Parkinson’s disease is a neurodegenerative, progressive disease, meaning it gets worse over time. As with all cases of PD, each individual’s rate of progression and symptom severity will be different and unique to the person. A PD diagnosis brings on a host of varying emotions, stressors and fears. This disease not only affects the individual, but an entire family.
One of the first questions people often ask me is “What will my future look like with Parkinson’s?” As a Care Advisor for the Neuro Challenge Foundation for Parkinson’s, I have worked with thousands of patients over the years and have been asked this question on many occasions. The question is a difficult one to answer, much like an individual, the disease pattern is different for everyone. Some patients progress slowly and others, depending on age, lifestyle and severity of symptoms can progress much faster. It is truly a question that has no foreseen answer.
In my work with patients and families, I encourage them to shift their focus towards the disease. Rather than focusing on the future “what if’s”, patients and families are encouraged to focus on the “right now’s”, the things they can do to empower themselves and prepare for their long term well-being and care.
I offer the following action steps as a guide to begin planning and having the conversations NOW with your spouse and loved ones about how you want to be cared for as you continue to age and deal with the progression of Parkinson’s disease.
Education and sharing educational materials with family and friends on Parkinson’s disease must be continuous. It is important to stay abreast to the latest treatments, clinical research and make sure that your family, particularly those who are closest to you, fully understand the diagnosis and long term effects. This is particularly important for families that have children or relatives that live out of state and are not present for the daily challenges that can occur with PD. It is important to remain open and honest with family and accept help when it is offered. You may not need the help now, but there may come a time when you will and the ability to reach out for and accept help is extremely important.