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Saturday, April 5, 2014

Medication Experimentation - Part One

When my doctor said he felt pretty sure I had Parkinson's, my initial reaction was sort of nothing. I had a passing awareness of the disease, that it caused tremors, but that was about it. I had no idea how bad of a thing it was, or not.

So naturally when I returned home, I hopped on the internet and started researching both Parkinson's, Essential Tremors, as well as Multiple Sclerosis. I quickly ruled out MS. But for a period of time I thought I might have ET instead of PD. But I began to realize the PD symptoms fit what I was experiencing more so than ET.

As mentioned before, I went a few months before deciding to take the Sinemet (a combination of Levadopa and Carbadopa that stimulates dopamine production in the brain to replace what is missing) to see whether or not it helped my symptoms.

With PD, also both ET and MS, the medical establishment doesn't know why people get it, except in a small percentage of cases (genetic and exposure to certain chemicals), nor is there a cure for it. It is a progressive disease. Currently, all doctors can do is treat the symptoms. There is one potential drug in the final stage of testing that has the potential to slow or halt PD progressing in some people. That is a few years down the road, however, and won't work on everyone. Right now, all doctors can do is prescribe medicine to manage the symptoms. The progression of the disease goes on, unchecked. Some even say the typical PD medications end up accelerating PD progression. Also medically, levadopa drugs like Sinemet tend to bring on dyskinesia with long-term use, which can be just as debilitating as PD itself. Michal J. Fox is a good example of someone with dyskinesia.

While other diseases can be more life-threatening, many of them can also be cured and the person eventually return to a normal life. Whereas with PD, the common saying is you don't tend to die from PD, but you die with it.

But when it comes to trying different things and "drugs" it also has its benefits. Trying out other things, as long as they are safe to do so, isn't going to speed up or slow down PD itself. Even deciding to take nothing isn't going to speed up the march to ending up in a wheelchair should one live that long.

I started taking the Sinemet in August of 2013. I took only that for about two weeks. During that time, it did seem my symptoms lessened, but I didn't get the "all back to normal" experience that some do with the drug. I heard about a potential alternative treatment: coconut oil. The lady who promotes this had a husband with Alzheimer's. He was getting worse. She learned about coconut oil's medium-chain triglycerides that can pass through the brain barrier (a barrier that filters out bad stuff from getting into the brain area) and provide energy lacking in those patients from the inability of the brain to produce its own energy from glucose. At least, that's the theory. It has yet to be tested in clinical trials, primarily because there is no profit potential for drug companies to do so, and no donations have been given.

What I've learned is that there is an abundance of theories of what causes PD and how to fix it. So one has to be careful, especially if they are selling something. But when it made sense to give something a try, why not as long as it is safe to eat/take?

So I didn't buy the lady's book, but our grocery store carried a decently priced jar of organic, cold-pressed, pure coconut oil. Most of them are expensive, but while still not cheap, we found a large jar for around $10. The LuAnn version didn't have the quality needed to assure it would have the MCT needed.

I started taking 4 tablespoons in my morning oatmeal. The lady recommended 8. Tried to figure out what else to put it in. Tried my fruit smoothie, but I didn't like it. Oatmeal seemed to be the only thing I could put it in and eat it. And 8 T was too much for one bowl. Plus, while I'd heard about all the health benefits of coconut oil, I didn't want to overdo it and end up with a heart attack trying to fix PD.

So I stuck with 4 T a day. If I noticed any significant improvement, I'd up it to 8, somehow. So for another two weeks, I took coconut oil everyday except Sundays and a few Saturdays. During that time, I did seem to improve, but I had no idea whether it was the coconut oil, or the cumulative effects of the Sinemet.

To find out which one was the help and to find out if a worsening of symptoms might confirm the Sinemet was helping, I decided to stop taking the drug. By the end of one week being off of Sinemet, but still taking coconut oil, my symptoms got noticeably worse. It verified two things. One, the coconut oil wasn't doing anything for my PD symptoms; it was all Sinemet. Two, it confirmed that the Sinemet was helping for sure. Another confirmation that what I had was PD.

So I wasn't surprised when my nuerologist confirmed I had PD. I would have been surprised if she'd said anything different at that point. That said, while the coconut oil didn't seem to help my symptoms, it was still possible that it did help mental sharpness. Since a percent of PD patients get dementia, and it is a healthy oil anyway, why not keep at it?

So, even to this day I still take 4 T in my morning oatmeal. It is hard to say how well it is helping, since I may not be experiencing the same mental awareness if I weren't on it, but there is no way to know that other than to get off it.

After two weeks of being off Sinemet, the symptoms, noticeably worse than they were before I took it, were getting difficult to deal with, especially while chanting at church. So on 9/24/13, I started taking it again, at least until the neurologist said to do something different.

But that wasn't the end of my testing things out. Even now, I'm trying something new. But I'm out of time and this is long enough for one post. So I'll have to continue my story later Until then.

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