After My Parkinson’s Diagnosis, I Finally Learned to ‘Embrace the Shake’

“Parkinson’s? What is that? I can’t get that, I’m too young.”

When I was growing up, my parents often told me I was born in the wrong decade. I had more hair than my petite frame could handle, and it often turned into a complete frizz ball.

Like my friends, I enjoyed listening to the Backstreet Boys and Britney Spears, but my favorite band was, and still is, Crosby, Stills, Nash & Young. (If you don’t know who they are, go ask your parents.)

My dad would tell me I had an old soul, as I was always putting others ahead of myself. Unfortunately, my brain took the “old” part a little too seriously, convincing my body that I was a middle-aged woman rather than a young girl in her early 20s.

I still remember the first time I had tremors. I was scared because I didn’t know what was happening to my body. I was 17 at the time and sitting in math class when my hand started trembling. Later that day, I went home and told my parents what had happened.

We decided to keep an eye on it for a little while, and if it persisted, we would see my doctor. It did, and after a few appointments, the doctor determined I was hypoglycemic. I was told it would subside if I ate more.

Yeah, right. I wish.

Instead, I ended up seeing four different neurologists and having several tests, including bloodwork, MRIs, and copper testing, among others. All of them were negative.

Finally, my neurologist, who was based at Rush University Medical Center in Chicago, recommended I get an imaging test called a DaTscan. The DaTscan confirmed that my symptoms were caused by Parkinson’s disease. Because my doctor was out of state, my parents were informed of my diagnosis, and then they told me.

Being diagnosed with Parkinson’s while younger than 50 is tough. But being diagnosed at the age of 21 was even tougher. I felt alone, believing that I was in this fight by myself.

Eventually, I attended young-onset Parkinson’s support groups in my area, but even there most of the attendees were my parents’ age. I was a senior in college at the time, and when going to local support groups became a total bust, I turned to the internet. There, I found many other Parkinson’s patients, known as “Parkies,” close to my age. Finally, I had friends I could talk to, and they understood me 100%.

On some of the tougher days following my diagnosis, I had to find a way to focus on positive things again. At that point, I developed my life’s motto, and the title of this column: “Embrace the Shake.”

My motto entails a few different elements. First, live a life full of love and laughter. If you ever find yourself in a room full of Parkies, you’ll notice that many are having a good time, and most are cracking up laughing. We all make fun of ourselves. For example, I have a shirt that says, “I’m NOT drunk. I’m NOT on drugs. I HAVE PARKINSON’S.” I tend to wear it on bad days to avoid needless questions.

Next, educate yourself. When someone is diagnosed, they usually have considerably more questions than anyone else, and it is important to get them answered before anything else.

Many resources are available that strive to help people like us. Two national associations in the U.S. are the Parkinson’s Foundation and the American Parkinson Disease Association.

While these two resources are helpful in pointing a recently diagnosed person in the right direction, local groups can help them find answers. Local resources can connect people to other Parkinson’s patients in similar circumstances, as well as various support groups, and they can provide information about movement disorder specialists in the area.

Last, but certainly not least, if you are recently diagnosed, advocate for yourself and others. I know that as a new patient, this may seem like a daunting task, but the more one knows, the more advocating becomes second nature. I love teaching others that Parkinson’s is not an “old man’s disease,” it is everyone’s disease.

I do most of my advocating at the mailbox, when other residents of my community see my trike and comment on it. I simply say, “I ride it because I have Parkinson’s.” Then, a conversation about Parkinson’s disease usually follows.

Since my diagnosis, I have finished college, gotten married to my husband, Derek, and recently moved with him across the country, from Wisconsin to Florida.

Of course I have days when everything seems to fall apart, but if this happens to you, just remember to keep fighting, and always “embrace the shake.”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.