Life with a chronic, progressive disease is a major transition. A person who once thought of themselves as healthy must suddenly adjust to the thought of life with a disease that has no cure.
Early in the progression of the disease, the psychological aspects of having the disease may be more of an issue than the motor problems. You may experience denial, disbelief and anger before eventually coming to terms with the fact that you have Parkinson’s disease. If you have Parkinson’s disease, you will never return to “normal”. Your treatment goal will not be eliminating all signs of the disease but maintaining the ability to function.
Some questions to discuss with your doctor:
- How do I tell my family and friends?
- Will Parkinson’s disease interfere with my role as a spouse and parent?
- How do I tell my coworkers and supervisors?
- Will Parkinson’s disease interfere with my work?
- Should you consider disability?
- How quickly will the disease progress?
- How will the symptoms be managed?
- Will I become an invalid?
Expect some lifestyle adjustments if you or a loved one has Parkinson’s disease. Certain hobbies and household tasks may become more difficult. You need to be realistic about what you can and cannot do — driving, for example, may be a danger to you and other people on the road as Parkinson’s disease progresses. You and your spouse may need to change roles — as the patient loses the ability to do certain things, the spouse may need to assume those responsibilities. Be honest with each other about what roles or tasks are becoming too difficult and which can still be continued.
Remember that you aren’t going through Parkinson’s disease alone. You have your physician, family and friends, specialists, support groups, and more. Be open to whatever support and help is available to you.