After Alzheimer’s disease, Parkinson’s disease (PD) is the most common progressive neurological disorder. Caring for someone who has a degenerative disorder can be physically and emotionally challenging, for both the patient and the caregiver. It can also be rewarding to help someone maintain dignity and independence for as long as possible.
Even though there may have been years of frustration, suspecting something was “not right” and visiting doctors to find answers, the diagnosis of PD is a shock. Initially, the patient may have symptoms that seem unrelated to the tremors or stiffness that are visible signs of PD: loss of smell, extreme fatigue, sleep problems, and depression may require your attention and support. PD is a complex condition that is different for each person.
During the early phase of PD, it’s important to do as much you can do to prepare for the future:
1. Learn as much as you can about the disease. Information is essential for making appropriate health care decisions going forward. You also want to learn how PD affects the brain and body, so you know what to look for. You’re considered part of the healthcare team, so your observations will be valuable.
2. Understand the medications and their side effects. Symptoms show up after about 50% of the brain cells producing the necessary chemical that allows nerve cells to “communicate” have been destroyed. This chemical is called dopamine. Once PD has been diagnosed, medications containing dopamine can slow the disease for 10-15 years.
3. If it’s your loved one who has been diagnosed with PD, decide how you want to share the news with family and friends. Because of actor Michael J. Fox’s public battle with his PD, awareness is higher than ever. However, you’ll still have to educate others and be ready to fend off advice about miracle cures and the latest online discoveries.
4. Find and join a PD Support Group. There are groups for patients and caregivers. This is the time to meet others who share your new reality and to develop relationships that will be important for years to come.
5. Begin to think about making your home safe. PD can progress slowly, but at some point, modifications will be necessary to minimize falls and to allow for independence. Ask an experienced caregiver or a member of your healthcare team for ideas or suggestions.
6. Decide right now to make time for yourself. Self-care is necessary if you want to stay well and be able to provide care. Evaluate your work-life balance. Schedule exercise and social time into your calendar. A healthy diet is non-negotiable, so start today. Caregivers are notorious for neglecting themselves and ending up with their own chronic illnesses. Don’t let it happen to you!
Parkinson’s disease is serious and currently without a cure. Honest discussions and early planning can help everyone adapt and move forward together to maintain the best quality of life for as long as possible.
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