We just started working with an occupational therapist and it has been an eye-opening experience for me. I requested the process so that we could discuss changes we might make to our home as we prepare for an uncertain future. I find that instead I am learning so much about what is happening now.

My first thought is why we haven’t we had this service before? My husband was diagnosed more than 10 years ago, he has worked with multiple neurologists and a movement disorder specialist and not once in all that time was he referred to an OT. When I brought it up at his last appointment, his neurologist seemed to scoff at the suggestion and even questioned how she should word the request- “thinking about remodeling and need a consult?”. I was somewhat surprised when we received a call from the OT herself to schedule an appointment.

There are a lot of people who can help us in our journey, unfortunately we often have to find them on our own. I have learned that I can’t rely solely on our neurologist or Primary Care Physicians to know who or what we might need. I need to listen to others in our support network and then advocate for the most comprehensive care for my husband. Consulting with specialists including Physical, Speech and Occupational Therapists helps me make sure that I am doing all I can to support him while at the same time encourages a safe and full life for both of us.