EPIC Concussion Treatment – Aimee’s Day to Day Experience at CFX
Everyone’s experience is different. Anyone experiencing a concussion or TBI has a different story, different outlook on life, and different symptoms, their experience of EPIC Treatment is going to be different as well. With that said, here’s my experience. I was injured 17 years before I received treatment, and you can read more about how I got my injury in another post here if you are interested. Hopefully, my story validates some of your experience, gives hope, and provides direction.
To begin with, I was surprised my schedule wasn’t more packed with activities. I questioned if this would work. I received over 25 hours of treatment during the week when I was expecting a 40 hour week. By the end of the week, I appreciated that I didn’t have a 40-hour schedule because I don’t think my brain could have handled it.
I walked into the office on Monday morning. I was handed the check-in questionnaire. I filled out the Post Concussion Symptom Scale (PCSS) check-in and check-out questionnaire each day of treatment. CFX uses the questionnaires to monitor symptoms throughout the week, and is used as a measurement in their research.
As I sat down to complete the simple form, I started to cry. I’m not against crying, but it takes a lot to push me to tears. I wasn’t sure what was going on. I called my husband. He said a quick “Focus, give it your best, and I love you.” Then I met Porter. Porter is one of the Patient Care Coordinators and I really felt support from him while I was at Cognitive FX. I didn’t have any idea what to expect. I was nervous. He gave me a tour, and we got started.
*Sometimes you might also have an fNCI on your first day. I got my first scan done before I started treatment for my brain injury.
I first met with a Neuromuscular Therapist (NMT) where I learned my diet needs serious improvement, and I need to drink more water. This was not a surprise to me, but they gave me great suggestions to start eating better. I’m completely overwhelmed by the task of improving my diet and exercise routine, but they encouraged me to go slowly and start small.
Then other patients and myself there for EPIC Treatment that week met as a group with a therapist in the conference room to go over Mindfulness.
Mindfulness is the ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us. The therapist walked us through a Mindfulness training and awareness exercise. Some in the group struggled with the concept, but I thought it was awesome.
Then I had my lunch break, where I spent an hour talking to everyone else doing treatment. Not everyone is as talkative as I am and were content to relax or sit in silence. Those of us that talked shared our injury stories, our fears, anxiety, and expectations. By the end of the week, I had made lifelong friends.
After lunch, I experienced the relaxation room where I relaxed for a specified amount of time listening to Brainwaves to retrain my brain how to relax when needed, get pumped when needed, and to be alert and focused when needed.
My brainwave time was my favorite! I loved being forced to relax. I’m a Type A personality and don’t relax enough. Falling asleep was an option I looked forward to as well, though I never actually napped.
It was then that I got to experience DynaVision for the first time. DynaVision is a big black square on the wall with buttons that light up randomly. I was instructed to touch the lights as quickly as I could, and I was timed. Unbeknownst to me, they counted the number of times and how long it took to hit the lights each time I participated in this therapy. It was challenging, but enjoyable.
To be completely honest, Brain Games were my least favorite part of my EPIC Treatment, probably because they were the most difficult. You’ll find the treatment modalities that are your favorites, and they’ll probably be different than mine. In my experience, the activities you dislike the most are the ones you need to do.
As I was leaving at the end of the first day, I thought “this isn’t a big deal. I can do this.” I had my doubts about its success, but I was hopeful. I was also optimistic because it didn’t seem as hard as I imagined it to be and my headache hadn’t worsened. I was grateful it wasn’t brain surgery or as expensive as brain surgery!
Tuesday. My first long day. I came in feeling slightly anxious, but not as worried as I had been the day before.
I started out with an NMT helping with my neck injuries, headaches, and stress through stretches, pressure points, and massage. I had been told the herniated discs in my neck would take longer to treat than my brain and that ongoing NMT would be necessary.
I then met with a Cognitive Therapist to practice comprehension, memory, and language skills. A few of the activities I would do throughout the week include reading articles and recalling facts about them, developing stories to assist in recalling abstract (unimportant) information given to me, and learning to rely on multiple senses while processing information. It was frustrating and overwhelming, but the feeling of pride I experienced when I remembered something was profound.
I then did Brainwaves briefly, DynaVision, and Brain Games. I was ready for lunch at that point and again enjoyed talking with the other clients.
Following lunch, I met with another Cognitive Therapist where I was asked to recall information learned, read, and discussed in my earlier session. With some prompting, I did better than I imagined.
My final session of the day was again NMT. NMT was helpful to my headaches, and I enjoyed every second I spent with the therapists. I was frequently impressed by their knowledge, skill, and friendliness.
At the end of the second day, I was questioning if this could possibly work, with only 3 more days of treatment. My cautious attitude was taking over. But, I committed to keep going and giving it my best. I knew the CFX staff were giving their best. I was going to do this. I listened to the brainwave app, and it helped me relax.
Wednesday. My longest day. Definitely the most exhausting day.
I met with a Cognitive Therapist first. I was asked questions about things I’d learned and read yesterday and challenged to add to the list of items I’d need to recall later.
It was frequently a struggle for me to move from one session to another, I wanted to continue talking to the therapist. Each therapist was very personable, supportive, and friendly. I knew we needed to stick to the schedule, but it was hard to contain my talkative nature.
I met with an NMT again. I loved my NMT sessions. I looked forward to them each time. Physical exercise was then introduced in the NMT sessions. I used a treadmill, briefly, and a stationary bike. I struggled with the treadmill at first, due to balance issues. I saw some clients do kickboxing or go outside with a football.NMT was really focused on helping each person with their indidividual abilities.
I then met with a Neuro-Occupational Therapist to work on balance, dizziness, language, focus, and attention. Activities I participated in throughout the week include word games, puzzles, multitasking (balancing on one foot, answering questions, touching numbers on the wall, and catching a ball simultaneously), along with other recommendations I could apply to daily life after treatment was complete.
I then had my lunch followed by NMT, Brain Games, Brainwaves, DynaVision, and another session of Neuro-Occupational Therapy. Each therapy was getting more complicated, but less difficult as time went on. I was getting the schedule and routine by now. There was more laughter, joking, and comradery, but I also felt tired by the end of the day.
By the end of the third day, I was figuring everything out and enjoying my time at CFX. It was better than being at work! I was feeling more confident about my CFX tasks and schedule. I chatted with other patients, and we all continued to feel cautiously hopeful.
Thursday. I was apprehensive for another long day.
I started out with Cognitive Therapy, having to recall details of the article I’d read, random words and pictures I’d been told to remember from the day before. I was rather impressed with the amount of information I had retained, even though the information I was memorizing meant nothing to me.
I then did my Brain Games, Brainwaves, and DynaVision. By now the DynaVision exercises were getting more challenging. For example, touch the red lights with your left hand and the green lights with your right, while balancing on a Bosu Ball, and thinking of words that start with a suggested letter.
I asked Porter to record me doing the most demanding DynaVision exercise. It was not quite the video I was expecting. I was incredibly slow and awkward. I struggled to do the requested tasks, but my brain was being pushed, which was exactly what it needed. I loved feeling control over my brain again. It was empowering.
I then had another NMT session followed by my lunch. During lunch, we talked about our expectations and nervousness about our post fNCI scans we’d all have done the next day. It was hard to believe we were almost done with our week of treatment. No one had noticed any significant changes, and we were fearful that meant the treatment wasn’t working, or that we’d need additional days of treatment.
Following lunch, I played more Brain Games and met with another Neuro-Occupational Therapist where I learned of the game Balderdash. My competitive nature came out when I tried to beat the OT at his own game. And I did! I felt so proud. It had been a long time since I’d been able to feel competent and enjoy a game.
I participated in Brainwaves and DynaVision one last time before I was done for the day. DynaVision challenges were the hardest yet. The activities and challenges get harder each day, and for me, the fatigue did as well. This made it extremely challenging, but also rewarding.
At the end of the fourth day, I was exhausted and ready to be done. But, the idea of no longer seeing my therapists at Cognitive FX made me sad. I learned to trust and appreciate them. I’ll forever be grateful for my week with them.
Friday. I was nervous, apprehensive, and anxious for my last day and my post fNCI scans. I had high expectations for myself and my treatment.
I did my final Brain Games and Brainwaves and one last round of DynaVision. We compared my scores and reaction time to earlier in the week. The difference compared to my first time was unbelievable.
I did my exit review with a therapist who made sure I was ready to go back to my normal life. I then did my post fNCI scan. Probably because of my expectations, I was confident I didn’t do well during my post-scan.
When I finished my treatment and had completed my post-scan, I filled out a feedback survey to share my experience with CFX. I talked with multiple therapists and staff. I was impressed by their willingness to ask for, listen to, and accept feedback. They care about the experience of their patients. It is obvious in everything they do.
I was scheduled to meet with Dr. Alina Fong on Tuesday, as she was out of town for a conference, and was sad I’d have to wait four days to get my results. I was telling everyone goodbye when I talked to Dr. Mark Allen who said he was compiling my scan results just then. I got excited and nervous. I told him I could hardly wait for my results, and I thanked him and continued telling everyone goodbye.
A few minutes later, Dr. Allen found me and gave me my results. I was so grateful he went out of his way to deliver and review my score with me.
The difference was incredible! I couldn’t believe it. I was ecstatic!
One week of treatment and the outcomes speak for themselves. I wasn’t expecting to feel the way I did immediately after treatment. But, honestly, I didn’t know what to expect.
I could NOT stop talking. I was using words I hadn’t used in a long time. I almost felt like I was going to jump out of my skin. Everything looked brighter, crisper, clearer. How could I feel so different? I was multitasking in ways I hadn’t in almost 17 years.
The closest thing I can think of to describe how I felt that day was a manic episode, but without the negative aspects. It was exhilarating and thrilling. I asked the staff if my experience was “normal.” They validated my concerns and said it would take a few days for my brain and body to align again. I was so excited.
I couldn’t sleep until about 2:00 in the morning. I chatted with a fellow Cognitive FX graduate, who also couldn’t sleep, in the Facebook group they have for patients who complete the EPIC Treatment. This group is a great resource I’ve used numerous times since I graduated from CFX.
Tuesday After Treatment:
By Tuesday, when I met with Dr. Fong for my final Report of Findings, I felt like myself again. A better version of myself, with a functioning brain.
At my follow-up meeting, Dr. Fong made recommendations for ongoing at home activities to continue improving and referred me to Dr. Devin Duval for eye therapy. I learned I need to do physical therapy for my eyes. I had no idea that was a possibility. These activities will help with any continued headache problems, difficulties reading, and comprehension of the material I read. I appreciate being connected to other experts in their field, and that CFX provides referals to others who can continue helping patients like myself get better.
I’ve followed through on all recommendations from Cognitive FX and am grateful to have my life back. I have significantly decreased the stimulant medication I was taking for my narcolepsy since my brain injury and have continued to notice improvements over the past few weeks. It is truly unbelievable. I am happy with the treatment, results, and changes I’ve experienced in my day to day life. If I had to do it again, I’d choose Cognitive FX in a heartbeat. I could not be more grateful.
If you have questions about my experience at Cognitive FX, please comment below with your question. You can also contact Cognitive FX here.