Brains

Brains: can't live with 'em; can't live without 'em.

I participated in tests for doctoral students where I was asked some questions and had to draw lines, like emulating an oscilloscope. Whilst doing it I felt a bit silly, as though this was a somewhat facile exercise. I stopped at one stage, having completed several pieces of paper with the pencil (all thoughtfully but unnecessarily provided in a pack) and being me I apologised, asking if I was doing it right? 

"Oh no, this is brilliant!" 

Blimey I thought. Some people are easily pleased. It's an hour of my time, and they seem nice, bless them.

So they got their results which I posted back to them in the equally thoughtfully provided SAE. 

For whose benefit was this? They are lovely people  - all kind, committed and caring academics. But after discussion with other FTD sufferers, it's quite apparent to us that efforts to get to grips with our condition can sometimes be wide of the mark. In these instances they can take a rather large blunt instrument to crack a nut when, with a bit more reconnaissance they could hit the mark far more efficiently.  

Another analogy would be that we're on one track, and they speed past on a train on a parallel track. We have the intention of going to the same destination but we never consulted each other and so we end up missing the other, and that feels frustrating.

What I'm trying to say is they could just talk to us. But rather than ask leading questions, ask us what works and what doesn't. Let's have an open conversation rather than a linear one.

While we're still sentient and retain the majority of our faculties, we can provide answers that we're all looking for. We hold the keys.

I still read The Times every morning, I talk to my friends and family about politics, culture and all the other things you do. I take in the information and process it. I'm not as quick as I once was, but hey, I'm still here, running at xx% of capacity.

When someone knows you have dementia you are suddenly marked. A well-meaning professional can end up asking your partner how you are - in that "Does he take sugar?" way. It's quite odd the first time it happens. It's an unconscious step people make in their approach and connection with you when they know you've got it. After all, you're no longer quite in control anymore old boy, so it can be a bit "Me Doctor, you patient."

Some people's whole demeanour changes when they discover your illness, and what they choose to talk about is made rather less taxing than it would have previously been. When the topic would previously have been the Dürer exhibition at the National Gallery or the latest cabinet reshuffle, it now doesn't get past the weather.

Some people with dementia are quite incredible: super smart people who've led very successful lives and have found that practices born from academic theories on how best to deal with the symptoms of a specific dementia don't work for them. 

My friend 'A' found nothing recommended worked for her and took an empirical approach to her dementia, with a combination of multiple techniques including dance, mental exercises, meditation, breathing techniques and mnemonics. This resulted in her seemingly cure her condition to the extent she now feels fraudulent being in dementia support groups! Indeed, an MRI scan confirmed a hole in her hippocampus has actually disappeared. 

This is not supposed to happen.

She has offered her findings to the neurological establishment but they have so far yet to respond. 

I would suspect it's because she has not come from a scientific background.

Disclaimer: I'm completely pro-science - I have no time for anti-vaxxers and all that nonsense. Science is the reason I'm alive today, and probably the reason you are too. However, there is little to benefit sufferers of FTD at present. Rather than coming from something starting with a theory then following the conventions of scientific practice, why not just see what works then reverse-engineer to see how and why it's working? I don't see any harm in this. I just wish people in the establishment were more open. 

It's great to have the online communities and share our experiences and what works for us. Whilst the the researchers nobly do their thing (and in doing so benefit the world) we will continue with ours, sharing our experiences, recommending practices that benefit us and perpetuating the conversation.

And hopefully all sides will converge one day in the sunny uplands for a glass or 2. Chin chin.