Over the past months, I’ve learned these things.
- I don’t have Parkinson’s.
- MRIs are really, really loud.
- I don’t have Wilson’s Disease.
- I’m not even remotely claustrophobic. (This wasn’t a surprise, you don’t get to be a puppeteer with claustrophobia.)
- I don’t have a thyroid issue.
- My bloodwork is in really good shape.
- I don’t have any tumors.
- The inside of my head is beautiful.
- And what an Essential Tremor is.
It’s the most common movement disorder, affecting some 10 million people in the US alone. That’s 1 in 30 people, including me. It’s what Katherine Hepburn had. Hers was in her head. Mine is in my hands.
This has, as you might imagine, caused me some consternation. Puppeteer. Writer. Letters. Before either of those, violin and art. I’ve pretty much always defined myself by what I could do with my hands. Now, mine is mild. Really, really mild. My neurologist says that I probably only noticed so early because of what I do with my hands. Unless I point it out to you, you’re not likely to notice the shaking at all. Even on a video monitor.
How do I know this? Because they’ve been shaking, off and on, for at least two years.
But there is a difference between “Hm… I wonder why my hands are shaking right now?” and “Oh. There’s the tremor.” It’s a progressive disorder, which has absolutely no impact on length of life or other health issues. It progresses at different rates for different people. I might stay at exactly this point. There’s no way to know.
To be honest, I debated on whether or not to mention it. My fear was that people in the puppetry industry might decide not to hire me because of concerns that my hands will shake. Realistically though,I’m doing so little puppetry these days that, even if the tremors were obvious, it’s sort of a non-issue.
The reason I decided to go ahead and talk about it is that, it’s such a common disorder and yet– most people don’t know about it. There are a lot of “invisible” disabilities ranging from chronic pain to depression. I’m coming to realize that the more we decide to be secretive about our imperfections, the more we stigmatize and marginalize the people who suffer from them.
As I’ve said, my essential tremor is really mild. But… here. Watch this video from the International Essential Tremor Foundation.
And if you’re feeling generous, donate to the foundation to help fund research.
Mary, so glad to hear it’s not Parkinsons or anything else that is as serious. And thank you for speaking out and telling people what you’ve been going through. You are right, people should not be silent about “invisible” disabilities and the more “visible” people like you speak out, the easier it is on anyone else who is struggling. Take care!!
Lots of good news, and information about the rest. Thanks for sharing this, Mary. Gorgeous brain!
I want to hug the woman whose frustration at not being able to do such a task as reading, her feelings of uselessness… And give her an iPod filled with audiobooks by her favorite authors with speech-to-text transcription, etc. Thank you for sharing, I had never heard of this; it boggles the mind that it effects one out of 30 people in the US and yet has had no directed research.
That was very much my feeling.
Yes, My heart breaks for this woman.
“I’m coming to realize that the more we decide to be secretive about our imperfections, the more we stigmatize and marginalize the people who suffer from them.”
I agree. Thank you so much for sharing, and all the best wishes to you going forward.
Mary, one of your many gifts is shedding light in dark places, through the many facets of your artistry. Thank you for sharing this, and your beauty and gorgeous fragility, with the world. ??
Thanks for speaking out. As someone with an invisible disability, we appreciate not covering it up.
Now, you must wear fabulous trousers* like Kate did and put everyone in their place with quips.
*and if you put your hands in the pockets, the tremors won’t show! win-win!
My goodness! I’m glad to hear it’s not Parkinson’s, Wilson’s, or your thyroid. Thanks for sharing about Essential Tremor — and I so hear what you say about defining yourself by what you do with your hands.
I’m glad to hear it’s not something more serious, even if this is something that, I’m sure, is disconcerting some days. The inside of your head is, indeed, lovely 🙂 Thanks for sharing that!
Thank you so much for sharing. My grandfather had essential tremor, and I have a feeling my father will develop it, too.
It’s sometimes called “familial tremor” because it often runs in families.
My dad’s handwriting has definitely gotten wobbly in the last 10 years. I know it’s something I’ll need to watch out for.
Fortunately, there are medications out there that can alleviate some of the symptoms.
My father’s greatest passion is art, and he’s developed a hand tremor too. Pen and ink is (was?) his main medium. It’s hard watching him go through it, so I can empathize with the scares, worries, and concerns when it comes to this. Please accept my well-wishes.
Oof. That must be so hard for him. If he hasn’t seen a neurologist, encourage him to do so. There are medications that can help.
“8. The inside of my head is beautiful.”
The outside ain’t too shabby either.
Thanks, Dad!
I’m so very happy that it isn’t something serious, and that you are talking about it anyway. My tremor is much worse than yours — trust me, I’m not bragging about this — and there are many times where it isn’t an invisible disease for me.
On good days, I barely notice it. It stays in my hands, and the only thing it really limits is my handwriting. Angie pretty much fills out any forms I need to do these days, and I just sign them.
On bad days, I can’t use a spoon, I struggle to type and it spreads to my face and limbs. People trying to give me a hug or a cuddle will often say “God, you are shaking like a leaf! What’s wrong?”
So it helps a lot to hear someone like you talking about it. Even if it doesn’t fix mine, at least I know someone else understands.
See the “you’re shaking like a leaf” comments are what make me think of Essential Tremor as an invisible disability, because people don’t know what it is, so they assume that you are nervous or upset.
That makes sense. I was thinking more in terms of “they can see/feel that I’m shaking – they have no idea what my brain is doing to me.”
Dave, in case you don’t already know about this help for the spoon issue: http://www.google.com/liftware/
That is really, really cool. I love science.
David, thanks for sharing that.
I’d never heard of Liftware, but at least on family member would greatly benefit from it.
I’m so glad your diagnosis wasn’t worse, though I’m sure it is aggravating to deal with. My dearest, longest-time friend has had essential tremor for 50 years or more, in her hands, but it hasn’t progressed. I remember noticing it in high school, and she called it “essential tremor” back then, and since it hasn’t got worse, she’s never had problems with it. Thanks so much for shedding light, and sharing the video. Best thoughts your way.
So, so, glad to hear its not Parkinson’s, Mary.
I have essential tremor, as does my sister, my dad and my uncle. Dad’s was the absolute worst and more than one neurologist assumed Parkinson’s until the meds didn’t work. The wrong diagnosis was also there due to my late paternal grandfather’s (now considered incorrect) Parkinson’s diagnosis. Grandpa had what would now be called Lewy Body dementia.
For me, at this moment, my tremor is not horrible – as an IT project manager and programmer, it rarely hits my work beyond excessive typos or sloppy handwriting. I haven’t painted in years, but I can see some of the tremor in my last works. My sister’s knitting has yet to be hindered, but I do worry about her extensive cooking and fine knife skills. My uncle recently retired from his architectural career and the tremor can show in both his drawing and woodworking.
Last year, Dad had DBS (deep brain stimulation) surgery at 72. The results were absolutely amazing. His tremors were becoming beyond frustrating and making standard living difficult. When he turns off the unit, it sounds like his hands are playing drums on the desk. He’s always had hands on jobs and hobbies – he started an engineering career as a draftsman, loves woodworking, etc. The surgery gave so much back to him.
I hope your tremor never progresses to that degree, but do keep in mind that there are some options if it does.
The DBS is really a miracle worker. I’d seen its effect on Parkinson’s patients, and was reassured when I heard that it was an option for ET. Although, as I mentioned, mine is nowhere near needing that. I’m so glad your father has access to it.
I truly hope that your tremor never gets to the stage where it merits DBS, but was very surprised that kind of surgery was far, far less scary than expected. Heck, even the neurosurgeon called DBS easy compared to other types of surgery. It helped that Cinci is a center for it.
The other amazing thing was watching the medical bills come in! The DBS would never have been possible if not for a combination of long held pension related benefits and Medicare. The bills were so off the charts as to be unbelievable. Not surprising that mega-corp where dad worked is now pushing pension folks off to the market. Don’t know how his helicopter trip for a heart attack 10 years ago would work these days – that went from a 10k bill to a less than $500 copay. Yep, even with that, we know he was lucky.
Mary, I’m so glad the shaking wasn’t something worse. But I’m sad that you got it at all. Here’s hoping that your tremors stay a mild case for a long, long time!!!
I’m very sorry to hear this. Like you said, it could be worse, but it’s still not good news.
Any neurological disorder is bound to have some life impact, both for the patient and for those who know and love them. I’m pleased not only to hear yours is of the milder variety but that you were also able to receive a definitive diagnosis. Unlike automobiles it just isn’t practical (mercifully) to swap out parts in a human in an attempt to isolate a mysterious ailment. Though at times it can sure feel like that’s what is happening with each successive Medical Test To Rule Out X, Y or Z. With a diagnosis and a prognosis in your pocket, now you can actually march ahead instead of spinning around, fretting. Bully for you, Mary. No way will this hold you back.
And I know what you mean about MRIs. The darn things make loud and weird sounds worthy of a Pink Floyd concert.
I’m sorry to hear about the tremor! But I’m happy to hear that it’s not Parkinson. I hope it won’t progress to anything too bad.
My son (in his 20s) has developed essential tremor that’s much worse when he’s physically or emotionally stressed. We’re hoping that medication will at least level off the extremes – it’s not really noticeable most of the time. It was nerve-wracking waiting for worse things to be ruled out (fortunately, like you, he’s not claustrophobic – I can’t handle MRIs for any length of time if my head’s enclosed).
Thank you for being open about it. As someone living with a couple of invisible disabilities, I know how important openness is for reducing stigma. I hope that medication works for you with maximal effectiveness and minimal side-effects.
Sorry it’s not one of the treatable diseases, glad it’s not one of the more worrisome untreatable ones, and sorry about the whole thing!
May your tremor never worsen.
There are some treatments for managing symptoms, although we’ve decided to hold off on medication until/if it interferes with life.
That’s really interesting. My hands shake — they’ve been doing it for years — and I never thought anything of it. I had no idea there was a name for a tremor that appears in isolation like that. Thank you for educating me. 🙂
It’s worth getting it checked out, because there are a couple of other things that are less pleasant that are linked to tremors. It’s probably nothing, but still. Better to check.
Yes, I’m sure you’re right. Maybe once I get this last round of medical debt paid off, I’ll look into it. Can’t hurt, right?
I’m glad the diagnosis wasn’t one of the more terrible ones. However, I’m sorry that it’s a health problem that will affect you negatively. I wish you the best. I do. May yours be a case that is very, very slow in progressing to the point of not ever causing you much trouble.
Beautifully stated. Thank you for sharing this and choosing to educate others rather than remaining silent. Take care of yourself. ?
1. Yay, no Parkinsons, Wilsons Disease etc. I hope to read much of your work for many years to come.
2. MRIs are miserable. You have my deepest sympathy.
Oddly, I sort of enjoyed the MRI. It was sort of like having a nap at a Phillip Glass concert.
Hi Mary, lurker here, thanks for sharing. I was diagnosed with ET in Dec 2014-Jan 2015 and although the tremor is very mild, it’s been wreaking havoc with my emotions. I too do a lot with my hands (and voice) and it’s really good to have someone like you spread the word about it.