Lots of New News

Been a while since I've updated you all on my journey to date. I've been needing to get on here and update everyone on what's happening for some time, but have been too busy to do so. Since I have a few moments, I'm seeing if I can slip it in here today. So lets get to it.

The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.

It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.

If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.

Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.

As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.

The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.

That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!

Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.

Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.

The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.

So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.

That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.

Thanks for reading!

An Update

I'm way overdue for an update on how things are going. I've been trying to find time to do so over the past few months, but responsibilities kept getting in the way. As a result, I have so much to talk about, but I'll try to keep it pithy.

Amantadine

Last blog post I did, I talked about the drug Amantadine that my neurologist prescribed for me back in June. So I'm sure you've all been waiting with bated breath how it has turned out.

By way of remembering, this drug was prescribed to help me get rid of my dyskinesia (random movements resulting from using Sinemet and Azilect together, which for me was mostly head bobbing and left leg movements/toe curling).

When I first took it, it extended my dyskinesia from being a peak dyskinesia lasting about 2 hours, to extend it over most of the Sinemet dose, around 5 hours. Not good. But I remembered that my neurologist indicated I'd probably need to lower my Sinemet dosage, that I should experiment and find the right sweet spot of the mix of drugs for the best results.

So I cut my Sinemet dosage in half. That did result in losing my dyskinesia, but it also isn't as effective in controlling the tremors. The tremors weren't horrible, but sometimes get there between Sinemet doses. So it was a choice between having some tremors, or dyskinesia and very minor tremors.

The one benefit aside from that is Amantadine has helped my left hand to work better. It seems most effective, symptom-wise, in reducing my left arm's distonia (stiffness and muscle pain). That means I can type a little easier. That means, theoretically, I can do my writing easier. Which to a degree I have, though not a lot due to other high priorities on my to-do list. Because of that benefit, I've chosen to continue using Amantadine and put up with the tremors it leaves me with. For now anyway.

But the tremors are not all I have to put up with. There are side-effects, mostly minor. Increased constipation. More swelling of my left foot, especially if I don't get enough sleep. Slightly blurry vision, especially up close (that was happening before using the drug, which I think made it a little worse). A bit more sensitivity to light in my eyes; I've had a pair of prescription shades made to help deal with that while driving.

Thankfully, I've not experienced other side-effects which tend to cause some to stop using it. The most common is stomach upset. One of the more rare, but I know someone on a support forum who had this happen three months into using it, is hallucinations. No, that doesn't include my hallucinations of grandeur.

So for now, my prescription medications include Sinemet 14.5/50 mgs 3x/day (sometimes 4x/day), Azilect  1 mg 1x/day, and Amantadine 100 mgs 2x/day. That seems to be my best combo at this time, though not ideal. But I've yet to have a medication mix that is ideal--erasing all major symptoms.

CDP Choline

Another substance I've happened on lately is CDP Choline. A documented study showed the chemical compound increased dopamine production, as well as being neuro-protective, help cellular mitochondria perform better, and aided in improving memory function and/or slow the rate of dementia in those who have it.

It can be bought as a supplement. So I've been taking it in conjunction with Amantadine to help boost dopamine levels a little higher, as well as for its other benefits. So far, so good. I can't point to any specific noticeable symptom improvements, so if there are any, they are not particularly obvious. But I'm continuing to take it in faith that it is helping, and it may help fight the disease. I've also noticed no side-effects either, though the first dose or two, my body was adjusting to it.

I'm taking 1000 mgs 2x/day of it.

Inosine

Inosine is a substance currently proceeding to a stage 3 clinical trial, as noted recently on the Michael J. Fox Foundation's website. It has shown evidence of being able to slow the progression of Parkinson's. It and a cancer drug, nilotinib, are the two most promising substances currently in clinical trials, with solid hope of slowing this disease down. Currently, no drug has proven in clinical trials to be able to do so. Consequently, there is much excitement and hope in the Parkinson's community about these drugs.

The difference between the two is the cancer drug nilotinib costs currently around ten thousand dollars a month. Meanwhile inosine is available as a cheap supplement; a monthly supply is around ten dollars. That means I'd need a doctor's prescription and be rich to use nilotinib, but inosine is available and affordable now.

You'll note the cautions about using it on the MJF article about it. But the trials have shown it is generally safe to use. But since they've not revealed the ideal dose for safety and effectiveness yet, I figure sticking with the prescribed supplement dose will be safe until clinical trials show what the dosage should be for the most effective treatment. If the supplement dose is too low, at least I'll be one step ahead when it comes out in drug form, assuming it does.

So I've been taking it for a couple months now. No noticeable symptom improvements, but I wasn't expecting any as I'm taking it to slow the progression of Parkinson's and that is something I won't be able to know whether it is happening or not. Nor have I noticed any side-effects. I'm currently taking 500 mgs 2x/day of inosine.

Vitamin D3 and Zinc

My friend, Michael Strong, brought my attention to the link between vitamin D and cognitive improvement in diseases like Alzheimer's and Parkinson's. In my research, D3, when combined with Zinc and Magnesium, makes for an effective treatment for the prevention of dementia or the improvement for those with the condition. I was already taking magnesium, so I added a D3 and zinc supplement to my list of pills back in June.

I haven't noticed drastic improvements, but then again, so far I don't have dementia. That said, it seems I'm having an easier time thinking, especially in finding the right word to use. I still find myself struggling at times to find the word I'm intending to use, but now seems less frequent.

A word about dementia in Parkinson's. From watching a webinar on MJF website, and other research, there are two things I need to convey.

One, I've mentioned before that I've read 60% of Parkinson's patients will come down with dementia. But I qualified it saying it applied to those who start showing symptoms after the age of 60. I started showing symptoms at 51, so I don't fall into that category. But I recently read that overall, around 30% of Parkinson's patients will end up with dementia. So I wanted to give a more accurate picture of my potential to end up with that symptom.

Two, there are various levels of dementia, from minor to full-blown memory loss. The key thing to know is just because one has a minor dementia symptom does not mean they are destined to eventually have full-blown dementia. So suggesting that I might have some very minor cognitive difficulties as a result of this disease is not saying I'm destined to not know who my wife is at some point down the road.

Deep Brain Stimulation

I've discussed this before. My neurologist mentioned it to me two visits ago. At first I viewed it as a last resort, when the Sinemet no longer is effective in controlling my symptoms. After all, we are talking about sticking a probe down in my brain, and there is the risk of brain damage, however slight, to the process. So I was a bit squeamish about doing it.

But there has been a movement lately to do it earlier than later. One because it will be effective beyond the 5 years commonly quoted. It just means moving the probe on occasion to restore effectiveness due to the build-up of resistance over time to the electrical pulses around the probe. Two because if done earlier, it can eliminate the need for medicine like Sinemet, providing a longer quality of life. If done later, it only reduces symptoms and the amount of drugs needed to manage symptoms.

The prospects of being drug-free and somewhat "normal" again, allowing me to put more time and efficiency into writing, is very motivating. I'm now seriously wanting to look into this option. As a result, I expressed this desire with my neurologist back in June. He said the next step would be for me to see a Movement Disorder Specialist to be evaluated. So I indicated a desire to proceed. Strangely enough, I've not heard of anything happening on that front, or a referral being done. I need to check back with him, though my next appointment isn't too far off. In December if I recall correctly.

But there is part of me that would prefer a new procedure in development which is non-invasive using ultrasound and a MRI. Unfortunately, who knows how much longer it will be before it is widely available and approved by the FDA. The best I could do is find out how to sign up for a trial on it. Probably a long shot.

So, as I find out more about my chances for DBS, I'll let you know.

Exercise

I'm still doing my exercises I mentioned before: Zumba 4x/week, Pilates 2x/week, Hydro Fit 1x/week at my local Y. According to one instructor, I've become an inspiration to many there, probably along the lines of "If he can do that dealing with his disease, then why am I slacking off?" Apparently I'm talked about regularly as an example of someone not resigning themselves to defeat and fighting back.

Despite that schedule, I noticed my left arm especially, but also my right arm, losing muscle strength. A common result of Parkinson's as muscles deteriorate from constant movement of tremors and distonia. So I decided to up my game.

On the cardiovascular front, I've added a class called Body Step. Essentially an intense cardio workout using a bench you step up and off of in various patterns, in this case, synced with music. Much more intense than Zumba, which at first was exhausting but now only slightly so. It also works on strengthening the legs, obviously. The first time doing it, I was huffing and puffing after each song. Now, about 4 weeks into doing it, I'm still huffing and puffing, but I've noticed it isn't as exhausting as it was at first, so I'm improving.

Then to help the rest of my muscles, I've started going to Body Pump once a week. As you might imagine, it is a workout with weights set to music. Like Body Step, it is pretty intense. I'm using very low weights, and I've learned my weakest exercise is full lunges. So far, I've not been able to do them all, but I'm getting close. But I can tell already that it is helping my strength return.

So now my weekly schedule is:

Monday - Zumba and Pilates
Tuesday - Body Step
Wednesday - Zumba and Pilates
Thursday - Body Pump and Zumba
Friday - none
Saturday - Zumba and Hydro Fit
Sunday - none

This is one reason I don't have as much time to write as you'd think I'd have not having a full-time job. But I do believe it is making a difference in fighting back on this disease. So I keep at it.

The funny thing is, my son who goes with me to Body Pump (he likes weight lifting) is out of commission for a couple days, while I'm continuing to go, go, go. Of course, he's using more weight than I am, but still.

Disability

Not much to say here. Only that my wife has been wanting me to apply for disability for quite a while. I've done some research into it, discovered I could qualify. But I had to get my 2014 taxes done first. That finally happened last week, so Friday I applied. It will help since lately we've been pretty tight financially. Not having both of us working, and the added expense of my medications and supplements, has taken its toll.

It won't be until probably this Friday that I'll know the status of the application, and who knows how long before I know if I'm approved or not. Sometimes I know it can take several appeals. So keep me in your thoughts and prayers for a quick positive decision.

That's all for now. Time for me to go to critique group, after I get dinner in the crock pot, and after that, Body Step. Woot!

Tauroursodeoxycholic Acid - Round 2: Day 4.5

My bottle of TUDCA arrived Wednesday as expected. Started taking it that evening at the dosage I mentioned before: 5 250 mg pills through the day for 1250 mg/day. At the point I'm typing this, I've been taking it for 4.5 days.

Summary

TUDCA is improving the scores, but not as quickly or dramatically as before. But there is a factor to consider as to why that might be, explained below. But the fact it has affected the same symptoms positively is a further indication that TUDCA was the cause of the previous symptom improvements.

Now, onto the updated scores.

Rating scale: 1 = PD symptom at its worst. 10 = PD symptom not noticeable, feels normal.

Restarting TUDCA: Day 4.5

Low bass notes became functional again

Pre-Azilect: 3
Post-Azilect: 3
With TUDCA: 10
Week 1 off TUDCA: 6
Week 2 off TUDCA: 4
Day 4.5 on TUDCA: 8

As before, I noticed on day 2 some improvement in my ability to hit low notes with consistency and volume. This Sunday while singing bass notes, it confirmed it was significantly better than it was last Sunday. Notes last Sunday that sounded like a weak radio cutting out now stayed pretty strong. I'm not jumping it back to a full 10 yet because I don't think it is quite as solid as it was before.

Cogwheel motion

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 8
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5
Day 4.5 on TUDCA:7

Unlike before, I didn't see a huge improvement here, but there is some.  The most telling progress was in shampooing my hair. The left hand was more able to keep up with the right hand than it did last Sunday morning, but still wasn't quite as smooth or perfectly matching the motions of my right hand as it was by this point the first time around.

Typing speed and ease

Pre-Azilect: 4
Post-Azilect: 6
With TUDCA: 8
Week 1 off TUDCA: 7
Week 2 off TUDCA: 6
Day 4.5 on TUDCA: 7

This one is a bit spotty at this moment. Earlier this week, I started having pretty strong dystonia (stiffness) in my left arm and fingers, so that several times I had to shift to two-fingered typing to write anything. It seemed worse than it has been in some time, close to how it felt about mid-week when I went off the Sinemet for a week last November. Since restarting the TUDCA, there have been increased bouts of improved typing, but most nights still had a lot of dystonia that made typing difficult. As a matter of fact, I'd say typing right now is about the best night I've had in that regard since restarting TUDCA. So my 7 is for how I'm doing right now, 4.5 days after starting. If I'd been filling out this form last night, I probably would have kept it at a 6. If I continue to see more nights like this through this next week, I'll likely bump this score on up to an 8 again.

But obviously something is going on with my body symptoms this week before restarting TUDCA, which seems to have put the score into a bigger deficit than I recorded last Sunday. Indeed, I would say if I were to score this on Wed, I'd say it was at a 4. In light of that, the jump to a 7 is more significant than the numbers would indicate when compared to last Sunday.

Dystonia

Pre-Azilect: 4
Post-Azilect:5
With TUDCA: 8
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5
Day 4.5 on TUDCA: 6

As with typing speed, it was in a deficit since last Sunday, around a 3-4 rating. So this is some improvement, but I'm certainly not as well off as I was the first time by this point. Even now, I'm feeling a need to stretch my left arm thanks to the stiff feeling in my arm. That said, it is better than last week.

Tremors in left hand

Pre-Azilect: 3
Post-Azilect: 5
With TUDCA: 9
Week 1 off TUDCA: 7
Week 2 off TUDCA: 5
Day 4.5 on TUDCA: 6

For the same reasons, my tremors have only slightly improved at this point from last week. There are periods when I don't have much, and other points when it is present. On Wednesday when I restarted TUDCA, I'd rate them a 4. Maybe 3.5.

Toe-curling

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 7
Week 1 off TUDCA: 6
Week 2 off TUDCA: 5.5
Day 4.5 on TUDCA: 6

I've not noticed it as much in the last couple of days, so some improvement. If it keeps going, should rank higher next week.

Conclusions

Though the increases are not as dramatic as they were the last time, overall the PD symptoms have improved in the last 4 days taking TUDCA again.  Given the continued downward slide lower than were I was when the Azilect benefits kicked in--noted in "Post-Azilect" scores--it is obvious the gains made in the first 4 days are a little more dramatic than the above scores might indicate. It is like TUDCA first had to slow the freight train down before turning it around.

It will be interesting to note by next week is how many of my symptom scores have returned to equal or near-equal what they were the first time. Or will they max out at a lower level?

I think the answer to that depends on why my symptoms were worse for the days right before restarting TUDCA. I have three likely theories as to why that happened.

1. In the 2.5 weeks off TUDCA, my PD progressed at a fairly rapid rate. The wearing-off of TUDCA allowed that to manifest itself in symptom scores closer to pre-Azilect than post-Azilect. If true, I may not see symptom scores return to previous levels.

2. In the month since I started the first round with TUDCA, the Azilect has gradually become less effective. Going off the TUDCA revealed that loss during the 2.5 weeks before starting again. If so, I'd expect the symptom scores to return closer this coming week to what they were the first time around.

3. A longer shot, but for the first 2 weeks off TUDCA, my wife and I started the DASH diet plan for weight loss. The plan cuts out all sugar, including fruit, for the first two weeks. Then in the weeks following, fruit and grains are added in. It could be at the beginning of this past week adding those things in adversely affected my symptoms, as sugar is known to be a cause of inflammation. Especially if your body has adjusted to getting very little of it. My body may not have responded quick enough to the reintroduction of those foods to compensate, having been "put to sleep" by inactivity. If that is the case, I'd expect my body to adjust and those scores get up to where they were before.

4. A mixture of some or all of the above.

My hunch is it is primarily #2. #1 might have played into it, but I've not seen to date that rapid of a rate of symptom decline or progression of the disease since starting this journey. That said, PD is an unpredictable animal. I could progress rapidly for a month or two, then maintain those levels for the next 5 years. You just don't know what it is going to do. So I can't rule it out, but it seems unlikely. Especially in light of not having seen other symptoms not being tracked here not get significantly worse during that same period. For instance, no return of drooling or constipation, nor loss of mental abilities.

The coming week should give more insight to how TUDCA will do this time.

Next Monday I'll be seeing my neurologist again. He's already prescribed for my Azilect to be raised from 0.5 mg/day to 1 mg/day. I've not started that dose yet and don't plan to at least until I know the new pills are here. But even then I'll probably wait until my doctor visit.

On one hand, I expect the Azilect increase to help with my symptoms since it did the first time. On the other, I know it will increase my dyskinesia symptoms and I'm not looking forward to that. Though they are no where near as bad as Michael J. Fox's, I'm hoping the Doc will be able to help me minimize that.

So it may be TUDCA has just this one more week to do its thing before I throw more variables into the mix and muddy the waters.

Until next week.

Week 1: Off Tauroursodeoxycholic Acid

As noted last time, I was going to end my use of TUDCA when the bottle ran out, which would happen shortly after my Azilect 8-week-maximum-improvement window had ended. The window closed two Thursdays ago (1/15/15). My bottle of TUDCA ran out on the following Saturday, 1/17/15.

Consequently I've now been off TUDCA for a week. I figured it would be good to give a weekly update on any changes I've noticed.

By way of reminder, the plan is to see if being off TUDCA results in a loss of symptomatic improvements I experienced after using TUDCA to distinguish whether it was TUDCA or a second burst of benefits from taking Azilect that caused them. Now that the Azilect window is past, there is slim to no chance of any further improvements from it. I'll go for a maximum of 8 weeks--the time I can be sure all the TUDCA is out of my system--with no significant loss of symptom improvements before deciding the improvements came from Azilect. At any time before that, if I experience significant symptom improvement losses, I'll know that TUDCA was the likely source of improvements.

If the latter happens, I'll then resume using TUDCA and note if the improvements return. I'll also do some dosage increases to see at what point it no longer improves symptoms. If improvements return upon restarting it, that further solidifies that TUDCA was the cause of the improvements.

What I'll do is take each of the symptom improvements I listed on day 5, and using the scale of 1 to 10 (1 = symptom is horrible, 10 = symptom is near or at normal), relative to my experience, I'll give a weekly rating which will show a history of movement for each noted symptom improvement. Following that will be any comments if needed.

So, here we go!

Week 1 After I Stopped Using TUDCA

Low bass notes became functional again

Pre-Azilect: 3
Post-Azilect: 3
With TUDCA: 10
Week 1 off TUDCA: 6

This was the first symptomatic improvement to happen after starting TUDCA, and as you can see, it was dramatic. On day two of taking it, suddenly I could solidly hit the low notes I used to be able to hit before PD came on the scene. It was a complete surprise to me as no medication had changed that. No amount of dopamine had improved it. So I wasn't even thinking about it as something to watch for. Because of this, I felt this symptom improvement could fairly certainly be ascribed to TUDCA because there's nothing Azilect could have done to regain that ability. All it does is allow the dopamine in your body to not breakdown as fast, and so it lasts longer and allows for more buildup as you pump more in via Sinemet.

Early this past week, I noticed I had difficulty getting back down to those low notes. But if I worked at it, I could do it, but the notes were not as solid. This was confirmed while singing in church this Sunday morning, I couldn't hit the lower notes as solidly and with as much volume. Not quite as bad yet as pre-TUDCA, but obviously moving in that direction.

Cogwheel motion

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 8
Week 1 off TUDCA: 6

I've noticed a little more difficulty in using my left hand for general movement tasks than while on TUDCA. Key indicator was while washing my hair, my left hand wasn't as able to keep up with my right hand in smoothness and completeness of scrubbing my scalp. A touch of jerkiness appeared.

Typing speed and ease

Pre-Azilect: 4
Post-Azilect: 6
With TUDCA: 8
Week 1 off TUDCA: 7

It's become more frequent as the week moved on, but more periods where typing was difficult. There were times it felt as hard as it did pre-Azilect. The periods when I felt I could type with minimal impedance grew fewer.

Dystonia

Pre-Azilect: 4
Post-Azilect:5
With TUDCA: 8
Week 1 off TUDCA: 6

By the end of the week, I was feeling it more than I had been, in general, while on TUDCA.

Tremors in left hand

Pre-Azilect: 3
Post-Azilect: 5
With TUDCA: 9
Week 1 off TUDCA: 7

Sometimes it is fine, but there are times it has some shaking going on. More so toward the end of the week.

Toe-curling

Pre-Azilect: 4
Post-Azilect: 5
With TUDCA: 7
Week 1 off TUDCA: 6

There was a period while taking TUDCA I could have given it a 9. But in general, I only noticed a slight improvement. Probably due to the increased dyskenisa in my left calf muscle making it hard to indentify changes. That and the sore on my left toe next to the little toe from the toenail fungus giving me pain when any pressure is put on it.

I've noticed only a little change this past week, but that could be my imagination, thus the small amount of change. It is possible I could have kept it near a 7. Future weeks might reveal more, but it is also possible this one will jump around. Some days are better than others. The last few days I'd even say were a 7 or maybe a bit better. I had some problems standing this Sunday morning, but as the service went on, it seemed to settle down some, the dyskenisia that is. It seems when the dyskenisia isn't as bad in that leg, the toe curling does better. So how much is the lack of TUDCA or the dyskenisia from Azilect and Sinemet is hard to nail down.

That's my status for week 1 after no longer taking TUDCA. It does appear that I've lost some symptom improvements, at least in part. Future weeks should give a clearer picture whether these will continue downward or bounce back up due to a circumstance in this past week causing their negative movement. I figure I'll need 3-4 weeks of data before making a determination that the downward trend indicates the improvements were from TUDCA.

But if the loss of low bass notes is any indication, it isn't looking good for Azilect right now. The next two weeks should show if there is any definitive trend. Until next Sunday night/Monday morning, have a great week!

Day 6: Tauroursodeoxycholic Acid

Day 6, Wednesday, 1/7/15

Final day I'm going to do this daily log. From here on out I'll just comment about it if and when I have anything new to add in addition to my normal notes about how my PD journey is going.

I'll comment on how today went and then provide some concluding remarks about what it all means.

Side-effects: none noticed.

Symptom changes: I won't list them all out like I did yesterday. Overall, today was a little better than yesterday, but not quite as good as Monday, which for me was a peak day on symptom relief, especially tremors. Today I had some slight tremors when holding my hand out, like little movements in my fingers. Nothing major. Typing effort is about the same as yesterday. So all in all, I appear for the time being to have plateaued on my symptom improvement. Whether any long-term benefits will show up as this proceeds, we'll see.

Conclusions

Or to put it another way, what does this prove?

It proves to me that this drug may have produced symptomatic improvements in my Parkinson's Disease.

Read the above carefully. What I'm not saying is that this drug did produce my symptomatic improvements. I do think it is highly likely it did based on reasons I've given these past six days.

1. My Azilect symptom improvements had plateaued before taking this, leading me to believe I had most probably already hit my maximum benefit I would get from that drug.
2. The symptom improvements suddenly hit on days 3 & 4 in taking this, and have been sustained thus far. Any other explanation would be due to pure coincidence and thus less probable. The timing of their appearance leans to being from TUDCA.
3. One of the symptomatic improvements, regaining my low bass note range, had never been affected by increases in dopamine like the kind Azilect would have supplied, and Azilect has no evidence of reviving dying cells, only maybe slowing their rate of decline. It is highly unlikely Azilect played a role in that symptom improvement. Consequently, it is likely the other symptom improvements didn't come from Azilect either.

However, I can't rule out that Azilect kicked in with some additional benefits. as its latest point of possibly hitting maximum benefits is 8 weeks and these increases happened during week 6. Thus my need to do a further test to validate whether or not these improvements happened because of taking TUDCA, which I detailed yesterday.

One note to that plan. I received a call today moving my scheduled neurologist appointment to a later date. So I think I'll keep taking TUDCA until I'm past the Azilect 8 week point, which should be . . .

Doh! I've made a miscalculation on how long I've been on Azilect. Sorry, thought I had that nailed down. Not a big one, just one week difference. I started taking Azilect on November 20th, a Thursday. That would put this Thursday (today for many initially reading this) the end of 7 weeks, not six. I've been taking TUDCA during the seventh week of taking my Azilect. Sorry about that miscalculation on my part.

That means I have one more week to go before the potential Azilect maximum benefits could hit, if they haven't already. So that ends on 1/15. Around then or shortly after that I should finish this bottle of TUDCA I'm working on. So when I run out at the end of next week, I'll not take more until such a time when I can identify that the symptom relief I've gained this past week disappears, proving it wasn't provided by Azilect. Then if they reappear upon restarting TUDCA, I'll know it was that med that did the trick. So the results from that test may be sooner rather than later, as it happens.

Anyway, the only other potential and feasible explanation for these symptom improvements would be the placebo effect: I had enough expectation that this would help that my mind generated enough physiological effects to bring it about without help from the medication.

There is a lot of debate about that. There is evidence it happens, but tends to be upon symptoms your body could feasibly control on its own. Stuff like depression, pain, stimulation or depression of one's bodily systems, stuff like that. One study identified about 34% of the population is susceptible to the placebo effect.

I won't bore you with a lot of details, but I consider the placebo effect highly unlikely in my case. Mainly because I've taken a lot of things that I expected or believed would help my symptoms, some that appeared to have logical sounding scientific backing, yet none of them produced the least amount of symptom benefit. If I were susceptible to the placebo effect, it would have happened to me before now. I'd be here touting the PD curative benefits of magnesium. I'd have no need of TUDCA, Sinemet, or Azilect. It makes no sense why I'd have no placebo effect until this pill.

Despite my leaning toward ascribing these benefits to TUDCA, I'm not ready yet to say they are because of taking this drug. Therefore my statement "may have produced." After the results of the next test, I may then be able to say I'm 99% sure TUDCA is responsible. Until then, the jury is still out.

Also, note that I said, "in my Parkinson's Disease." That's because this is not a full clinical trial study, complete with a double-blind placebo group to rule that out. Because I experienced symptom improvements doesn't mean others will for sure. PD and an individual's reaction to a medication is highly individualized. The only way to determine if a decent subset of PD patients would experience improvements would be clinical trials with a good sampling of participates, and a placebo control group.

So I'm not saying everyone reading this should run out and get some and try it. I'm not promoting this as a cure for PD or its symptoms. I'm not saying it will slow down or stop PD progression, though there are pre-clinical and human clinical trials that have shown it is highly likely to do so.

All I'm saying is at this point is it seems to be working for me. I'm providing one more anecdotal data point in why this drug should be given higher priority on getting through clinical trials and approval by the FDA, if the studies warrant it, than it currently is.

That said, in case someone reading this has a strong desire to try this to see if it works for them or not, I'm compelled to suggest the following recommendations.

• Check with your doctor before taking this. There are potential issues he may want to check on, potential conflicts with any of your current medications, regular monitoring he may want to do to ensure it isn't messing up your liver or gall-bladder, etc. He may also have recommendations to offer.
• Do your own research. Doctors make mistakes. Check yourself, for instance, whether it will conflict with anything else you're taking. Those are easy to check on the Internet. Learn what the studies say.
• Be aware of potential side-effects and follow dosing instructions, like taking with food for the best absorption into your system and to reduce the chance of nausea or diarrhea.
• Don't rush into it. Or as Treebeard would say, "Don't be hasty." Check out the information well and the recommendations of your doctor, so you're being smart about it. There are low-percentage but potentially deadly side-effects you'll want to make sure you avoid, despite the fact it is well tolerated by most people.

Anything like this carries some risk (nearly every medication actually), but you'll want to not take any unnecessary risks as well. If this is going to stir up some dormant gall-stones, for instance, you'll want to know they are there to avoid that painful outcome.

But it is your own body. Use at your own risk. But you owe it to yourself to know what those risk are before jumping in with both feet. It is up to you.

That's about it for now. Have a great weekend. Until the next time I have something to say, peace.

Day 5: Tauroursodeoxycholic Acid

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.

Symptom changes:

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.

Day 1: Tauroursodeoxycholic Acid

I mentioned last time the experiment I'm going to do with TUDCA. The full name the abbreviation represents is in the title. Quite a mouthful. That's why I just use the abbreviation.

I received my bottle of it in the mail Friday, and as of writing this, have taken two doses, one 250mg pill around 2 pm, and one 250mg pill around 8 pm.

Before I get to any results thus far, I'll disclose what I'm currently taking and what my remaining symptoms are by which I'm gaging whether this will help me symptomatically or not. That, however would be only one reason to take it.

Currently, I'm taking 25/100mg of carbidopa/levadopa (generic Sinemet) 3 times a day. I've been taking that dose since January 2014. That helped symptoms significantly, but not completely. I still had considerable stiffness and pain in my left arm, and stiffness in my left leg. Tremors were still visible and when stress is applied, all those symptoms were magnified. But still, as I discovered in my one-week Sinemet holiday the first week of November, I would have been much more stiff and painful without it, to the point typing would be practically out of the question. By the end of that week I'd gone to a two-fingered typing approach, which was much slower but possible. Before I started taking my Sinemet again, even that was becoming too much of a chore.

About mid-November I started taking 0.5mg of Azilect. While sometimes it doesn't do a lot for symptoms, in my case it did significantly. Noticeably, my tremors are minimal (except apparently when I drink coffee) as is the stiffness in my arm and fingers. I'm not noticing any tremors in my right hand even though before I had developed a slight tremor in it as the disease progressed to my right side. I have periods of the day when it is better and worse, probably depending on my Sinemet schedule, which thanks to all the holidays has been messed up a good bit. Will get messed up again as we prepare for a trip next weekend. As mentioned last time, I'm now partway into 6 weeks of taking Azilect. Maximum benefit is supposed to be achieved within 4 to 8 weeks. So I'm in the later part of that range. In the last two weeks, I've not noticed any new improvement in symptoms, leading me to believe I've pretty much reached the maximum symptomatic benefit. If it is still improving, it is in very subtle ways I'm not able to detect.

I'm also taking a slew of supplements, mostly antioxidants, anti-inflammatory, and cognitive support. I won't bore you listing them all out. Mainly to say that I've not changed that in the last few weeks aside from adding in a probotic to the list to improve gut functioning. Interestingly enough, ran across a study indicating that PD patients tended to be missing a whole family of gut bacteria, so adding that was a good move. All that to say, however, that I've not recently added or changed any of my supplements that might account for any new changes upon taking TUCDA. Indeed, I also received a bottle of magnesium taurate, which will add tauramine to my body, something typically missing in PD brains compared to normal ones. But I'm holding off on it for at least three days to make sure any immediate changes can be linked more closely with adding in the TUDCA.

The only question mark is that it is possible the Azilect isn't finished, and could inject a new bursts of benefits coincidentally at the same time as the TUCDA is taken.  Not very likely, but is possible.

My current symptoms not sucuming to my current medication and supplement routine are a mixture of remaining PD symptoms and minor dyskinesia symptoms. Dyskinesia is, by way of reminder, lack of motor control as a side-effect of using Levadopa in the body, which is mostly what Sinemet is. The more of it you take and the longer you take it, the worse those symptoms get.

PD Symptoms left:

• Minor tremors in left fingers, gets worse under stress and can tremor the whole hand/arm.
• Stiffness in left arm and leg. Currently not much pain with it. On a scale of 1 to 10, 10 being bad pain, I'd say it is around a 2 in my left arm.
• Due to stiffness in my left arm and leg, my gait is affected. I walk differently. In this, it seems the Sinemet nor Azilect have had much of an affect on. 
• Sometimes when I swallow, only noticed when swallowing pills, my throat won't work right and I'll get water down my wind pipe. Usually happens at least once when taking my array of supplements in the morning and night.
• Less energy than I used to have. Not always as bad, but there are times I seem to run out and my movements get slow and draggy.
• My left toes want to curl under. Most noticeable when I'm standing or working on my feet. If I'm on them for 3 hours or more, it can hurt as the tips of some of my toes are constantly pushing down on the floor. This is also a symptom which Sinemet only helped a bit and Azilect hasn't seemed to do anything for me.
• Minor constipation. Mostly kept in check with my magnesium supplement. Before that, it tended to be the battle of the bulge, if you get my drift.
• Some "cogwheel" difficulties with my left hand. Associated with Bradykinesia (slowness of movement), it refers to lack of smoothness in hand motion, as if when going in a circle your hand acts like a cogwheel, creating jerky movements slowly. The Sinement and Azilect has helped that enough that I was able to use my left hand to cut my hair with the Flowbie last time, when prior to Azilect it was too difficult. But it is still present, just better than its been in many a month.

Dyskinesia symptoms:

• Slight head movement, like something is pulling my head down at times.
• Some antsiness in my left leg, such that if I stand for more than a couple hours, it wants to stop holding me up. So it wants to wiggle around.
• My dyskinesia like I had before, doesn't include rocking back and forth while standing this time. Hasn't become that bad yet.

One symptom I've noticed of late, so I suspect it is a dyskinesia symptom, is embouchure tightening. Seems to happen mostly while I'm working to clean houses, I notice my lips drawing into a tight pull enough that it becomes uncomfortable. I have to keep forcing my mouth to relax.

Another symptom that's been unchanging through meds so far is balance. I've not fallen, but I feel decidedly more unsteady than I used to be. I'd say I've been that way through most of 2014, but it hasn't seemed to have gotten worse yet either. Just there, hanging on the edge. I can still balance on one foot, though. Just not as confidently.

What I'm not having any problem with to speak of, that I was before, is drooling and fuzzy thinking. Which is good.

That's where I stand, and what symptoms I'll be watching to see if they improve.

For day 1 on TUCDA, I had the following results.

Side-effects: Nothing I can detect.

Symptom changes: Nothing I can detect. Tremors and stiffness and all other symptoms appear unchanged.

Based on the lack of any nausea (the most common side-effect of this substance) and what I've read is a minimum effective dose, I'm going to double them for Saturday so I get a whole gram of the med in one day.

Some studies I've read upon which I'm basing the use of this drug as far as safety and effectiveness:

Efficacy and Tolerability of Tauroursodeoxycholic Acid in Amyotrophic Lateral Sclerosis

Safety, Tolerability, and Cerebrospinal Fluid Penetration of Ursodeoxycholic Acid in Patients With Amyotrophic Lateral Sclerosis

Oral Solubilized Ursodeoxycholic Acid Therapy in Amyotrophic Lateral Sclerosis: A Randomized Cross-Over Trial

You'll notice that most all the human clinical trials have been done in relation to ALS, not PD. While the parts of the brain that are dying in each disease is different, what this does show is the results in pre-clinical trials on cells and animals, does indeed translate over to human subjects using the same functional approach, halting/slowing cell death. It also shows the drug is safe to use. There are cases it can be a problem, usually involving diseased livers or gall bladders, but otherwise tolerated by most people.

What we don't know is whether it will prevent PD brain cell death as well as it prevents brain and nerve neuron death in ALS. If it does, and there doesn't seem to be any reason it won't, it would be the first substance to actually slow or stop the progression of PD. So even minus any symptomatic improvement, it may be wise to continue to take this for the possibility of helping me not to get any worse in the foreseeable future.

This was a long one, due to needing to spell out the backstory for disclosure. Future updates should just be what I'm experiencing with the drug. Until then.

New Year, New Experiment

Happy New Year!

First, update on my Azilect. Have been taking it now for about 5 weeks. Full effect is suppose to be accomplished between 4 to 8 weeks. So I'm pretty much in the middle of that range. The last couple of weeks I've not noticed any signficant change in symptoms, so I think at least for symptoms, I'm at my maxium benefit.

The good news is that its effect upon symptoms has been very good. I'm currently feeling the most "normal" I've felt siince my PD began. Not that symptoms have gone totally away, but they've been siginficantly improved, including my typing speed is much better, though there are still times it doesn't work as well. But the stiffness in my left arm, the pain, is pretty much at a minimum, and my left hand tremor is slight. Additionally, during times of stress, like singing for 3 hours at church on Sunday mornings, is noticably easier, less stiffness and pain and tremors.

The only downside has been the dyskenesia side-effect never went away, if anything has increased slightly. Still not as bad as it was when my Sinemet was doubled, and still manageable, but has stayed there. Slight involunbtary movement in my head and left leg gets antsy and doesn't want to hold me up while standing for a prolonged period of time. The one good bit of news on that front is the involuntary multi-click on the mouse with my right hand that I attributed to my dyskenesia. I got a new mouse for Christmas from my son, Jeremy. So far, it has solved my multi-click issue. I guess my previous mouse was too sensitive.

So the improvement from using Azilect has been a good Christmas present. At the beginning of this new year, I'm going to try something new.

On a  Parkinson's forum I'm on, there has been a couple of people promoting the benefits of UDCA, a type of bile acid naturally produced in our bodies (around 5% of total) that is used primarily by doctors to dissolve a certain type of gall stones. Some studies on cells that have a cell death similar to what happens in Parkinson's brains has shown to have slowed, stopped cell death, even revived dying cells that were dying. So it has been postulated that the drug could potentially slow or halt the progression of PD and help in relieving symptoms. The two guys who have tried it noticed immediate improvement in symptoms the first day taking it, which seems hard to believe, but they swear by it.

While UCDA is a prescribed substance, another form of it that has taurine added to it can be bought over the counter, known as TUCDA. After determining that the risk it is unsafe for me to take was very small, I decided to give it a try and see what it does. So I ordered some from Amazon. It should have already arrived by this point, but should come in tomorrow. So in the next day or two, I'll be able to tell you whether it had a similar effect on me. Stay tuned!

And enjoy your New Year's day, and the 8th day of Christmas. Now, what did I do with those eight maids that are supposed to be milking these cows?

Azilect Results

Last time I indicated that my new neurologist had prescribed Azilect, a MAO-B inhibitor, to add to my Sinemet medication. I also mentioned, due to the high cost of the medication (the $600/month bill I mentioned last time was for the 1 mg pill, I was prescribed the 0.5 mg pill, so more like $300/month), I was applying for patient assistance from the company that makes the medication, Teva.

The good news is I was approved and received the medication. As of yesterday, Thursday, I will have been on it for 2 weeks. According to the documentation from the company, I can expect to see maximum results within 4 to 8 weeks. One person on my PD support group reported noticing benefits at 2 weeks. So I thought this would be a good time to give a preliminary report on how it is going.

First, I'll mention side-effects. If side effects are bad, it can offset the benefits of the med.. Like the dopamine agonist I was on earlier this year made me feel drowsy all the time. Not really sleepy, but like there was an edge of mental dullness all the time.

Thankfully, the side-effects have been minimal. For the first week, I experienced a slight stomach discomfort around 1 to 3 hours after taking it. One common side-effect is nausea.  My discomfort was minimal, and I never felt nauseous. It didn't last long, and didn't really bother me. I just noticed it. The second week, I've not even noticed any discomfort. So that's good. Some people have to give it up because it is too much for them.

A second side effect is some increase in dyskenesia, uncontrolled movements brought on by too much or prolonged L-dopa useage as I get in Sinemet. You'll recall when my previous neurologist doubled my Sinemet dose, it produced some of those effects: rocking motion while standing, weak/antsy left leg, head movement, and my right-hand doing multiple mouse clicks with one click (that did end up being due to the increase in Sinemet, it just didn't disappear as quickly when I went back to my previous dose like the other symptoms).

Some of those have returned, but not as severe as before. At least, so far, it is manageable, and probably not as noticeable by others. My wife hasn't commented on noticing my head moving like before, for instance, though I can feel it moving some at times.

Probably the most annoying side-effect has been related to the dyskenesia. At least I think it is. I didn't experience this last time, so I'm not sure. But when I try to go to sleep, my left arm starts wanting to tremor/vibrate. To the point I was having trouble falling asleep. PD tremors go away while you're sleeping, so once asleep they usually don't wake you up. But until this point, they would calm down enough as I was drifting off to sleep that I didn't have trouble falling asleep. Now, upon taking this medication, I would start to fall asleep, but then my mind would wake up a bit, and as a result the tremors would start up. A couple of nights I had trouble getting to sleep, and a few nights I would wake up after 3-4 hours of sleep, and then not be able to get back to sleep because of it.

My main tactic was to stretch and rub my arm for a bit. That would usually calm it down for a few seconds, hopefully enough time for me to drift off to sleep. What I found most helpful was saying the Jesus prayer as I breathed in and out, "Lord Jesus Christ, Son of God, have mercy on me, a sinner." It not only helped to calm me down, but gave my mind something else to focus on to distract it from thinking about the tremors.

The second week was better in that regard too. I've not had nearly as much trouble getting to sleep, though sometimes I do notice my arm being more tremory as I'm falling asleep. I'm also not waking up part way into the night anymore.

So all in all, the side-effects haven't been too bad, and mostly have gone away after the first week.

So have I noticed any improvements yet? Some. It hasn't been drastic, but a couple of things I've noticed have improved.

One, I seem to have more periods of time that typing is easier. Like right now, my left arm is stiff and hurting a bit as I type. That seemed to be the norm with just the Sinemet alone. But now I have more times when it isn't as bad, and my speed picks up a good bit. Occasionally it almost feels normal. Hopefully in the next few weeks, that will improve even more.

Two, the tooth brushing test. This year, I've noticed my right arm being affected by PD more. It currently tremors slightly, but hasn't yet felt a lot of stiffness nor had trouble typing, thankfully. Obviously it will get there eventually. But the one area I've noticed the most with my right arm is in brushing my teeth. It feels like my hand starts running away with the brush stokes, like a runaway train. Especially, for some reason, brushing my right teeth. In these last two weeks, I've noticed some control returning to my brushing.

So it is helping. In the next 2-6 weeks, I should know more fully how beneficial it will be. Good news so far. And on top of that, I get the med for free as long as I qualify for their program. Can't beat that. I'll try and update you on that in a few weeks, probably after Christmas.

Before then, however, I want to post about my drug holiday I did three weeks ago, and where my symptoms are at now. Then we'll see what 2015 has in store for me. Until then, Alonzo!

New Doc Update

I saw a new neurologist Monday, here in Marble Falls. Bottom line, I'm happy with him. Not only is he in town, so no more 2 hour drives each way to Temple, but he has dealt with this for a long time, was knowledgeable on recent developments, did more tests, and is considering more options than my previous neurologist.

By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.

MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.

One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.

There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.

Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.

The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.

The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.

Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.

Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms. 

So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.

Until I have more info . . . bye.