On the avoidance of being too tired to move, and the iBot

by Michael S. Kaplan, published on 2009/10/24 10:01 -04:00, original URI: http://blogs.msdn.com/b/michkap/archive/2009/10/24/9912471.aspx

I've had more and more people asking me lately about my symptoms -- just what are they, people wonder.

My guts tell me that this is not something to write about, but after 39 years on this planet I've decided that if I have learned anything, it is that my guts really have shit for brains. If you know what I mean.

So her we go, covering the current major symptoms.

There are basically four of them that fall into the "affects my life" category. Which is the category I am going to stick to for now.

First, I've lost proprioception (joint position sense) in my legs. This means that I can put them somewhere but I can't tell where they are by any other means. So I have to trust that they will be where I put them and of course the corollary to that is that you have to remember where you put them. Sometimes I also get the symptom in my arms too, though this is not as worrisome. Summary: I have to trust where I put my legs and feet.

Second, I've got a foot drop on the left side, which means that I place my foot somewhere and it can decide to let gravity assist and pull it down a bit farther than I thought. The workaround is easy enough -- just make sure you lift the foot higher. But it makes the walk look dorky. Summary: I cannot trust where I put my left foot.

You can no doubt see the conflict in these two items already. :-)

Third, I have disequilibrium. This is not like vertigo as I feel nothing spinning -- I just tend to see the ground coming toward me or falling away from me, without warning. I always have it somewhat and sometimes it can be extreme. I have had this symptom for years and in fact it is the one I originally got a cane for (I'd rather that people who saw me fall in the daytime assume I am a gimp, not a drunk!), the one that can at times be the most difficult and debilitating. Summary: I can't always tell where I am in relation to the ground.

Fourth, I get fatigue. Now even at its worst this is not a mental fatigue, it is just as if the body decides it has had too much then it shuts things down. This is a symptom I first had over a decade ago in Amsterdam and have a great memory of Richard Campbell and Stephen Forte carrying me when I couldn't walk any more. I've usually tried to avoid the situation since then and the only time it seems to happen these days is after office moves at Microsoft (even with assistance some maximum gets reached and I am basically on my butt for a few days). Summary: There are times I can't do anything.

Now the iBot has taken many of these items and made them much harder to measure or sometimes even notice. And as I was discussing with my neurologist just the other day, this frustrates the engineer in me that wants to measure things to see how they are doing. The iBot has in many ways ruined a significant piece of my neurological care, since I only see her once every six months and she gets only brief snapshots into how I am doing.

Though when I compare battery life in normal situations vs. extreme ones (in this case a Moby concert where I chose to rock out the drain is a little more. So more precise measurement of the battery charge would allow me to get back the kind of more precise understanding of how hard the iBot has to work to keep me balanced in some of these  situations. Though at the moment they do not seem too disposed to releasing that information or how to easily get it, unfortunately.

The Moby concert was an interesting case, as I was rocking out quite a bit in place (as Cathy and Kevin who I ran into and ended up hanging out with can attest) since it did almost edge into fatigue at the end of the performance - it just shows how much movement can impact fatigue, with the movement being outside the control of the iBot.

In any case, in the end I am happier to be doing well than to obsessively think about disease course (even this blog you are reading which makes me think about the symptoms I no longer deal with as a huge issue on a daily basis) is unusual since I no longer have to think about it, really. I like a machine that takes all four of my debilitating symptoms and makes them either irrelevant and in as very real sense does it by using technology to replace the functionality my body used to use.

Getting back to the office move issue -- I am giving up my four computers, I am slowly moving books home, doing all I can to minimize the issue of the office move by making it a small office move. And I'll miss the extra machines just like people who used to borrow books will miss the library (as I will), but a man has got to do what a man has got to do. Although pushing the fatigue limits has no impact on long term curse of the disease, those days off are hardly pleasant and I am incredibly unhappy about them, just as I am always unhappy about gratuitous moves....

# John Cowan on 24 Oct 2009 2:07 PM:

Neurologists are used to diagnosing patients almost entirely by their self-reports.  There is no "objective" test for epilepsy, for example, unless the neurologist is lucky enough to see the patient go into a seizure right there in the office.  So you have no choice but to listen to what the patient says, as well as family and friends.

(That said, a woman *did* go into a psychomotor seizure in the waiting room where my wife was waiting to see her neurologist, and promptly grabbed my wife's purse and pulled it away with the strength of a gorilla.  Fortunately it was leather and held up under the strain.)

# Michael S. Kaplan on 24 Oct 2009 2:56 PM:

Well my neurologist has other things like multiple MRI scans (1 of which is here on the site!), EP tests, and other stuff. But progression info is pretty much out the window thanks to my iBot!

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2010/06/19 They got the $2000 from me, which is probably all they were looking for....

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