Day 5, Tuesday, 1/6/15
Today I didn't work with my wife; stayed home to get things done. So wasn't on my feet as much. And to see how I handled it, I had some coffee today, most of a cup. That tends to produce a little more jitters a few hours after taking it.
A note about coffee. I've long been a coffee drinker. Even bought green coffee beans and roasted them myself for several years. Best coffee I've ever drank. As a matter of fact, I should try some more of it now, as it may be better handled by my system than what we get at the grocery store.
Anyway, I've talked with a number of PD folk about their coffee intake, and it seems most don't have a problem with it. It doesn't cause them any additional tremors or other nasty symptoms. Yet, for whatever reason, it does with me. If I have coffee around noon, my symptoms will get noticeably worse around 5 to 7 pm. I've noticed when I take it and when I don't. Unless this has become some weird Pavlov's Dog effect mentally, coffee does make my symptoms worse. Just to clarify since I know most PD sufferers don't seem to have this reaction to coffee.
I also had another complication. Too much to go into, but because of taking my Sinemet at an odd time today, and because the second dose would have fallen right in the middle of a high-protein meal, and in part because I forgot to take it any earlier, I ended up skipping it and picking up on my normal schedule when I take the final dose of the day. In effect, I only took two of my Sinemet pills when I normally take three. That's going to affect the results as well.
Here's how it went today.
Side-effects: none to report.
No new improvements to mention. I'll give you the current state of previously known improvement.
Low bass notes - still able to hit them solidly. I don't expect this to get any better because I'm pretty much able to sing now what I could before PD. I'm fully back to normal on this symptom.
This is a symptom improvement that I most fully attribute to TUDCA since no medication has affected that. I've been on Sinemet for a whole year and it never got better, even when my doctor doubled my dose. And it isn't likely to be Azilect either because all it does is allow the dopamine in my body to live longer. More dopamine never fixed this. Yet, three days after taking TUDCA, it suddenly improves. While it isn't impossible that the reported neuroprotective effect of Azilect had something to do with this, it is highly unlikely given the timing.
Cogwheel motion - So far I'd say this is being maintained at the new level of improvement. To put it on a scale of 1 to 10, with 10 being "normal before PD", I'd give it about a 7, maybe an 8. Previous to taking TUDCA, I'd say it was a 5, even with improved effects from Azilect by that point. Before Azilect, I'd say 3-4. And now I have times when it is doing closer to an 8 or 9. Not totally normal, but it is substantially better.
Typing speed and ease - Probably due to a combination of the coffee and missed Sinemet pill, today was a little worse than yesterday. Not horrible, but it wasn't as effortless to type, indicating a little less fine motor coordination in the fingers probably due to increased stiffness in the arm.
Dystonia - Stiffness wasn't as good as yesterday for reasons already mentioned. On a scale of 1 to 10, 10 being no stiffness, yesterday was a 7 or 8. Previous to that it was a 5. Prior to Azilect, around a 4. Today I'd call it a 6.
Tremors - Due to the above mentioned factors, I had more tremors than yesterday in my left hand. It wasn't drastic. While yesterday I'd put it at a 9 on the 1 to 10 scale, today it was more like an 8. Minor tremors present, but nothing horrible. Previous to TUDCA I'd put my tremors around a 6, maybe 7. Prior to Azlect, a 4. Maybe 5. Considering I had a cup of coffee and missed a Sinemet pill, that's not too bad, actually.
Toe curling - On this one I'd say I didn't notice any change up or down. Still maintaining the improvement I noticed earlier. But I should note I wasn't on my feet much today since I stayed home. Mostly worked sitting down at my computer. Tomorrow I'll be helping to clean a house and an office building, around 5 hours of work. So I should have a more definitive test of any changes up or down.
I think that covered them all. Did I miss one?
Where I'm going from here
As you may know from previous posts., many of these symptom improvements, while they appeared directly after taking TUDCA so the probability suggests it is the cause of the improvements, I can't rule out that Azilect has provided a new boost of benefits coincidentally at the same time, giving the appearance that TUDCA is responsible. If I'd been smart, I would have waited another four weeks to run this test, after Azilect's longest point of the maximum benefits range--4 to 8 weeks--had pasted. I started this test at the end of my 5th week, conducting my experiment during my 6th week taking Azilect.
Since I can't totally rule out Azilect's influence in these increased symptom benefits, I'll need to do an additional experiment. My plan is to continue to use TUDCA until February 10th. At that time I have an appointment with my neurologist. I'll go over these results with him to get his feedback.
Then during the remainder of February, I'll stop taking TUDCA. I'll watch to see if any of the symptom improvements I gained this week disappear. If they do, then it would certainly be the TUDCA causing them. Then when I get back on it in March, I should see those symptom improvements return, further verifying it is a result of TUDCA, not Azilect.
If I don't lose the increased benefits, then it will indicate that those improvements were a result of Azilect getting a second benefit wind. Then I'll go through March off TUDCA. Mainly because I don't know how long it may take for TUDCA benefits to wear off. Since its main mechanism is to slow cell death and revitalize dying cells, it means once the medicine wears off, there may be a period of time before those cells start dying again enough for symptoms to return. So it may take more than February to confirm that Azilect is the real cause of improvements.
Likewise, if symptoms return to a worse state within a week or two being off of it, I'll have my answer and get back on it. In essence, I'll return to using TUDCA if and when the symptoms it appeared to improve return, whether that is 2 weeks after I stop using it or 3 months.
Naturally I'll keep my readers here informed when those shifts happen. For now, though, I'll make one more daily log post for day 6, and that will be it until I have new info to communicate. I'm ending it just one day short of a week because I'll be out of pocket from Thursday evening until sometime Sunday. I know it would be near impossible for me to pull off a day 7 log post on Thursday night.
Plus, much to my surprise and delight, I think I've shown that TUDCA has potential as a PD symptom treatment. Additionally, if the ASL clinical trial results are applicable to PD cell death, this could be the first medicine to substantially slow the progression of PD. I hope to confirm or dismiss the former in the months to come with my next experiment. The latter will need a clinical trial to confirm it works the same in PD brains as it does in ALS brains and in test tubes on dying PD cells. When we'll see that, who knows.
In the meantime, if my next experiment proves to me my symptom improvements are due to TUDCA, you can bet I'll be using it from here on out unless my doctor tells me I shouldn't for some reason.
Tomorrow, my last daily post on this topic.