Receiving a diagnosis of Parkinson’s disease can be upsetting and frightening. It’s normal to rush to a worst-case scenario and feel paralyzed with despair. One of the best ways to avoid being overwhelmed by fear is to identify its underlying cause and address it.
To understand the specific fears of people living with Parkinson’s disease and their care partners, our support group conducted a survey among our members. The survey results revealed 10 fears, which we have divided into three areas: financial concerns, which we cover in this blog post, fear of physical symptoms, and fear of cognitive decline, which we cover in upcoming posts:
Our group took a closer look at three fears related to finances, health care, and care partners and crafted additional suggestions.
Parkinson’s disease can take a financial toll. If the person with the disease was in charge of the finances and can no longer manage, the other person may have a steep learning curve.
How to Face It: Share the day-to-day management of finances to prepare for the possibility of one of you not being able to participate in the future. Keep all your documents, including assets, debts, wills, medical power of attorney, and general power of attorney, in one handy place. If you don’t have these documents, draft them now. Prepare an agreed-upon monthly budget and a long-term view of your finances. Set aside savings for Parkinson’s-related expenses your neurologist predicts you may need in the future. Be sure to include possible home care, assisted living, and nursing home expenses. Don’t forget any long-term care insurance and possible VA benefits. If resources are tight, gather all family members to discuss the impact of the disease on your finances and future quality of life. Look into financial help for medications and ask your physicians to authorize use of generic drugs. Seek out local resources that can help you understand your unique options for home care and assisted living.
If you have multiple doctors for individual symptoms, who’s in charge? The care partner can play the crucial role of advocate in most of these steps.
How to Face It: Establish a patient-centered medical team that includes a movement disorder specialist, a primary care physician, other neurologists, other specialists, physical therapists, and technicians. The team should share notes and consult with each other. Your gastroenterologist may consult with your primary care physician or neurologist about any UTIs, for example. If your current medical provider doesn’t agree to share notes, get one who does. Ask one of the doctors on your team to monitor your prescriptions to avoid drug-drug interactions. Bring someone with you to all medical appointments to ask questions and take notes. If you are hospitalized, make sure the personnel know you have Parkinson’s and your symptoms. Make sure the staff is aware of your medication schedule and agrees to follow it. Ask your care partner to monitor your medications and advocate on your behalf. If you need anesthesia, discuss it with your doctor and anesthesiologist. Order the Parkinson’s Foundation safety kit.
Anger, anxiety, apathy, fatigue, and depression are frequent symptoms of Parkinson’s disease and can transform patients into very different and difficult people. When patients use these symptoms as weapons, they can drive a care partner away.
How to Face It: Make an effort to be the person you used to be. Sign up for a coping skills or anger management class. Meditate or seek spiritual guidance. Talk to your neurologist about possible medications for depression, apathy, or anxiety. Consider talking with a therapist or engage in couples therapy. Find new activities or passions you can share with your partner. Modify other activities. Walk instead of hike, for example, on shorter or less difficult terrain.
For advice about managing fears about physical problems, go to How to Manage Fears about Balance and Swallowing. For advice about managing cognitive decline, read Fear of Cognitive Decline and Other Worries in Parkinson’s.