Medication Experimentation - Part Two

I continued my research. Before I started taking the Sinemet again, I ran across an article claiming that magnesium--ideally magnesium chloride--would reverse the progression of PD symptoms. A scientific basis was proposed--another theory. But again, it wouldn't be costly to give it a try, at least for a month, since it was safe to do so. So found and ordered some, 520 mg pills, and started taking them 10/1/13.

I took them until 12/10/13, when the bottle ran out. I didn't feel they helped symptoms. That's not to say they weren't helping in other ways, but I had no way to tell that. The claim was it would reduce symptoms. It didn't.

More research pulled up an article with a lot of suggestions. Evaluating them, I ordered and started taking the following supplements on 10/25/13:

• Ginkgo Biloba: helps blood flow to and health of the brain
• Tyrosine: used in the production of dopamine
• Acetylene-Cystine: supposed to help offset toxic chemicals/processes in the brain.

Two days later I stopped taking Tyrosine because I discovered it interfered with the effectiveness of Sinemet, just like meat protean does. If I had been smart, I would have taken it at some point between does so it wouldn't interfere. But at the time I just stopped to see what the rest did.

So from 10/15/13 through November, I was taking in total: Sinemet, Ginkgo, Acetylene-Cysteine, and Magnesium Chloride. Through that time, I couldn't tell that any of it helped my symptoms other than the Sinemet, and that only partially.

My first visit with the neurologist happened at the end of November. That's when she confirmed I had PD and had a CAT scan done to check for strokes or other brain problems that could cause those symptoms. The CAT scan showed I was "normal." At least someone thinks I am.

The neurologist wanted me to try an alternate medication to Sinemet. The brand name she prescribed was Ropinirole. It is a dopamine-agonist. In short, instead of adding more dopamine into my system, it stimulates the dopamine-producing neurons to produce and receive dopamine.

So 12/1/13 I stopped taking Sinemet and 12/2/13 was my first day on Ropinirole. Unlike the Sinemet, I had more side-effects from it. The first week, the most noticeable side effect was dizziness. But it was a very specific action that caused it. When I'm in bed, and I turned to my left side, the whole room would spin and I would feel like I wanted to throw up. As I understand it, it has to something to do with lowering your blood pressure, which is why you work up to a full dose. She had me go at least one week on a half-dose before taking the full dose. But I didn't experience dizziness at any other time, and the room-spinning passed before one week was out.

The only other side-effect I experienced was drowsiness. I could stay awake, and I didn't have much trouble driving, but there were times I could tell my reflexes were dulled. Waking up in the mornings was harder. I felt groggier waking up for longer than usual. Overall, during the day, I simply felt slightly tired all the time. But my body adjusted and I got used to the drowsy feeling so that I didn't notice it much.

The neurologist said to stay on the half-dose if it did the job. By the end of one week, I could tell it was helping reduce symptoms, but not as much as the Sinemet did. So I went up to the full dose the following week. After a few days on it, it felt like it reduced symptoms as much as the Sinemet. So I ended up on 12/9/13 taking .5 mg three times a day. I've been taking it up through yesterday. More info on that later, but today is my first day off Ropinirole.

During this time, I stopped taking the magnesium chloride and the acetylene-cysteine when they ran out. I ordered more of the Ginkgo since that is well established to help brain functions, and I figured I could use all the help I could get. So by Christmas, I was taking Ropinirole and Ginkgo, along with my multivitamin and fish oil I'd been taking all along, even before getting PD, along with the coconut oil in my morning oatmeal.

My next neurology appointment was in January 2014. Upon further evaluation, she decided to add Sinemet back into my medicine alongside the Ropinirole. So on 1/14/14, I resumed taking the original dose of Sinemet. To date, that has gained me the biggest relief from symptoms to date. Even at church, while I would shake some and feel rigidity in my left arm and fingers, it was minimal compared to what it was before. Much more manageable.

That above cocktail of medicine and supplements is what I've been on since 1/14/14 until yesterday. The refills ran out on my Ropinirole. I could have called the doctor and got more, but the additions I'm making this week based on research caused me to decide to go off it, and see if these other changes could compensate.

They may, however, have a slow build-up effect. In that regard, this isn't the best time to stop taking it. Next week is Holy Week, and I'll be chanting extra services that are special and long. Which means added stress. If my new plan doesn't kick in right away, or at all, next week could be difficult.

What is my new plan? Two pronged. First, I'm going on a special diet that is supposed to benefit the mitochondria in the brain cells. Mitochondria manage energy production in cells. So the diet attempts to have you eat foods that benefit them, and avoid foods that hurt/hinder them.

The core of the diet is to avoid processed foods, sweeteners, breads, dairy, and unsprouted grains and beans, and instead eat three cups of green vegetables, 3 cups of sulfur vegetables (cabbage family, onions, and the like), and three cups of "colors," vegetables and fruits with color like berries, red cabbage, etc. Plus some protein from free-range, grass-fed, wild-caught chicken, beef, and fish respectively. Since we are fasting from meat during Lent, but shellfish is allowed, most of our "meat" protein comes from shrimp, and occasionally scallops or clams. Also supposed to have one serving of organ meats like liver, heart, brain, tongue, etc. If you're interested about this diet, do an internet search on Dr. Terry Wahl.

We started this diet this past Monday, 4/7/14. There are reports from people, one we know, that this diet--originally developed for autoimmune diseases like MS--has reduced symptoms significantly. One lady we know who has PD reports before the diet she couldn't safely drive. After a few months, she now can again. But this isn't something I can expect will help me out this coming week. In two to four months, I can probably give you an update on how it is helping, or not as the case may be. In a year, I should know for sure if this is something that can help. Even if it doesn't, it will at least have me eating a lot healthier.

The second addition is a new list of supplements that have been shown to help brain functions. From that info, starting 4/10/14, I've added the following to what I'm already taking:

• 1 g. Tyrosine: taken in the middle of the night to keep from interfering with the Sinemet.
• 400 mg. Vit B6: a key vitiamine needed by the brain for healthy dopamine production, also taken middle of the night with the tyrosine, for the same reasons.
• 1040 mg. of Magnesium Chloride, again: helps with proper functioning of brain neurons.
• 2 g. Vit C: free-radical fighter, to deal with radicals hurting the brain.
• 1000 mg. Grape Seed extract: another free-radical fighter. It was either this or Vit E, and Dr. Furman warns against getting too much E, as it can negatively affect health.

These too might take a while to have an effect. But I'm hoping that will happen in a week's time, by which I'll be going into my heaviest chanting part of the week. If not, I may be on the shaky side. But I hope to find out whether this is helping within a month's time.

One other change I started two and a half weeks ago. I read about some early testing done on fruit flies and mice that the "artificial" sweetener mannital has been shown to reduce PD symptoms. It is a long ways from becoming an approved treatment, but I figured why not use it as a sweetener? But it isn't sold retail much. It is mostly used to coat candies to give it that cool feeling in the mouth. And it is also prescribed for children as a laxative. But I read it could be taken less than 20 g. a day safely. Whether that would be enough to help PD, who knows. But it could build up over time, can't hurt as long as I don't take too much a day, and helps with the PD constipation anyway. Win-win in my book.

So as of 3/28/14, I started taking 4 teaspoon in my oatmeal each morning, providing around 16 g. It has half the sweetness of sugar, so you have to use twice as much. My only problem may be if one of these solutions does work, I may not be so sure which it is. At any rate, my next neuro appointment is in July. By then I should be able to tell if any of it is helping, and if not, have her prescribe the Ropinirole again.

Starting today, however, the only prescription I'm on is Sinemet. The nice thing will be more alertness. But at least in the short term, more shakiness, rigidity, and pain. It will be a blessing if these supplements do the job.

That pretty much catches us up on my medication history to date. I do want to go into other types of treatment in my next post. But it will likely be sometime after Easter before I'll do it. With taxes and Holy Week, I"ll have my plate full for the next few days. Until then...

Medication Experimentation - Part One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2013: Year of Diagnosis

I'll do 2013 in parts, since so much happened that year. These are the events that led to my diagnosis. Next time I'll take a look at what types of remedies and medications I've tried.

Before I get into that, a minor correction to the last post. I had said that by the end of 2012, I didn''t have any tremors yet. My wife remembers that I had minor tremors in my left hand. I can't remember for sure, so I'll take her word for it.

Needless to say, when 2013 started up, I knew something was wrong, and that I needed to go see a doctor. I went to a charity place in town, being unemployed and living off my wife's house cleaning business. Scheduled in February, appointment was either late March or early April.

By the point I went to the doctor, I definitely had minor tremors in my left hand and continual tightness in my left arm. If my left leg was propped up and I did a certain activity, like yawn, it would shake. But since most of the time it was planted on the ground, I rarely noticed any there. The main symptom of my left leg was weakness. I felt some pain if I raised it up, like in the shower to wash it, or getting in the car.

The doctor asked several questions and did some movement/strength tests. He could see I had tremors, but was attempting to figure out whether it was Essential Tremors or Parkinson's Disease, or other possible causes. Essential Tremors are the #1 neurological disease in the world, with PD following in second place. The main difference between the two is usually ET happens only when using the hand to actively do something--most noticeable in writing one's signature--whereas PD has tremors while the hand is at rest. Also, PD tremors go away when the patient is asleep, while ET does not.

It was then that he said I most likely had PD. He prescribed me a beginning dose of Sinemet, the main drug for treating PD, as a test. If it was PD, I should see a reduction in symptoms if not outright clearing up. If it wasn't PD, the medication would do nothing. If it helped, it would be an indication I did have PD. He also wanted me to go see a neurologist at Scott and White. He gave me a form to fill out that would help financially.

At first I sat on it. I didn't fill the prescription or work on making an appointment with a neurologist. In part because it didn't seem pressing. I had some symptoms but they weren't hard to deal with. The pain was manageable without taking any pain killers. But I knew I needed to go eventually, and planned on doing it all. But I've always got a lot on my plate, so it was easy to put off dealing with it. I hate filling out forms like that. Plus, I didn't expect the financial aid to make a difference. Even paying something like 30% for a CAT scan or MRI would be as out of reach financially for us as paying 100%. We weren't making a ton of money, but neither were we dirt poor. So I fully expected to not qualify for financial assistance and if we did, it still wouldn't allow me to go see a neurologist.

But I had people encouraging me to fill it out and send it in. The doctor's office had sent in to Scott and White that I would be making an appointment, so they kept calling wanting to set that up. But I didn't want to do that unless I could pay for it. It wasn't until July that I finally dug up the needed paper work, filled out the form, and sent it in.

By then, my tremors had grown more noticeable in my left hand. As noted before, stress brings out PD symptoms. For me, those tended to be driving, chanting/reading at church, sex, and for some reason, yawning.

As a matter of fact, my first PD accident was due to yawning. I was holding a glass of water in my left hand when a yawn hit. My left hand shook enough to spill water out of it and onto the floor.

Church is particularly noticeable. I've been ordained as a reader in my church, which means I assist the priest in our Antiochian Orthodox parish in conducting services. In my case, I primarily do a lot of chanting/singing using Byzantine "tones" and the reading of liturgical text, Old Testament readings, and Epistle readings. My usual routine is to do Vespers on Saturday night, about an hour of chanting and readings. Then on Sunday morning another little over an hour for Orthros/Matins, followed by singing in the choir for the Divine Liturgy, about an hour and a half.

For those not familiar, Orthodox sing most of their liturgies. So on Sunday mornings, I usually spend a good 2.75 hours chanting, reading, and singing choir songs and responses.

By July, my tremors had grown worse. In some Vesper services, there are Old Testament readings. For these I usually had the readings printed out on a piece of paper which I would hold, stand in front of the congregation, and read. My paper shaking around as I read it became very obvious. Our choir director, who usually stood close by me, had noticed my tremors while chanting.

Two other symptoms I noticed during this time: constipation and my voice. It is common for PD patients to experience an increase of constipation. Most of my life, it was rarely a problem. Suddenly, I was sitting on the toilet for long periods of time. I first treated it with fiber laxatives. Initially it helped, but seemed to lose its effectiveness over time. So then I went for prunes. I usually eat a few every night and usually that helps.

Over time I noticed my throat tightening. Also, I began to have trouble hitting low notes like I used to. I've sung bass in the choir since I was a teen, though I'm a baritone. Notes I'd been able to hit low on the scale with consistency started breaking up, lower volume, or not coming out at all.

It is an indication that like Linda Ronstadt, my signing days may be numbered. To date, I can still sing, but my bottom range has been reduced, and I tend to sing more melody or tenor.

But it isn't just singing, but the volume of my voice. A common symptom is getting a soft voice. I started having more people say, "What?" in conversations than ever before. If I'm not careful, I end up mumbling. That usually doesn't affect my reading in church services, because I'm consciously trying to project.

So late July/early August, I mailed the paperwork into Scott and White. Then decided it was about time to give the Sinemet test a go. As I detailed last time, PD symptoms are brought on by the reduction of dopamine in the brain that provide for smooth movement. Sinemet adds more dopamine to the brain to replace what is missing.

I received and started taking Sinemet in early September. I took it for two weeks. It seemed to help, but I wasn't sure. So I stopped taking it for another two weeks. By the end of that first week, my tremors and tightness in my arms dramatically increased, despite some other things I was trying. I concluded that it definitely reduced the symptoms, though it didn't totally get rid of them as some in the support group reported. To date, nothing has returned me to feeling normal again.

So on 9/24, I started taking Sinemet again, because the pain in my left arm had become much sharper, and trying to type with my left hand was near impossible due to the cramping.

A letter arrived from Scott and White that blew my socks off. They had granted financial assistance, and I would only be required to pay 3% for services. I couldn't believe it. So I scheduled a visit to a neurologist, which happened at the end of November. She watched me walk down the hall, did some of the same motor coordination test my doctor did, then said I did have PD. She could see it in my face. They did a CAT scan to rule out a stroke or blood clot. I came out clean on that one.

She wanted me to try a different drug, a dopamine agonist, to save the Sinemet for later if possible. I'll go into more detail on it next time. I left the hospital with a confirming diagnosis. I officially had Parkinson's Disease.

Next time I'll go through the medications and remedies I've tried.