7yrs; Day 2609 – Never Give Up and Never Give In
Happy Thanksgiving!
What a difference a year makes! This time last year, Corey had a huge set back with her fall from the chairlift. I’m very happy and thankful to report she is walking between 300-600’ everyday and she’s standing for a minimum of 40mins in the harness three to four days a week.
I’m also grateful to have my personal Chef back. Corey’s left arm and hand are still weak but she didn’t let that stop her. She prepared the quiche’s for todays lunch as well as all the side dishes; which include sweet potato mash, whipped potatoes, roasted Brussels sprouts and honey glazed carrots.
This past year has truly been the hardest so far. Thank you for allowing us to stay in your daily prayers. Thank you to our local friends and family for calling to check-in, listen to us complain, rant about our frustrations and then hold us while we cried! Sometimes that’s how it works…bottom line, family is everything and that family includes friends! NEVER GIVE UP and NEVER GIVE IN, xoxo
7yrs; 1 month – making change; literally
Hi Everyone,
It’s been almost a month since we returned from Corey’s birthday trip and we’ve had a few ups and downs. Living with TBI is like riding a roller coaster in a dark tunnel. It keeps us guarded and exhilarated never knowing when it will drop, curve or soar. For obvious reasons the highs are much easier to ride than the lows.
Once again, Corey experienced the negative change that comes from the insurance and pharmaceutical companies coveting their profit margin rather than protecting their patients. There was a change in sourcing one of Corey’s meds. The generic Rx was refilled but I noticed the pharmaceutical manufacturer changed. The issue and danger is not publicly known. Truth is I never would have known this either except for information received by a seizure specialist and the regional director of a pharmacy company.
Pharmaceutical companies, by law, are required to follow 3% of a drugs original formulary once its’ brand license ends. The inactive ingredients/fillers can then be substituted/imported by the cheapest out-sourcing companies; often overseas and not regulated by the FDA. For Corey, the change was noticed within 2 days with her fainting in the harness at the UoD café. The episode actually looked a bit like a seizure. The ER visit confirmed the shunt was working properly, all blood-work came back negative and all vitals were stable after several hours; a seizure could not be confirmed as that must be caught as it happens, not after the fact. Corey was released with “unknown” cause of her symptoms.
The next few days we witnessed an increase in headaches, blurred vision, struggle to process and respond to questions, an imbalance in walking and we noted she was writing the phonetic version of words; i.e.; switching K’s for hard C’s etc.
This is not the first time we’ve seen Corey negatively react to a switch in sourced medication. In fact it’s happened twice before (2013, 2015). I called the Pharmacy and they switched manufacturers immediately giving her the original sourced manufacturer. I’m happy to say by day 3 of the change, she was walking straighter and found her balance. By day 4 and 5 she was back to baseline, focusing, writing more clearly, spelling with better accuracy and her headaches subsided.
This is not the pharmacists fault. Insurance companies approve coverage and reimbursement costs based on an incentivized scale. If the pharmacy uses manufacturers on List A, they charged pennies on the dollar. Use manufacturers on List B and the reimbursements are charged at almost .50 cents on the dollar per pill. What these ‘negotiators’ don’t realize is the patient’s brain is processing these fillers not their wallets. Once again, Insurance is a FOR PROFIT not a FOR PATIENT industry, yet who pays?
On the Upside…Corey has been making gains in so many areas over the last four months. The following list may seem trivial but each accomplishment is actually signs of neuro-plasticity…new brain connections!
Corey has started coloring in adult coloring books. If you’re not familiar with these books, they are detailed black and white pictures (often reminds me of the Highlight Hidden Pictures). Corey’s early attempts looked much like an early stages learner; Coloring outside the lines and using broad strokes with one or two colors. She is now using multiple colors, different mediums (pencil and ink) including shading for depth and visual texture.
We’ve been practicing memory exercises which include her calendar, workbook exercises, reading from textbooks, taking written notes highlighting key facts and asking comprehension questions. Corey and I practice daily general questions about her day/week, including pre-accident experiences (phrased “can you picture what we/you did…”). Corey has had “bits” of early memories that have dated up to 6th grade. She’s also recently named a specific piece of certain days from our recent trip (2-3 weeks old!!) but this week’s accomplishment still has me on a high!
Earlier this summer we called my brother. Many of you know he is most affectionately called (and self-named, Uncle Tom the Great). We asked if he could send a register cash box from the business so Corey could practice making change to better prepare her for the cafe. Corey understands and remembers the value of money but she cannot identify the individual coins or bills. It would be as if we had to identify foreign currency. It truly is fascinating to learn which connections have not healed yet. It’s also baffling as to how she can know value and yet not capable of identifying the currency.
Tuesday was busy at the Café. Corey needed some help finding the items on the electronic register but handled the rush and orders well. I guided her through the screen changes to find the items and then pointed out the “change” due. At that point I’m silent and give her time to look at the cash box and process which bills/coins are needed to be returned to the customer. FOR THE FIRST TIME in 2 years working in the café (or shopping in general) Corey accurately selected the correct change!
M-.65 change…C=2 quarters, 1 dime, 1 nickel
M-16.10 change…C=1 ten, 1 five,1 single and 1 dime
The true test…she nailed it again during today’s shift!
Corey truly doesn’t understand why this makes me want to jump up and down and brag to everyone that crosses our path. The truth is these mundane, inconsequential, often overlooked moments that came effortlessly pre-accident, now gives me a rush of adrenaline and re-energizes my emotions. It fuels hope. It validates and gives purpose to the days that fatigue tries to overpower our tenacity. The struggle to keep pushing and create new versions of the monotonous exercises can cause us to virtually wear blinders and diminish our focus. But then, the light switch turns on and I see the new connection, Corey’s still healing.
On our drive home this afternoon, Corey turned to me and said, “thank you mom”
M – for what?
C – for taking me there (she pointed behind us)
M – where?
C – to work (she remembered where we came from)
C – “I hate getting better but I love recovering”
NEVER GIVE UP and NEVER GIVE IN, xoxo
7yrs; Day 2574 – Healing
Hi Everyone,
Last week we were given an amazing gift. A couple in our community generously donated a vacation to San Diego for Corey’s 25th birthday. This opportunity allowed us to fulfill a bucket list item and create new memories.
As you know, Corey’s memory loss is severe. In the past (and present)she often can’t recall events that happen within her day let alone the past week, month or previous year(s). I’ve noticed a change in her since June/July. She is much calmer, has better responses and can handle conversations that require more advanced reasoning skills. The ‘brain fog’ seems to be thinning. The day after our return home, we practiced our memory recall exercises. For the first time in 7 years, she was able to recall a single piece of each day from our trip. The individual memories were not in detail but when asked “describe the picture you see”…she could give a vague description that I could place to the experience within each day. A few descriptions reflected a piece of the day I forgot, yet she recalled. It was very exciting. That being said, as we continue to work on her memory recall throughout this week, the descriptions are getting more vague and slipping away despite showing her the photo’s capturing the trips events.
C – I don’t remember but I know I liked being there.
This week she started back at the GoBabyGo Cafe. First day back, she handled the cash register and standing for 40 mins (30 without sinking knees) then she came home to get in our home harness and help me cook our 1pt chili recipe. Another 30 minutes of standing.
Living with the diagnosis of TBI but not knowing the prognosis of recovery is incredibly frustrating. We live in the moment yet can’t help think about the “when” of healing. We could stay home and wait for “it” to happen, or we can LIVE because the reality is, we have TODAY.
Corey is getting stronger because of the enriched environments we seek to experience. This isn’t necessarily a therapy tool…it’s a tool for all of us to use daily. Conversations, laughter, shared moments, paying attention to the little details of our day that we’ve come accustomed to overlooking because they are ‘always’ there; these ‘ordinary’ examples are what gives us TODAY. HEALING doesn’t come from the regrets from the past nor the worries or impatience for the future, but the perspective, observations and appreciation of TODAY. Recovery is recognizing it and Living is acting on it.
Never Give Up and Never Give In, xoxo
7 years; Courage is Contagious
Hi Everyone,
I can’t believe it’s Year 7…sevens are lucky…after last year, we’re ready…bring it on!
I apologize for our virtual absence. Corey’s fall November 15th of last year leveled us both; physically and cognitively for Corey, emotionally and spiritually for me. Corey lost almost all of what she worked so hard to regain. We both had to start over, AGAIN; bigger problem, I was barely holding onto what little energy I had. I lost my words from pure exhaustion. I’m not going to lie to you, it’s been dark. So dark at times I didn’t want to read my own writing. I swear we’ve worked harder this year than we did in year one to get through this setback.
Fortunately, a dear friend suggested I read Rising Strong by Brene Brown. I was happy for the referral but most grateful that my heart and mind were open to the messages I needed to read. Here are a few lessons that helped me rekindle my inner-strength…
‘The process of struggling and navigating hurt has as much to offer us as the process of being brave and showing up’.
‘Vulnerability is the birthplace of many experiences; Love, Belonging, Joy, Creativity and Trust. ‘The process of regaining our emotional footing in the midst of struggle is where our courage is tested and our values are forged’.
‘Rising Strong changes not just you, but also the people around you to bear witness to the human potential for transformation through vulnerability, courage and tenacity’.
‘Rising Strong demands the foundational beliefs of connection and requires wrestling with perspective, meaning and purpose’.
Every morning since April, I lie in bed and wrestle with those foundational beliefs. And every morning, luckily, they win…
Corey’s not going to get out of bed everyday if I don’t get up first.
Corey’s not going to walk if I don’t extend my hand to help her stand.
Corey’s not going to regain strength if she doesn’t exercise
Negative thoughts don’t help our healing/recovery
‘We can choose comfort or courage…we can’t have both’
Courage creates change – change won’t happen if we don’t get out of bed!
My morning affirmations – Corey’s recent achievements
‘Corey’s physical walking is straight, strong and balanced’ – Corey is walking 500’ in the grocery store again.
‘Corey’s memory is strong’ – Corey’s cognition is changing. She is more aware of her daily schedule, asking questions about her daily calendar, better emotional balance and some short-term memory sparks bridging to long-term memory.
‘Corey’s regained control and function of her left hand’ – Corey’s beginning to grasp crayons and wooden peg puzzle pieces with fine motor/ pincer grip.
‘Corey is social and comfortable making new friends’ (without me) – We have two young women Corey’s age coming to visit a few days a week. Corey’s learning how to overcome her anxiety of meeting new people, asking for assistance from others and working on her separation anxiety from me.
Corey,
Courage is contagious…every day you wake up and face relearning something you once could do with ease. Every day you get mad at yourself because you can’t “do it” the way you used to and you’re mad at yourself because “its” not coming back fast enough. The courage it takes to want that change and fight for that change is the reason your story is contagious. We bear witness to your potential for transformation. Your courage, tenacity, vulnerability, expression of pain, process and perspective has helped me stay connected and keeps us learning from each other.
Although I do agree with you, “this is taking forever”, thank you for reminding me to Never Give Up and Never Give In, xoxo
6yrs; Day 2358 – Insurance, Therapy, Advocacy
Hi Everyone,
We have quite an update for you!
To begin, for anyone interested in Corey’s documentary BRAIN CRUMBS, the Wilmington Riverfront IMAX theatre has given FarmCat Media one of their theaters for a private screening. This means tickets are NOT open to the general public and cannot be purchased at the door. If you can join us, you are invited to go to www.www.recoverythyme.com (Corey’s website). FarmCat Media will be submitting the film to several Independent Film Festivals as an educational film promoting awareness, education and an innovative approach for the recovery of Traumatic Brain Injury survivors.
RECOVERY THYME – In addition to the documentary invitations, we’ve added a SUBSCRIBE link. Our carepage family is very important to us. The carepages have been a great communication tool; however, many of you have reached out privately because of admin issues in receiving the notification alerts. For this reason, we began to cross post to my Facebook page. Not everyone uses Facebook and we want to continue to share Corey’s progress. Corey’s webpage is the perfect bridge and will be managed by FarmCat Media so if there are issues with notifications or postings, we can call and actually reach our administrator to help fix it! We hope you will subscribe to follow Corey’s continued recovery as we transition from carepages to her website.
Therapy – bad news with good news…advocacy wins again!
Corey’s team recently submitted for more sessions. She has completed 24 out of the annual 60 visits insurance provides for PT/OT. Despite the detailed notes documenting her progress from December 7th through March 2nd, the medical reviewer denied further coverage stating that the diagnosis of a ‘concussion’ approves episodic care not long-term rehab.
This is the first of many issues with a 3rd party provider. What is a 3rd party provider? Most insurance companies hire an outside company to review all claims and requests. There is a checklist for every diagnosis. Every patient is a number and often the checklist of symptoms vs. ‘typical’ plan of care for that diagnosis is often the “standard” that every case is measured against. The reviewer often misses and/or does not completely read the documentation provided about the individual past the checklist. This is what happened with our most recent submission and subsequent denial. What the 3rd party company depends upon is our acceptance of their decision. The general public often does not realize logistics involved with the submitted information or the protocol used during the decision process. Therefore, a denial is often accepted by the insured individual without question and the insurance company doesn’t have to fund the needed treatment.
Fortunately, we have learned the process and this is where the advocacy lesson begins for those that haven’t. It’s ok to ask why? What was the basis for the reviewer’s decision? In Corey’s case, yes; she sustained a concussion on November 15th…BUT…it was a concussion on top of a severe brain injury. The reviewer did not look at Corey’s history, just the diagnosis. IF the reviewer looked at Corey as an individual, the documentation submitted by the therapy team supported and proved the 24 sessions used over 12 weeks were needed to strengthen her swallowing so she no longer choked on liquids and solids causing aspiration. Her speech was affected as well as her limited memory. Cognitive and Speech exercises were required to recall what was just barely improving. Her PT took 12 weeks to re-establish the brain signal to the muscles so her knees didn’t buckle with every step and her balance was stabilized to take each step. Her OT strengthened her ability to lift the weight of her arm in order to begin to have range of motion and hand movement to open and grasp objects for daily function.
I’m happy to report that we expedited an appeal forcing a new reviewer to re-read the documentation. The new set of eyes approved 12 more sessions, giving Corey an additional 6 weeks to continue therapy. Every session is critical for us to help her regain her pre-fall level of daily function. We continue to fight, question and educate the “decision makers” holding them accountable to look at the individuals NOT the “standard” protocol.
Insurance is a “for-profit” NOT “for-patient” industry. Please don’t forget, we do not ask for grants for services from our insurance companies. We pay into ‘the insurance of knowing’ we can be cared for when we need it. This is the definition of Insurance. I’m not sure when or how this framework became diseased or how we can reframe it but this is why I will continue to advocate for Corey and others to find their voice, choose the most affective words and fight to be heard.
Corey is very excited to share her voice through her website. She is most excited about the ASK CHEF COREY link. Your questions will assist her with her cognitive therapy exercises. She looks forward to researching the answers for your requests regarding new recipes or culinary tips. So please subscribe as she begins to blog weekly. We hope you will stay in touch with Corey’s progress, xoxo
6yrs; 4 months – Brain Injury Awareness
Hi Everyone,
March 1st begins Brain Injury Awareness month. We were hoping to kick off this month with Corey’s big announcement, but like most lessons we’ve learned during this journey, we need a little more time. Your only hint is…Jon, FarmCat Media, is working with Corey and me on a special project that will continue to help Corey with her Cognitive Therapy and many of you will be inspired by the result.
Although the big announcement is a week or so away, we do have lots of good news to share. It happens to coincide perfectly with our advocacy for brain injury awareness.
To begin, Corey is concluding her last week of approved coverage for out-patient rehab. This is always a trying time for us; however, Corey continues to show improvement which will help our therapy team submit for more time by weeks end (start your prayers). Good news; last Thursday, Corey had a personal best with Natalie. She walked 376 feet in a 6 minute timed test. That’s not Corey’s all-time best but it is her current best since her fall November 15th. Natalie was ecstatic! At the ‘finish line’, Natalie asked, “How do you feel? Does anything hurt?”
C – Nope
N – if you had to keep walking, do you think you could?
C – Sure, where do you want to go?
We were thrilled. Her left leg was strong, her steps were balanced and her stride was consistent. Corey has also shown strength climbing a flight of stairs and improving her speed and repetitions for her matte exercises.
Corey’s left arm is beginning to gain range of motion and her hand is beginning to rotate 180 degrees from palm down towards palm up. Anne has seen greater hand movement as well. Corey is beginning to consistently use her thumb with each grasp, lifting assorted sized objects. Her strength is still not where it needs to be, but she is beginning to lift a 1 and 2 pound weight.
Now for the most surprising change; we have written in the past about Corey’s ‘moments of clarity’. Her ability to be present, enjoy an activity and engage in conversation, unfortunately, with the severe memory loss that moment is often forgotten within minutes of moving on. At best, Corey can remember a vague blur of the experience. If we talk about an event, she appears to know it but can’t describe it even with clues.
In the last two weeks she is initiating memories. This has not happened in 6 years. The most profound was this weekend. We went to Long Island to visit family and see her cousin perform in a play. We stayed in my father’s house. Saturday morning after I gave her 6am medication, we lied back in bed to sleep a little longer. As I started to doze off, Corey said, “Mom, I’m remembering something”
M – What do you see? (I ask her to picture what she is trying to remember and describe whatever details she sees in her mind’s eye. This has been helping both of us ‘piece together’ her recall)
C – I used to sleep in this room
M – Do you see anyone else?
C – Billy and his sisters but I don’t know there names
M – Were they with you in this room?
C – No they were downstairs. I slept here.
In 2008, Corey spent the summer as a CIT (counselor in training) at my father’s company The Rinx. My younger sisters’ children went to the camp that summer, too. They all lived at my father’s house.
Saturday night we went to my older sister’s house for dinner. We were planning on attending her daughter’s performance in RESPECT at Theater 3 in Port Jeff. Prior to leaving, we watched a CD of last year’s performance of Me & Jezebel. (this detail will reveal its importance shortly)
Sunday after I packed the car to head home, I came in to get Corey who was sitting at the dining room table in my dad’s house.
C – I’m having another memory
M – what do you see?
C – (looking at the chairlift across the living room) I remember Dedema going upstairs waving her hand (Corey motioned the classic beauty queen wave). She would do that when she said goodnight.
Back home on Monday, we went to my girlfriend’s house. After spending time in her family room, Corey asked, “I’ve been here before. Is that right”?
M – yes, that is right. What do you see?
Corey pointed her finger and motioned it in a circular pattern – speaking to my friend, “you have boys and they were running”
Corey used to babysit my friends sons in their home when she was 12.
Today, we had a friend come to visit. She asked Corey how her weekend was. We mentioned going to see the play. Corey seemed to connect to the statement, so I asked her to tell our friend about it.
C – it was about Elizabeth and her roommate
I was shocked and elated; she was remembering the characters from Me & Jezebel
M – That was the CD we watched. Can you picture the theater we went to?
Corey moved her hand horizontally from right to left – what’s that called?
M – the stage? She laughed because she couldn’t remember the name
Corey lifted her hand and raised her eyes as she pictured the set. She pinched her fingers and motioned several short vertical movements – there were lights
M – yes, it was a simple set. It had platforms and hanging lights that changed color as the scenes changed. What else do you see?
C – Elizabeth talking and singing
M – Yes, she was the narrator and she sang with the cast.
Up to this point, Corey has not remembered this much detail from an event nor has she recalled it 4 days later! What is happening? Is it natural healing? Is it the event? Is it her memory starting to re-fire because of the environment? The only change we’ve made is diffusing Peppermint essential oil in her room when she sleeps. Corey never sleeps through the night. If we get 2-3 straight hours it’s a good night. In the last two weeks, we’ve had 3-4 nights of her sleeping 4-5 hours. Maybe it’s the oil helping her to sleep soundly. Is the restful sleep helping her brain with the neuro-plasticity we keep reading about?
The take away in this month of TBI awareness is healing continues. For all those that think cognition, memory, and physical abilities have limits…I invite them to meet Corey. She, like so many long-term survivors, will continue to teach us all about hope, trust, blind faith, determination, tenacity and living life even when it’s hard. Corey hates that “this isn’t fair” but she keeps saying, “I will do it”, “not YET”, “I proved them wrong, didn’t I mom?” … Yes you did and yes you DO! xoxo
6yrs; 3 months – big announcements
Hi Everyone,
Today marks 3 months since Corey’s concussion post initial injury. We both have been working hard to bounce back. We are happy to report lots of progress and a few BIG announcements!
Since we last checked in, our advocacy has helped to cover therapy through March 2nd.
Corey’s speech and swallowing are back to ‘her’ baseline. She has been working on S, T, Th, and D sounds. We’ve created a custom calendar and journal to assist her strategies regaining daily memory and she is using it (she remembers it exists!).
Corey’s left arm is gaining range of motion and her left hand is opening. She’s un-clenching her fist and using her thumb for a full-handed grasp with larger items. She is also starting to show fine motor control to pick up smaller objects. Because there is still tone restricting her range of motion, we’re considering botox to help.
Walking is also improving. Corey’s legs have not buckled with each step in over a month. In fact, except for an occasional “sinky knee”, she’s increased her strength for balance and standing as well as stamina for long distance walking. She’s up to about 300′.
We found a new music therapist, Carolyn, who is incorporating Corey’s speech homework and cognitive exercises within her singing sessions.
Our spirit is healing, too. Set backs are hard for TBI survivors and their caregivers. For Corey, she was angry again. She’s tired of her recovery taking so long, and now she has to work twice as hard to use/move what she had regained. For me, I have used the last 6 years to work hard to stay positive yet realistic as I focused our perspective towards progress; silently working twice as hard to heal from the depression, anger, and resentment of Corey’s initial injury. Corey’s loss of nearly 70% of the function she regained over the last year leveled me emotionally. I hit a wall that nearly shattered the hope I began to allow myself to embrace. I was thrust back into the crisis mode, the fight for insurance coverage, the physical demands of helping her with my body now 6 years older and already fatigued.
Every day for the last 3 months, I’d open my eyes, curse the start of a new day, force my feet to hit the floor and stand up to get Corey out of bed, dressed and moving again. Internally, I chanted our mantra with each breath. We’re not going to go anywhere if we don’t get out of bed, down the stairs and back out that door to live life.
That leads us to our first BIG announcement…SAVE THE DATE…6:30pm Saturday, April 22nd, Jon Ristaino and his team at Farmcat Media are excited to premiere the 5 year project documenting Corey’s recovery at the Wilmington, DE Riverfront IMAX theater. We will have details for ticket availability by March 1st when we announce our 2nd big announcement…stay tuned…and thank you for continuing to encourage us. Your friendship and love gives us strength to keep chanting our mantra, NEVER GIVE UP and NEVER GIVE IN, xoxo
6yrs; 3 months – Resilience
Hi Everyone,
I attended a seminar a few years ago presented by Marilyn Spivack. She is the ‘godmother of brain injury’, creating the Brain Injury Association of America. She opened the lesson with a question. “Resilience; Is it a trait or a process”?
Tomorrow will be two months since Corey’s fall. Her concussion added to her existing brain injury has been a new education in TBI for us. She has been receiving Speech, OT and PT twice a week for 5 weeks. In that time, she has made some progress.
Speech not only works on talking, the therapist also works on the mechanics of eating and cognitive skills including reading, memory, reasoning skills etc. The concussion affected Corey’s swallowing and speech. Prior to the fall we saw some signs, ‘sparks’, of short term memory, which quickly dimmed after the fall. Corey has been practicing tongue exercises to strengthen the muscle not only to move the food to the back of her throat but to control her swallow as well. A daily ritual we all take for granted until we choke. This week she was safely cleared after eating a full menu of varied foods in size and texture including liquids. The exercises have also led to better articulation almost returning her to her baseline speech. We created a new calendar that has been working very well. Corey has been confused about the time lapse in her day and week. The calendar not only reflects the current day but can also show her the previous day, upcoming days and has a journal-like section she titled “Memory Notes for Today”. Our version of a day timer helps Corey write what she accomplished but also gives her the answer to her constant question of what are we doing today/tomorrow? The calendar is also easing her separation anxiety (Nervous Nelly has returned…at least she didn’t bring Corrine with her).
Anne, OT, gave us several home exercises to strengthen Corey’s left arm and hand. We named her favorite “Jackie’s toss across”. JohnPaul’s wife, Jackie was a tennis player in college; team captain. We picked up a case of tennis balls at Costco, filled an umbrella stand and Corey keeps them at her left side. She reaches in with her left hand, can now grasp the ball and uses her right hand to assist her left arm up to the height of the table, across her body to release her grip and drops the ball on a tray to her right. Then she reverses the process. She’s gone from 3-4 reps to just over 30. She hopes to stand and hold a racket by spring to have a ‘kitchen’ volley with Jackie.
Anne has also begun to use Electric Stim on Corey’s left arm, shoulder and back muscles. Corey’s responding well, which is a good sign there’s no nerve damage. They will begin exercises using the stim during their sessions to help her range of motion.
Natalie, PT, has had the greatest challenge. Corey’s walking is inconsistent. Her knees are still buckling and her left foot still swings to hit the left heel on the right foot as she takes a step. We have not exercised on her bike or in her home harness for this reason and because she hasn’t been able to stand or balance long enough to ‘workout’ at home. It’s taken Natalie 5 weeks to work on this puzzling inconsistent pattern. One walk Corey’s knee collapses with every step. The ladies sit to rest and next walk Corey nails it then loses it. Natalie tries one technique; it works, then the next trial it fails…this is brain injury. This is also why an individual needs an extended length of stay. Keep in mind Natalie’s 5 weeks has been 10 one hour sessions…insurance continues to misunderstand the process required for the therapist to assist in the survivors healing and recovery. Natalie is now looking at Corey’s left hip. This creates a new question. You can put a brace on other parts of the body, what do you do with the hip? It takes exercise and healing. We have one more ‘approved’ week…will insurance let that happen in rehab or will we be asked to ‘wait’ at home until she’s “ready”? I think you all know what MY answer will be….yes, the stressful battle continues…
So, what is the answer to defining Resilience? Is it a trait or a process? Is it a trait that drives the process or does the process create the trait? Is it something learned or inherent? There are many factors that go into its definition. I will be using the pronoun WE because challenges (any challenge we face) affect the individual, family and their friends. Yes, we’ve had a set back but not as far back as where we were. It has affected our physical, mental, emotional and behavioral responses. We have cried, screamed, cursed, fought and talked about our frustrations and fears. We’ve been slowly regrouping, creating new strategies and rebuilding stamina (both physical and emotional) We remind each other goals change as we change but it doesn’t have to change our ability to Hope and Dream. Resilience is a great word for 2017. It will be defined differently each day but I think that’s part of its true meaning, xoxo
6yrs; Day 2282 – What will the new year bring?
Hi Everyone,
The last 6 weeks is a blur. It’s hard to believe we’re ready to turn the page on another month, let alone a New Year!
I saw a cartoon this week; two friends sitting on the crest of a hill starring off at the horizon. One friend asked the other, “What will the New Year bring”? The friend’s response, “365 opportunities”
The New Year is our opportunity to consciously look forward, keeping our goals in sight. How do we work on our plan to ‘get there’? It doesn’t mystically appear by waiting patiently. It’s the daily work that delivers our prize. That’s the hard part; recognizing the achievements of each day with the understanding that those achievements will change with each day. Some day’s they will build upon each other, some day’s they will present a loss of what we gained yet help us discover something unexpected and new. None of which could be possible without the perspective of looking for the days opportunity.
Corey has been working with her original team of therapists twice a week for the last three weeks. Fortunately, she is showing some signs of improvement from the effects of her fall 6 weeks ago. Her left arm lost this year’s gains but her muscles are beginning to loosen so Anne can begin functional exercises to redevelop her strength and dexterity. Corey’s leg strength is rebuilding so Natalie can help her stand, balance and begin to increase her stamina to regain her long distance walking. Currently, she is walking between 30 and 100 feet depending on her ‘sinky’ knees. Laura is working on speech therapy; this includes swallowing and cognitive exercises for memory. Corey is working her tongue exercises which not only move her food to the back of her throat but also helps control it to safely swallow; it also strengthens the tongue for pronunciation of letters, sounds and words for increased clarity. Corey is reading out loud and in-session, capable of correctly answering comprehension questions. We are hoping insurance recognizes these ‘functional’ improvements to allow more visits.
As I sit to compose this update, I asked Corey what she’d like the New Year to bring. Her 2017 list;
To walk alone
To be physically independent so she doesn’t need any helpers
To improve her memory
To make new friends (especially in the culinary field)
To publish a cookbook of family recipes
What will the New Year bring for you?
We hope you look for 365 opportunities to Never Give Up and Never Give In, xoxo
6yrs; Day 2266 – My birthday gift
Hi Everyone,
It’s my birthday. My gift is Corey being accepted back into Bryn Mawr’s Day Treatment program.
Corey started this week. That being said, the insurance world hasn’t changed. She was approved for 8 visits. Sadly, last weeks evaluations counted for 2 visits! She is scheduled two days a week until the 29th of this month; IF she shows functional improvement or we can show medical necessity, she could get more visits for January.
Corey’s throat muscles have weakened. This is a neurological affect from the fall. Her speech is still slightly slurred and she is working on swallowing with a speech therapist. We’ve had a few instances of choking and a few scares with beverages “going down the wrong pipe”. I didn’t realize my first alert training would come in handy until I had to perform the Heimlich at the dinner table twice! I only have ONE RULE in my house since Corey came home June of 2011…NO CHOKING! Obviously my hairdresser will be staying in business coloring the recent greys as Corey disregards this mandate.
Corey’s left arm and hand has lost significant function. The mere weight of her arm is too much for her to lift. Anne, OT, is encouraging; “it’s only been a month”. We are not working on strengthening the muscles, just working out the tone and stiffness at this point. Anne did find some bones in her wrist that are “crunchy”. This could be part of her wrist pain even though she didn’t fracture her wrist when she fell.
Walking has been a challenge. Corey’s left leg is a little stronger than it was immediately after the fall but it still buckles and her knee gives out randomly. She’s very weak. Natalie is working with Corey on balance and standing. We talked today about going back to her old brace to limit the movement in her ankle which may help her knee stabilize as she steps through her gait.
Emotionally Corey is handling this set back fairly well. Although, yesterday we were exercising in our home gym and she was not talking to me or looking at me. After about 40 minutes of Corey silently and obviously begrudgingly working with me I asked, “Hey! what’s going on? You won’t talk to me or look at me”?
Corey’s face was stern; teeth and jaw clenched. With attitude she said,”PENNY”!
M-Penny? What do you mean penny?
C-I’m Pissed Off Penny!
M-(laughing out loud) did you just create a new alter ego?
C-YES! I’m pissed off I have to do this!
M-well, nice to meet you Penny…give me 5 more
Another birthday gift – it wasn’t Corinne!
There’s a saying that goes something like “it’s not how many times you’ve been knocked down but how quickly you get back up”. Easy to understand. Easy to say, yet in the midst of the setback it is near impossible to imagine “quickly” getting back up or enthusiastically moving forward. The setback feels like a knock-out! How do we roll to our side, lift ourselves on to all fours, push up to our knees, grasp onto those ropes and find the strength to stand and keep swinging?
It’s been devastating to feel and see the majority of this years progress lost with one miss-step. Setbacks can bring with it a powerful negative momentum that is difficult to overcome. It hurts when you have a setback. It’s no fun. The work is now doubled to make up for lost ground.
Setbacks can be a powerful teacher. It stirs the early emotions from the crisis stage we carefully tucked away to stay focused on getting us to the present. Now that they have resurfaced, the trick is not becoming consumed by them. They are the one two punch we never saw coming.
The greatest birthday gift received today – FRIENDS!
It was a very hard day. I have been very sad since the fall. Corey was weaker today and struggled from the moment she woke up to the moment I tucked her back into bed. Normally, I love my birthday but my heart has been heavy until I signed on to facebook and read the text messages on my phone. The outpouring of well wishes, private messages, love and encouragement gave me strength to write this update. I can’t thank you enough for helping me reach out to all of you. I’m not out for the count yet, just a little shaken.
I’ll close with my last gift; words from my mother. When I was troubled I would call her and talk with her for hours. She knew how to listen and when I was finished sharing she’d answer with a simple statement or phrase that always seemed to help steady my direction. Tonight she’d say, “The difficult is easy, the Impossible just takes a little longer”.
Thank you all for turning today into a celebration, xoxo