April is Parkinson’s Disease Awareness Month, a time to spotlight this devastating disease that impacts roughly 1 million people in the United States and 10 million people globally. At the center of this observance is also World Parkinson’s Day on April 11, designed to further our community and global awareness of this disease and its impact on those diagnosed and their families.
Having a loved one with a progressive neurological condition like Parkinson’s means watching a slow decline replete with difficult symptoms and emotional upheavals. Sufferers of this condition generally report shaking, stiffness, slow movement, a quieter voice, pain, fatigue, changes in mood, including anxiety and depression, and difficulty thinking clearly. Being a progressive disease, as symptoms worsen, it will become harder for your loved one to perform daily activities.
While all of this is incredibly difficult for the sufferer, it can also be heartbreaking for their families, who often take on a larger caregiving role. If you have a loved one with Parkinson’s, it’s important to talk with your children and other family members about what the diagnosis means and what they can expect.
Prepare children for changes
Experiencing something sad and unexpected, like the sudden loss of a loved one, can devastate a child. It is important, therefore, to prepare them for what they may see or sense when visiting with someone who has Parkinson’s.
If a child or teenager has a parent with this disease, they may need someone to talk to who can tell them exactly what it means. They may also cycle through a range of emotions like grief, sadness, worry or anxiety that they need to talk about with a trusted adult figure, such as a therapist. Normalizing their emotions within the context of the situation will be a relief. Create an open dialogue early so they know they can come to you with any questions or feelings as the disease progresses. Not only will the children in your family make room for bigger emotions, adults will as well.
Caregiving changes with disease progression
Whether your spouse has Parkinson’s or you care for an aging parent with this disease, caregiving is a full-time, unpaid job. Prepare for what the disease looks like now as well as what’s to come by taking the following steps:
- Be realistic about the future. Help your loved one prepare financially and continue to have open conversations.
- Take care of yourself.
- Get help when you need it.
- Work to maintain a positive relationship with your loved one.
- Encourage your loved one to remain active and care for themselves as long as possible.
Connect with others who understand
Joining a support group connects you with others who understand what you’re going through and ensures your continued emotional health when dealing with a Parkinson’s diagnosis. When navigating a disease that changes the course of your entire family’s life, it’s important to be open and honest about your feelings, whether that means sharing with others or having candid discussions within your own family.
Hancock Wellness Center offers “Rock Steady Boxing” for those diagnosed with Parkinson’s. By exercising with our trained coaches who “know the ropes,” Parkinson’s patients can fight out of the corner and start to feel—and function—better! For more information, click here.
As actor and disease’s spokesperson Michael J. Fox says, “Parkinson’s sucks.” It isn’t easy for anyone, the patient or the family supporting and caring for them. Talking to your kids about what to expect when a loved one is diagnosed with Parkinson’s begins an honest conversation within your entire family unit. After all, the only way to make a disease like this one feel less intimidating is through the love and support of family.