Parkinson's Research - Are We Standing Still or Making Progress?
As we strive for breakthroughs in the diagnosis and management of PD, it’s easy to lose sight of our progress. Our goal is to cure disease, however medical research is nearly always incremental- step-by-step progress that steadily accumulates to relieve symptoms, delay disability and improve quality of life.
To gain some perspective, here’s what PD management looked like 25 years ago when I was beginning my career as a movement disorders specialist:
PD was defined as a motor disease. The cardinal features were tremor, rigidity, bradykinesia and postural instability…period.
The term non-motor features hadn’t been coined and problems with depression, anxiety and sleep were described as understandable reactions to the motor symptoms.
Cognitive changes were believed to be relatively uncommon and only seen in very late disease stages.
There were virtually no surgical options.
There were far fewer approved medications for PD. The following drugs were not available: carbidopa/levodopa extended release, Rytary, pramipexole (Mirapex), ropinirole (Requip), rotigitine (Neupro), rasagiline (Azilect), tolcapone (Tasmar), entacapone (Comtan).
The value of using amantadine to reduce dyskinesias was unknown.
When hallucinations developed, there were no drugs to treat this problem without markedly worsening the motor symptoms.
Botulinum toxin injections were rarely used in PD - for either dystonia (cervical, blepharospasm) related to PD or for siallorhea (drooling).
The presence of PD-related changes outside of the brain was virtually unknown.
The existence of a long prodromal (preclinical) phase- a period of bodily changes prior to the onset of early symptoms was unrecognized.
These symptoms were poorly recognized as part of the spectrum of PD: loss of smell, constipation, REM sleep behavior disorder and fatigue.
Physician-reported outcomes such as motor symptoms were important; Patient-reported outcomes such as disability and quality of life were unimportant.
There was no Michael J. Fox Foundation, World Parkinson Congress, Parkinson’s Foundation, Davis Phinney Foundation, or PD Biomarkers Project.
PD was not described as a genetic disorder. Environmental factors were believed to be the main cause.
The efficacy of exercise and physical activity was unknown. It was not part of routine management and was rarely recommended.
What have I missed?
And what will we see over the next 25 years??
Lisa M. Shulman, MD has presented at the First and Second World Parkinson Congresses. She is the Eugenia Brin Professor in Parkinson Disease & Movement Disorders and The Rosalyn Newman Distinguished Scholar in Parkinson’s Disease and serves as the Director at the University of Maryland PD & Movement Disorders Center at University of Maryland School of Medicine.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®