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?

• What drugs/treatments do you recommend?

• Are there lifestyle changes you suggest (such as diet, sleep, etc.)?

• Can you recommend a Movement Disorder Specialist?

• Where can we get support from others in this situation?

As is common in many caregiving situations, it’s crucial that caregivers look after their own needs as well as those of their loved one. If you become overwhelmed with helping another, you will be less available for the long-term. Certain simple steps, common to many caregiving situations, can be an important foundation for sustaining quality of life for everyone in the family:

• Take time to learn about the disease, and be prepared.

• Develop open communication with health professionals–they are there to help.

• Don’t forget to take care of your health, and visit your own doctor for regular check-ups.

• Recognize that you can’t do it all alone, that no one can! Accept support from others and don’t be reluctant to ask for help.

• Be open and understanding with your loved one–allow your relationship to change. You may find that the “new normal” is just as good, if not better, than the old one.

• Encourage social engagement and physical activity in your loved one, and allow him or her to be as independent as possible.

As with many situations in life, taking action can go a long way in helping you cope. The Michael J. Fox Foundation for Parkinson’s Research has information about how both Parkinson’s patients and their non-diagnosed family members can help move science forward by participating in a clinical trial. That might not be an option that’s right for everyone, but for some, knowing that you’re helping to bring us all closer to a future cure could be a very meaningful coping strategy.

Reaching out to others who share your concerns may be the single best thing you can do as a family caregiver. There are many helpful forums that can help educate and support those touched by Parkinson’s. The National Parkinson Foundation provides links to local support groups and online chat rooms for Parkinson’s caregivers. Below I’ve listed several resources where family caregivers can gain strength in learning about the disease and in connecting with others–please share with us any resources you have found to be helpful to add to this short list.

Michael J. Fox Foundation for Parkinson’s Research

Parkinson’s Disease Foundation

National Parkinson Foundation

Family Caregiver Alliance

Judy Santamaria, MSPH, is an expert in family caregiving and a consultant to the Visiting Nurse Service of New York. She has extensive experience in the needs of caregivers and has provided community education for family caregivers, nursing students, and interested healthcare professionals throughout the New York metropolitan area.

Ms. Santamaria has managed a team of market researchers at the Health Care Advisory Board in Washington, D.C. and has experience in operations analysis, project planning, budgeting, management and market research. In addition to her writing about family caregiving, she has published articles on the future of the paraprofessional workforce and the establishment of a national research center in home care. She holds a Master’s Degree in Health Policy and Management from the Harvard School of Public Health.

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