When my husband was first diagnosed we didn’t realize that his Primary Care Physician was familiar with Parkinson’s Disease because his father-in-law had it. Even with his personal knowledge, the doctor didn’t recognize the signs in my husband, and we lived with a missed diagnosis of essential tremor for years before being referred to a neurologist. The PCP would later admit that he should have known. I wound up gifting his office with a copy of “Every Victory Counts” from the Davis Phinney Foundation, I hope they use it to make themselves more aware.

At least they weren’t as uneducated about Parkinson’s Disease as the staff at a local urgent care facility. My husband wasn’t feeling well, could barely stand on his own, so I took him in thinking he had a viral infection. The staff at the facility hooked him up to a heart monitor and decided he was having a heart attack because they didn’t recognize that his tremor was triggering the sensors. They called an ambulance and sent him to the ER which nearly gave me a heart attack all because they didn’t know how to properly evaluate someone with PD.

We were pleasantly surprised recently when my husband had his annual meeting with his ophthalmologist. Normally she is very robotic and the appointments are routine. This time I decided to change things up and asked what we should expect because of his Parkinson’s diagnosis. She dropped the doctor persona and immediately responded with a very concise and friendly answer. It was obvious she was informed about the complexities of treating someone with this disease.

I have decided that the best thing I can do as his advocate is be prepared for any alternative we may encounter. I need to have information that I can share or that is easily accessible. It is important for me to take advantage of every opportunity to share our story and educate others about life with Parkinson’s Disease. Let’s face it, most people are going to know someone who receives a diagnosis of PD in their life. I might even be giving them a heads-up on what is coming in their future and it never hurts to be aware.

There is a great tool put out by the Parkinson’s Foundation called the Aware in Care Kit. Click here to learn more.