I have been rather remiss, again, in my posting duties, but I will catch up with this one!
I asked my family to change our Christmas tradition this year. Normally, we would have given thanks for family, health and food, then popped the Christmas crackers and dug into the food. This year I asked them, at brunch a few hours before our turkey dinner, to try something different. I gave them the theme and time to think about it, but not too much, so it would be authentic.
At dinner, we shared what we were thankful for and an achievement; a milestone for which we each were proud. My modest and shy family members rose to the occasion, in spades. There were a few quivering chins, some denials that they ‘really hadn’t done anything special’, and a general discomfort with feeling proud of themselves and saying it out loud (oh we, the modest and understated Canadians!). Milestone ages (90!), living away from home for several months, a first job, surviving a major move, and managing a health issue, were applauded enthusiastically by all of us. Mine was that I was pronounced ‘cured’ by my oncologist at my five-year visit. It was a year of challenges experienced, and met, with courage and hope. Bravo, family!
On the road to recovery: Occupational Therapy
In the fall of 2016, we spoke with someone who had a concussion resulting from a motor vehicle accident and, as often happens when you meet a fellow traveller in a medical journey, we shared the various treatment protocols we had tried. She recommended an occupational therapist (OT) who worked with concussion patients and who was also a certified yoga teacher. She had great results from the OT treatments and credited her as one of the best investments in recovery she had made. I did the initial research into it and contacted the therapist for more information, but Hugh decided to put it on hold for a bit.
We have mentioned before that, in our experience of the medical and complimentary health systems for people experiencing concussions, there are so many conventional and unconventional treatments to try that it is difficult to decide where to put your time and money. There is no clear path to follow; no navigator to direct you to the best treatment. You learn you have to choose what makes sense for your financial situation, your understanding of the benefits of the treatment and your physical energy for appointments and treatments.
By early January 2017, Hugh’s progress was levelling off and we knew, if he was going to return to a normal work schedule, he needed to try some other options for rehabilitation. He was still doing neurofeedback at the local clinic, he was lasering almost daily and he was doing his vision therapy exercises at home, but it became apparent that Hugh wasn’t ready to work, even part of a day. The binocular vision in-clinic therapy sessions weren’t to start until the spring. He was still very fatigued after a few hours in daylight, he couldn’t drive for more than about 10 minutes at a time, his ability to work on the computer was nowhere near equivalent to a full work day, and he couldn’t read print for more than about 5 minutes. Our insurance providers were not giving any direction on treatment and, although we could still be covered by them for another eighteen months, we knew they would be agitating to get him back to work, whether he was ready or not. So, Hugh decided to try out occupational therapy.
Occupational therapists provide functional therapy to people who are experiencing challenges due to physical injuries or chronic conditions, whether they were present at birth or acquired throughout their lifetime, and mental health challenges. They help clients either adjust to, or overcome, their challenges in their homes, workplaces and communities.
Here is a link to the occupational therapist we talked to in our area:
We know there are such services available in many places, so if you are interested in pursuing this line of inquiry, we suggest asking your health care provider or looking for an accredited occupational therapy provider through the College of Occupational Therapists in your region or country. Here is a link to Ontario’s College:
We saw the OT for the first time in late January 2017. She discussed the services she could provide, which included some functional assessments of Hugh’s skills, recommendations for accommodations at home and Hugh’s workplace to reduce his cognitive load and energy, and recommendations for other services and providers that might be helpful. Most importantly, she advocated on our behalf with the insurance company for the costly physiotherapy/vestibular treatments as a means to accelerate Hugh’s return to work and they paid for it, and her services. Needless to say, and for different reasons, both Hugh and the insurance company were eager to get him back to work. We are planning to discuss the subject of insurance provision and how to advocate for services in a later post, but many of you will know they are decidedly reluctant to pay out for services, unless they have had positive experience with them in the past and can see an immediate pay-off.
The OT did her intake assessment, including a neurological screen called the Montreal Cognitive Assessment (MoCA). You may have heard about it in the news recently, in relation to a certain world leader. The MoCA is commonly used to assess neurological and cognitive impairment. I had it done by the neurologist I saw in 2015 after my concussion, when I was under a great deal of stress because of Hugh’s accident and the work load I was responsible for when he was unable to do virtually anything. My score was low and I got a little more stressed. The neurologist did some other tests and then re-tested me and it was much better.
Just a word from personal experience: if you are somehow able to access a free version of this screening tool online, and you try it, don’t panic if your score is lower than you expected. Remember there are many factors that affect your performance on cognitive tests on a given day. It is just a ‘snapshot’ of your skills at the time. If you have any concerns about it, though, definitely talk to your health care provider.
The occupational therapist was instrumental in Hugh’s return to work. She knew about the binocular vision therapy, including the neurological optometrist Hugh was working with, and seen its benefits for many of her patients. She was linked professionally with the local vestibular rehabilitation therapy clinic whose primary caseload are concussion patients. She gave him exercises and set weekly goals for Hugh to achieve. These included increasing his driving stamina, increasing his time on the computer, reading print materials with an adjusted font, and strategies for learning to adjust to background noises in a normal work environment. She gave suggestions about taking breaks and things Hugh could do to rest his brain every hour. She recommended tools like low glare sunglasses and a noise-cancelling headset that made it easier for him to live and work in the noisy, stimulating environments of his work place and our home. She also provided recommendations on how to set up the desk environment, such as chair and computer terminals positions, and software to reduce the cognitive load. She also gave suggestions for sleep positioning in order to optimize sleep – something critical for surviving the work environment.
One helpful and long-lasting service she offered was information on yoga and mindfulness. She runs yoga classes that are specifically tailored to the needs of concussion patients. Beyond the benefits of yoga, this class served as a social support group for Hugh, as he took the class with other concussion patients. They could commiserate together about their various issues of day-to-day living with post concussion syndrome. Concussion patients often feel very isolated because they can’t participate in social activities at work or at home, because it is too taxing for them. Few people really understand how broadly a concussion affects your ‘personhood’. It also gave him perspective, because he met several people whose lives were far more altered and disabled than his.
She started Hugh on a yoga and meditation routine that he practices daily, now, that is helping with so many other cognitive and emotional issues resulting from, and exacerbated by, his concussion. He is dealing with stress better, in all parts of his life, including work.
Return to Work
In early November 2017, we marked two years since Hugh stopped work after his concussion and began his long-term disability. Several days after the second anniversary of his first doctor’s appointment after the concussion, he returned to full-time hours at his work place. That was Hugh’s ‘achievement moment’ at Christmas. Since July 2017, he had been transitioning back to work, a few hours at a time. As each hour, or day, of work was added on, he would have a couple of days and weekends of fatigue until his energy and stamina built up. With the advice of his occupational therapist, his work place has put some accommodations in place to reduce his cognitive load. He drives on off-peak hours and works from home two days a week, most weeks. He is enjoying reconnecting with his colleagues and resuming his work projects. It has been a successful transition, for the most part. He has learned a lot about letting go of things he can’t control or things that are not his responsibility. He is still learning to pace himself, so he doesn’t become over tired, but all these are good life skills for any situation.
New Year, New Horizons
In this post, we touched briefly on both vestibular rehabilitation therapy and yoga/mindfulness practices. We will post separately about the benefits of both those treatment modalities for concussion survivors soon.
We hope all who are following our journey had a peaceful and healthy holiday season and great start to 2018. We wish you all well.