You notice a stiffness to your walk, a softness or slowness creeping into your speech. Maybe you have chronic constipation that you can’t explain or vivid dreams that literally jerk you out of sleep.
Something is happening, something that you can’t name and that you don’t want to address. For more than 30% of people who develop Parkinson’s disease, the condition does not start with tremors, but with months or years of degenerative motor, speech and other muscular issues.
One of my patients, for instance, has been treated for the disease for more than 35 years. He drives, he plays tennis and he enjoys his life without tremors.
Still, I understand that diagnosis can be hard to take. Depression is common following a diagnosis, and many people delay coming into a neurologist’s office for four or five years after they notice tremors and other symptoms.
I have patients who “diagnosed” themselves online after noticing that their handwriting had gotten smaller or that they were having trouble using a keyboard and a mouse. Instead of coming in right away, they develop significant anxiety, wallowing in the stigma of an outdated notion of Parkinson’s disease, until symptoms are too pronounced to ignore.
When they do come in, we help them treat their depression and control their Parkinson’s disease. With everything from diet and exercise to medication and neurosurgery, patients are often able to regain control of their motion and their lives.
Among the most well known surgical interventions is Deep Brain Stimulation, in which electrodes are implanted in certain areas of the brain to regulate abnormal activity. Every year, one of my DBS patients sends me videos of himself skiing, highlighting the fact that Parkinson’s disease is not something that has to consume you.
At Pickup Family Neurosciences Institute at Hoag, we have also been treating patients with an innovative Dopamine pump, known as a Duopa. The pump allows us to control and fine-tune medication to the tiniest milligram to get the best therapy possible.
New research into the disease focuses on early diagnosis and even pre-diagnosis. In the same way that we now know what genes to look for to predict a high risk of breast cancer, researchers are well on their way to discovering clues that can predict a high risk of Parkinson’s disease. Scientists are also working on a vaccine against alpha-synuclein, a protein associated with the disease.
While we are more than a decade away from a vaccine, the treatments we have now and the hope we have for the future make it — I hope — less scary for people who think they might have Parkinson’s to come in and get evaluated.
Parkinson’s does not mean doom. And the earlier you are diagnosed, the more we can work together to help.