Friday, December 5, 2014

Azilect Results

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, November 12, 2014

New Doc Update

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

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

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

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

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

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

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

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

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

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

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

Until I have more info . . . bye.

Tuesday, October 21, 2014

Medication Change Results

Last time I indicated that my doctor and I believed the increase dosage of Sinemet was causing some side effects. So almost 2 weeks ago, I went back to taking only one pill three times a day. Following are the results.

On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.

On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.

The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.

So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.

I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.

That's the scoop for the time being.

Saturday, October 11, 2014

Medication change

As I last reported back in September 10th, my neurologist increased my Sinemet dose to double what I was taking, since my symptoms had gradually increased. She also seemed a bit puzzled that my current dosage wasn't helping any more than it was. But since it was helping, she figured we could up the dose and see if that got rid of the symptoms better.

It has been just a little over a month, and here is how it has worked.

On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.

However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication.  Those symptoms include:

1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.

2. My left leg started feeling antsy and weak. I really noticed this at church.

For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.

The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.

This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.

3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.

Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.

One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.

When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.

I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).

That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.

So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.

The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.

I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.

Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.

Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.

Wednesday, September 10, 2014

Doctor Visit Results

Quick update after seeing my neurologist Monday morning.

One, she updated my meds. Didn't like the one medication I showed her. She said it wasn't in her "go to medications" because she felt the beneficial affect it could have didn't tend to deliver enough "punch" in exchange for the potential negative side effects. I didn't argue with her, though I'd heard/read some good things about it. Most of it anecdotal and not proven, though. I've also read a lot of doctors aren't read up on it too, and this may have been the case as she seemed to think it would require dietary restrictions when everything I've read from reputable sources say at normal doses, it doesn't require it because it inhibits MAO-B, not MAO-A which does have those restrictions. She didn't seem to be aware of that difference.

At any rate, our new med plan is my Sinemet has been doubled. Instead of taking one pill 3 times a day, I'll take two 3 times a day. Then if in 2 months I still feel I need more help, I can contact her and she re-prescribe the Ropinerole that was helping earlier this year.

Into day 2 of taking the double dose, I can tell it is helping. Less stiffness in my left arm. Still not normal, but I'll give it a week or two to build up before I decide whether I need more help.

But I got some good news! Currently I have an hour and a half drive each way to go see this neurologist. She said she recalled seeing an email about a new neurologist in the Marble Falls facility they are building. She checked, got his name, and I said I'd like to try him out. So I ended up with an appointment to see him on Nov. 10th.

This will really be helpful, since he'll only be about 10 minutes away. Saves gas money and taking up most of a day. So I'm happy about that and hope this new neurologist will work out.

That's it for now. Thanks for your prayers and support.

Saturday, September 6, 2014

I'm off to see the doctor...

Will be going to see the neurologist Monday morning. Paperwork was submitted, though I discovered I could just bring it with me.

Good thing too. Lately I've noticed more stiffness in my left arm that my meds aren't getting rid of. More pain as a result, sometimes worse than other times. Hopefully the doc can update my medications.

One thing I'm going to talk about is a medication I've heard some good things about: Selegiline. It may be able to make my Sinemet dosage more effective so we don't have to raise it yet. It works by blocking the chemical process that breaks down dopamine in the body, so what is floating around in there lasts longer. We'll see if the doctor agrees with using it.

Recent weeks I've noticed more stiffness in my legs, swallowing pills sometimes doesn't work right. Noticed more signs of my right hand being affected. Lately I'm double-clicking the mouse without realizing it. Same thing that happened with my left hand in 2011 about this time: I kept double pressing letters on the keyboard. I thought it was the keyboard acting up, but it was PD. If my right hand follows the same time frame, I should notice more difficulty typing with it by November.

The most noticeable effect on my right hand comes in brushing my teeth. It is harder to do it smoothly, and at times my hand runs away with it, going fast like I'm barely maintaining control. Surprised I've not jabbed my jaw with the thing yet.

Also seems like I've had more episodes of mental dullness lately, when it almost feels like I'm only able to focus on one thing and unable to process sensory data as readily.

So hope to talk about all that with the doctor, and hopefully come away with some help.

One good thing. So far, it doesn't seem like my voice has deteriorated any more than it has before. Lower notes still aren't as solid, but most of my range is still there. As long as I can stay calm, can still sing. Directing is a bigger issue. A few Sundays ago, choir director was gone. I'm the backup. Directing with my right hand left my left arm free. As my stress went up, my left arm started flapping against my side like a fish out of water. Had to get the wife to hold onto it and rub it so I could function.

I'll try and come back for an after doctor update when I can.

Tuesday, July 22, 2014

Note on Appointment

I mentioned last time that I had canceled my appointment with my neurologist on 7/1 due to not being ready financially, and would need to see about extending my prescription (which ran out yesterday).

Just so no one is worrying, I did reschedule for 9/8 and they renewed my Sinemet prescription for another 3 months. Picked it up yesterday, and it is waiting for me to partake.

So I'm good for the time being. I just need to get the paperwork submitted so I'm ready by Sept.

That's it. Didn't want to leave folks hanging on what happened with that. More later.

Thursday, July 17, 2014

Catching Up

I haven't posted in a while, so figured I better get to it now that I'm officially 54 after yesterday's birthday bash.

First . . .

Update on my supplements


Around April 11th, I had gone off the dopamine-agonist medication, leaving me only on Siniment, the standard treatment. But I had added a list of supplements I started taking, along with some diet changes, hoping it would take up the slack, eventually.

Well, three months later, none of them have seemed to help. Noticeably, anyway. I did add a new supplement that seems to be having some effect, though it is so light right now, it is hard to say for sure. More on that in a minute.

I've decided, after some more research, the following:

  • Tyrosine - A amino acid your body doesn't make which is necessary for the creation of dopamine. However, one generally gets an adequate supply of this from eating meat. I may keep some on hand to use during fasting periods when we don't eat meat. Otherwise, I'm better off getting this from natural food sources than supplements.
  • Vitamin B6 - Another ingredient needed in the creation of dopamine. However, it is abundant in most all vegetables and fruit. A diet rich in those, like what I'm on, doesn't need any additional B6 beyond what my multivitamin supplies. I've got a full bottle still, so I'll take them till it runs out, but I'm likely flushing most of it down the toilet by taking them. Your body only uses so much a day. The rest passes through.
  • Magnesium Chloride - Supposed to help the neurological system function better. This is the second time I've tried them. I've not noticed any difference either time. Which probably means my body isn't short on this mineral.  Really not needed.
  • Vitamin C - Taken to help combat free-radicals in the body and brain, of which PD brains seem to have a problem with. The idea is it helps reduce damage to brain cells caused by free-radicals. Though there is a good chance of lot of this is going down the toilet as well, especially combined with my multivitamin, combating free-radicals is a good thing. Successfully doing so wouldn't show up in symptoms reduction. So I'll probably keep taking this one. Plus, it has the added benefit that it combats sickness, which may be why I didn't get the last round of stomach sickness that went around in our family.
  • Grape seed extract - like Vitamin C, this fights free-radicals. So I'll be keeping this one too.

One I added since that list is cucurium. It is an extract from the spice cumin, of the elements of cumin that reduce inflammation. One theory is that PD is caused by inflammation in the brain, destroying brain cells. I took it for two full months with no notable effect. So when the second bottle ran out, I didn't reorder.

One that shows promise is Agmatine Sulfate. It is derived from L-Arginine, an amino-acid often used in body building. L-Arginine has shown promise in helping PD, but can't get past the brain barrier. Agmatine can. And studies have shown it has helped PD-like symptoms in rats, both in motor function, but more importantly, mental functioning. It apparently has a protective effect on brain cells and protein production, a problem in PD brains.

I've been taking it for about a month and a half. While I haven't seen body-wide improvements, it has seemed to help with mental functions. At least is seems I don't feel as mentally out of it as much as I used to. I should be able to tell more definitively whether it is helping or not in a couple of months or so, but currently it appears promising.

I should also mention the sweetener Manitol that I talked about previously. Some studies had shown it improved PD symptoms in fruit flies. Well, I guess I'm not a fruit fly. After three months using it, no change in symptoms. Probably due to the fact I couldn't take enough. You remember the laxative effect I said it had? I was putting 4 teaspoons in my oatmeal every morning. The effect seemed to get worse each day, but it was producing some intestinal distress. I finally dropped it to 2 teaspoons, which was more bearable, but meant I couldn't take enough to help, if it could.

Manitol is the primary sweetener used in gummy bears. Which is why on Amazon, there are some pretty funny reviews by people who ate half a big bag of them. Yes, gummy bears are a laxative.

So once some of these run out, what I'll be left with is:

  • Sinimet
  • Multivitamin
  • Fish oil
  • Coconut oil
  • Ginkgo Biola
  • Vitamin C
  • Grape seed extract
  • Agmatine Sulfate

Still a lot of pills to take each day. Ug.

Symptoms Update


I've not noticed much changes in the last three months, but changes can be so slow you don't notice them. What I have noticed is the following.

My left leg is not moving as efficiently. When I'm standing at a sink, I'll notice my toes on both feet trying to curl under. My left leg feels more draggy than ever. I feel like my gait has changed because of it, though so far I've had no problems getting around. But more than likely I'll experience freezing at some point--suddenly being unable to move your legs, so its like you are frozen and you have to get unstuck to get moving again.

Slowness of movement, known as Bradykinesia. Sometimes I feel like I'm in slow motion, especially if I'm trying to do something with my left hand. I've noticed that happening a lot more in the past three months.

Otherwise, I'm still experiencing the same symptoms I did before. My best time so far is when I was taking the dopamine-agonist and Sinimet. I almost think putting up with the drowsy feeling of the agonist might be worth it.

But it may be a while before I find out. I was supposed to have gone to see the neurologist July 1st, but had to cancel because I didn't have my charity filing done yet, so I wouldn't have been able to pay for it. Now I have to reschedule, and should be able to submit the paperwork soon, but means it might be another three months before I can get in.

Hopefully the doctor will extend my Sinimet until then, but if not, I can always use L-Dopa to get the same effect, just not as efficiently. But I'm ordering some as a backup.

Exercise


One last piece of the puzzle is exercise. It is recommended. But it is the one area I've slacked off in, sort of.

I say sort of because even though I'm not working out, I do help my wife clean houses nearly everyday. That means I'm getting in a lot of walking and light physical labor. So that's got to be good, as opposed to my previous job of sitting at a desk all day.

We used to swim at the gym, which was good exercise, but we had to give it up when funds dropped too low and we could no longer afford it. We're hoping to be able to resume that in the future.

I also bought a Tai Chi DVD, as it is recommended as good exercise for PD in the way of balance. But we've never really done it. Finding time seems to be a problem. Usually by the time we finish working, get home, eat, it is pretty late. Like tonight we arrived home from cleaning an office around 9:20 pm.

So maybe cleaning houses will have to do for my exercise for now.

That should pretty much catch you up on where I'm currently at. Though I could go into some things I've discovered, but I'll leave that for another post when I get back here.

Monday, May 5, 2014

Update Time

Well, I've been busy! Since Holy Week, have been working with my wife, Lenita, cleaning houses. By the time I do that, take care of chores like bookkeeping for her business, fixing and eating dinner (sometimes my son cooks), catch up on emails, blogs, and other sites, there seems to be little time left for writing.

So I've had a hard time getting back to this blog, even though I have so much to say. So let's dig in.

Holy Week


I left folks with a bit of a cliff-hanger, in that I had just stopped a medication, started taking a new set of supplements, and getting used to a new diet, right before Holy Week.

Holy Week, for those not in the know, is a week-long chant-fest. If you did the full slate of services, there would be two services a day from Monday to Thursday, some of them getting close to three hours long, three services on Friday, one on Saturday, and two on Pascha (Easter) itself. A good hunk of those services involve readings and a lot of Byzantine style chanting.

Pascha, btw, is a transliteration of the Greek word into English, which is a Greek transliteration of the Hebrew word for Passover. The early Church referred to this celebration as the "New Passover," when Christ's sacrifice and resurrection enabled us to have death pass over us. It wasn't until much later in Christian history that it became known as Easter, and that only in the Western world. But that's a whole nother subject.

I'm like the head chanter. What that boils down to is a certain level of stress. Normally no big deal. It helps keep you on your toes. But stress tends to bring out the PD symptoms too. So with the medication change, it looked like a potentially difficult week.

As it turned out, it wasn't so bad. Yes, my tremors were a little worse without that medication. It was obviously doing me some good, despite the side-effects. But I was able to chant well and my voice held up as well as in past years. I think in part by some stress reduction. Here's what changed.

This isn't a big change from recent years, but due to travel time, and working with Lenita that week, our first Holy Week service wasn't until Wednesday evening. Then I did Thursday evening, Friday morning and evening, Saturday morning, the Paschal midnight service, and the Sunday afternoon service. So, for one thing, I didn't chant at all fifteen services.

Two, in part because I wasn't there in the first three services, our choir director was fully in the grove by the time I arrived on Wednesday. So she lead more, and did more chanting than I recall in years past, save maybe last year. At any rate, she is fully capable, and so unlike previous years, I didn't have to worry too much about making sure everything was covered. I mostly played backup in case she got temporarily lost, which happened a couple of times.

But the biggest changes that I think helped came in the form of attitude and execution. In part due to the above, I remained fairly laid back. I followed along in the book, but purposefully didn't allow myself to stress out much about any of it. I just trusted it would all come off well. And you know what? It did.

Part of that laid-backness was in how I chanted. Most all previous years, I had used the music. That's great for learning all the special melodies, or when you want to make sure you don't forget how something goes, but it does add a level of stress reading the words and the music at the same time. When some words are stretched out with multiple hyphens, it isn't always easy to pull it all together quick enough. Reading music and trying to perform it as written does add stress.

Well, I've done these Holy Week services for 15 years now. Most of the music I know by heart. Plus, there was only one music book this year, and it wasn't in front of me. So I knew I'd mostly have to do it from memory and just chant from the text. So for the first time, I chanted 99% of the music just using the text instead of the musical scores.

What I discovered is one, I knew pretty much all the melodies. And two, it was much less stressful that way. I think doing that facilitated a much more relaxed attitude and enjoyment of the services.

There is this one piece on Friday night that exemplified this. After a procession around the church building, there is a decently long piece chanted. The music we have is labeled as an "Arabic Masterpiece." It does require a fairly large range to pull off, as it gets very low and high. The first years I attempted it, one church member referred to it as screeching. He was probably pretty close to right on hitting those high notes. But in recent years, starting when Fr. James asked me to do that piece, it actually came out well, and he loved it. So for about the last four or five years, I've been regularly doing it.

This is the first year chanting with my low range effectively on the fritz thanks to PD. So I know I wasn't getting down to those low notes. But using just the text, I could chant it in the same style, but avoid the really low parts. I was able to make most of it sound like it should. But not using the music allowed me to do that, modify it on the fly, and not get as stressed out about doing it.

So because of all that, despite being a little shakier, the services went swimmingly. It was no where near the problem I thought it might be.

As soon as I can, I'll come back and update how the medications are working, and discuss what else I'm doing to hopefully improve my situation. Until then.

Friday, April 11, 2014

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...

Saturday, April 5, 2014

Medication Experimentation - Part One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, April 1, 2014

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.

Saturday, March 29, 2014

2012 Symptoms - Something's Not Quite Right Here

I had two symptoms I had noticed early on that seemed strange, but I didn't think a whole lot about it. It was only in retrospect that I realized they were the first symptoms of PD. I had almost forgotten about them, really, until my right arm started doing the same thing this year. One of them I have a general idea when I first noticed it. The other, I don't recall with any certainty. So I don't know for sure which came first and second.

My hunch is this one came first. My best guess on when I first noticed it was in early 2012, though it might have been at the end of 2011. I do recall noticing it while driving. During that time, my youngest son, Jeremy, was in his first year at the University of Texas in Austin. So we were constantly making trips to Austin, approximately one hour each way, for this, that, and the other thing.

On one of those trips, I noticed my left hand was clamping onto the steering wheel uncomfortably, instead of relaxing as it usually did. It felt like my hand muscles wanted to contract. I had to keep forcing my hand to relax, but as soon as I thought about something else, I'd realize my hand was clamped on it again.

I figured this was a passing thing. But it didn't go away. I did, however, get used to it doing that. What I would later find out is stress brings out PD motor symptoms. Driving is definitely stressful. So the only time I noticed this was when I drove anywhere. I adjusted and moved on. However, as time went on, the uncomfortableness extended to my whole arm. Now, even with medication, I can still feel a tightness that produces pain in my left arm. Without medication, it would feel much worse.

The second symptom that hit me happened while swimming. My wife and I, at the time, were members at a local gym. We'd go there most weeknights to swim and sit in the hot tub together. It was good exercise, and someday we'd like to do that again. But around late spring or early summer of 2012, I started to notice a pain in my left arm when I swung it over the water. Felt like a really sore muscle.

I thought maybe I'd over exerted the muscle, and it would get better. It didn't. Each evening while swimming, it felt as sore as it did the day before. But I only noticed it while swimming. Something about swinging that arm up and over that brought it out.

Despite the longevity of those symptoms, it had yet to dawn on me that anything was seriously wrong. None of it affected my day-to-day activities. I only noticed them when doing those two activities.

In August of 2012, I bought a new laptop to replace my aging one. When I started using it, I noticed I had a tendency to double-enter, E's especially. I suspected it was a cheap keyboard. Well, there is that, but I now know it was also the beginning of PD affecting my typing. Through September, that became worse, and other letters started having the same problem, all left-hand keys.

By October, I began to notice difficulty getting my left hand to type smoothly. I frequently had to hit the backspace button because my hand didn't type the right thing. My fingers were misbehavin'. It began to dawn on me something wasn't right with my left hand. What, I had no idea.

But the realization came in November. Most years, you'll find me writing a novel for National Novel Writing Month in November. For the past years, I would log into a NaNo local chat. We'd have timed speed tests, usually 20 minutes. A bot would start the timer. At the end of the time period, we'd all report our word count to see who had the highest. Usually in a 20 minute period, I could type 4 to 5 hundred words. Others were much faster than me, but occasionally I'd win one if everyone else had an off time.

When I began doing those races in November of 2012, I was consistently hitting in the 200s, the 300s on a good run. I realized whatever was wrong with me, it had cut my typing speed in half. I knew then that something was wrong. But I didn't say anything to my wife or anyone, hoping the symptoms would go away. Still, I finished a 50K+ novel that month (currently published, Virtual Game). In the past I had generally passed the 50K mark around Thanksgiving. I passed that mark in the last three days of the month.

The last indicator was a funeral in December and hanging with my brother and sister-in-law on New Year's Eve. In both instances, they noted that I didn't seem as engaged, and looked "out of it." For the funeral, I figured that was because I had received very little sleep the night before. So naturally I didn't feel much like engaging. Plus, I've never been a big conversationalist anyway.

But later I learned that one of the symptoms of PD is one's face can often get that "I'm checked out" look, even when I'm not. So what seemed normal engagement to me may have looked like I wasn't paying attention to what was going on, even if I did.

That said, I did notice after that having moments when I felt confused about what I was doing. Not merely forgetting what you came into a room to do, but confused about it. Like for a moment, you don't even remember that you had a reason to be there. PD can create dementia. Are these foreshadowing that? Not sure. The likeliest PD patients to get dementia are those who start showing symptoms in their 60s or later. So I should be at a lower risk, but obviously not no risk. Time will tell.

Overall, I believed I was experiencing the beginnings of weakness and fatigue, another PD symptom. It wasn't strong, but there. Sort of a feeling of giving up and going with the flow, but feeling you were giving up something important that would make you happy, so you felt a little like a martyr.  How much of that was PD and how much was lingering wisps of how things used to be before the changes infidelity brought on, I don't know.

The mental confusion doesn't happen as much now. I'll explain in a later post why I think that is.

At this point, I didn't know what was wrong. Tremors hadn't developed yet. I had no clue. Only that something was wrong, and with the advent of a new year, I made plans to see a doctor. I hoped we'd find a remedy for it, and I would get past it. As you know now, that was not to be.

The events for 2013 will be in the next post.

Friday, March 28, 2014

My Perspective

Michael J. Fox, a long time Parkinson's patient, actor, and founder of the Michael J. Fox Foundation that funds research on Parkinson's Disease, notes how important a positive attitude is in dealing with this disease.

So What Is My Attitude?


It has developed in the nearly a year since I heard the words from my doctor's mouth, "There is a high likelihood you have Parkinson's," before he refered me to a neurologist for confirmation. By that point I knew something was wrong with me, but I didn't have a name for it until then. I promptly went home and started researching what I was up against. I knew a little about it, but not much.

I'll explain what it is in a bit, but the main points I learned was in most cases, they don't know what causes it, they don't have a cure for it, it is a progressive disease--which means it will get worse and worse--and all they do is treat the symptoms. I also learned that it is a very individual disease. Different people deal with different symptoms that progress at various rates. IOW, I could be in a wheel chair in 5 years, or playing tennis in 20.

Which leaves one with a lot of uncertainty. For all I know, they could announce a cure this month. Or maybe not in my lifetime. A new treatment could be on the horizon that would more effectively deal with symptoms. Or Sinemet could remain the most effective route for years to come. Who knows?

Being a Christian, I've asked God for healing. However, I'm not in the "if you don't get healed it is because you don't have enough faith" camp. Rather, I'm in the Meshack, Shadrack, and Abendego faith camp. I know God can "save" me from this disease, but even if he doesn't, I'll still love and serve Him. If He doesn't take this "thorn" from me, it is for my benefit, so His grace and glory will be revealed in my weakness.

Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.
(Rom 8:26-27 KJV)

Faith isn't a tool to get what you want. It is a trust in God that what He wants for me is also what I want, even when I wouldn't have chosen that path for myself. Faith is an attitude and orientation on life. For me, it is having a positive attitude that . . .

All things work together for good to them that love God, to them who are the called according to his purpose.
(Rom 8:28 KJV)

A Little About Me


I've been pretty healthy all my life. To date I've never been admitted to a hospital. I've rarely needed to go to a doctor. Until last year, I rarely took many pills save for vitamins and a few other such pills.

Born in 1960 (making me at the point of writing this, nearing 54 years old). Raised as a Southern Baptist PK, my family stopped going to church all together around 1967-68. Returned to church myself in 1976, getting saved in a Nazarene vacation Bible school. I graduated high school in Austin, TX in 1979. Went to what was then called Bethany Nazarene College (now Southern Nazarene University) in 1979 to major in religion. Found myself a wife while there. Married in May of 1982. Graduated college in 1984.

My first child was born in 1985. Then another in 1988. Finally went to seminary in 1989, and attended part time for three years before they raised the rates so high it was impractical for me to continue. Took my first pastorate in 1992. Ordained in 1994, but not before having our third child that same year. I also left to pastor my second church that year.

1996 was a major shift for me and my family. Due to my convictions, I resigned my pastorate and moved back to Austin in order to "convert" to the Orthodox Church. In 2000 we moved to our current house. I supported my family for over 15 years doing bookkeeping while my wife earned extra cleaning houses.

I could list a lot of things that's happened since then, but the following two are key in understanding me. In 2005, I "accidentally" wrote my first novel of 94K words in the month of October. That experience convinced me I wanted to be a writer. I've been working hard at it ever since. Currently have six fantasy/science fiction books published, an anthology of my short stories and flash fiction, and two non-fiction books. That makes a total of 9 books on sale at Amazon and other retailers. You can find out more about that at my author website, http://www.rlcopple.com.

The other major event that has totally changed my life is my wife's affair in 2011. Because of that, we've both made major changes in how we interact with each other and have grown personally through that difficult time. The rebuilding of our marriage and relationship has proven so successful, that I did what any writer would do. I wrote a book about it, with my wife's approval. You can find it under the title Healing Infidelity. I also keep up a blog on the topic where I post weekly.

It was the following year, 2012, that I first started noticing the symptoms of what I would later learn to be Parkinson's.

What is Parkinson's Disease?


A good brief definition is found at http://www.parkinsons.org:

In the normal brain, some nerve cells produce the chemical dopamine, which transmits signals within the brain to produce smooth movement of muscles. In Parkinson's patients, 80 percent or more of these dopamine-producing cells are damaged, dead, or otherwise degenerated. This causes the nerve cells to fire wildly, leaving patients unable to control their movements. Symptoms usually show up in one or more of four ways:
  • tremor, or trembling in hands, arms, legs, jaw, and face
  • rigidity, or stiffness of limbs and trunk
  • bradykinesia, or slowness of movement
  • postural instability or impaired balance and coordination.

 Of course, much more could be said about it all. Visit that site for more information than I can provide here. In the following blog posts, I'll be relating what symptoms I've had so far and what steps I've taken to deal with it.

Thursday, March 27, 2014

And So It Begins--The Blog, That Is

Hello. My name is Rick Copple, and I have Parkinson's Disease.

Not like I'm addicted to it like an Alcoholic's Anonymous Association member. I only wish it was that easy to get rid of. Alas, at this time it is still an incurable disease.

But before I dive into what this blog is about, I want to convey why I'm writing this blog and what any subscribers can expect.

I have multiple reasons for writing this blog.


  1. Recording my history and progression with the disease. Several years down the road I won't forget details and dates. Already some of the early symptoms aren't precise when they started, since I didn't realize at the time they were the beginning of anything.
  2. Journaling helps me to process what is happening and deal with it better.
  3. For my doctor, if he and she so desire to get an overview of what is going on with me (though they probably don't have the time).
  4. For my family, both immediate and extended who want to keep tabs on how it is going with me.
  5. Anyone else who is simply interested, though I don't expect that list to be huge.
  6. Finally, who knows? Someday this may become the material for a book if it ends up proving of interest to people.

 I don't plan on keeping a regular schedule of posting. I'll post when new information arises. Doctor visits and what resulted from them. Changes in medication. Any significant progression of the disease and/or new symptoms--as well as remissions. Hey, miracles still happen. I'm not shutting that door. Anything related to the disease I find enlightening or important, like new medicines and procedures to treat it.

There may be weeks I post two or three times. Other times, I might go months without posting anything. Just depends on my schedule and whether I have anything of value to report. Therefore, if you want to keep up with my experiences with Parkinson's, be sure to subscribe by RSS feed or follow by email. Both links are in the top-right corner.

During the coming month, I'll post more frequently as my schedule allows since I've got to catch the blog up over the last two years of PD events, as well as establishing a foundation to launch from.

If you want to join me on my journey until I can no longer keep the blog up, for whatever reason, you're welcome to do so. Thank you for your prayers and support. More to follow soon.