Mont Ventoux was such a high, literally and emotionally. It is impossible not to experience some sort of come down after that. Yes, yes, it was with e-road bike but still there was a lot me in that climb, my effort, my doubts, my persistence. There is another part of me, though that was waiting in shadows after that high point. That part needs attention and I am hoping to find new ways to deal with it. Deal with some of those annoying, invisible issues that come with MS.
Appointments
A new set of appointments started up fairly quickly after my return from France. First of all a new company doctor, a nice guy who also understood MS. On the heels of this, something different. A neuropsychologist, referred by my rehabilitation doctor at the local… rehabilitation clinic.
I don’t know why but I really don’t like saying ‘rehabilitation doctor’… I’m in rehab?
Now, anything with ‘psychologist’ in the title sounds like there is something to confront, some impact of MS that is to be discovered. In a sense, this is also true for a neuropsychologist. The means, though, are actually a set of seemingly mundane tests to check cognitive skills. Memory, concentration. These are to establish the actual problems from my leaky brain.
Mundane but important. All these tests, patiently delivered over three hour’s worth of sessions to a subject who was, sometimes, not quite believing what he was being asked. Yes, there was a piano one of those cards you showed me. Why should I care how long Willem was in the water waiting to be rescued, you told me that ten minutes ago! Despite my responses, such testing is important as it will start to quantify what I know. I am slow, my memory is bad, my concentration is hopeless. Controlled testing will, hopefully, provide a baseline for measurement of subsequent progression and suggest treatment that can help.
What Baselining Means
It is important to be realistic, even if that means sounding pessimistic. The treatments that come from this will not be cures and there will be no magic bullet. That’s where that pessimistic, toxic feeling can come in, no matter how often I say it. The old ‘incurable’ element. So why do all of this? What is there to gain?
Simply, what I am experiencing every day will hopefully get some sort of label. Something that I can take some sort of countermeasures against, concrete steps. Some measures I already take myself. Notepads on my phone to remind me of key things like the names of my friend’s children’s names, what I want to chat about as well as a separate, locked notepad with key stuff like… my postcode. I do forget that. I do not pretend to understand the outcomes of this testing but there may be more countermeasures I can take. Some other little workarounds that are blindingly obvious but which I have not thought of yet.
What I Am Hoping For
So no cure but perhaps some more tips, more suggestions that will help me work and play more optimally. Take work. On the spot decision making is no longer a strong point, that is clear. What I am not expecting is some sort of list of functions that I should do. That is not feasible. Perhaps how best to employ the skills I have? And what skills they are in the sense of what is not compromised by cognitive issues?
In the end, I am looking for ways to live with the cognitive issues I have. Not overcome them but function around them. Alongside that, it would be good to understand the issues so I can hopefully explain them more clearly when they occur. I feel I know what is going on in my head. Or, what is not going on. One of the roles of the blog, for me, is actually putting this in to words because, when I am in the middle of cognitive cr*p, it is hard to explain verbally! So I say less and watch as conversations go on around me. Some kind of spectator sport only not always following the exact flow of play.
Self-Perception
Of course, because I say little, no-one notices. So what is the problem? We didn’t notice anything! You do you realise you are getting older, don’t you?
(I am fifty-one so f*ck off).
The difficulty in explaining these issues whilst experiencing them is perhaps the worst aspect of cognitive challenges. Having issues that I cannot explain because the words are just not there. This is not uniform and quite often I can be coherent. But it is inconsistent. Writing (and app’ing) is easier simply because there is more time to think about what I want to say and I can correct before it comes out of my mouth. I would love to be able to consistently explain it but that will not happen.
Come Down
So it is very much back down to Earth. A come down after the personal empowerment that followed Mont Ventoux. Perhaps, though, that climb will act as a signpost again? A signpost to great clarity over the cognitive issues that I know that I have? Perhaps more ways to counter these issues, to explain them coherently and quantify them. To not be alone in my mind (and in this blog).
And that is the thing. Of course I am not alone. There are always people around me. Any feeling of isolation is in my mind as I cannot explain what is actually in my mind. Hopefully the tests and results from these neuropsychology sessions will mark a new direction of toward clarity. What goes up must come down. But what comes down, can also go up, right? Right now, I am not sure what will come.