Early-onset Parkinson’s disease (PD) is defined as a diagnosis of PD before the age of 40, though some studies include subjects up to the age of 50 (Post et al., 2020). Early-onset Parkinson’s disease is subdivided into two different categories: juvenile parkinsonism, affecting those under 21 years of age, and Young Onset Parkinson’s Disease (YOPD), which includes those diagnosed from the ages of 21 to 40 (or sometimes 50, as mentioned above). Differences in clinical features, pathology, and genetics support distinguishing between juvenile parkinsonism and YOPD (Post et al., 2020). Approximately 10-20% of individuals are diagnosed with PD before the age of 50; of this group, 50% are diagnosed before age 40 (American Parkinson Disease Association, n.d.).

There is some evidence that YOPD may be linked to genetics, especially in families who experience PD across multiple generations – though it is important to note that many individuals get early-onset Parkinson’s disease without any family history at all. People with both early-onset Parkinson’s and a family history of the disease tend to have specific PD-associated genes like SNCA, PARK2, PINK1, and LRRK2. Recent research revealed that 65% of those diagnosed with PD before the age of 20 and 32% between ages 20 and 30 had genetic mutations linked to a higher risk of the disease (Parkinson’s Foundation, n.d.). For many others, it is likely a combination of genetics and environmental factors that lead to PD’s development (American Parkinson Disease Association, n.d.).

 

Diagnosis

Many doctors may not consider Parkinson’s disease as a potential diagnosis for their younger patients, erroneously believing that the condition only affects older people. Because of this, those with YOPD may take up more medical resources as a result of unnecessary additional tests and visits to one or multiple neurologists. Ultimately, they may face delays in their diagnosis and treatment (Rana et al., 2022).

One recent study examined the medical records preceding the diagnosis of a group of 337 PD patients. Each person with YOPD was paired with an individual who experienced a more typical age of PD onset, chosen based on matching criteria of gender, presence of tremors, and PD stage, for comparative purposes. The study revealed that it took the YOPD group an average of 15 months longer to receive their diagnosis (Rana et al., 2022).

 

Symptoms

Dystonia

Individuals with YOPD may experience dystonia (painful, involuntary muscle contractions that cause twisting or repetitive movements) in the early stages of the disease, even before starting drug treatment. People with YOPD may even report dystonia as one of their first symptoms of Parkinson’s. When dystonia is triggered by exercise in people aged 21 or older, Parkinson’s disease should always be considered and investigated (Post et al., 2020).

How people with YOPD experience this symptom is different from those who develop Parkinson’s at an older age, as this group primarily experiences dystonia as a side effect of levodopa, or as part of their advancing disease (Post et al., 2020).

Levodopa-induced Dyskinesias

The use of the antiparkinsonian medication levodopa is more likely to cause levodopa-induced dyskinesias in people with YOPD, though researchers are not entirely sure as to why this is. This motor complication is an important reason why many doctors may prefer to start their YOPD patients on other classes of drugs first, such as dopamine agonists and MAO-B-inhibitors (Post et al., 2020).

The choice of medication is always a balancing act. It depends on improving movement issues, which is typically better done with levodopa compared to dopamine agonists or MAO-B inhibitors. However, for people with YOPD, levodopa carries a higher risk of motor complications. Meanwhile, dopamine agonists pose a higher risk of neuropsychiatric problems, such as impulse control disorders, particularly in younger males (Post et al., 2020). Always make sure to discuss your concerns, including any pros and cons of medications, with your doctor or neurologist.

Anxiety and Depression

Mental health conditions, like anxiety and depression, are common in people with YOPD. Those with earlier-onset disease are likely in different stages of life than those diagnosed later. They may still be employed or at the peak of their career. Many have families, including small children. As a result of these factors, people with YOPD rate their quality of life as lower when compared to older individuals with the same disease severity (Calne et al., 2008).

 

Disease Progression

People with YOPD tend to experience a much slower progression of the disease and live longer with the condition. Their disease severity may be milder, with less incidence of cognitive issues, such as dementia and memory problems (Johns Hopkins Medicine, n.d.). People with YOPD may not need treatment initially but will need good medical care throughout their lives.

 

Challenges in Daily Life

Due to the age of onset, people with YOPD are more likely to have marriage and employment difficulties and may have to retire early due to disability. If the income of the person with YOPD is vital to the family budget, the family may face financial stress, which has more potential for causing marital strain. When paired with chronic illness, financial stress may be even more reason for couples affected by YOPD to look after their marriage and themselves.

Career and Identity

People with YOPD may have concerns relating to employment and careers. Career and finances contribute greatly to feelings of self-worth and identity. The decision to leave work is complicated by numerous factors, including:

  • severity of symptoms
  • amount of support in the workplace
  • ability to delegate tasks if necessary
  • need for precise hand movements
  • need for manual labour and shift work
  • safety issues and levels of fatigue
  • voice volume and quality
  • employment insurance benefit plans

 

Sexual and Reproductive Health

People with YOPD are affected at an age when they may expect, perhaps more than at other times, to be sexually active. The appearance of a person with Parkinson’s (tremor, rigidity, loss of facial expression, and dyskinesia), can have an impact not only on their self-esteem and their ability to feel sexually attractive, but also on their partner, who may find these changes disconcerting.

Sexual function may not form part of a routine neurological examination, and the patient may have to be the one to mention it. While some find talking about sexuality challenging, it is important to do so, as there can be many avenues of treatment and therapy to explore, including counselling or medication.

Menstruation and Menopause

Regarding menstruation, studies indicate that over 90% of women with Parkinson’s encounter worsened symptoms before and during their periods, often experiencing increased pain and bleeding after developing PD (Odin, 2018). In such instances, healthcare providers prioritize managing premenstrual syndrome (PMS) symptoms, occasionally suggesting additional doses of PD medications, as these drugs might be less effective during menstruation (Odin, 2018). If symptoms significantly impact an individual’s quality of life, treatment options, such as hormone therapy, surgical intervention, or radiotherapy to induce menopause, may be considered.

It’s crucial to note that common menopausal symptoms like fatigue, depression, sweating, and reduced sexual desire can sometimes be mistaken for PD symptoms. Maintaining open communication with your doctor is essential to determine the most suitable treatment for your concerns (Odin, 2018).

Pregnancy

Pregnancy may worsen symptoms and may have a negative impact on the course of the illness. You may have uncertainty regarding the effects of Parkinson’s medications during pregnancy, and the drug levels found in breast milk. To date, there is no proof indicating that women with PD experience a greater occurrence of birth or fetal issues (Odin, 2018). Although some Parkinson’s symptoms like balance problems, slow movement, fatigue, and nausea could influence pregnancy, there’s no evidence suggesting they pose severe or life-threatening risks. Furthermore, widely used PD medications have been administered during pregnancies without reported harmful effects (Odin, 2018). However, it’s essential to consult your doctor for the best possible care if you’re pregnant or planning to conceive. Deciding to become pregnant when living with YOPD requires very careful consideration.

 

Sources

American Parkinson Disease Association (n.d). What is early onset Parkinson’s disease? https://www.apdaparkinson.org/what-is-parkinsons/early-onset-parkinsons-disease

Calne, S. M., Lidstone, S. C., & Kumar, A. (2008). Psychosocial issues in young-onset Parkinson’s disease: Current research and challenges. Parkinsonism & Related Disorders, 14(2), 143-150. https://doi.org/10.1016/j.parkreldis.2007.07.005

Johns Hopkins Medicine (n.d.). Young-Onset Parkinson’s Disease. https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/youngonset-parkinsons-disease

Odin, P. (2018). Women and Parkinson’s. European Parkinson’s Disease Association. https://www.epda.eu.com/living-well/wellbeing/personal-health/womenand-parkinsons

Parkinson’s Foundation (n.d.). Young-Onset Parkinson’s. https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/young-onset-parkinsons

Post, B., van den Heuvel, L., van Prooije, T., van Ruissen, X., van de Warrenburg, B., & Nonnekes, J. (2020). Young Onset Parkinson’s Disease: A Modern and Tailored Approach. Journal of Parkinson’s Disease, 10(Suppl 1), S29–S36. https://doi.org/10.3233/JPD-202135

Rana, A. Q., Siddiqui, I., & Yousuf, M. S. (2012). Challenges in diagnosis of young onset Parkinson’s disease. Journal of the Neurological Sciences, 323(1–2), 113-116. https://doi.org/10.1016/j.jns.2012.08.031 


Last updated: January 4, 2024