Guest blog post from Stephanie Stewart, MSN, RN-BC,
Executive Director of the Freudenthal Center for Parkinson’s Disease.
I read a blog written by a person with Parkinson’s Disease (PD) today and it made me sad. She spoke of seeing an old friend in a department store, one who she hadn’t seen in years. The friend revealed that she had been diagnosed with Multiple Sclerosis and she now needed to use a cane. However, she had been relegated to a wheelchair previously and was still searching for other adaptive equipment to cope with her chronic disease. The blogger believed that her friend’s condition was now “defining her” and for this reason, the writer would continue to keep secret her own diagnosis of PD.
I am sad because a disease does not need to define anyone, a person does not need to give the disease that power. Instead, a person with a chronic disease may need to define his or her life in a way that is different than it was prior to the onset of the disease. We should never allow ourselves to be defined by our jobs, our possessions, or our diseases. If we hold fast and decline that type of definition, then we can truly define ourselves in a much better way. We can be intentional and define ourselves with the characteristics that are within each of us.
It is true, PD is a chronic, neurodegenerative disease, one that will attempt to control your life. However, you can write the narrative of that story in many ways, depending on how you handle the disease. A person with PD is on a journey in which he or she will likely fight daily battles. By openly acknowledging the presence of PD, you can take away some of its power and also make it known so that others can offer assistance. For instance, you can join an exercise program that is held for only people with PD. There will likely be others there who are fighting the same battles and may be able to give advice on what ammunition worked best for them. Or, you could create your own group by seeking out experts who can help you continue with your hobbies or passions while inviting others with PD to join in your activities. Recently, I read an article in which several people with PD met weekly for golf lessons with a golf pro who understood PD. The relationships formed and the positive impact on these golfers’ lives was obvious in the outcomes published.
If you have made it to the end of this and you are living with PD and hiding it from others around you, I hope that you stop soon. By making it known that you have PD, you can receive the help and resources that you deserve, resources that may improve your quality of life. I hope that you take charge of PD and every single disruption it creates in your life. Only when you share your story with others can you receive the help that could change your life for the better . . . you can LIVE with PD!