April is Parkinson’s Awareness Month. This means that the concerted efforts of the PD community will be directed at raising the profile of the disease in an effort to raise funds. As a personal coach, I like to stress that awareness begins with self-reflection. This post discusses a few aspects of PD, of which folks with young-onset should be aware. They are written in no particular order of importance.
You should be aware that having a chronic illness like PD does not absolve you of the responsibility for working on your marriage or relationship. All of us, whether we have PD or not, share the reality that we must devote time, attention, and understanding to that person we have decided to share our lives with. If we do this, we find our love is reciprocated. If we don’t, the relationship dynamics become skewed and unbalanced. If you ever worry about being a burden on your significant other because you have PD, neglecting your relationship is the best way to turn that into a reality.
You should be aware that if your medications are causing compulsive behavior, it is incumbent upon you to let your doctor know. If you are doing something you are hiding from your family, your partner complains about a change in your behavior, or you are obsessing about an activity when you are not able to take part in it, you need to tell your doctor. PD can never be an excuse for self-destructive behavior.
You should be aware that your children are affected by the disease. They may not say so and may put on a cheerful mask when you ask them about your PD, but they are affected. No matter what age they are, children watch and learn from your behavior and from how you respond to the disease. You should be aware that you might be teaching them to retreat when life gets tough. You could, instead, teach that any adversity is tempered when one focuses on valuing relationships with our family. It is not fair that you have PD but it is only fair that your children see that you love them and have no intention of letting any disease disrupt that.
You should be aware that even though you have PD, your life is not over unless you make a decision it is. The disease is inexplicable, frustrating, and capricious. It is also manageable. You should be aware that although effective management is not the same as a restoration to the way you once were, it is infinitely better than the state you would be in otherwise. Modern PD treatment allows you access to a larger canvas upon which to paint the story of your life. You always have the choice of saying “PD owns me” and making no use of the opportunity you have been given. Be aware, however, that this marks the point that your life is over even though you may still breathe and watch the world pass by you for many more years.
April is Parkinson’s Awareness Month, but your fight against the disease should not be limited to just 30 days of the year. It is important to raise-awareness and understanding in the larger world. But it is equally important that you maintain a self-awareness of PD that allows you to meet its challenges fully. That is a job that should occupy the remaining 11 months of the year.