Inspiration — Part 2

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Before my injury, I often found inspiration in my life through sports.

I am a Duke Blue Devils Fan.  And I love it when my team inspires me.   I played Basketball in High School and loved it.

But it wasn’t until I moved to North Carolina to attend graduate school in economics at Duke that I really became an avid college basketball fan.   The rivalries in ACC Basketball take the sport to a whole new level.   And I realized that following the team provided good everyday conversation with those around me.   From my perspective, the choice was either to follow basketball, or not be able to talk to those around me about anything but economics during basketball.  I chose to follow basketball.

And the biggest moment of inspiration was watching the Blue Devils journey to win their National Championship in 1991.

To understand why the 1991 season was so inspiring, you would need to know The Blue Devils had lost by 30 points to UNLV (University of Nevada at Las Vegas) in the final game in 1990.

I remember sitting on the bleachers at Gregory Gym with other students cheering for Duke to make a come-back.  Duke trailed UNLV almost the entire game.   We were cheering and thinking — if our team could just get within 20 points, this could be a game!   That is a hard cheer to have to be making.

So knowing that my team had lost big in a big game on national tv in 1990 made watching their win over UNLV  in the semi-final game thrilling the next year.

I watched that game in Gregory gym also and it was a hard fought game.  In the end, Duke was victorious.

I went to Gregory Gym to watch the game in order to have the memory of watching the team win replace the memory of the loss.  Their win is indeed what I remember.

Then, they went on to win the National Championship in the final game over Michigan.

Watching the team play on tv now, always brings back the great memory of watching  their ultimate triumph in the 1991 season.   It inspires me.

Another moment of inspiration, before my injury,  that I carry with me is an experience of going to the Fine Arts Museum in Boston over the Thanksgiving day weekend while visiting my aunt and uncle.    I was looking carefully at a painting I liked in a back room, off the beaten track.   And I realized that Steven Wright was looking at the painting next to me.   I had seen Steven Wright perform his comedy at Duke and had met him through his then-manager Tom Hutchinson, a friend of a friend.

Steven told me that in order to spur his creativity and to keep himself inspired, he had to get away from his daytime routine and he would visit museums or do something different.   I had never thought about doing something like that to inspire my work.

Later,  a couple of years after my accident when I was still trying to keep my life from going from bad to worse, I started the habit of planning to go to the Smithsonian museum in Washington DC where I lived for an hour of month to inspire myself through art.

Thank you Steven Wright for teaching me such a great habit — it was one of many things that kept me going!

I have been really challenged by both my injury and by the difficulty that I had finding and getting to all the appropriate rehabilitation I needed and I am grateful to all those who helped me find my way including many great health professionals and doctors as well as friends and family.

 

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Finding inspiration

aforrest Leave a comment

I have had an enormously frustrating ten days for a number of reasons.

So finding tremendous inspiration in a phone call with another survivor on Monday has helped me focus on the inspiration (rather than the frustration).   I needed that!

Because of my injury, I deal with a lot of frustration on a daily basis.  I continue to have many problem solving skills and difficulties with new learning, getting things in sequence and difficulties with organization in my brain and in my environment, to name a few.  Technology often stands in my way rather than helps me.   I routinely have to compensate around my frustrations and I have to work at not letting the frustration I experience get to me.   Sometimes I am more successful than others.

When I have a bad week, my problem solving skills decline.    And thus my frustration can increase, sometimes to unmanageable levels.

And all that can happen with no help from events outside of me.   When events outside my control create increased frustration for me, I have to work even harder to stay as calm and even-keeled as I can.  I learned in formal outpatient rehabilitation that my problem-solving is actually better when I am calm, so finding calm and staying even-keeled behooves me.

To make the frustration I have been dealing with in the past 10 days (from outside) more concrete, I am going to share some of  the details.

My cell phone service has been horrible for the last two weeks.   My service has been dropping calls like crazy.  And, I have horrible reception right now, even when the calls aren’t being dropped.

At first, I compensated by stopping making calls.  But then, I felt like a prisoner to my phone.    When I started using the phone again, I would start the call by telling the other person that my reception was terrible and to please bear with me, as there was nothing I could do about it right now.

Alittle background here about the importance of my phone to me.     To solve problems, I need to use my phone to call others for support and friendship and to get suggestions from others that I cannot think of by myself. I need to call repair people for problems in my home.   And I need to be able to understand what others say, which is sometimes difficult for me with clear reception because of the lingering subtleties of my injury.   Understanding others is much harder when the phone reception is bad or is cutting in and out.  Plus having to redial the phone and figure out where I was in the process, is just trying to my patience.

I called my cell phone service  7 days ago and complained and listened to them for 30 minutes.   My husband had been complaining for me before then.  But, I realized I really needed to do it for myself because the bad service was so annoying to me that I knew it would make me feel better to talk with them directly.

After my call with them, I lost my voice to larynigitis.  I couldn’t talk for 3 days!   So things got worse before they got better.

I could go on and on about my increased frustrations during the time I couldn’t talk.     However, I really want to talk about the solution.

Once I got my voice back, I called Mark Palmer www.realistichope.com for a conversation we had scheduled before I lost my voice.   I had been introduced to Mark through my volunteer work at the Brain Injury Association of America in the Washington DC area years ago.   I wanted to reconnect with him this week as he had presented the first Webinair by a survivor through a new Webinair series hosted by the Brain Injury Association of America.    The series is funded by the Butch Alterman Fund and seeks to address top issues of survivors and their family members.

I had missed the Webinair when it aired in December and I hope to watch it when its posted electronically, soon.    The title was Realistic Hope.    I wanted to talk with Mark about how it went for him and what he learned from doing it.

What was the inspiration that Mark gave me in our conversation?

First, he helped me work around my technology issues for the conversation!   Mark made his career in technology after a severe brain injury changed his life in his early teens.

So he patiently advised me as to how to use my skype connection so that we could avoid the phone issues.    He was so patient, and gave me time to find my skype password and walk me through the skype website which came up on a screen where I couldn’t find a place to type in his skype information.  His patience alone was tremendous and the exact mix of attention and space that I needed to problem-solve.

Together (and with both of us showing each other tremendous patience) we kept looking for a different compensation when my first attempt on my computer didn’t work.   Since he was on an Apple machine, he couldn’t walk me through what my machine was showing.     I realized that I also had an apple machine, an Ipad I am learning to use, so when Plan A with my computer  didn’t work, we moved to Plan B on the Ipad.   And all of a sudden, we were connected!!!!  Bingo.

I want to say more about Mark’s work after I have seen his Webinair.

But for now, I want to tell you what has stayed with me the most from his conversation:

1) Mark thinks in a very holistic way about problems.  It was inspiring listening to his thinking.  When you think outside the box, you come to conclusions that solve problems in a bigger picture way.

2) Mark’s outlook is amazing.    Mark said that he’s been 30 years with out seizures.  He said that if the people who helped and supported him had given up on helping him to be seizure-free during the 20 years it took for him to be seizure-free, they would have robbed him of those 30 years.    That is quite an outlook!

3) Mark’s story about the way he looks at his journey to be seizure-free reminded me of the gift that finally being able to drive after 15 years of hard work on re-developing my driving skills gives me.   Many people supported me with a lot of baby steps that I had to master in order to be able to drive again.   And if they hadn’t done that, I would not be experiencing that gift everyday when I drive my son to school or run errands.

Mark put me back in touch with a feeling that I have when I am in the inspired place–that I have had a lot of recovery from my brain injury.

And one of the gifts of that recovery, when I remember it, is that if I can get better from brain injury, I can do anything!  I have been greatly challenged, and I have risen to the occasion.  That is a great feeling.

The day after I talked with Mark, I called my cell phone carrier again.

This time, I successfully argued for a cell phone extender — a piece of technology that will improve my cell phone reception in my house while towers around me are upgraded.   Thank you Mark!

To all the survivors who have modeled for me better ways of doing things and who have inspired me with their actions, thanks a million!

 

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Noticing the energy and hope from my new monitor — and thankful for how far I have come

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My new monitor is so amazing!   Using it releases energy for me.   I can actually “feel” that my brain is more organized when using it.    And it feels like it takes less cognitive energy for me when I use it.

I was describing to a friend today how exciting using this new monitor makes me feel.   She told me that she notices something similar when she uses her ipad (a bigger screen) rather than her iphone (a smaller screen).  She says she is able to “think” better with her ipad.   I thought that was interesting feedback from someone who is not even trying to compensate around cognitive deficits from a brain injury.    Even she can notice a difference in the size of a screen.

Upgrading computer equipment that makes my day easier or does not take as much energy out of me allows me to do more with my day.

And the feeling that I have when I use the new computer monitor is that it is opening up new horizons for me because I can think better and it takes less energy for me to use.

To me, new horizons mean new possibilities for my functioning and these new possibilities both inspires me and gives me hope for improving the quality of life in the future.

Feeling this new energy also makes me reflect about how far I have come in my recovery about earning how to manage a burst of new energy.

Early on in my recovery, I might stumble upon strategies and activities that would increase my energy and I would think that that energy meant I was “well”.   Yahoo!  Yahoo!   I wanted to be well so badly.

But I wasn’t well, I just had a little more energy.

But erroneously thinking I was “well”,  I would unintentionally overdo it because of the short-term energy and hope I felt.   Sadly, I would exhaust myself without intending to or even knowing that I was.  Often I would become “too tired to sleep” so I wouldn’t be able to sleep.   And when I did get some sleep, I would often be fatigued for days.  Or worse, fall into a downward spiral that I would not know how to get out of.  Difficulty sleeping would lead to poorer cognition and then more difficulty sleeping and ultimately my mood would sink.

I had not learned important skills like acceptance about my injury and I had not learned awareness about my injury.    These are critical skills for recovery.   When I finally was referred to speech and language therapy, roughly 3 years after my accident,  I learned acceptance and more awareness.  And I learned about how to manage my injury better so that I could be more functional.  I learned to pay attention to my long term recovery.

As I write this, I realize I have come along way!

After years of increased acceptance and awareness and practice, I have learned to notice the increased energy and let it inspire me.   I have learned to work with the energy to help me improve slowly and easily over a longer period.

And, I have also learned not to get fooled by it.

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Optimizing my brain functioning — my new monitor!

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Because of my training and work as a PhD economist prior to my injury, I think about things like how to optimize my brain as best I can.    Prior to my injury, I worked on issues that are now called “sustainability”  or “sustainable development”.  I did research on U.S. development and made suggestions for improvements for other countries hoping to leap frog past the mistakes made in the U.S.

After my injury, I have learned abit about how to harness this prior training and research to help me get better (in other words, develop and improve) after my injury .

When I can, I try to think (and I seek help to think about) better ways to optimize my brain functioning.

And, I also think (and seek help to think about) next steps to re-optimize my brain functioning each time my slow but steady improvements in my abilities take me to a higher level.

My new, bigger, monitor that we bought this week has helped me tremendously.   I cannot believe what a difference it is making!  It is opening up space for me to think better.

And in being able to think better, it is opening up new horizons for my recovery.

Let me take a step back.   When my head swung from side to side and front to back during my accident, connections in my brain were either stretched or broken.   It’s like the telephone wires could no longer pass signals across them.  I never knew how many telephone lines there were connecting parts of my brain, until they no longer were passing signals to keep parts of my brain connected!

I did not have damage to my eyes.  My eyes are fine.   However, connections between my eyes and brain were disrupted.   And I have learned first-hand that those disruptions affect my vision.

To improve my vision and thinking,   I have worked with optometrists who understand how to help me recover these connections (often called development optometrists or visual therapy doctors).  The hard work I have done has helped me tremendously.   I believe this work has been instrumental to fostering neuroplasticity and I believe its why I do not experience the type of lengthy plateaus that many people talk about with persistent symptoms.   More on that later.

Dr Franke, OD in Washington DC (now retired), Dr Judy Hughes OD in Austin, Dr Denise Paquin OD in Northern Virginia, and Dr Denise Smith OD in Austin have helped me alot with exercises, daily living suggestions and recommendations about optimizing my functioning on the computer (versus my increased cognitive fatigue from working on the computer) that have helped me tremendously with my recovery.  I have made alot of progress.

Buying a bigger monitor is following through on a recommendation made years ago by Dr Franke.   At the time, I wasn’t in a position to make the change, but I kept it on my list of things to do in future.

With our move to Austin, I have been using my laptop monitor on my computer.   (So, I have used a smaller screen than my previous home computer).   I have had lots of improvements with my eye-brain connection in past two years through my vision therapy exercises, my physical exercise and some chiropractic therapy.    With the new purchase,  I have gone to a monitor that is 24 inches wide by 15 inches — so a big change compared to the laptop.

What I am still surprised to experience each time I use my computer is how much clearer I can think with the big screen!

My non-technical explanation of my experience is that my brain can better organize what I am taking in visually.   And once I have written that description, I realize that that is a good description of what my visual therapy exercises do for my brain, in general.   It seems like the monitor is enhancing my brain’s organization abilities when I use the computer, rather than un-enhancing or not enhancing them at all.  This means that I am giving my brain practice at better organization when I use the monitor or at least not making my brains organization worse each time.

Amazing!  Just thinking about the improvements from the new monitor gives me new energy and hopes for more continued improvement for my brain.

Is it possible that the monitor will help me improve brain-functioning at a faster rate?

 

 

 

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The Power of Reflection — revisited, at a deeper level

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I love it when I am in a reflective place where I am appreciating how my life has improved during the year.

I was thinking about that improvement this morning.   I was heading out for my walk and I was cued by seeing my sun block so that I could use it BEFORE I started my walk. I have consciously looked for, and found, a place to put my sun block so that I see it on my way out the door. When  I see it, I am reminded to put it on.  The “cue” — seeing my sun block on my way out the door — means that I can get the sequence right (put sun block on before walk). The cue frees me up so that I am more likely to get sun block on either because I remember to do so (sometimes) or because I am cued to remember it. Either way, my life is better with the sun block on for my walk, and because I am training my brain about the sequence.

As I was putting on the sunblock this morning, I remembered what the pattern was like on my almost-daily walk in Arlington, Virginia before we moved to Austin, Texas. I would often have already passed by several houses when I realized I did not have sun block on, if I realized it at all. So I noticed that and tried to improve upon that. And over the years, I have. In Texas, wearing sun block is much more important than in Virginia because the sun is so much more intense here.   And I have made alot of progress on getting it on.

Like I have said, small things make big differences in my world.

I realized the other day after I posted on reflecting about my “rehab” accomplishments, that I had a lot more to say about the improvements that I have had this year in the continued “re-training” my brain department.

Why do I need to re-train my brain still? Because I have persistent symptoms from my concussion/mild traumatic brain injury that I am still working a way on and, in working on them, I am improving my quality of life and functionality. The kinds of persistent symptoms that I am working on are mostly in the executive functioning category. What is executive functioning? My non-technical definition of executive functioning is the more advanced brain functions like getting a process in sequence, getting things done in a certain time, determining what activity has priority over the others and accomplishing it, getting more than one thing to happen by a certain time and taking in new information into the process.  I will have to look up the more technical definition in a future post, but that is the working definition that I remember from my formal rehabilitation.

What I have learned is that the more often I can combine rewiring activities with another activity that I am already doing during my day, the better.  That way, I don’t have to find separate, extra time in my day to do the rewiring work.   Since I have to do the activity anyway, if I can work on rewiring at the same time,  then the rewiring work will be done on a regular basis. And the more I practice, the more I train my brain with the new habit.

The trick is that I often have to be conscious that I am doing a training activity — and that means doing it more purposefully to imprint it on my brain.   Doing an activity more purposely, sometimes can mean doing it slower.    I remind myself that I am training my brain the way I want it to work in the future and that slower will make it better in the long run.  (No multi-tasking allowed!)

Raising my son is the best example of a daily life activity that has also pushed me along in my rewiring.    As a mom, I have to think ahead — so that exercises my planning skills.   I have to think ahead about how to direct him and focus him on what he needs to know about and learn.   And I have to look for effective ways to encourage behaviors in him that are good for him and away from behaviors that are unsafe or are not age appropriate or that I don’t want to encourage.

My doctors have been very encouraging that I am at the point in my recovery where taking care of a child is beneficial to me.    There definitely was a long period where I couldn’t even take care of myself, much less another.  I have had a lot of help on learning about child raising and have been taught how to build a support system around doing it.   But my point in this blog post is that raising my child is rewiring that is mostly fun to do and that I am able to take advantage of during my day.

My son is 5 years old and thriving in his preschool class.   He’s doing well, loves school and loves his friends and family.    His progress is amazing.   And when I reflect on my accomplishments this year in my rewiring, I can count the progress in his growth and development as rewiring work and progress for me also.

If you would like to read ahead about motherhood and my injury:

www.brainline.org/content/2011/10/bringing-up-baby_pageall.html

 

 

 

 

 

 

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The Power of Reflection before welcoming in the New Year

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I usually end the year by exercising my reflection skills.  I find it very powerful to reflect about how my life has gotten better during the last year and to write these down.

I find reflecting on how things have gotten better makes me be more appreciative of my accomplishments.

Many of my accomplishments happen at a very slow rate.   In fact, at a much, much slower than I would like.

By practicing things I want to accomplish over and over, I do see progress.  My brain does eventually reorganize around a habit after I have practiced it over and over.

I find that sometimes that forward progress is easy to miss or sometimes its easy for me to take the end result for granted when it finally happens because I can finally do it and its just suddenly there.

So remembering where I was at the beginning of the year and how my life and my functionality has gotten better provides useful perspective and good feelings about my persistence and my hard work.   I am still getting better.

Here are a few of the accomplishments in developing new brain patterns (or what I refer to as continued rehab) that I have had this year:

–I am driving my own car now which means more freedom for me.    I also no longer need to schedule sharing a car with my husband which has made my life as a mom to our son much easier.    I have the car when I need it and I know that what I put in the car for our activities will be there.

–Being comfortable on some of Austin’s  bridges and expanding my range are now two of the new challenges I am working on with my driving.

–I am finding time several days a week to work on my eye exercises.  I am seeing progress from that.    I am finding that there is a shift in my eye-brain connection on my right side.  This is the area where my headaches can originate (when I am not able to rest from a cognitively-intense activity before I get a headache).   I cannot quite translate the shift  into increased function yet, but I can feel that something is changing for the better.   My hope is that this shift will eventually lead to new pathways on that side and eventually no headaches.

–I am walking twenty minutes  a day and using my arms to exaggerate the motion of going from one side of my brain to the other.   I meditate for 20 minutes a day (4 or 5 times a week).    The meditation mat “draws me to it” when I am not able to make the time to meditate.     Both the exercise and the meditation help me get through the day and make my life better.

Those are some of my reflections on ways my life has improved this year.    I do this same reflection in all parts of my life.

What are the new brain patterns you have accomplished in 2013?

Where were you when the year started and where are you now?

How do you feel when you reflect on the changes that are improving?

 

 

 

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’tis the season

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A friend who is also a mom told me the other day that she realized that if she didn’t get on top of things Christmas was not going to happen at her house. She said she stayed up late that night and used Amazon Prime and other online shopping to help her become less behind.

Her comment focused for me why December is such a challenging month for me. Because I need to keep up my sleep and cognitive rest in order to be able to manage my persistent symptoms as best as possible,  I am not able to use her strategy of staying up late. If I stay up late to do all that I think I am behind on, it only sets me back further. I must take on less in December and simplify as much as I can, in order to take on the increased tasks of preparing for and being present for celebrating Christmas.

My very wise Visual Therapy Doctor taught me a lot about slowing down in December. He did not hold our vision therapy classes  in December at all. He said there’s enough stress with the season and to teach his patients to reduce stress, he gave them time by not holding class.

He also advised against taking on anything that could be done in January in order to clear out time to do increased holiday activities like get together with friends and family.

I have followed the strategies he suggested for years and I am grateful to him that he taught me this.

TisTheSeason

I also pick which events will make me happiest and then choose among those. I have to work very hard not to over do it. Once I have picked what I would like to do, I have to be flexible about whether its good for me to do it and cancel if its not. And I focus on enjoying the things that I am able to do.

Another “strategy” for managing my life that I was taught in my rehab was to write everything down. Doing this is especially important during December. I write everything down in my calendar  in order to free up as much room in my brain as possible so that I can use as much of my brain as possible for problem solving the things that come up during the day.

If my brain is too cluttered with things I want to remember, then that clutter impedes making all the decisions that I need to make on an everyday basis — decisions so simple as which key is my door key and what to eat for breakfast or how to get from my house to the grocery store and what to buy. In December, there are so many extra details to remember and kept track of that I find I really have to be as vigilant as possible about getting things down on paper and out of my head. Presents, extra grocery shopping, trying to keep structure when everyday routine changes with the holidays  and finding good conversation topics can take up a lot of room in one’s brain if its not written down.

If Thanksgiving is my the Olympics of cognition, than Christmas is Mega-Olympics. It’s beyond what we have a term for.

Tis the season.  Enjoy!

 

 

 

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I did not know how damaging concussion/mild traumatic brain injury could be

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You would hardly think that I would be the person telling you that getting the best treatment for concussion is important and that not everyone gets appropriate treatment for concussion in the U.S. (or Canada and other countries for that matter).   When I had my concussion, I had the life that I loved to live.   I didn’t have time for a concussion and I really did not have time for persistent symptoms.

Frankly, I didn’t know how damaging a concussion/mild Traumatic Brain Injury could be when I first had my concussion, and neither did those around me.   I was in a car accident by the Lincoln Memorial in Washington D.C.   I was driving and trying to merge onto Rock Creek Parkway when I was hit from behind.

I was coming off a ramp from the Memorial Bridge across the Potomac River and the road I was merging into runs very close to the path of the ramp.    To merge, I had to move my head as far to the left as possible to look over my left shoulder at the light on the road I was merging into to see the cars.   When my car was hit by the jeep behind me, my head went from side-to-side and then back to forth (called a coup-contre-coup).

My brain was shaken inside my skull.  Neural pathways were either stretched or broken.    I may have  lost consciousness briefly.

I did NOT hit my head on the steering wheel or the windshield.  I did NOT have a coma.   There was NO blood.

I did have headaches when I went to work on Monday, so my colleagues suggested that I do to the doctor after I told them I had been in a car accident.   I was not making that connection myself.   When my symptoms worsened, my doctor sent me to a neurologist who diagnosed me with mild traumatic brain injury.   I did not understand what “traumatic brain injury” meant or could mean to me.   I felt comforted by the word “mild”.   At least I knew what mild meant–short lasting and not very bad.  Or so I thought.

When I first saw the primary care doctor and then later the neurologist, I was fully expecting to continue my life as I knew it.   I loved my work and had exciting research to do.   I had my sports that I loved (coaching kids soccer and playing volleyball) and I had an active social life.

I remember being bummed at the thought of waiting for a couple of weeks to return to sports.   When I first saw the primary care doctor, he said he wanted to keep me under observation.   He said not want me to play volleyball until he cleared me for it because he was concerned I might jostle my head further.  I was bummed because sand volleyball season had started on the Washington Mall and I had already been waiting until the kids soccer team’s season ended before I started it.   The previous year, our sand volleyball team won the trophy for the league and I was looking forward to playing again.

But my life did not continue as I expected.  In fact,  far from it.

And so here I am telling you, about 15 years later, about my experiences with trying to recover from concussion/mild traumatic brain injury.

My experiences have led me to know first-hand that:

–there can be persistent symptoms from concussion/mild traumatic brain injury,

–that it’s really important to get the best treatment possible to minimize the possibility of long term symptoms, and

–that it can be quite difficult to get appropriate treatment for concussion/mild traumatic brain injury around the world.

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Why guidelines for treatment after concussion/mild traumatic brain injury are so important to me

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Back to guidelines for concussion/mild traumatic brain injury this morning.

I have been thinking about what is the most important thing to me personally as a survivor about the updated Guidelines for Concussion/Mild Traumatic Brain Injury and Persistent Symptoms developed by the Ontario Neurotrauma Foundation (ONF).   I introduced the guidelines in my blog a couple of weeks ago.    They are the first guidelines for the treatment of civilian adults with persistent symptoms in the world.

They have been updated recently to include the latest research and clinical knowledge.   I worked with a group of other experts on these, including several experts from the U.S. and Australia as well as experts from Canada.

I know that the ONF guidelines may be difficult to read and understand since they are written for Health Professionals.   So I want to talk about what they mean to me and explain them in a way that can be understood for people with concussion and mild traumatic brain injury and those who love them.   Here’s the link to the guidelines posted on the ONF website: www.onf.org/documents/guidelines-for-concussion-mtbi-persistent-symptoms-second-edition

Before I go further, I have to say alittle about my ability to prioritize what the most important thing about the guidelines is to me.   Prioritizing is definitely not my strong -suit post-injury.   In fact, what I have come to learn is that prioritization requires some higher level executive functioning skills that I am still consciously working on to improve.

I will say though that my ability to prioritize has gotten better with practice.   In fact, I remember that people would ask me what’s the most important thing  about this or that for you?   And it would stump me.   I couldn’t answer, especially in the time that they expected me to answer it.    I learned to compensate by learning to ask — “Could you give me a yes or no question?”

Later, I learned to try to say it with a little humor — “Could you give me an easier question for less money?”

Practice in awareness has also helped me recognize that even without my challenges in prioritizing, it might be difficult figuring out the most important thing about the concussion/mild traumatic brain injury guidelines.  I say that because there are many important parts of the ONF guidelines that affect me as a survivor very personally.    And,  I know that many of the parts are important to other survivors because I have had many conversations with survivors and their loved ones who have had big difficulties finding the help they need after concussion/mild traumatic brain injury.  And the guidelines address many of the questions that I and others have taken weeks, months or years trying to resolve  for ourselves.

As I sat down to write this blog this morning, I realize that  the first thing I really need to explain is why I think Guidelines for Doctors and Health Professionals for treating patients with concussion/mild traumatic brain injury are helpful to survivors and their families and why I would like to see them for every country.   Then I will talk about specifics in the ONF guidelines.   I think they could be used as a basis (or jumping off point) for the development of guidelines in other countries.

Guidelines are important because, quite simply, many people with concussion are (still) not getting the best advice on appropriate treatment after concussion/mild traumatic brain injury.   So, again quite simply, better information to Health Professionals will lead to better outcomes for people with concussions/mild traumatic brain injuries.

 

 

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Thankful for Thanksgiving and the cognitive challenges it requires

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I am torn between blogging about what’s going on in the moment with the Thanksgiving Day holiday and saying more about the Guidelines for concussion/mild traumatic brain injury from the Ontario Neurotrauma Foundation that I started introducing last week.

This week, Thanksgiving wins.

Its my favorite holiday from way back because I love food and its a time to share good company and appreciate what’s good and what I am thankful for.   I am thankful for my family, for good food and for a roof over my head.   And I am thankful for continuing down my path to finding my voice through my blog and the self-expression that its giving me.

Thanksgiving can be a very challenging holiday for anyone.   I find I have to work much harder to manage my persistent symptoms during the holiday, so its more challenging than it was before my injury.

There are many reasons why the holiday is so challenging for me and why I have to work harder.

Here are a few examples:

— Routine helps me manage my daily life and so any holiday takes me out of routine.    When I am out of my routine, I forget to do things that I would be more likely to naturally remember or have cues to remind me, if I were more in routine.   This means that going into holidays I have to increase my planning in order to compensate.  And when I forget to increase my planning, my life can be very chaotic.

–I have to manage my energy on a daily basis so that I don’t get too tired and overwhelmed.   Thanksgiving can be a tiring holiday for anyone.   When I don’t manage my energy well, I get irritated and snappy and that makes things harder for me and for my family.   So I need to get cognitive rest to build up my short term energy reserves going into Thanksgiving and take more rest and downtime afterwards.   I also need to limit my activities that take energy and make sure I engage in activities that are uplifting and give me energy.

–In my rehab, I am practicing hard to get things lined up in sequence so that I can do them easier and better.   I work on this on a daily basis.   Getting things in sequence is pretty natural to many adults and certainly was for me before my injury.    But post-injury, I have to learn to consciously think about sequence until it becomes automatic again.    Getting things in sequence is a component of what’s called “executive functioning” skills.   Preparing for and living through Thanksgiving is the Olympics of sequencing in my mind.

What do I mean by the Olympics of sequencing?   Well, first, I only practice at Thanksgiving once a year, so its hard for me to access what I learned from last year to do this year better.   And typically its easier for me to learn tasks that require doing things in sequence when I can practice the task over and over.   If I am practicing the task often then I am more successful at using  information about where or how I misstep in order get closer to getting the sequence right.

Here’s a very small and practical example.  Pumpkin pie is the dish that is always mine to make and I love trying to make it.   I have been taught many steps to simplify making it — one is by using a store bought pie crust.  Another is to re-write the recipe instructions so that I can follow it as best I can and to make parts ahead of time.    Several years ago, my husband found an easier recipe that has a crushed ginger snap crust and that made it even easier.    But this year I forgot about the new recipe and it was not until I was trying to cook the store bought pie crust that I realized that I did not have the new easier recipe (and the ingredients for it).    This may seem like a very small thing.  But what I have learned is that a small thing can make a huge difference with managing  my persistent symptoms.   And this example, of forgetting what I did to improve things in a previous year will happen in about ten or maybe 20 times during the holiday week.   Rather than letting it get to me, I have to practice letting it go and being okay with it so that I can continue on.

 

Second, Thanksgiving is the Olympics of sequencing because in order to buy groceries (that I am not used to buying on a routine basis) I need to plan out what groceries we need to buy or that we are taking to someone else’s house.   Then I have to work backwards and get it all on the shopping list.   And I need to remember to adjust the list for how many people our family is cooking for.  So those are three or four discrete steps that I need to be conscious of and try to keep straight:  plan what we need to make or take, make a list, adjust list for how many people will be eating what we make or take, then update list at least once when people are added or subtracted.    Keeping the steps separate and keeping them in order takes me alot of time and energy. And I have to set low expectations for the results.   All these steps may be unconsciously done by most adults, but I have to remind myself to do them as they aren’t automatic for me.

And those are examples of only a few of the reasons why Thanksgiving is the Olympics of sequencing.   Thank goodness, I love the holiday so much that its worth taking on the challenges!

 

 

 

 

 

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