4yrs; Day 1794 – first day eval
Hi Everyone,
Corey’s first day at the Carrick Brain Center was filled with intense testing.
She began at 11am with a VNG test (Videonystagmography (VNG) evaluates the movements of the eyes as they follow a moving target or as the head is positioned in different directions in order to locate functional or cognitive brain impairments in the vestibular system and the associated vestibulo-ocular reflex.).
Corey sat in front of a large screen monitor wearing goggles that had a camera attached to view/record each eye. A “cross target” was centered on her pupil. The cameras were wired to a computer. Corey was instructed to look for a yellow dot on a black screen. There were going to be several different tests moving the target up/down and left/right with varied speeds. There were two rules; 1-don’t move her head only her eyes to follow the dots motion and 2-try not to fall asleep (the young technician was actually quite funny. He set the expectation and explained each direction clearly. Corey was at ease with him).
A second series of tests consisted of a BRIGHT blue screen with yellow lines that moved rapidly both horizontally and vertically. (this test caused a bit of anxiety for fear of initiating a seizure but Corey handled it well)
The results were immediate and not surprising. The impact of the initial injury was to her right. The force of the impact caused her brain to move left, right, front, back and spun within the frame of the skull. This is called DAI; diffused axonal injury with a global sheering. The axons were severed from the force of the hit. Here’s where it can get confusing…the right side of the brain controls the left side of the body. Corey’s injury was worse on the right side which is why her left side is still weak and slower to strengthen. What we learned today was the force of the impact also affected the center core of the brain as well. This information is not new but it was thoroughly explained to us for the first time.
Corey’s vision test showed her eyes move in a smooth direction from left to right, but the motion from right to left caused several breaks. The eye actually moves in short spurts as it tries to move left. It pings or ratchets back and forth rather than smoothly transitioning. The muscle is trying to move left but the brain is sending the signal to go back to the right.
This will be the first critical hurdle to overcome. Why? It was explained to us that this information leads the team to the vestibular center of the brain at Nerve 8. The vestibular is typically known for balance. You can’t walk before you can stand and you can’t stand if your eyes can’t focus and your inner ear fluid is compromised! We also learned that this nerve is one of the primal nerves developed in the womb. In addition, this area also regulates blood pressure and oxygenation to the brain as well as balance.
Corey’s next session was cognition tests. This part was very unsettling for both Corey and me. Corey had a series of exercises on a computer to track long and short term memory and timed responses. Good news Bad news.
Good news;
Corey remembered how to use the desktop mouse and could independently read and answer some of the questions when the font was large enough.
When I read the instructions for each sample exercise, she scored perfectly.
Bad news;
If I did not read the instructions, read the list of flashing words, random sketch drawings and color sequences, she failed each independent exercise.
It was very, very upsetting to sit and silently watch her struggle. Her memory loss, extremely slow processing and response time, plus her mental fatigue caused her to become frustrated and feel defeated. She was unable to complete the tests. At one point she leaned across to place her head on my shoulder and verbalized her struggle. It nearly broke my heart to hear the words she used to describe how she felt about her inability to perform the exercise. The tests were aborted but fortunately, the team quickly adapted. The tests could be completed with a one-on-one approach using auditory questioning as well as the use of manipulative’s.
Corey’s day closed with an evaluation with Dr. Ross and Tram, his technical assistant. Dr. Ross’s evaluation lasted almost 2 hours. We reviewed Corey’s history, the intake forms, the test results, physical and neurological exam, and the initial plan for the upcoming week based on today’s results. There will be a 4 component plan to begin her program. Each component will work towards the initial list of goals from our first Carrick post. We will write about each component as she uses them in each upcoming session.
Side Note; when Dr. Ross reviewed Corey’s history and rehab to date discussing all her accomplishments, he turned to her and commented, “Girl…you are bad ass!” Corey looked at him surprised at first but then smiled and owned it! It was one of those rare moments I will never forget.
Tomorrow Corey starts at 9am for Session#1. At 11am she will be meeting with a metabolic specialist. At 2pm she will close the day with Session #2.
Day 1 complete, xoxo
4yrs; Day 1792 – headed to Dallas Texas
Hi Everyone,
Well, our bags are packed and we’re ready to go to Dallas, Texas!
Many of you have asked how we prepare for a trip like this. Needless to say, I won’t go into every detail but it takes a great deal of organization to prepare for the unexpected…here are the highlights.
Corey and I will be sharing one large rolling duffle bag for the week that we will check at the curb when we arrive. (this is a huge improvement from the days we used to travel with 2 large duffle bags. 1 for medical supplies and the other for clothes, diapers and spare bed linens + my luggage).
Disabled individuals have some challenges to work with when traveling; however, a personal conversation with both the airlines and the TSA department at the airport helps to make the travel experience much easier.
A TSA agent will meet us at the security checkpoint. Because Corey has a VP Shunt, she cannot go through the xray machine. She and her wheelchair will have a private screening. We have all her medications, a personal water bottle, daily injection syringes, blood pressure machine, seizure shot and personal documentation in a backpack that are permissible and will be privately screened as well. Typically, Caitlin and I will go through the security checkpoint as usual and join Corey as she will be escorted through a separate area with the TSA agent assigned to her. Corey’s sightline of Caitlin and I will remain intact until we meet her on the opposite side (extremely important for her separation/stranger anxiety)
Once through security the TSA agent escorts us to the gate. At that point the gate agent takes over. Corey will be first on and last off but this trip, once Corey is wheeled down to the plane, she will stand and walk on with her sister. I will break down and secure her folding wheelchair to check it with the gate agent. Our last trip, the airline damaged Corey’s wheels and brake handle to her chair. This trip, I found a padded carrier cover online that secures all the chair parts for easier, safer transport. I purposely booked seats with plenty of leg room close to the lavatory for our 4 hour flight.(and if you’re wondering, Corey and I can both fit in the lavatory with the door closed…thank goodness!)
Once we land in Dallas, the girls and I proceed to the baggage claim with everyone else. We then find the rental car agency. Our last trip we needed to rent a handicapped van. This trip, we rented a standard SUV. Corey rides shotgun, Caitlin has the backseat and the wheelchair is in the trunk!
Corey was talking about the upcoming week. She is excited and nervous. There were moments she regressed emotionally not fully understanding the timeline of her healing and what her future holds for her. She was so upset at one point she voiced her anger and resentment at the driver that hit her. There are times words of comfort aren’t enough. Some days this road we travel seems to be never ending, yet every day we do the same thing…take the next step.
The important issue right now is not what has already happened or who is to blame for it. The important thing is to take the next step.
The goals Corey has reached are a direct result of continuing to take the next step; fighting through the concept that we will be doing this for as long as necessary.
The next steps we take with the Carrick Brain Center are no different than the steps we take every week at Bryn Mawr Rehab. Every step for Corey takes real work but in exchange for that real work, she continues to regain a piece of who she is and who she will become.
We will post a message everyday on the carepage and on my facebook page (Marie Palamara Beattie). We will let you know how and what Corey is doing and what she has achieved each day. If we permitted to video and/or take photo’s, we will post them on facebook and attach a link to our youtube page as well.
We made a pact almost 5 years ago, Corey. We promised we would work everyday to help your recovery; together, we will never give up and never give in because you will realize your dream of becoming a Chef.
“Three simple rules in life: If you do not go after what you want, you’ll never have it. If you do not ask, the answer will always be no. If you do not step forward, you will always be in the same place.”
― Anonymous
Tomorrow is another ‘next step’. You have overcome thousands of obstacles because you follow those 3 simple rules. Your determination, tenacity and sheer ‘will’ has helped you to get to where you are today and will guide you towards where you are headed tomorrow. We all can’t wait to watch you take every next step! xoxo
4yrs; 10 months – our “next” step
Hi Everyone,
Good news-Bad news…
Good News; Corey’s been making tremendous gains with her cognitive specialist. She has been increasing her response speed and length of concentration time working on the computer playing her ‘brain games’. The brain game exercises have carried over and are reflected in longer and more frequent spurts of ‘clarity’. She is becoming more ‘aware’.
Bad News…Corey’s becoming more ‘aware’.
Corey has been on an emotional roller coaster primarily because of the intermittent moments of clarity. Her perception of her current world challenges both her short term and long term memory. Those of you following Corey’s story for 4 1/2 years know what happens when this occurs…the return of Corey’s evil twin – Corrine. Corrine brought Anxious Annie with her and Annie is an insomniac! It’s been very, very difficult living with the return of Corey’s imaginary multiple personalities but I must say, when she calms down her reasoning skills during her moments of clarity reveal an advanced level of cognitive and emotional thinking.
I know it’s been two weeks since our last post and that worries many of you. (Honestly, this recent “regression” has caused me to be a little worried, too).
As you all read our update, please don’t be discouraged. Although the term Bad News often refers to regression, it is in fact all relative…perspective helps to change its definition on our rested days. Corey’s insight, executive reasoning and emotional intellect is developing. She is more and more self aware. On the days we are all sleep deprived, Bad News reminds us we still live, breath, eat and don’t sleep with Brain Injury.
In therapy, Corey is walking further, standing straighter, increasing her balance and is walking with a traditional cane 90% of the time she is up and about. Last week she received Botox in her left arm only. Her left leg is stronger and she has maintained a functioning range of motion in her toes and foot and for the first time in 2 1/2 years, she didn’t need it in her left foot. Her left arm gains range of motion and her fingers are much more flexible after botox. We have been learning scales on the piano which has been helping her control over her left hand and strengthens the individual mobility of finger.
In the kitchen, Corey and I collaborated on a new gravy for meat and/or chicken. A Horseradish Mustard Mushroom gravy. I have to tell you, it’s even better the day after!!
Corey is also researching other recipes as we work on her cookbook. Last night, she thought of an apron and stationary she wants to design as well. Her apron would say; “Cooking up an Appetite” and her note cards for her personal stationary would say “Cooking up a conversation with Chef Corey”…I think she’s onto something as she brands her company.
Corey continues to evolve, which is a miracle (and we don’t use that term loosely). She has made great gains but as you all know, the goal is full recovery. We understand with the level of her initial injury she will never ‘fully’ recover. That being said, we will continue to find every resource possible to help her regain the maximum functional recovery for her to realize her dream of becoming a Chef.
Our next resource; The Carrick Brain Center in Dallas, Texas.
I went to Dallas, TX in mid July to meet the owners of the Carrick Brain Center.
(www.carrickbraincenters.com)
They specialize and treat diseases and disorders of the brain and central nervous system. (their website will best describe their practices and unique therapies)
Dr. Cagan Randall and Dr. Brendan Brock sat with me for more than an hour. We discussed Corey’s initial injury, time in the ICU, her inpatient stay at Bryn Mawr, progress during her first year at home, her second inpatient stay, and her progress over the last 3 years of out-patient therapy. I added in January, we’ve not only changed her medications, we’ve also added Neuro-behavioral and cognitive therapy to her regimen.
Dr. Brock first stated that if we came to him 1.5 or 2 years ago, they would not consider working with Corey. In light of the progress she’s made (physically and cognitively) especially since January, they are very excited to work with her. They don’t typically see a survivor (with her initial level of injury) improve with consistent and significant gains 5yrs post injury.
They explained further:
Initially, Corey had a global injury – in addition to her physical fractures, every part of her brain and spinal cord was injured.
For the last 5 years, she has been receiving global rehab. That means, we have been treating every part of her body at the same time with PT/OT/ST.
Many parts of her brain and body have healed.
Their belief is, as the brain heals and the person progresses, the therapy must become more focused and more specific.
An evaluation and individualized therapy program will target the parts of the brain that have not yet responded and/or healed as quickly as the other parts that have been reactivated.
We listed goals (set by Corey and our family) for initial targets.
-walking unassisted
-speaking more clearly, finding words
-stability with anxiety and behavior
-use of her left arm
-fatigue w/concentration, focus to task
-sleeping through the night
-improving memory
and processing
Specifically their thoughts with a home program + skype sessions post initial eval using a 3 month course of therapy over a years time…
-walking unassisted – PROBABLE
-speaking more clearly, finding words – PROBABLE
-stability with anxiety and behavior – WILL TAKE TIME
-use of her left arm – WILL EVALUATE (not sure it will come back to full function)
-fatigue w/concentration, focus to task – WILL HARMONIZE EASILY
-sleeping through the night – WILL TAKE TIME, MAYBE A YEAR
-improved memory and processing – WILL IMPROVE A LOT and QUICKLY
They feel their program will help her improve 20% within 3 months.
Dr. Brock added, nothing is guaranteed with the brain, but depending on the most important part of this puzzle – Corey’s Brain Tissue – with a customized therapy program, she could get back 70% of what she had before the accident.
Their team evaluated her chart, MRI and CT films, all her current doctor reports and accepted her into the program.
Caitlin, Corey and I will be heading to Dallas on August 30th. Her evaluation begins August 31st – September 4th. The days will be 3 sessions per/day, each session is 1.5hrs long (if she can handle it). We will head home on the 5th.
THIS CENTER IS NOT COVERED BY INSURANCE.
Corey’s cousins have dedicated their run in the Rock and Roll Half Marathon every year since Corey’s accident as a fundraising opportunity for the therapies, supplies and support services that are not covered by insurance.
The first year TEAM COREY consisted of 7 runners…This year, Team Corey has close to 50 runners. Corey’s cousins, Christy, Katie and Kerri have updated her fundraising page (link attached below). 100% of the funds raised will be dedicated to Corey’s expenses for the Carrick Brain Center over the next year.
This opportunity would not be possible without all of you! Our family of origin, community, and the friends we have met via carepages gives us the encouragement we need to keep moving forward. We can’t thank you enough for your friendship, love and the tireless efforts of so many to fundraise on Corey’s behalf.
Corey, “Someday is coming”. You will walk independently. You will become a Chef and yes, You will run across your finish line! xoxo
4yrs; Day 1749 – Letter to NIKE
Hi Everyone,
Lately time is flying by. We have been very busy with therapy and Dr. appointments.
Corey has had a few more episodes of fainting and we still are not sure what the cause is. We were back down in Washington DC to visit her seizure specialist. He commented that his epileptic patients are suffering a similar pattern. Part dehydration, part weather (heat) related and part…unknown! So we continue to work on good nutrition, sleep and a modified exercise schedule to keep her safe.
A few new exciting changes;
Corey is trying to walk with a ‘regular’ cane. Her balance is improving. (check out her gallery picture) When we purchased her new cane, she commented, “if you have to accessorize, you might as well look snazzy doing it”! She added, “using a cane isn’t very stylish mom, but I think I can rock this look”.
Speaking of stylish…
We saw a video about NIKE creating a basketball sneaker for a young man with cerebral palsy. They invented a velco/zipper inspired by their new Lebron soldier 9 line. It’s called Flyease. The new design gives the person with disabilities the ability to put their shoe on/off independently. I told Corey I wanted to write a letter about her to the CEO Mark Parker, asking him for a sneaker that would accommodate people with a leg brace. She insisted she write the letter, “because mom, its about me being an athlete and wanting to look stylish too”. Not only did she compose most of her letter, she is going through a box of Crayola crayons choosing color combinations for a ‘sneaker design’ as I write this update!
Corey wants you all to know, “I know mom’s goal is to get me functioning as much as possible, but it’s my goal to look as stylish as I can while functioning”…she’s a woman with a mission! xoxo
Here is her letter
July 17, 2015
Dear Mr. Parker
I just watched a video on FaceBook about your company working with a boy named Matthew. You invented a new sneaker to help him put his shoes on by himself.
My name is Corey Marie Beattie. I was in a car accident October, 2, 2010; I was 17. I was an athlete before my accident. I am still considered an athlete as I continue to workout to recover from a severe traumatic brain injury. I am relearning how to walk. I have relearned how to talk, eat, read and communicate. Recovering from a traumatic Brain Injury is the hardest daily workout I’ve ever done.
Your company’s mission statement is JUST DO IT.
My personal statement is NEVER GIVE UP AND NEVER GIVE IN.
My dream is to become a Chef and attend Culinary School. As a young woman, it is also important I look good doing it. I wear New Balance sneakers to accommodate the leg brace I have to wear. I have to buy two different sized sneakers. Left foot is a size 8 for my brace and right foot is size 7. I get so frustrated when I have to rely on other people to help me get dressed. I also don’t like having to wear unattractive shoes. I would really like to wear something ‘fun’ and ‘stylish’.
Can your company please design something fashionable for women that are still athletes despite their disabilities?
Best regards,
Corey Marie Beattie
4yrs; Day 1740 – from corey
hello everyone this is your dear friend corey once again,
i wanted to let every one know that i am fully aware of the shiner on my eye. do not worry about it because the x-ray was all good; no broken bones. mom asked me if i had a headache but i told her compared to the pain on my cheek my head is great!
knowing how i like to accessorize, i picked out a tie die shirt for todays outfit. it was the perfect choice because now i blend.
i am embarrassed about falling off the couch and getting a black eye. mom says i could come up with a good story to hide the truth. so i was thinking about it and will tell everyone that i flipped one burger way to hard and the flipper missed the burger and it hit me flat on my face. what do you think? will they believe me?
alright 🙂 that is all the time we have to write because it is time to go watch master chef, xoxo
4yrs; Day 1739 – another fall; PT/OT and Botox
Hi Everyone,
We’re having a tough beginning to our July. The weather has been terrible in PA and Accu-Weather Corey can feel the change in the barometric pressure everyday. She’s had a headache since last Wednesday.
Corey also decided to test me with a fall today. She was resting on the couch hoping to relieve today’s headache, sat up without me, reached for her glasses on the coffee table, lost her balance and fell off the couch. She fell to her left side, her weaker side, and could not break her fall. She landed on the family room floor bruising her left cheek and her right knee.
We have been applying ice on her shiner and knee all day. We called her Doctor immediately and went to the local imaging center for x-rays to make sure she didn’t do more damage than the multiple shades of purple reflecting off her cheek and under her eye were presenting. The Radiologists report should be back tomorrow but this evening she looked much better, was aware of her surroundings, but she had no idea she fell or why her cheek hurt (amazing how prevalent the memory loss is despite the pain in her cheek).
We have had multiple conversations about her gymnastic stunt and I’ve tried to explain to her if she continues practicing her somersaults, I’m going to need more hair dye!
On a less stressful note; Corey continues to make gains at PT/OT. We are looking at submitting a request for more botox. Corey’s left arm and leg seem to be contracting again. Botox will by-pass the signal blocked by the brain to the muscles in her arm/leg. Once numbed, Natalie and Anne can continue to push more challenging exercises which will strengthen Corey’s muscles. More strength, more flexibility = greater range of motion. In the meantime, we are pushing her long distance walking, balancing, bike riding and (for fun and therapy) we are beginng to learn how to play the piano. Music heals both sides of the brain. It will increase her processing, response time, dexterity and hand flexibility/coordination. All of this will carry over to her ability to be independent in the kitchen which we all know is her main focus.
It has been a very long emotional day. Once again I’m reminded how quickly an accident can happen, especially when I’m not far away! I know you all keep us in your daily prayers, but please add a few extra to slow down my gray hairs! xoxo
4yrs; 9 months – BIAPA conference
Hi Everyone,
Corey and I enjoyed the Pennsylvania Brain Injury Association’s Annual Conference. What a wonderful experience…and yes, Corey received another Standing O for her presentation.
The conference brought survivors, caregivers and professionals within the Brain Injury field together for 3 days of networking and education.
In addition to our session, we heard 2 dynamic Keynote speakers and attended several classes:
-Exploring Meditation and Mindfulness; Techniques and Resources for Cognitive Rehab therapy.
-Nutritional Supplements to Boost the Brain; The role and evidence for Nurtaceutical use
-Cognitive Rehab and OT; ‘Making the Most’ of the Concussed Brain
-Activities for Stimulation of Persons with Low Arousal
-Music and the Brain; Music Therapy’s role in Brain Injury Rehab
One of the prevailing themes throughout the sessions was Meditation. The importance of intentionally taking time everyday to stop and be quiet for a moment or two is a message for everyone, regardless of the injury or illness. We also liked the quote from one of our keynote speakers, Kevin Pearce, “give yourself a daily present by giving others your complete presence”. What a simple yet powerful sentence. How many of us are distracted by the white noise of the day rather than listening, engaging and enjoying the moment?
My favorite part of the conference was watching Corey. This year she was engaged in each session, interacting with others, initiating questions as well as interjecting comments during conversations. During the Music therapy session, the presenter asked for volunteers to come to the front of the room and help act out some of the lyrics. Corey looked at me;
C – I can’t walk
M – that’s ok, we can sit and act out the lyrics
C – no, I can’t walk up there
M – you want to volunteer?!!
C – yes, but I can’t walk up there
M – ok! Let’s roll up
She not only participated in the sing-along, but was part of demonstrating the arm movements that coordinated with the lyrics for Shel Silversteins, Unicorn song. I wish I had a video camera; she was adorable! As we returned to our seats in the back of the room, she was High-5’d by those sitting at the end of each aisle.
Throughout the conference Corey was paying close attention to all of the presenters. I also noticed that she was taking notes for some of the information she thought was important; (side note: unfortunately, she does not recall the conference or her participation but hopefully as we talk about the experience she has stored the memory and it will resurface)
Thinking of this year’s conference brings up many emotions. There are so many days we both feel “STUCK”. Most days it feels as if we’re walking on a treadmill or running on a hamster wheel that is secured to a stationary support…we’re moving forward but not really getting anywhere. We don’t stop pushing and consciously make plans to get out, try varied activities and attend events to break the daily routine. Our motivation – we know we can’t JUST focus on the mechanics of therapy.
Then, when we least expect it, we are given the rare experience that shows us the wheel has not been locked in place. The treadmill is actually more like the moving walkway at the airport. The pace of our stride hasn’t changed but we’ve been moving farther than we realized. What a gift it is to watch Corey’s evolution. Her progress continues to rejuvenate, inspire and motivate us to stay on that moving walkway. She’s going to reach the gate and although the airplanes temporarily grounded on the tarmac, one of these days it’s going to take off and she will definitely be flying solo! xoxo
4yrs; Day 1761 – revised expectations
Hi Everyone,
We haven’t disappeared. We have been looking for new solutions as we work through a very difficult cycle with Corey. There have been many, (what we call) ‘Brain Injury Day’s’.
When the going gets tough…I go searching for inspiration! Anything to help us hold on, change perspective, think out of the box, or find the words of encouragement that will help us navigate this crazy ‘new normal’.
I found that message in the following entry from one of the blogs I read…I hope Abby’s words will inspire you too, xoxo
Revised Expectations – Abby Maslin
Once upon a time I believed I had total control. I was convinced that everything in life is a direct result of choices, actions, and will. I believed in this sense of self-determination so strongly it was as if I had created an invisible (and false) veil of safety, one I believed exempted me from the less than pleasant realities of life. Maybe this is how all young people think, or at the very least those lucky enough to have experienced mostly happy, privileged lives. Or maybe it’s something many people convince themselves of — a protective measure we use to guard against that nagging inner voice that reminds us the world can be a very scary, unjust place.
In either case, there was no doubt in my mind that I was at the helm of my own life, a belief that, in retrospect, made me assertive and productive, but also terribly arrogant. Like many people, I had a vision for how my family’s life would go. I believed that through a series of smart choices and a lot of hard work, we would be guaranteed the life I envisioned. In my mind, this was a foolproof plan. Not only was I confident I had 100% navigational control, I sometimes had the audacity to judge the lives of those I deemed less fortunate. Like a lot of people, I had little awareness of my ego or the sense of entitlement that shaped my interpretation of the world.
In the version of life I had scripted for myself, there was no violent crime that left my husband, TC, in a coma fighting for survival. Nor was there a radical transformation of heart and soul, forcing me to delve into a deep examination of my character and long-held dogmas. TC’s literal injury to the head was, in many ways, a figurative conk to my own. Never did I plan to be so intensely humbled by my own former perspective of the world; but in the three years since TC’s attack, I have learned a great deal, and chiefly, I have learned what any good writer knows to be true: in life, and in writing, it is essential to revise.
Our post-TBI life is a happy one because I have learned to revise what I expect from the world and the people in it. While I have struggled to process the life-changing event that caused TC’s brain injury, my greatest struggle as a caregiver and wife has been learning to adjust my expectations of my husband. Some days he looks so much like he once did that I expect his brain will behave in the same way as well. As TC would likely attest, the trouble with making a miraculous recovery like his is that the people around you come to expect constant miracles. And it’s true. The more TC’s brain began to heal, the more I came to want and expect from him, often feeling disappointed or frustrated if things didn’t pan out according to my vision. On his best days, when his language is crystal clear and our communication easy, it’s a challenge to keep my expectations in check. I’ve learned, however, that brain injury and expectations are fluid, not fixed. No two days are the same, so caregivers must revise and adjust their expectations accordingly.
As a teacher of writing, I’ve watched kids shudder and shut down during the revision process. The notion of critically stepping outside one’s comfort zone to put forth effort into trying something a new way is not an idea they immediately welcome. Revision is tough because it’s an admission of both growth and change. To try something over means accepting that your initial beliefs weren’t fully informed, and acknowledging that there are other ways of doing, thinking, and acting.
I’ve felt happiest on the days I’ve embraced this change, willing myself into a new mindset, and stepping back to examine the wholeness of our lives, instead of remaining singularly focused on the difficult thing that befell us. I accept now that there is so much more to learn in this life and that I will never acquire all the answers. I also accept that I am not owed anything from this world, but that I have been the fortunate recipient of many extraordinary blessings. And I accept, wholeheartedly, that brain injury has been an unexpected teacher in my life, flipping my previous expectations on their heads and showing me that the only certainty about the future is that it’s meant to be revised.
4yrs; Day 1725 – Life after Brain Injury
Hi Everyone,
I can’t believe 3 weeks has passed since our last
entry. June’s weather has not been kind to Corey’s headaches. We took another trip to
the headache specialist in Virginia and she is predicting a rough summer for headaches!
This month has been difficult. We’ve been very busy writing for the BIAPA conference but our month has had additional challenges; limited nursing coverage and
Corey’s new party trick…fainting! Saturday we went to Christiana after her
2nd spell in a week.
She was seen by her Neurosurgeon, Christiana’s neurology team,
Cardiology team, and a general internist. They literally ordered every test possible. I’m happy to report she passed each one.
VP shunt is functioning the way it should, CT scan is stable compared to the scan taken in 2012, blood work, urine, thyroid and EKG heart halter all negative. Her blood pressure normally runs low, heart rate and pulse within normal range. In addition, the symptoms did not present as possible seizures. They are calling it a vasovagel syncope. In layman terms; she’s fainting but we don’t know why?
Another confusing twist, Corey has been sitting when each episode happened. For whatever reason, her blood pressure drops as her heart rate goes up and down she goes! If you recall from our earliest posts, Corey’s favorite Disney Princess is Sleeping Beauty; at least now our princess wakes up quickly!
We are looking forward to participating in the Pennsylvania Brain Injury Association’s Annual Conference. The title of our talk is “Incorporating Life into your recovery – Creating your own Roadmap”
I’ve asked Corey to take on her portion of our talk. She has been journaling along side of me as well as working with our day nurse. I was blown away by her list of thought starters.
From Corey’s journal:
Why is it so difficult to predict the outcome?
What causes it?
Will I get better?
(sidenote) – Yes, of course in time. After the brain has healed it takes longer for a few then others and think of it like your brain is an 8 Ball, you just don’t know what will come out of it.
How do I go through having a brain injury – day in and day out?
How does being diagnosed with a brain injury make me feel?
What may be the hardest challenge?
(sidenote) – I endure all physical, mental and emotional. It is simply how to re-work everything and I try and reach that goal every day by walking; easy as that.
If I was diagnosed all over again what would I tell myself?
What is the easiest/hardest part of my recovery?
What is one of the big goals set for me?
What may be an activity I accomplish both physical and mental every day?
Is there anything that used to be difficult that now is getting easier to do bit by bit?
How may I accomplish the BIG goals that are set out for me?
PERSONAL Questions?
How am I doing with being this way?
How do I feel about having brain injury?
(sidenote) – Personally I’m stumped. Here are some things my mom does for me – first of all she is always there. Well she is my advocate, so of course she is! BTW thank you mom
What’s some things I do at therapy with Natalie and Anne that are good?
When I am with Dr. Askin, I always work on cognitive things such as brain oriented games. Dr. Askins is a great person. She is great at what she does.
Today Corey wrote a portion of her part in our talk:
“This isn’t a speech about PT/OT or Cognitive therapy. This isn’t a speech about ways to recover or help you cope. It’s not enough to live a life where that’s all you’re doing.
(using a quote from the internet ~ Author unknown)
The greatest challenge in life is discovering who you are. The second greatest thing is being happy with what you find.
Even though things are hard, we all have to keep chasing our dreams. I can’t give up on my dreams because I was diagnosed with brain injury. I can’t wait until I get better because I don’t know when that will be; so I have to do it now because that’s what makes me ME…and that is how you put LIFE into recovery plain and simple.
Corey,
Life is meant to be lived and enjoyed – even through the darkest seemingly hopeless phases. Life after Brain Injury is all about making tiny inroads to get our lives back; survivors and caregivers alike. It’s about small beginnings and seizing opportunities. Although many parts of our lives are still on hold, the day trips, family events and activities we find that supplement our regiment, help us to momentarily step off the hamster wheel. By changing our perspective, we are reminded we can create our own direction. Brain Injury hasn’t frozen time waiting for us to heal. The clock is still ticking. Our life path would have continued to twist and turn despite the circumstance. We must look at our life after Brain Injury without wearing blinders. Our roadmap for planning the future is paved with making the most of today; open to incorporate life’s possibilities, xoxo
4yrs; 8 months – from Corey and Marie; writing a new presentation
Hi Everyone, it’s Corey and Marie
We are busy writing our next talk for the Brain Injury Association of PA’s 15th Annual Conference – June 28-30th. We will be speaking on Sunday night. This years topic is ‘Making the Most of Today – Planning for the Future’. That’s the perfect topic for us!
Our speech is entitled ‘Incorporating LIFE into your recovery – creating your own roadmap’. We chose this title to share with other families some of our creative strategies we use to rebuild our new normal.
C – that is what we are living; a new, different type of normal
C – it is important to figure out how to keep living and not get wrapped up in negativity. How do we stay positive to keep moving forward because that is important to us.
Every survivor has a different story and a different outcome. We all travel on different paths even though we travel together. Conventions like this help us share ideas, positive stories, encouragement and we learn from each other on varied topics.
C – I like to go because being the person who has brain injury i enjoy learning new ways to help me. and meeting other people, hearing someone’s positive outlook on life, gives me inspiration to keep on trying to get better.
C – by the way if any of you reading this wondered, I am not nervous to speak in front of people at all. thankfully since I was a competitive cheerleader, that experience got me ready for being in front of a lot of people.
C – overall i do believe i am looking forward to talking in front of everyone and taking more classes to learn about brain injury. before I get too excited I better get my speech written! xox