Tuesday, October 27, 2015

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!

Tuesday, June 23, 2015

Exercise and Zumba

Today I have a "treat" for you. I'm revealing footage of a lumbering dude doing a Zumba dance. Aren't you excited!

More like a shaking, lumbering dude. As I explain in the video, I've been experimenting with my Sinemet doses in conjunction with my new medication to find a "sweet spot". I obviously wasn't in the sweet spot in this video. Trial and error is so much fun! Not!

Anyway, I update you on how that trial and error is going, and talk about the exercises I'm doing, along with the video of me doing one of our many Zumba dances.

The song is "Paso a Pasito," a Zumba original. The girl dancing with me is 11 years old and named Addy. She won second place in  a talent competition doing this song. She at least shows you what I should be doing. I need to think BIG movements more. lol.

Enjoy.


Tuesday, June 16, 2015

Dyskinesia and Doctor's Visit

Greetings and salutations!

I'm trying something new: a video blog in conjunction with this blog. It will allow me more flexibility and be able to show, not just tell you what is going on with me.

First up, I talk about my dyskinesia symptoms and what the doctor is hoping will help with it.

Enjoy!


Tuesday, May 19, 2015

Partners for Parkinson's Event

This past weekend, dovetailed into my 33rd wedding anniversary, my wife and I attended an event titled "Partners in Parkinson's," a group associated with the Micheal J. Fox Foundation which seeks to develop help for Parkinson's patients and their caregivers through sharing information and helping to develop a "care team" for the patient. (Now that's a good run-on sentence!)

Thought I'd give a summary of how the event went.

First, there was the obvious benefit of meeting other people with Parkinson's. You get to compare notes, see others are not only surviving this disease, but thriving. And of course we saw a few who were further along and in worse shape than I am currently.

Second, we discovered some new resources in exercise, and other similar helps. Several people emphasize the need for exercise to help deal with the symptoms of this disease. Info like that confirmed I'm on the right track with all the exercise I've taken on in the last couple of months. I believe it is helping me in more than one way, but it is hard to nail down specifics other than an overall feeling of doing better.

Third, we learned a few things that we didn't know before. Some of it relating to questions we asked one-on-one with panelist and a movement disorder specialist.

One of those was in relation to dopamine and its long-term effectiveness. We were told that it is a popular myth that dopamine loses its effectiveness through long-term use. Rather, the reason one needs to take more and more of it is because the disease progresses. As more dopamine-producing neurons die, it requires more and more of the drug to offset the loss of dopamine. So the slower the progression, the less of the drug that will be needed over a period of time.

Also learned more about why dyskinesia (involuntary movements as a side-effect of the drug) eventually happens. The neurons that produce dopamine also store it. In the beginning of taking the drug, not only is there less dopamine being thrown into the brain, but the neurons still alive are able to absorb and store some of it to help regulate how much is in the pathways at a given time. Too much overexcites the nervous system and causes the involuntary movements.

As more neurons die, not only is more dopamine needed via the drug, but the ability of the brain to store and regulate the dopamine levels diminishes, resulting in more dyskinesia due to too much dopamine hitting receptors, triggering movements the brain didn't intend.

What this means for me since I've developed dyskinesia so early may be either my progression has been fast and I've lost a significant number of neurons over the past two years, or my symptoms started later than most at my stage of neuron loss.

Another "myth" I learned about is the idea that deep-brain stimulation's (a pacemaker for the brain) effectiveness wears off around 5 years or so, then it's done. What really happens is the area around the probe gets "calloused" due to the flow of electricity from the probe. As it becomes less sensitive around the probe, it blocks more and more of the electrical current, making it less effective.

The solution to this is to move the probe to a different part of the brain. Then it can be just as effective as ever in regulating movement symptoms. So DBS isn't just a temporary fix. It just requires some maintenance for long-term use.

This is one reason why many are now suggesting DBS earlier than later. Early on, it can be sufficient to regulate movement symptoms without additional medications, resulting in a higher quality of life early on. As the disease progresses, DBS may not be able to stop all the symptoms and require additional medication. Typically people who get DBS in later stages are able to reduce their medications and still the combo doesn't eliminate all symptoms.

So if I wait until I'm pretty bad off, DBS may bring me back to my current condition. But if I get it now, I might be able to be "normal" without medication for a period of years. Which would give me more writing time and an efficiency I currently don't have.

I just have to get past the idea of having a probe stuck in my brain. But being "normal" for a few more years, and productive, is motivating me to consider it sooner than later.

Anyway, the event was worthwhile, and the whole weekend was good. We had a great anniversary and enjoyed visiting with friends we'd not seen in a while. Many blessings to count.

Wednesday, April 1, 2015

An Inside Look at Parkinson's Disease

For Parkinson's Awareness Month, which is April, I wanted to give an inside look at what it is like to have Parkinson's Disease (PD). Some people know something about it either through experience or study, but many either know nothing about it, or have a very incomplete or stereotypical understanding of it.

To do that, I'm going to take you through a list of the most common symptoms someone with the disease tends to experience and relate my experience with them as it may apply.

Which leads to a disclaimer. With PD, there is no one-size-fits-all list both on symptoms or treatments. Any one PD patient may experience only a few of these, or several. A symptom one patient has, another may not. Even the characteristic tremors are not evident in all PD patients.

Some of the symptoms I'll list I've not had . . . yet. I may never have to deal with them. Some that I have, another PD patient will never have.

What is the basis for PD?


If you already know this information, feel free to skip to the next heading. For those who need a fuller picture, here are the basics you'll want to know.

Currently, PD is an incurable and progressive disease, meaning, as time goes by, it becomes worse. Commonly, there are 5 stages of disease progression.

  • Stage 1: Minor symptoms that don't impair daily life.
  • Stage 2: Symptoms cause tasks to take longer, but are still doable. Symptoms often progress to the unaffected side during this stage.
  • Stage 3: Characterized by balance issues, freezing, tendency to fall.
  • Stage 4: Many task are not able to be completed without assistance. Walking often needs a walker or other device. Can't live alone due to lack of mobility and tendency to fall.
  • Stage 5: Wheelchair bound, needing continual care, unable to do much for themselves.

Currently I'm in stage 2, which can last for who knows how long. Could be a couple of years or 15. Stage 3 is considered a turning point in making life especially difficult due to freezing of movements and the ever present threat of falls.

There is a common saying: you don't die from Parkinson's, you die with it. True in a literal sense. However, PD is often the reason for the other things that can kill you. Most common are falls resulting in life-threatening situations (obviously the older one gets, the more likely that can happen) or immediate death by blows to the head or other significant organs. Another example is depression resulting from PD that can lead to suicide, as happened in the case of Robin Williams recently.

Currently, it is unknown what causes PD. There are a few known contributing factors, including genetics and exposure to pesticide, but those only account for a few percentage points of those who come down with the disease. It has been determined that the causative factors for it tend to be 20 to 30 years prior to the manifestation of symptoms. Which means whatever caused me to get this disease likely happened in the 90s when I was in my 30's.

Some of the processes are understood. A simplified explanation is that the disruption of normal brain-chemical functioning results in dopamine-producing neuron death. Dopamine is a critical neuron messenger in the brain which controls movement, among other functions.

As we age, we naturally lose the ability to produce dopamine, but normally it never drops below the level where it affects the ability of the central nervous system to operate efficiently. For PD patients, this loss is sped up so that at some point in life, the dopamine supply drops to a critical level, making bodily movements difficult. As the PD patient ages, those supplies get lower and lower, resulting in the progression mentioned above.

It is estimated it affects around 6% of the world's population. It is the second biggest cause of neurological disorders, behind Alzheimer's.

It is said by the time a PD patient starts showing symptoms, 85% of the brain's dopamine-producing cells have died. Due to this progression, the bulk of PD patients don't start showing symptoms until after 55 years of age, which is why it is often associated with senior adults. However, there are a large number of patients who develop symptoms earlier than that. Some as early as their 20s (like Michael J. Fox) or early 50s (like me). Like I said, there is no one-size-fits-all when it comes to PD.

Parkinsonisms


The following list of symptoms are known as Parkinsonisms. That is, they are characteristic of PD. However, these symptoms are not always caused by PD. Indeed, there is currently no test to determine if a person has PD. Diagnosis is made by observing the presence of the symptoms, often prescribing a levadopa drug like Sinemet (which adds dopamine to the brain--if symptoms go away, it is a strong indicator of PD being the cause, but not definitively), and the elimination of other causes, such as strokes, ALS, multiple sclerosis, etc. One common disease that can produce tremors, for instance, is Essential Tremors. Like PD, they don't know what causes it, there is no cure, but isn't nearly as long-term debilitating as PD.

So if you have or know someone who has any of these symptoms, it doesn't necessarily mean it is PD. It does mean it is time to go see your doctor to find out what it is.

With that said, below is an non-exhaustive list of the most common PD symptoms and my experience, if any, with them.

Loss of smell


This is often one of the first symptoms people may notice. With it goes the ability to taste as well too. One commentor on a form I frequent recently commented that all wine taste the same to him now, so he no longer feels a need to splurge for the more expensive wines.

This is also a good spot to note that not all PD symptoms are motor related. There are several, as you'll see, that have little to do with movement ability.

So far, the loss of smell is one symptom I've skipped. If I've lost any smelling ability, it hasn't been enough to be noticeable. I may experience this later, or maybe never.

Depression


This is another early non-motor symptom. Due to the changes in the brain, plus the news that one has a non-curable, progressively debilitating disease, is depression. Aside from making life seem dreary and hopeless, it can lead to suicide if it gets bad enough.

Thankfully I've not experienced much depression thus far. The only depression I've had in the last four years I know wasn't due to PD, and happened before PD symptoms set in. It's possible PD may have contributed to it, but it only lasted a month and I was able to exit the depression once I dealt with the actual issues underlying it.

Dystonia


This is a condition that can have several causes. It refers to a lack of muscle tone and stiffness in a limb or other parts of the body. It can be painful.

With PD induced dystonia, the lack of dopamine produces erratic signals to the muscle, causing it to be in a continual state of contractions. This produces stiffness and pain, and lack of usability of that limb.

I have this primarily in my left arm, and to some degree in my left leg/foot. When I'm focused on something physical, I also experience it in my mouth.

The last time I took a "holiday" from my Sinemet medication, in part to see how much symptoms had developed, by the end of five days my left arm was so stiff and in pain it was unusable for task like typing. Needless to say I won't be trying that again.

This is the first symptom I noticed back in 2012, though I didn't know what it was at the time. When I was driving, my left hand involuntarily clamped hard on the steering wheel, causing tightness and pain in my left hand. The second symptom was pain in my shoulder when bringing my left arm over my head for a swimming stroke. The third symptom I noticed toward the end of that year was difficulty in typing as smoothly and quickly with my left hand--the loss of fine motor control of the fingers. All those resulted from dystonia.

Currently I always feel some stiffness and pain in that arm, but it gets better during peak periods of my medication, and worse towards the beginning and ends of my doses (known as off times). Like right now I'm 20 minutes from taking my next Sinemet pill, and typing is slow and difficult, with a constant dull pain along my arm. Thankfully, though minor tremors have migrated to my right arm/hand, it hasn't developed any dystonia so far. Hopefully it stays that way for a few years.

This is why if you visit with me in person, you'll notice I stretch my left arm, hand, and fingers a lot, and rub them when it gets bad, as it seems to help.

Another way a PD patient can get dystonia is from the levadopa medication itself. It is a subset of dyskinesia which we'll talk about in a bit. With the infusion of dopamine through drugs, the central nervous system's connections with the brain get over excited. One result of this is repeated contractions of a body part.

For me it is toe curling, specifically my left foot toe next to my small toe. Consequently, unlike my left arm's dystonia, my left foot's dystonia gets worse during a peak dose of Sinemet. If I'm on my feet much, that left toe begins to hurt as it is constantly pushing into the floor or bottom of my shoe. Sometimes it causes me to limp.

As the disease progresses, the Sinemet becomes less effective and the affected limbs more painful.


Tremors


This is the classic symptom most people think of in relation to PD. Due to motor-control neurons mis-firing, because of the lack of dopamine in the brain, erratic signals are sent to certain muscle groups, causing them to jerk or do repetitive motions.

One common motion you'll see is called "pill rolling," as the thumb moves in a circular motion around the fingers as if rolling a pill between them. Not all PD patients do that. I've experienced it some in my left hand when tremors were bad, but it has been a while since I've done that mostly likely thanks to my medicine.

This was the fourth symptom I noticed late in 2012. My left hand developed mild tremors. Over the course of 2013, it became noticeably worse and led me to go see a doctor. By the end of 2013, I had been diagnosed and was on medication for it. About the middle of 2014, my right hand began to show signs of tremors, indicating the disease was spreading to my right side.

Aside from making some task more difficult, the tremors make typing more of a chore. Frequently, my left fingers will be resting on the keyboard, and a finger will twitch, causing involuntary keystrokes that usually don't belong on the page. That combined with the dystonia means when I type, I often do a lot of backspacing.

My medications currently keep my tremors under control most of the time, except during off-times: at the beginning and end of a dose. However, stress tends to bring them out in full force. Like the last time I was stopped by the police for a taillight being out. When he asked me for my ID, my arm and hand were shaking like a leaf in a strong wind. Even minor stress can uncover some tremors at times, like focusing on something intensely. For example, when I do Yoga or Pilates, my hands tend to tremor some.

Over time, the medications will become less effective, requiring more extreme measures like Deep Brain Stimulation surgery (a pacemaker for the brain). Eventually, if I live long enough, not much will keep me from tremoring away. That usually happens in the more advanced stages: 4 and 5.

Dyskinesia


This is another form of uncontrolled movement. It is not caused by PD itself, but is a side-effect from using levadopa therapy. Since taking dopamine straight will not get to the brain, thanks to the brain's blood barrier, the primary treatment for PD symptoms is using a precursor of dopamine, levadopa, which can cross the blood-brain barrier. It then gets converted to dopamine once inside.

By supplying the brain with additional dopamine, it helps to replace that which is missing due to cell death, allowing the brain to operate normally. It effectively reduces many PD symptoms, sometimes making the person feel perfectly normal again, especially in the early stages. I'm one of the more unlucky ones in that regard, in that it has never made me feel perfectly normal, but it does significantly reduce the intensity level of my symptoms.

However, as mentioned above, it also has the side-effect of over-exciting the brain and central nervous system's connections. This results in a different form of uncontrolled movements resulting not from the disease, but extended use of the medicine.

The average time a person might expect to see dyskinesia symptoms after starting levadopa therapy is around 6 years, so I've read. Usually it takes higher doses over a period of time before symptoms manifest.

Unfortunately for me, I've beat that average by a mile. I took some levadopa in 2013 for about one or two months. Then I was off it until restarting in January of 2014. In September of 2014, upon doubling my Sinemet dose (one form of levadopa commonly used), I experienced my first dyskinesia symptoms. So we dropped it back down at the end of September and the symptoms disappeared.

Then my new neurologist prescribed Azilect. It isn't levadopa, but inhibits the breakdown of dopamine in the brain so it builds up a bigger supply. In effect, it magnifies the effect of any levadopa one is taking. When we started the 0.5 mg/day dose, I noticed a reappearance of dyskinesia, but fairly minor and manageable. Since we've upped it to the 1 mg/day dose, the dyskinesia has become significantly worse.

The difference between these uncontrolled movements and tremors is that these are smoother and bigger, and not limited to my hands. The primary areas it affects are my head, causing it to bob around, my left calf muscle and foot, and a general wobbly feel in my whole body. It feels like someone is putting their hand on me and pushing it around. So a lot less jerky like tremors. It can also make one talk less smooth, sort of stuttering.

A good example of this symptom is Michael J. Fox. If you pull up any of his recent interviews on YouTube, especially between the time of 2000 - 2010, you'll see him wiggling around a lot. Recently they came out with medication that helps reduce those effects, and I believe he has been using it, so real recent interviews he's not quite as bad. The bad news is that medication generally only last around six months.

As I mentioned previously, another effect of this symptom is additional dystonia due to the uncontrolled movements. Currently, I experience that in my left toes and my neck, which tires when my head moves around too much.

Probably the hardest aspect of this symptom to deal with so far has been standing or being on my feet for long periods of time. The hardest of those tends to be at church when I'm on my feet without moving much for around three hours. My left leg gets very antsy, like restless leg syndrome, making it an endurance exercise at times. That combined with the pain in my left toe make for a "fun" service.

Currently I'm not as bad as what you'll see if you've seen Michael J. Fox. But I'm on the road to it unless some changes in my medications eliminate it.

Constipation


Ah, everyone's favorite subject. PD tends to make one more prone to constipation. Let's just say I've experienced some real struggles with this one. I used to treat it by eating a good supply of prunes every night, but found a magnesium supplement works quite well. I take a magnesium taurate supplement twice a day, which gives me 200 mg per day. Haven't had any problems with this for months.

Nuff said.

Bladder/Bowel Control


PD can affect how well a person can control their excretion processes. I've had more than one "accident" on both ends of the system. Sinemet seems to have helped, as has taking a good probiotic (PD patients tend to be missing whole families of bacteria in the gut).

My two biggest problems with this so far relates to the bladder. One, at times I've lost my early warning system. When I start feeling I need to go, I've got precious little time before it becomes desperate. This makes taking trips a real pain at times.

Two, there are times when I feel I need to go shortly after having gone. Sometimes it is a dribble, other times it is substantial. Oddly enough it tends to happen most when I'm working in the kitchen. One time making breakfast I had to stop what I was doing 5 times to go. Very annoying. But it comes and goes. Most of the time I don't have this problem.

Runny Nose (Rhinorrhea)


This is one symptom many doctors are not even aware of. Studies have shown that it affects around 50% of PD patients. It doesn't appear to be due to medications, but the disease itself. It too can be one of the early symptoms.

I first experienced this in September of 2012, shortly before my difficulty with typing set in. I caught what I believed was a cold, but after the cold symptoms disappeared, the runny nose stayed and has never gone totally away. At times it has been better, but currently I blow my nose several times a day.

Incidentally, earlier in 2012 I began having a chronic problem with boils. I discovered it was caused by an infection in the sinus cavities. After applying an antibiotic ointment for a period of time, the boils stopped. It wasn't long after that when the dystonia in the left hand began.

My doctor said the symptoms weren't related, that I likely had developed allergies and prescribed an antihistamine. It wasn't until last year that I discovered the above article and the link between the two.

Certain nasal sprays have reportedly helped.


Bradykinesia


This refers to slowness of movement and reduced movement. Unlike other symptoms of PD, this one is present in all cases. The most common examples are lack of swing in an arm while walking, slowness to initiate movements, and small handwriting.

I've experienced this symptom as well. My left arm doesn't swing well unless I consciously force it. My handwriting does have a tendency to shrink in size. There are times I feel like I'm moving through molasses and I'm slow to respond to stimuli.

I believe my medication has helped with this some, but it hasn't gone away.

Blank Face


This was an early symptom my brother noticed. Many PD patients tend to have an expressionless face, like they're not all there. It was also one of the first symptoms my neurologist noticed upon my first visit.

The important thing to know is that just because someone with PD has a blank face, it doesn't mean they've checked out. It is simply one symptom of PD where facial muscles have lost control.


Drooling


Nothing like drooling to make you feel you're reverting to your baby days. But it is a common symptom of PD. Obviously a little embarrassing in public.

I did have a period where I kept catching drool trying to escape from my mouth. My medications have kept it under control thus far, so you're not likely to see me drooling any time soon. But as medications become less effective, I'm sure it will be part of my future.


Dementia


Around 60% of PD patients experience dementia. Dementia isn't merely forgetting things, but loss of ability to recognize people or events, confusion in thinking, loss of cognitive functions, and hallucinations, among others.

To date, while I think some of my thinking processes have slowed, I've not exhibited any signs of dementia. But it tends to manifest itself in the later stages of PD, so I'm by no means out of the woods. Of the symptoms, this is probably the one I fear the most, not just for me, but for my wife who would be taking care of me.

So far, so good. Still a lot of this journey left to travel, though. All in God's hands.


Swallowing


Difficulty swallowing correctly is a fairly common PD symptom. Not so much in being able to swallow, but being able to swallow without getting liquid into your lungs. The flap that should cover the windpipe when you swallow doesn't work as expected.

One common result of this in advanced cases is the risk of pneumonia, and with it, possible death.

Normally I don't experience this. The only exception is when swallowing pills. It is common at least once when taking my supplements to get water down my windpipe. I've yet to have any problem with normal drinking, but it is likely a problem I'll deal with in the future.


Sleep Disruption


Many PD patients experience problems with sleeping. Common is the presence of tremors and dystonia pain makes falling asleep hard. Once asleep, those tend to disappear. It is the getting to sleep that can be a problem.

Another common sleep problem is the need to frequently go to the bathroom. Many PD patients find themselves waking up in the middle of the night frequently due to this. Then if symptoms make falling back asleep hard, it is a double whammy.

Likewise, some experience the opposite. Due to lack of energy some feel a need to sleep more than usual, leaving little time for productive task completion.

There are also studies showing that PD can negatively affect REM sleep, making one feel less rested after a night of sleep.

To date, I've rarely had trouble getting to sleep and getting enough. I've always been a good sleeper. So to date, I've escaped this symptom.


Weak Muscles



Frequently, PD tends to weaken the affected muscles. As the disease progresses, it gets worse.

I've noticed this to a degree. I find opening packages or unscrewing lids from jars to be much harder than it has been in the past. Scissors have become my best friend in that regard. I can still lift a decent amount of weight, but I've noticed in my left arm that ability has been reduced.

I've been doing more resistance exercises of late to help with that issue.


Balance Issues


Another critical problem among many PD patients is balance issues. As noted above, this is especially critical in stage 3 of the disease, when falling becomes more of a threat. At each visit, my neurologist ask if I've had any incidents of falling in the past few months. As I mentioned at the beginning, falling is one of the main ways PD patients experience injury, life-threatening complications, or even death.

I can tell my balance has been affected. I'm a little more unsteady on my feet than I used to be. To date, though, I've not had any real falls due to this. The only one that could be attributed to it, and it was more a matter of getting my feet tangled in a vacuum cleaner hose, was a slow, controlled fall, in part due to the table I tried to steady myself with not staying put, but slowly scooting out.

During Yoga and Pilates, we do some balance exercises. I currently find these difficult not to end up putting my foot down to keep from falling. I'm doing Tai Chi which is known for helping with this problem. Looks like when I get to phase 3, it will be an issue, unless my work now can head it off or reduce it. We'll see.

Summary


As I said, the above list isn't exhaustive. Each person may have other symptoms not listed. I may have forgotten even some of my own symptoms to mention. However, the above list should help to give you a clearer picture of what many PD patients face with this disease. It isn't just tremors that are the issue, but a whole range of issues.

My treatment plan involves exercise (currently Zumba, Pilates, Yoga, Tia Chi, lifting weights, and swimming), good nutrition, and a combination of supplements and prescribed medications. My symptoms would be much worse without them.

Feel free to subscribe to this blog (top right) using either RSS feed or email, if you wish to follow my journey with this disease. Thanks for reading.

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.

Saturday, February 21, 2015

Tauroursodeoxycholic Acid - Round 2: Final Post

Sorry for the delay on this final post on "Round 2" of taking TUCDA. There are multiple reasons for the delay. Before I get into that, let me give you a quick update on my TUCDA experience since the last post.

No need for a detailed account. The short and the long of it is that not much changed since my last post. The improvements I experienced in the first 4.5 days have been sustained, but not significantly improved on. So much for the placebo effect!

So what I've learned through these tests is the following:

1. The improvements I experienced the first time didn't come from Azilect. Upon stopping TUDCA for two weeks, those improvements disappeared with no change in my Azilect dosage.

2. With around 99% certainty, I can say those first improvements did come from taking the TUDCA. Not only because stopping the consumption of it caused those improvements to disappear, but because upon resuming it those same symptom improvements returned, even if not to the level of benefit from the first time.

3. Consequently, I've decided for the current time to continue taking TUCDA. In ordering more, the supplier I was using had run out (probably due to more people using it now) and I had to use a more expensive supplier. Rats.

4. Since I'm taking toenail fungus medication, which can hurt the liver, and TUDCA is used primarily for liver support, I was interested in a blood test check on how my liver was doing through all this, last week. Everything came out normal. Been on the toenail fungus med since Dec 1st.

5. To help pay for TUCDA, which can amount to $80-$100 a month, I'm reevaluating the list of supplements I'm taking to see where I can cut back and/or find more economical means. I've found a cheaper but still good multivitamin to take as well.

As to why TUCDA hasn't helped as much on this second round as the first, it appears the main reason is because in the two weeks off TUDCA, my symptoms, primarily my left arm/hand stiffness which affects several other areas--typing, cogwheel motion, and tremors--, not only returned to pre-TUDCA state, but a pre-Azilect state.

That most likely meant either my disease symptoms had progressed that much since taking TUDCA and/or during the first round of taking TUDCA, the Azilect began to lose some of its effectiveness. The second round was able to halt that slide and improve it, but not to the levels I had before. If due to the latter cause, I'd be in this position anyway because TUDCA wouldn't stop Azilect from losing its effectiveness, I don't believe. If the former, though my symptoms have never progressed that fast before, one could make the case that my experiment cost me some symptom benefits.

If it is due to Azilect losing its effectiveness, I may be able to find that out in about 3-5 weeks. Wednesday, I went from taking a 0.5 mg Azilect dose to 1 mg dose per day. Assuming Azilect increase dosage shows symptom benefits around 4-5 weeks from taking it, like the last time, I may find myself back to the improvement levels the first time taking TUDCA. Time will tell, but it also may prove inconclusive if not much happens.

So where do my symptoms stand now? In the last 2-3 weeks, I've noticed two main things. One, in the morning my arm stiffness seems to be its least, and progressively gets worse as the day goes. That means my best typing time is in the mornings when I'm fresh.

Two, for the first time, I've had distinct off times between doses of Sinemet, the primary medication for keeping PD symptoms in check. Usually after a period of time, it becomes less effective. I've been on this dose since January of 2014. I usually take the pills 6 hours apart. By the time I take my next dose, I can feel it in my left arm and tremors. This is despite the Azilect which is supposed to help smooth out the off times.

Which leads me to a third possible explanation for my apparent progression. It could also be due to Sinemet not doing as good a job as before. Why it progressed during those two weeks so much, I don't know. But PD progression is an unpredictable animal too.

In addition, the tremors in my right hand, which have been minor, have become more pronounced and consistent. Still, I don't experience a lot of stiffness in my right hand that slows my ability to type with it like the left. Blessings I can count, though I doubt that will last.

But some evenings I can barely use my left hand at all, and have to type one-handed. Slow going. Some things like this post can take hours to compose, though tonight I seem to be going at a fairly decent pace . . . so far.

One other possible reason I gave for the loss of symptom improvement levels was my diet change: came off a week of no sugar including fruit to adding fruit and grains back into my diet. My theory, though I felt a long shot, was that adding sugar back in was a shock to my system that had shut down sugar processing. Insulin thought it was on a holiday, essentially.

Though some responses I got thought the diet change may have played a bigger role than I thought, I don't think so. One, because it should have been a temporary effect. Once my body adjusted to the sugar level again, I should have come back to a normal level. Two, the diet I went to was still as healthy and "normal' as it has ever been. Indeed, my diet and sugar intake during the first TUCDA test was worse than it was during the second. So I highly doubt it was a factor. Not unless you can convince me that grass fed meat, fruit, vegetables, and other non-processed foods are a problem with PD.

I have more to say (I've started an exercise program), but I think it will be better to put that in a separate post so this one doesn't get too unfocused. I should have more time Saturday for that.

Bottom line from all my test: TUCDA, in my case, did give me symptom benefits. Add to that the potential it has to slow the disease down, as the human, clinical trial of it in ALS would indicate, the only thing holding anyone back from trying it for themselves is asking your doctor and finding out it could be a problem for them. There are some conditions this could complicate so one is taking a risk not asking their doctor if it is safe, but most people can tolerate it well even at higher doses than what I've taken based on studies.

As I've noted before, I'm not advocating any one person use it, nor am I prescribing it for anyone. Take it if you decide it is right for you, under the guidance of your doctor who is qualified to tell you whether you have any issues this could negatively affect.

All I've done in these last few posts is document my experience in using it and reported what happened. It is not a cure, but it obviously has some benefits for PD patients that are worth investigating and verifying whether or not it can be used for that purpose on a wider basis and prescribed by doctors.

Thanks for your patience and following me on this journey. I'll attempt to tell you about my adventures this past week soon, hopefully Saturday or Sunday.

Until then, be well.

Monday, February 9, 2015

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.

Monday, February 2, 2015

Week 2: Off Tauroursodeoxycholic Acid

As promised, this is my update on changes on my symptom improvements upon taking TUDCA since going off of it. We'll head straight to my list and update for this week.

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

Week 2 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
Week 2 off TUDCA: 4

With some effort, meaning at first I would have trouble hitting those low notes, I could do it, but even then they were weak and spotty, going in and out. I'm practically back to where I was pre-TUDCA.


Cogwheel motion

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

Left hand is jerky motions most of the time, slower, difficulty manipulating objects with my left hand. Still unable for my left hand to match my right hand's speed, smoothness, or coverage when scrubbing my scalp when shampooing. Feels it is at the pre-TUDCA level.

Typing speed and ease

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

Most of the time, like right now, typing is slow, and frequent backspacing to correct letters my left hand decides to throw in randomly or out of order. On occasion I'll have a spurt of easier typing, usually in the mornings, but those have become the exception.

I should note that for a period, around week 4 and 5 of taking Azilect, my writing speed increased when its benefits kicked in. By the time I started taking TUDCA, it had sunk back some where I recorded it above.

Dystonia

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

The downward trend continued back to where I started pre-TUDCA. Especially the last 3 days, my left arm feels stiff and has some pain, only offset when the Sinemet is kicking in. When walking, my left arm doesn't move, like it is taped to my side. My left leg is causing me to walk like I have a limp at times. Today the dystonia has been more so, forcing me to massage and stretch my arm more. So it is becoming easier to tell when I have off times, when the Sinemet wears off.

Tremors in left hand

Pre-Azilect: 3
Post-Azilect: 5
With TUDCA: 9
Week 1 off TUDCA: 7
Week 2 off TUDCA: 5

The times when it is not shaking are few. I've noticed my right hand shaking more as well. I"m almost tempted to rank this one a 4, as it seems worse than it was once the Azilect symptom improvements kicked in.

Toe-curling

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

As mentioned last week, this one is harder to gauge between the dyskinesia and the toenail fungus. I believe I did notice less pain this week, I suspect because the toenail fungus medication has made enough progress to do so. But I can still feel my toes wanting to curl when I'm on my feet for any length of time.

Conclusions


I believe it is clear that Azilect was not the source of the improvements I experienced upon taking TUDCA. The only way that could be true is if my PD progressed enough since stopping the TUDCA to coincidentally wipe out those improvements, which is highly unlikely. The next test should remove even that possibility. I believe in my case, this proves the symptom improvements after taking TUDCA were not from a second burst of Azilect improvements that coincidentally fell at the same time.

The only other plausible cause of symptom improvements upon taking TUDCA is the placebo effect. I feel this is highly doubtful for the following reasons:

  1. No other non-prescription medication has improved my symptoms like that, even though I expected that some of them would do something.
  2. A symptom improved, hitting low notes, that no other medication including Sinemet, Azilect, or the dopamine-agonist I took for a few months, ever touched. I wasn't even expecting it to happen, failing to even mention it in the original list of symptoms I was going to watch upon starting this. It is unlikely the placebo effect would have caused that improvement.

That said, I can't totally rule out the placebo effect. Unlike any other supplement I've taken, this is the first time I decided to give a day-by-day account of what it did. While I did it because some others reported improvements in the first few days of taking UDCA and wanted to document whether or not the same thing happened to me or not, I was expecting to show that not much would change. But it could be the exercise ended up providing the trigger for the placebo effect to make these improvements.

In the end, there is no way for me to totally rule out the placebo effect. That would require a double-blind, placebo-controlled clinical trial. Obviously that is impossible for me to do by myself. That said, I still believe that these levels of benefits would be near impossible for the placebo effect to produce, and for the reasons stated above, highly unlikely in my case. Even if they did come from the placebo effect, for me they are definitive improvements I experienced when taking TUDCA. The placebo effect would have to be strong with me.

The final conclusion of this test is that TUCDA did cause the improvements in my PD symptoms that I experienced upon taking it.

To further verify that, I'm now moving to test #3 of this experiment. I've ordered another bottle of TUDCA, which should arrive Wednesday. Unlike last time, I'll be starting with a daily dose of 1250 mg--the optimum amount noted by a member of the PD forum I'm on--instead of the 1000 mg dose I was taking. If symptom improvements reoccur, then I don't think there can be any question as to what caused them.

By next Sunday night, I should have enough time on them to report whether or not it has improved my symptoms again, assuming any improvements follow the same time-table as last time. I'll also be seeing my doctor this month, and I'll get his input on my experience thus far.

So until next time, have a great week!

Monday, January 26, 2015

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!

Thursday, January 8, 2015

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.

Wednesday, January 7, 2015

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.