Successes

I’ve been biking about two years, and I feel as though I’ve seen some
modest improvements to my condition. This should be taken with some
salt. I haven’t taken any set of multiple medical progress tests
yet, and I don’t believe I’m up to a normal standard yet.

I’ve come to think of the impact of my HD in terms of skills – at what
level I can and can’t do various things. For example, my programming
and computer software research skills used to be excellent, enough for
me to make a good living doing some pretty fun and helpful stuff. But it’s
since become clear that even my basic programming skills are no
longer good enough to command a salary. I can still program, just
slowly and with substandard tricks and innovation and enterprise.

Some skills have clearly improved since I started biking.

Tire Pumping: When I started, I couldn’t pump up a bike
tire that used a car-tire-style pump point. Fortunately for me, the
market’s been upgrading to a newfangled style of pump, easier for me.
BUT – out of stubbornness, recently, I tried to pump up one of my old
tires. I succeeded, for the first time in years. That skill still persists.

Civ: I play a complicated computer strategy game,
Civilization IV, at a higher level than when I started biking.
Before the disease got far, I could beat a series of its predecessors on their
highest levels. That’d stopped by the time I started biking, though;
then, the intermediate level was reliably beating me. I had both
forgotten and lacked the play skills to carry out a basic strategy
that had helped propel me to my early wins. That strategy is no
harder to carry out in the current versions than in its predecessors.
I just completed a victory on intermediate level. I’m working on two
new games now: a higher-level game and a kind of game that lots of
other people are posting their scores on for evaluation purposes.

Shirts: The frequency with which I put on shirts backward
has plunged from every day before I started, to weekly. Though this
week, after writing that part of the post, it’s gone back to being bad
after two months of being good (two steps forward, one step back is
the rule here).

Blogging: Though this is fuzzier to judge than the other
things, I’m pretty sure my blogging skills have gotten better. The
month before I started riding, I was starting to be concerned about my
blogging (I post to another blog) – I was posting less often, and
about less interesting topics. My posting has gone back up from once
to 2-3 times a week. Another good sign is that I’ve been planning this
blog for a year, and only now have finally done it. Something thing to
watch is how my posting intervals change on this blog. And I feel as
though my posts are better composed. They’re back on interesting topics
(I hope), and likelier, I think, to be interesting to a broader audience.

Money: It seems easier for me to think about money.
Certainly, I’m generally less annoyed when we talk about it. But I’m
still feeling no big call to go play with how we’re managing it.

Now it’s here, now it’s not: Some skills have returned and
gone away entirely. The one that comes to mind is giving coins as
change. I used to be stubborn about keeping lots of change in my
pocket and using it. Not any more, though the urge sporadically returns.

Problems: Welcome To The Cutting Edge

To set expectations appropriately, I want to explain problems and
possible or likely limitations of biking. After all, this amounts to
an experimental treatment, and you can count on that sort of thing
having plenty of problems and drawbacks.

The worse problem might be the vast numbers of falls at the start.

Statistics show that bikers have lots of falls when they start, and
that they tail off rapidly (exponentially, for the engineers). Well,
I’d done lots of biking in college, a decade and a half ago. Though I
could still balance a bike, time and HD combined to deny me the memories
of how to ride well. I had to start that curve from very near the
newbie part, meaning many crashes. Plus, the movement problems
inherent in HD made it even worse.

Fortunately, one fear did not come to pass – when I was still driving
cars, I crashed routinely into other cars because I wasn’t paying
attention, but that doesn’t seem to be a problem. The only time a car
has hit me was when I was going the opposite direction from traffic up
a sidewalk, where turning drivers often don’t look. I stopped doing
that, and it’s been over a year now. I believe that it’s because of
the flow of new neurons, because I’m much more vulnerable to falling
in the first five minutes of a ride.

The entire progression is in a two-steps-forward, one-step-backward
progression. I do feel like more of my skills have gotten better than
worse, but I’m always seeing some skills getting worse again. There
is an appearance to me that physical skills are likelier to fall back,
but I might just be looking harder at them.

The population of people who have reversed their neural losses via
exercise is entirely unstudied in any research literature. We are on
the cutting edge of research. Generally speaking, long-term practical
problems limitations are as yet unknown. Although my memory so far
seems to be getting better, I do still fear that, even if I make it
back to a more normal brain cell count, I will continue to see
noteworthy memory and skill degrations of the kind I see in my
inevitable step back from the two steps forward. After all, even if
I’m gaining more neurons than losing, there will always be serious
turnover in neurons until a true cure becomes available.

On the third hand, I might learn to better learn how to handle the
losses, especially with plenty of neurons. I’ve started using more
mnemonic devices in the past year, for example. That’s just
speculation, though – despite my efforts, so far I can’t remember many
friends’ personal situations and problems when talking to them.

What’s Working For Me?

Long, daily exercise, in the form of biking, is the biggest help for me.
My experience is that exercise must be significantly
aerobic to help. Long periods of weightlifting, walking,
or even dancing(!) do alot less. If I’m not breathing hard, it’s not
helping.

The biking isn’t easy – I get more than my share of bruises, since
of course, well, HD has its effects on physical skills. I’ve had to
make a conscious choice to put up with them in exchange for real hope
of cutting down on the disease’s worst bad effects.

I’m currently taking and have tried many other things, in the hopes
of getting other mechanisms on my side, but really, the biking seems
to me to have made by far the biggest difference. If I’d never taken
the other things, I suspect I’d only be modestly worse. If I hadn’t
biked, I’d be getting too stupid to blog effectively by now. I’d
spend alot more time depressed, and be falling more.

The neurogenerative effect of exercise is probably what makes
the biking work for me – exercise has been shown to result in neuron
creation. But it also helps with depression, both directly via a
regular stream of endomorphins, and indirectly because I feel my
situation is getting better rather than worse.

Why the bike in particular? Well, it’s aerobic exercise. It
serves as transport, which is helpful, since like many others with
neurodegenerative diseases, I can’t safely drive; I can safely
bike, though. Finally, the bike gives more physical support than
running; I believe I’d have even more bruises if I ran instead.

Biking appears to me to be safer than driving for me because it
generates new neurons as I go, making up for lost ones, and letting me
adapt quickly to biking and to lost neurons. Most of my falls have
been just starting out. Interestingly, one skill I feel I’ve acquired
has been learning to use those new neurons as quickly as possible to
make my ride safe. I really had many more falls before that.

I’m wondering if I might eventually be able to drive safely again if I
make a practice of never driving unless I’ve biked enough that day to
remediate the previous day’s brain cell loss. But I’m not inclined
to even try until I get rather closer to my starting neuronal levels.