Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Saturday, May 15, 2010

It just keeps getting worse

My Dr asked for approval for more Botox, so we're just waiting or the "OK". I can't believe how bad my dystonia is now. It gets a little worse after each treatment. My neck is really twisted up now. At least I shouldn't have to wait too long for my next treatment. I'm going to ask my Dr to do inject most of it on the left side (my head turns to the right, among other things), because (apparently) that's the way it should be done.

The pain can be bad at times, but it doesn't last long. Since I usually work just 4 hours a day, it's just mildly annoying. All I need to do is stretch my neck for a few seconds, and I'm good to go - for a while. :)

I really should do more stretching and posture exercises, but there are times when I just get sick and tired of exercising several times a day. At least I do some exercises twice a day every day. I need to do more, though. I also need to do more research into what other people with cervical dystonia are doing. There's bound to be someone who found something useful. Since the only way I can get online now is by going to Starbucks for their free WiFi (2 hours with a food or drink purchase), I can't get online as often as I need to. Oh well. I'll post after my next treatment, if not sooner.

5 Comments:

At 7:16 PM, Blogger Suzanne said...

I was really hoping to hear that you're doing better with the botox. I'm so sorry that you've had so much pain. Yoga has changed everything for me. I start with very slow and gentle neck rolls then look left and right, up and down. Shoulder rolls help too. I get massages as well. Strengthening exercises like pilates can help but only if you're at a point where you can move comfortably. I'll be thinking of you and hope that you'll be doing much better and soon :)

Sue

 
At 7:04 PM, Blogger Dr. Robert T. Zozus, Jr. said...

I'm sorry to hear of your difficulties with Cervical Dystonia. I have been diagnosed since 2003. My head also turns to the right. I now have it pretty well controlled- but, it was a very rough ride. I use a combination of Botox injections, oral baclofen, oral Klonopin, and a Baclofen pump. Quite exotic. If you would like further information about my treatment- or, other resources that could be useful to you as you attempt to cope- please don't hesitate to contact me. You may do so by sending a message to my last name- zozus- and, then follow that with @ And, finally, myway dot com. Last name@myway.com. My Best Regards. I know how much this disease sucks! Bob

 
At 8:29 AM, Blogger 伯函 said...

enjoy your artical, thank you .............................................

 
At 4:58 AM, Blogger 則其則其 said...

在莫非定律中有項笨蛋定律:「一個組織中的笨蛋,恆大於等於三分之二。」..................................................

 
At 10:17 PM, Blogger 竹青 said...

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