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