Thursday, March 12, 2015

The Parkinson's War

I wrote a poem for Parkinson's Awareness month last April. While April is yet to come this year, a group I'm in is doing a "Never Give Up" theme for this month, so I wrote another poem to commemorate both events. So without further delay, I give you my Parkinson's poem for 2015.

The Parkinson's War


We march to battle
with shuffling feet.

“Heal, toe! Heal, toe!”
the cadence commands.

We load our weapons
with fumbling fingers.

Our ammo: medicine, a
healthy diet, and exercise.

To battle till death
with an undefeated foe.

Undefeated because
there is no cure . . . yet.

But the battle is not won
by simply killing the enemy,

Though we hope and pray
to see the day of its defeat.

The true battle is a fight
to live life to its fullest.

Despite the odds.
Despite the losses.

That, my fellow Parkies,
is a battle we can win—today.


~ R. L. Copple

Thursday, March 5, 2015

Dancing Time

Good news! In general, I do seem to be doing better the last couple of weeks. Not perfect by a long shot. There are times the stiffness is bad, along with some muscle pain in my left arm. But either due to continued use of TUCDA, exercise, or maybe even the increase in my Azilect dose (though that is supposed to not show up for four weeks at the earliest).

Times like right now, I can type pretty well. But likely today, it will get worse. That's what makes getting to writing things like this blog difficult at times. I want to, but my body doesn't feel like putting forth the effort.

When my arm/hand stiffness flairs up and makes typing difficult appears to follow two patterns. One, my best times is in the "morning" after getting a good night's sleep. As the day wears on, it gets more and more difficult to type as the stiffness gets worse.

Two, as I mentioned in a recent post, I'm noticing more off-times between doses of Sinemet. I take those three times a day, currently 6 hours apart. I've been noticing that by the 5th hour, I can feel the stiffness more, which results in more tremors. When I'm "on", I get more dyskinesia (uncontrolled movements) but that doesn't affect my ability to type so much.

As some of you know, my schedule was atypical. As a writer, I've found my best times to write tend to be at night once everyone else was asleep, when there are few, if any, interruptions. Since the last 3 years my schedule has become more flexible, I generally stay up all night, getting to bed around 5-6am generally, and waking up around noon. The problem was that by the time everyone went to bed and I finished necessary tasks like bookkeeping for my wife's business, my stiffness and tremors were at their worst, being literally the end of my day.

I think that is one big reason I've gotten so little writing done the past year. By the time I get to the point of having time to write at night, I'm not physically ready. Much more appealing to watch some videos than to struggle with typing. And when I did do some writing, due to a deadline, it took all night it seemed, like 4-5 hours, just to type out a 800-1000 word blog article. Not very productive.

In addition to that, having a sleep schedule during the morning hours forces me to be constantly changing my sleep pattern. At least once a week, I go to church in the mornings. That usually meant trying to get to bed by 4 am, then waking up at 6:30-7 am, taking a long nap around 2 pm once we came back home, then staying up until my normal time to get back on schedule. Throw in the holidays when I go to bed with everyone else while visiting, and often doctor's visits are scheduled in the mornings, and I found myself constantly changing back and forth between sleeping between 6 and noon, and staying awake. From what I've read, the constant changing of sleep routine causes problems with the normal cycle of REM sleep and non-REM sleep. I usually feel quite rested unless I've actually not had a lot of sleep, and I've rarely had problems falling asleep once I go to bed, but I know my internal clock is revolting at the changes all the time.

So for the last few months I'd been thinking about moving to a more normal sleep time and use my mornings for writing. Figured it made sense to use the best typing time of day for that instead of using it to work or run errands, something I can do with stiffness and tremors in my current state. But habits die hard, and I hadn't found the motivation to change.

Until now.

By this point, you are all probably wondering what dancing had to do with any of this.

When my PD symptoms started showing up, my wife and I were going to a gym and swimming most nights. So I was getting a regular cardio workout. In April of 2013, however, that changed. Our financial situation changed and we could no longer afford going to the gym. We planned on doing several things, like bike riding, walking, and the like. We even ordered a Tai Chi video planning on using it in the evenings on the TV. But as it turned out, we never really made that shift.

In part because my wife's house/office cleaning business started growing. In 2013, I started helping her with her jobs more so that we could add on more work so we could survive financially, being I found it hard to get a job, probably in part due to the obvious tremors I had. Who wants a bookkeeper with a shaky left hand and a typing speed dropping into the 20s and 30s at times? Apparently not too many. I can still do it, but not as fast as before. Plus I have to consider that stress brings out the tremors more too, as well as difficulty in thinking very fast at times. Some bookkeeping jobs can be pretty stressful.

Anyway, the result of that is we've ended up working later and later. Currently, we have three office jobs that have to be done in the evenings. One is every week, the other two are every other week. Which means at least two of the evenings every week we know we aren't going to be done before 9 pm. Throw in any special or emergency jobs, and you end up with the same situation. But even on the other days, it is unusual for my wife to be home much before 6, and rarely before 5:30.

So there are two hindrances we're dealing with. One, a time issue.  By the time we get home, get dinner, eat it, there isn't much time left before we get ready for bed. Especially on the evenings we clean an office (last night we came home around 9:45 pm). By the time you eat dinner late and wind down a bit, it is midnight or pretty close to it.

Two, is an energy issue. Not as frequently for me, though I can have that if I've done too much, but for my wife who works 9-11 hours a day cleaning 3-4 houses/offices a day (usually with a helper), by the time she gets home, all she wants to do is get dinner and rest. I don't blame her. In one sense, she's already had a good workout.

So since April 2013, I've fallen off the exercise wagon. And I know from reading and studying, a good exercise routine is one of the best ways of dealing with PD. Studies have shown that a good cardio workout routine on a regular basis actually slows down PD progression, strengthen weakening muscles, and manage symptoms better. I've focused a lot on supplements as you can tell if you've read my blog, and I'm sure some of them have helped. Meanwhile, however, I'm ignoring one of the best ways to deal with this disease.

Knowing I needed to fix this for some time, and knowing I seem to have trouble finding the time to workout and motivation to do it, we've signed up for membership at our local YMCA.

In my research, there are two types of exercises that are best for PD sufferers. The first is cardio, but not just any cardio. The best kind is one that has varied movements instead of a repetitive movement like running or swimming.

Yep, this is where the dancing fits in (finally you say). The varied movements help to hone brain-muscle coordination and balance as well as get your heart pumping.

One of the classes that comes with the membership is a Zumba class. Three times a week. Could be four, but we're not ready to sacrifice our Saturday mornings on a regular basis . . . yet. Problem is, two of those three happen at 9 am every Monday and Wednesday. Now you're seeing how all this is tying together. It became the final nail in the coffin to change my sleep schedule. The third happens on Thursday evenings, which means my wife can go with me.

My typing is getting harder and slower. I'll try to wind this down.

The interesting thing since I started these classes about 2.5 weeks ago is that Zumba is primarily used by women. More so than I suspected. The first time I showed up, one of the instructors said, "Here for Zumba? You must be the guy Erica mentioned was going to come since you are a guy and you're here." That's when I knew for sure I was going to be the only guy doing this. As it turns out, the fact there is a guy doing it has been talked about among the staff. I guess I stand out dancing among all those women.

I'm doing okay with it. Slowly learning the dance moves, mostly following, sometimes a half-step behind the leaders. But a hour of that does get me breathing hard and my heart-rate up, which is mainly why I'm doing it. I am feeling good physically, not counting my PD symptoms. And it is kind of fun at the same time.

The other type of exercise is something like Yoga or Tai Chi, both for developing muscle tone and balance. While I've not had any falls yet, I can tell I'm more unsteady than I used to be. In stage 3 of PD progression, balance becomes more of an issue. I'm currently in stage 2, when PD migrates to the other side of my body. Though I've not experienced much stiffness in my right hand or difficulty typing, it is tremoring more in the last 2-3 months.

They don't offer any Tai Chi, but they do have a couple of Yoga classes a week. One on Tuesday evening and one on Friday morning. My wife gets nauseous when doing exercises on her back for some reason. She attended one Tuesday evening class with me, and had to stop and sit up. More than likely on Tuesdays when she can go, we'll do some aquatic workouts as their is a class for that around that time.

Of course for me that leaves only one Yoga class a week. But the instructor for that class also teaches Pilates, which I'd not heard of until then. It is based on Yoga, but also includes poses that strengthen the core. As it happens, that class happens right after the Zumba classes on Monday and Wednesday, in the same room. So I've been doing that as well. First class I wasn't so sure I'd return, as some of the poses seemed to bring out the tremors. But I know I need it, so have continued to go and I'm doing better, though I still have a good way to go to be as flexible and limber as many in that class.

For instance, I can't sit with my legs straight out at a 90 degree angle. I feel like I'm struggling to keep my top body in a slightly back angle like I got stuck partway through a sit up. Then when she says, "Reach forward," I move about half an inch, still not crossing the 90 degree plane. But I think I'm getting better. Some moves are becoming easier than they were at first. And I've noticed my balance is better.

In the last 2.5 weeks, I've dropped another couple of pounds. I was averaging around 170 lbs, now more around 168. They did a body-fat measurement with a machine this past Tuesday evening, and I came out at 20%, which is in the bottom of my ideal range. I've probably not been at those numbers since 1989 or 1990. Got pretty close in the mid-90s and early 2000. So I'm in pretty good shape, and hope to stay that way.

So my current workout schedule is:

Monday: Zumba and Pilates

Tuesday: This month some weight machine work, but will likely be water exercise class when my wife is available to go.

Wednesday: Zumba and Pilates

Thursday: Zumba and likely some laps in the pool

Friday: Yoga.

Maybe some additional evening swimming when my wife is available and we can work it in.

That gives me Tuesday and Thursday mornings during the week to work on writing task. Now if only my to-do list wasn't a mile long. But that's a whole 'nother issue.

One more item, as when I mention my typing problems someone invariably says, "What about Dragon Naturally Speak?" For those who don't know, it is a program you install on your computer that will type out what you say. IOW, I could be writing this blog using it and say the words instead of typing them out. It would type for me.

I've got the program, thanks to a gift from my brother. It is installed on my Windows laptop. However, I've not been able to get it to work very well. I've decided the main reason is low RAM for the system. I ordered more memory, but it is being shipped from England, apparently. Right now I'm sure it is on some boat crossing the Atlantic. Should be here by the end of the month. Probably one of those times I should have gone to a local computer store. But I'm hoping that will speed that computer up and enable Dragon Speak to function better, and once it is trained and I get used to it, I can use it for writing. Until then, I'm stuck with the limitations of my fingers.

That's what I've been up to lately. Until next time.