Losing Who I Once Was
The realization that something is wrong with your body takes time. Parkinson’s progresses slowly and sometimes it’s years before an accurate diagnosis can be made. Even though you’ve had the symptoms for a while, the diagnosis itself is overwhelming. So many questions. What is going to happen to me? What will my future look like? How am I going to support my loved ones? Do I take medications right away? Do I wait? Do I tell people? How can this happen to me? Am I going to die? Parkinson’s can have a negative impact on self-esteem. You are forced to become so hyper-aware of your body. Every tremor is noticeable, every foot drag annoying. Trying to hide it from friends, neighbors, the grocery store clerk is exhausting. Keeping your hands in your pockets or sitting on them to keep people from staring becomes natural.
The loss of being able to do things you used to do is probably one of the hardest aspects of the disease. From small things like putting a key in the door or writing a note to someone to bigger issues like driving or visual problems that prevent you from reading your favorite book. Walking down the street becomes difficult, both from balance issues and fatigue. Questioning whether you can do these things causes self-doubt and further loss of self-esteem. These physical symptoms and feeling of depression, anxiety, and apathy are likely to reduce social interaction and increase isolation. Another loss.
The dependency on medications and living by the clock to determine your next dose is also a change in quality of life. Remembering to take medications at certain intervals is hard. The on/off times can be difficult to manage. Planning your day around your good times becomes very frustrating.
Depending on the stage of life you are diagnosed in, the losses vary greatly but are equally as devastating. If you are younger, it might be the loss of the ability to work due to cognitive or physical issues. If you are older, adding Parkinson’s to other possible illnesses can be debilitating.
Loss doesn't mean I won't fight
I don’t have the answers how to cope with these life changes other than to say that I sought out counseling and support groups to help me manage loss. I’ve had Parkinson’s long enough that I’ve accepted that future loss in inevitable and I’ll deal with it when it happens. But, that doesn’t mean I won’t fight it with everything I’ve got.
Do you participate in a support group for PD?