When my husband was first diagnosed with Parkinson’s Disease, I started hearing about this team we needed to create to support him. We were told his team should include a medical doctor, a neurologist, a speech and language pathologist, a physical therapist, an occupational therapist and even a social worker. I expected this team of professionals would come together in a room and discuss my husband’s diagnosis with us, I couldn’t have been more wrong. The reality is that he needs to have access to each of these specialists, but expecting them to communicate regularly about his situation isn’t reasonable. His team members are there when he needs them, but not all the time.

This team of professionals has the task of providing care for my husband, they’re not here to support me. I am considered a resource of information regarding his condition or perhaps a helper they can recruit, not an individual facing challenges who might also need consideration or assistance. What I have determined is that if I want to ensure my needs are meant, I must design and create my own team. I have to define who, professional and otherwise, will enable me to keep going in my life as my role of CarePartner becomes more intense.

It took me years to figure this out, but now I feel I have a pretty good team of my own. It includes my primary care doctor, my mental health therapist, a yoga instructor who helps keep me calm and fit, my family who are always here for me, even the people who help with lawn and home maintenance. The most important component is the support network of friends I have found within the Parkinson’s Community. They are here for me whenever I feel like I am struggling and give me the strength to face each day. Just as my husband shouldn’t be facing his journey alone, neither should I. Now, thanks to this amazing team of people, I won’t.