Many of the symptoms and common difficulties that can be a part of having Parkinson’s disease are often overlooked.
Many people, including professionals and family members, may not be aware of these issues. Some of these issues may get under-reported due to embarrassment. Additionally, because many of these symptoms or issues are not often thought of as having an association with Parkinson’s disease, they may not get reported (and then may be dismissed, untreated, or could lead to a wrong diagnosis).
Fortunately, some new diagnostic criteria are going to come out that may help. Even with new diagnostic criteria (that will encompass more symptoms -both motor and non-motor), there will still be professionals and family caretakers who will remain unaware of some of the issues that often go alongside Parkinson’s disease. I want to present an all encompassing picture of common and uncommonly associated issues that individuals, family members, and even some professionals (who may not have familiarity with Parkinson’s patients) to be cognizant of. I want to help those not familiar with this illness to understand that Parkinson’s disease involves so much more than impaired movements.
The most commonly associated symptoms associated with Parkinson’s disease are these main motor-movement difficulties: bradykinesia (slowness of movement), along with either (or “and”): muscular rigidity, tremor, and postural instability. These motor-movement symptoms often respond favorably to treatment with a medication containing levadopa or types of medication that promote dopamine being more available in certain areas of the brain.
As previously mentioned above, I have encountered family members – and even medical professionals – that were unaware or missed associating other manifesting issues pertaining to the clinical picture of Parkinson’s disease. I am aware that there are already many websites that have lists such as: warning signs of Parkinson’s, non-motor symptoms, late stage symptoms, uncommon symptoms, etc. Symptoms or clusters of symptoms could be indicative of other disorders (neurological and psychiatric). As a highly inclusive listing of various ways Parkinson’s disease can present, a major limitation of this list, is that it does not elaborate on factors differentiating between different types of involuntary movements or other more specifics that may indicate a disease other than Parkinson’s. Yet, I want to make sure I do my part in putting forth a beefy list, one that is fairly comprehensive (if not mostly inclusive of most manifestations) of the vast array of potential presenting issues.
The following is the list of issues that can occur with Parkinson’s disease (some commonly overlooked).
A person with Parkinson’s disease may have (or may later experience):
Lack or decrease in facial expression – because of this, some people might often ask if you are upset or comment about you not smiling as much, and you may have a decrease in blinking, as well as, you or others noticing a more wide-eyed and blank-stare
Losing your sense of smell
Swallowing and Eating issues – sometimes choking on food or difficulty swallowing – feeling that food and maybe liquids are getting stuck or having trouble going down, excessive salivation can also be a problem.
Vocal changes: mumbling, volume decrease, speaking slowly, monotone, or be hard to understand. You may stutter or you or others notice palilalia (a stutter-like repetition of certain words). You notice people start asking you to repeat things (as they couldn’t understand you).
Stiffness in neck or difficulty turning head/neck
Shoulder-locking, hesitation, difficulty reaching up.
Robotic movement at joints (i.e. movements are not smooth)
Finger twitching or finger tremor, such as a little finger
Pill Rolling action or tremor – rubbing a thumb against your first finger next to it in a circular motion – either subconsciously in a rhythmic fashion or in an involuntary vibrating way.
Difficulty with handwriting (may be smaller, erratic). You may notice that you often have trouble signing your name. Drawing a perfect circle may be very difficult. You also may have uncalibrated fine-motor movements: having certain fingers hesitate or miss keys during typing, your pointing or reach seems uncalibrated, and your dexterity seems impaired
Ratchet-like type movements when turning your wrist (at least one wrist)(and/or ankles, feet, etc.)
Other dexterity issues including frequently dropping objects, thinking you have a grip, but losing your grip or misjudging strength needed to manipulate or lift an object
Twitching – particularly in people with a history of mild tics, there may be a progression to sudden jerks of the head, arms, neck. Twitching or sudden movements of the legs or feet might also occur while lying down or positioned in a chair [note: there are differences between tics, chorea, myoclonus, dyskinesia, and dystonia – and a discussion of which is too big to discuss here, please discuss the exact nature of your involuntary movements with your physician to help rule out other types of illnesses]
Tremor – in Parkinson’s (if there is tremor), it usually begins on one side of the body (such as starting in fingers or hand, one foot, etc.). Tremor can also occur in the jaw or other body appendages
Walking issues: smaller steps, slower labored walking (may be episodic initially), possibly having one foot drag, not being able to walk on a straight line and/or episodes of a “drunk stupor” walk, numbness in feet, feeling heaviness in one or both feet, decrease in one or both arms swinging, difficulty with stopping or turning quickly. You also may develop “freezing”, which is a hesitation to resuming walking or an episode of being stuck and not being able to walk through a transitional area (door, hallway, enter a room, change from carpet to tile area, decline in ground, begging of top of stairs or escalator). Have a medical professional familiar with Parkinson’s disease observe your walk as there are ways of walking that may indicate diseases in certain areas of the brain
Cramping in legs, feet and possibly back, neck, other areas
Dystonia – If there is cramping, it may also consist of tightening, pulling, bending, or curling of body areas or appendages
Difficulty in going down a set of stairs (maybe episodic or occur at certain times of the day/evening/night)
Feeling very stiff when get up from a chair, bed, out of a car, etc.
Restless legs, difficulty holding still
Balance issues – not necessarily falling, but noticing that you respond differently to uneven surfaces or feel off-balance whenever you extend your hand to reach for something
Leaning forward or stooped posture – you may notice this when you look at photos that people had taken of you
Urination/bladder issues: leaking after urinating – sometimes a few minutes after voiding, you may have episodes of frequent urination or more frequently feeling urine urgency
Bowel changes, with constipation being common
Sleep issues: apnea (episodes of stopping breathing), difficulty turning over at night, nightly restless legs, and possibly night-time cramping, neck pain, acting out dreams, sleep walking, poor sleep, insomnia, etc.
Bruxism (teeth grinding and/or clenching – during sleep)
Word-finding difficulty, word-substitution (i.e referring to your car keys as “those car starter unlock things” or referring to your food pantry as the “closet”).
Forgetfulness and a sense of “foggy” thinking
A change in cognitive “executive functions”: decline in attention, organization, and keeping track of things as well as keeping on task
Episodes of apathy (i.e. don’t care anymore), depression, anxiety, intense panic, or other changes in mood or behavior (in later stages could include violence, some Parkinson’s medications could pose a risk of leading to compulsive behaviors such as sexual compulsions, gambling or other impulsive or risk-taking behaviors.
Periods of loss of energy (with fatigue and possibly some lethargy)– feeling totally tired and beat down
Sexual dysfunction or changes in your sex drive
Hallucinations either strong or mild, brief hallucinatory events (such as): seeing things out of the corner of your eye, or that travel rapidly across your visual field (that aren’t actually there), hearing your name called (when it wasn’t), seeing or hearing anything that you discovered was not physically present, nor visible or heard by others (visual or auditory hallucinations).
Thoughts or beliefs that are delusional, meaning that they are not based in reality (other’s point out as delusional or paranoid ways of thinking, or that you self-discover that you are having thought or belief systems that are different than your past ways of thinking and untrue or highly suspicious) (i.e. “spouse is cheating on me”, “the government is watching me”, “they are spying on me”, focusing on conspiracies, etc.).
Those reading this list should take into consideration the following:
I am not a doctor and can NOT diagnosis Parkinson’s, nor any health condition including the similar movement disorder related diseases. This list is not intended to be diagnostic, not does it constitute any medical advice. The information presented is based on my current experiences in having, reading about, and talking to other’s who have Parkinson’s disease (and Parkinsonisms). Therefore, some professionals, as well as some individuals who have Parkinson’s, may disagree with some or all of the content in this writing or on my website.
If you are exploring a potential diagnosis for yourself or someone that you care about, is very important for you to realize that: if someone has one, a few, or even all of these issues, that does not mean that it is necessarily Parkinson’s disease. Having none of these or a very few of these issues also does not mean that someone does not have Parkinson’s disease (but if someone doesn’t have any of these then that’s a good sign, hopefully!).
Sometimes these issues can come and go at times, thus the inconsistency may make it seem to observers or misinformed professionals that such issues are being exaggerated or feigned – even on medication, sometimes there are breakthrough “off” periods.
Those who have been diagnosed with PD may not have some, many or maybe even most of the above (some may not have tremor, sleep issues, problems swallowing). Even if you hear about issues being associated with Parkinson’s disease such as swallowing problems, sleep issues, cognitive problems, and so forth, that doesn’t mean that every person with Parkinson’s will develop these, nor will every person progress at the same rate.
I strongly believe that someone concerned about having Parkinson’s or struggling to seek evaluation and treatment, should be evaluated by a Movement Disorder Specialist (a neurologist with specialized training in detecting, evaluating, and treating movement disorders such as Parkinson’s disease). Unfortunately, many people do not have access to a local movement disorder specialist, in which case I hope that you see a neurologist who has experience in working with those in your age group that have Parkinson’s or related conditions, and keeps up with the latest medical information.
At the time of this writing, there is not a 100% reliably test for Parkinson’s disease (it still remains largely a clinical diagnosis). Any of these issues (or a combination of these) can result from another condition that mimics (or appears to be) Parkinson’s disease. I can not list all of the exhaustive possibilities, but some of these conditions may include: vitamin deficiencies, exposure to toxins/poisons, allergic reactions, multiple sclerosis, ALS, Alzheimers, Huntington’s disease, Benign Essential Tremor, cancers, metabolism issues, etc.
Some people who have anxiety issues or disorders (or psychological trauma from life experiences causing health concerns), particularly those with somatic fears concerning having a progressive (or potentially life threatening) illness, and then may have stumbled onto this writing to get some information about some or your symptoms or health concerns. If this may be the case for you, I want you to be aware that it in my experience from working for many years as a psychotherapist, that those with health fears have a tendency to glance through such a list such as the one above, and worry/obsess/ruminate with thoughts such as “Oh no! That is me! I have this horrific disease!” Keep in mind that if you are young and otherwise healthy, Parkinson’s disease is estimated to occur in less than 50 people per 100,000, for those under the age of 50. For people under the age of 40, the prevalence is estimated to be even less than that, at 5 people per every 100000. Before you visit a bunch of websites and self-diagnose, please work with a professional at ruling out other things first. As previously mentioned, seeing a Movement Disorder Specialist would be a good idea if your doctors have ruled out other diseases/disorders. Even if you do have Parkinson’s disease, it is usually slowly progressive and not necessarily a “death sentence”.
I deliberately mixed (without separating) the motor and non-motor issues because, when these aspects are separated, the tendency to overlook non-motor symptoms can be easily overlooked.
I deliberately avoided grouping symptoms by the progression or stage that is typically associated with the symptom. Why? I did this because Parkinson’s disease is uniquely individual – someone in an early stage may experience some of the swallowing, cognitive, or other symptoms commonly thought of with advanced Parkinson’s disease.
I did not differentiate between common vs uncommon symptoms because many symptoms may be unreported due to embarrassment (i.e. sexual dysfunction, Parkinson’s related psychosis, bladder and bowel issues). A problem with presenting the list in the fashion that I did, is that it may lead to some confusion on the part of readers of not knowing where the dividing line between one condition and a totally different condition with overlapping symptoms is drawn, (i.e. readers assuming that Lewy-Body Dementia is the same as PD, or think that PD is the same as Huntington’s, etc.). However, there is some overlap in symptoms of many different disease, and once again, this writing is not meant to be diagnostic. Take the example of psychosis: even though psychosis (hallucinations and delusions) may be more indicative of a condition such as Lewy Body Dementia, it may be under-reported in PD, therefore I want to include issues with psychosis on this list.
In summary, the purpose of my writing is to remind, evoke conversation, and spread the word that these additional non-motor, and non-motor symptoms, should not be overlooked. I did so despite my own hesitation in presenting such a long, simplified, and vague list, risking that some may falsely conclude that every single issue that a person with Parkinson’s experiences is solely due to his or her Parkinson’s disease, or others believing Parkinson’s is a broad “catch all” type illness with “everything going wrong” (even though many people with Parkinson’s may not have nor experience many of the items on this list). Despite these limitations and my hesitation, I hope that this list will be helpful to someone.
Keep on! – C.