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Hobbyism turned obsessive in Parkinson's disease

Darbe Schlosser
November 9, 2022
November 28, 2022

Keywords

Parkinson’s disease

Young-Onset Parkinson’s disease

Dopamine agonists

Apathy when coming off agonists

Parkinson’s Disease and the Effect of Dopamine Agonists

Parkinson’s disease isn’t just “shakiness” or a symptom of aging. In fact, Parkinson’s disease is a neurodegenerative disorder characterized by the loss of dopamine-generating neurons in the brain.

The symptoms of Parkinson’s disease include tremors, slow movements, stiffness of the limbs, and difficulty with balance. The symptoms usually appear gradually, often beginning as a slight tremor in one hand.

Nearly one million people in the U.S. have Parkinson’s disease, and about 60,000 new cases are diagnosed each year.

Young-Onset Parkinson’s Disease

Many people don’t know that Parkinson's disease can affect the younger population. This is what we call Young-Onset Parkinson’s disease (YOPD): Parkinson’s disease affecting individuals under the age of 50.

About 10-20% of the 60,000 patients diagnosed with Parkinson’s disease each year are under 50 — and nearly half of those are under 40.

Is There Treatment for Parkinson’s Disease?

While there is no cure for Parkinson’s disease, there are treatment options that can help manage the symptoms. They include medications, surgery, and lifestyle changes.

The most commonly used treatment for Young-Onset Parkinson’s disease is a class of drugs called dopamine agonists. These drugs help control the symptoms of the disease by mimicking or enhancing the effects of dopamine in your brain.

Parkinson’s is more than just numbers, prescriptions, and statistics — it affects the lives of individuals, families, and communities each year. Here is just one story of how dopamine agonists can affect someone's life with YOPD when they are not provided with clear information on a pre existing disposition to potential adverse drug reactions, an educated care team, and proactive intervention.

Nates Story: “My Life with Young-Onset Parkinson’s Disease”

Nate was diagnosed with Young-Onset Parkinson’s disease at age 26 in 2012. He was working as a 911 dispatcher when he noticed changes in his body and movement.

“I was experiencing severe anxiety and restlessness, the feeling of an internal tremor, and cramping in my hands. The anxiety began interfering with my abilities at work, and combined with burnout and personal pains that were exacerbating my ability to regulate my emotions, I decided to resign and seek out local medical professionals to provide me with some answers.”

He first went to a neurologist who prescribed Xanax and referred him to a Movement Disorder Specialist (MDS). The first MDS diagnosed Nate with Tourette Syndrome because of the “tics” he was experiencing.

However, Nate wasn't sold on this diagnosis. He researched his symptoms and found that they aligned more with Parkinson’s disease. He then went to another MDS in Detroit who agreed with his self-diagnosis and prescribed dopamine agonists.

His reaction?

“Dopamine what? Dopamine Agonists? What are those? These are a class of drugs that trick the brain into thinking it is receiving the dopamine it needs. Ok, cool. I’m having these symptoms because of a loss of dopamine, so more dopamine will make me feel better. Which it did.”

During his first year of treatment, Nate experienced a significant increase in his motor skills. He regained some creativity that he had lost due to his symptoms. The treatment was working.

Dopamine Agonists: Pros and Cons

Nate was experiencing the following benefits of dopamine agonists:

●     Better motor function

●     Fewer tics

●     Improved emotional stability

●     Restored creativity and cognition

Like any other medication, dopamine agonists have their share of cons that include:

●     Impulsive behavior (gambling, shopping addiction, and overeating)

●     Excessive daytime sleepiness

●     Headaches

●     Dizziness

●     Hallucinations

●     Nausea

Nate didn’t experience most of these common side effects. However, he did experience impulsive behavior, which is one of the most overlooked and misunderstood side effects of dopamine agonists.

In Nate’s case, he began to buy tools and build stuff for no reason. It was more than just a hobby; it was an obsession. This behavior is called punding: A disruptive compulsion that oftentimes goes unnoticed.

Nate’s punding led him to lose his new job. He was taken off dopamine agonists because of his increased impulsive behavior risk. Pretty soon, obsession changed to apathy.

Apathy When Coming Off Agonists

Nate began to experience severe feelings of apathy when coming off agonists.

“I was experiencing apathy once the agonists were out of my system. This is something many people with PD experience due to the loss of dopamine. I didn’t experience this for the first two years because the agonists put me in a state of repetitive behavior and productivity. I struggled with navigating this new emotional state of apathy (don’t care if I do, don’t care if I don’t) reflection on everything I encountered. It felt as if the only thing that could get me motivated to get out of bed and leave my house was the feeling of chasing that rush I had when on agonists when I was in search of a new tool.”

Even with the new feelings of apathy, Nate’s impulsive behavior was still there. It became a constant battle between apathetic versus obsessive behavioral shifts. He would continue to visit every garage sale in the area and buy tools he would never use.

His wife noticed the change in his behavior and asked him to clean up the mess he had made. Instead of cleaning up the mess, he hoarded even more tools. His wife asked her brother to talk to him about his hoarding problem. Yet, her brother never understood how Nate felt and assumed his behavior was a result of drug use.

The hoarding problem worsened, and Nate could no longer stop, even with no money. His turning point came when he was arrested for stealing tools from a local hardware store.

He knew that change was the only way for him to get out of the situation he was in.

Nate felt that his story would’ve gone differently if he had been aware of the behavioral patterns that he was falling into. He felt that with the proper management of his agonist medication he would've been able to stay in a creative state of mind and with a positive support system he could've channeled that motivation into something positive like exercise and healthy eating habits.

How to Help Someone With Young-Onset Parkinson’s Disease Who’s Exhibiting Behaviors of Excessive Hobbyism

Nate’s case is not an isolated incident. Many people with Young-Onset Parkinson’s disease may have encountered similar experiences. They feel alone and ashamed, and they don’t have the resources to get back on course.

But it doesn’t have to be this way. It all starts with awareness.

If you know someone with Young-Onset Parkinson’s disease, there are things you can do to help them manage their symptoms and live a more fulfilling life:

●     Do your research and learn as much as possible about the condition. Know what behavioral signs to be aware of. With the help of resources, you can help them find an interdisciplinary approach and care team that allows them to live a fulfilling life with PD.

●     Encourage them to seek professional help from a therapist. Therapists can help people with Young-Onset Parkinson’s disease understand the changes and how to manage their condition.

●     Share your story with others. Nate says, “I’m sharing my story because things could’ve been different for me during those years, they could have been better. With the internet, we can make these resources available by sharing our stories to help others.”

●     Refer them to coaches and communities for people with Parkinson’s disease. Experienced coaches can provide virtual exercises and movement training. A peer-based community is a great way to connect with people who’ve shared similar experiences and can provide advice and support.

Parkinson’s disease is challenging to live with. It truly affects each person differently. The best way to help is by offering a support system that provides education, encouragement, and understanding.

Motorvation Foundation for People With Parkinson’s Disease

Motorvation Foundation focuses on coaching, consulting, and offering a community for people with Parkinson’s and Young-Onset Parkinson’s disease.

Led by Darbe Schlosser and a team of experts, our foundation is dedicated to supporting individuals with Parkinson’s disease in these areas:

●     Bradykinesia - Focuses on improving slowness of movement.

●     Freezing of Gait - We teach strategies and provide tools for reducing the freezing of gait.

●     Cognitive Performance - A team-centered approach that aims to increase working memory potential.

We’re ready when you are. Reach out to us today, and learn more about the foundation and how we can help you.

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