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Patient Guide for Parkinson's Disease

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Introduction

Welcome to PhysioPartners patient guide for Parkinson’s Disease Rehabilitation.

This guide will help you understand:

Anatomy

What is Parkinson’s Disease?

Parkinson’s Disease—also known as Parkinson’s or PD—is a progressive neurodegenerative disorder that affects the nervous system. This condition develops when nerve cells (neurons) in a structure called the substantia nigra become impaired or die. The substantia nigra belongs to a group of midbrain structures called the basal ganglia. Under healthy states, nerve cells in this region produce a neurotransmitter (chemical messenger) called dopamine. This neurotransmitter helps regulate mood, memory, motivation, and coordination.

When substantia nigra nerve cells become impaired or begin to die, they gradually stop producing dopamine, which leads to physical symptoms such as uncontrollable shaking, balance and coordination issues, and stiffness. Mental and behavioral changes, memory problems, sleep disturbances, fatigue, and depression may also develop. Symptoms typically begin to appear gradually and slowly worsen over time. The reason why nerve cells stop producing is unknown, but certain risk factors a system in the midbrain (substanstia nigra) which produces the chemical called dopamine, stops producing this chemical. It is still unknown why the cells stop producing dopamine. The chemical dopamine is required in the body for many things including coordination, mood, memory and motivation. It is interesting to note that usually by the time someone is diagnosed with Parkinson’s disease, around half of the dopamine-producing cells have already died.

History of Parkinson's Disease

James Parkinson, a British apothecary, was credited with providing the first publication about this disease in 1817. He reported a summary of six cases of what he called ‘shaking palsy’ or ‘paralysis agitans’. All six patients presented with similar symptoms such as tremors, stooped posturing, abnormal gait, paralysis, and diminished muscle strength.

Additional researchers, including Jean-Martin Charcot, continued to study the disease, which led to the expansion of the early description. Charcot’s contribution also distinguished Parkinson’s disease from multiple sclerosis. By the end of the 20th century, a great advancement in the discovery of a genetic component that occurs in some people with the disease was made.

In particular, the early onset of Parkinson’s is often inherited, and certain forms of this disease are linked to specific gene mutations. For one Italian family—in which five generations were studied—it was discovered that over 60 family members were diagnosed with Parkinson’s disease. To better understand the factors that lead to Parkinson’s, an abundance of research is ongoing throughout the 21st century.

Signs and Symptoms

There is no single symptom that determines that one has PD. Nor is there one single test that is used to delineate that you have the disease. Everyone who is diagnosed has a unique disease but there are a constellation of signs and symptoms that can develop which cumulatively point to the suspicion of PD. The most common signs and symptoms are:

  • Muscle tremors
  • Postural instability and impaired balance (difficulty remaining upright especially when standing still or rising from a chair)
  • Difficulty with walking, often taking shuffling (festinating) steps,
  • Slowness of movements (bradykinesia)
  • Inability to get movements going (akinesia)
  • Sustained or repeated muscle cramp (dystonia)
  • Stiffness of muscle movement (rigidity)
  • Stooped posture (due to being postural unstable so then subconsciously lowering one’s center of gravity to compensate)
  • Increased postural sway (body motion when standing still)
  • Loss of smell
  • Sleep disturbances; can include sudden movements during sleep
  • Constipation
  • Loss of automatic movements such as blinking, or swinging arms when walking
  • Decline in automatic facial expressions (facial masking)
  • Drooling
  • Regular dizziness
  • Problems projecting one’s voice (only able to speak softly)
  • Handwriting changes (may become too difficult to coordinate) and/or can become very small (micrographia)
  • Fatigue
  • Depression
  • Loss of motivation
  • Psychosis episodes (seeing, hearing, smelling items that are not there)

According to the Parkinson's Foundation, idiopathic Parkinson’s is the most common form of Parkinsonism. However, about 15 percent of those with symptoms suggesting PD have additional comorbidities and have been termed atypical parkinsonism disorders. These conditions are typically more difficult to treat than PD and include: 

Multiple System Atrophy (MSA) 

MSA is a term encompassing several neurodegenerative disorders in which one or more systems in the body deteriorates. Similar syndromes include: Shy-Drager syndrome, striatonigral degeneration and olivopontocerebellar atrophy.  Average age of onset is in the mid-50’s. In 2007, a new classification was proposed with two major subtypes: 

  • MSA-P (similar to SND) in which parkinsonism dominates. 
  • MSA-C  in which cerebellar ataxia, (incoordination), dominates. 

MSA symptoms include: incoordination (ataxia), dysfunction in the autonomic nervous system that automatically controls things such as blood pressure and bladder function. These are in addition to variable degrees of parkinsonism including symptoms such as slowness, stiffness and imbalance. 

Initially, it may be difficult to distinguish MSA from Parkinson’s. More rapid progression, poor response to common PD medications and development of other symptoms in addition to parkinsonism may be clues. The diagnosis of MSA is made based on clinical features. There is no specific test that provides a definitive diagnosis. There is no specific treatment for MSA. Treatment focuses on alleviating symptoms. People with MSA usually respond poorly to PD medications and may require higher doses than the typical person with PD, often with only modest benefit. 

Progressive Supranuclear Palsy (PSP) 

PSP is the most common degenerative type of atypical parkinsonism. Average age of onset is in the mid-60’s. Symptoms tend to progress more rapidly than PD. People with PSP may fall frequently early in the course of disease. Later symptoms include limitations in eye movements, particularly looking up and down, which also contributes to falls.  Those with PSP also often have problems with swallowing (dysphagia), difficulty in producing speech (dysarthria), sleep problems, memory and thinking problems (dementia).  The diagnosis of PSP is made based on clinical features. There is no specific test that provides a definitive diagnosis. There is no specific treatment for PSP. Treatment focuses on alleviating symptoms. 

Corticobasal Syndrome (CBS) 

CBS is the least common of the atypical causes of Parkinsonism. Usually begins with symptoms affecting one limb. In addition to parkinsonism, other symptoms can include abnormal posturing of the affected limb (dystonia), fast, jerky movements ( myoclonus), difficulty with some motor tasks despite normal muscle strength (apraxia), difficulty with language (aphasia) among others. Onset typically begins after age 60 and progresses more rapidly than PD. There is no specific test for CBS. Treatment focuses on symptoms. Supportive treatment such as botulinum toxin (Botox®) for dystonia, antidepressants, speech and physical therapy may be helpful. Levodopa and dopamine agonists (common PD medications) seldom help.

Dementia with Lewy bodies (DLB) 

Dementia with Lewy bodies (DLB) is a progressive, neurodegenerative disorder in which abnormal deposits of a protein called alpha-synuclein build up in multiple areas of the brain. Dementia with Lewy bodies is second to Alzheimer’s as the most common cause of degenerative dementia that first causes progressive problems with memory and fluctuations in thinking, as well as hallucinations. These symptoms are joined later in the course of the disease by parkinsonism with slowness, stiffness and other symptoms similar to PD. While the same abnormal protein (alpha synuclein) is found in the brains of those with PD, when individuals with PD develop memory and thinking problems it tends to occur later in the course of the disease. There are no specific treatments for DLB. Treatment focuses on symptoms. 

Drug-induced Parkinsonism 

This is the most common form of what is known as secondary parkinsonism. Side effects of some drugs, especially those affecting brain dopamine levels (anti-psychotic or anti-depressant medication), can cause parkinsonism. Although tremor and postural instability may be less severe, this condition may be difficult to distinguish from Parkinson’s. Medications that can cause the development of Parkinsonism include: 

  • Antipsychotics 
  • Certain antiemetics (anti-nausea medications) 
  • Some antidepressants 
  • Reserpine 
  • Tetrabenazine 
  • Some calcium channel blockers 

Symptoms usually gradually disappear after stopping these medications over weeks to months, though symptoms may last for up to a year. 

Vascular Parkinsonism (VP) 

There is some evidence to suggest that multiple small strokes in key areas of the brain may cause Parkinsonism. No specific clinical features or diagnostic tests reliably differentiate PD and vascular parkinsonism, though some features may suggest VP. A severe onset of parkinsonism immediately following (or progressively occurring within a year of) a stroke may indicate VP. 

Other signs that can indicate VP include: evidence of vascular disease on an MRI (magnetic resonance imaging) of the brain in combination with varying levels of deterioration, prominent early cognitive problems and lower body issues, such as early gait and balance problems. Dopaminergic medications (like levodopa) may possibly have modest benefit, depending on the location of vascular disease in the brain. 

 

Risk Factors

There are several factors that appear to play a role in the development of PD: There are several factors that appear to play a role in the development of PD:

  • Age: The biggest risk factor for developing Parkinson’s disease is advancing age. Most commonly people are diagnosed with PD around the age of 60 or older. However, the risk of getting Parkinson’s disease increases with age and is considerably higher by the time an individual reaches the age of 85. Although it is uncommon for people to be diagnosed with this disease before the age of 60, it does occur. This type of case is referred to as ‘young-onset Parkinson’s disease’.
  • Sex/Gender: Research has consistently demonstrated that men are more frequently diagnosed with Parkinson’s disease than women.
  • Heredity: Having one or two close relatives with Parkinson’s disease increases the chances of developing this condition. However, this risk remains low unless many members of the same family have Parkinson’s.
    About 10-25% of people diagnosed with this disease have a genetic link, while the majority of people with Parkinson’s disease did not inherit the condition.
    In addition, there are some genetic variations (mutations) that can increase the chance of developing Parkinson’s, but people who have these mutations do not always develop this disease. Ongoing research is focusing on genetics as a causative factor for the disease. .
  • Environmental Factors: Some environmental factors such as pollution, circulating viruses, heavy metals, pesticides, herbicides, illicit drugs, and exposure to additional toxins may play a role in the onset of Parkinson’s disease.
  • Head trauma: There is some evidence that suggests a history of traumatic brain injury (TBI) or repeated head trauma (e.g., boxers) may increase the risk of developing Parkinson’s disease. A serious brain injury can lead to the accumulation of a harmful protein called alpha-synuclein that causes nerve cell deterioration and death. Elevated levels of alpha-synuclein in nerve cells and cerebrospinal fluid (CSF) are associated with the onset of Parkinson’s for some individuals.
  • Ethnicity: Research regarding the ethnicity-related risk of acquiring Parkinson’s is ongoing, but most studies show that White populations generally have the highest prevalence of Parkinson’s disease. However, individuals of Hispanic or Black ethnicity who are diagnosed with this condition often have a higher risk of experiencing severe cognitive impairment

Diagnosis

How do healthcare providers diagnose Parkinson's Disease?

To date, there is no single test that can accurately identify the presence of Parkinson’s disease. Instead, the diagnostic procedure involves assessing medical history, presenting symptoms, neurological tests, and a physical examination that a healthcare professional conducts.

Although Parkinson’s disease is often diagnosed when the classic motor (movement) signs or symptoms are present such as tremors, muscle rigidity, balance issues, festinating gait, or difficulty moving, current research points to the identification of non-motor signs. More specifically, signs such as the loss of smell, dizziness, constipation, sleep disturbances, and depression often become evident ahead of the motor-related signs and can potentially be used for earlier diagnosis of the disease in the future.

If a healthcare professional suspects Parkinson’s disease, the next step is a referral to a doctor who specializes in neurological disorders, such as a neurologist.

Examinations

A combination of physical, neurological, and imaging examinations may be necessary to rule out the possibility of other neurological diseases that may cause symptoms similar to Parkinson’s disease. The physical exam includes a visual assessment, palpation (feeling limbs and muscles), percussion (tapping body parts to produce sound), and auscultation (using a stethoscope). During a neurological exam, an individual may be asked to walk, sit, stand, and move the limbs in specific ways to evaluate coordination and balance. Memory, sensory function, and reflexes may also be assessed.

In addition, imaging tests such as magnetic resonance imaging (MRI), positron emission tomography (PET) scan, or an ultrasound may be performed. A specialized single-photon emission computerized tomography (SPECT) scan called a dopamine transporter scan (DaTscan) is an alternative imaging exam, but it is expensive and not performed routinely.

The final diagnosis depends on the cumulation of results from the series of tests that are conducted.

Medication

There are many drugs that are being used to treat the PD physiological disease process as well as many drugs that are used to treat the symptoms that the disease brings with it. Unfortunately, no drug is currently available that reverses the effects of Parkinson’s or stops the disease from progressing.

Initial drug treatment typically aims to restore and mimic the effects of dopamine, or to stop the breakdown of dopamine in the brain. Some doctors often recommend a trial period of a dopamine-type medication such as levodopa to see if it is effective at decreasing symptoms (e.g., tremors, motor difficulties). Levodopa, which is an amino acid the body converts into dopamine, became the primary agent to treat the symptoms of Parkinson’s disease during the early 1900s.

Furthermore, a positive response to levodopa was an indication or confirmation of Parkinson’s disease, and due to its effectiveness it was once considered the gold standard for Parkinson’s management. In some cases, levodopa is still the first line of treatment due to its function as a dopamine replacement agent.

However, levodopa requires 2-3 weeks to initially take effect, and it has a short half-life of about 90 minutes, which means the body rapidly breaks it down. As the medication’s effects wear off, the symptoms may start up again until another dose of levodopa is taken. In addition, levodopa may cause dyskinesia (uncontrollable fidgeting) as the levels of dopamine start to increase in response to taking this drug, especially in individuals with young-onset Parkinson’s disease. This drug also loses its effectiveness over time.

To combat these types of issues, levodopa may also be combined with another medication called carbidopa to form Sinemet (carbidopa-levodopa), which helps the drug cross into the brain. The combination of these two drugs also offers extended-time release that improves its effectiveness.

As a result, Sinemet is now referred to as the gold standard in Parkinson’s treatment in comparison to other drugs that mimic dopamine in the brain (dopamine-agonists) or those that stop the breakdown of dopamine, such as monoamine oxidase B (MAO-B) inhibitors, catechol-O-methyl transferase (COMT) inhibitors, and anticholinergics.

A doctor will evaluate the most up-to-date and effective medications for each individual case. The medication that is recommended also depends on the presenting symptoms, an individual’s age, overall physical health, lifestyle, and whether the symptoms affect activities of daily living such as maintaining balance, walking, and using the hands properly.

Unfortunately, some of the medications that are used to treat Parkinson’s disease can cause or worsen certain symptoms (e.g., dyskinesia) as the dosage is increased. It is important to note that dyskinesia is not a symptom of Parkinson’s, but rather a side effect that is caused by some medications. Many patients choose to continue taking medication despite the occurrence of dyskinesia because without the medication their other symptoms worsen, making it difficult to manage their daily lives.

Rehabilitation

Engaging in rehabilitation is a very important part of living with PD. As stated previously, the goal is not to reverse the effects of PD, but rather to slow down the degenerating effects of any symptoms you may have and maximize your ability and function despite symptoms. Your Physical Therapist & Occupational Therapist will aim to keep you as independent as possible for as long as possible. You may also have other specific lifestyle goals that your Physical Therapist & Occupational Therapist can help you with.

Regular exercise is important for anyone but it has been shown to be particularly effective in people living with PD as it can affect how efficiently dopamine is used in the brain.

Every PD journey is different so your Physical Therapist & Occupational Therapist will focus on developing an exercise program for you that minimizes the effects of your specific symptoms. Exercise for PD will include a combination of exercises for strength, balance, endurance, flexibility and coordination. Several methods of exercise may be used by your Physical Therapist & Occupational Therapist to develop and individualize a program for you:

Cardiovascular (aerobic) exercise: Several studies have shown the benefits of high intensity exercise slows the general aging of the brain in anyone (high intensity exercise is defined as exercise that raises your heart rate and makes you breathe heavier).  In patients with PD, high-intensity aerobic exercise has also been shown to slow down motor skill degeneration, protect against depression, and improve quality of life. 

Your Physical Therapist & Occupational Therapist can advise you on what type of high intensity exercise might be best for you, how much, and how often.  The general thought overall is that the more cardiovascular exercise you can do, the better!  That being said, even small amounts count!  As a guide and to have something to aim for, one study showed that 2.5 hours of physical activity per week slowed the decline in quality of life in people living with PD. It is wise to choose something that you enjoy doing as it has also been shown that consistency is the key; more benefits have been shown with exercise programs after 6 months versus those that just last weeks or a few months.  

Strength training: Using weights can be very beneficial to improve strength, particularly lower body strength, which has a direct effect on one’s ability to balance. In addition, both upper and lower body strength training has been shown to help decrease slowness of movement (bradykinesia) that may be a symptom for some, and can improve the ability to more easily do regular daily activities.

Balance, posture and fall prevention:  As noted earlier, the lack of dopamine affects the ability to initiate or continue movements. Sometimes it is difficult to start a movement (akinesia), or movements are slow (bradykinesia).  Often movements that are normally automatic are also affected such as blinking, swallowing, walking while talking, or arm swinging with walking. Patients with PD may have to be reminded to continue these types of movements.

A change in the ability to initiate movements or having slower or less automatic movements can directly affect one’s posture and balance.  This can in turn increase one’s chance of falling. It has been well proven that balance can improve with training! For this reason your Physical Therapist & Occupational Therapist will work on posture and balance exercises with you. They will also discuss strategies to make your home and your regular activities less risky for falls.

Movement strategy training: Different types of movement training can assist with maintaining regular motion and regulating automatic movements. Your Physical Therapist & Occupational Therapist may work on reciprocal training, which aims to reintegrate the normal reciprocal movements such as arm swinging and trunk rotation with walking. It has also been shown that training with oversized movements, such as exaggerated arm or leg swings, or using extra-large steps when practicing can then help maintain the smaller, similar movements that are normal with everyday activities. Your Physical Therapist & Occupational Therapist may also actively train by practicing two tasks at once (dual-task training) such as walking and carrying a cup of water, walking and talking, or walking while doing mental tasks. Using mental imagery to imagine the perfect movements may also be used to assist your rehabilitation.

Other exercises and group exercise: Other specific activities such as dancing, non-contact boxing, tai chi, qi-gong, biking, and yoga have all been shown to have positive effects on the symptoms of PD, so your Physical Therapist & Occupational Therapist may incorporate these activities into your exercise routine.  In addition your Physical Therapist & Occupational Therapist may encourage you to partake in a group exercise or support group. It is well proven that group activities can positively benefit one’s overall well-being; this is true also for PD. 

PhysioPartners offers care with LSVT BIG and PWR! certified therapists.

Other Interdisciplinary Team Therapy

Your Physical Therapist & Occupational Therapist may suggest that you also work with other health care professionals in order to best address your rehabilitation needs.  They may suggest you see an occupational therapist (OT) who can more finely address your activities of daily living such as getting dressed, bathing or showering, writing, cooking and any other activities of daily living that you may be having difficulty with. They can also assist greatly with advising any home modifications to reduce falls risks, or provide support to foster independence. 

Your Physical Therapist & Occupational Therapist may also encourage you to see a speech language pathologist (SPL) if you have symptoms of poor voice projection, speech difficulties, swallowing concerns, diminishing facial expressions and/or communication problems.

Current Research

Our understanding of PD is increasing daily. Continual extensive and ongoing research seeks to learn more about PD in order to better definitively diagnose the disease, diagnose the disease as early as possible, and to provide more effective treatment. Some of the current research is focusing on:

Biological markers: Finding biological markers in the body that could identify individuals at risk for developing PD early on. Currently, by the time individuals have developed symptoms of PD leading to the diagnosis, it is thought that there has already been a 40-50% decline in the amount of dopamine in the brain; some reports are even higher.

Alpha-Synuclein: Studying mutations in alpha-synuclein and other proteins present in the brain that are involved in the transmitting of signals in the brain. In people with PD we currently understand that alpha-synuclein proteins mutate and build up into clumps called Lewy Bodies. Research is ongoing on how to prevent this mutation and clumping, as well as potential ways to vaccinate against this mutation.

Cellular processes: Other studies are looking into the cellular processes of mitochondria (the power-producers in our cells) which seem to be affected with PD, the role of inflammation in the disease, the role of gut bacteria in alpha-synuclein build up, and the role oxygen plays in the breakdown of dopamine.

Genetics: Genetic research is ongoing to determine any genetic precursors or mutations that may contribute to developing the disease.  Pharmacology: Pharmacological research is continually ongoing to determine the best drugs to combat the degenerative physiological process of PD as well as the presenting symptoms. Some drugs that have been approved for use in other diseases are being tested for use with PD, and other brand new drugs are being developed in response to new research results.  In addition, new surgically implanted drug pumps are being trialled to more effectively deliver PD medications in order to avoid the common on/off periods of traditional medication prescriptions.

Environment and Toxins: Research continues to track and help determine if there are environmental risk factors to developing the disease such as pollution, exposure to toxins, or circulating viruses.  Of note, researchers have been looking into several ‘clusters’ of patients that have been noted worldwide where these patients have all been in the same environment and then have subsequently developed PD. Interestingly, often these clusters develop the young-onset type of PD.

Motor Patterns: PD seriously affects one’s normal movement (motor) patterns.  Patients may experience the inability to move when they desire (akinesia), slowness of movement (bradykinesia) or with medication they may develop abhorrent movements (dyskinesias). 

Current research is focusing on why these movements occur and how best to treat all types of movement patterns in order to minimize the negative effect on patients’ everyday lives.

Deep Brain Stimulation: Deep brain stimulation can be used in advanced PD and is generally used when medications have failed to help. With deep brain stimulation electrodes are surgically implanted into the brain and stimulated in order to help treat the effects of PD. Research is ongoing on which areas to treat as well as how much and how often.

Exercise: Exercise has already been well proven to help modify PD symptoms and stop them from rapidly getting worse.  Ongoing research into exercise is helping to determine which types of exercise are most beneficial and to better define time/effort benefits.

It should be of note that several cellular processes that are involved in the development of PD are related to the development of other neurodegenerative diseases, such as Alzheimer’s Disease, Lewy Body Dementia (which along with the dementia presents with parkinsonian-type body symptoms) as well as Amyotrophic Lateral Sclerosis (ALS).  Research is ongoing with focus on the similarities between these types of diseases.

Helpful Links for Information on PD and Atypical Parkinsonism Disorders 

PhysioPartners provides services for Physical Therapy & Occupational Therapy in Chicago.

Conclusion

Physical Therapy & Occupational Therapy services at PhysioPartners can help you manage your Parkinson’s  Disease.

Our highly skilled Physical Therapist & Occupational Therapists can help maximize your functional potential and delay any physical declines as long as possible. Starting Physical Therapy & Occupational Therapy during the early stages of Parkinson’s helps to improve outcomes, so it is important not to delay a consultation.

Portions of this document copyright MMG, LLC.

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