Diagnosis in Young Onset Parkinson’s

Many young onset patients experience delay in diagnosis given the uncommon age and often different symptoms as outlined below. Similar to late onset patients, the diagnosis is made based on history and clinical examination. There are still no proven diagnostic tests that can definitively diagnose PD. In some cases, other mimics of Parkinson’s need to be evaluated for given their increased likelihood in younger patients. Given the complexities, it is important to seek evaluation by a neurologist and in many cases a movement disorder specialist.

In addition, young onset patients are more likely to have a genetic risk factor or cause to their symptoms, especially if there is a family history. Genetic testing can be considered, but should always be done after consulting a physician and in many cases a genetic counselor.

Common signs of Young Onset Parkinson’s

Symptoms of Young Onset Parkinson’s are often different from Parkinson’s that develops later in life. In young onset Parkinson’s the first symptom is often dystonia: involuntary muscle contractions that may cause stiffness, twisting and repetitive motions in the limbs. Leg or foot dystonia is particularly common affecting up to 50 percent of diagnosed young people.

Many of the more common signs of Parkinson’s in the elderly are less common early on in young onset Parkinson’s disease, such as tremors, cognitive problems including memory loss and dementia, and loss of balance and coordination.

Treatment of Young Onset Parkinson’s Disease

Young onset patients face unique circumstances regarding medical and surgical treatments of Parkinson’s disease. In general, the same medications used to treat late onset Parkinson’s patients are used for treatment of young onset patients. However, younger patients are at increased risk for certain side effects compared to elderly patients, most notably excess involuntary movements often of the limbs called dyskinesias with use of levodopa. Therefore, a personalized and individualized approach using other medications instead of, or in conjunction with levodopa is often used to mitigate side effects.

Other important considerations:

Young patients may also need treatments to target their unique symptoms such as dystonia. Common treatments include medications that help relax the overactive muscles or botulinum toxin injections.

Young patients are often better candidates for DBS (Deep Brain Stimulation) and other new surgical techniques and medicines because they are less likely to have other age-related diseases. Consult a movement disorder specialist to determine if you are a candidate for advanced surgical and medical treatments.

Other factors to consider include:

  • Delay to diagnosis and need to often assess for mimics of Parkinson’s
  • Young onset patients are more likely to have a genetic cause to their symptoms.
  • They will often experience different symptoms as outlined above
  • Different responses to medications compared to late onset PD patients.
  • The effect on career/job performance, financial burden, and coping with long-term illness

Unique Challenges for Young Onset Parkinson’s Disease

Apart from the physical challenges, people with young onset Parkinson’s face unique issues related to family, career, finances and living long-term with a potentially disabling condition. Young persons with PD may ask the following questions:

How will the disease affect my employment?

It is estimated that 25-35% of people diagnosed with Parkinson’s are still in the workforce. Some continue full or part-time work for many years. While the diagnosis of Parkinson’s doesn’t necessarily call for early retirement, it does require that you look at how you can best do your job and minimize work-related stress. Check our some employment considerations you should take into account.

What steps should I take in regard to financial planning?

Long-term financial planning is important for everyone — but it is essential if you are coping with the expense of a chronic illness, such as Parkinson’s disease. Assume that Parkinson’s will lead to increasing disability. There are professional financial managers and lawyers that provide financial planning for people with chronic illnesses. Visit the financial planning page to learn more.

What will my family life be like now that I have PD?

An important part of living with PD is to surround yourself with support. Avoid isolating yourself, your family, your friends and you community. Reach out, interact socially, seek help and find others with similar experiences.

Should I tell my employer?

The issue of when and what to tell your employer is very much a personal decision depending upon your condition and personality as well as your employment situation. In many states, it is a legal requirement for employers to accommodate a person with a disability (be sure to check your state and local laws).

Talking with other people the same age, with the same condition, can be very helpful. Consider joining the young onset support group