Our days have become very Parkinson’s focused. As an example, my husband now takes pills 6 times a day, but can’t eat for an hour before or after. The pills make him drowsy, so he naps often. Knowing that exercise is the best remedy for PD symptoms, we workout together four days a week for an hour each time. He also has a 60-minute movement and voice class once a week and a stretch class on the weekends, we schedule chores or other activities around these. We attend a PD support group regularly as well as an informal PD breakfast group. Finally, we strive to get 7 to 8 hours of sleep every night but that is often interrupted by tremors or trips to the bathroom. PD may not be terminal, but it definitely has made an impact on our lives.

In the midst of all of the things I do to support my husband, people are reminding me to take care of myself. I am supposed to find outside interests that provide a break from the realities of living with someone who has PD. My husband is able to be alone for short periods of time which allows me the opportunity to volunteer for a few hours at a local museum. I am also learning to take short walks around the neighborhood or quick trips to the store alone. Unfortunately, I find myself feeling anxious and guilty for leaving him at home.

I will work on finding things outside the PD world, but when I have the time, I don’t have the energy and when I have the energy, I really want to spend it with my husband doing things we enjoy together. So, for now, it will be those small breaks I am able to take while he naps or on the days when I don’t exercise with him that will keep me sane as we continue this unrelenting journey together.