When a Loved One Is Diagnosed With Parkinson's Disease

By Judy Santamaria MSPH

The incidence of Parkinson's disease, which is common in people over the age of 60, is expected to rise with the aging of our populations. Parkinson's disease (PD) is a progressive disorder of the nervous system that mainly affects movement. The primary symptoms of Parkinson's disease are tremor, rigidity or stiffness of the muscles, slow movement, loss of movement, and balance and walking problems.

When a sufferer first hears a Parkinson's diagnosis, the person may still be experiencing few physical symptoms. The good news is that the progression rate for the vast majority of individuals with PD is rather slow -- "measured in multiple decades for most," according to the National Parkinson Foundation. But for both the patient and their family, there can be significant emotional issues surrounding that early diagnosis, mainly fear of what the future will bring. Patients dread losing their independence and family caregivers panic, envisioning how they will be needed over time. While these emotions are common, caregivers should keep in mind that this is not an emergency. They should take time to learn about how the disease progresses and remember: in most cases it will be many years before intensive assistance is required.

Although there is no known cure for Parkinson's, there are drugs that can provide symptom relief for 10 to 15 years or longer. One difficulty with treating PD, and a major concern for PD caregivers, is that, as the disease progresses, a sufferer's response to medications may change. A dosage that was previously effective may become effective for shorter periods of time, so medications need to be continually reevaluated and adjusted. Parkinson's patients must carefully note their medication times and how their symptoms are affected so they can report this information to clinicians. This monitoring and dialogue with the healthcare provider is an important component of Parkinson's disease self-care and caregiving.

Side effects for medications can present challenges for both the caregiver and the patient. For example, commonly reported side effects associated with a class of drugs called dopamine agonists include impulse control disorders such as gambling, hoarding, or obsession with pornography. Caregivers may be embarrassed or uncomfortable talking with a professional about these behavioral side effects. It may help to keep in mind that these are well-reported medical issues and that the behaviors can be controlled with a change in medication.

In the caregiver support program I manage at the Visiting Nurse Service of New York, we frequently hear of caregivers struggling with the medications for Parkinson's. They understand the importance of adhering to the tight medication schedule, but few have prior training and frankly, it can be confusing to manage so many medications with different dosages and timing. It can get particularly difficult if patient has to spend time in the hospital, which interrupts the schedule and often results in additions and changes to the medications.

It's important to remember that since Parkinson's disease typically progresses slowly, family caregivers have time to learn about the disease, and prepare for the future. Talk openly with your doctor, and ideally, consult with a Movement Disorder Specialist, a neurologist who is aware of the latest treatment protocols available. There are certain questions you can ask early to gain more information:

What stage is the illness in now?

How fast can we expect the illness to progress?

Will my family member be able to maintain the work/hobbies/sports he or she is doing now?

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When a Loved One Is Diagnosed With Parkinson's Disease