Triggered

Sooke biking
Galloping Goose Rail Trail – Near Sooke BC

A recent incident reminded me that, since my injury, dealing with traffic carries the risk of seriously changing the trajectory of my day.

Being in a car

Since my injury I have increased my endurance riding in or driving a car from a half hour to an hour without needing a break. At times I’ve managed over two hours without a break.

I’ve also improved my recovery time following a car trip from needing three or four days to recovering in as short as a couple hours.

Having done trips, some of a couple hours and some approaching five hours over the last four years I’ve had opportunities to fine tune the drive to help me arrive at my destination in relatively good shape. Well, let’s say most of the time.

When I’m not in a car

What is much less predictable for me are traffic situations when I’m a pedestrian. These are fortunately few and far between. However, when they do happen they have a significant effect on me.

I recently dealt with such an incident. Prior to my injury I might not have even noticed anything or forgotten about it a short time later.

I had just crossed a major intersection while on a morning walk. It was the morning rush hour. Suddenly I was aware of a sound of tires of a car out of control. It was not very loud but a definite change from the hum and cadence of the busy commuter traffic.

I noticed my body suddenly tense up. I was expecting a follow up sound, that would have mimicked the sequence of the accident that caused my ABI. There was no follow up sound other then a quieter repeat of the ‘out of control tire’ sound.

Next thing I knew I was in tears. Both the noise and my reaction to it took me by surprise. This kind of situation and response hadn’t happened in a long time.

What helped to reduce the stress of the situation was being aware of trigger events when living with post traumatic symptomology.

Direct consequences

I continued my morning walk, though I was in a hyper vigilant mode while there was traffic nearby. This was even more apparent at each busy intersections. I found myself in tears off and on for the next couple hours. The slightest change as I walked would set me back.

I continued my walk since physical activity that has a simple rhythm to it along with low cognitive input I find helpful for recovery. (I find cycling the most helpful but I had no bicycle available. The pedaling action creates a more controlled rhythm than walking.)

Longer term effects

As long as I was walking I was doing reasonably well. But I couldn’t keep walking all day. I returned to my lodging place after walking 11 kilometers.

For the rest of the day I was dealing with neural fatigue. I had a short nap after my walk. That did not improve my condition by much.

As the day progressed I was dealing with a low grade headache. In itself not too hard to manage. It was the type of headache that I’ve come to recognize as minor brain swelling.

I found myself operating in a non-verbal mode most of the day. Talking required too much energy. I needed to conserve my energy to simply get me through the day. By early evening and a second nap I had enough energy to talk.

After my morning walk I took a shower. The sensation of the water, particularly on my head was very difficult to handle. It was a clear indication that I was dealing with sensory overload.

Traveling Challenge

Dealing with ABI related effects while traveling makes recovery more difficult. The disruption of routines and a loss of familiar places means I need to be more cognizant of what is happening around me.

I’m glad I wasn’t asked to give input on the plans for the day. That takes too much thinking – too much neural activity. I was fine with simply going along with what was being planned or kindly opting out. I went along for the car ride which went fine. The ride was under an hour so that helped.

I joined in for a couple hikes. That was good but I needed to set my own pace. It takes too much neural energy to match my pace with others.

I opted out of swimming. The sensory loading of dealing with water was out of the question. The fact that the swimming area was fed by a mountain stream would compound the sensory loading.

Evening of the first day

Late afternoon I had a second short nap. After supper my level of fatigue had improved. Conversation was easier and therefore more enjoyable.

My sleeping pattern had been working very well for me for the past number of weeks. That night things did not work out. Well past midnight sleep still seemed a long way off.

Sense of humor

When I looked back on the day I realized I had room for some humor. Just before starting the hike near the mountain stream a couple visitors at the park stopped me to ask about wildlife. They wanted to know where they could see some wildlife. I mentioned that there was a warning sign at the park entrance that there was a bear in the area.

The visitors wanted to see the bear and wondered how to call it. I suggested calling the bear “Freddy”.

My Recovery Strategies:

– Lie low for a day or two.

– Maintain my basic daily routine.

– Stay physically active.

– Eat or snack regularly – build up energy level

– Minimize decision making.

– Minimize cognitive activity.

– Spend time outdoors in a natural environment away from city noises

– Journal about the incident (I choose to do mine in the form of a blog posting.)

Over time I have added to my list of strategies.

Day Two

After being wide awake till the wee hours of the morning I was pleased to have slept a couple hours later than usual. That was helpful. I noticed a significant improvement in my energy level.

I not long into the day I noticed that I was still emotionally quite vulnerable.

The plan for the day was to going biking with the two of us. Bikes were rented and we headed out. My goal was to get about 40 or 50 km in. I didn’t want the ride to be too short since I find cycling helps to clear my sensory loading.

It was a cool and breezy day. We had decided on following a rail trail bike path. The bike path being well away from traffic most of the time, proved to be a good choice. By the time we finished the ride we had covered about 100 km (60 miles). I was pleased with how the day went and the progress of my recovery.

Day Three

Having put in a long day of vigourous activity, and having taken only a short nap, I was pleased to get a good night’s sleep. We would be leaving the city today and spending several hours traveling by car and ferry.

I was up early so decided I would start the day with a good bike ride. Fifty kilometers later I was back for a second breakfast. I had time for a short nap before helping pack for the trip.

I was in even better shape today than I was a day ago. All very promising. That is till the ferry was ready to pull away from the loading dock. There was a blast of the horn. I should have expected that but hadn’t been paying attention. It lasted longer than the blast we had a week ago coming to the island. That one hadn’t effected me beyond the initial startled response.

The ferry horn blast today was just too much. My brain went ‘numb’. I was in serious sensory overload. I could only manage basic functions. I just sat where I was. With my hands over my ears I muted the general noises around me. For the next half hour I focused on getting my sensory loading to level off and help me relax. Eventually I managed to read for awhile. Conversation would have been difficult.

Not long after I had started to read again there was an unexpected blast from the horn. There had been no second horn blast on the way to the island. While most would describe the sound as ‘ear piercing’ to me it was ‘brain piercing’. Having the second blast so soon after the first one was devastating. While it might sound melodramatic, my best description is that is felt like my brain had been split open. The effect was exponentially worse than the first one. (Think of it as hitting your finger with a hammer the second time within the same hour.)

The effect of the second horn blast took me much longer to cover. The sensory overload that resulted set me back several hours before I was able to engage with others.

One of the side effects of the ‘brain piercing’ event is experiencing ghosting. (Some people call it double vision.) Everything I looked at had a shadow. I wear progressive bifocals and so I can experimented with looking at things through different parts of my glasses. It didn’t change anything.

By evening I found it impossible to focus. Only nearby objects were clear enough enabling me to still read. Thankfully by the next morning the ghosting had cleared.

Summary Points

Developing the knowledge to manage ones sensory loading had a direct bearing on ones quality of life. Some factors to consider to reduce the repeated occurrence of sensory overload can be summarized as:

  • Every sensory input affects ones sensory loading, including thoughts.
  • Sensory loading can and will be carried over from the previous day or days.
  • Certain sensory events can be tolerated if ones sensory loading isn’t too close to the limit.
  • There’s no clear measure to know how close one is to reaching sensory overload.
  • The recovery time will depend on the nature of the sensory loading and the intensity of the sensory event.
  • Each person needs to find an effective recovery strategy that works for them.
  • Ones resilience to sensory input will increase the longer sensory overload is avoided.

Feedback

Acquired Brain Injury (ABI) is different with every person. The severity of the injury and the areas of the brain that are affected makes each injury unique. There might be lessons learned from others but each person becomes their own detective in learning to live with the injury.

The above list is a summary based on my experiences. I would love to hear from others based on personal experiences. What would you add to the list? What would you modify from this list?

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Travel Challenges

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Veteran’s Park – Burnaby, BC

This trip started much better than a trip I took earlier this year. This trip started with a pleasingly successful flight.

It has now been a week of effectively managing sensory loading. Having managed to curtail the negative fallout of a plane flight across the country I resolved to maintain my level of mindfulness in staying attuned to my sensory loading. I am well aware that it is very difficult to recover from sensory overload when I’m away from home or in unfamiliar surroundings.

After arriving at my destination a week ago, after my flight I chose to deal with my neural fatigue with a 25 km cycling tour of the city. Doing a vigorous 25 km ride enabled me to get a good night’s sleep. The activity had cleared the neural fatigue so my time sleeping could clear my physical fatigue.

Each morning since arriving I have done a bicycle ride of 10 to 50 km before joining my hostess for breakfast. This routine followed by a short nap after breakfast has enabled me to participate in a variety of activities the rest of the day. This has been invigorating and very encouraging.

It has been very helpful to have set up an effective routine to start each day. Being in unfamiliar surroundings while being away from home and away from familiar environment and routines, having a new and consistent routine is helpful to reduce the risk of sensory overload.

Lesson learned

The need and the beauty of enjoying a successful transition while traveling was highlighted today when it fell apart on me.

My routine was changed today. I did not have time to put in a one or two hour cycling trip. I limited myself to a half hour. I needed to give myself time to pack and meet the ferry schedule.

Aborting or seriously altering my morning routine affected me the rest of the day. I just couldn’t seem to wake up fully. Time and again on the way to my next destination I would nod off.

Making Choices

In between the fits and starts of napping I did some reading. I read about half of “The Reason You Walk“. The book is Wab Kinew’s personal and family’s struggle growing up and living as an indigenous Canadian. Kinew’s family are residential school survivors.

In hindsight this was not a helpful choice of a book to read today. My sensory loading because of the troubling emotional struggles Kinew shares added to my challenges today.

Choosing some light reading would have been a smarter choice. Had I not set a goal of finishing the book before I needed to return it, I might have made a better choice.

No short cuts to planning

This once again highlighted for me the need to plan carefully anytime some significant changes happen in my life. There are usually a combination of related factors that need to be considered.

The planning for today should have started when the ferry was booked a few days ago. Had I considered the time the cycling would have taken in my morning routine I would booked a ferry for later in the day. That would not have disrupted my morning routine – which in turn had a domino effect on the rest of the day.

The idea of structuring this trip so we would spend a longer block of time in two different places was a good plan. The success of the first week is proof of the plan being good.

Planning the start of the trip was done with intentional detail. Yet I completely overlooked the importance of planning the mid trip transition.

Moving forward

We learn from our mistakes. Or to put a slightly different spin on it, I need to learn from my oversights. When things go well it is so easy to overlook the importance of making thorough and well thought out plans.

I will see how tomorrow presents itself to me.

Bridging What I Need with What I’ve Learned

Lions Gate Bridge
Lions Gate Bridge at sunset

I recently made a trip across the country. I was pleased with how well it went. There are likely a large variety of factors that contributed to a good trip, with some things being planned plus factors just happened to fall into place.

The important thing is to make note of what plans worked. Secondly, it is helpful to make note of which unplanned factors added to the success of the trip.

Days leading up

Since the trip would have us away for home for a couple of weeks it was important to make arrangements well ahead of time. I made sure I had coverage for things that needed tending while I was away. I also made sure I packed all essential items ahead of time.

We also worked out the additional details surround our flight across the country. Commuter train times and connections. In the end we needed to take four different commuter trains. I had taken the commuter train into the city a couple weeks ago so I was not into unfamiliar territory.

The Day of

When I woke up on the day of leaving I chose to follow my morning routine. I did a 10 kilometer pre-breakfast bike ride. The vigorous half hour activity left me feeling wide awake and energized. I also spent about a half hour in the garden. I had forgotten to hoe one section of the garden the day before. It put me at ease knowing I had done the necessary tasks to reduce the growth of weeds while I was away.

Ready to head out

Rather than drive, we had arranged for a friend to get us to the train. We boarded the train with 2 minutes to spare. A 15 minute wait for the next connection would not have been a problem. When we made our next connection we  had to make our way to the far end of the train station. We arrived at the connecting train with 5 minutes to spare. Once again, had we missed that train the next one would have come by shortly. Our next connection was a shuttle train that ran regularly between the airport terminals.

Plane seating

The check-in procedure went very smoothly; no line ups, no computer glitches and what seemed like a suitable seat choice. The computer offered seat A and B. The number 30 didn’t mean anything to me. Was that over the wing, or was that behind the wing. The A and B seats suited me fine because taking a window seat meant that I would not be interrupted by a restless passenger wanting to get past me at unexpected times. I was also away from the aisle with foot traffic constantly coming and going. The one drawback was being unable to recline my seat.

Boarding and Take off

Shortly before being called for boarding, there was a request to have passenger check in their carry-on baggage. We decided to opt for that since we no longer needed what was in our carry-on. That turned out to be a great choice. Airline staff would take care of it till we landed.

When my section of the plane was called for boarding I remained seated in the waiting area. I wanted to avoid the unpredictability of waiting in line. When the last call was announced for my seating area I got up and got in line; three people ahead of me. Being one of the last to arrive in my seating area there was minimal space left for carry-on baggage. Having checked it last minute turned out to be an excellent strategy.  (Note for future flights.)

The number 30 meant I was in the very last row. The only real drawback was a slight one. I could not recline my seat the few degrees that any other seat might have allowed.

I had taken my headphones along which cancelled most of the flight noise. The drone of jet engines seem to be louder when seated in the back of the plane. I tried reading but found it difficult as I would drift in and out of napping. Sitting in napping / awaking limbo for four hours seemed to work fine for me. I did get up and stretch once during the 4.5 hour flight.

The snacks I had taken along was in my knapsack, not in my carry-on baggage. I made a point of remaining hydrated. Between the juice and ginger ale being served and my water bottle that went well. Having taken along my own snacks I had on hand what snacks worked best for me.

It was a day time flight with clear weather for 75% of the time. It was great watching the changing land forms and evidence of human activity below; the lakes and trees of northern Ontario, the farmland of the prairies with irrigation circles in places (not crop circles), tracking the traffic on the Trans Canada highway (trying to identify parts I had cycled 2 years ago) and the mountainous terrain along the Atlantic/Pacific continental divide.

Arrival

When we landed I waited with trying to get off the plane. I find it best to avoid standing line, the crowding and the unpredictability that comes with that type of active waiting.

By this point in our travel I was approaching my limit. I was tired. I was hot. And we had another 40 minutes to reach out destination.

I waited at the baggage carousel. I watched as the baggage emerged from the nether regions of the airport. I did not recognize my baggage as it arrived. Somehow my memory between checking my baggage 5 hours earlier and arriving to retrieve it my memory failed me. When I finally found it I realize they were one of the first pieced of baggage to arrive on the carousel.

The Final Leg

We had a family member greet us as we emerged from the airport. She had decided to meet us by transit rather than come by car. Even though the transit ride was hot, what helped is that it was predictable. Commuter traffic at 5 pm would have been much more challenging by car. Being escorted onto the transit system worked well as I didn’t have to figure out what to transfer and which bus to take.

Recovery

After visiting for an hour and having a hearty meal I heading out for a bike ride. I had recovered enough to take that on. For the next hour and a half I enjoyed some wonderful bike riding in what I would call a very ‘bike friendly’ city. I was familiar with the basic layout of the city so I found my way around with only one request for directions.

The success of the 90 minute bike ride was a good indication that I would sleep well. It was great to not have to go through a prolonged recovery phase. Detailed planning and being my own ‘detective’, as my OT encourages me to be, clearly paid off with this trip.

Plan ahead, take notes on new strategies that work, and leave time to make up for oversights are my strongest take aways at this time.

From Les Mis to Come From Away

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Visiting St. John’s NF – having come from away

Just over four years ago I attended a local performance of Les Mis. That was a few weeks following my injury which was eventually labelled as an ABI. (acquired brain injury). At the time I was struggling to hold onto my job trying to at least work half days and gradually failing at that.

I had no idea what effects a musical performance would have on my ABI condition. About 15 minutes into the Les Mis performance I was dealing with sensory overload but having no previous experience with it, had no idea what was happening. I was in highly unfamiliar territory.

I was seated a half dozen seats from the aisle. Since I couldn’t leave inconspicuously I decided it was best to wait till intermission. I did what I could to hold out till intermission. By then I had great difficulty with my balance. I couldn’t talk or even formulate my thoughts. I was in tears. In short my brain was so scrambled I could only manage a bit more than the basics, just keep breathing. (That night it took a long time to figure out how to breathe and sleep at the same time. When I fell asleep my breathing would stop. When I drew a breath it would wake me up.)

I had just come through my first and probably my worst of many experiences of sensory overload. I found out later that severe sensory overload can trigger some serious medical issues.

Four Years Later

I recently attended a showing of Come From Away, a moving story of 7000 people landing unexpectedly in Gander Newfoundland as a result of the 911 events happening in the United States. This time I attended a performance knowing what factors would put me into sensory overload.

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Learning to speak Newfoundlander

The production on the day I attended the performance was billed for people with sensory issues. In general terms this would take in people who are neurologically atypical. This  could include people on the autism spectrum as well as people with acquired brain injury.

There were several accommodations that the theatre staff had made for attendees. If a person was dealing with sensory overload there were lounges available to provide a quiet place. An usher would remain available in the lounge. The lounge was equipped with a large screen so one could still watch the performance.

A special area was set aside so a person could be readmitted to the theatre without disturbing people near their original seat.

Some things were not described but I made some assumptions. I imagined the lighting would be toned down or the sound would be somewhat muted. I was wrong.

Before leaving home

The day we were scheduled to attend the performance I was not at the top of my game.  I spent an hour in the garden first thing in the morning but that didn’t seem to help much. I was feeling stressed, partly because of the number of things that had to be coordinated in course of the day in order to attend the performance.

We had decided to take a commuter train into the city to simplify the trip. We could avoid dealing with parking or the demands of driving in heavy city traffic. We did the 40 minute drive to the commuter train. The train took us to within a 10 minute walk of the theatre. It was a warm sunny spring day so that was also in our favour.

The Elgin Winter Garden Theatre

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Elgin Theatre auditorium and box seats

We arrived at the Elgin Theatre an hour before curtain time. This was part of the plan so as not to be rushed with any part of attending the event. We entered the theatre, had our tickets scanned and waited in the lobby near the snack bar.

From where I waited I could see people as they entered the theatre. I found it interesting to watch people entering the building. As they came in I couldn’t help wondering which people were there because they had sensory issues like myself. In many cases one could not tell whether the person was a caregiver or whether they had sensory issues. Or maybe some groups had no one with sensory challenges.

With many attendees there were indicators that the person was neurologically atypical. For some it’s the expression on their face. For others their gait as they walked gave some indication. With some there were indications in the way they were holding hands with an accompanying adult or two. For the most part these and other indicators tended to be subtle and rather inconspicuous.

With other attendees it was quite obvious that they were dealing with neurological issues. Seeing someone arrive with a caregiver pushing a wheel chair while making encouraging comments to the person being brought in. Another person was brought in by wheelchair having difficulty keeping their arms and legs calm. Others had difficulty walking. With some there was involuntary vocalizations.

Emotional sensory loading

Before the performance even began my sensory loading was ramping faster than I had hoped. Seeing the challenges that others are dealing with is hard to ignore. That combined with observing the dedication of the caregivers in making the effort to address their quality of life needs is emotionally overwhelming at times.

Had I attempted this a year ago the emotional loading would have put me into sensory overload and I would have had to remove myself from the theatre even before the performance began.

Once I was seated I realized the overt challenges that quite a number of attendees were dealing with would remain quite noticeable. The young man two seats in front of me would wave his hands over his head regularly. His two caregivers took turns helping him control his movements and reduce the distractions for the people seated near them. Another person a few rows ahead was noticeable moving up and down through the whole performance. There were a half dozen attendees within my line of sight that provided some level of distraction.

Additional Instructions

The theatre had made arrangements to have a prompter on the stage for the benefit of the audience. Just before the performance began he explained two signals that he would give at various times. If he put on his head phones that was a signal that the volume would increase noticeably. If he put his hands over his eyes that was a signal that there would be some lighting effects happening shortly.

It was at this point that I had an inkling that the performance was not modified to give a reduced sensory impact. Rather, the theatre staff was there to assist anyone who needed to remove themselves from the auditorium. Shortly after the introduction the performance was in full volume. The opening song coming through loud and clear.

Unprepared

I had come to the performance not realizing this was a musical. I thought it was a play. Not three minutes into the performance I was overwhelmed. I was in the red zone. I was in tears. My ears were ringing, and I was putting all my energy into focusing on calming my self down and reducing my anxiety. After about five minutes the intensity of the sensory experience became a bit easier to manage.

At times my sensory loading would increase to a point that I thought it best to leave the auditorium. I was only three seats from the aisle so that was not to big a hurdle. Also, the people next to me would not have been surprised if I needed to exit given the type of audience in attendance.

Through a concerted effort during the whole 100 minutes (without intermission) of the performance I was able to take in the whole story.

Having a snack before the performance and again during the performance was helpful. I needed all the energy available to focus on avoiding sensory overload. It was physically a very taxing experience.

The sensory loading was coming from two aspects of the performance. The volume of the singing and musical accompaniment and the emotional impact of the story line. I hadn’t realized before coming that this was a musical. Live music continues to be one of my toughest sensory challenges.

The story had a strong emotional impact on me because it was based on the lives of real people. People having experienced loss. People having experienced separation from family during a series of stressful events, unable to reach them even by phone. People experienced hospitality with wide open arms from people with big hearts.

Through the whole performance I was struggling between the emotional sensory loading and the auditory sensory loading. It was an ongoing struggle with no let up. By the end of the performance I could not participate in the standing ovation.

I did not even try to get up till the auditorium was empty. I then got up and managed to slowly make my way to the lobby. I wended my way through the crowded lobby looking for a quiet place.

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Elgin Theatre art show – Signal Hill

I headed down the stairs to the art display . No one else was there. Time to look at the paintings of Newfoundland. After about twenty minutes I was ready to walk back to the train station. The longer I walked the better my momentum became.

By the time I boarded to commuter train I was dealing with a low grade headache. The other symptoms from attending the performance had mostly cleared up. By late evening my headache had cleared.

Next morning I was stiff. Every muscle in my body felt like it had gone through an intensive workout. Chest muscles, arms, legs, fingers, back. The challenge of dealing with sensory loading for the 100 minutes was like an intensive physical work out.

In conclusion

Attending what was billed as a performance for people with sensory challenges was helpful in some ways while at the same time adding to my challenges.

Seeing the challenges others have with their sensory and related issues contributed significantly to the emotional sensory loading. However, attending a musical and dealing with an emotional story line, I would have had similar sensory challenges at a regular performance.

What I appreciated most about attending the performance is that it put me at ease about my own sensory loading. I felt I was in a socially safe environment. That reduced my level of stress helping to reduce some of my sensory loading. Not feeling at risk of embarrassing myself was a value added feature.

A day after the performance I was wondering why I didn’t make use of one of the accommodations that Elgin Theatre staff had made. I had been so focused on making it through the performance that I didn’t even entertain the ‘problem solving’ of considering the benefits of walking out. Had I walked out I would have been able to see the performance on the lounge screen. Next time I might walk out and try the lounge with the TV screen. However, I didn’t come to watch the performance on a digital screen so that wasn’t my ‘go to’ solution. However, listening to the digital version of the music would have significantly reduced my sensory loading.

Listening to the story line was a vicarious emotional experience. As such most of my emotional sensory loading cleared in an hour or two. That is in sharp contrast to recovering from personal emotionally challenging situations in which it often takes me several days to have the sensory loading clear enough to taking on my daily tasks.

Preparations to consider

The event caught me off guard on some elements. Though I was prepared for others due to previous experiences. That made me consider what I could have done to further help mitigate the negative effects on me.

My preparedness kit now contains the following items.

  • Snacks: to help maintain my level of energy
  • Headphones: to mitigate the effects of unexpected noisy environments
  • Note pad: to communicate when my sensory loading makes talking difficult or impossible.
  • Travel Pillow: assist with immediate short term recovery

Over time I will likely add additional items to my kit.

The Catch 22 of Acquired Brain Injury

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Catapult

I attended an ABI (Acquired Brain Injury) workshop, and support group recently. It was new experience. It left me musing about a number of things.

Even though no two brain injuries are the same there are some common elements. Memory loss and the loss of ability to problem solve seems to be most prevalent. Loss in the area of executive functioning is a close third. The challenges surrounding these three skills can be very frustrating. Frustrating because these are some of the key skills most needed in adjusting to a post injury life. The ability to figure out, implement and remember the changes that are needed is a key part of developing a quality of life post injury.

It’s the skills or abilities that are lost due to brain injury that are most in demand to regain a reasonable quality of life.

Memory challenges

With the loss of memory, learning to live with a post injury reality has numerous challenges. Making new procedures part of a daily or weekly routine are hard to adopt on a consistent basis. Additional demands are placed on ones memory, whether it’s dealing with additional appointments, remembering what activities to avoid or minimize, dealing with agencies such as insurance or other injury support agencies.

The need to problem solve is a skill that is in higher demand post injury. Learning how to accomplish tasks or daily activities with reduced mobility or much reduced level of energy. The reduced energy if often from loss of energy due to neural fatigue.

Strategies to the rescue

Learning new routines can be difficult. Learning new strategies to help remember new routines results in changing one’s life at two different levels of functioning.

Over the past 4 years I have gotten used to receiving two kinds of reminders. One type of reminder is getting a prompt that it’s the time of the day that I need to do a particular activity or head out to an event.

The second type of reminder is getting a prompt about the strategy that I should be using. For example, I recently had my family doctor complete a medical examination for renewing my driver’s license. Because of the residual effects of my injury my completed form does not go through the normal route that I have done for several decades. As I left the doctor’s office he reminded me to read the instructions to ensure the form was sent to the correct place. It hadn’t crossed my mind to check the instructions till he pointed that out. On top of that I was surprised that I hadn’t thought of it myself.

That is just one example of how the deficits I am dealing from my injury requires new strategies in order to compensate for my injuries. I have had to apply this to various areas for which I continue to take responsibility.

To make sure bills get paid on time I take the bill as soon as it arrives and open my online banking app.   I will then post date the payment so that I don’t have to remind myself and risk a late payment charge. However, applying this strategy on a consistent basis continues to be a challenge.

Executive Functioning challenges

Some tasks I find too complicated to take on myself. The most challenging one is getting reimbursement for expenses covered by more than one insurance company. Prior to my injury all my medical expenses were reimbursed through my work place insurance plan. Great. So simple.

With my injury I had the unfortunate challenge of having to deal with a two step process. I needed to first submit my expenses to my work place insurance and then to the auto insurance. It’s keeping track of the different steps along with the delay between submitting receipts to the first insurance company before I can submit to the second insurance company that things go awry. When I was at my lowest level of personal functioning that’s when I had too many of these. I finally resorted to having someone else take care of it for me.

Problem Solving challenges

Once I had recovered sufficiently from my injury to take on some projects I quickly realized that I had issues with problem solving. The problem solving issues appeared in two different formats.

  • Undoing mistakes

As I was building things I found myself forgetting some of the techniques I had learned over the years. This was frustrating as I was used to going ahead with projects knowing how to do it and expecting to be reasonably successful. The errors of cutting materials incorrectly and having to redo different steps in a project was disappointing and at times frustrating, not to mention wasting good material. Also, errors in the early stage of a project required some heavy duty problem solving to correct the situation. Needless to say, neural fatigue would set in rather quickly with that type of cognitive demand.

  • Planning

In order to successfully do the types of projects I had been familiar with, I realized that I needed to be intentional about the planning stage. It was no longer good enough to have a general overview of what I wanted to do. I now needed to plan each step and have a clear picture of how each stage of the project should unfold.

20190427_093247Recently while building props for a Medieval birthday party for my grandson I was very intentional about doing it right. I took on the challenge of building a functional catapult for attacking a castle. Every time I needed to think through a particular detail I would put the work aside and work on a different part of the party preparations. That gave me time to mull it over.

It might appear easier if I had downloaded an instruction booklet and buildt the catapult based on someone else drawings. I considered doing it that way, but that would have added a very different challenge, one of following someone else instructions. That would have contributed more quickly to neural fatigue. I chose to build my design and incorporate the materials I had on hand.

The last step in building the catapult, getting the tension tight enough was a two person operation. In the end I was able to make the catapult work reasonably well. In addition to that I was able to complete the castle, eight feet high and twelve feet wide to add an element of realism.

On the day of the party each guest was given a wooden sword, which my grandson had painted, and a wooden shield to decorate, which my son had made. This was greater than any ‘loot bag’ they might have gotten at a birthday party.

Being Intentional

With building the medieval props I knew I had only one week. I was mindful to carefully pacing myself, having my grandson or son complete some of the things I had committed to but couldn’t manage to complete before the deadline.

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Memorable castle under attack

Had I not planned and paced myself I might not have completed the props I had agreed to make. I also might not have been in a condition to enjoy the party. It’s so easy to fall into pre-injury pattern of doing things in the excitement of getting things ready for a exciting event. That would have been to my detriment.

Midway through the party I stepped away and crashed. I was helping the kids with the catapult. Dealing with groups of four or five kids and their energy level quickly drained my energy. When my part of done I walked away and crashed. I slept for an hour and  a half. Success for me was contributing in a significant way to a memorable event for my grandson and the fond memories for myself of being part of the event.

Needing a day or two for recovery time following the event was not a hardship. It left me with a sense of wanting to take on something like that again… though not for a month or so.

P.S. If you live within traveling distance you are welcome to borrow the castle and catapult. You need a 16 X 16 foot (4.8 m X 4.8 m) area to set up the castle plus room to attack the castle.

 

Stumbling onto a Living Assist

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The Shine of a New Vehicle

I have been learning to live with an ABI (acquired brain injury) as a result of a motor vehicle collision. The journey of recovery started a little over 4 years ago.

Initially, one of the key challenges was driving or simply being a passenger in a motor vehicle. I eventually was diagnosed with PTSD symptomology related the collision. Being in a car for a period of time would put me into sensory overload. It wasn’t that I was hesitant to get into a car. It was the toll the low level stress or anxiety that would build each time a vehicle would approach. The bigger the vehicle the greater the effect. Whether I’m the passenger or the driver the results would be similar. Being on a divided highway helped to mitigate some of the effects.

Initially I could not tolerate any trip  over 30 km. Gradually I could manage longer trips by taking a break every 100 km. It meant having to plan each trip carefully. Not to mention that taking trips took much longer than pre-accident.

Noting Progress

Gradually the out of town weekend trips to family became less demanding. In the first couple years I would spend two to four days to recover. I would be reasonably recovered in time for the trip home. Gradually I would not need as long a recovery time once I reached my destination. At times, if the weather cooperated I would complete the last part of a trip by biking the last part of the trip. The invigorating exercise of biking the last 40 or 50 km would reset my body by clearing enough of the stress build up to allow me to visit rather than taking a nap as soon as I arrived. (Needless to say the biking strategy doesn’t work too well in the winter months.)

I have also done some solo out of town trips by car. I would work out an alternate plan if I could not complete the trip. One time I under estimated my level of endurance without having set up an alternate plan. I had to arrange for someone to come and get me as I was unable to drive home.

Some More Progress

A little over a year ago I did a number of longer trips with very encouraging results. I was still taking a break every 100 km or so but was arriving at my destination with much less sensory loading. This was very encouraging. I did not notice the change at first. Then again  I’ve learned to expect the unexpected. Sometimes a challenging situation goes unexpectedly well. Other times it goes in the opposite direction.

A Noticeable Improvement

About a year ago I did a trip with a few brief stops, and then joined other family members for a restaurant meal. (Restaurants, even if they are not busy at the time, have their challenges for me, particularly the ordering process. Too many choices and then trying to focus while a waitress recites the specials for the day.)

Later that day it dawned on me that the combination of the drive and the restaurant experience had resulted in minimal neural fatigue. That prompted me to take a look at what had changed in my environment. I realized the biggest change had been in my driving environment. The trip to our family usually involves driving through a metropolitan area of over 6 million people, which had also been the case on this particular day.

Driving Assists

The more that is at stake the greater the fatigue. When it comes to driving one does not want to make an error. The consequences could be life altering. So the need to remain focused while driving is paramount.

With the new car we purchased about a year ago, it included a feature called pre-collision. When the cruise control is activated the pre-collision feature can also be engaged. With the pre-collision engaged the car automatically adjusts to the flow of traffic. Driving in stop and go traffic is very effectively handled by the car.

Without the pre-collision there are just too many things to stay focused on.  Watching for  the vehicle ahead of me. Responding with the right amount of braking and acceleration to maintain a safe gap. In stop and go traffic this can quickly become too demanding. (There is a reason why a high percentage of collisions happen each day during the morning and evening  commute.) With the pre-collision I still need to keep a close eye on things, particularly watching out for vehicles that suddenly cut in front of me. The pre-collision system doesn’t respond quick enough when someone cuts too close in front of me.

The pre-collision removes one of the biggest components that causes me neural fatigue while driving, the constant need to remain focused. At the same time it reduces the risk of an accident. This reduced risk was borne out by the car insurance quotes I received when I took delivery of the new car.

A Safer Car

The car we took off the road was a 15 year old Elantra without collision coverage. We insured a brand new car with the same coverage plus collision. The cost was a couple of dollars cheaper to insure the new car. (All other factors such as geographic area, claims record, number of demerit points etc were unchanged.) I was pleasantly surprised because I had definitely expected to pay a slightly higher premium.

If the question was put to me, “Are you a proponent of ‘self driving’ cars?” my answer would be a clear “no”. I think there are issues when choices are taken away from the driver due to automation. (Think of the Boeing 737 Max 8.)

The driving assist that was a standard part of our new car purchase has improved my quality of life. A benefit that I had never considered but have warmly welcomed.

Messiah Concert

Messiah Concert Peterborough Singers
Messiah Concert by Peterborough Singers

I had not attended a live music event in quite awhile. Somehow live music makes me succumb to sensory overload due to neural fatigue quicker than almost any other activity.

That hasn’t stopped me for exposing myself to short doses of live music. Last fall I took in a half hour of a jazz music festival in a nearby town. Half hour was enough. The shuttle bus pick up spot was just outside the gate. Unfortunately it took too long for the bus to arrive after paging the driver. The extra exposure to the music put me over the top. In the back of my mind I was thinking, “Why do they have to turn the volume up so loud. Why do they give the music so much base?

That was then. A few months later I thought I would make another attempt to ‘enjoy’ a live music event. After all, I was told that total avoidance would make things worse. So two of us purchased tickets to attend a Messiah performance put on by the Peterborough Singers. A volunteer choir with a reputation for holding top notch performances.

I thought this was a more moderate choice than a Jazz Festival. The volume would not be as loud and Handel did not work too much bass into the composition.

On the whole I managed the event relatively well, all things considered. It was a lengthy performance and there were moments that I had my doubts about making it through the whole performance. But I did. Yeah!

Notes for Future Concerts

I continue to experience gradual recovery from a TBI. One way to aid my recovery is to attempt activities in moderation. While it’s hard to do a concert such as the Messiah in moderation, there were accommodations I noted that would make the next experience go better.

Notes to self:

  1. Have a friend reserve a seat for me and then wait outside till just before the concert begins.
    1. Reason: The concert venue is a busy place in the minutes leading up to the start of the performance. People are bustling around finding seats and getting their coats put away.
    2. The chatting get progressively louder and more chaotic as the place begins to fill up.
  2. Request a reserved seat that fits my needs.
    1. Reason: First of all, I find it helpful to be seated where I can make an inconspicuous exit should I experience sensory overload. Disrupting others or forcing my self to wait for a more opportune time to leave will simply add to my sensory loading making my recovery slower and longer and so missing more of the remaining concert.
  3. Be mindful of my surroundings by taking stock occasionally.
    1. Paul Otway trumpet
      My apologies to this trumpeter

      Reason: One never knows whether the conductor has some innovations in mind. Just after the intermission, as the choir was getting ready for the next number, the conductor was looking my way. He looked my way a few times before the music began again. It was the trumpet playing an arm’s length from my ears that suddenly made me realize why the conductor had been looking my way. The trumpeter was standing in the aisle just behind me. First of all, the assault on my senses couldn’t have been worse. Second, the trumpeter was standing in the aisle blocking my only escape route. After a moment’s panic I realized my best option was to put my head down with my hands over my ears. As rude as it might have looked, barging past him to the exit would likely have disrupted the whole concert…  and much more embarrassing.

  4. Go outside during the intermission.
    1. Reason: Going outside would help me get me away from the chaos of people milling around, entering and exiting the concert hall.
    2. Second, walking helps minimize the sensory loading. So I decided to walk till I was ready to go back into the concert. Hopefully the recovery is fast enough or the intermission long enough so I wouldn’t miss any of the concert.
  5. Have a snack along for the intermission.
    1. Reason: Keeping up my energy level with some nutritious snacks seems to help with recovering from sensory overload. If no food is allowed in the venue, it makes the intermission even more important.

Overall, attending the concert was a success. At the same time, I have decided to not attend the Messiah for a couple of years. The songs seemed to have drilled down into my brain. A number of the songs kept bouncing around in my brain for several weeks. They just wouldn’t go away. It might be part of the consequence of my brain not being able to filter or moderate what I’m listening to. Not being able to moderate the sound input to avoid sensory overload, but also not being able to moderate the music so it doesn’t get fixed so persistently into my memory.

I will probably wait a half year or so before attempting another live music event.