While a Parkinson’s diagnosis can be devastating at any time of life, being diagnosed with the disease at an early age can significantly impact a young person’s quality of life and that of their family. Currently, there is no cure for the disease.
Because doctors most often diagnose Parkinson’s disease in people around 60 years old, it is likely that a much younger person with early-onset Parkinson’s disease could remain undiagnosed or misdiagnosed for some time.
Early-onset Parkinson’s may also progress differently to the more traditional form of the disease. Being aware of symptoms and risk factors may help a person get the treatments they need as early as possible.
Early-onset Parkinson’s definition
People with early-onset Parkinson’s may not initially experience some of the symptoms associated with the disease.
According to the American Parkinson Disease Association, an estimated 10 to 20 percent of those with Parkinson’s disease are diagnosed at an early age. This amounts to anywhere from 6,000 to 12,000 people under 50 years old in the United States.
Many people with early-onset Parkinson’s will not experience some of the symptoms associated with the disease for many years. People diagnosed with Parkinson’s at an older age tend to progress to these symptoms more quickly.
These symptoms include:
- memory loss
- problems with balance
However, people with early-onset Parkinson’s are more likely to experience problems with involuntary movements — jerking or other tics that a person has no control over. These movements may be due to the disease itself or a result of the side effects of a medicine called levodopa, which is commonly prescribed to treat the disease.
For this reason, some doctors will prescribe different medications to treat early-onset Parkinson’s.
In addition to differences in symptoms and treatments, those diagnosed with early-onset Parkinson’s disease also face different challenges in living with the disease. For example, they may be parents of young children or just starting out in their careers without insurance or savings for medical costs.
Signs and symptoms
According to an article in the journal Translational Neurodegeneration, changes in the brain begin to occur an estimated 6 years before a person experiences symptoms of Parkinson’s.
Parkinson’s disease causes a reduction of dopamine in the brain, which may be responsible for movement-related symptoms. These symptoms are similar in people diagnosed with both early-onset Parkinson’s disease and those diagnosed at a later age.
Examples of movement-related symptoms include:
- tremors, or small, shaking movements of the hands, arms, legs, jaw, or face
- stiffness or rigidity of the arms, legs, or trunk
- slow, stiff movements
- affected balance
- affected coordination
Parkinson’s disease can also cause other symptoms besides impaired movement. These include:
- changes to thinking or memory
- problems going to the bathroom, such as constipation or urinary incontinence
- sleeping problems
A brain MRI scan may be used to rule out other conditions.
Currently, no specific test exists to help a doctor diagnose Parkinson’s disease. Diagnosis often involves ruling out other medical conditions that can cause similar effects. Doctors may also compare a person’s symptoms with those of a younger person already diagnosed with Parkinson’s disease.
Sometimes, a doctor may ask a person to keep a diary of their symptoms. Tracking these symptoms over time may help a doctor to identify a Parkinson’s-like pattern of symptoms.
Examples of diagnostic testing to rule out other conditions include:
- imaging scans of the brain to test for brain abnormalities, such as tumors
- blood testing to identify the presence of bacterial or viral illnesses, or cancers
Sometimes, a doctor might prescribe medications that are typically used to treat Parkinson’s disease to see if a person’s symptoms improve. If a person’s symptoms do improve, this might suggest that a person has Parkinson’s disease.
Traditionally, the treatment approach to early-onset Parkinson’s has been to delay prescribing medications until a person’s symptoms start to affect their daily life significantly.
However, the Parkinson’s medication levodopa and its variants, such as Carbidopa-levodopa, are known to cause increased symptoms in a younger person with Parkinson’s disease. As a result, doctors may prescribe different medications, such as:
- MAO-B inhibitors, such as selegiline (Eldepryl)
- dopamine agonists, such as ropinirole (Requip)
These drugs are associated with fewer side effects in young people than levodopa.
Another therapy that has been shown to help people with early-onset Parkinson’s is deep brain stimulation.
This treatment involves implanting a small electrical device similar to a pacemaker into an area of the brain involved in movement. A special programmer will adjust the electrical stimulation levels to help a person have better motor control related to their Parkinson’s disease.
Living with early-onset Parkinson’s
A support group may be recommended to help a person live better with Parkinson’s disease.
Early-onset Parkinson’s disease can affect how a person moves and thinks. These effects can be understandably life-changing.
When a person is first diagnosed with early-onset Parkinson’s, they might want to try some of the following steps to help them live better with Parkinson’s disease:
- Educating themselves about the disease, its symptoms, and treatments.
- Identifying a medical team to help care for them. This could include a primary care physician, neurologist, psychiatrist, and physical therapist.
- Discussing the diagnosis with their boss or colleagues and creating a plan to keep them working for as long as they desire.
- Finding support groups, both in person and online, to support them.
- Identifying caregivers and loved ones who can offer encouragement and a helping hand.
While doctors do not know exactly what causes Parkinson’s and early-onset Parkinson’s, they do believe that there is a genetic component to the disease. This is especially true for those with early-onset Parkinson’s disease.
As a result, a person living with early onset Parkinson’s may wish to see a genetic counselor if they are thinking of having children.
If recommended, a counselor may test for the presence of genes linked to early-onset Parkinson’s disease, such as SNCA, PARK2, PINK1, and LRRK2.
Tips for caregivers
Caregiving for a loved one with early-onset Parkinson’s can be difficult because the person is young and often unaccustomed to the idea of needing extra help.
As the disease progresses more slowly in a person with early-onset Parkinson’s, it is possible that a loved one may not need much assistance with medical appointments, medication management, or other disease-related tasks for some time.
However, a person with early-onset Parkinson’s will often need moral and personal support. Some of the ways a caregiver can do this include:
- Educating themselves about Parkinson’s disease, and specifically early-onset Parkinson’s disease. Learning about symptoms, available treatments, and how Parkinson’s disease could impact a loved one’s daily life.
- Asking their loved one what they can do, and making themselves available when possible to help.
- Providing encouragement and support. This can just mean talking about topics other than the person’s illness and engaging in stress-relieving activities.
- Joining a support group for caregivers, specifically, caregivers for family members with Parkinson’s.
In addition to these activities, caregivers may wish to discuss important care decisions with a person with early-onset Parkinson’s.
While these issues can be difficult to discuss, having the conversations before a person’s disease has progressed significantly can ensure that a person’s wishes are fulfilled. This can include:
- Defining how an individual wants their family to participate in their caregiving.
- Engaging with community resources to prepare an advanced directive or power of attorney for healthcare should a person need assistance in making healthcare decisions.
- Making a list of a person’s physicians, insurance policies, or medications.
Having this information available and updated regularly can help a caregiver have all the required information to hand should a loved one require more intensive medical attention.
Every day, researchers around the globe are working to find treatments to help slow the progression and effects of early-onset Parkinson’s and Parkinson’s disease in general.
While no cure currently exists, there are some medications that can reduce symptoms and help a person maintain their mobility.
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