We were talking with one of the many new medical people in our lives thanks to my husband’s diagnosis and I asked about the difference between Parkinson’s and parkinsonism. His response was that parkinsonism, with a little p, is an umbrella term and refers to the broader spectrum of the symptoms. A person may present with PD like tremors, but it is attributed to another issue. A couple of examples that I hear about regularly would be Dementia with Lewy Bodies and Multiple System Atrophy. In both of these illnesses there are notable differences that will show over time which often means that an initial diagnosis of PD may change. It’s another confusing factor we face when caring for someone in this world. 

What difference does it make? Why should I care whether my husband has typical Parkinson’s or one of the other atypical variants? It matters because I need to know what to expect and what should be reported to his medical team. Parkinson’s is such a diverse illness anyway, I need to know what to watch for. My husband presents with all three of the major symptoms of Parkinson’s Disease defined as tremors, Bradykinesia or slowness of movement, and rigidity or stiffness. We know that these symptoms will progress over time and that the medications he takes are effective in minimizing their impacts. This creates my baseline. If he deviates from that, I need to talk with his doctor.

My response as a CarePartner will vary based on which symptoms appear. If my husband should develop one of the atypical versions of parkinsonism, my interventions will need to change. That is why I need to know what is happening and, as much as possible, where it might lead. Caring for someone with PD is an uncertain and difficult proposition, that’s why it is important to arm myself with enough knowledge to at least be ready should things change.

For more information check out Parkinson’s Vs. Parkinsonism on the Davis Phinney Foundation website.