This is becoming one of the most difficult posts to write for a long time. Third draft! I have chucked out two! It should be a simple enough post, just covering results of Neuropsychology tests. Results, though, never seem to be simple with Multiple Sclerosis. It is not as simple as ‘X marks the spot’. In combination with wider results and opinions, these results signal it is time for a pause for thought.
The Results
As per the last post, this was a set of seemingly mundane tests. Around three hours worth. Tests of memory but also problem-solving and dealing with information and data. Some were timed. It is difficult to say more. I have tried in previous drafts, and it soon became pretty clear that it is difficult to make those mundane tests interesting to read about.
It is more important, and a little easier, to describe what these tests were assessing. The cognitive pyramid. The base of the pyramid is processing speed, upon which is built attention and working memory, then learning and memory and at the summit is executive functioning, effectively the brain’s management system that coordinates focus, memory, and self-control to plan and achieve goals.
The results were interesting. My memory and executive functioning are actually quite good. The problem is the functions at the top of the pyramid don’t operate alone. They depend on the bases of processing speed and attention, and those two are poor. It is as though an ancient Egyptian pyramid were sinking into the sand. The summit is still the summit, it’s just going under with everything else.
Consequences
Practically, this means a bottleneck in my mind, too much trying to get through without control. So, I will remember something, honestly I will! It will just take more time than it should, even when factoring in age. I will take part in a conversation but… sometimes it can feel like I am actually watching film but at the wrong speed. I can’t follow it because it is too quick or too slow. The compromised foundations mean more work to keep the summit viable. It’s not always efficient, and it isn’t always successful. It can be quite tiring as well.
None of this is very surprising and many people I know will recognise that ‘mental stumbling’. But it is something of a relief that what I feel is an issue has been validated by testing. It is not my imagination.
The Hard Part
Even though this confirms what I know, it can still be quite difficult to deal with. More information can help. I dived into podcasts and reading about cognitive issues with MS. The podcasts especially were not always cheerful listening. One was a psychologist with MS who started with something like ’The first thing I talk about with clients is the possibility of an early death’. Cheerful stuff. There were standouts, though. One podcast in particular was excellent although, unfortunately for English speakers, it is in Dutch. De MS Keukentafel. The MS Kitchen Table.
This podcast actually had some hard truths. Information about what is happening is not difficult to find but what made this podcast different was there was a lot more about the personal impact of the issue that the neuropsychological tests revealed. Small things like not being able to judge when a joke is the right one to tell in the situation or being lost for words whilst others race ahead, especially challenging in professional circumstances. It is strange just how hard it can be to realise this even if it is very much old news.
Identification
The feelings that were outlined are also familiar, something I can identify with. No matter what, when and whatever scientific justification there is, it is possible to just feel plain stupid. People do lose patience when I am doing an impression of a goldfish whilst groping for words. That ‘In the Way’ feeling I mentioned in a previous post. Easier to just keep quiet sometimes. It can also trigger depression and fatigue. The latter because it gets tiring getting the right thought across. The former? Well, it is quite chastening to just be unable to pull the right memory out at the right time or make the right witty remark. It can feel like your personality is becoming distant, further away. You are becoming someone else.
Perspective
There always needs to be balance. I will have a further discussion with the neuropsychologist to look at what can be done to help with this. Not treatment as such, more training. How to keep my mind fresh. There are also many suggestions out there, from the podcast and other sources. The need to be creative, which comes through writing, painting, drawing and cooking. The importance of exercise and variation within the exercise. The podcast suggested taking a different route on a walk, but that can be a little difficult. A different cycling route with the e-bike to the physio? Small difference. Keep reading that long, complicated book. Just break it up a bit. Some of this I already do, like taking a short break whilst at a concert or visiting a museum.
It is also important to realise that I can’t get this right all the time. Mistakes will be made. I will be socially clumsy. But I need to keep trying. All the sources I read and listened to emphasised the importance of social engagement. I need to avoid being silent even if I fear what may come out of my mouth. Isolation is something that is always in the back of my mind as this illness progresses and I do fear it. Why not just tell people that my mouth can go wrong? When they know the issues, people are usually patient. If they are not? I won’t miss them.
Results and Wider Context
These results come in the midst of various appointments. The wave has begun. Neurologists, MRIs, Company Doctors. One report was pretty stark. ‘The patient will not recover fully’. Not getting better. Even though I have always known this, it is still a little chastening to read. Progression has not been fast, but it is starting to become noticeable. Not only do other people notice I am slower, I am starting to notice myself. Getting these results in the wider context of reports and developments almost feels like a marker. Time to consider how I deal with all of this.
It is against this context that I will take a short break from the blog. This will be temporary. I enjoy writing the blog. Otherwise I would not do so. It also helps keep my cognitive skills sharp and is plain therapeutic to write. It’s also sometimes easier to write about this sort of thing as opposed to speaking about it. No need for quick thinking, the right words can come slowly through the drafting process.
There is a lot going on, though. I need to think about what I want from this blog. What I want to write about as it is getting a little chaotic. Perhaps a bit of a strange way to end a post that is reflecting on results, but it just feels the right time to stop for a couple of months, have a holiday in there and perhaps just play around with the format and tidy up what is there. Part of a general pause for thought as the progression of my MS continues.