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Early Onset Parkinson’s: Having the Disease Under 50 Years of Age

Parkinson’s disease is associated with aging, yet almost 20% of people diagnosed are under 50 years of age. This is referred to as early onset Parkinson’s. Although symptoms are similar to those of seniors with the disease, the challenges are different.

Parkinson’s disease affects younger people differently. The pressure of their professional lives, children’s education and financial commitments are all factors that add to the weight of the diagnosis. You now need to pay more attention to yourself and your health. 

The causes, development and treatments of early onset Parkinson’s are not the same as those offered to seniors. Your young brain is better able to create new neuronal connections that can compensate, at some level, for the loss of neurons associated with the disease.

In young people, the disease can change their self-perception or that of others. You can change this by informing yourself and educating those around you.

The development of Parkinson’s disease is linked to a combination of genetic predispositions and environmental factors. In early forms of the disease, the genetic component appears to play a greater role. 

Some genetic mutations (SNCA, PARK2, PINK1, LRRK2) appear to increase risks of developing the disease at a young age. Your neurologist may suggest genetic testing to determine transmission risks in your family. Having the disease and your children being carriers of these genetic mutations does not necessarily mean they will have the disease as well.

People diagnosed young may experience symptoms identical to those of seniors. On the other hand, this type of Parkinson’s has some specific characteristics:  

  • The progression of the disease is slower (i.e. symptoms appear more slowly)
  • Life expectancy of patients is longer 
  • Medication is more effective but can cause:
    1. More frequent and rapid dyskinesias
  • Quicker motor fluctuations
  • Patients are more likely to develop
    1. Depression
    2. Focal dystonia (i.e. abnormal contractions or positioning of a body part)
  • Cognitive troubles are less likely

Being diagnosed with Parkinson’s disease at a young age is a particular challenge. You will have to learn to cope with the disease early in your life and you will live with it longer. The disease will add to your family or parental responsibilities, financial responsibilities, and is likely change your career. Despite challenges, your young age gives you greater resilience than seniors who may see the illness as the last chapter of their lives.

Your life isn’t over. Once you’ve accepted the diagnosis, you will have to adapt to new constraints and prioritize what is really important to you. Talk about your new plans with your loved ones. They can help you prioritize and adapt according to the support they can provide. 

To better cope with the disease, you can also join support groups near you or online groups dedicated to people diagnosed at a young age.

To this day, there is no cure for Parkinson’s disease. Existing treatments can help alleviate symptoms, but the therapeutic strategy can be different in young people with Parkinson’s. In fact, there are more treatment options available to young people than to seniors but the stakes are twofold:

  • When to begin taking medication 
  • Which medication to start with

These issues need to be taken into consideration as young people tend to develop dyskinesias more rapidly and more frequently with levodopa.

For a long time, disease management guidelines delayed the prescription of levodopa in order to delay the onset of side effects and preserve the therapeutic effect for later. Today, it is increasingly accepted that early treatment allows patients to take full advantage of the effectiveness of their medication. 

Your doctor may also decide to delay medicinal treatment or start with a medication other than levodopa depending on your situation. There are multiple medications to alleviate Parkinson’s disease symptoms.  

If medicinal treatments are not effective with time, people living with early onset Parkinson’s can undergo a deep brain stimulation surgery. Discuss your options with your doctor.

Parkinson’s disease does not necessarily lead to early retirement. Depending on your particular situation, you may be able to continue working several years after your diagnosis. However, adjustments will be necessary to continue performing your job well while limiting stress: 

  • Review key responsibilities
  • Divide each area into specific tasks
  • Determine if your symptoms will interfere with your ability to perform each task
  • Look for new ways of doing things
  • Set a schedule that allows you to tackle difficult or demanding tasks when you are at your best
  • Set times for time-consuming tasks

You are not required by law to disclose your medical condition to your employer, provided you are able to perform your duties appropriately. However, informing your employer will allow you to request accommodations at work to meet your particular needs.

If you are reluctant to inform your employer out of fear of being discriminated against due to your illness, know that you have rights. Inform yourself of labour rights of people with disorders to know your rights and the resources available.

Having children and educating them is possible even with a neurodegenerative disease such as Parkinson’s.

In scientific literature, very few cases of pregnancies in patients living with Parkinson’s disease have been described. 

  • Pregnant women taking levodopa can continue treatment during pregnancy
  • Amantadine is not recommended during pregnancy due to cases of heart defects in babies
  • Some women have noticed an improvement of symptoms during pregnancy whereas others did not
  • Breastfeeding is not recommended when taking antiparkinson medication due to the limited research available. Additionally, regular doses of dopaminergic agonists suppress lactation.

Discuss your pregnancy plan with your doctor, who can provide you with more information regarding the effects of antiparkinson medication on the development of the fetus and how pregnancy can impact the progression of Parkinson’s disease.

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