Donating (oops) Lending My Brain to Science

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Turtle Beans ready to be harvested

In the past few weeks I have reached a number of encouraging milestones. Each one is a reflection of some part of my journey of recovery and acceptance of living with a brain injury.

1. I was discharged from receiving OT ( occupational therapy) services and able to successfully plan my days and manage my limitations.

2. I was informed that the inflammation in my brain is totally cleared and the brain function in the concussed area looks normal. I am almost five years post injury.

3. I am recently able to manage between six and eight hours a day of physical activity,  without needing a nap to make it through the day. Physically demanding work doesn’t have the same tiring affect on me as cognitively demanding activities.

Being a Guinea Pig

I recently agreed to participate in a brain injury research project based out of Britain that is focused on assessing and quantifying a person’s executive functioning following a brain injury.  While I had no idea what was involved I decided it was important enough to help where I can. I had very little idea of what my participation entailed. All I  knew was that I had agreed to give up about three or four hours of my day. This included driving 50 km to the testing site.

The testing involved completing a number of tasks, including an injury related interview and a written questionnaire related to my daily functioning in the past month. That was followed by a couple of cognitive activities requiring a certain degree of concentration and problem solving. Once these were completed I was put into a real time job simulation for about 45 minutes.

After Affects

I left the testing site after about two hours of doing cognitive activities that required a high degree of focus and attention. The time went surprisingly fast. The testing environment was pleasant and supportive.

It wasn’t till I left the testing area and sat down to wait for my ride that I realized how tired I was. I was in a daze. It wasn’t till I sat in the waiting area that I became aware of the extent of my neural fatigue. I found myself tired and yawning frequently. I felt like going to sleep while at the same time feeling restless.

I quickly realized that I was in no condition to drive home. Fortunately my spouse had realized that before we left home and had planned on doing some personal errands while I did the guinea pig work. We made one stop on the way home to pick up some groceries. That went alright. The physical effort of pushing a shopping cart around was a welcome change to the cognitive tasks I had been doing.

As I was heading home I recognized the type of headache that I get when I’m dealing with inflammation in my brain. That came as a surprise given the “all clear” I had recently been given. Despite the “all clear” on inflammation and the concussed area of my brain functioning quite normally, it is important to continue to manage my limitations. The concussed area is weaker than other parts of the brain, and overworking that area definitely has negative consequences.

Change of Plans

By the time I got home I knew I needed to reschedule the rest of my day. Cut out all activities that are predominantly cognitive. Even those that are not cognitively very demanding. From past experience I knew I needed to switch my activities to ones of a physical and somewhat repetitive nature. So my schedule change looked like this:

– Canceled my ticket for a live drama performance that evening. Too much thinking taking in the story line and all the other sensory input that happens during a play and being in a social setting. I would be too restless to sit through a lengthy performance. I would likely lose focus. And it would delay my recovery from the headache.

– Canceled going over to visit my grand kids. It would be too busy an environment. I would lack patience from time to time. Not a good way to deal with my grand kids.

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Hand picking turtle beans

– Went outside and picked beans. (October is not fresh bean season. I was picking dried turtle beans.) The job is quite repetitive and allows me to deal with some of my restlessness. I have found being outdoors to be the best place for recovery. Doing a solitary activity allows me to be totally in my own space.

Further side effects

I went to bed at my regular time. Not so much because I was physically tired or sleepy, but as part of properly managing sleep hygiene. It took me over an hour to get to sleep despite not having had a nap earlier in the day. With the neural fatigue aches a pains become amplified. (I’m still dealing with a shoulder injury from late September as a result of a mechanical failure with my unicycle.) Some time in the early part of the night I woke up, struggling to get out of a nightmare.

I had not had a nightmare in over two years. I’ve come to realize that the greater my neural fatigue the greater my risk of having a nightmare. It seems like the neural fatigue, when it gets severe enough my brain gets confuse and I can’t distinguish between reality and what is a dream. It was upsetting to once again find myself in a situation where I was anxious about getting back to sleep. Fortunately there was no repeat.

Flashback

It’s been awhile since I’ve experienced this level of neural fatigue following a somewhat normal activity. Today’s experience and it’s after affects reminded me of what I experienced quite regularly in the first few years following my injury. I would find myself in this type of space after simply trying to get through a normal  day. (Over against today having done a forced situation with the intent of pushing me beyond my normal limits.)

Next Day

I woke early the next morning. By 5 am I was too restless to sleep. I got up and moved around for an hour. I lay down for an hour before getting up for breakfast. It didn’t take long for me to realize I was feeling emotionally vulnerable.

Mid morning I found myself humming tunelessly from time to time. A sure signal that my sensory loading was ramping up quickly . I also noticed my jaws were clenched,  being unable to properly relax. After spending a half hour with my grand children I was getting restless and needed to move to avoid going into sensory overload .

The second night sleep evaded me for a long time. Along with that I woke up very early. With only three hours of sleep I knew I had to lie low for an additional day. I did some yard work but was held back by my low energy level. After a couple hours things improved. In the end I spent most of the day doing some very repetitive work – picking turtle beans. By supper time I had filled five 40 lb bags of beans. I felt good and tired. That would help me sleep better.

Change of mind

Given the dramatic and disruptive effect being a guinea pig had on my day and the following day I’m glad I had signed up for just a one off volunteer experience. Had the testing involved tracking me through a series of events I would have had to make a  tough decision. Either dismiss myself from the experiment or plan each testing day so that I would have no other commitments. Even so, knowing I can’t alter the side effects of the testing, my ongoing participation would have been a tough call. Fortunately they only needed to collect my data for a one time event.

Thankful

Following the testing experience it made me realize how much my healing has progressed. It makes me thankful for the increased level of endurance for a broad range of  activities. I was reminded how important it is to plan strategies that keep my activities within my limits.

I felt I was in familiar territory, dealing with an extended period of sensory overload. I knew what to avoid. I knew what kind of activities were helpful. My three and a half years of training was put to good use. I remained upbeat and hopeful that this would soon pass.

Despite careful daily planning it doesn’t take much to have things go quickly goes off the rails. It happens anytime I misjudge the demands that an activity can place on me and push me beyond my limits.

And lastly I’m thankful for professionals who are constantly looking for new ways to help people living with brain injuries and helping them improve their quality of life.

Little did I know that the three hour committment would end up taking the better part of three days out of my life. Take it for the team!

Celebrating the Morning After

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Yard Games: Giant Jenga and Giant Boggle

I recently attended the wedding ceremony, reception and dinner of a niece. It was exhilarating to experience the celebration without having to go through a noticeable recovery phase in the days that followed.

The successful attendance and participation in this celebration stands in sharp contrast to having gone through two week long recovery stints in the past month due to emotional setbacks. It’s wonderful when the advance planning and preparation works because the hoped for results can never be guaranteed.

Pre-planning

In the days leading up to the event I made sure I didn’t take on anything demanding in my areas of vulnerability, or agree to take on something new and untried. I maintained my regular cycling routine as cycling contributes to recovery if things have not gone too far south. What I can’t control are emotional setbacks. When they happen I just need to ride it out.

I had a request from my niece to bring my yard sized Giant Jenga to be used in the time between the ceremony and the dinner. I decided to replace the cardboard box and build a proper wooden carrying case for the 48 wooden blocks. Working alone building the carrying case was a good activity to keep me focused and experience minimal sensory loading. After completing the carrying case I brainstormed with my daughter about making another yard game. With her help we made a yard sized Giant Boogle game. After cutting out the 16 cubes we had the time consuming task of hand painting the letters. With the cubes having 6 sides we realized that we were painting more letters than if we had made a yard sized Giant Scrabble game. Once the lettering was finished I decided that there was enough time to make a handy carrying case to complete the project.

Completing the wood working project was helpful in other ways as well. Having the opportunity to contribute to the wedding event was heart warming. That would help offset some of the disappointment if I experienced neural fatigue and had to leave partway through the celebrations.

The Day of Planning

My sleep pattern has been improving somewhat. However, the day of the event I woke up at 4:30 am. After being up and about for a couple hours I was ready for a nap. (It always works best if I take in one nap each day.) By 10 am my nap was done for the day.

I made sure I had my rescue kit with me. Having the basic assists that would help ensure success. The main thing I needed was having my ear plugs with me. I was expecting lots of music with maximum of volume. I didn’t want that to interfere more than needed with my participation.

The drive into the city was about an hour and a bit. I was fine with doing that trip without a break. I then had a couple of hours to relax before arriving at the event. The last part of the trip was by transit with someone else leading the way. That meant no additional demands in figuring out transit routes, transfers etc.

At the Event

Arrived at the wedding venue with enough time to be able to mingle with other guests was helpful. I usually make a point of keeping conversations to a one-on-one or something close to that. Larger social groups adds too quickly to my sensory loading.

Fortunately part of the event took place outside while the major part of the event was indoors. (Indoor acoustics are much more troublesome on several levels than outdoor acoustics.) I was mindful of the noise level while mingling indoors. I was judicious about using my ear plugs when I was indoors. Unfortunately the ear plugs are not conducive to conversations. (Maybe I should consider taking up lip reading.) I would wander out of the building at regular intervals. It’s when I stepped outdoors that I would realize that the noise had started to build my neural fatigue. I made a point of stepping out before I noticed signs that my neural fatigue was starting to build. (I usually don’t notice the buildup when I’m in the moment.) In that way I was able to minimize my recovery time.

After the wedding ceremony, part way through the reception time I took a break away from the venue. It had been impractical to bring my bike, so I had slipped my unicycle into the car before leaving home. The vigorous physical activity of cycling, which is even more demanding on a unicycle, is much more helpful as a recovery activity than simply going for a stroll. After cycling a couple kilometers I was ready to rejoin the event.

During the dinner I stepped out when volume went too high. I stayed near by so I could step back in when there were speeches given, games were played or toasts were given. I did not feel conspicuous about stepping out as there were always a few people milling about. (I did note that some guests sat in the same place for a good part of the event. Hard to imagine doing that.)

By the time the event was well underway I was still managing my sensory loading and neural fatigue very well. Later in the evening during the dance I decided to try unicycling to the rhythm of the music. This basically involves idling and keeping rhythm. This was the first time in five years that I had attempted that. I was pleased with my level of endurance. I made sure I was wearing my ear plugs. Keeping the rhythm, the focus and the vigorous physical demands worked well.

After the Party

I left the wedding celebration close to midnight. It was a record for me in recent years. I stayed with family in the city rather than doing the hour and some drive home. After such a full day and a busy evening it took a long time before sleep overtook me. I needed quite a bit of time to wind down.

I slept late and felt surprisingly good when I woke up. After a hearty breakfast I decided to do some cycling. In about an hour I covered close to 6 km by unicycle. (The effort it takes to unicycle that distance would translate to about 24 km by bike).

Arriving home mid afternoon was so encouraging. I had not crashed. I had not arrived home exhausted. I had energy to carry on.

This was one event with good memories all around. A reason for ongoing celebration. Celebrating successful planning. Celebrating not needing to recover. Celebrating supportive family. Celebrating life!20190913_070449

Martial Arts and Living with ABI

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WiFi and Wireless Cables are not the only wires that are crossed.

Most of my challenges when it comes to managing my ABI symptoms happen when I’m away from home when my routines and familiar places are disrupted. When I’m home things are generally predictable. If I get into an unpredictable situation, being home allows me to return to a reasonable level of daily functioning within a day or so.

Recently that pattern was disrupted. I usually don’t post a blog while I’m at loose ends. This is for two reasons:

  1. I usually choose to share once I’ve more of less figured out what is going on in my recovery strategies.
  2. I usually lack the energy to post a blog or lack the cognitive coherence till the neural fatigue clears. Set backs often involve cognitive overload and so I need to consider the demands I put on my brain.

This time I’m in the middle of a multi-day slump with cognitive and neural fatigue. My ability to deal with situations is at a low point. I’m not adverse to having people around me but as soon as someone drops in for a visit, not matter how brief, I realize how fragile I am.

When I have a visitor I will muster my energy, especially after a nutritious snack, and manage to participate in a limited way in the visit. Receiving a visit when I’m at a low point helps relieve some of the isolation while at the same time it accentuates the isolation that comes with living with ABI.

How Did I Get Here?

The discouraging part of hitting a low point for several day while at home is the mystery of determining how I ended up there. This week there were no challenges such as I am accustomed to dealing with while traveling or even being out of town for a day. I’ve been close to home all week. Haven’t been further than 50 km from home and then only for a few hours.

I was first aware of my current state of ABI affairs the morning after attending the Fourth Line Theatre play, Carmel. I have been attending the Fourth Line Theatre on an annual basis. Attending a play usually turns into an event with a few friends as I did this week.

The play Carmel was emotionally taxing for me. Even though I know it’s a story, my brain lacks the filter that would otherwise allow me to keep better emotional distance. With a movie I’m better able to keep a bit more emotional distance because it is a less personal media.

In the case of watching Carmel, there was also the real life emotion of watching a young actress doing such an wonderful job, acting in real time. The emotion of the story was further highlighted with live music interspersed throughout the evening with lyrics that were both humorous and emotionally touching.

The intermission was a timely break for me to walk away from the crowds and take in the restful sounds of the rural landscape as it approaches sunset. Needless to say the second half of the play added to the emotional sensory loading that was only partially shed during intermission.

The Day After

It was the morning after the play that I became acutely aware of the challenges I was dealing with. I had no commitments for the day so that was in line with good ABI daily planning. The plan was to take it easy, do some gardening  and have a mid day nap.

Technical Support Line

But life intervenes. The internet has been down for a day or more. And so I was called out of the garden to deal with the phone call with a technician from our ISP. All seemed to be going well. The technician was polite and was not trying to rush me. In addition he insisted with staying on the phone till he was double sure that every device was connected and working properly.

When things were finally resolved, after about an hour with the technician, the full force of my neural fatigue hit me. My first comment when I got off the phone was that he talked too much. Various times as he was stepping me through the trouble shooting he would keep talking.

I would tell the technician that I got it. He would keep explaining what to look for  and what else might be helpful. Unfortunately  I’m unable to block out the additional irrelevant information. At the same time I’m trying to make sure I don’t miss his next instruction. The cognitive demands of balancing this was slowly but surely contributing to neural fatigue.

The other challenge is that he was not good at listening. He asked me to identify the brand name of the router – a Belkin. Even though I told him he kept referring to a D-Link router and giving instructions based on a D-Link router.

Had I realized what his over explaining was doing to me, I would have stopped him. It would help if he would exercise some economy in giving instructions. (That’s my reminder for the next time I’m on the phone with a technician.)

Untimely Repair

My second matter of life intervening happened a few minutes after the phone call. It was solely my decision. No pressure except for the pressure I put on myself to get rid of an annoyance. So I felt it was an urgent enough matter. The patio door screen had been jammed for the past couple of days. Since it’s the most heavily used door in the house I decided to trouble shoot the issue.  It would just take a few minutes I told myself.

After about 15 minutes I got frustrated and lost patience. I should have realized that dealing with neural fatigue following the hour long phone call with the technician was the worst time to tackle a problem solving repair.

I walked out of the room, lay down and slept for two and a half hours, waking up shortly after lunch time. The rest of the day I made no attempt to be productive. The nap did little to reduce my neural fatigue. I would move between doing a bit of gardening and reading or else just sit and ponder. This went on for the next couple days.

Getting a Handle on Myself

My emotional gauge is still fluctuating widely. As I reflect back on the earlier part of the week there was a number of things that happened that contributed to my current state. Two friends had shared some upsetting news. In both cases the news has been gradual in the making. The upsetting news had elevated my emotions before attending Fourth Line Theatre. Maybe that’s why the play Carmel had a bigger impact on my emotions than I expected.

It’s Like Martial Arts

In martial arts it’s not the strongest or the biggest person who overpowers their opponent. It’s the person who knows how to make a timed mechanical move with minimal energy to put their opponent off balance. The greater the control and the better the timing the less energy or strength that is needed.

When I look back on the last few days it isn’t that I have encountered an unusually major event that set me back. It’s more like a series of slight moves that has bit by bit put me further and further off balance. In between there hasn’t been time to recover my balance. It wasn’t till I was too far off balance that I realized what was happening.

And so, I will just have to give it time. I know from experience that gradually I will improve. And then it will seem like suddenly I’m in a good space again.

I’ll get there:

  1. Keep a familiar routine.
  2. Don’t take on any significant commitments.
  3. Eat well
  4. Sleep and nap
  5. Keep up a reasonable level of physical activity.

The goal is to replace neural fatigue with physical fatigue.

Triggered

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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?

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.

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.