History of Myths about Parkinson’s Disease
In 1998, Michael J Fox shocked the world when he publicly announced that he has Parkinson’s disease.
Even more shocking he had PD over the seven years before sharing the news publicly. Fox has been open about what he has been experiencing since receiving the diagnosis and become a patient advocate for curing PD.
Today, in this article we will discuss some common myths associated with Parkinson’s disease.
Myth-1: Parkinson’s only affects movements. Most people including some physician believe that Parkinson’s disease only causes movement related symptoms like tremor, stiffness and slowness.
Reality-Parkinson’s disease affects multiple areas of the brain. Many symptoms of PD are unrelated to movement. Many people with PD often experience non-motor symptoms, which begin before the motor symptoms. These non-motor symptoms affect everyday life more than motor symptoms.
These non-motor symptoms include impaired sense of smell, sleep disorders, cognitive symptoms, constipation, bladder symptoms, sweating, sexual dysfunction, anxiety, depression, fatigue, and bowel incontinence.
Myth-2: Levodopa stops working after 5 years
There is a long-standing myth that levodopa can relieve symptoms only for 5 years. Many people reluctant to start levodopa because of this myth. Some physicians also share this “levodopa phobia.”
Reality: Levodopa can be effective for decades. However, over time, its effectiveness might reduce. The senior vice president and chief scientific officer of Parkinson’s foundation, James Beck explained why levodopa becomes less potent: he explained that the key enzyme that converts levodopa to dopamine (aromatic acid decarboxylase or AADC) is predominantly found in dopamine neurons of the substantial nigra, which lost during the progression of PD. So, the main way to make dopamine available to the brain declines as diseases advance.
So in reality, it is not levodopa that stops being effective but the supply of enzyme that it needs to be effective becomes limited.
Myth-3: Levodopa worsens the symptoms
Another myth about levodopa is that it can make PD symptoms worse but it is not true.
Reality- Levodopa can cause other motor symptoms like dyskinesia, which refers to involuntary jerky movements. However, the onset of dyskinesia is related to the progress of the underlying disease rather than how long levodopa has been taken. Therefore, doctors no longer recommend holding off on taking levodopa.
Myth-4: Everyone with Parkinson’s disease has tremors
Reality: Tremor is a well-known symptom of Parkinson’s disease.
But, some of the patients with Parkinson’s disease do not have tremor and even who have tremor, it may not have it at the start of the condition.
Tremor can also occur as a part of other conditions like drug-induced Parkinsonism, vascular Parkinsonism, dystonic or essential tremor, psychogenic disease, or dope-responsive dystonia.
Myth-5: Apart from medication, nothing can help. There is a persistence myth that apart from medication, nothing can help to ease Parkinson’s.
Reality: Research suggests that regular exercise can help to reduce the symptoms of Parkinson’s disease and potentially slow down disease progression.
The Parkinson’s foundation explains that people with PD who start exercise in the early phase and for a minimum of 2.5 hours a week, experience a slow progression and can do more.
Research also suggests that exercise does not just reduce the motor symptoms but also improve associated sleep problem and cognitive function in people with the condition.
Myth-6: Parkinson’s disease is fatal
This is a misconception. Although, diagnosis of Parkinson’s is devastating it is not like a heart attack or stroke.
People with PD can live long and meaningful lives. It much depends on the quality of care by the medical team and you. People with PD are likely to have a reduced life expectancy. This is more significant for people who develop PD at a younger age but less pronounced for those who do not develop dementia. Parkinson’s is not fatal but it increases the risk of fall which is more fatal. Infection is also a big problem.
People generally miss out on those signals and may not notice them. That can be literally a killer. So be sure to stay up to date with check-ups.
Myth-7: Parkinson’s is an old person’s disease
Reality: Most people get diagnosed with PD at age of 60 but it can occur at any age. Some people get PD before the age of 50 which is called young-onset Parkinson’s and some get PD under 20 which is called juvenile-onset Parkinson’s.
About 5 to 10% of Parkinson’s patients are diagnosed under the age of 50.
Myth-8: Parkinson’s disease is caused by genetic mutation
Reality: The cause of PD is yet not known.
Sometimes PD runs in families which suggests hereditary factors. But most patients don’t have a family history. About 15 to 25% of PD patients have family members who had the disease.
But there is not a single definitive genetic mutation that leads to all cases of PD. Researchers believe that PD may be triggered by both genetic and environmental factors.
Even if a person has a family history linked to PD, this does not always mean the person will get PD.
Myth-9: Parkinson’s disease is curable
Reality: With the help of medication, you can slow down the progression of PD and improve your motor symptoms. But there is no cure for PD and this is the truth.
Myth-10: PD can flare up unexpectedly
Reality: In some conditions, people can experience exacerbation or flare-ups of their symptoms. However, PD does not tend to work in this way.
The progression of PD is very slow, although symptoms might fluctuate throughout the day. If PD symptoms worsen suddenly, it is critical to search for an underlying cause.
The most common cause is medication changes, infection, dehydration, sleep deprivation, recent surgery, stress, and medical side effects.
Urinary tract infections are a particularly common cause. Also, certain medications can worsen the symptoms. This includes antipsychotics, lithium, and nausea medication such as metoclopramide and promethazine. So before starting one of these medications, consult with your neurologist to see if there is the better alternative.
Myth-11: Doctor can provide you an accurate outlook
Reality: PD is very unique to each person with the disease. It is highly variable from person to person.
Even a PD expert cannot predict how exactly the disease will progress to an individual. Although doctors understand the range of symptoms that are associated with PD.
There are radical differences in clinical manifestations and progression between patients. Hopefully, in the future, doctors can provide a more clear idea of how an individual’s condition will progress.
Myth-12: Deep brain stimulation is an “experimental” therapy
Reality: Deep brain stimulation is not an experimental theory but it’s been standard procedure for PD worldwide for the past two decades.
In a deep brain stimulation or DBS, it is a procedure in which the doctor placed electrodes in the brain at that point when medications are less effective in masking motor symptoms such as tremor, stiffness and, slowness of movement.
While it may sound frightening and futuristic, it’s been around and successfully used for decades, with>150,000 patients undergone DBS worldwide. DBS works very similarly to a pacemaker, except the wire placed is in the brain, not in the heart.
It is one of the safest brain surgeries that exist, as it is very minimally invasive. Scientific evidence in favor of DBS has been around 20 years and is indeed increasing every year