How do you view Parkinson’s Disease and Essential Tremor?

How does society see those with Essential Tremor and Parkinson’s Disease differently?

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When many people are asked what they associate “shaky hands” with, they often respond with a few standard answers. “They’re probably just old… my grandma had the shakes!” or, “they must be ill or have Parkinson’s Disease”.

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.

John is a retired New Yorker who was diagnosed with PD. Even though he goes out of state for treatment, he still makes time to speak to us regularly. When he can, he enjoys woodworking. Like John, Andrew also loves to make things with his hands: in this case, he’s a glassblower. He was diagnosed with ET, but he is still displaying his amazing works in juried competitions! If that doesn’t impress you, we also have Jackie, who is supported by National Tremor Foundation (NTF) here in the UK, and whom we work very closely with. She recently organized and hosted the NTF Essential Tremor awareness event held in London, and encouraged people to speak up and share their stories.

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.

Parkinson’s Disease (PD) is a nervous system disorder and progresses over time. Next to tremors, other symptoms include muscle stiffness, slowing of movements, difficulty swallowing and speaking. The shakes are more commonly seen when the body is at rest, and usually affects the hands.

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.

“When I was in the army, they just assumed I was an alcoholic,” said an older gentleman, who was at the event, shrugging. He’s not the only one that suffers from all this negative stereotyping. Andrew said “people pay unwanted attention”, but that he refused to let it bother him. In his fight with ET, he treats the comments like “water off a duck’s back”, especially since “it’s something I just have, I can’t do anything about it. We should be treating others the way we expect to be treated”.

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.

People on PD medication often have to take a large range, from tremor dampeners to even anti-depressants. These medications are required to be taken multiple times a day over the course of their lives. John gives a very sobering realization: “I take a lot of meds and, so far, they work for awhile, but then they become less effective. Then you increase the meds, but are suddenly falling asleep at the wrong times. And you begin to worry about tomorrow.”

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.

It’s very clear that everyone wants to be treated in a respectful manner, and with greater awareness, that can happen on a larger scale! One commonly-echoed emotion amongst those with ET was that they would like to be understood as separate from those with PD. “Very often we’re grouped together with PD, and when some patients are diagnosed with just the tremor, they are told to go home and just live with it,” said Jackie. This is a very common story amongst ET patients. Therefore, she reinforced, “it’s important now that we raise awareness that these are two separate neurological disorders.”

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?

As mentioned, awareness is a great start. From understanding more about the conditions above, to spreading that knowledge and attending events, every little bit helps. “No one likes to feel othered,” Andrew said, and rightfully so. Jackie too had strong feelings about raising awareness: “After all, the more it’s spoken about, the more coverage it gets, the more the public will be aware of the difference between the two!”

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!

National Tremor Foundation (UK)
International Essential Tremor Foundation
Parkinson’s UK
National Parkinson Foundation (USA)

Have any more links to other foundations across the world? Put them in the comments!