1yr; Day 719 – 1,332 feet
Corey,
People ask us all the time;
Where do you find the energy when you’re exhausted? ~ 1,332
What do you whisper to your self when you don’t want to do one more task? ~ 1,332
How do you keep working so hard without knowing if you’ll get better? ~ 1,332
How can you smile and be so positive? ~ 1,332
Does your saying ‘never give up and never give in’ really work? ~ 1,332
The next time you’re asked simply state;
ONE THOUSAND THREE HUNDRED THIRTY TWO…
That’s the number of feet you walked today on the Lokomat!
You walked for 16.26 minutes, doubling the length of time on the treadmill and setting a new personal best for walking distance just since Monday!
Honey, I know the hard days seem never ending, but you get stronger each day and it adds up to amazing days! Accomplishments and success don’t just happen. True accomplishment happens because you push everyday. The daily drive appears to be effortless when the good days are good. We know nothing is effortless.
Today was a good day! Your determination, self motivation and discipline over the last year put the numbers on the board today ~ 1,332.
You set the bar Corey…next week, let’s go back and knock it down! xoxo
1yr; Day 717 – You’re kidding me smalls!
Hi Everyone,
Today was a very good cognitive day!
On the ride to Bryn Mawr Corey was repeating her usual questions. The sequence is always the same. The pattern and frequency is a sign of rising anxiety. Our answers are direct and repetitive to help her reorient and prepare for who, where and what we will be working on during our day. For the first time Corey initiated what she was internalizing, “I don’t want to go to Bryn Mawr. I do not want to work with anyone I don’t know”. I was so proud of her and thrilled with her statement…it’s a sign that our conversational behavior plan is beginning to work…she’s vocalizing her fear instead of screaming it!
The behavioral plan we are trialing is not based on any study or statistical information. If it were officially chronicled it should probably be listed under the “wing it” chapter of TBI 201.
Every day we are looking for ways to help Corey cognitively, especially with strategies to bridge her short term memory loss. When a patient suffers a stroke or TBI, typically the therapists will use a calendar, a memory log or a check list approach to help them develop their short term memory. Corey does not consistently recognize letters in the written form so these tools will not work for her. If you spell anything or give her auditory clues, she has no problem bridging the connections.
I’ve mentioned the Drew Barrymore movie, 50 first dates. For those of you not familiar with the movie, I’m about to give away the ending. To cope with Drew’s short term memory loss, Adam Sandler’s character plays a video every morning of their current life together. Drew wakes up, watches the video and she remembers her husband, family etc.
Last week we decided to film Corey’s session with Natalie and play it on the ride up to Bryn Mawr. Even though yesterday was such a volatile response to the initial introduction, after Corey calmed down we showed her the video from last week. It assisted in not only reorienting her but in transitioning her from the hallway to the Lokomat room. She had a very successful session.
Today we filmed Elaine. She spoke directly to Corey. She introduced who she is, the fun they have together during their OT sessions and displayed some familiar games, etc.
We played this for Corey prior to Elaine walking into the room. When Elaine entered, there was an initial push back until we mentioned some of the content from the video and Corey heard Elaine’s voice. She settled down and she was ready to work.
Corey played the Toy Story Memory Game. We chose 3 characters, 6 cards. With verbal queues she matched each character 3 games in a row. We moved onto an old childhood favorite board game…Trouble. Corey placed her left hand on the popper and her right hand over the left to push down and pop the dice. That’s a hard popper to push with healthy arms…she did very well. She moved her colored men, counted the spots and placed them in the little buckets for fine motor control. PS – (for the record) she beat Caitlin!
We used the same approach with Speech. What was very exciting for Kate was our retelling a story from this morning. As we were getting Corey dressed, she asked where we were going. The usual response was Bryn Mawr. Today we work with Elaine and Kate. Elaine is OT and Kate is speech. Corey interrupted, “we play hang carpet with Kate”…Hang Carpet is the same game as Hangman…but we use Caitlin’s cat (named Carpet) as our victim! Kate was thrilled to hear Corey remembered that game from two weeks ago. That’s short term memory folks!!
My favorite part of the day was an observation I was privileged to watch tonight. Corey and I were sitting in the family room. We were watching the Sandlot when I looked over at her and noticed she instinctually lifted her left arm, moved her left hand to her right elbow and was scratching an itch! Sound silly? THIS WAS A MAJOR FIRST! Imagine what it’s like to have an itch you can’t scratch? Now think of the personal pleasure, satisfaction and relief you’d get to scratch it. Corey couldn’t do this for her self a month ago. I know I’m a sap but watching her scratch a simple itch I began to well up…she was independent for that moment. I was so happy for her.
Corey, you know one of my favorite lines; “you’re killin’ me smalls”. Most days we tease each other with this saying. Today you were the Great Bambino hitting it out of the park! I was so proud of you. The games you played (and won), the ability to express yourself, the depth of conversation and level of awareness you are reaching for is more difficult than the physical therapies you have each day.
If you keep working and playing this hard, it’s going to pay off. You are coming back stronger than ever kiddo. Today was a home run! xoxo
1yr; Day 716 – gaining trust
Hi Everyone
This should probably read “good morning”! Yesterday was one of those days that by the time I got Corey settled and asleep, I allowed myself to sit down and write. I sit in my favorite chair, prop the laptop on my lap, close my eyes as I take a deep breath, exhale and clear my mind to listen for the first thought to come to me…it was Corey calling “MAahhhm”…at 4:30am!
Although I was sitting just a few feet away, I woke up startled wondering where I was, what time it was and what happened to the beach I was just sitting on! 🙂
Yesterday was a tough day. Corey’s stranger anxiety is difficult to reorient sometimes.
I want to share that I am incredibly grateful for Natalie and her willingness to work with our conversational approach to the behavioral plan. She wanted to work with Corey on the Lokomat yesterday afternoon. The initial approach was explosive. Corey is at the point that if a person at bryn Mawr says hello to her, she screams out in a panic. It sometimes takes two of us to hold her and calm her down.
During her fit I ask her leading questions to try to find the emotional root of the anxiety. It came out that she didn’t remember coming to Bryn Mawr “ever”. Natalie managed to gain eye contact with Corey. I then watched this amazing professional in action! She calmly spoke to Corey, asked her to take a minute to listen to her voice. She reintroduced herself, told her when they met (restating the date of the accident) and how long they’ve known each other. Natalie confirmed personal details in Corey’s life. “I know you have a cat named Amelia that wears a tuxedo, a dog named Roxie, I’ve been to your house and saw your super cool bedroom on the second floor…” and so on. As Corey looked at Natalie and listened to her voice, I witnessed the tension begin to release in her body. Corey began to relax. After 5 minutes Corey was calm and willing to let Natalie work with her.
We made our way into the Lokomat room. It’s a private area we can section off so Corey is not overwhelmed with distractions from the other patients in the out patient gym. She walked up the ramp of the treadmill with me in front and Natalie behind her for support. Natalie and her coworker secured the harness and positioned her super suit and away she went! She walked for 8 1/2 minutes. Not only that, but Natalie told Corey that it was her best “looking” walk.
We are going thru a tough stage right now, but moments like these are the moments I’m so grateful for. It’s tough, yes, but the gratitude comes because she is having them! When it gets tough I think of the alternative….every fit is a sign that connections are being rebuilt and now that she can communicate it helps us help her strengthen the bridge.
We are very blessed, xoxo
2yrs; Day 745 – just a bump in the road
Hi Everyone,
It’s evaluation week again. Corey is making great physical progress but it’s always nerve wracking when we never know who will approve or deny her continued therapy. There are some things that continue to challenge us on this path!
Elaine, OT, is very excited to report Corey’s progress. Our first evaluation was June 14th. Corey’s right arm was fully functional and had full range of motion. She could open her left hand but was unable to move her left arm independently.
Today, Corey not only opens her left hand she can move each finger separately. She can move her wrist up and down, straighten her arm extending at the elbow, reverse the motion by bending the elbow retracting her arm towards her torso and her greatest accomplishment to date; increased range of motion for her LEFT arm!
The measurements are recorded for active shoulder flexion and extension. That means Corey can lift her arm using her shoulder muscles without assistance. Flexion is lifting the elbow as high as she can from a resting position on her lap. Extension means lifting her arm above her head from the resting position. Passive Flexion and Extension means we help lift her arm. For the first time in 18 weeks, her left arm can finally be recorded.
Her passive flexion was 135, her extension 140 compared to her initial score of 65/70
Her active flexion was 80, her extension 70. Her initial score was “patient immobile”.
18 weeks…it’s amazing to think that we’ve been commuting to Out Patient for 4 ½ months. Thinking of our time at Bryn Mawr seems so much longer but reading it in written form, it’s actually no time at all. When I read “patient immobile” on the initial evaluation in Corey’s chart I was surprised. I concentrate on her day to day and sometimes forget the full extent of where she began. Time blurs the sequence of her recovery.
Ironically, Corey and I discussed her progress on the drive up to Bryn Mawr today. We talked about the accident, her transition from ICU to inpatient, to moving home and then to out patient. What she couldn’t do and what she’s learned to do for the “2nd time” in her life. She told me she gets frustrated that it takes so long. Her goal would be “to stop going”.
We talked about realistic goals. What are her goals? Here are Corey’s goals;
Walking by myself
Getting out of her wheelchair
Using my left arm to cook
Going to college
Go to Disney
I asked her if she ever gets mad at her recovery. She told me, “No, I get frustrated but it’s okay…it’s just a bump in the road”. I love when she reminds me to keep my perspective! xoxo
1yr; Day 715 – missing puzzle pieces
Hi Everyone,
Today was the big race. Team members wrote “For Corey” on the back of their calves and forearms. Corey was waiting for them at the finish line. I was apprehensive about the noise from the bands and her comfort levels with the thousands of spectators attending. She handled the crowds better than I could have hoped for. She was anxious but never acted out. Thank you again to the runners and all our sponsors!
Going into Philly last night and this morning wore Corey out! Fortunately, she napped when we got home and it was just the two of us for the rest of the evening. I love the quiet time we share. We sit at the kitchen table, chat, play games and/or play on the computer. Tonight’s game was more like a memory puzzle.
At any given moment Corey’s memory jumps from middle school to high school. In fact, I can tell how old she thinks she is by the topics she chooses and the memories she describes. Every once in awhile she will see, hear or think of something that jolts her to what I’ve labeled as ‘Moments of Clarity’.
The puzzle piece that she focused on tonight was my Johnson and Wales University sweatshirt she won for me during the Career Exploration weekend the summer before the accident. Seeing my sweatshirt triggered many questions and conversation. She momentarily found puzzle pieces that seemed to fit high school and memories of friends. She asked to go on facebook. We went through pictures and posts that sparked more conversation.
At one point she was very quiet; extremely pensive. I asked her what was wrong. She pointed to her head with her pointer finger and gestured half a circle stating she was thinking. “About what” I asked. She replied, “Lots of things”. “I’m thinking about my brother, when did I see him last”? “When will I go to college”? “Did I play sports”? (in response to her girlfriends birthday) “She was always older first. I wonder if she had a fun day”.
I watched Corey concentrate and process the questions circling her mind. I can only imagine what she must be thinking. In my minds eye I envision her seeing a 1,000 piece puzzle in front of her. The pieces are scattered across a tabletop. Some are facing up and some are facing down. She picks up a piece, tries to interpret the clue from the color and the shape and searches for its companion piece to decode the hidden picture.
Corey each puzzle piece you pick up will fill you with an assortment of emotions; happy, sad, frustrated, confused, angry and/or peaceful. Don’t be afraid to keep selecting. Ask questions and share the story that comes to mind. The most important piece of the grand picture your putting back together is that you keep reaching out and within to find the answers. You will finish this puzzle some day Corey; it’s a Matter of Time! xoxo
1yr; Day 714 – Stone Soup
Hi Everyone,
We had a fun night! We drove into Philly to meet the members of Team Corey for the 2nd annual ING Rock and Roll ½ Marathon (Check out the photo gallery)
This year we have 16 runners, 12 joined us for dinner. Their goal was to raise 15,000. At dessert, the tally was 13,950 with donations still coming in!
Corey and I wanted to do something special for the runners. As I thought about it, the old story of stone soup came to mind.
Once upon a time, somewhere in post-war Eastern Europe, there was a great famine in which people jealously hoarded whatever food they could find, hiding it even from their friends and neighbors. One day a wandering soldier came into a village and began asking questions as if he planned to stay for the night.
“There’s not a bite to eat in the whole province,” he was told. “Better keep moving on.”
“Oh, I have everything I need,” he said. “In fact, I was thinking of making some stone soup to share with all of you.” He pulled an iron cauldron from his wagon, filled it with water, and built a fire under it. Then, with great ceremony, he drew an ordinary-looking stone from a velvet bag and dropped it into the water.
By now, hearing the rumor of food, most of the villagers had come to the square or watched from their windows. As the soldier sniffed the “broth” and licked his lips in anticipation, hunger began to overcome their skepticism.
“Ahh,” the soldier said to himself rather loudly, “I do like a tasty stone soup. Of course, stone soup with cabbage — that’s hard to beat.”
Soon a villager approached hesitantly, holding a cabbage he’d retrieved from its hiding place, and added it to the pot. “Capital!” cried the soldier. “You know, I once had stone soup with cabbage and a bit of salt beef as well, and it was fit for a king.”
The village butcher managed to find some salt beef . . . and so it went, through potatoes, onions, carrots, mushrooms, and so on, until there was indeed a delicious meal for all. The villagers offered the soldier a great deal of money for the magic stone, but he refused to sell and traveled on the next day.
The moral is that by working together, with everyone contributing what they can, a greater good is achieved.
The story exemplifies not only our runners but all the friends and family that have walked along side us the past two years. We can’t thank you all enough for giving of your selves; whether its a hand written note, text, phone call, visit or donation. Many of you have reached out to help Corey and asked others to do the same.
Here is Corey’s thank you note;
Thank you for your time and effort in contributing what you could.
Without you I would be a lump of love.
Corey xoxo
She is the magic stone; each of you are the ingredients that contribute towards the greater good; her recovery. Thank you to each of you and Thank you Team Corey. We can’t wait to meet you at the finish line! xoxo
1yr; Day 713 – Caring for the Caregiver
Hi Everyone,
“Caring for the Caregiver”
A few weeks ago I wrote about balance. That word is incredibly difficult to define when you feel like your keeping the balls up in the air, all the plates spinning and a hula hoop from dropping down to your ankles!
How many times have you heard the following; “put the oxygen mask on yourself before you can help the person next to you”, “Take care of yourself first”, “No matter how much you may want to give to others, if you don’t have anything of yourself, then you have nothing to give”. “Taking care of you is not selfish ~ it’s responsible”.
Today I had the opportunity to listen to those words of love and concern which I couldn’t do if it weren’t for our nurse Jamie. She and Corey have a wonderful rapport. Jamie is amazing and can handle Corey as well as Caitlin and I.
Confident in knowing Corey was being well cared for I took a “Me Day”. My mother used to say, “a new Do is a new you”. I don’t know if I’m any different but after 2 hrs with my stylist Debbie, I’m back to my “natural color” and feel fabulous. Then it was off for a medicinal massage session. I’m happy to say I can now turn my head to the right! Holly works wonders on my neck, shoulders and back. (It’s amazing what stress, pushing a wheelchair and transfers do to your body). I picked up Caitlin and together we ran errands. My favorite part of the day was wandering into a “cute as hell shop”, browsing for an hour and stopping for a bowl of soup and an afternoon of girl talk. Caitlin is a fun date!
Unfortunately I don’t always have the opportunity to create a day like today but I’m very grateful when I can! Good night all, happy dreams xoxo
1yr; Day 712 – Name that tune
Hi Everyone,
Today was a pretty good day. Corey is still having tantrums but she is responding to me almost immediately and she seems to get herself calmed down much faster.
We had ST and PT today. Speech Therapy was tons of fun…primarily because Caitlin joined us and created a game for Corey. It started out as movie trivia but quickly moved to her version of “Name that Tune”. A year ago, Melody Gardot called us. She is an accomplished Jazz Singer who suffered a TBI and Spinal Cord Injury about 7 years ago. During our conversation she told me to start singing with Corey. For those of you who have been walking this path with us since the beginning, you will remember that we started singing an hour a day. Corey started to mouth the words to her favorite songs and occasionally would sing but in a monotone breath; barely a voice. Her voice eventually became stronger and she began speaking last January.
Caitlin’s version of “Name that Tune” highlighted all the Disney songs from their childhood. I can not believe how that girl has managed to memorize lyrics from every Disney movie ever made! There was singing and endless laughter as she acted out the scenes as well.
The most exciting moment of our concert was a song from Mary Poppins. Corey prefers to mouth the words but when it came to ‘A Spoon full of Sugar’ she not only found her voice, she sang with inflection. It’s the first time I not only heard a voice throughout the song, but pitch and tone! Needless to say, the round of applause resonated throughout the halls.
In the afternoon Corey used the treadmill without the ‘Super Suit’ but still clocked distance. Natalie was very pleased with her fluid steps and heel/toe progression. Our recertification period is quickly approaching. Natalie had to take measurements and test for functional improvement. Corey is making good progress and we are hoping for another 24 sessions for ST/OT and most importantly PT…please keep your fingers crossed it’s approved now that she’s on this Lokomat and doing so well.
Corey today’s Daily Motivator has certain paragraphs that are spot on for us at this moment on our path.
~ The most valuable experiences are often the most difficult experiences. The biggest challenges bring out the best in you and compel you to make your best even better.
~ Difficult experiences give you the opportunity to practice persistence and persistence is a quality that is always in demand.
~ Though your efforts may not pay off immediately, they will pay off. Persist and know that you are growing stronger and stonger ~ Ralph Marston
A year ago you were not speaking. Melody suggested singing and you began mouthing words. Eventually you found your voice and today you sang with passion! Persistence, Little by Little; it’s A Matter of Time honey, xoxo
1yr; Day 711 – reality thinking
Corey,
A friend of ours stated that reading the carepage and coming to visit us are two very different experiences. This journal is not meant to sugar coat your reality but to share the factual information detailing the efforts of you and your team during your recovery while we focus on your incremental achievements; bottom line ~ facts and positive thinking.
Positive thinking is not an easy thing to do when you’re dealing with a serious crisis, setbacks, challenges and/or frustrations. It takes effort to find something positive about those situations. Yet just like your daily therapies you won’t recover without it.
It’s more than just repeating hollow mantra’s or happy phrases. It doesn’t mean we have to ignore the negative things in our daily life but rather make the effort to shift the focus and energy from the negative to change them.
Truthfully, it’s reality thinking. Positive thinking realistically sees both sides of the situation but chooses to give effort and support the positive side.
It requires discipline, self motivation, determination and commitment to be successful ~ sounds similar to what you need to exercise doesn’t it?
Guess what…its hard work to see the positive when everyone else sees the negative. There’s a saying; ‘the pessimist sees the problems, the optimist sees the possibilities’. Most times it’s a conscious decision to put on those rose-colored glasses, look at your reality square in the eye and simply state, ‘I will do this’ ~ ‘I can do this’ ~ ‘I am doing this’ ~ ‘I GOT THIS’!
I’m proud of you for the effort you make everyday, xoxo
1yr; Day 709 – Super Suit
Hi Everyone,
Today was a migraine day but guess who pushed through it? Corey was a little quieter this morning and the ride to Bryn Mawr was not filled with the usual repetitive questions; we actually drove in silence most of the way! (That should have been my first sign)
By the time we got to Bryn Mawr and Corey saw the building her anxiety kicked in. Our first session was OT. Good news, our behavioral plan using a conversational approach to her tantrums is working. She revealed several things; she didn’t remember Elaine, she thought I was dropping her off and leaving and she had a headache. Once we talked through each of her concerns and put her sunglasses back on to diffuse the light, she began her therapy. It was a very productive, exhausting session.
Corey slept soundly for an hour however her headache was getting stronger despite the Ibuprophen I administered then she didn’t want to eat lunch. We decided to find a quiet spot and I massaged her head before PT at 2pm.
I was concerned that Corey wouldn’t work with Natalie because of her migraine and insist on going home. Natalie greeted her quietly and we casually chatted about everything but the task at hand (another new strategy we are testing). After a few minutes we start walking towards the gym and without drawing attention to the day’s agenda we just ease into the tasks assignment. It worked…she had her first session walking in her “Super Suit”!
The Lokomat is an amazing machine, but I also want to point out that prior to her walking there is about 15-20 minutes of prep work before we can push the start button. Corey walks up the ramp to the center of the treadmill. Natalie puts the harness on her which has more straps, buckles and hooks than Houdini ever had to wear! Corey’s harness is then attached to an overhead bar suspended by more bungee cords. Once the harness is on and secure Natalie attaches the “Super Suit”. Her legs are padded and secured to 3 cuffs; thigh, calf and foot per leg + the hip and backrest is adjusted and locked. All of this for a 5 minute walk ~ keep in mind the steps described above have to be reversed in the end!
Corey loved it and did very well. Natalie thinks that Corey has good range of motion in her knees and ankles but thought her hips were a little stiff. It could be the result of the pelvic fracture as well as not getting the same movement from “land walking” as she does with the treadmill/robot suit. Overall Natalie was very pleased with Corey’s walk.
The walking was great but we were most excited with Corey’s communication and athletic discipline today. She felt terrible but pushed through it. When she felt anxious, she told Natalie, “I don’t know what we’re doing”. Natalie explained the process and Corey was ready to go. She kept her glasses on to help with the headache and smiled the entire time. She loved it!
Corey your headache escalated and rather than quit early to go home, you pushed through to get the job done. Never give up and Never give in. If you quit it would have only affected you. Instead you were disciplined, driven and demonstrated your commitment to yourself today. I am so proud of you, xoxo