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4yrs; Day 1598 – therapy update

Hi Everyone,

Corey was back at Bryn Mawr today. Natalie hasn’t worked with her in 2 weeks and she ‘felt’ a big difference in Corey’s body. Normally she walks behind Corey holding her hips and torso, so she literally has first hand knowledge. Corey’s lost 23lbs since September with her daily exercise and healthy eating and Natalie could feel it.

Corey uses her recumbent bike when she’s not at Bryn Mawr. She’s increased her time to 30 minutes now. In addition, she stands at the island and we continue to take practice laps walking with her forearm cane. Stretching is a daily requirement. We stretch Corey’s left toes, ankle, calf and thigh muscles as well as her left arm twice daily to keep her tone from increasing. The doctor is so pleased with her left arm, he’s decided to use the full volume of botox in her left leg only. The next botox shots will be given early April.

Focusing on Corey’s arms and legs is just part of our daily regimen. Stimulating her imagination and maintaining her motivation and interests is equally as challenging. Some of the ‘everyday’ conversation target different cognitive exercises.

For instance today as we drove to Bryn Mawr I asked Corey to be my co-pilot. I challenged her to name the roads and direction of the car with each turn without verbal ques. She recognized the main road, named it and knew we were heading north. When she couldn’t remember the route number, she did accurately guess the direction of the next turn. Unfortunately, after a few minutes of silence, she asked, “could you remind me where we’re going”? “why do we go there”? After our day is over, she will ask, “could you tell me what we did today”? Good news…she’s asking!

We have been working on different methods of strengthening Corey’s memory. I recently bought her new cooking magazines. Normally I read the recipes to her and ask her to remind me of the list of ingredients. Tonight, I asked her to read the ingredients to me (we are also trying to identify her changing visual issues).

Corey will silently look at an isolated line then look up and repeat what she’s read verbatim. Tonight I switched it up and asked her to read each word out loud (trying to get a sense of what she sees, how she processes and identifies the words). Each word was read with a 4 to 5 second delay. As I watched her I noticed she turns her head to the left. I asked her why she **** her head when she reads?

C-I turn my head because the words aren’t clear. I think one eye is stronger than the other.

This simple statement speaks volumes and can help us identify what we can do to help her read more easily. As Corey learns to communicate better, we are learning about various field cut limitations.

The older sister of one of Corey’s friends taught us a trick to help Corey’s visual focus. Alicia is studying to become a Speech/Cognitive Therapist. She cut an index card in an L shape highlighting the edge of the L in red marker. I have been working with Corey to utilize this tool. Corey holds the L with her left and right fingertips and slowly moves it down to isolate each line. It helps her stay focused so the number of lines per paragraph doesn’t overwhelm her. It’s taken some practice but tonight it worked with the best accuracy to date. Corey read a recipe list of ingredients 18 items long. She remembered 3. This type of cognitive exercise is very tiring for her but it is becoming easier as we continue to practice.

Experimentation and Innovation are the foundation for motivation and persistence. If we run out of ideas we stop moving forward. That is not an option for this young woman, xoxo

4yrs; Day 1597 – caregiver meditation questions

Hi Everyone,

To begin, we are all well. I received several text messages and emails this week from dear friends and many of Corey’s carepage followers because we were not posting. I am sorry to make you worry, I was away. With the help of Caitlin, JohnPaul, Jackie and 2 nurses, I took a “real” vacation.

We have been preparing Corey for my trip for several weeks and she handled our separation better than expected. She was sad, had moments of anger and outbursts because she would forget but, during the day at least, she handled her emotions fairly well (her most difficult time is always through the night). She used her journal to write down her frustrations daily. She even mentioned wanting to take her journal to Dr. A to talk out some of what she wrote.

We will be facing many changes in the next several months, so I took advantage of my time away to rest and regroup. While I was away I was making entries in my ‘mental’ journal. As you all know by now, I ‘write’ at night. I often tease that my house is the loudest at bedtime. The conversations and worries in my head are relentless. The change of my 4 walls doesn’t always silence those voices either, and I find myself carrying those concerns with me regardless of the destination.

Several years ago I met the wife of a TBI survivor and she sent me an entry from a blog she keeps. She was sharing how this time of year is particularly difficult as the winter blues settle in. She recalled the trauma her family had to navigate and once she helped them safely to shore, she was out of gas. A counselor gave her practical advise; a version of Maslow’s hierarchy of needs. It has become a form of meditation for her and she recommends it nightly.

As I read her meditation questions, it helped me refocus and realign my perspective releasing the anxiety I create within myself from projecting as I listen to those nighttime debates over ‘what’s to come’.

So, per my friend, when you find yourself anxious, worried or tossing and turning about things you cannot control, ask yourself these questions:

Do I have a roof over my head?
Do I have enough to eat?
Am I loved?
Do I have people whom I love?
Do I have “enough” (whatever that may be)
Have I always been able to figure something out, one way or another, to mostly make it work?

If you can answer “yes” to all of these, take a deep breath, roll over, go back to bed and she guarantees it will look a little more possible in the morning.

Happy dreams, xoxo

4yrs; Day 1586 – from Corey

Hi Everyone,

Today’s inspiration comes from motivational speaker, Brian Tracy

An Attitude of Gratitude
Develop an attitude of gratitude and give thanks for everything that happens to you knowing that every step forward is a step toward achieving something bigger and better than your current situation.

These words perfectly describe our experience tonight. Corey works hard everyday to increase her physical strength in order to prepare her muscles for the day her brain heals the connections that send the signals to move the limbs on her weaker side.

I am captivated by her concentration and determination. Her laser focus to ‘will’ her left toes to wiggle, her foot rotate, her hand to open or her arm to lift and stretch outward. She will break from her task and look bewildered, ‘why can’t I make them move’?
M – you brain is still healing and that connection is still getting stronger.
(the daily question follows)
C – when will it happen?
C – I can’t wait to start getting up and walking around on my own, no help from anyone.
M – Ok, come make dinner, I’ll get your walker.
C – NO! I don’t want a walker, I said no help.
M – Do you remember your Barbie Tricycle? your walker is like your 3 wheel bike. It helps you practice until your ready to walk with the cane alone.
C – I hate walking with anything
M – Do you remember your 2 wheeler? It had training wheels on it because you couldn’t go from a tricycle to a bicycle before you could balance. You didn’t like that either, in fact, you were bound and determined to practice so you could take those training wheels off and ride off a ramp the rest of the kids in the neighborhood were jumping off of. If you practice with the walker, it will give you the strength to move to the cane and before you know it, you won’t need the cane at all and you’ll be getting up and walking around independently.

Corey was obviously angry but held her tongue (talk about progress!) She stared at the walker, moved her head to look at the stove then looked back at the walker. She was silent for a few more minutes as she turned her head and looked away again; it was evident she was processing. She turned back towards the walker. Her left hand and arm, slowly moved up from her lap. Her hand shakes a bit as she opens her fingers and tries to grasp the handle. As she placed her right hand on the chair to ready her stance she said, “will you help me? I want to cook dinner”.

Corey needs just a little support to stand but once she’s upright, she’s fairly steady on her feet. I no longer need to physically guide the walker. She manipulates it to make her turns around the island, inching her steps one at a time. I follow behind her as the ‘spotter’. She gets frustrated as she tips her left toe and her foot drags and when it hits the wheel, but she keeps moving forward to cross the kitchen and reach her destination…the stove.

As sous chef, I have prepared all the ingredients and placed them on the counter per her direction. She holds onto the walker with her left hand and reaches to turn on the burner with her right. Using this balanced position she continues placing the pots, adds the ingredients to the various designated spots and begins to cook.

Corey stood at the stove without conversation. Her facial expression serious and focused. She was methodically stirring, sautéing and adding spices for her Chicken Stir-Fry. The aroma changed her mood. She turned to me smiling,
C – this is fun
M – this is independence

‘every step forward is a step toward achieving something bigger and better than your current situation’…This is gratitude, xoxo

4yrs; 4 months – exercise update

Hi Everyone,

We have a few updates for you.

First from Caitlin posted on her website, caitlinbeattie.com, via the BLOG link:

For my senior project for Photojournalism II, I need to create a 2 minute documentary video and I’ve chosen Corey as my subject. For this project I will be using Corey’s voice along with still images and video to tell her intimate perspective. Last week, through the combined efforts of family and friends, I have collected so many fantastic questions to ask Corey.

I’m so thankful for everyone who submitted questions!

Next step – interview!

Secondly, Corey’s Update
We worked with a substitute PT. After reviewing her regular exercise routine and the work we do at home, the ladies chose to focus on AB’s. Well, Corey had one heck of a workout today!

(Please note, there were 2 sets of 10 for each of the following exercises)

She starts with stretch warmup. Sitting on the edge of the matte, using a 2 pound sand ball, she leans forward to touch the floor then pulls up to lift the ball as high above her head as she can.

Next, holding the weighted ball in front of her with extended arms, Corey then rocked forward and back for balance and core strengthening…repeat…

Next, she moved onto her back on the matte. Using a large blue exercise ball (about 3′ in diameter) Corey placed her ankles on top of the ball, stiffened her legs and lifted her butt to bridge for reverse plank lifts…repeat…

(don’t forget she’s doing 2 sets of 10…are you tired reading this?…she’s just started)

Next, heels on top of the ball, she rolls the ball towards her butt bending her knees then rolls the ball forward…repeat…

Next, ball under her calfs and heels; feet together, knees roll as far right and left as she can rotating the hips. This stretches the back, outside thighs and hips…repeat…

Next, lifting her legs off the matte with knees bent, legs at 90 degree angle, she holds for a count of 10.

Next, crossing her feet, she moves her legs in a downward motion to touch the matte, then lifts immediately back up to 90 degree position…repeat as quickly as she can…(by the way, the touch down and lift up count as 1 rotation not 2)

Next, 90/90, Corey rolls onto her side. Knees and legs for a 90 degree angle. With control she lifts the leg maintaining the 90 degree…harder then it sounds…repeat on the opposite side

Did you think she was finished? Nope, off for a 400ft. round trip walk with her cane only to return to the matte for OT exercises with Anne for an additional hour’s session.

Corey has been working very hard both at Bryn Mawr and at home. She is riding her exercise bike almost every day for 15 to 20 minutes. We are practicing balancing at the kitchen island and taking laps around the house experimenting without the cane for a few steps. And we just added a new exercise at the kitchen sink. Corey stands with her feet at shoulder width apart about 6″ from the front edge of the sink. She reaches forward to hold on and bends at her waste as if she’s putting her head in the sink then pushes back up to a standing position. This is to work on her motion balance, strengthening her upper arms as well as her legs.

So…those of you who are too tired or too cold to go to the gym now have ideas to complete your workouts at home…NO EXCUSES…never give up and never give in…repeat! xoxo

4yrs; Day 1580 – awareness triggers regression

Hi Everyone, its Marie

The questions posted are amazing! Thank you for taking the time to jot them down and sending them to us. We have been working with a Neuro-Psychologist and your questions have actually sparked new conversations that Corey has ‘asked’ to talk to Dr. A about.

I bought Corey a traditional notebook (with a purple cover of course). She is starting to use it as her questions journal. This new tool is in development. Corey will write her question. Depending on the day/moment, she will write it ledgibly keeping the sentence on one line. Other times, her sentence starts on the left but towards the middle of the line, arcs and curves down towards the right. Sometimes she writes and tries to reread her sentence but loses her place if there are multiple lines. Most often, she can’t read her own writing.

The process of Corey reading and writing continues to evolve and that’s to be expected. As the connections continue to heal, we will continue to see improvement. What is most important is her ability to express herself. She is beginning to truly work on the ‘hard’ emotions. Her short term memory doesn’t allow her to carry over her achievements but I know they are being stored somewhere ‘in there’ based on some of the post conversations we have.

We are starting to notice a regression in behavior we believe is partly due to awareness and trying to cope with emotional growth and believe it is possibly a reaction to one of the new medicatons as well. Caitlin’s project and Corey’s counseling sessions are perfectly timed. Both are helping her tackle this new developmental stage.

Please keep those questions coming. It’s not only interesting for us to read what you all have ‘wondered’ over the last several years but you all are helping Corey with this next phase of her recovery.

I think it’s incredible we ALL get to share this journey together, xoxo

4yrs; Day 1578 – Hijacked

Hi Everyone its Caitlin,

Normally when I hijack the page it’s just for fun but today I need your help!

For my senior project for Photojournalism II, I need to create a 2 minute documentary video and I’ve chosen Corey as my subject (shocker!)

My photojournalism I project documented the impact of my sister’s accident on our family and our move home from the hospital during the renovation. For this project I will be using Corey’s voice along with still images and video to tell her intimate perspective. This is where I need your help.

I am looking for questions to field to Corey. Questions we’ve all wanted to ask but were afraid to. Corey has agreed to answer, as best she can, to tell her story of survival (I’m not doing this against her will…I promise)

To get an idea of the themes of my projects, here is a link to the images of my Photojournalism I project.

doing it alone.

Please submit as many questions as you’d like in the comment section. Even if you’ve never written to us, please don’t be afraid to be honest, I’m trying to make this as diverse and genuine as possible.

Thank you in advance for being apart of this project. We continue to appreciate your support and friendship. The final project will be posted the end of March…just before MY GRADUATION!!

4yrs; Day 1577 – new anxiety strategies

Hi Everyone,

We tested some new strategies to help Corey overcome her anxieties.

I was treated to a girls weekend by two of my close friends. I was able to say yes because Caitlin and Jackie helped Corey ‘hold down the fort’. Corey gets very anxious when I’m away from her, especially overnight, so we experimented with some new ideas.

1. Video – I recorded two messages for Corey. One would be played during the day reminding her where I was, some of the fun activities she would be doing with Caitlin and Jackie and when I’d be home again. The second would be played at bedtime, repeating the usual bedtime rituals. It was our hope that seeing me and hearing my voice would ease her anxiety.

2. Journal – I explained to Corey that sometimes I might not have cell reception while I was away (we are trying to stop the repetitive texting/calling). Caitlin gave Corey a small red journal with lined paper. I asked her to write whatever she wanted to tell me (good or bad) so she wouldn’t forget what she was calling about and when I came home we could have fun reading about her girl’s weekend. I asked her if she wanted to title her journal? She called it “Memory Journal for Mom”.

3. Calendar – I drew a calendar showing just the weekend days. Each day was labeled by name and date. It also listed what activities were planned for each day. My hope was the visual blocks would help Corey recognize the length and duration of time.

4. Memory Cards – Each day’s specific events/activities were listed on a large 5×7 card. We’ve found isolating the day is less overwhelming.

I left late Friday afternoon. I kept the phone by my side waiting for a text or call. Bedtime came and went and no call. I was excited and curious. Did the video work? Saturday, no texts or calls, which was not a surprise because I knew Caitlin and Jackie had a full girls day planned. Bedtime arrived and the phone rang. Good news, Corey’s voice was calm, we had a brief conversation about her day, she said goodnight and hung up. The girls followed up with a text; they had a very good day, Corey was hot/cold with her emotions but overall she did well. They kept busy but it was rough on their side at bedtime which is why they called. Corey did eventually go to sleep. Sunday arrived and overall Corey had a good day because she knew she was going to pick me up.

The old saying, ‘if at first you don’t succeed, try, try again’ is a great reminder to keep looking for new solutions to whatever challenge you’re facing. Our challenge changes every day. Thinking out of the box is truly the only method I know of to keep moving forward towards what we hope to accomplish. Some ideas work and some fail miserably but if we don’t keep experimenting we’ll be stuck on life’s hamster wheel.

I would say the weekend was a success. Thank You to Caitlin and Jackie; they did a great job managing the weekend and without their help I couldn’t get away. Bravo to Corey, too. She not only did a great job journaling and working through her anxiety but she was also willing to try a new coping strategy. And thank goodness for girlfriends for providing me the opportunity to enjoy a relaxing visit…I even took a nap! xoxo

4yrs; Day 1572 – from Corey

hello everyone in carepage land

i realize its been quite a while since you have heard from me.
today my mom went to go get my brace fixed.
we are going to try something new that will keep my foot from rolling. my therapist said sometimes the pain in my knee might not be from my knee at all. it can be my foots fault. my mom, my therapist as well as me hope i start walking better and with less pain. however the goal is sooner than later. my goal is i prefer sooner! i want to start walking on my own but who knowsa right? tomorrow we will try it out and i will get my eyes checked too. i have a headache every day. maybe we can check that out as well.

Well I hope you had a good day too, xoxo

4yrs; Day 1571 – from Corey; new cycle of change

Hi Everyone,

Corey has begun a new cycle of change. We have been going down to work with her DC team, working with a new neuro-psychologist in Philly and continue at Bryn Mawr for out-patient therapy.

1. Medications; Dr. K is very pleased with the changes she witnessed in Corey since September. Her temper has diminished but her anxiety remains high resulting in less frequent tantrums (we hope to eliminate the tantrums).

We have also seen an increase in sparks of short term memory recall. A light switch has NOT turned on. Corey still has significant memory loss but since some of the medications changes, she is recalling conversations and initiating questions to confirm recall.
C-(she always starts out with…) I might be wrong did we go out and see so-n-so recently?
C-can you remind me where we just came from?
M-what’s the picture in your head?
C-I might be wrong but were we exercising at a ballet place?
M-you were using a ballet bar for balance today, good memory!

Corey’s sense of personal awareness is getting stronger, her verbal communication skills are getting more detailed and she appears to be making cognitive/emotional gains. Dr. K has been weaning an older med that works as a sedative not an anti-anxiety drug. Once that is out of Corey’s system, she is adding a true anti-anxiety drug to help take the edge off of Corey’s temperament. In addition, she’s adding a drug used for Alzheimer’s. This new drug used in combination with two stimulant drugs Corey currently takes is expected to improve her short-term memory and maintain recent learned knowledge. We hope to see overall improvement in Corey’s anxiety, awareness and (hopefully) memory in about 3-4 weeks.

2. Neuro-Psychology; Corey has expressed incredibly insightful emotions by sharing her interpretation/observations of how she feels about her ‘new normal’. I have always believed that although Corey couldn’t speak early on or express herself clearly on a daily basis; she’s ‘in there’. She has memory loss but that doesn’t mean she doesn’t ‘know what’s going on around her’ when she’s interacting with others.

I remember seeing a motivational speaker that was a paraplegic. He commented that the average person saw his chair, not the man that sat in the chair, nor his intellect. They saw the wheelchair and assumed he was born that way. Corey is beginning to express similar thoughts. She feels that people treat her differently, have less respect for her and judge her because she is ‘stuck in a wheelchair’.

Corey’s speech is improving but is slurred as a result of her accident. If you’re not used to ‘hearing’ her, you might not understand her pronunciation of words but if you listen to what she has to say, you will hear her intellect. When she speaks, she sometimes stammers as she begins a thought or sentence. She has experienced people raising their voice as they talk to her as if she’s hearing impaired. At times, people deliberately speak slowly or use a sing-song tone of voice, or use a childish (somewhat degrading) vocabulary in their conversation assuming she needs an elementary explanation and she hates it! She has said, “I don’t think people think I’m smart”.
M-why do you think that?
C -because of how they talk to me

Corey want’s to walk and hates being in her wheelchair
C-people stare at me and I don’t like it
C-I don’t like being stuck in this chair when we go out. I want to get up and walk around so I can take care of myself and people don’t have to push me everywhere.
In addition to her perception of her public appearance, her private life at times is awkward. Corey is embarrassed to have assistance with certain basic activities of daily living.

Corey’s separation anxiety and stranger anxiety is based on the fear of me leaving.
We are working on the difference between going away vs. leaving. Corey stated the difference in her own words;
C-going away is temporary, leaving is forever.
M-you’re right, so based on that definition, I can go out for a few hours, go to work, go away for a weekend or go away for a week but I always come home; it doesn’t mean I’m leaving forever.
C-but I get scared because you’re the mom and you need to take care of me.
M-I’m the mom of adults. You don’t need to be taken care of like you did when you were younger and just because I go away doesn’t mean I stop being ‘the Mom’. I’ll always be your mom no matter where you are or how old you get. Mom’s are forever.

Dr. A has been impressed by the depth of Corey’s emotional intellect. “She is a smart woman”.

Corey may have memory loss but she is more in tune with who she is, what she wants and how the world she now lives in has changed than many would ever begin to guess…the issue is, those views are forgotten as quickly as they are realized hence the recurring panic/anxiety, repetitive questioning and disorientation.

Bottom line; she’s ‘in there’ and we’re going to continue to help her strengthen her self awareness, self esteem and self reliance along with regaining her physical capabilities so she can live her life to the best of her ability…..hmmm…is this just brain injury…sounds “normal” to me, xoxo

4yrs; Day 1570 – open a door

Hi Everyone,

My nieces posted a video clip today of a young man named Josh that had been bullied by his peers for putting pictures of his deceased father in his locker. His mother moved them to a city. Her thought, ‘bigger city, new High School, maybe they could start over’. Josh still didn’t feel as if he ‘fit in’. All he wanted to be was a ‘normal kid’.

The video not only highlighted Josh’s feelings but the feelings of other students that shared his experience of being bullied.

One day Josh decided to fight past his weariness. One day he arrived at his school early to hold the door open for every student and teacher that arrived. The students recanted that it was ‘weird’ at first. Josh was known as the ‘doorman’ for awhile but he kept showing up, held the door open and greeted everyone everyday.

The video had a happy ending. Not only did Josh become well known in his High School, including being named Prom King, he also affected change. Teachers and students were nicer, more friendly, smiled and began holding doors for others as well. That’s not where the story ended. Josh is sharing his experience as a public speaker, teaching other students, of all ages, not to be afraid to open a door in their lives too.

Many of us have not been bullied, thank goodness. But I’m sure we all have feelings of weariness, despair, anxiety, sadness and have questioned why is this challenge I’m facing happening and how can I get through it, make it stop hurting so much?

An open door…symbolic of new opportunity, transition, welcoming.

A smile…how often has a strangers smile caught you off guard and gave you a moment of joy on a dreary, hectic day?

A kind word…many times a greeting is unheard because its an ingenuous reflex, but for some it’s the first kind word they needed to hear.

I woke up weary. My heart heavy. I’m physically and emotionally tired. The bully in my life is persistence. It beats up on patience, optimism, hope, courage, motivation and positive thinking. Josh’s story was my inspiration today to remember ‘Never Give Up and Never Give in’ to those feelings…open a door today, xoxo

You can see Josh’s story on YouTube if you search for;
Josh – opening doors and hearts | WestJet Above and Beyond Stories