memories and experiences. We’ve had to rework how we live out our marriage so that it a)helps us both feel loved and b) doesn’t take all of Jason’s energy.

Over the next month or so I’m going to go into each of these topics in a bit more depth to explain what systems we use that seem to help us live out routine. Nothing is new or amazing, I basically just explore pinterest for hours to see what other people do, then try it at home and adapt it 8467 times as needed. My hope is that with this mini series of posts we will be able to help anyone see that a) Brain injuries may require life long problem solving and energy conservation, b) provide examples of systems that may work for others or may spark ideas for others. Every brain injury is different, every family is different so what works for us today, may not work for us in a few months let alone for a family with different challenges.

Our Home – the app that helps

As I start to get back into writing I have a whole folder on my computer of articles I want to share and discuss and studies that are being published. Today though I want to start with discussing an app we found just before Christmas that has been a huge help.

We’ve discussed previously how post TBI initiation and memory can prove challenging and for a long time I felt like Jason’s mother constantly advising him on what he needed to do each day and when. It does not make for a good relationship when one is always in control and neither of us loved the arrangement. We have various lists and routines around the house that took some of the burden off of me, but weird one off tasks or phone calls were still falling through the cracks regularly. We needed something we could both access, when we were at home AND away from home and that we would both use. It’s a pretty tall order.

OurHome is an app that is free to download on itunes and Google Play and allows members of a household to share to do lists and grocery lists. I know there are tons of apps out there that sound similar but this one has the unique feature of awarding points (determined by you) for tasks and then those points can be redeemed for points (again, determined by you).

OurHome met our needs.

  1. We both needed to be able to access it, at home and away from home. This one is pretty obvious – download the app to each of your phones. Take your phone with you when you leave the house. OurHome allows you to set up a family account and you can each add tasks to each others lists, put in due dates and assign points. The app seems to automatically assign points in relation to the time it should take to complete the task but this can be changed to make important tasks more valuable. Being able to access  the app anytime and anywhere has meant fewer tasks get forgotten. We’ve all had that moment where you are at the gym and suddenly remember you need to take meat out for dinner right? Now I can actually write that down quickly and it actually happens when I get home.
  2. We needed to use the app. Here’s  the issue with pretty much any coping strategy that is suggested to those with TBI’s. They only work as well as you make them. Lists, phone alarms, pneumonic devices – they may all help but you need to do the work to use them. When Jason is already tired and struggling with cognitive skills he often won’t remember that he needs to check the list or he’ll swipe away his phone alarm without changing tasks. The possibility for these limitations is still there with OurHome but the incentive of having points and rewards really minimizes how often things are forgotten. As a family you set up your own rewards, for us things like getting a new tea or a no alarm day are extremely valuable and so take more points to achieve.
  3. We wanted to feel like a couple of adults again. It’s very hard to feel like one partner is the parent and one is a child in day to day life. When I presented this app to some other TBI families they brought up the fact that it would seem condescending to bribe your husband to do chores. I have to say, that is not the dynamic in our relationship and it probably has everything to do with how you approach the app as a family. Jason and I both use the app, we both have the ability to add and remove tasks and determine our own rewards. Rather than feeling like a manipulative tool it feels like a good way to keep our life on track and get some well deserved me-time/tea/treats/fun activities.

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.

Osteopathic manual treatments for brain injuries

Treatment type: Osteopathy

How to find: http://osteopathyontario.org/

Price: In Ontario often $90.00-150.00 an hour

Credentials: Look for someone registered with the Ontario Association of Osteopathic Manual Practitioners, they will have a designation like these:  D.O. (Diploma in Osteopathy) D.O.M.P., DOMTP,  BSc(Hons), BOst, or MOst

What is it? From the OAO

“Osteopathic Manual Practitioners maintain, improve or restore the normal physiological function of interrelated body structures and systems, and, enhance the body’s natural ability to heal itself. They use various manual assessment and treatment techniques and modalities to help people of all ages  and backgrounds, who suffer injury, pain or other health concerns, by easing pain, reducing swelling, improving tissue mobility and promoting efficient healing.”

Notes from our treatment:

Osteopathy was the first intervention Jason used and we had fabulous results. That being said another friend with post concussion syndrome found his symptoms exacerbated by one of the osteopaths we saw and relieved by a second. Again, you need to trust your body and your symptoms to decide if this is something you need to incorporate.

Jason found most of his osteopathic treatments to be gentle enough that he could sleep during his time on the table -often followed by a 12-14 hour sleep at home! As we’ve mentioned sleep is an extremely important part of recovery from TBI and post concussion syndrome so this a very happy result of osteopathic treatments.

Treatments seemed to revolve around lowering Jason’s stress levels and working on endocranial spasms which are present post injury. The first and only times we heard of endocranial spasms was with Jason’s osteopath and I have yet to find a good resource for explaining this phenomenon in laymen’s terms. My understanding is that it is quite literally a spasm in the brain due to trauma and osteopath’s are able to help release it. Other treatment goals included working to relieve tension through Jason’s back and whole body alignment.

Because the treatments were gentle and resulted in measurable changes in Jason’s sleep and alignment osteopathy became a very important part of his recovery. One of the osteopath’s we worked with was Ryan Richardson in Newmarket who has extensive history researching concussions and post concussion syndrome – I encourage everyone to check out his qualifications and abstract listed here: http://www.youroptimalhealth.ca/concussions.

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.

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.

Traumatic Brain Injuries and Neuropsychological Testing

Neuropsychological testing was performed on Jason at Toronto Rehab. From what we understand this is an assessment only done for those in the program that are planning on returning to work or school. As we mentioned in our posts on Brain FX, some of the results overlapped but it seemed to our uneducated perspective that they did cover different skills and situations at times.

Treatment type: Neuropsychological testing

How to find: Referrals from your doctor or specialist, https://members.cpo.on.ca/public_register/new and select Neuropsychology as the category you are searching

Price: in a hospital setting covered by OHIP, private often above $200.00 an hour as far as I can find

Credentials: Look for someone that is registered with the College of Psychologists of Ontario, with Clinical Neuropsychology as an area of practice

What is it? Neuropsychological assessment is a performance-based method to assess cognitive functioning. This method is used to examine the cognitive consequences of brain damage, brain disease, and severe mental illness.

Notes from our assessment:

This testing was done in two 1.5-2 hour sessions but can be implemented in a variety of time frames, I’ve heard of some people paying for 8 hours of testing to have data for lawsuits etc. Jason said most of the testing was intriguing and task/game based. He had to find patterns, remember words and lists, navigate games without knowing rules based only on the response from the neuropsychometrist who gives the testing.

After each appointment he was EXHAUSTED. To be fair, just hearing about the tasks he had to do made my brain tired so it certainly is not easy testing. The neuropsychologist met with me to go through symptoms and provided Jason and I questionnaires on his symptoms and self awareness and all of this information was combined with the testing data to give us a thorough report on Jason’s strengths and limitations post injury.

The testing is done in a quiet room, one on one, with no distractions. The neuropsychologist and neuropsychometrist made it very clear to us that these results are only indicative of how Jason is able to navigate these tasks to in this specific environment. If you pursue testing I think that is a really important piece to keep in mind, real life (especially most workplaces) is rarely uninterrupted or calm and those confounding factors can change how one is able to think in those environments. Nonetheless it is a thorough report and helpful to keep in his file and in our minds as Jason prepares to navigate the return to work.

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.