shakin' it up.

I just saw the Parkinson's/Movement Disorder specialist yesterday, after months of seeing the MS doctor (who is wonderful), and they basically came to the same conclusion: it's Essential Tremor, or ET. It's getting a little worse. It's spread to my legs, which is rare in ET, but can happen. Sometimes I feel my lips tremble but I'm not sure if it's in my head. ET typically strikes the hands, then moves up to arms, head, mouth, and voice. ET is a progressive neurological conditon, and usually strikes those 65 and older, although - surprise - young people can get it, too. There is no cure. Usually it runs in families, but not in mine. Doctors are very candid with patients - tremor is the hardest thing to treat. It usually isn't effective.
The top line medicines for it are the beta-blocker propranolol and the drug primidone, both of which did not help. Now we are on gabapentin (Neurontin) three times a day, with klonopin twice a day, and we are slowly upping the Neurontin to see if that works. After that, there's only Topamax. There IS one doctor in the city, at Mt.Sinai, who can prescribe an experimental drug - Xyrem - and its active ingredient is GHB. Yes, you read that right. GHB, the date rape drug. Roofies. In small doses, apparently it calms tremors. But because it is so tightly federally controlled, only certain doctors running the program can prescribe it. I looked it up - first of all, it's over $2,000 a month. Second, the side effects don't seem worh it. So I'm not considering that as an option.

I'm not going to lie. Everyone's like, oh, thank goodness it's not PD or MS. Well, I appreciate the sentiment, I really do - but if it were one of those, at least we'd have a treatment plan. With this, we're just like, okay, up the meds, see if it works, if we add Topamax and it still fails, you're shit outta luck. At least for now.
If I sound bitter or angry, I am. Two years ago I was training for a triathlon, and now I can't even run up and down steps. I am the girl everyone goes around when walking down subway steps, because I am the one holding onto the railing and taking each step slowly. I've learned to wait until the crowd subsides and then walk down. I'm tired all the time. I can't write longhand, which I love. I mean, I can, but it tires me out and it looks like chicken scratch, which only angers me more.

So with the help of Pura Vida bracelets, I am making a custom bracelet whose proceeds will be given to the NYU MS center, the NYU Center for Parkinson's and Movement Disorders, and the International Essential Tremor Foundation. They'll be coming in in a few weeks, and if you're interested, let me know. I'll be selling them for $5 and all proceeds go to the organizations. The string colors will be purple, white, black, lime green, and gray.

Yesterday, after my appointment, I felt hopeless. Like I only had a few more chances to deal with this tremor that has hijacked my life. I went to Brother Jimmy's BBQ (which claims to be Carolina BBQ)  and ordered a beer and a Cheerwine float, along with hush puppies and pulled BBQ chicken with cornbread and fries. And another beer. And then I came home and went to the store and got Mike's Hard Lemonade. I drank three and proceeded to pass out on my bed. This is not typical behavior,  but really, what are you supposed to do? I wallowed in it for one day and now I'm taking action.

I am a person who has been athletic all her life. This has seriously impacted me. It's also impacted my cognitive abilities a tiny bit to the point where I need to take notes when I read to remember things, and whereas it used to take me a day or two to finish a book, I need all week. It is incredibly disheartening. It used to be called "benign essential tremor," but they realized that it was anything but benign. So Google it, ask me questions, buy a bracelet.....millions of people suffeer from ET, and we deserve a cure just like any of the cancers. Or at least more medication options.