Parkinson’s disease is a disorder that primarily affects a person’s movements and mood. It gets worse over time and happens when specific nerve cells in the brain stop making enough dopamine, a chemical that helps create smooth muscle movement. When we think of Parkinson’s disease, many people associate it with something that happens to older people. For the most part, they’re right. Parkinson’s disease is usually diagnosed in people older than 65. However, about 1 in 10 cases are diagnosed before the age of 45, and in these cases, it is referred to as young-onset Parkinson’s disease (YOPD).
I was reminded of this condition just a few weeks ago. One of the things I like to do on cold winter nights is to cuddle up in front of the TV and binge-watch some of my favorite old series. This year, I’ve been going through The Good Wife from its beginning, and I recently got to season two, episode 6 (titled the Poisoned Pill), which was especially interesting for me because it deals with a “fictional” court case against a pharmaceutical company. In this episode, there’s a guest appearance by the popular actor Michael J. Fox, who plays a lawyer with a serious neurological disorder, which he blatantly exaggerates to get the jury on his side. What the story didn’t tell is that Michael Fox is probably the world’s most famous example of YOPD. He was diagnosed with the condition at the age of 29, when he was at the very pinnacle of fame after a series of runaway hit movies. In The Good Wife, Fox can be seen struggling to control his body movements, unable to sit still and with most of the common symptoms of Parkinson’s disease. Fox is also famous for his pioneering work in later life to bring attention to the whole subject of PD through the Michael J Fox Foundation for Parkinson’s Research
The symptoms of Parkinson’s and how quickly they progress can be very different for each person. People with YOPD may handle their symptoms differently and face different challenges with work and family life compared to those who are diagnosed later in life. It’s also common for them to have a longer delay before diagnosis because early symptoms, like stiffness in the shoulder or arm, can be mistaken for sports injuries.
What are the symptoms of young-onset Parkinson’s disease?
Parkinson’s disease can cause various symptoms. These can include:
- Shaking or tremors, usually starting on one side of the body while at rest
- Stiff muscles, which may cause pain and trouble with posture or movement
- Slower movements, making everyday tasks like dressing or cooking more difficult
- Posture changes are common
- Trouble with balance
- Slower speech
- Small, hard-to-read handwriting
- Difficulty swallowing
- Low blood pressure, especially when moving from a lying position to a sitting or standing position
- Trouble sleeping, sleep-talking, or acting out dreams
- Constipation
- Reduced sense of smell
- Anxiety or depression
- Producing more saliva than usual
Early signs may include:
- Feeling very tired even after resting
- Slight sadness or feeling down
- Trouble sitting still
- Pain in a specific muscle area
People with early-onset Parkinson’s disease are more likely to have dystonia, which causes muscles to tighten and leads to unusual body positions, like a twisted foot. They are also more likely to get dyskinesia, which causes uncontrolled, jerky movements.Â
How is Young-onset Parkinson’s Disease (YOPD) diagnosed?
YOPD is diagnosed in the same way as regular Parkinson’s. It can be hard to diagnose, especially in the early stages. There isn’t a single test that can confirm it. Doctors usually talk to patients about their symptoms and do a physical exam. They may also check if the patient’s condition improves after taking medicine that boosts dopamine in the brain. To make sure the symptoms aren’t caused by something else, doctors might order brain scans like MRI or CT scans. Blood tests might also be done to rule out other illnesses.
What are the causes of YOPD?
Parkinson’s disease is caused by a mix of genetic and environmental factors, which affect people differently. For younger individuals, especially those with several family members who have Parkinson’s, genetics might have a bigger impact.
How is YOPD treated?
The recommended ways to manage Parkinson’s symptoms are generally the same, no matter when a person is diagnosed. Younger people might decide to delay starting medication or use drugs other than levodopa if their symptoms are mild and don’t affect their daily activities like work or social life. They might begin with an MAO-B inhibitor, a dopamine agonist, or an anticholinergic drug, especially if tremors are a major issue.
- MAO-B inhibitors such as Azilect slow down the breakdown of dopamine in the brain, helping to increase and prolong dopamine activity, which can alleviate Parkinson’s symptoms.
- Dopamine agonists like Neupro, Mirapex, and Requip mimic the effects of dopamine in the brain, helping to reduce motor symptoms by activating dopamine receptors directly. Â
- Anticholinergic drugs such as Kemadrin and Akineton help to reduce tremors by balancing the levels of acetylcholine, a neurotransmitter that can become overactive in Parkinson’s disease.
There is no agreement yet on the best time to start using dopamine boosters such as Stalevo and Sinemet CR. Some doctors believe that starting early is better because it helps control symptoms, improves quality of life, and keeps people active longer. Others prefer to wait in hopes of delaying side effects like involuntary movements (dyskinesia). Working with a movement disorder specialist can help determine which medication to take and when to start it.
Considerations specific to YOPD
People with YOPD may be more inclined to think about how the disease might affect their future since they are likely to live with it for a longer time. Many worry about how it could impact their personal lives, families, and work responsibilities.
Employment
How long someone can keep working after a diagnosis depends on their symptoms, how serious they are, and the type of job they have. Many people are able to keep working for a long time. However, it’s a good idea to have a backup plan, like adjusting work hours, considering early retirement, or even exploring a new career. Deciding if or when to share the diagnosis with coworkers or employers is a personal choice. It can help to have a plan for whom to tell, how to talk about it, and how to deal with their reactions.
Parenting
Parents might feel concerned about taking care of young children while managing the physical and financial challenges of Parkinson’s. They may also worry about whether their kids are at higher risk of getting the disease and how to explain the diagnosis. Doing activities as a family can help, like finding answers to kids’ questions together, working on a school project about Parkinson’s, or raising money for research.
Relationships and Marriage
Parkinson’s can affect relationships with partners and spouses. It helps to talk openly about worries for the future and deal with symptoms as they come up. Good communication and flexibility, which are essential in any relationship, are even more critical when dealing with Parkinson’s together.
When should I see my doctor?
If someone notices shaking, stiff muscles, trouble balancing, or slower movements, they should see a doctor. Since Parkinson’s can be hard to diagnose, the doctor might send them to a specialist like a neurologist or geriatrician for further tests and evaluation.
FAQs
Can people with Parkinson’s disease work?
Yes, but staying safe and productive may require small changes. This could mean adjusting the workspace, having flexible hours, or changing medications as needed.
How does Parkinson’s disease affect mental health?
About half of people with Parkinson’s experience anxiety or depression, which can impact their quality of life. Some may also deal with apathy, where they lose interest in activities or people. This isn’t laziness; it’s caused by low dopamine levels in the brain. Mental health issues should be treated separately from movement symptoms. If someone notices changes in their mental health, they should talk to a doctor, as there are treatments that can help.
How does Parkinson’s disease affect sex?
Parkinson’s can lead to changes in sexual health, like lower interest, difficulties during intimacy, or less satisfaction. For some, medications that boost dopamine might cause an increase in sexual thoughts or desires. If this becomes an issue, they should talk to a doctor or consider seeing a counselor for guidance.
What is the life expectancy of someone with Parkinson’s disease?
People with Parkinson’s disease typically live as long as those without it. However, factors like age at diagnosis, ethnicity, and the quality of treatment can influence outcomes.
