How does society see those with Essential Tremor and Parkinson’s Disease differently?
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The truth is, “shaky hands” isn’t just one thing. Essential Tremor and Parkinson’s Disease (ET and PD) both have that as their most distinctive feature. But unfortunately, society doesn’t actually know much about the differences between them. And more importantly, society holds some myths and stereotypes that actually hurt the people with these conditions.
Before we go about telling you about these conditions and then dispelling the myths, let’s meet the people who were kind enough to open up about these issues.
But wait, where did all these people come from? Well, part of GyroGear’s belief is to build a strong community, and these people are part of it! GyroCircle is our established group of volunteers (we could even call many of them friends now!) whom we constantly communicate with and get feedback from. These are individuals with an indomitable fighting spirit, and are determined to live their lives as fully as possible in spite of their conditions.
Essential Tremor (ET) on the other hand, manifests the shaking as the primary symptom. While PD is often diagnosed at 55-65 years of age, ET can occur at any point in a person’s life, and in 60% of cases, is hereditary and can affect young children. In fact, it’s believed that 5% of all children will have ET. It’s also more pronounced during movement, and while it predominantly affects hands, the legs, head, and voice can also be affected.
Lastly, ET is estimated to be eight times more common than PD, but as of yet, there is no established link to prove whether the former is a risk factor for the latter.
Jackie Farrell, who works to raise awareness about ET, is determined to illuminate society. “Whenever I explain that I have essential tremor, many people tell me that they had never heard of it. But it’s not their fault; that’s because science and medicine haven’t really done much research into it, so it doesn’t have the exposure in the media that PD has.”
GyroGear’s founder, Joon Faii, also had a comment for that: “we spend a lot of time trying to fix the bigger problems, like cancer or heart disease. They are obviously important in and of themselves, but we also need to think about the problems that other people are facing.”
Many of the stereotypes are unfairly foisted on those with PD as well. John identifies strongly with that: “I can’t walk in a straight line, I can’t speak clearly… I have to carry an identification bracelet and a medical alert card that CERTIFIES that I have Parkinson’s Disease.” Not only that, the card also reads (yes, capitalized!): “I AM NOT INTOXICATED. Please call my family or physician for help.”
Given that there are at least ten million in the USA and one million in the UK with ET (and millions more worldwide!) and about ten million globally with PD, it’s likely that we will run into someone with these conditions in our lifetime. So when we start thinking about someone’s shaky hands, or feet, or head… let’s also add on a “how can I help?” to that thought process.
There are a couple of medications available for ET, such as propranolol and primidone, but it’s important to note that medications for PD will not work for ET in general. Furthermore, as the disease progresses and more medications are taken, even more side effects may arise. In fact, propranolol is a concern if someone is on specific respiratory inhalers. For many, the presence of such side effects is often enough to make them consider not taking certain drugs or any drugs at all! Thus, many turn to meditation or mindfulness help to control the tremor, or even yoga and dancing.
Now, with the increase in younger patients being diagnosed with ET, it’s important to also see that they’re just as capable as you and I. Many of them, such as Ed Lecorgne (you can read his incredibly inspirational story here), are skilled at photography and videography… and in fact, that’s what he does for his work! These individuals aren’t just “getting on with their lives”, they’re fighting to be recognized as equally capable as others.
No one wants to give up without a fight either. John declared “I’m not ready to just live with it [PD], it’s embarrassing, but I’ll still go out and do it anyway”. It’s obvious that their fighting spirit is admirable. So, a good way to support everyone who is fighting these battles is to increase and spread awareness of these conditions.
A huge way of doing that is by acknowledging them and giving them visibility. An interesting fact that was shared was that the late actress Katherine Hepburn, once thought to have PD, actually had inherited ET! “The tremors she was displaying on screen, from the shaking head and voice, were actually essential tremor,” John shared.
However, back in her day, studios would endeavour not to share these details about their stars. It was only after her death, when her niece spoke out about it that people knew why! Michael J Fox on the other hand had PD and started a campaign to make this condition more visible, and therefore legitimize these problems. But, if you think about it, there are over a million people who are “visibly” shaking. They’re living life as fully as they can… shouldn’t we give them a helping hand and legitimize them too?
Something that greatly touched Jackie after the ET awareness event she hosted was that she received emails from attendees stating how they “found meeting others with the same condition extremely beneficial” and “ didn’t feel so alone” in their fight. So, here are some good places to start: call your local chapters and volunteer today!
Have any more links to other foundations across the world? Put them in the comments!