Chapter 2: Symptoms of Parkinson’s
Prior to designing any type of exercise intervention program, it is vitally important to have an in depth understanding of common symptoms and how they may affect a person. In addition, it’s important to know that not every person with Parkinson’s gets every symptom as each person with PD is uniquely affected by the disease.
A few symptoms of PD have already been discussed in this book, but now it’s time to go into more detail. In this chapter, we will touch on four areas; common early symptoms (pre-diagnosis), common non-motor symptoms, additional symptoms and concerns, and motor symptoms. I could write an entire book about symptoms alone. However, there are countless books about Parkinson’s disease that are already available and many of them are very informative. The amount of published research on Parkinson’s is absolutely mind-boggling. Many of these publications go into extreme detail on symptoms. While I could go into great detail in this book, my greater intention is to provide the reader with extensive intervention strategies and techniques to help the person with Parkinson’s to slow disease progression, manage disease symptoms, reduce falls, and improve overall quality of life. With that said, let’s touch on several common symptoms, including a few that may be new to you.
By the time a person is diagnosed with Parkinson’s, the disease has already been a part of their life, perhaps for many years. Diagnosis generally occurs as a result of a symptom or symptoms that have manifested, causing a diminished quality of life, i.e.; an uncontrolled finger tap, resting tremor, compromised balance, recurrent falls, loss of sense of smell, etc.
The period of time between first symptoms and diagnosis tends to vary greatly for many reasons. Here are a few possibilities:
- An early symptom isn’t recognized by the person with PD, their family or friends
- The person with PD knows something is wrong, but is in denial and won’t go to the doctor
- Primary care physician doesn’t recognize or ignores symptoms and doesn’t refer the patient to a neurologist (unfortunately, this happens too often)
- A neurologist diminishes significance of symptoms and says nothing is wrong (unfortunately this happens sometimes, as well)
That is just a partial list of possibilities I’ve seen. However, in fairness to the medical community, it is also important to realize that coming to a diagnosis can be very complicated. A tremor could be a result of a multitude of issues not related to PD, i.e.; positional dystonia (something I personally experience in my left hand and arm), an essential tremor, alcohol withdraw, or a multitude of other issues. Certain symptoms can mimic Parkinson’s disease, such as Multiple System Atrophy, Normal Pressure Hydrocephalus, Dementia with Lewy Bodies, Corticobasal syndrome, Progressive Supranuclear Palsy, or even an Essential Tremor. (Barmore, n.d.)
Another reason for a delay in diagnosis may be a lack of education about PD in the local medical community or lack of access to medical care altogether. I’ve spent a great deal of time in communities around the world helping to educate people from the medical, physical therapy, fitness training, and general population communities. Our goal is to give them a better understanding of Parkinson’s, how it may affect a person, interventions to increase the possibility of slowing disease progression, and strategies and techniques to improve movement and quality of life.
Awareness and education are the key. They are of paramount importance.
In November 2017 I met Dr. Dale Bredesen, author of one of my favorite books, “The End of Alzheimer’s.” If you don’t already have this book, I highly recommend buying it. Dr. Bredesen is a professor of neurology at the Easton Laboratories for Neurodegenerative Disease Research at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA).
During Dr. Bredesen’s presentation, I was enlightened to the fact that Alzheimer’s and Parkinson’s (and other diseases) can live in the gut for 10-20 years prior to manifesting into any type of visible symptom. While I had some knowledge of the gut-brain connection in relation to various diseases, this new information was a complete game changer for me. This led to me furthering my learning about some of the earliest symptoms that may indicate a person having Parkinson’s disease.
Toronto based neurologist, Dr. Anthony Lang is one of the most well known and highly regarded neurologists in the world. In a 2018 presentation, Dr. Lang talks about the very earliest symptoms we may see that can indicate a potential pathway to developing Parkinson’s. Let’s take a look.
Earliest symptoms (pre-motor symptoms)
In the above-mentioned presentation, Dr. Lang talks about ‘The Iceberg of Parkinson’s” with the “tip of the iceberg” being what is typically seen in a clinical setting, i.e.; motor symptoms. Below the tip of the iceberg are the pre-physiological symptoms which warrant additional research. This pre-motor group of symptoms include things like loss of sense of smell, depression, autonomic dysfunction, cognitive difficulties, and more. (Lang, 2018)
Acting out dreams (REM behavior disorder): During REM (rapid eye movement) sleep, when dreams occur, the body should be in a state of partial paralysis. Our heart keeps beating and our lungs keep breathing. The body should be atonic or without muscle tone. The brain turns off movement. Movement should be minimal to none during REM sleep. REM behavior disorder (RBD) happens when the brain doesn’t turn off movement and the person with PD acts out their dreams. This can be dangerous if they have a bed partner. Leg movement may involve kicking. Arm movement can involve swinging or punching. If the partner is within range, they will be kicked or punched. This leads to potential injury for both people.
RBD is often an early indicator of Parkinson’s. In a 2014 study, 174 patients with RBD showed that:
- 33% had a neurodegenerative disorder after 5 years
- 76% after 10 years
- 91% after 14 years (J. ANDREW BERKOWSKI, 2017)
Restless leg syndrome (RLS): Research tells us that RLS may be another early indicator of Parkinson’s disease. Evidence pointing towards a link includes response to dopaminergic agents in PD and RLS, suggestive of underlying dopamine dysfunction in both conditions. The extrastriatal dopaminergic system, in particular altered spinal dopaminergic modulation, may be variably involved in PD patients with RLS symptoms. In addition, there is now evidence that the nigrostriatal system, primarily involved in PD, is also affected in RLS. (Tan, 2012)
Anosmia (loss of sense of smell)
People with PD say: At our workshops we ask people with Parkinson’s if they experienced a diminished sense of smell prior to any motor symptom or diagnosis of PD. Countless times, the answer is “YES” with many reporting that this happened many years prior to realizing any other noticeable symptom.
Research tells us: that anosmia is commonly experienced prior to a PD diagnosis. In addition, olfactory impairment may aid in the identification of “pre-motor” PD, which is essential for the conduct of neuroprotective trials. (Michelle E. Fullard, 2017)
Hyposmia (loss of sense of smell)
Research tells us: Hyposmia us a condition related to anosmia. Up to 85% of patients with PD have olfactory loss, and this is measurable very early in disease (Jennifer G. Goldman, 2015). Hyposmia may predate other clinical symptoms of PD by at least 4 years (Fahn, 2011, p. 80).
Diminished arm swing: In our workshops, caregivers (and occasionally the person with PD) often report the presence of diminished arm swing (typically unilateral in the beginning) for up to many years before diagnosis.
Prodromal motor features in Parkinson’s disease likely develop gradually, years before diagnosis. To be able to treat the disease earlier than is currently possible today, recent research has focused on the early identification of people who are likely to develop PD in the future. Reduced unilateral arm swing, a well-described feature of PD, was observed in healthy adults who have an increased risk of developing PD. (Anat Mirelman, 2016)
- Movement professionals: Reduced reciprocal arm swing compromises movement. Later in the book, we will discuss gait training techniques to improve reciprocal arm swing, which in turn will help to improve posture and movement.
Chronic constipation: Chronic constipation can be an indicator of a few potential issues, including PD. As with olfaction, a major difficulty with the constipation is specificity, as constipation occurs in up to 25% of the general population, ensuring a low positive predictive value. (Jennifer G. Goldman, 2015)
There is increasing evidence that constipation can identify prodromal PD. Clinically, there is also prospective evidence that constipation can precede PD. Consistent with their findings in incidental Lewy bodies disease (iLBD), the Honolulu Asia Aging study found that men with bowel movement frequencies <1 per day were at 2–5-fold increased risk of developing PD in the future. (Jennifer G. Goldman, 2015)
Non-motor symptoms (and various facts)
In the beginning of this book, we mentioned that much of our information and intervention strategy is based on evidence-based research. We also mentioned that we teach and share non evidence-based information, as well. In this section, we will discuss several common non-motor symptoms along with various facts of interest. This list could be extended greatly, but again, our primary focus of this book is directed towards intervention strategies.
The following description of symptoms will include research with citations (listed as “Research tells us”) along with experiences shared with me by caregivers and people with Parkinson’s (listed as “People with PD say”). Under certain items, I will include special notes for fitness trainers, movement specialists, and physical therapists (listed as “movement professionals”).
I like research, but I love stories because they come from real life experience. There’s nothing more powerful than hearing directly from a person with PD or caregiver about how they are affected by symptoms of PD.
People with PD say: All over the world, when we ask about depression, we get an overwhelming response saying, YES, we currently experience or have experienced depression. There are a multitude of possible reasons for this. For example, we often hear about people who like to go out to lunch or dinner, but they’re concerned about falling or perhaps spilling food because of a tremor or dyskinesia. Instead, they stay home. Their social life can be negatively impacted, and this can be very depressing.
Research tells us: Major depression is present, at any given time, in 20-40% of PD patients, several times the prevalence in the general population. In addition, depression may precede the diagnosis of PD (A, 2006).
Movement professionals: Depression can significantly affect how a person moves, especially when coupled with anxiety and other symptoms. Quality of movement almost always diminishes with depression. Always think safety first and program accordingly based on how your client is feeling. If you can’t get a good read on how they’re feeling, don’t be afraid to ask. This will help you to help them more safely.
People with PD say: Anxiety is common among the PD population. This often leads to exacerbated tremors, freezing, difficulty moving, and increased falls and fall risk.
Research tells us: In a multicenter study of 1072 consecutive patients with PD in 55 Italian centers, the so-called Priamo study, 56 % reported anxiety (Fahn, 2011).
Movement professionals: If you sense anxiety in your client, be extra cautious. Anxiety can exacerbate other symptoms and increase fall risk. Again, if you can’t get a good read on how they’re feeling, don’t be afraid to ask. This will help you to help them more safely.
People with PD say: Occasionally, we hear from people with PD about having a lack of interest, enthusiasm, or concern. More often, we hear reports about apathy in people with PD from their caregivers.
Research tells us: Apathy in Parkinson’s disease is more likely to be a direct consequence of disease related physiological changes than a psychological reaction or adaptation to disability. Apathy in Parkinson’s disease can be distinguished from other psychiatric symptoms and personality features that are associated with the disease, and it is closely associated with cognitive impairment. These findings point to a possible role of cognitive mechanisms in the expression of apathy. (G C Pluck, 2002)
Movement professionals: Apathy tends to manifest the appearance of lack of interest or enthusiasm. You may find it necessary to use extra cueing or motivation of some type to increase engagement of the client.
Hallucinations and delusions
People with PD say: When a person knows they’re hallucinating, it seems that it’s seldom a terrifying experience. At a workshop in Boothbay, Maine in July of 2017, a gentleman shared about hallucinations he often has, explaining that when he looks at fire hydrants, they appear to him as dwarfs who wave to and talk to him. These hallucinations don’t frighten him as he is aware that he is hallucinating. Instead, he has fun watching the imaginary dwarfs. On the contrary, a hallucination can be completely debilitating as in this story from a workshop attendee in England. She often sees “worms” in her food, causing her not to eat. This was a recurrent problem for her until she was given medication to help. Another lady in Monterrey, Mexico told of the most frightening experience of her life. She woke in the middle of the night to see a man allegedly sitting at the foot of her bed. He acted as if he was going to harm her. She woke her husband and tried to show him the man. It took several minutes for him to explain that there was no man in the room and she was safe. When people are unaware that they are hallucinating, it can be frightening or even dangerous, depending on the hallucination and what action the person with PD takes.
Research tells us: Hallucinations and psychosis can be a part of Parkinson’s disease and are considered to be a nonmotor symptom or a neuropsychiatric complication of the disease. Hallucinations of different modalities and delusions can occur beyond the common visual hallucinations. Minor hallucinations can occur early in the course of the disease sometimes predating the onset of motor symptoms. Visual hallucinations are the most common sensory modality of hallucinations in Parkinson’s disease psychosis. Auditory, olfactory, tactile and gustatory hallucinations can occur and tend to coincide. Treatment is with reduction of dopaminergic medications and possibly addition of an antipsychotic agent or pimavanserin. (Karen Frei, 2017)
Movement professionals: In your initial consult with a client or patient prior to your first session, I highly recommend having them fill out a questionnaire (my enhanced PAR-Q is available at the book support website). Included on this form should be a question asking if they experience hallucinations, and if they do, are they aware that they are hallucinating? Experiencing a hallucination during a training session may not cause an issue. At the same time, depending upon the person and what type of hallucinations they tend to have, it could be devastating. You need to know this type of information.
Dementia in Parkinson’s disease: There’s a lot of research addressing the relationship between dementia and PD. In this study, the point prevalence of dementia in PD is close to 30% and the incidence rate is increased 4 to 6 times as compared to controls. The main risk variables are higher age, more severe parkinsonism, in particular rigidity, postural instability and gait disturbance, and mild cognitive impairment at baseline. (Murat Emre MD, 2007)
People with PD say: Sleep problems are common in the PD population. We often-times hear stories of problems falling asleep, staying asleep, and waking up early. This can exacerbate other issues and diminish quality of life. At a recent workshop, a gentleman shared with us about his problems driving a car when he is sleep deprived. His judgement is impaired, and he feels he’s a danger on the roads. He now drives only when he feels completely rested, which is seldom. One of my clients often tells me how her motor symptoms, especially her tremors, are exacerbated when she is sleep deprived. Sleep deprivation can increase fall risk.
Research tells us: Sleep disorders are common in PD, and available treatment options are limited. Many of these sleep disorders have specific differences when co-expressed with PD compared with the general population. Insomnia is frequent in PD. It is associated with other multiple PD sleep comorbidities and leads to sleep fragmentation that is the most common sleep disturbance in PD. (Priti Gros, 2018)
Movement professionals: Always inquire with their clients at the beginning of a session to find out if the client is rested and proceed with appropriate exercises and movements based on how the client is feeling.
Behavioral / Impulse Control Disorders (ICD’s)
People with PD say: Impulse disorders such as gambling, shopping, and hypersexuality are not uncommon in the PD population. In England, a workshop attendee told us a story about a binge shopping experience. She wanted to buy a purse, so she went on eBay. Before she knew it, she had bids on 97 purses. She won 79 of those bids. Her husband asked, “where’s all the money going?” She explained and they went to her neurologist. The doctor adjusted her dosage of Levodopa and the urge to shop went away. At workshops around the world, we’ve heard many stories of this type in addition to stories of hypersexuality and gambling.
Research tells us: The first step in the management of ICDs and related disorders is counselling and surveillance to facilitate early diagnosis and treatment. Dopamine agonist taper and substitution of other classes of PD medications can be highly effective in some patients. (M Samuel, 2015)
People with PD say: In our workshops and with our PD clients, we often-times witness the occurrence of orthostatic hypotension in people with PD. This tends to happen when going from a seated to standing position, but much more-so when going from lying on the floor (after floor exercises) to standing. Clients report a feeling of dizziness or feeling unsteady.
Research tells us: The frequency of orthostatic hypotension in Parkinson’s disease is high and it is possible to establish a clinical rating scale which could be used to assess the effects of drugs employed in the management of orthostatic hypotension. (J M Senarda, 1997)
Movement professionals: Be sure to create a safe environment for your client. The degree of dizziness will vary from person to person. It will even vary for the same person depending on several factors. When getting up from the floor, it may be advisable to move to a seated position prior to standing. A short, seated pause before standing can be helpful. No matter what the case, and especially with a new client with whom you’re not familiar, be sure to create a safe zone. Orthostatic hypotension greatly increases fall risk. We want to avoid a fall at all costs.
People with PD say: We have heard many stories about loss of bladder control, including the urge to urinate often, but not being able to.
Research tells us: Bladder dysfunctions are quite common in Parkinson’s disease. They may occur at any stage of the illness and get worse with advancing and aggravating disease. (Jost, 2013)
Hyperhidrosis (excessive sweating)
People with PD say: While we don’t hear many reports of this, it is a part of life for some people with PD.
Research tells us: Chronic hyperhidrosis appears to be associated with a dysautonomia dominant subtype in PD patients, which is also associated with sleep disorders and a higher rate of dyskinesia (fluctuation-related hyperhidrosis). (van Wamelen DJ, 2019)
Movement professionals: I’ll exaggerate for a moment. I have a client with Hyperhidrosis. It almost seems that if I even LOOK at him, he starts sweating profusely. Now, this isn’t exactly the case, but he sweats profusely at every workout session and he is always at a high level of function. If you have a client or patient who sweats profusely, it doesn’t hurt to ask how they’re feeling, although typically, we find that this does not affect what we do in a training session. So, don’t be alarmed when you see this.
People with PD say: People with Parkinson’s often-times talk about visual disturbances of various natures. Reports of depth perception and double vision are what we hear about most often.
Research tells us: Visual disorders like double vision, dry eyes, or visual field defects are common but often unrecognized in Parkinson’s disease (PD) . Some visual disorders in PD are linked to retinal dopamine depletion, others to decreased dopaminergic innervation of the visual cortex. (Carlijn D.J.M. Borm, 2019)
Movement professionals: Safety first! Get to know your patient or client. You may notice that they slow down or freeze when approaching a doorway, change in floor surface, or an object such as a chair or couch they wish to sit on. Lack of dopamine in the retina can cause depth perception and visual contrast issues. You may witness smooth movement up until 3-4 steps before the doorway or chair. They need to slow down and figure out how far the object is from them. In addition, rotating to sit on a chair should be monitored carefully as they may not be properly aligned with the chair when they take a seat. This may lead to falling off the chair. Rotating to sit on the chair is another factor that can increase fall risk as rotations can trigger freezing of gait which again increases fall risk.
People with PD say: Pain is something we experience often. One common painful experience is the dystonic foot clench. Imagine you’re standing and intentionally digging your toes down into your shoes or into the floor. Now imagine that you’re not intentionally doing this and instead, your foot does this on its own. It may last minutes or hours. Later in the book, we describe intervention techniques to help relieve this type of pain. Also frequently reported are various types of specific pain in addition to overall generalized pain.
Research tells us: Pain is a common non-motor symptom of Parkinson’s disease, frequently undeclared and, consequently, undertreated. Nowadays, it is well known that different types of pain can be recognized in PD patients, a fact that makes appropriate assessment and management of this symptom difficult. (Pablo Martinez-Martin, 2017)
Movement professionals: Know your client’s pain tolerance. A certain level of pain or discomfort is likely to occur in certain exercises during a training session. Pain is a very complicated thing. Trainers especially, it is not within your scope of practice to treat pain. Be mindful of your client’s pain. Ask if they’re in pain prior to your session. As professionals, we must recognize the difference between a normal level of discomfort during certain exercises or movements, and inappropriate pain. If something hurts “wrong” – stop and move on to another exercise.
Reduced Facial Expression
People with PD say: With our clients and at our workshops, we frequently see people with PD who have masked face or reduced facial expression. We can see this because the expression on their face barely changes at all throughout a session or throughout the entire weekend at a workshop.
Research tells us: PD patients have some distinctive features of facial movement abnormalities, i.e. reduction of facial expression and eye blink rate. The reduction of automatic and controlled expressive movement of facial musculature creates an appearance of lack of interest in the surrounding environment (masked face). (Tao Wu, 2017)
Movement professionals: In my early days of working with people with PD, I went to a group fitness class led by an amazing fitness trainer. 18 people with PD were in the class. 15 of them weren’t smiling. In fact, I thought they were angry that I was there! The instructor explained to me that diminished facial expression isn’t uncommon in people with PD. So, don’t worry if you’re working with someone and not getting a good read on how they’re feeling because you see little to no facial expression. If you wonder how they’re feeling, ask them. As you get to know your clients and patients, you’ll be able to read them better and you’ll know when they’re happy or not. Very subtle signs, like the look in their eyes will tell you all you need to know.
People with PD say: with depression being one of the top non-motor symptoms of PD, we often hear about the feeling of hopelessness or feeling defeated. Any number of issues may contribute to feeling sad, including a recent fall, hallucinations, difficulty moving, eating, swallowing, sleeping and more.
Research tells us: Among emotion disturbances, the most common is depression, the second is anxiety. It has been found that the detection rate of depression using the Hamilton Depression scale was higher than the NMS (non-motor screening scale). This might be due to depression in PD usually being accompanied by numerous somatic symptoms. Thus, the Hamilton Depression scale exhibited superiority in recognizing depression because it’s a more complicated questionnaire designed to pay attention to somatic symptoms. PD patients may present depression early in the Braak stage II when Lewy bodies deposit in the dorsal raphe nucleus and locus ceruleus. The probable biochemical mechanisms are related to the serotonin system, also mixed with norepinephrine and dopaminergic abnormalities in the limbic lobe. (Tie-mei Zhang, 2016)
Movement professionals: Depression increases the risk of falling. To the best of your ability, be mindful of your client’s emotional state. If you notice they seem sad, you will likely observe more of a stooped over posture. This posture also increases fall risk. Additional cueing may be helpful in improving movement. Be sure to program and cue accordingly.
People with PD say: At every workshop, we hear about cognitive issues affecting people with PD. Examples include memory problems, difficulty following directions or planning a task, processing information, following cueing, and more.
Research tells us: People with Parkinson’s disease and their care partners frequently report cognitive decline as one of their greatest concerns. Mild cognitive impairment affects approximately 20–50% of people with PD, and longitudinal studies reveal dementia in up to 80% of PD. (Jennifer G. Goldman B. A., 2018) Cognitive impairment is frequent in Parkinson’s disease, and studies of incident Parkinson’s disease cohorts affirm that cognitive dysfunction is no longer solely a complication of advanced disease (Jennifer G. Goldman M. M., 2015)
Movement professionals: Cognitive issues can cause difficulties during a training session. We often find that a person may need extra cueing to ensure optimal execution of a movement. They may not hear you the first or second time you cue. Speaking to quickly may cause issues in comprehension of what you are saying. This may vary from day to day with the same client. As I always say, safety first. Get to know your client. Take your time and establish communication as thoroughly as possible. Don’t be afraid to repeat yourself and/or demonstrate the exercise or movement several times. Visual demonstrations can be very helpful and are absolutely necessary at times. You may need to do this to be effective in your communication.
Research tells us: It is now widely recognized, however, that PD-related pathology affects multiple central nervous system neurotransmitters and pathways. Communication and swallowing functions can be impaired even in the early stages, significantly affecting health and quality of life. (Michelle R. Ciucci, 2015)
Speech / Voice Changes
People with PD say: These changes are common. In particular, people with PD and their caregivers will report that their voice projection has gradually diminished. They speak very softly. In addition, articulation may present problems for some people.
Research tells us: Disruption of speech motor control is a very frequent and at the same time very disabling symptom of Parkinson’s Disease [Duffy, 2005]. It is estimated that over 90% of patients with Parkinson’s disease develop a speech disorder known as hypokinetic dysarthria. (Anneliese B. New, 2015)
Movement professionals: At our workshops and training sessions, we often meet people with PD who speak very softly and/or have difficulties articulating words. Later in this book, we will introduce interventions for these issues.
Muscle Cramps and Dystonia
Movement professionals: We discussed this previously when talking about pain. Again, know your client’s pain tolerance. Recognize the difference between a normal level of discomfort during certain exercises or movements, and inappropriate pain. If something hurts “wrong” – modify the exercise or stop and move on to another exercise.
Fatigue and Loss of Energy
People with PD say: We often hear reports of loss of energy and fatigue. People with Parkinson’s tell us it may be a result of sleep deprivation, transition between “off and on” periods, or general anxiety.
Research tells us: PD patients with severe sleep disturbances tend to suffer from fatigue. Levodopa improved fatigue only in PD patients with mild depression or no depression, implying that dopaminergic medication is required, but not sufficient, for fatigue suppression in PD patients with moderate or severe depression. Thus, restoring serotonergic neurotransmission as a combination therapy may offer a better strategy for the treatment of fatigue in these patients. (Fu R, 2016)
Movement professionals: Know your client. Inquire prior to every session and inquire about how they’re feeling. Did they sleep well? Are they feeling rested? What is their level of anxiety? Knowing these answers can help to make for a more successful outcome at every session. In many cases, after you get to know and better “read” your client or patient, you will KNOW how they’re doing. Adjust programming accordingly. Excess fatigue will increase the risk of falling. Safety is always paramount.
Now that we’ve covered this partial list of non-motor symptoms, I hope you have gained a better understanding of how a person with PD may be affected. Parkinson’s is a very complex disease. To this day, I continue to hear of various ways the disease affects people that I never knew of or could have imagined. Here’s a short list of tasks that can become a real challenge
- zipping a zipper
- brushing hair
- putting on makeup
- putting a key into a lock
- drinking from a cup
- eating / using silverware
- getting dressed
- brushing teeth
- typing / texting
- taking a shower
- using a bathroom
- getting in and out of a car
- making turns / rotations
- rolling over in bed
- getting out of bed
- getting up from a seated or lying down position
The bottom line is this: quality of life is affected. These tasks may become difficult and frustrating and the gradual loss of ability to do these things may cause great anxiety or lead to depression.
Part of our intervention will include techniques and strategies to help temporarily diminish symptoms that make these tasks difficult.
Additional physical symptoms and concerns
Let’s look at a few additional symptoms that are common in the PD population and increase fall risk.
Shorter stride length, asymmetrical stride, shuffling of feet
People with PD say: They may notice changes in gait and stride far before diagnosis. In fact, we often hear from caregivers that they notice differences in stride before the person with PD notices. As mentioned above, diminished arm swing (usually affecting one side more than the other in the beginning) may be one of the first indicators of Parkinson’s. A person who is educated as to what to look for may notice this before a person with PD or caregiver notices. Nevertheless, decreased arm swing is common as is asymmetrical stride, asymmetrical stride length, and shuffling of feet.
Movement professionals: Having an even or a symmetrical stride is of paramount importance to realize optimal movement, reduce fall risk, and avoid injury. When we walk or run, our stride should be rhythmical and even, like the beat of a metronome. The moment stride becomes uneven or shuffly, assessments and corrective intervention are necessary. We will cover all of this in great detail.
Diminished trunk and hip rotation during gait
People with PD say: While this often goes unnoticed for what it actually is, people with PD and caregivers often see this as generalized stiffness. They’re probably correct as rigidity, among other issues will likely cause a lack of proper rotation in the hips and trunk.
Movement professionals: We know that our body includes many fascial lines, and in some way, shape, and form, everything is connected to everything else. For example, your right hip and leg is fascially connected to your left shoulder and arm and vice versa on the other side. When your right leg steps forward, your left arm should swing forward. At the same time, your right hip should rotate forward slightly while the left side of your trunk rotates forward during this particular movement. These fascial slings (anterior and posterior) help us to move optimally. We will later address interventions for gait issues.
Freezing of gait (FOG)
People with PD say: Some people with PD never experience freezing of gait, but many experience it often. FOG is when the feet won’t move. Some describe it as the feeling of feet glued to the floor. People with PD report many triggers that cause FOG; surface changes on the floor and going through doorways (often related to visual depth perception or contrast issues), rotations or turning, distractions, and obstacles in their pathway. Akinesia (defined in the section on motor symptoms) often plays a role in this. People with PD often report that when they are standing and want to take a step, they can’t. They’ve temporarily lost voluntary control of movement. This is akinesia, which we will discuss in more detail later in this chapter.
Movement professionals: Once again, you want to know your client. If they are prone to experiencing freezing, their risk of falling increases. Let’s look at an example. A person with PD is walking and gets distracted or comes upon a surface change on the floor and suddenly, their feet stop moving. They are frozen. Here’s the dangerous part of things; they are moving and have momentum and the feet get stuck. This means their center of mass (upper body) also has momentum. If the center of mass passes too far over the feet too fast, a fall is almost imminent unless they can quickly move a foot to break the fall.
People with PD say: Rotations often present as an issue for people with PD. This is something we hear about frequently. Here are some examples;
- Rotations cause freezing of gait
- Spatial disorientation
- Balance and stability issues
- The feeling of being unstable or insecure in making the rotation
Movement professionals: As mentioned in my interview with Toronto based neurologist, Dr. Alfonso Fasano (in our “Falls and Parkinson’s interview), rotations are often a trigger for freezing of gait. You will learn more about this in the next chapter.
People with PD say: A stooped over posture is common in the PD population, yet people with PD aren’t always aware if they have this type of posture. It may be noticed by the caregiver or others first.
Movement professionals: A stooped over posture will compromise optimal movement. We will be demonstrating multiple techniques and strategies to improve posture.
When you look up Parkinson’s disease motor symptoms, you’ll almost always see four listed; resting tremor, bradykinesia, rigidity, and postural instability. While these are known as the four classic motor symptoms, there’s another symptom I’m adding to the list because it is uniquely different, akinesia. I previously mentioned a 2018 presentation given by Dr. Anthony Lang (Toronto Western Hospital). In his presentation, he talks about akinesia as a fifth motor symptom of PD. Let’s go through each of the five motor symptoms.
Resting tremor of a limb
People with PD say: For many with PD, this is the first motor symptom that appears. It starts on one side of the body and usually gets worse as time goes on. It may eventually move into the other side of the body. People with PD tell us that writing is generally one of the first tasks they have difficulty with. The tremor can cause a multitude of issues as previously mentioned. While the tremor presents some issues, when it comes to movement, people with PD will tell you that it’s the least debilitating of all motor symptoms. It’s the most noticeable because you can see the involuntary movement, but other symptoms present more of a challenge for people with PD during movement. It’s also important to know that not everyone with PD gets a tremor. Some people never experience a tremor and every person is uniquely affected differently.
Research tells us: Patients with postural instability and gait difficulties (PIGD) are significantly more predisposed to falls than those who are tremor dominant. (Rudzińska M1, 2007)
Movement professionals: see summary at end of chapter
People with PD say: Many people with PD experience rigidity. We see it with our clients and with workshop attendees all over the world. They will be the first to tell you that rigidity can cause challenging problems; rolling over in bed, bending over to pick something up, driving a car (especially looking both ways at a stoplight or intersection when they have difficulty turning their head), and more.
Research tells us: Rigidity is recognized by resistance shown to passive manipulation to limbs. This resistance may limit range of motion around the neck, elbows, wrist, knees, and ankles. (Fahn, 2011, p. 3)
Movement professionals: see summary at end of chapter
People with PD say: We see it and hear of it often. People with PD who experience akinesia have the feeling of their feet being glued to the floor. This was the description given to us by a workshop attendee in Argentina. The will to move the feet and walk presented great difficulties.
Research tells us: Akinesia is a major manifestation of Parkinson’s disease (PD) related to difficulties or failures of willed movement to occur. (Charlotte Spay, 2018)
Movement professionals: Later, we will discuss many strategies to work with akinesia. Also see summary at end of chapter.
People with PD say: Bradykinesia is a classic motor symptom often reported by people with PD. However, remember that every person with PD is uniquely affected differently. For example, my friend, Joan (who’s writing immediately follows this chapter), doesn’t have bradykinesia nor does she experience akinesia, rigidity, or a tremor. At the same time, we often meet people with PD who experience this symptom. They move slower than they used to.
Research tells us: Bradykinesia is a classic movement deficit of Parkinson disease and is defined as decreased amplitude and speed of movement. (Leland E Dibble, 2016)
Movement professionals: Later, we will discuss strategies to work with bradykinesia. Also see summary at end of chapter.
People with PD say: People with PD who experience this symptom report increased challenges with balance and stability in addition to an increased number of falls. Speaking of my friend, Joan again – postural instability was her only PD motor symptom. When I met her, we went through various movement and neurological assessments, and a complete training session. There was no presence of tremor, akinesia, bradykinesia, or rigidity. She could move quickly and at will. However, when observing her movement and after looking at her fall journal (something I recommend all people with PD keep), it was evident that all falls (over 15 falls within an 18 month period) were due to postural instability (and likely coupled with various non motor symptoms, including cognition and visual challenges). Postural instability is a big deal and responsible for more falls than all other motor symptoms combined.
Research tells us: Postural instability is one of the most disabling features of Parkinson’s disease. Many factors contribute to balance impairment of Parkinson patients, including disturbed postural reflexes and poor control of voluntary movement. Additional factors which place Parkinson patients at risk for falls are side-effects of medication (dyskinesias), the poor response of postural instability to antiparkinsonian medication, orthostatic hypotension, gait abnormalities, muscular weakness in leg muscles and superimposed age-related changes such as reduced peripheral sensation. (B.R.Bloem, 1992)
Movement professionals: See summary at end of chapter.
If you didn’t know it before, you certainly know it now – Parkinson’s is a very complex disease. We primarily talked about individual symptoms in this chapter. Imagine multiple symptoms grouped together and how various combinations can affect movement for a person with PD!
Just imagine anxiety coupled with akinesia or freezing of gait. Research shows that anxiety can worsen other symptoms, and this can lead to more difficult challenges in movement, compromised balance and stability, and an increase in fall risk.
If a person has tremors, we know that anxiety often leads to exacerbated tremors. This affects fine motor skills and as a result, quality of life is diminished.
In turn this may lead to depression, feeling defeated or hopeless, more anxiety and as the circle of events continues, a further diminished quality of life. Like Dr. Alfonso Fasano said in my interview with him: do falls cause depression or does depression cause falls? They likely feed each other as do the combination of symptoms and events mentioned above.
Movement professionals: As you can probably imagine, any combination of motor and non-motor symptoms can cause balance and movement issues. I repeat what bears repeating: SAFETY FIRST! Know your client. Know their challenges to the best of your ability. We will address this further via various assessments you can administer along with client feedback as to how they’re feeling on any given day.