Hello Caz
I totally understand all the comments re cognitive changes.
I was fortunate that my cognitive problems didn’t begin properly until after I stopped work (which was due to more physical challenges than mental). Fortunate in that I worked as a training and public sector consultant. I was able to speak and write well throughout my working life. I cannot imagine how you could teach or train with trouble finding the right words!
I did have a foretaste of what cognitive trouble I might face in the future when I started taking Avonex in 2002 (my first DMD). The day after I injected each week, I had severe cognitive problems. Talk about being unable to find words, I just simply couldn’t think. I forgot appointments (even with them listed in my diary). I couldn’t find words when speaking. I spent one whole day writing a training course and on rereading it the next day, I discovered I’d written absolute garbage. There was no leeway in the courses I wrote, it was writing training on specific legislation - there was only one correct way and what I’d written bore no relation to the regulations! I couldn’t even remember which control on my cooker was the grill and which the oven.
It was 4 months later that I decided not to take the Avonex in order to be able to explain to the neurologist what was happening. He (lovely Prof Giovannoni), told me that in very rare cases beta interferon can exacerbate existing symptoms. I had no idea then that I had any cognitive damage. Luckily I could stop the drug and so regained my senses.
That experience gave me an insight into possible cognitive damage. I’m lucky in that I’ve never experienced anything quite so bad again. But I do have problems finding words, sometimes it’s specific words that I always have trouble remembering. Other times it’s continuing a train of thought, so I get stuck midway through a sentence. Or fail to be able to add up simple sums. I have trouble following TV series (so I just don’t bother anymore). I can’t remember the plot of books I’ve read (and enjoyed). When I’m really tired, I just can’t think at all.
I don’t know why song lyrics tend to stay in my head, even flipping irritating ear worms. And I retain my memory of history (I’m glad about that!)
I have had cognitive tests several times in the past. Their value to me I doubt though. The trouble is that the tests are ludicrously easy. They seem designed to test your very short term memory and aren’t much good at variable cognitive problems either. Plus, once you’ve done a test, you know what’s coming up so you remember things without trying.
So for instance, one of the tests is to count backwards from 100 in 7s. I can do this quite easily. And having done it about 3 or 4 times, it’s very easy for me. Another is the tester tells you some facts and you’re asked if you can remember the details at the end of the test. It would test your short term memory, but not anything longer than about half an hour. It also isn’t very useful when your fatigue levels affect your cognitive abilities.
So when Ellie (Chocorange) asked you what you hope to gain from such testing, your answer may not be as well clarified as you’d expected. Basing career choices on testing that’s not foolproof doesn’t altogether make sense to me. The last test I did seemed to tell the neurologists that I had no cognitive damage, mostly because that day my brain was working and partly because I’d done the test several times before. (I’ve put it to my neurologist that these tests could perhaps use different numbers - apparently 7s are the most difficult to count backwards, so I suggested they don’t start from 100 every time! Good idea they said. I don’t think anything will change,) The very first such test I took did highlight mild cognitive damage, that was several years ago, I know I’ve deteriorated since then so being told the latest test showed I had no cognitive deficits made no sense (to me).
Norasmum have you an excellent answer, it really is so much easier to write rather than speak. Plus you have time to dig around in your brain to find missing words.
Best of luck
Sue
(Sorry, I’ve gone on a bit!)