Most people who have had the experience of hearing their physician speak the words “you have Parkinson’s Disease” will tell you they remember that moment all too clearly. Struck by intense feelings of fear and uncertainty, and often times knowing nothing about the disease, a newly diagnosed patient can be completely overwhelmed. Worse yet, the recollection of an uncle or family friend who had Parkinson’s Disease (PD) can be even more worrisome. However, knowing how someone lived with PD several decades ago cannot be compared with living with Parkinson’s today. Today’s outlook for PD patients is considerably brighter than it was even ten years ago with new medications, support networks, surgical treatments and active research.
If you are that person who has been given the diagnosis of Parkinson’s Disease, consider that diagnosis as a new state of being. In life, staying healthy is our goal, but eventually changes might occur that could cause our health to decline. Some of these changes we may or may not have control over. If these changes in your life include PD, prepare yourself to learn more about the disease. Remember, knowledge is power. PD is a condition that may try to control your life as much as you let it. Keeping a positive attitude will carry you far. Learning how to slow the progression of the disease by exercising and eating healthfully is the road to travel. If you are fortunate enough to have a supportive family or friends, embrace them. They are a gift.
Most importantly, try not to isolate yourself from others; stay in touch. Many patients will share the same challenges though symptoms will vary between cases. Whatever the symptoms, every patient will experience Parkinson’s in his/her own way. Attempt to find a local active PD support group that feels comfortable to you. Sharing your concerns and working to solve problems along with others is more beneficial than stressing alone. If you do not have a support group in your area, start a chat group with fellow patients and caregivers at a café or bookstore. Invite local PD care providers to come and share their expertise with your group.
Be careful if you use the Internet to research information. Be careful to connect with reputable sources. The National Parkinson Foundation offers New Onset PD education to help you understand what to expect with PD and to learn how to obtain the best treatment. Stay hopeful, and find a knowledgeable PD care team to give yourself the best possible chance at living better with PD.
Pat Weigel, RN
Honored to be President of the National Parkinson’s Foundation of Western New York