TL/DR: The best news is that the MRI indicates that every part of my brain is intact and functional, which ultimately means there is room and possibility for a nearly full recovery. The good news is I'm already seeing an incredible improvement in my sleep and general mood, which bodes well for my continued efforts at recovery. The least good news, this week has already been really difficult. Had quite a bit of setup to do to have the space I need, and the couple times I've been able to do a full routine it has seriously kicked my ass. There is still a lot of work to be done. Obviously, I’ve hinted at it, but I want to make it abundantly clear what we were starting with here. I have quite literally spent over 80% of my life in bed for the last year. And even before then, bedtime for me is 9 pm, and I don’t get up until 9 am. That’s 12 hours trying to sleep, only to get 5-6 fitful, useless hours. I’m incredibly fortunate to have a job that I can do while lying down (for the most part), because trying to be active for more than 45 minutes just knocks me on my ass. I worry about being honest about how much I’m struggling because I am so scared of being judged or losing what I have. But my existence truly is tenuous at best. I struggle daily with headaches and a complete lack of focus. It’s honestly a miracle to me I’ve maintained as well as I have. Maybe I’m feeding a fed horse, but I am hella self-conscious about this. I worry people will feel like I’m lying because I have been pretty damn functional considering and words just can’t do justice for how much I struggle and work to maintain that.
I finished last week at Cognitive FX feeling like a completely different person, ready to jump back into life at 100%. Mainly because I want it, so bad, to feel like a “normal” functioning person. We got the exercise bike set up yesterday and I was able to do my interval training. Three goes for 30 seconds getting my heart rate up to 75% percent of a calculated maximum. We’re talking less than 2 minutes of strenuous exercise and I felt completely useless for the rest of the day. I don’t even have the capacity to play video games. I’m not saying all this to gain sympathy (well, maybe a little, I’m raising money after all), but to very clearly lay out how much work I have to do. I want people to understand that even with the results I’m going to share from last week, as good as they look, there is still so much work to do. It’s going to be hard. And I will need support and understanding, and patience. With all that said, I want to share what my brain looked like at the start of last week, compared to the end, and what exactly I’ll be doing for the next 3 months to help maintain that improvement and beyond.
Severity Index Score
First off, Severity Index score, and it's pretty clear at the end of last week it is like night and day. I feel it's worth noting that if I simply went right back to doing what I was before (laying in bed all the time), these numbers would start to go back to what they were. This indicates increased blood flow because CFX knows how to get specific parts of your brain working. Which, clearly they did.
Things evened out here, and I would say this is probably why I'm already noticing that strenuous mental exercise isn't giving me a headache anymore, instead, I'm getting nauseated. A clear shift for me. Not sure exactly about the mechanics, but since the goal is a stronger mind-body connection I'd speculate that I'm kinda getting seasick because other parts of my brain are taking in more sensory input.
This one is one of the main reasons they want me to come back for a second week. While a few things evened out you can see the fourth and fifth columns dropped. This indicates that part of the brain is likely damaged and was working extra hard before and is now like "oh, the rest of you can take up the slack, I'm tired."
This one also contributes to needing a second week. You can see it flip-flopped. This is probably why I'm getting nauseated with my visual exercises.
I can feel this being better. My memory has really been firing since the end of last week. I feel like I can navigate better (less reliance on Google maps) and I've been able to remember the names of actors better. Only minor improvements to be made here.
This one wasn't too bad, to begin with, but the improvement here is a tighter grouping, which means quicker processing in general.
Improvements across the board here. Still some problem areas, but that's what I'll be working on.
This is a synthesis of my self-reported mood and symptoms throughout the week. Things kinda maintained and then got slightly worse until Friday when I felt INCREDIBLE. I definitely don't feel quite as good as I was then, but I do feel better in general.
This update is long enough I don't want to get into the very fine details of what my therapy and recovery are going to look like. I will be sharing more of that as I work at it. But I was told to expect a few different phases.
They didn't expect me to get too much done this week, and that sure held up. But starting next week I will have a pretty strict regimen, 5 days a week, of PREPARE, ACTIVATE, and RECOVER. Prepare is my aerobic exercises to get the blood flowing and stretches. They told me 30 minutes of exercise, that sounds impossible, but I'll try. Activate are my cognitive exercises. Brain puzzles, hand-eye coordination tasks (playing catch), BOARD GAMES (I have to play board games, multiple times a week), activities that stimulate multiple parts of my brain at once. I should be doing 2 cognitive exercises a day. Recover is MINDFUL rest, not mindless. This is meditation, breathing, brainwaves, this is NOT scrolling through my phone, playing video games, or even sleeping. Part of it is working through symptoms, not trying to ignore or drown them out. I was also told this is the most overlooked and most important. We all tend to treat rest as wasted time. This is really where all the magic happens. I should be mindfully resting at least 3 times a day, in between activities. In between all that I have visual exercises I need to do 3-5 times a day, all of which aggravate my symptoms and require time to recover. We're looking at a total of 2-3 hours a day I need to be committing to this, minimum, and that's not even really taking into account the possibility of particularly hard days. And the only guarantee is that there will be hard days. If I'm on top of it I'll have to only do the intervals 5 times a week for 2-3 weeks (Phase 1), before cutting them down to 2-3 times a week (Phase 2). I will need to continue doing the cognitive exercises 5 times a week. Phase 2 continues until I see a significant drop in symptoms. Could be 2 weeks, could be 12, or more. That's the long and short of it. I have lots of hard work to do, and still pretty unsure of what it'll look like in the future. We'll be filming me doing my therapies (Dorian needs practice for film school, and I really want to share some of this stuff with y'all), so definitely stay tuned for more updates.