The smile has mostly gone. Well, while walking. Would like to be a bigger person/character, and continually work on it (but with no success, as my mates would say), yet my brain seems able to focus on only one task at a time….bend the knee, push with your toes, lift, up and over, heel down fractionally first, push through, keep a wide stance, bend the knee….
Being a little unfair on myself, upon reflection. TWO things at once (Hurray!). While instructing my pins, I’m also scanning the next metre or two of ground ahead, as 5 millimetres difference in (say) cobblestones could easily/sometimes does cause a fall.
Even just standing, it feels like I’m one of those giant air-inflated stickmen you see occasionally outside tyre-repair businesses, buckling this way, then suddenly flexing the other, in perpetual motion….
I should be more grateful, it’s a good challenge. And at the same time, hugely frustrating. Which is another good challenge. I’m sure though that putting your mind in sloooow motion mode to do any action – sometimes at night, even just to breath calmly - can’t be healthy.
Apparently cognitive (and behavioural) impairment occurs in around half of ALS MNDers, and 10% have frontotemporal dementia (FTD). Here’s my defence…!
Because you are forced to concentrate so utterly/much to complete every what-was-minor-or-non-conscious-pre-MND-task like walking, brushing your teeth (hang on to that brush!), doing up a button, swallowing, etc, etc, is it any surprise when someone from the past suddenly appears in front of you, on (say) the sidewalk, and you can’t instantly remember their name?
Then add in fatigue. I believe around (also) half of MNDers suffer from it. An ugly beast, in part because most people haven’t ever had fatigue, therefore their empathy for it is poor. Plus, it’s invisible.
Personally, fatigue is like being enveloped in a heavy glue or thick-as fog. Doing the smallest thing is a chore. A big mental effort. Similar to doing the Coast to Coast, from say about the 7 hour mark onwards, you are totally in the zone of concentrating on one step, then the next. Except this event, MND, is 24/7/365/??.
So, is it possible temporary memory loss is more so just a hesitation, a result of first needing to dig oneself out of the deep funk caused by utter concentration-blended-with-fatigue?
And that if you somehow could put aside the vicious circle of utter concentration-feeling knackered, requiring even MORE utter concentration-feeling even MORE knackered, etc, then the numbers of MNDers judged to have cognitive impairment and/or FTD would drop to ‘normal’ levels?
Or does it more simply show we can wear out our brain?
PS; Outside of while walking, the smile is still hauled out often. I need it, the world needs it.
Being a little unfair on myself, upon reflection. TWO things at once (Hurray!). While instructing my pins, I’m also scanning the next metre or two of ground ahead, as 5 millimetres difference in (say) cobblestones could easily/sometimes does cause a fall.
Even just standing, it feels like I’m one of those giant air-inflated stickmen you see occasionally outside tyre-repair businesses, buckling this way, then suddenly flexing the other, in perpetual motion….
I should be more grateful, it’s a good challenge. And at the same time, hugely frustrating. Which is another good challenge. I’m sure though that putting your mind in sloooow motion mode to do any action – sometimes at night, even just to breath calmly - can’t be healthy.
Apparently cognitive (and behavioural) impairment occurs in around half of ALS MNDers, and 10% have frontotemporal dementia (FTD). Here’s my defence…!
Because you are forced to concentrate so utterly/much to complete every what-was-minor-or-non-conscious-pre-MND-task like walking, brushing your teeth (hang on to that brush!), doing up a button, swallowing, etc, etc, is it any surprise when someone from the past suddenly appears in front of you, on (say) the sidewalk, and you can’t instantly remember their name?
Then add in fatigue. I believe around (also) half of MNDers suffer from it. An ugly beast, in part because most people haven’t ever had fatigue, therefore their empathy for it is poor. Plus, it’s invisible.
Personally, fatigue is like being enveloped in a heavy glue or thick-as fog. Doing the smallest thing is a chore. A big mental effort. Similar to doing the Coast to Coast, from say about the 7 hour mark onwards, you are totally in the zone of concentrating on one step, then the next. Except this event, MND, is 24/7/365/??.
So, is it possible temporary memory loss is more so just a hesitation, a result of first needing to dig oneself out of the deep funk caused by utter concentration-blended-with-fatigue?
And that if you somehow could put aside the vicious circle of utter concentration-feeling knackered, requiring even MORE utter concentration-feeling even MORE knackered, etc, then the numbers of MNDers judged to have cognitive impairment and/or FTD would drop to ‘normal’ levels?
Or does it more simply show we can wear out our brain?
PS; Outside of while walking, the smile is still hauled out often. I need it, the world needs it.
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