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12 Things You Don't Understand About Parkinson's Unless You Have It

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Sure, you can watch celebrities like Alan Alda and Michael J. Fox talk about life with Parkinson’s disease. You can read medical articles and understand the definition of Parkinson’s, which is a neurodegenerative disorder that targets the neurons in the part of the brain that produce dopamine. This results in motor symptoms like tremor, rigid limbs, balance and gait problems and slowness of movement; and non-motor symptoms like sleep disorders and depression. But there are some things a textbook or doctor can’t tell you — like what it’s really like to live day in and day out with Parkinson’s.

What is Parkinson’s Disease?

When it comes to those details, only someone else who has Parkinson’s can give you that insider knowledge. If you’re newly diagnosed, they can tell you what to prepare for, and if you’ve been living with Parkinson’s for a while, they can tell you that you’re actually not the only one experiencing that “weird” symptom. So we asked our Mighty Parkinson’s community to share something people don’t tend to understand about Parkinson’s unless they have it themselves. Check out the “secrets” they shared below. Did we miss anything? Be sure to leave a comment and explain what you would add to our list.

1. It can be frustrating not being able to do small things.

The tremors, bradykinesia (slowness of movement) and rigidity caused by Parkinson’s can make doing things requiring fine motor skills difficult. For example, you might have trouble buttoning a shirt or cutting a sandwich.

Ellie Finch Hulme, blogger at PD Mama, explained:

How frustrating it is not being able to do the smallest of things, despite willing your brain to send the right message and have the right limb, for example, receive that message and act upon it. Things as simple as moving fingers to type. Things that we take for granted in our everyday lives.

2. Tremors are not always visible — they can be internal, too.

“People who do not have Parkinson’s do not understand what internal tremors are,” Sharon Krischer, blogger at Twitchy Woman, said.

Most people are aware that external tremors are a hallmark sign of Parkinson’s, but what many people don’t know is that tremors can also be internal. This feels like a shaking sensation inside the body.

3. Women with Parkinson’s disease may present with different symptoms and challenges than men.

For women, hormones can impact Parkinson’s and vice versa — you might notice worsening Parkinson’s symptoms, heavier menstrual flow, more fatigue and less effectiveness of medications while you have your period. Some research has also suggested that during the “preclinical” phase of Parkinson’s, or period of time before a doctor’s diagnosis, women’s non-motor symptoms may be more prominent than their motor symptoms, meaning they may get diagnosed later than men do.

Maria De Leon, blogger at Parkinson’s Diva, shared:

Unless you are a young woman with PD, you don’t realize the impact that having hormone fluctuations play on the symptoms of the disease, while PD itself [can] worsen the menstrual cycle and other hormonal related medical problems like migraines. [Also], how young women with PD take longer to get a diagnosis because of the prevalent non-motor symptoms at presentation compared to their male counterparts.

4. Parkinson’s symptoms are not necessarily the same every single day.

Like most chronic illnesses, Parkinson’s disease does not look exactly the same every day. One day you might feel more fatigue; another day you might realize you’re not moving as slowly as you were the previous week. If you experience these “ups and downs,” you’re definitely not alone!

Blogger Linda Olson explained:

Parkinson’s disease is an erratic partner of mine. Some days I’m stiff and sore and anxious, on those days my mantra is, ‘I can do this.’ Then for no reason at all, it lightens up for a while. I look forward to these ‘gratitude days’ and make sure I share them with those around me.

5. Depression sometimes comes even before other symptoms.

Not everyone with depression will get Parkinson’s and vice versa, but it is common for depression to be among the very first symptoms of the disease to show up.

Sherri Woodbridge, blogger at Parkinson’s Journey, explained how this depression feels:

One of the first symptoms that is often overlooked (while Parkinson’s is frantically trying to make its mark on your life) can be depression. By the time you are actually diagnosed, you may feel like your whole world has caved in and your diagnosis adds a thousand ton weight upon you as you lay smothered in a pit of grief.

6. Parkinson’s drugs can lead to side effects that resemble Parkinson’s.

It sounds unbelievable, but it’s true: drugs designed to treat Parkinson’s can actually cause involuntary movements — a common symptom of Parkinson’s itself. For example, levodopa helps replace dopamine that is lost by Parkinson’s, but a potential side effect is dyskinesia, or involuntary movements.

Hulme noted:

How ironic it is – a condition that can involve shaking, stiffness and slowness of movement, sometimes all in the same day, not to mention the fact that some of the drugs used to stifle inadvertent movement can induce… wait for it… inadvertent movement (dyskinesia)! I mean, come on!

7. Many people with Parkinson’s utilize non-drug treatment options.

There are a number of drugs that can help manage Parkinson’s symptoms. But non-pharmaceutical methods may also be a part of your toolbox. Getting regular movement can help prevent muscle stiffness improve motor symptoms, so exercise like boxing, walking and weightlifting are recommended. Others might take comfort in complementary therapies like acupuncture and hydrotherapy, though there is not as much research behind them.

Karl Robb, blogger at A Soft Voice in a Noisy World, shared what works for him:

Having had Parkinson’s disease for over 30 years, I have identified a variety of triggers like lack of sleep, stress, lack of hydration, poor diet, and feeling rushed can all contribute to my Parkinson’s disease symptoms. Finding complementary therapies and practices such as reiki, Rock Steady Boxing, massage, meditation, and reflexology have all offered me tools to improve my condition.

8. Reaching out to friends for help doesn’t make you a “burden.”

When you’re first diagnosed, you might feel embarrassed or guilty about asking for help, worrying that you’re burdening others. But the more you become accustomed to Parkinson’s and realize how helpful it is when friends lend a hand (or ear, or any type of support that lightens your load). There’s no need to feel guilty for asking loved ones to support you, and any true friend will be glad to do it.

“Parkinson’s disease is a neurodegenerative disease that is slowly stealing many of my motor and cognitive skills. Friendship has become more precious as I learn to ask for and accept help more often,” Olson said. “And… surprisingly, my friends are grateful when I ask for and accept their help.”

9. Parkinson’s may be invisible, but that doesn’t mean it’s not there.

Like many chronic illnesses, Parkinson’s may not always cause “obvious” symptoms. However, just because there are times when other people can’t “see” your symptoms, that doesn’t mean you’re not still feeling painful, uncomfortable symptoms, mental health challenges like anxiety and depression, or dealing with the stress of communicating with insurance companies or getting accommodations from work. “Invisible” doesn’t mean “easy!”

“Parkinson’s is an invisible disease and the majority of people don’t get that. It’s a disease that may not look like much of anything to some people, but if you’ve got it, you had better believe it’s something indeed,” Woodbridge said.

10. Friends who also have Parkinson’s can bring so much joy to your life.

One of the things you likely heard when you were first diagnosed was, “Join a support group!” If the suggestion didn’t thrill you when you first heard it, you’re probably not alone. But people who have literally felt what you feel can offer a kind of support and understanding that no one else can. And nowadays you don’t have to go to support groups in person — you can join groups on social media or post Thoughts and Questions on The Mighty to meet and chat with other people with Parkinson’s.

“I cherish my friends with Parkinson’s disease. We understand each other in ways that our family and friends do not,” Krischer said.

11. Parkinson’s affects younger people, too.

It’s true that the average age of diagnosis is 60. However, young onset Parkinson’s disease occurs in people younger than 50, and affects 2 to 10 percent of the one million people with Parkinson’s disease in the U.S.

As Nikki Louiselle, blogger at Just Shake It Off, explained:

Unless you live with Parkinson’s disease you most likely see it as an ‘old person’s’ disease. I did, until I heard those devastating words. Until I received my diagnosis 17 months ago, I thought it was something old people had. I’m 46.

12. Parkinson’s might teach you things you never knew about yourself.

There’s no doubt that the physical and emotional challenges of Parkinson’s can change your life in pretty difficult ways. But some people with Parkinson’s find that it helps them discover who their true friends are, focus on the “little things” that make them happy, and learn to appreciate a slower pace of life.

“My Parkinson’s disease may have reduced my speed for moving and my reaction time, but in doing so, it has allowed me to appreciate the world at a pace that I would have never experienced. I am grateful for so much!” Robb said.

Whether you are seeking a diagnosis, just received your diagnosis, or have been living with Parkinson’s for a while, hearing what others have gone through can hopefully bring you reassurance that you’re not alone. Parkinson’s may feel like it’s turned your life (and body) upside down, but there are people out there who are ready to support you. Check out these stories for more insight into the Parkinson’s experience:

Originally published: April 11, 2019
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