In the past week I had two extra treatment days at Cognitive FX, the so-called booster days. How I have experienced them, what these 18 days have done with me emotionally and maybe most important: has my trip to Cognitive FX brought me what I was looking for? Is it actually possible to see improvement in symptoms after 7 years of having a brain injury? Spoiler alert: it's possible!
This have been some weeks. After the results of my EPIC week I was upset, because what if the symptoms that trouble and limit me the most would stay? I assumed booster days weren't necessary en tried to focus on that there would still be improvement in the next 1,5 month. I needed to trust this. Even though I was trying my best, I was struggling. The hope of a life with more possibilities and less limitations is so high! Even though I tried to keep my expectations low beforehand, the dot on the horizon was sparkling as never before.
But in the weekend after the treatment week, I was still suffering from overstimulation and I found it emotionally confusing. When we were at Cognitive FX on Monday for some other things, it was immediately indicated that it was wise to schedule booster days. Especially after they heard that I had had many symptoms during the weekend and that I had the time because we could postpone our trip. On Wednesday and Thursday I had two full and tough days. Wednesday from 9:00 am to 4:30 pm and Thursday from 9:00 am to 6:00 pm. I could choose whether I wanted to have another scan made again after the two days. I chose that because by now I know that seeing good or bad news in black and white always has a bigger effect. Assuming it would be positive news, it seemed a lot nicer to take that home than the previous results that I was not completely satisfied with. In addition, it is not every day I think: “yes! I feel my thalamus becoming active ”so it seemed better to know if the days had had an effect.
They turn out to be called booster days for a reason. In those two days, all therapists gave everything they had to get my thalamus, short-term memory and my superior colliculus active. That meant that everyone spent the whole day doing exercises in the three areas that were difficult for me. Those were very different days than the week before! Very tired, headache, dizzy at times. Let's just say that I no longer had to encourage them to make it harder. This may sound like I didn't like it, but the opposite was true. It felt as though my brain had gotten away with some compensation strategies during the week in these three areas and they didn't stand a chance now. I loved it! I welcomed the headache and fatigue with open arms: come on, have a hard time! At one point, Jessie (one of the therapists) said she was going to try something out-of-the-box by adding taste to the training. Your thalamus is responsible for processing stimuli from outside your body (smells, sounds, light) and from within your body (temperature, thoughts, taste). So there I stood on a balance board towards the wall. There was pop music playing and Jessie threw three different colored balls at the wall. They then bumped into it and I had to catch them. I threw one color back to her over my left shoulder, the other over my right and the third over my head. At the same time I had to make a list of famous people from Z to A. In between, I kept getting questions like what did you get with V? And what about Z? But that was not all yet because at the same time I ate chocolate (there is taste!). No punishment at all. An exercise where all areas were busy. And not only those areas, me too!
Thursday evening I went under the scan and Monday I got the result. It has all been worth it! My severity index score has even fallen below the green. The circulation in my brain is therefore above average healthy.
What is even more important for me: the areas that were left behind earlier have all become active again. My short-term memory has even completely recovered in those few days! Those z-y-x..c-b-a rows while I was doing all kinds of other things were for a good reason. The thalamus is not yet where it should be, but it is moving, so it is expected that this will improve even more with training. In general, my brain gives much more the image of a brain that is in balance, while before we started there was underactivity or overactivity everywhere.
What do I notice?
There are some very clear differences between the Maria before she started with Cognitive FX and the Maria after. The full effects of the treatment are not clear yet, but the first improvements are certainly already there. I have more energy. Where before I often spent at least an hour in bed around noon because I was exhausted (and if I didn't do it I wasn't worth anything for the rest of the day), now I did not need to rest a single time since the EPIC week. This while I have done much more on most days than I do on 'normal' days in the Netherlands. As described earlier, my eyes are 'on' again.
I feel clearer, as if the fog in my head has cleared up. I notice that I have to do much less effort to keep track of things and to remember or recall information. I can concentrate better. My sensitivity to stimuli is certainly not gone yet, but a lot less.
After the booster days we went to Salt Lake City. We left at 11:00 and were back home around 18:00. We walked through the city, looked at some of the Mormon things, drank coffee, had lunch, went shopping and did some groceries on the way back. I could not have done that a month ago without being in a sort of survival mode during the day, going to bed later with a lot of pain and then having a few more days (or weeks) of suffering the consequences of a busy day. Now I walked around without the feeling like it was hard work and I could enjoy it. Around 4:15 pm while shopping I felt that my head was done for the day with busy areas. When we were out of the mall we went into a kind of library where you can look up your family history. That went fine. I didn't like the mega-sized Walmart with bright lighting. I just put them on with sunglasses and luckily we only needed a few things. Back home I was tired during the evening and the next day. I had to keep it a little bit easy for my brain but I felt good. A bizarre conclusion when you consider that in the Netherlands I have been told all those years that such a day would simply not be possible without major consequences.
It is not like I can suddenly do everything now. It is not a miracle cure. In addition, I lived as a sort of elderly person for seven years. Well, I have nothing against the elderly, but at the age of 33 such a life is still a bit early ;-) There is still a point where it has just been enough for the day. Then the headache comes back, the dizziness is there again and my vision is out of focus (with which the overview disappears somewhat). I am also regularly demolished. The big difference is if I am very tired now, I am simply that: tired. I can still (quite) well come up with words, I can still follow a conversation. I also recover much faster and I can start doing things again much sooner. It will be a matter of building up and trying.
Now we are going to celebrate and enjoy a holiday first. The next two weeks we will go on a road trip: Provo - Bryce Canyon - Zion National Park - Horseshoe Bend / Antalope Canyon - Grand Canyon - Las Vegas - Santa Barbara - Big Sur - San Francisco. So there is a lot of beautiful things coming our way.
Back in the Netherlands I will have to keep training a lot, all together about 2 hours a day. When all of that is more in my system and I get the hang of it, I will write a blog about it again.
At home I will also find out what the improvements really are. Everyday things that go easier or things that I still encounter. I have no idea and we are going to see, but for now I feel incredibly hopeful that it will be a life with possibilities again, a life that hopefully will be a little easier and in which there is more room for spontaneity. And if there are symptoms that do not improve with training, I can handle that, because let's be honest: until a month ago I kept in mind that my life would always be with a lot of limitations and complaints, so everything that improves is pure profit and something I will be so grateful for. I am really looking forward to this search!
Disclaimer: For anyone with a brain injury who, when reading the Cognitive FX blogs thinks: "I will try this at home myself" I can only say don't do it. The chance of overloading is high and then you do more harm than good. The treatment with CFX is fully balanced in terms of effort / relaxation and completely adjusted to everyone's individual injuries and abilities. In addition, there is continuous guidance from specialized therapists who keep a close eye on you and adjust the program while you are doing it. In time, a similar program will hopefully be introduced in the Netherlands, but for now, Cognitive FX is the only one offering treatment in this way.