My Strategy for Writing with Brain Damage


Aphasia, or "expressive aphasia" in my case sucks because it can cripple any chances at communication. My spoken or verbal aphasia at this point is so bad I can't make full sentences...but my writing is much much better, far closer to how I used to that any other form of communication.

Now being able to type and being able to write are two very different things and while I do have days where I just cannot master the process of describing what is in my head, thats maybe 5% of the days that I can't write. The rest are some form of "I can write in general but cannot retrieve enough facts from memory to write about subject X"...like there is a mental block on writing anything on the target subject.

This really screwed me up at first because I had so many things I had to write down, get documented before I no longer could. Things about how the house is wired, how to reboot the media servers or how to archive a set top box or how to maintain our personal cloud or...you get the idea. Plus I have things I am doing with other folks on the experimental side of dementia and LBD need writing too..but I go to write about (for example) how and why the house is wired the way it is...but that day, at that moment my ability to wrap my brain let alone tongue around technical subjects might be completely deflated and so getting that document done that day was a non-starter.  It doesn't matter what it is, I might be trying to write something about an event in my childhood or even adult life but for whatever reason, I just cannot access those memories, not clearly....

To combat this I developed a really simple method of working. It doesn't matter what your computer runs, what writing tool you use (although I can suggest one that will help), for me its more about combating what my mind is allow and disallowing me to do at any given moment. Thus in my "Documents" folder I keep a handful of other subfolders, each containing a topic I need to write about, sooner or later. So on days where for example I attempt to write about something from my childhood but the dementia prevents me from accessing that memory. I can sit and struggle at it for hours and never get out what I need to. However on that same day, if memory is an issue, creativity might not be so when this happens I might write something about philosophy instead, losing little of the productivity I have left.

I know this sounds too simple to work but if you have dementia and wish to write, I say try it. it will either do nothing for you or it will do miracles but in either case I am not up to involved explanations. The point is, if path A proves to be difficult, attempt path B and if that fails, try path C. So in my documents folder I have areas for LBD, cannabis growing and processing, philosophy, patient strategies for dealing with this, my personal story, my recipes (have done all cooking in the house for 25 years and now must pass the torch) and more. Sure you can't promise exactly when something will get done but you can promise that everything on this list will get done, sooner or later.

One more thing about writing and dementia. I mentioned earlier your choice of tool wasn't important and that is true as far as it goes. The way this method works isn't dependent on a particular tool or operating system. However  one general improvement to your computer if you wish to write and have dementia is you can install a tool called FocusWriter. FocusWriter is a word processor that does 90% of what the bigger office suites do and it does so while getting your entire computer desktop out of not just your way but out of your mind/focus, so words are the only thing you need to deal with. Here is a screen shot showing my standard desktop with only the word processor running and the same "document" running under FocusWriter..this should make the point better than a thousand words: A totally clean interface is key to writing with dementia....
My normal desktop running Open Office

FocusWriter on the same machine...

So I am saying if you wish to write and need a clean UI to do it in, give FocusWriter a shot. Its cross platform so runs everywhere (writing with it under Linux right now) and is free of charge. Highly customizable...I liked the clouds.

Hope this helps...




Peace,
Jeff Cobb

Comments