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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.

1 comment:

  1. This is no consolation, but I have Essential Tremors. It is a PITA, but I've learned to live with it. Mine progresses with age and so has the virtue of being predictable.