Meeting ET
Some weird physical stuff has been happening. I talked about it here. Starting in the springtime, my motor control "just didn't feel right," and I finally went to my doc in early May. I was afraid I had Parkinson's disease. In the intervening months, it's been a case of running the medical gauntlet. My doc suspected a pinched nerve, so I had an MRI, followed by a series of spinal injections over the course of 3 months. Which did nothing. Then she turned me over to a neurologist, and I've had a brain MRI, EEG, and gave enough blood to satisfy Count Dracula for at least a month.
At long last, I have a diagnosis and a prescription. The neurologist is diagnosing it as "essential tremor." [Doesn't really sound like a disease, does it? But at least it has a catchy abbreviation. I can just see a series of future blog entries titled "My Life with ET."] And I have a prescription for clonazepam, which – it is hoped – will control the symptoms. And I'm to take an aspirin a day as a stroke precaution. [The neurologist saw something in my MRI that has him worried I'll stoke-out.]
"Essential tremor" or ET is "a neurological disorder that causes tremors (shakes) when a person attempts a purposeful movement." In other words, if I'm at rest, there are no tremors. The shakes only occur when I try to write, work at the keyboard, hold a coffee cup, etc.
There's no cure. But 50-75% of people manage the symptoms with drugs, injections, or brain surgery. It generally progresses over time, but one doesn't die of it. The great news is that the earlier it's diagnosed, the better the chances of not really being disabled by it. And compared to what it could be, my current symptoms are really minor; I can still brush my teeth, put on makeup (such as it is), and eat. So I have my Inner Drama Queen [and the nagging from Liz, to whom I give thanks] to thank for getting me to the doctor early. Lots of folks don't even seek help 'til their tremors are visible and interfering with routine daily chores like holding a cup of coffee.
Naturally, after getting this diagnosis, I went to the Web. I found the Mayo Clinic site provides a helpful basic introduction. More detailed information and a helpful discussion forum are available at WEMOVE.
Apparently, I'm not the only one who goes to the doctor fearing it's Parkinsons. According to WEMOVE:
Here's some good news: From what I'm reading online, alcohol tends to reduce the tremors. I'm beginning my own independent test of that premise tonight; I'll see whether it's true.
I expect some of you are wondering: "So how are you really doing?" That's a hard one. I'm kinda in shell-shock tonight. I'm grateful for the early diagnosis. I'm grateful when I read the WEMOVE forum and realize I'm not yet experiencing the kind of symptoms that many people do by the time they seek medical assistance. And, of course, I'm scared too, about where this might lead. Of the things I fear, dependence scares me the most.
A couple decades ago, a dear friend taught me to love bird-watching. [Thanks, Carol!] Occasionally she laughed at my compulsive need to know the names of the birds. Knowing the names of things seems to be important to me. I don't know why. But I am somewhat relieved that I now know the name of this thing that I'm living with. Despite hating the news, there is some comfort in finally being able to attach a name to this weird conglomeration of "weird stuff" I've been experiencing. "ET." OK. ET it is. Apparently, ET and I will be living together for the rest of my life.
Besides, I know that many of you are dealing with stuff that is much more immediate and life-threatening than this new thing of mine. I do recognize this is only a drama to me. TBTG for perspective and a sense of irony!
At long last, I have a diagnosis and a prescription. The neurologist is diagnosing it as "essential tremor." [Doesn't really sound like a disease, does it? But at least it has a catchy abbreviation. I can just see a series of future blog entries titled "My Life with ET."] And I have a prescription for clonazepam, which – it is hoped – will control the symptoms. And I'm to take an aspirin a day as a stroke precaution. [The neurologist saw something in my MRI that has him worried I'll stoke-out.]"Essential tremor" or ET is "a neurological disorder that causes tremors (shakes) when a person attempts a purposeful movement." In other words, if I'm at rest, there are no tremors. The shakes only occur when I try to write, work at the keyboard, hold a coffee cup, etc.
There's no cure. But 50-75% of people manage the symptoms with drugs, injections, or brain surgery. It generally progresses over time, but one doesn't die of it. The great news is that the earlier it's diagnosed, the better the chances of not really being disabled by it. And compared to what it could be, my current symptoms are really minor; I can still brush my teeth, put on makeup (such as it is), and eat. So I have my Inner Drama Queen [and the nagging from Liz, to whom I give thanks] to thank for getting me to the doctor early. Lots of folks don't even seek help 'til their tremors are visible and interfering with routine daily chores like holding a cup of coffee.
Naturally, after getting this diagnosis, I went to the Web. I found the Mayo Clinic site provides a helpful basic introduction. More detailed information and a helpful discussion forum are available at WEMOVE.
Apparently, I'm not the only one who goes to the doctor fearing it's Parkinsons. According to WEMOVE:
ET patients must be encouraged to learn as much as they can about their disease to help them better cope with the condition's progression. Once a diagnosis of ET has been established, the natural history of the condition should be explained to patients. In addition, because many patients fear that their tremor may be associated with PD [Parkinson's Disease], clinicians may reassure their patients by explaining the differences between the two diseases.And this is pretty funny. According to the "side effects" notice with the prescription I got today, the drug may cause "unnatural weakness, … clumsiness, or unsteadiness." But wait! I already have all those. LOL!
Here's some good news: From what I'm reading online, alcohol tends to reduce the tremors. I'm beginning my own independent test of that premise tonight; I'll see whether it's true.
I expect some of you are wondering: "So how are you really doing?" That's a hard one. I'm kinda in shell-shock tonight. I'm grateful for the early diagnosis. I'm grateful when I read the WEMOVE forum and realize I'm not yet experiencing the kind of symptoms that many people do by the time they seek medical assistance. And, of course, I'm scared too, about where this might lead. Of the things I fear, dependence scares me the most.
A couple decades ago, a dear friend taught me to love bird-watching. [Thanks, Carol!] Occasionally she laughed at my compulsive need to know the names of the birds. Knowing the names of things seems to be important to me. I don't know why. But I am somewhat relieved that I now know the name of this thing that I'm living with. Despite hating the news, there is some comfort in finally being able to attach a name to this weird conglomeration of "weird stuff" I've been experiencing. "ET." OK. ET it is. Apparently, ET and I will be living together for the rest of my life.
Besides, I know that many of you are dealing with stuff that is much more immediate and life-threatening than this new thing of mine. I do recognize this is only a drama to me. TBTG for perspective and a sense of irony!
posted by Lisa Fox at 11/09/2007 09:32:00 PM
8 Comments:
{{{Lisa}}}
I know the relief of at least having a diagnosis. And it sounds like you are handling the news with an appropriate sense of seriousness, humor, and perspective. I will continue to keep you in my thoughts and prayers. Here's to hoping that the occasional drink helps, too! :)
Lisa, it's good to have a name. I'd want a name, too. It's good that you're getting information about ET and how to manage it, but, at the same time, I understand that it's quite scary.
My prayer is that the treatment will slow the progression of the disease to a near standstill.
God be with you.
Have that drink.
Thanks for your kind words and encouragement. I've had the drugs for two days now, and I think I really do so a little improvement. I'll keep you posted.
I am relieved for you that you know what it is and have a treatment plan. That's one giant step forward, I think.
Your sense of humor and intelligence will serve you well as you learn to live with ET.
Lindy
Lisa, it's good you have the diagnosis and don't have to fear worse things. Hope the drugs and/or alcohol control any tremors you might have. That would be scary and frustrating. I hope the treatment works well.
Try again... blogger didn't accept my last comment.
Late but heartfelt prayers for you as you learn to live with ET. Perhaps thinking of it as that curious creature helps? In any event, it's your life so no need to relativise.
vvI agree with Caminante...no need to compare or make it relative. This is a big thing. And Deb and I give thanks that there is a name and a treatment.
Dear Lisa, all will be well. You will be well. We will be well. We all have our daily bread. What else is there.
love to you.
Lindy, I sure do hope you're right about my sense of humor and intelligence! At least now I have a ready-made excuse when I'm uncoordinated and klutzy.
Jan, you're right about the "scary and frustrating" part. One of the things that's challenging is working at the keyboard. It seems that I now spend more time backspacing and correcting than I do in writing.
Caminante, thanks for dropping in. But I don't know that I understand what you mean by the "relativize" comment.
Barbi, thanks to you, too, for dropping in amidst your travels. I'll say this to you, but I mean to say it to everybody here: I'm trying to be brave and optimistic. And I'm trying to keep my ironic sense active. But, fact is, I'm scared spitless. Like I said upstream: The only thing that scares me more than death is dependence. I am working very hard to keep the "glass is half full" mode. Sometimes I do better, sometimes I do worse.
But hear this: I am profoundly grateful to all of you for your support and your prayers. I don't expect to be healed. I wouldn't deign to bother God with this. God knows, lots of folks are dealing with much worse situations. But I sure do hope I can bear this with some grace and equanimity. That really is all I'm asking and hoping and praying for. Please join your prayers with mine.
Through most of my life, disability has been the thing I have feared most. More than death. I assume this has been given to me as an object lesson. I'm taking it as such. I assume the Spirit is now and will continue to be speaking to me in this. God willing, I will grow in grace. That's my most fervent prayer.
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