“A myth is a lie that conveys a truth.” C.S. Lewis
“Myths are made for the imagination to breath life into them.” Albert Camus
Introduction: Parkinson’s is the second most common neurodegenerative disorder. Thus, Parkinson’s occurs relatively frequently in adults. Unfortunately, it can be a complex disorder for physicians to make a proper diagnosis, and it can also be a complicated disorder to live with. Over the past few years, I have read numerous publications and posts describing the most common misconceptions about Parkinson’s. It is my turn to repeat and correct some of these flawed notions about Parkinson’s. Likely, you have read some of these myths/misconceptions before, but hopefully, some of these will be new additions to your knowledge base. The myths/misconceptions are grouped into 3 categories: General Features, Symptoms, and Treatment of Parkinson’s.
“Myths are public dreams, dreams are private myths.” Joseph Campbell
General Features of Parkinson’s:
1. Only people of advanced age get Parkinson’s.
We know that the average age of someone developing Parkinson’s is typically between 60 and 65 years old. However, 1 in 5 adults who develop Parkinson’s are under 60 years old, and many of these are under 50 years old. Interestingly, based on information from Stanford University School of Medicine, they would classify me as a young-onset person with Parkinson’s.
2. Parkinson’s is primarily a genetic disease.
There is definitely a genetic or familial component to Parkinson’s; about 10% of the patients diagnosed with Parkinson’s have such a lineage, whereas the vast majority of those with Parkinson’s have an unknown cause for their Parkinson’s. Herein lies one of the complicating features of Parkinson’s, as it can be caused by neuroinflammation, immune system dysfunction, mitochondrial dysfunction, genetic mutation, oxidative stress, protein aggregation, and multifactorial environmental factors.
3. Parkinson’s affects all people the same way.
When we get the winter flu, frequently, most of us express the same symptoms for about the same length of time; we feel terrible most of the time, and in a week or so, we are recovering. By contrast, Parkinson’s hits us all differently, in that some individuals progress very slowly with little change in mobility and motor symptoms, while others have a more quickly evolving disorder that results in the progression of symptoms with severe medical consequences.
4. The impact of Parkinson’s is due to only one region of the brain.
There is no doubt a motor component to Parkinson’s, which would argue for a central role of dopaminergic neurons in the mid-brain substantia nigra. Yes, the dopamine produced in the substantia nigra and the basal ganglia is the master controller of movement. But several non-motor symptoms, depression, sleeping problems, and psychosis can precede motor complications. And progression may lead to memory loss, cognition difficulties, nightmares and hallucinations, and mood changes, and how we handle pain can be modified. This would suggest that changes in the cerebral cortex, the limbic system, and the inferior temporal gyrus could all be involved in these processes. Thus, it is likely that several regions of the brain could be affected beyond just the substantia nigra.
5. Research for Parkinson’s is not keeping up with modern-day scientific advances. Absolutely NOT true. The findings are substantial and continuous. For instance, more than 75,000 publications have been reported since 2018 on Parkinson’s disease; at the same time frame, 110,000 papers were reported on Alzheimer’s disease. Just a brief example of very recent findings that are very notable include:
a. Weintraub, D.; Aarsland, D.; Chaudhuri, K.R.; Dobkin, R.D.; Leentjens, A.F.G.; Rodriguez-Violante, M.; Schrag, A. The neuropsychiatry of Parkinson’s disease: advances and challenges. The Lancet Neurology 2022, 21, 89-102, doi:https://doi.org/10.1016/S1474-4422(21)00330-6.
b. Pagano, G.; Taylor, K.I.; Anzures-Cabrera, J.; Marchesi, M.; Simuni, T.; Marek, K.; Postuma, R.B.; Pavese, N.; Stocchi, F.; Azulay, J.-P.; et al. Trial of Prasinezumab in Early-Stage Parkinson’s Disease. New England Journal of Medicine 2022, 387, 421-432, coi:10.1056/NEJMoa2202867.
c. Lewis, P.A. A step forward for LRRK2 inhibitors in Parkinson’s disease. Science Translational Medicine 2022, 14, eabq7374, doi:doi:10.1126/scitranslmed.abq7374.
d. Jennings, D.; Huntwork-Rodriguez, S.; Henry, A.G.; Sasaki, J.C.; Meisner, R.; Diaz, D.; Solanoy, H.; Wang, X.; Negrou, E.; Bondar, V.V. Preclinical and clinical evaluation of the LRRK2 inhibitor DNL201 for Parkinson’s disease. Science Translational Medicine 2022, 14, eabj2658.
e. Omberg, L.; Chaibub Neto, E.; Perumal, T.M.; Pratap, A.; Tediarjo, A.; Adams, J.; Bloem, B.R.; Bot, B.M.; Elson, M.; Goldman, S.M. Remote smartphone monitoring of Parkinson’s disease and individual response to therapy. Nature Biotechnology 2022, 40, 480-48.
Science and our world reached a relative standstill because of the COVID-19 pandemic. It has been important for all of us to deal with the consequences of this virus. Likewise, a substantial and meaningful part of this work has been understanding the complex relationship of SARS-CoV-2 with the brain. Since 2019, there have been more than 225,000 publications regarding COVID-19, with about 17,500 of these reports involving Parkinson’s and COVID-19, which include several publications from me along with some very talented medical and graduate students as co-authors:
f. Hribar, C.A.; Cobbold, P.H.; Church, F.C. Potential role of vitamin D in the elderly to resist COVID-19 and to slow progression of Parkinson’s disease. Brain Sciences 2020, 10, 284.
g. Hall, M.-F.E.; Church, F.C. Exercise for older adults improves the quality of life in Parkinson’s disease and potentially enhances the immune response to COVID-19. Brain Sciences 2020, 10, 612.
h. Morowitz, J.M.; Pogson, K.B.; Roque, D.A.; Church, F.C. Role of SARS-CoV-2 in modifying neurodegenerative processes in Parkinson’s disease: A narrative review. Brain Sciences 2022, 12, 536.
In my humble opinion, those who say that research in Parkinson’s is not keeping up are just naysayers and are just not satisfied that more is not being accomplished. Many scientists and clinicians devote their careers to Parkinson’s and unraveling its mysteries to help us live better, stronger, and longer.
“Myths which are believed in tend to become true.” George Orwell
Symptoms of Parkinson’s:
1. Parkinson’s is only movement-related.
If you have Parkinson’s, you know this is a false statement. For many of us, the motor defects are visible, while the non-motor symptoms are usually not seen. It was identified as a motor disorder, and the Cardinal Signs of Parkinson’s are related to motor dysfunctions. These, in no way, diminish the importance of the non-motor problems associated with Parkinson’s. Some of the more common non-motor symptoms include constipation, urinary problems, depression, psychosis, and sleeping disorders
2. Tremor must be present to be diagnosed with Parkinson’s.
The Parkinson’s tremor, when present, is usually quite noticed. Although, up to a third of persons-with-Parkinson’s have no discernible tremor. And some PwP have a non-Parkinson’s tremor. And do not forget, there are many people diagnosed with essential tremors, and they do not have Parkinson’s.
3. Parkinson’s can explain all of a person’s symptoms.
Older adults may also have other chronic disorders, like cardiovascular issues, diabetes, etc. Thus, depending on the symptoms, it may be a manifestation of Parkinson’s, or it may not be. And this includes behavior and responses to some things we face in life. Occasionally, Susan will ask me, is that response of mine because of my Parkinson’s? Frequently, it is not; it is just me.
4. Neurologists can predict the time for progression of your Parkinson’s.
First off, it is not an easy disorder to diagnose. Second, Parkinson’s is uniquely individualized regarding motor- and non-motor symptoms. Maybe if someone is also exhibiting frailty with Parkinson’s, that may lend to a poorer timeframe for progression. But Neurologists are not fortune tellers. There are so many variables that accompany a diagnosis of Parkinson’s, and personal willpower and reaction to the disorder is likely the best determinant of longevity linked to progression. But with the individuality of Parkinson’s, clearly, that includes some who will progress relatively quickly and those who progress almost imperceptibly. I doubt most Neurologists would want to venture a guess of the rate of progression without really knowing you and your disorder. The answer, however, lies deep within us.
5. Rapid and sudden deterioration of symptoms.
My symptoms seem like clockwork; they are present when my medication is wearing down or under a certain amount of stress. Parkinson’s is considered a chronic and progressing disorder; it moves by years and not by minutes/hours. Most of us are sure and steady, motor- and non-motor symptoms perceptible and accounted for daily and constantly. Consistent with the answer above, any rapid and sudden change in one’s symptoms should be carefully assessed, but the hope is there is an explanation. Likely, it is a response to stress (a big one for many of us), extreme exertion may consume available dopamine stores, miss timing or treatment of drug therapy (you forgot to take it on time), or maybe one has taken too much by mistake. Obviously, some other medical problem may be influencing your Parkinson’s symptoms. Contact your Neurologist immediately, and work through this change and its impact on your current life. Hopefully, there’s an answer waiting for you.
“History often resembles myth, because they are both ultimately of the same stuff.’ J.R.R. Tolkien
Treatment of Parkinson’s:
1. Besides carbidopa/levodopa, there is nothing more a person can do to treat their disorder.
There are several classes of drugs that Neurologists use in addition to carbidopa/levodopa. These include dopamine agonists and inhibitors of enzymes that inactivate dopamine [monoamine oxidase type B (MAO B) inhibitors and catechol-O-methyl transferase (COMT) inhibitors]. Some can be used in place of carbidopa/levodopa, and some are used in conjunction with carbidopa/levodopa. However, they all have ‘issues,’ especially dopamine agonists.
Perhaps the most helpful strategy to slow the progression of your symptoms and maintain your quality of life is simply exercising. Exercise helps promote both cardiovascular health and brain health. In addition, using more demanding moderate- to high-intensity exercise programs (examples include PWR!Moves, Rock Steady Boxing, Dance for PD, stationary bike, and power-walking with walking poles) may, over time, promote neuroplasticity.
If anyone has read this blog in the past, there are numerous Complementary and Alternative Medicine (CAM) approaches to deal with Parkinson’s. Search for various treatment modalities, from substances to mindfulness meditation, through this blog for many different posts. The goal is simply to maintain the number of dopaminergic neurons we presently have and to help maintain a positive quality of life with this disorder.
2. Dyskinesia is a symptom of Parkinson’s.
Dyskinesia is not a symptom of Parkinson’s, although it is related to treatment with carbidopa/levodopa. Dyskinesia is an involuntary and erratic movement involving the arms, legs, trunk, and face. Typically, the symptoms of dyskinesia will begin about five years after beginning daily therapy with carbidopa/levodopa. Unfortunately, dyskinesia usually begins at optimal doses of carbidopa/levodopa for that particular patient. Thus, lowering the dose of carbidopa/levodopa may better control these extraneous movements.
3. Carbidopa/levodopa stops working after 5 years.
The wonderful thing about levodopa is that it penetrates the all-important blood-brain barrier and enters the brain, ready to be converted to dopamine. Sadly, carbidopa/levodopa keeps working, but the PwP may have fewer dopaminergic neurons to process the levodopa into dopamine; thus, it will take more of the drug to be effective. There does not seem to be a ceiling for how much levodopa and how long one can take it.
4. Carbidopa/levodopa causes hallucinations and insomnia, and it is toxic.
Some scientists believe that large doses of carbidopa/levodopa are toxic to neurons. My reading of this field does not fully buy this argument because one continues to lose dopaminergic neurons with aging and the disorder’s progression. How to balance disease progression with levodopa’s toxicity, presumably, is the question. Studies have shown that levodopa benefits patients with Parkinson’s. Furthermore, it is not levodopa causing hallucinations; it again is, sadly, the disorder’s progression. And insomnia is another feature of the disorder, not a feature of taking levodopa. Furthermore, levodopa taken at night before sleep should allow one to turn better and easier and help one sleep.
5.. Parkinson’s is curable.
As of today, Parkinson’s is not curable. However, there are many ways to combat the disorder’s progression and maintain quality of life. Staying informed through your Neurologist about recent advances is a start. Having a healthy attitude balances your knowledge and understanding of the disorder. Remember, exercise is medicine and is the best choice to help one slow the beast named Parkinson’s. Reduce the stressors in your life; it makes life with Parkinson’s more manageable. And remember the words of Cassandra Clare, “If you keep hope alive, it will keep you alive.”
“I’m always interested in debunking myths if they are untrue. But it’s also important to identify myths and how they function, what value they may have.” Neal Ascherson
Closing Thoughts: Many myths and misconceptions about Parkinson’s have been around for a while. I have tried to balance my responses and answers because I am still not an expert on Parkinson’s but my knowledge and understanding of the disorder are expanding. If you need further clarification, take your concerns to your Neurologist, they are the actual managers of your health, and they should be considered your sounding post for reason and answers regarding your Parkinson’s.
“For what are myths if not the imposing of order on phenomena that do not possess order in themselves? And all myths, however they differ from philosophical systems and scientific theories, share this with them, that they negate the principle of randomness in the world.” Stanislaw Lem
Cover photo “Sunset over Hudson’s at Hilton Head Island” by Frank C. Church
Journey with Parkinson's 