speech therapy

The Value of Revealing My Deficits

aforrest 1 Comment

I attended the Knowbility Contest “Pit Rally” last Thursday to ask questions about the contest to the judges.

(If you haven’t seen my previous posts about the Knowbility Contest to improve website accessbility for non-profit organizations that I have entered my website in, please look at them. (I haven’t yet figured out a better way to reference them, but its on my list for things to cognitive challenges to learn about how to address!))

Several others from the accessibility technology community were there.

I got into a conversation with a woman named Glenda Sims who currently works for a company called Deque Systems.
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A Good Doctor

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I have begun seeing the Doctors that I wasn’t able to see this summer as a result of my medical setback.

This was a daunting task before this summer. I have so many doctors that help me with my health after brain injury and I have a number of doctors for my general health.   I have had to find new doctors after moving to Austin, and I am still getting my team in place.

During the summer, I had to concentrate my energy on getting back my health and functionality that I lost as a result of my dentist not understanding how fitting my mouthpiece might (would ?) effect someone like me who manages persistent symptoms after brain injury.

I prioritized well over the summer.   And I am successfully better and much more functional.

As I think about it, I am actually very lucky that my medical setback did not last longer than it did.
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Re-focusing and binocular vision

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I see it as my job to get better and I am still working (hard) to get back to my baseline before my dental appointment on June 2.   Its been two months now.   Its been quite a struggle.  I have had to use all my resources and have had to find new resources to help me.   But I am getting there.  I think I am at 80% now, which means that in the past three or four weeks, I have made about a 10% improvement.

I would like for my improvement to go faster.   But realistically, I am grateful for that improvement.

My cold/bronchitis is lingering but almost over.

And I have been noticing that my vision and brain are reorganizing this week.   A visual/brain reorganization is about the best thing that could come of this setback.   Yes, I have felt my vision reorganize, and my brain reorganize.   The reason why I say that that is the best thing that could come out of this setback is because when I experience a re-organization, I know that I will get to a more functioning place with my brain once I get back to where my baseline was.

In other words, I will likely be better than I was before this setback.

Getting to a better place does not mean the setback was “worth” it.  It has been a struggle, to put it lightly.  It has taken all I have to give.   And its not over.

What getting to a better place means is that I have made the most of this period of setback.  In statistics, given that I am having a setback, I have ultimately used it to move forward.

Here are the highlights of what I have done this week to help myself:

I reconnected with my former speech and language therapist, Liz Joiner,  who gave me suggestions including some new resources for visual therapy and how my neurologist, Dr Hill, could help me get to visual therapy resources. Since visual therapy has helped me a lot, and since I am going through a visual reorganization, getting professional help with the next step, is definitely something I should consider.  Of course, they would have to do an evaluation to help the professionals decide if they can help me.

Liz also gave me some suggestions for a therapist who understands brain injury to give me some emotional support through this difficult time and who might be able to give me guidance and connect me with other resources here in Austin.

With the help of talking with others, I realized that the antibiotic I was taking for my bronchitis was wiping me out. So I started taking more probiotics.   That really seemed to help my gut — I could feel the difference.  What I have learned is that there are a lot of receptors in one’s gut.  And I have learned that helping my gut can help reduce some of the confusion in my head that I feel when I am sick and taking antibiotics.

How did I know I have begun having a visual reorganization?  My eye doctor in Washington DC, Dr Franke taught me how to recognize them.  One way that I recognize a reorganization is when I all of a sudden can see depth in a way I could not see it previously.  Its like flowers all of a sudden “pop out” with depth, that I didn’t previously see.

After my brain injury, I had depth perception issues.   What I know now is that I also had less than full monocular vision prior to my injury.  One of the benefits of doing vision therapy after my brain injury is that I have started to get back increased binocular vision and that the increased binocular vision that I am getting will make my vision system better than it was before my injury.

I want to be talking more (in my blog) about the benefits I have gotten from vision therapy in my recovery from brain injury.   For now, I want to say that Dr Susan Barry talks about her experience of getting binocular vision in her book “Fixing my Gaze”.   Dr Barry is a neurobiologist.  She understands the brain and brain development.  She describes getting binocular vision as a journey into seeing in three dimensions, in her book.   Actually, Dr Oliver Sacks first wrote about her journey in The New Yorker Magazine,  He called her “Stereo Sue”.   Dr Sacks was interested in writing about her story because getting binocular vision later in life is something doctors did not used to think that you could do.  And she did it as a result of finding vision therapy and optometrists who knew how to help her.

To finish this post, I also had the insight this week that I needed to let go of all the things I had planned to do in June and July that I have not been able to do so far.  I have been to sick to do them.

One of the things I did this week was start to re-focus on what I need to get done this month before my son’s school starts.   So my re-focus moved to a forward-looking strategy from a catch-up strategy.

And I also consciously worked on rebuilding this week.   I used Andrew Weil’s strategies of improving my surroundings to help lighten my mood and make me smile.  I bought flowers at the store and bought a sage plant with beautiful leaves to put by the sink to remind me of my new increased depth perception.   And I bought basil and made basil pesto which I love.  I started investing in the future, which is a good sign that of recovery for me. There is a point in recovery where I start feeling ready to invest in the future, and I have reached it.  I know that getting to the point of re-focusing and investment is a marker that my recovery is taking hold.

With my new vision for the future, its easier for me to get support for this last phase of my recovery back to or still hopefully surpassing my previous baseline.  Both from the inside and from others.

Yahoo!

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Emotion affects cognition

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I am still recovering from the setback I had following my dental appointment.   Its been a tough week, partially because this setback has been going on since June 2, so almost 6 weeks now, and that means that I am tired of being outside my routine, and those around me are also!   I was ready to be back to my baseline weeks ago.

Its also been a tough week because I have been feeling alot of grief because of two recent deaths.   What I did not know when I first had my injury, and what I was taught in rehab once I finally got it, is how much emotions affect one’s ability to think.  With an injured brain, I have learned many skills around feeling my emotions and understanding how they will impact my injury.   I have learned many coping strategies.

In my case, it is my grief this week (and last) that is making my brain functioning more difficult for me.  However, both depression and anxiety are secondary responses to brain injury in my case and I have been having to cope with these as part of my setback.   I have learned that these secondary emotions of depression and anxiety that go hand in hand with reduced cognition affect my ability to think and use my cognitive skills of attention, memory, planning and executive functioning.

On Sunday night, I learned that my high school friend’s Dad passed away and that his memorial service was on Monday.   I wanted to go and I was the only member of my family who could attend.   My family and my friend’s family spent alot of time together because of my friendship but also because my brother was the same age as my friends brother and our mom’s became close also.  When my mom became sick with cancer, my friend’s family was a vital part of our support network.   In addition, my friend’s Dad was a doctor and I had gone to see him for medical advice (and shots!) for traveling to Peru when I was younger, so I knew him not only as a Dad but also in his profession.

I have also been grieving for a young woman, Ann Zeis, who I have written about on my blog.   Sadly, she passed away over the 4th of July and her family and friends reached out to let me know.   Ann was helping me on my blog, and had inspired me tremendously as we had common interests.  I am going to write a special separate blog post on her inspiration in my life tomorrow.  Ann died in San Francisco where she lived, so I have been struggling with the profound loss of her life from afar.

I attended the memorial service for my friend’s father which was beautiful and reminded me of many times in my life that I spent with my friend’s family.   I went to talk with my friend afterwards.   I mistakenly thought that the handsome man standing next to her was her brother, who like I said, I knew well in high school.  We had about a 5 minute conversation the three of us.   I then said that I had a doctor in the same building where my friend’s brother works.   Since the person I was talking with wasn’t who my friend’s brother, and in fact lived in Houston not Austin, and was someone I went to high school, he retorted his surprise that I would have a doctor in his building in downtown Houston.  I realized at that point that I was confused.

I laughed at myself.   My friend later told me how well I dealt with the situation–that laughing was just a great way to deal with it.   It has taken years to learn to laugh at myself when my brain just isn’t quite there.  Its taken years to be flexible and give my brain space when it needs it.   This setback–and the increased confusion and cognitive deficits that it has brought–has really made me have to draw on these coping skills.  Its also made me appreciate that although I did not have these skills when I first needed them after my injury, I have them now.   And I need them to make this setback as short as possible and I have incorporated them in my everyday life so they help me in my daily life too.

Years ago when I spoke for Dr Paul Avarich’s class at Eastern Virginia Medical School in Norfolk, Virginia, it was my laugh that Dr Avarich wanted his medical students to appreciate.   Dr Avarich is a neuroscientist by training and he taught a first year class on neuroscience to his medical students.  I had met him when he did lectures about neuroplasticity at an annual conference at Williamsburg.  I wanted to know as much about neuroplasticity as possible because I wanted to keep getting better.  Years later, I traveled down to speak to his class.  And he pointed out to his students that being able to laugh when I made mistakes or when I did not know what to say (which was often following my brain injury) was a tremendous coping skill.   I now have a deep belly laugh and, as he pointed out, it really lightens up a situation.

I have counseled many after brain injury that letting go of situations where the brain isn’t working and allowing it to be okay that one’s brain is doing what it is doing, will help make life easier after injury.   I know now that my brain being confused or doing what it is doing is not “me”, its just my brain not feeling so well.  I also know that my brain (functioning) will get better the less feelings that I attach to my brain being confused.   It is what it is.   And that I will be able to think better the more that I take it “in stride”.

So that is the challenge of this week.  Dealing with my grief for the death of two lovely human beings who have contributed greatly to my life and allowing myself to feel my feelings of grief.

And at the same time deal with the effect that my grief is having on my ability to recover after my setback.

Its okay.  I need to feel my grief, and feeling my grief, although it may temporarily increase the difficulty of dealing with my setback, is what it is.  All that I can bring to this process is the awareness that I now have about what’s happening with my brain.  And at least I have that, now!

I need to get off the computer so I will publish this as is.  When I am better, I expect to come back to these posts and edit them, but for now, they will have to be as they are.

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Compensatory strategies and Deadlines

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One of the great things about writing my blog is that it is forcing me to identify what stands in the way of writing my blog posts.   I have learned in Rehabilitation that the first step to resolving a problem is to be able to identify the problem is that is challenging for me.  Then I can work to come up with compensatory strategies to resolve the issue (work around it) or I can ask others for help to figure out a compensatory strategy to help me get around the problem.

I want to point out that last week, I had to come up with a compensatory strategy sort of at the last moment and I did!   Looking back, I am pleased with myself about that.  I so wanted to finish the post I had planned and get it out. Instead I came up with a strategy when things did not work out as I planned.   I realized I just had to explain what I had tried to do and wish everyone a Happy Memorial Day and be satisfied with that.

Last week was a short week for us because we were leaving early for the Memorial Day Weekend and we were traveling (which, in short, means a lot of extra preparation and cognitive steps for me.)   I had looked ahead and made plans to get my blog post done early so that I could post it.   I had started writing my on Tuesday, as far as I recall anyway.   And I had scheduled time into my calendar on the Wednesday in order to finish my draft before we left on Thursday morning.  All was going well so far.

To explain this further, I am going to step back a moment and say that what I have learned in rehab is that planning and figuring out how to meet a deadline are all “executive-functioning” skills.   I have had to relearn executive functioning skills as part of my speech and language therapy and I was lucky to have some very good therapists who have helped me.   And before I could even begin working on executive functioning, I had to do a lot of work on attention and concentration with my speech and language therapists.   What I did not know before my rehabilitation was that attention and concentration  are important skills underlying executive functioning skills.   My vision therapy has also helped me with these skills.  While I still cannot describe how, I know that they have.

My executive functioning skills are much better then they were because of my rehabilitation.   Some of these skills are more automatic now.   When I say they are more automatic, it means I do not have to think about them and line them up consciously, they happen by themselves (again).   Like when I used to get in my car and drive before my accident, I didn’t have to think about the steps of driving my car.   I did not have to think first I put the keys in the ignition, then I put the car into gear, then I adjust the mirror, then I back out of the driveway.  I just did all of those without thinking.  That is what I mean when I say that they were “automatic” before my accident.

Suffice it to say that how my brain worked was not automatic after my accident.    I had to relearn many steps that most adults do without thinking.

Back to my last Wednesday and trying to meet my deadline of posting my blog with the skills I currently have.

It used to be that when I was not quite done with a deadline, my brain could figure out how to resolve a problem in a limited time and resolve it without me having to consciously think about it.   I still remember the brain that could do that.   Because of rehabilitation and a lot of practice since rehabilitation, I have to consciously remember that as much as I would like to be the person that could automatically resolve deadline issues, I am not that person anymore.   That means that I have to find a way to resolve the deadline issue that incorporates my current abilities around deadlines.

So I was pleased with myself last Wednesday when I realized that I needed to just wish everyone Happy Memorial Day! as a solution to not quite having the executive functioning skills I needed to finish my post and get the other things I needed to get done that day.

What compensatory strategies do you use with deadlines?

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Comprehensive Management of mild TBI

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Two weeks ago, I wrote about my new friend who is trying to get medical help in understanding her symptoms that she suspects are related to multiple falls and the empathy I felt for her after my own difficult search to find the help I needed to recover after my symptoms following a car accident in which my head went from side to side and back to forward.

I want to post some information that I heard on Webinar sponsored by the Brain Injury Association of America.   The Webinair was on Comprehensive Management of Mild TBI by Dr Kevin Crutchfield, MD and Dr Jessica McWhorter, PhD.  Dr Crutchfield is the Director of the Comprehensive Concussion Program and Director of the Noninvasive Vascular Laboratories at Mt Sinai Hospital of Baltimore and Dr McWhorter is a Rehabilitation Neuropsychologist at Berman Brain and Spine Institute also in Baltimore I believe.

Before I post more, I want to say that I am a big fan of Dr Crutchfield.  I attended a seminar that he was also a participant in, and I introduced myself to him because I was so impressed with his questions for the speakers.   Later, when I had another concussion (after the concussion that changed my life and livelihood), I traveled up to Baltimore from Northern Virginia to see him for a second opinion when I my new symptoms were not resolving.   He validated the need for a new sleep test and had several other suggestions.  His referrals helped my life enormously.   And he has helped a number of people that I have sent up to Baltimore, for a second opinion, in life changing ways.

I also want to say that he is by no means the only doctor that does comprehensive care for mild traumatic brain injury.   I am posting because his webinair had slides that said what comprehensive care is.  Since I had so much trouble getting to comprehensive care, and since I meet so many people who do not get comprehensive care initially–or who, like me, do not even know what comprehensive care after mTBI is– I wanted to post what it is.

This morning I heard the statistic from Dr Cheryle Sullivan that roughly 80% of people with TBI don’t get to treatment at all.   Much less comprehensive care.   And many people that I meet, thought that they were getting comprehensive care when they went to their doctor, because surely their doctor knew about concussion.   Later they found out, when they are not getting better, that they may not have gotten all the care that they needed.

One of the many objectives of the Webinair was to identify the essential elements of a comprehensive approach to mTBI.

I want to include information from the medical part of the discussion in this post.   I wish that I had had a comprehensive evaluation when I first had my injury in 1997.   Brain injury treatment has advanced tremendously since that time.   When I think about what I wanted to know it was what comprehensive treatment for mTBI was.

So here in 2014, I want to know that I have stated what I believe is good information about what to look for in treatment.   I struggled many years with symptoms that I believe I would not have had to struggle with had I gotten to comprehensive treatment early on.   I believe I am correct about making that statement because when I finally got to most of the treatments discussed, they helped me.   Earlier treatment is thought to be more cost-effective and faster than later treatment according to researchers.

I also want to say that many of the people that I meet through my public speaking and through my advocacy have not been evaluated comprehensively and are grateful for knowledge of what kinds of diagnoses have been helpful to my recovery and others, and what kinds of treatments are available so that they can recover further and move their lives forward as best as possible.

In the Webinair, Dr Crutchfield, a neurologist by training,  presented and discussed the following information:

Diagnostic evaluation should include:

-concussion scale

-neuro-ophthalmology (which includes vision therapy (added from my notes by ASF))

-referral to a mTBI program

-sleep test and referral

–physical therapy

–speech therapy

–cognitive therapy

–EEG

–Imaging

Source: Comprehensive Management of Mild TBI, slide number 22.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

My layman’s understanding of a diagnostic evaluation is that the Doctor should consider all these possibilities and should pursue evaluation if the symptoms presented warrant it.   For example, an EEG might be done is seizure is a possibility but not done if seizure is not a possibility.

Since I am translating this information for the non-medically trained I want to present a second slide about what is treatable.

The slide is:

What can we Treat?

When rest alone provides no relief.

–sleep disturbance

–headaches

–visual disturbance

–mood alterations

–behavioral alterations

–vertigo

–imbalance

Source: Comprehensive Management of Mild TBI, slide number 28.   Dr Crutchfield, Life Bridge Health and Mt Sinai.

I will reach out to BIAA to find out is the Webinair is available for viewing and how one views it.   I reached out to Drs Crutchfield and McWhorter about their webinair last week and I hope to hear back from them.  I have questions for them and I will report back.   And in my next posts, I will post more about the concrete ways that comprehensive management would have helped me.  I also want to discuss that comprehensive management of mTBI by doctors and health professionals is also a goal of the Ontario Neurotrauma guidelines that I have posted earlier.   www.onf.org.

 

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My Return to Work after concussion/mTBI story

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The topic for the Congressional Briefing for Brain Injury Awareness Day on Capitol Hill on March 12, 2014 was Return to Work.

I cannot wait to hear what the Briefing Panel Members had to say.   Of the panelists, Jim Kelly, from the National Intrepid Center of Excellence at the United States Department of Defense, is one of my all time favorite researchers/clinicians, and I find his research and insights so helpful in general, but it has helped me to understand my experiences after my concussion.    I volunteered at the International Brain Injury Assocation’s meeting in the Washington DC area several years ago just so that I could hear Dr Kelly speak.  It was well worth it.

Since “Back to Work” was the topic at the Congressional Briefing this year,  I thought I would write down my (ongoing) return to work story after my mild traumatic brain injury/concussion.

First, I want to mention a little history about speaking and and writing and the Congressional Briefing.    I was the first individual with a brain injury to speak at Brain Injury Awareness Day in 2011 and I spoke about the Value of Rehabilitation.   (Survivors from the military and a former pro-athlete and survivor, Chris Nowinski, had spoken in previous years.)

Preparing that speech with the capable help of Leila Afshar who worked patiently and tirelessly to help me figure out how to tell my story about my journey to rehabilitation.   She modeled for me (through alot of trial and error) how to distill my story.    We had 4 minutes to tell the story of The Value of Rehabilitation in my life.   My speech, and the standing ovation that I got from it, moved my advocacy forward tremendously.

Since then, I have had more practice on trying to emulate what Leila helped me learn how to do — distilling the important parts of the my story.   Working on the blog has helped me write shorter pieces.  It has helped me learn that I often think I have one thing to say and its really about 5 topics.   And that I need to unpack what I think is one post into the different parts.

My return to work story:

I did not expect my injury in a car accident to lead to any work loss.  I had my life to lead and my research to do.

When I was diagnosed with a mild TBI by my neurologist 3 weeks after the accident because I was having symptoms, I still thought I could rest and return to work.

I got to two helpful therapies early on my own — chiropractor help and work with an optometrist who did vision therapy.   I could not absorb what I was reading and knew I could not work if I couldn’t read.

It took me three and 1/2 years to get to the brain injury rehabilitation in an outpatient setting.    I still cannot explain all the reasons why it took so long.   I know it still happens today.

Brain injury rehabilitation turned my life around.   It was complimented by the chiropractic work and the vision therapy I was already doing.   Outpatient rehabilitation gave me more hope that I could return to some kind of paid employment.

During outpatient rehabilitation, my speech therapist, Liz Joiner identified giving speeches as my one “transferable” skill from my old job.

She also helped me start an unpaid internship in Dr. John Slatin’s office at the Center for Technology and Learning at the University of Texas (now the Accessibility Office at UT).

I got married and my husband and I moved back to DC for Michael’s job.

I met Carol Bray at Trisha Meilli’s book-signing for her book “I am the Central Park Jogger: A Story of Hope and Recovery.”

Carol Bray helped me meet Susan Connors (now President and CEO at the Brain Injury Association of America, then at an organization called NASHIA).

Susan introduced me to Robert Demichaelis, a survivor and volunteer at the BIAA office.

I went to visit Robert at BIAA.   He told me there was an extra desk in his office.   He told me I could use that extra desk.

I was so excited, I did not know what skills I had for return to work yet, but I had a desk to go to!!!   That was a start.

I started volunteering at BIAA.   Just getting to Tyson’s Corner, Virginia which was about 40 minutes from my house in Arlington Virginia was about all I could do for a long time.

Learning what to say in the office for small talk was another still I had to learn.  When someone asked me how my weekend was, I needed to learn what to say.

When BIAA help a State of the Art conference on TBI, I asked Dr Allen Bergman, then-president of the Brain Injury Association of America (BIAA)  if I could speak at the conference.   He was looking for someone who hadn’t had treatment in first two years and then got better after treatment.   That was me!!!!

At the conference I learned about how difficult it could be to return to work after even a mild brain injury.   I cried when a researcher talked about the data on the return to work success rate for people with coma versus concussion/mild TBI.    I cried because I thought it was just me struggling against all odds to get appropriate treatment to to go back to work.  If you believe the data, it was not just me.   People with concussion/mild TBI had lower return to work rates than those who had overcome coma.

Later when I was successful getting off the waiting list for Brain Injury Services of Northern VIrginia, a case mamnagement group, they helped me with basics that I still needed help with .   I was roughly ten years out after my injury.   They helped with getting transportation services (I had been trying to take the bus and often got lost or got off bus in wrong or dangerous places).

They also helped me with other services that I needed including support services for me and my family.

Long story short,  I learned that I could do meaningful volunteer work and continue my public speaking to help others with brain injury.

I realized that although my goal was to return to work, I needed to get appropriate health care and support services before that could happen.

It wasn’t that I thought I could skip the necessary steps to support my work activities, it was that I didn’t know any better about the steps that had to happen.

 

 

 

 

 

 

 

 

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The Value of Rehabilitation

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I spoke at Brain Injury Awareness Day 2011 in Washington DC.    I was the first civilian (non-pro athlete)  survivor to speak at the Congressional Briefing.  I received a standing ovation.

Other briefing panel members included: Brigadier Richard W. Thomas, Army Surgeon General; Colonel Jamie B. Grimes, Director Defense and Veterans Brain injury Center; Kathy Helmick, Deputy Defense Centers Excellence for Psychological Health and Traumatic Brain Injury; Patty Horan, Wife Of Wounded Warrior Captain Patrick Horan; Dr Lisa McGuire, Research Team Leader, Division of Injury Response, Centers for Disease Control and Prevention;  and Dr Allen W. Brown, Mayo Clinic.

Here is my Statement.

I was introduced as Dr. Anne Forrest, TBI Survivor and Advocate, formerly Senior Economist at the Environmental Law Institute.

The Topic for the Briefing was The Value of Rehabilitation and the Road Ahead

 

I’m a survivor of traumatic brain injury. I’m honored to be here. I’m up here representing 1.7 million people who get TBI each year and are correctly diagnosed in the emergency room with TBI. And I’m  also representing more than 1.7 million more people who are either NOT correctly diagnosed in the ER or who never make it to the ER. I’m in the latter category. Combined, that’s more than 3 million, or one out of every hundred, Americans who get TBI each year. Some get rehab, some don’t. Some get better, some don’t.

 

In representing this population, I know that I have big shoes to fill, but I have worked hard to have the skills to fill them.

 

I’m going to tell you about my accident and recovery. If there’s anything I want you to know, it’s how much I needed rehab, how astoundingly difficult it was to get it, and how dramatically it changed my life for the better once I got it.

 

Prior to my injury, I got my B.A. at Yale and my Ph.D. from Duke, and I came to Washington to work as Senior Economist at the Environmental Law Institute. I was a varsity athlete and an Ivy-League champion, still played competitive sports, and had an active social life.

 

I was rear-ended in a car accident in 1997 by the Lincoln Memorial. I was coming across Memorial Bridge from Virginia and merging into Rock Creek Park. My head swung from side to side and back to forth. Neurons in all areas of my brain were either stretched or broken. I drove away from my accident.

 

After my accident, unbeknownst to me, I had a second grade math level, third grade language skills, word finding difficulties called aphasia, attention and memory issues, confusion, tremendous fatigue, and irritability. I couldn’t absorb what I was reading, and I had difficulty with social cues.

 

What troubled me most about my symptoms was that I would get over-stimulated in normal environments. The over-stimulation would lead to sleep problems, and I’d find myself in a downward cycle with worse cognition and a depressed immune system. I was working really hard to keep my life from going from terrible to worse.

 

My journey to rehabilitation was long, exhausting, and often quite depressing. I was diagnosed within six weeks, which was very lucky, but I had tremendous difficulty getting to rehabilitation. My first rehabilitation was actually with an optometrist who helped me with vision therapy because I couldn’t read. That was tremendous but not enough. It took me three-and-a-half years to get to appropriate rehabilitation. That’s almost the time it took me to get through college. I got attention, memory, speech training, and executive function training. Known as cognitive rehabilitation, these are the building blocks of thinking. Rehab began a slow and steady path to recovery that eventually turned my life around.

 

Because of rehab, I can read, I can watch fireworks, I can follow the plot of a movie. But most importantly, rehab gave me five gifts for which I’m most grateful.

 

Because of rehab, I have more independence and am in charge of my own life. I use my cognitive strategies daily. I must use them or else I cannot function, and I function with lots of support from my husband, friends, and community.

 

Because of rehab, I have my smarts back. Vision and cognitive therapy allowed me to manage my cognitive issues so I could think again, and my economics training came back. I had worked so hard to get my training.

 

Because of rehab, I learned to take care of myself well enough to be able to take care of someone else. I’m a mom of a two-year-old now, who’s truly the joy of life for my husband and me.

 

Because of rehab, I have something you are watching right now. Rehabilitation gave me the groundwork for rebuilding my ability to speak publicly. It was in rehab that I learned that public speaking was the only job skill I still had.

 

When I first spoke, I didn’t know what I was saying unless I was reading it. Now, I can look at my audience.

 

I was told repeatedly that I would never get better after two years. And yet, except for the vision training, all of my other rehab and all the gifts that came from rehabilitation came after two years. Because of rehab, I’ve witnessed my brain’s ability to change, restructure, and re-wire. This is called neuroplasticity. Neuroplasticity is incredibly powerful.

 

Without rehabilitation, I don’t know where you’d find me, but possibly I would be in some gutter. The phrase “There by the grace of God go I” means a lot to me.

 

As a result of rehab, I’m a wife, I’m a mom, my life is meaningful and productive, I’m giving this speech, and I know all about neuroplasticity.

 

I have a PhD but I’m not a researcher now. Honestly, that’s a little hard for me as I sit here on this panel today with other PhDs and MDs. I will always wonder where I’d be if I had gotten to rehab earlier.

 

But I can tell you that rehab dramatically improved my life. It changed my life for the better, unequivocally and uncategorically. Notice that I’m able to use the big words now. Rehab has given me a meaningful and productive life back.

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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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