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Saturday, October 16, 2010

Work Arounds - Part 2

Work-around: a plan or method to circumvent a problem without eliminating it.

(Everything here is my account of what happened to me, or my interpretation of stuff. Keep in mind as you read this that the person who wrote this has Frontotemporal Dementia. I do not recommend any of these solutions for others. Every case of FTD is different. What I am saying is that right now - today - they work for me.)

This is a continuation of the Work Arounds - Part 1 post. What I am writing about here are work-arounds I use for special situations. Things that don't happen all the time, or require something more specialized. In thinking about work-arounds I keep coming up with new ones - both big and small. Sometimes it seems like my whole life has turned into one big work-around. But hey! Some days are better than others.

Some of these may be more changes in the way I approach and do things than actual work-arounds, but for me they serve the same purpose.

A work-around for both sequencing, and for initiating actions comes from a strange place. This is actually the one which gave me the idea for this post on work-arounds to begin with - Others. My friend commented last evening out of the blue that this is evident in my behavior. I do better when I do not spend the whole day alone.

I would likely not go anywhere, or do anything, if it was not for the assistance (and sometimes insistence!) of friends. Just having someone else help with the planning, initiating, and going with me allows me to go. Having someone who understands some of my limitations, and can just take my hand in a confusing crowd. This is a work-around because in the past I was very independent. I did not need the assistance of anyone for anything. This is a big change.

Also having another person with me who is not afflicted with bvFTD serves as an anchor for me. I notice I stay focused better when I am doing something with someone else. It is subtle, and very simple. For example when making a meal, it is easier to get all of the steps in order when someone else is helping. I am a really great cook - or so I think - but it is easier if someone else is helping.

I am not describing this one very well. It is not any actual help that is the work-around. It is the presence of another person doing normal things. I sort of identify, or react to their actions, and it helps keep me on track. Another example is when you are walking with someone, you frequently look at one another, and eventually fall into step. Some kind of feedback is going on.

OK - maybe having company around isn't a work-around at all - but it feels like one to me because it acts like an anchor to normalcy.

Here is something a little more mundane. I do things slowly, and take time to prepare. By "prepare" I mean I may take several days to think about something before even starting on it.

A friend gave me a computer recently. He gave it to me because it was totally useless. Nice guy! He said the hard-drive was ruined, and needed to be replaced. It would not boot up at all. I have an extra drive, so figured I would give it a try. I was a little worried I might no longer be able to figure it out. Thinking is hard. When I examined it, I found that it appeared that it might just be the operating system that was the problem. Windows Media - go figure!

I thought about it for several days, and went over it in my head many times. Finally I took an old Windows XP disk, and reinstalled the system. It worked! Of course with Windows you have 30 days to register it, and this copy was already registered on this old computer. No way was I gonna shell out a couple hundred bucks to Microsoft for another copy of an operating system that has never worked well. But some progress with the broken computer had been made.

So, I thought about it some more. It took about a week to come up with a plan to try a free operating system. Linux! It took another several days of research online to learn a few things about the various versions. Reading several different web sites seemed to help retention. It took a full day for me just to write a CD. The CD writer in this computer is so old it cannot write a CD image of such a large file. It took me another day to figure out and plan a work-around for that problem. I just went very slowly. I would do one step, and wait and think before going on to the next.

The bottom line is that I took my time, and worked at my own pace. I did it slowly. I stopped, and took a few days to plan and figure things out. I made a few lists, and wrote out some of the steps in the proper order. I got detailed instructions online. It took a couple weeks to do what would have taken me a few hours in the past - but I got it done. I am rather proud to have managed to install Linux, and have a really fast working computer to show for it.

This doing things more slowly, and taking time to think about it, also applies to making decisions. I am no longer any good at making decisions quickly. Sometimes I write about them, and explore the pros and cons, and various outcomes. Just thinking about something for a few days lets me decide with less stress. When I need to decide something quickly, I can feel the stress.

Work arounds for emotions are a little more difficult than for memory, thinking, and attention. Since I have become aware of my anger and rage as a symptom, I am always on the watch for it. A few times over the past few months I have felt my rage growing, and have been able to diffuse it. So far I have been able to keep it under control. I can feel it growing like a fire inside of me. It is like a feedback loop - growing bigger feeding on itself. I recognized the feeling, and was able to clamp it down. I fear it getting away from me. It burns hot, and feels good. I want to let it burn, but I know I must not. There is a scene in the movie Fire Starter where she stops her rage by transferring her attention to boiling a pot of water. I do something like that inside my head. I actually pictured that particular scene when my anger was growing. In one case recently I physically removed myself from the situation. I also try to avoid situations and people which will ignite these dangerous emotions.

When I have a period of increased stress, I crave some alone time afterward. I remove all the stress by hiding for a while. I do not answer the phone, and do not answer the door. Sometimes I do not even read any emails. It is relaxing, and refreshes me. I am careful not to let it go on for more than a couple of days, but sometimes I just need a little break from everything and everyone.

I saved this one for last: Driving. I read recently that people diagnosed with dementia drive for about 2 years after the diagnosis. I also read that with FTD - Frontotemporal Dementia - one of the biggest difficulties driving is with attention. It is hard to do more than one thing at a time. Driving requires being aware of many things all at once.

So far I seem to be doing very well driving. As a work around I do drive less, and try to avoid heavy traffic. Since I have gotten confused a couple times, and not known exactly how to get where I was going, or where I was, I use GPS almost all the time.

Most of the time I do not need the GPS, but just a few weeks ago I was returning home from my doctor's appointment, and there was a detour. Even though it was an area familiar to me I was totally disoriented. All of a sudden I had no idea where I was, or where the road I was on went. I had no idea how to get home. I just followed the directions from my GPS, made the appropriate turns, and a few minutes later I knew where I was, and how to get home.

Having the GPS already engaged allowed me to navigate through the confusion without the stress of getting lost. I didn't have to pull over, and start the GPS. It was easy, and comforting to have this back-up system in place.

Though I think I am still capable of driving, I do not just rely on my own evaluation. I seek feed back, and the opinions of friends and family. I must assume their judgment is better than mine on this. So far everyone says I am doing very well. I know eventually I will have to give up driving, and a huge part of my freedom with it.

I mentioned in a previous post that it feels like my whole life is just one big work-around. Maybe it is. From my perspective it feels natural most of the time. I just do what I need to do to get through each day.

Some days are better than others.

Comments are welcome.


  1. Maybe I'm not as observant as I could be, but so far, in our few visits, I have only noticed one large change. You wanted to do a simple arithmetic problem and you couldn't. You thought about it and came up with an answer but it was incorrect. I've never seen that before with you. I haven't ridden with you, so don't know about the driving. I hope you will be able to continue driving for a long time as not doing so would severely limit your mobility. But you have all of us to help you out there and I hope you don't lose the ability to know that and ask for help. I'm a stubborn old fart myself (surprised? I think not.) and I know how hard it is for you to ask for help, but please. That's why you call us friends.

  2. Thanks for the comment Matilda.

    Asking for help is difficult for everyone. Last week was very difficult, but I got better. I just had to wait it out. There wasn't anything for anyone else to do that would have helped.

    Sometimes by chance I get the correct answer, but I can't tell when that is ; )

  3. Lee, I find your encounter very interesting and insightful. I suffer from FTD also, and I find most of your rountine in my daily life also. Thanks for putting it to paper (so to speak). Kevin

  4. Thanks for the comment, Kevin.

    I guess we are all living in the "dash". Lets just hope it is a looooong dash.

    Some days are better than others.