To the average person on the street, and even to most non-neurologist doctors, Parkinson’s is a disease mainly characterized by faulty movement and balance. Even James Parkinson, discoverer of the disease, described it in 1817 mainly terms of motor symptoms, the big three classic cardinal findings, still described that way today as tremor, rigidity, and Bradykinesia (slowing) seen in the extremities with one side usually showing worse symptoms than the other during the entire course of the disease.
Ironically, only half of the 10 most common warning signs of Parkinson’s disease, designated by the National Parkinson Foundation (see top ten list in previous article) actually involve motor symptoms. The remaining half involve symptoms that the average person and even actual sufferer might not associate with images of Parkinson’s disease. Many of these non-movement symptoms can develop as early as 3-5 years before motor disturbances appear and cause a sufferer to actually end up before a neurologist. Creating a stronger public awareness of some of these non-motor symptoms might bring in more patients for evaluation who would otherwise be dismissed and help patients themselves and even loved ones and family to understand that some of the behavior seen does not arise out of personal laziness, self- pity or any other non-productive behaviors.
Non-motor symptoms derived from the original list of 10 warning symptoms of Parkinson’s disease as designated by the National Parkinson’s Foundation:
1. a loss in sense of smell
2. trouble sleeping
4. soft or low voice
5. dizziness or fainting
I have added the following two:
1. fatigue and EDS (excessive daytime sleepiness)
2. new-onset depression or anxiety disorder
Interesting Brain details you may skip over.
If you look at areas of the brain affected by Parkinson’s disease under a microscope, you see a very characteristic abnormal doodad called a Lewy body. Although the actual nature and cause of these abnormal brain cell units of debris is not known, it seems that somehow the depletion of the brain chemical dopamine to that brain area somehow causes them to develop. Affected cells misfire and eventually die. Without getting into too much detail, my main reason for mentioning this, is that if you look at brains and people with early-stage Parkinson’s disease, even in those who have not developed motor symptoms, you find these Lewy bodies. Where they’re found directly matches brain regions involved in each of these non-movement-related symptoms.
These Lewy bodies can be found in brain regions affected by Alzheimer’s disease also. They consist primarily of an abnormal protein called alpha-synuclein. Investigators are now looking at vaccines that could potentially stimulate the immune system into getting rid of alpha-synuclein from the brain. In the laboratory, when you remove alpha-synuclein, cells that were otherwise destined to die, survive.
In early Parkinson’s disease, Lewy bodies can be found in the olfactory region of the brain that processes the sense of smell. They can also be found in an area of the brain stem that controls autonomic function of the G.I. tract (constipation) and which also controls a very important autonomic nerve called the vagus nerve which influences the voice box or larynx (soft or low voice) and the entire cardiovascular system (dizziness and fainting).
You can also find them in a brainstem area that controls alertness and sleep called the reticular formation, and and in an area that supplies the brain with a chemical called serotonin. Depressed and anxious brains have low serotonin.
Back to clinical:
Thus, every single one of the non-motor (non-movement-related) symptoms mentioned can occur and often do emerge early in the disease, and often before any motor changes are seen. Each one can be traced to some abnormal brain region. Other symptoms related mostly to the disruption of the areas that control autonomic function include frequent urination from an overreactive bladder, and sexual dysfunction in the form of erectile dysfunction in difficulty with orgasm.
Finally, the degeneration of areas of the brain that control sleep don’t merely produce insomnia. The classic sleep disturbance seen in Parkinson’s involves falling asleep without much trouble, but waking up one to three hours later and often in a somewhat panicked state.
Three years before I had any motor symptoms, I was regularly waking up at 2 AM every night in extreme terror over the fact that I was going to die someday. I am not someone who considers myself particularly fearful about dying, and yet in those moments I was completely overcome by an overwhelming anxiety over it. Klonipin (clonazepam), a valium-like anti-seizure medication is effective at treating the terror component of early awakening.
Nightmares are also quite common in Parkinson’s, along with a disturbance referred to as RBD (REM Behavioral Disorder). In RBD patients awake suddenly from REM sleep in a dissociated ( unaware of what’s going on) and often violent state where in some cases they can even present a real danger to a spouse or other sleep partner.
I experienced RBD once about a year before my motor symptoms developed. I suddenly woke up and realized I was on top of my fiancée with a chokehold on her neck. Needless to say, this is not good for a relationship. At the time I had absolutely no understanding of what was happening to me. She had a psychological background and thus, insisted that it had to do some unconscious hostility I must be having towards her and maybe even an unconscious wish that she were dead. Sadly this lead to a cascade of events that ended in our breakup.
So in summary, a loss of dopamine producing brain cells that normally send dopamine to important areas of brain function besides those that control movement (basal ganglia), result in abnormal function in these areas which, when examined microscopically, show abnormal debris within their misfiring cells. Hence the following top 10 list.
Marshall Davidson’s top 10 non-motor symptoms of Parkinson’s disease:
1. loss in sense of smell
2. disordered sleep characterized by early awakening
4. soft or low voice
5. dizziness or fainting
6. new psychiatric disturbance, usually depression and/or anxiety, often well before development of motor symptoms
7. fatigue and EDS (excessive daytime sleepiness) that is not from medication
8. excessive urination from overactive bladder
9. sexual dysfunction seen as erectile dysfunction and/or difficulties with orgasm
10. RBD (REM behavioral disorder) in sleep
Many of these symptoms can occur as early as several years before any abnormal symptoms of movement like tremor, rigidity, slow movement (bradykinesia), and loss of balance develop. Thus, it’s important that primary care doctors who see patients first, consider Parkinson’s when a few of these warning signs start to appear, even if no typical movement abnormalities like tremor are seen.
Further, I stress to sufferers and to their family members/loved ones that what might appear to be laziness, depressive attitude, and even sexual dysfunction may have nothing to do with personal inadequacies. So often sufferers find themselves wrongly accused of self-pity, character weakness, loss in interest in a friendship or relationship, or negative thinking. Help is available and you can find methods to treat most of these including, for daytime sleepiness, stimulants (eg. Adderall (amphetamine salts), anti-depressants, sexual medications, etc. Sufferers themselves would do best to attempt to best adapt to these limitations, for instance exercising when particularly tired, and finding productive things to do during the early AM hours of lost sleep. You don’t have to live life paralyzed by fatigue and other symptoms. Just develop a sense that they’re part of the disease and adapt as best as you can.
Next: Dopadoc’s personal methods of adapting to his own non-motor limitations of Parkinson’s.