My husband is diagnosed with typical Parkinson’s Disease. That diagnosis has not changed as his symptoms progressed. This is significant because the Parkinsonism umbrella is large and includes several atypical versions of this neurological disorder that look like PD but aren’t. Those diagnoses are not always seen early in the illness and are often added at later stages. They are called Parkinson-plus syndromes and include MSA (multiple system atrophy), PSP (Progressive Supranuclear Palsy), DLB (dementia with Lewy bodies) and CBD (corticobasal degeneration). Treatments for each may vary but the role of CarePartner doesn’t change.

It is interesting that these newer sub-categories didn’t exist 30 years ago when we were dealing with my father’s diagnosis. Looking back it is obvious that he had DLB (dementia with Lewy bodies) but it was never defined as such nor explained to us. Still my mother did everything she could to keep him at home until his behaviors became dangerous and he had to be hospitalized to protect both of them. Will on-going research be able to even more clearly define the differences within Parkinsonism and help create better treatment plans for the many different categories? We can only hope.

Getting back to my original thoughts, I was talking with a fellow CarePartner who said the doctors now think her husband actually has MSA (multiple system atrophy) rather than PD. They have taken him off his carbidopa levodopa because it wasn’t helping much. The change in diagnosis doesn’t change her challenges in caring for him. She was concerned because the doctor told her that his life expectancy is less than regular PD, but she still stands ready to help him fight the upcoming battles.

As a CarePartner, I am called upon to acknowledge my husband’s illness, accept the changes and absorb the impacts. If things shift, I must shift with them because I know together we can weather whatever storm, under whatever name, Parkinson’s decides to throw at us. My role in this journey doesn’t change because doctors someday decide my husband has something else. I simply need to be ready to love and care for him the very best way I can regardless.