A few years ago, my husband developed pain in his shoulder. He wasn’t able to lift his arm and eventually lost the use of it almost entirely. Throughout the ordeal his medical team told him that the pain was a side effect of Parkinson’s and that there was really nothing to be done.  He heard this from his PCP and his neurologist. The PCP finally sent him to a physical therapist who ordered x-rays and an MRI which showed total deterioration of the joint due to arthritis. My husband was referred to a surgeon for a complete shoulder replacement. Now, one year later, he has use of the shoulder again and the pain is gone. If only someone had looked beyond his PD diagnosis sooner, he could have been spared several years of increasingly debilitating pain.

I don’t blame the doctors for failing, they are sincerely trying to provide the best care and yes, in this case, shoulder pain can be a component of PD. Where the failure comes in is when they see my husband’s PD and stop there. Further investigation may indicate that the problem is indeed just a part of his Parkinson’s diagnosis, but what if it isn’t? What if there is a treatment that can help and my husband is missing out on it?

My husband has a questionnaire that he completes before every doctor’s appointment. It covers any changes that have taken place and he emails it prior to his appointment so his doctor can review it. We are adding a question to it for our benefit- “What would you tell me about the state of my health if I didn’t have Parkinson’s Disease?” We want to take PD out of the equation to make sure nothing is missed as we struggle to move forward on this journey.