Wednesday, March 3, 2010

Did I Really Complain?

Was that me who was complaining about the price of Azilect? Was it truly I who threw a fit about how much the co-pay was on it? While I stand that $60 is ridiculous, it works so well. No stiffness at all. My back doesn’t hurt, the top of my calf up through the back of my knee isn’t cramping. My right foot isn’t killing me. This morning took some time to get out of bed, but once I got my meds in me, everything seemed to diminish. My worst problem is some cotton mouth with no good hallucinations to go with it. The advantage to that is it keeps me drinking the water.
Now I’m not trying to sell anyone on the Azilect. I’m just trying to write down my own experience with everything. While for those whom this drug works, it really works. It can be a really nasty event for some people, too. I know I guy for whom Azilect was prescribed and he’s had speech problems ever since. For confidentiality’s sake, I shall not give a name for that. It’s something I have to be incredibly careful with. I need to follow the instructions on not only that, but also the dietary restrictions that it comes with—so I don’t have to follow the dietary restrictions, but see my last post for why I plan to anyway—and I need to start reading the warnings of everything over the counter that I take. I can’t even start a dietary supplement without checking with the doctor anymore.
The problem I’m faced with isn’t that the treatment option is working, but it’s working too well. This only makes the probability of this being Parkinson’s Disease(PD) more likely. Some would say, “you’re young… you have a lot of time left before this gets exceedingly bad.” And those fine folks would be right. I do have a long time before that happens. PD is a progressive disease, and it tends to progress even more slowly in those with young onset PD. On my days where I’m taking it one day at a time, this is how I consider things. Plan for the future, but don’t forget to live for today either.
I don’t always do that. PD deals with a shortage of dopamine producing cells. Any time you mess with brain chemicals and enzymes, you have a short-circuiting brain. This is why depression happens in around 50% of PD patients. I can’t say that I’m having any kind of depression issues, but I have my moments where I look too far ahead, and that looks rather bleak.
Today I’m okay. That’s half the purpose of doing this blog. To help me in keeping my thoughts on the here and now and not on what’s coming. There’s a lot for me to learn about my condition, and as I learn things, I can pass them along. Like the new research into PD. It seems that some researchers are starting to believe that it’s an immune system disease. They even claim that a vaccine can stop progression in people with advanced PD and reverse the symptoms in those in the early stages of the disease. There’s hope out there, but I’ll have a level of skepticism until there’s some kind of hard evidence. Not only is there no definitive test for this out there (with the exception of discovering lewy bodies in the brain during an autopsy), but I’ve already seen people trying to take advantage of hope for a cure too many times.
Now, I sit here praising my meds, but they haven’t been put to the test as of yet. I’m on vacation until Monday. It’s easy to say that it’s working wonders. I’m not under any kind of stress. While I’ve got some things I want to accomplish, I only need to put in two or three leisurely hours per day to accomplish those things. The rest of my day is spent relaxing, playing on the computer, playing on Facebook, trying to figure out this thing they call blogging, all the while, especially right now as I put these words onto the screen, listening to some classic rock. Today, it’s The Dark Side of the Moon. The true test of this stuff will be when I go back to work on Monday and add my normal daily stress. I’ll let you know how that goes.

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