Five years ago, my husband was diagnosed with Young Onset Parkinsons disease at 37 years old. We had three young children and we were both working full time. While he did well for a while, it eventually began wearing on his body, mind, and personality. The medicines he needed to help his symptoms had the side effects of OCD, paranoia, and anxiety. My sweet, gentle, strong, brilliant husband became suspicious and obsessive about everything; he was unable to walk without a cane, and too anxious to even leave the house. In the past five years he has had three back surgeries, two brain surgeries and has taken thousands of pills. I never thought that I would be the sole caregiver before our children even got out of school.
It has been hard watching his body and emotions slowly fail, but strangely it has brought us closer together. We have learned that "For better for worse, In sickness and in health" are not wedding vows to take lightly! We have gone through periods where we didn't trust each other and didn't even want to be around each other, but we talk and work through it all and do what we need to get back in balance. I am a strong, confident person, but this past year especially has shown me each of my shortcomings. I don't like waiting, and patience is basically not in my vocabulary. I also don't like relying on anyone, but Parkinson's is a disease of waiting, patience, and reliance. So instead of just letting Parkinson’s define how I deal with things, I have allowed it to change me for the better. Most importantly, I have learned that after five years that I cannot do it alone. I need others for shoulders to cry on, ears to listen, hands to help, hearts that are willing to give when I just can't go on one more minute. If you are taking care of someone you love or if someone you love is taking care of you, please remember that you each need time for yourselves without the other. People always tell me to take care of myself, but they forget that my husband also needs time; time to have friends and support as well. We have also learned that we still need to "date" and not let symptoms be our focus.
Having a degenerative disease reminds us daily to not waste a moment. We are going through this struggle together, but we aren't letting it define us! - Stacy, OH