Health Information

Parkinson's is a neurodegenerative disorder, especially but not exclusively affecting dopamine cells. Symptoms affect multiple body systems including movement, cognition, emotion, sleep, and the autonomic system (blood pressure, bladder, and bowel).

Neurological disorders are the leading cause of disability in the world. Parkinson's is the fastest growing neurological disorder affecting 2-3% of the population over 65.

Newly Diagnosed

Getting a diagnosis of Parkinson's can be devastating. Give yourself time to adjust and let it sink in. We are here for you with information and resources to help. Over time, you will become a Parkinson's expert, take charge and manage your health.

The resources here are a starting point. Not every resource will be applicable to you. Some resources will be relevant now, later on, or not at all. Your doctor can help identify topic areas that will help you as you navigate your Parkinson's journey.

All resources are in PDF  format unless otherwise indicated.

• Welcome to our clinic
• What is Parkinson's Disease?
• Parkinson's Resource List
• Parkinson's Disease FAQ – Parkinson's Foundation
• Depression and Parkinson's – Parkinson's Foundation
• Exercises for People with Parkinson's – Parkinson Canada
• Nutrition and PD – Parkinson's Foundation
• Improving Communication – Parkinson's Foundation
• Sleep Problems – Parkinson's Foundation
• Constipation and other Gastrointestinal Problems – Parkinson's Foundation
• Skin Changes
• Caring for You – Parkinson's Foundation

Motor Symptoms

Motor symptoms can happen anytime in the course of the disease and usually respond well to medication. Motor symptoms differ from person to person. Not everyone with Parkinson's will experience all of these motor symptoms, but everyone with Parkinson's will experience slowness (bradykinesia).

Motor or "movement" symptoms can include:

• Stiffness (rigidity): muscle stiffness
• Slowness (bradykinesia): slowing down of spontaneous movement. For example, slower walking or less arm swing while walking.
• Tremor: a rhythmic, involuntary shaking that occurs in a finger, arm or leg. For some people tremor occurs when they're relaxed and at rest, for others it gets worse when they're doing something like drinking from a cup or eating with a spoon. Tremor is a common symptom, but not everyone with Parkinson's has tremor.

Other motor symptoms include:

• Postural instability: balance and coordination problems that can lead to problems walking.
• Freezing of gait: difficulty initiating walking or turning, especially in crowded spaces. Feeling like your feet are glued to the floor.
• Dyskinesia: involuntary movements of the face, trunk or limbs.
• Masked-face: less facial expression.
• Micrographia: smaller and cramped-together handwriting.
• Speech problems: softer or monotone speech, sometimes mumbling or slurring words.
• Swallowing problems: coughing, choking, or clearing the throat while eating or drinking.

Non-motor Symptoms

Non-motor (non-movement) symptoms are sometimes called the "invisible" symptoms of Parkinson's. They are common and are different for each person. You may experience some and not others. Non-motor symptoms can occur any time in the course of the disease, even before motor symptoms or before a diagnosis.

Non-motor symptoms can impact the quality of life for Parkinson's and for their families and loved ones. Talk to your doctor, they are here to help.

Parkinson's disease can impact how you think and feel:

• Apathy is a lack of motivation and interest in activities that you would normally find joy in.
  • Apathy and Parkinson's Disease | Parkinson's Foundation
• Depression is feeling extreme sadness or a sense of emotional emptiness for a long time. It's more than temporary feelings of sadness, unhappiness or frustration. These feelings may affect your ability to carry out day-to-day activities.
  Depression is one of the most common, and most disabling, non-motor symptoms of Parkinson's disease. As many as 50% of people with Parkinson's experience the symptoms of clinical depression at some stage of the disease. Some people experience depression up to a decade or more before experiencing any motor symptoms of Parkinson's.
  • Depression and Parkinson's – a Non-drug Treatment Option | Parkinson's Foundation
• Anxiety is often described as a sense of dread, constant worry, or difficulty concentrating. Physical symptoms can include sweating, pounding or racing heart, feeling breathless, dizzy, restless, or nauseous. There are many types of anxiety. Anxiety can be managed. Getting enough rest, eating well, exercising, massage therapy, meditation and mindfulness can help.
  • Anxiety and Parkinson's | Parkinson's Foundation
• Memory or thinking (cognitive) problems: difficulty multitasking and concentrating.
  • Cognition | Parkinson's Foundation
• Psychosis: hallucinations (seeing things that aren't there) and delusions (paranoid beliefs).
  • Psychosis | Parkinson's Foundation

Parkinson's can also cause other difficulties:

• Gastrointestinal: digestive issues and constipation is common.
• Excessive daytime sleepiness or fatigue: feeling sluggish or exhausted.
• Light-headedness or dizziness: feeling faint when sitting up or standing due to the body not being able to regulate blood pressure quickly.
• Pain: sometimes there can be unexplained discomfort or pain in one part or the whole body.
• Skin changes: oily or dry skin. Parkinson's patients have an increased risk of melanoma and should have annual skin examinations with a dermatologist. Report any unusual skin conditions to your doctor.
• Sleep issues: insomnia (difficulty falling or staying asleep), restless legs syndrome (an uncomfortable sensation in the legs) or REM sleep behaviour disorder (physically acting out dreams).
• Smell loss: often an early sign of Parkinson's.
• Vision changes: some patients experience double vision or dry eyes because of slower blinking.
• Drooling: decreased swallowing can cause a buildup of saliva.
• Sweating: excessive sweating can occur.
• Sexual changes: reduced libido and dysfunction (not age-related) can occur, while some medications can increase sexual behaviours to bothersome levels. Talk to your doctor about any concerns.

Medication

Medication is used to improve your quality of life living with Parkinson's. It's important to take your medications at the prescribed dose and time. Your doctor will work closely with you to develop the best regimen for you.

• Parkinson's Medications: What you need to know – this information sheet by Parkinson Canada will help you understand the types of Parkinson's medications and side effects.
• Medications to Treat Parkinson's – this is a more in-depth look at Parkinson's medications by Parkinson Canada, geared mostly toward health care professionals. On page 32 there is a useful tool to track your response to medications.
• Botulinum Toxin injections      are sometimes used to help with abnormal movements and other symptoms of Parkinson's disease such as dystonia or drooling.

Advanced Therapies

Deep Brain Stimulation (DBS)

• Deep Brain Stimulation (DBS) Clinic at UHN
  DBS is a common treatment. If you are interested in speaking with someone who has had DBS let your doctor know.
• Deep Brain Stimulation | UHN
• TED Talk by Dr. Andres Lozano, Head of Neurosurgery at the University of Toronto
• Stimulating Conversation on DBS
  Video discussions with patient perspectives and Q&A with the clinical team.

Duodopa®

• DUODOPA® (Levodopa/Carbidopa Intestinal Gel) Therapy

Focused Ultrasound

• Video: Focused ultrasound opens blood brain barrier in Parkinson's | Krembil Research Institute

Physiotherapy

Physiotherapy is part of the multi-disciplinary approach to Parkinson's care. In early Parkinson's, physiotherapy provides education in physical activity and self management strategies. In the mid and later stages it can help minimize deterioration, improve gait, balance, daily activities, and reduce the risk of falls.

• Video: The role of physiotherapy in Parkinson's | Parkinson Canada
• Find a Physiotherapist

Occupational Therapy

An Occupational Therapist can help you identify challenges, set realistic goals, and strategize solutions to help you continue doing the things you enjoy that are important to you. Strategies may be adapting your environment, adjusting the activity, and perhaps changing your mindset from "I think I can" to "I will".

• Find an Occupational Therapist

Nutrition

A balanced and healthy diet is the foundation of good health. There are some dietary adjustments that can help your medications work more effectively or help with side effects.

• Nutrition and PD – fact sheet by the Parkinson's Foundation with information about healthy foods and Parkinson's.
• Find a dietitian

Speech, language and swallowing

Changes or difficulty chewing and eating, speaking or swallowing are common in Parkinson's. These changes can happen at any time, but usually increase as PD progresses. Sometimes these problems are not obvious and difficult to describe.

• Learn how Parkinson's affects communication, strategies and techniques that can help: Speech and Swallowing | Parkinson's Foundation.
• Resources for speech and swallowing
• Find a Speech-Language Pathologist

Mental Health

When it comes to mental health there is a large amount of variation between people with Parkinson's. Some people experience no mental health issues, and for some, their main difficulties are mental health related i.e., depression, anxiety, cognitive issues, or psychosis.

Sleep issues, fatigue and apathy can contribute to mental health difficulties, and sometimes Parkinson's mediations can contribute to impulsivity and psychosis.

Talk to your doctor if you have any concerns or questions about mental health.

• Learn about mental health and Parkinson's in this webinar by the Parkinson's Foundation
• Take a look at our Mental Health resources

Other

Driving

• Parkinson's Disease and Driving | Parkinson Canada

Falls Prevention

• Preventing Falls When You Come for an Appointment | UHN
• Preventing Falls | Parkinson Canada booklet

Communicating

• Improving Communication | Parkinson's Foundation

Dental Care

• Dental Health in Parkinson's | Parkinson's Foundation

Skin Care

• Skin changes | UHN

Ataxia is a symptom of incoordination usually due to diseases affecting the part of the brain known as the cerebellum.

All resources are in PDF  format unless otherwise indicated.

• What is Ataxia?
• Ataxia Clinic at Toronto Western Hospital information
• Ataxia Therapies and Resource package

Symptoms of Ataxia can include:

• Decreased coordination
• Difficulties walking, poor balance and falls
• Heart problems
• Decreased fine motor skills
• Gradual loss of muscle strength
• Muscle stiffness
• Muscle tremors
• Difficulty with speech
• Trouble swallowing
• Vision problems

• Treatment for Ataxia is multi-disciplinary and may include a Neurologist, Physiotherapist, Speech-Language Pathologist and Mental Health specialist, among others.
• Living with a long-term condition such as Ataxia can be stressful and can cause intense feelings of anxiety. In some cases, this can trigger the onset of depression.
  • Talk to you doctor if you are feeling down or hopeless or are no longer taking pleasure in the things you enjoy.
  • Depression can be treated with cognitive behavioural therapy or antidepressants.
• Medications can help manage the symptoms that occur with Ataxia.
  • Medications for nerve pain, muscle relaxants for stiffness or cramps may be prescribed.

Physical therapy

• Physical therapy can help you maintain muscle strength and flexibility. It can also help with balance and mobility. A Physiotherapist will teach you a number of physical exercises you can do every day to help strengthen and stretch your muscles.
• A Physiotherapist may be able to help you increase your stamina levels to help you cope with fatigue.
• Find a Physiotherapist

Speech therapy

• Speech therapy can help with vocal projection and clarity.
• A Speech therapist or Speech-Language Pathologist may suggest:
  • changing your posture to improve the quality of your voice
  • exercises to strengthen the muscles used when speaking
  • speaking slower to emphasize each word
  • breathing techniques to improve your speech
  • exercises to stimulate your swallowing reflex and strengthen the muscles used when swallowing
• Find a Speech-Language Pathologist
• You may also be referred to a Dietitian for dietary advice.
  • For example, your diet may need to include food that's easier to swallow.
  • Find a Dietitian

Occupational therapy

• Occupational therapy teaches you strategies and modifications that can make the day-to-day activities easier and help you continue to do the activities you like to do.
• An Occupational Therapist can also advise you about modifications you can make to your home to make your life easier, such as installing guide rails, grab bars, or a stair lift.
• Find a Occupational Therapist

Assistive devices

• Walking poles and walkers can help with balance and mobility.
• Wheelchairs are sometimes necessary and can be helpful for long distances such as in airports or going to appointments.
• Communication aids can help with speech difficulties.

Lewy Body Dementia (LBD) is a common Atypical Parkinsonism. LBD is associated with abnormal deposits of the alpha-synuclein protein (Lewy bodies) in the brain resulting in one of the most common forms of dementia and problems with thinking, hallucinations (typically visual), movement, behaviour and mood. Sometimes it is called "Dementia with Lewy bodies". Lewy bodies are also seen in patients with Parkinson's disease, that is why some features are shared between the two diseases.

All resources are in PDF  format unless otherwise indicated.

• What is Lewy Body Dementia?

In LBD the Lewy bodies spread throughout the brain and the symptoms can be broad, affecting many functions of person affected.

The main symptoms are decision-making and problem-solving difficulties associated with memory decline.

Some of the common features include experiencing a shorter attention span, and issues with the sense of direction, which can result in getting lost easily.

Patients with LBD may have issues with movements similar to Parkinson's disease, like hand tremor, slowness of movement, and stiffness. LBD can affect the functions of the upper limbs and may cause trouble walking.

One of the frequent features associated with LBD are hallucinations, typically visual hallucinations. The affected individual usually reports seeing things that are not there, like seeing colours, shapes, people or animals, or seeing things in different forms.

Acting out dreams during sleep, which is called Rem Sleep Behaviour Disorder (RBD) is a prevalent feature of LBD.

Usually, to make the diagnosis of LBD you may need more than one visit to the specialist's office, going through a detailed medical history, physical examination, and may require a brain MRI and a sleep study.

Currently there are no treatments for LBD.

Manaagement of LBD is best with a multidisciplinary team, where the family doctor, Neurologist, Psychiatrist/Psychologist, Physiotherapist, and Social Worker all work together for the best patient care.

For some patients, the doctor may start Parkinson's disease medications, which can help with movement difficulty, but unfortunately, the response is usually limited.

For the cognitive part, a detailed neuropsychiatric evaluation should be taken, as some of the behavioural issues can be solved without the need for medication. Assessment for the need for dementia medication is often considered.

Physical therapy can help you maintain muscle strength and flexibility. It can also help with balance and mobility. A Physiotherapist may be able to help you increase your stamina levels to help you cope with fatigue.

Occupational therapy teaches you strategies and modifications that can make day-to-day activities easier and help you continue to do the activities you like to do.

Speech therapy can help with vocal projection and clarity. A Speech-Language Pathologist may suggest: changing your posture to improve the quality of your voice, exercises to strengthen the muscles used when speaking, speaking slower to emphasize each word, breathing techniques to improve your speech, and exercises to stimulate your swallowing reflex and strengthen the muscles used when swallowing.

Corticobasal Syndrome (CBS) is a progressive neurodegenerative disorder included under the broad "umbrella" term of Atypical Parkinsonism. It usually starts in mid adulthood (40s – early 60s) with stiffness, difficulty performing dexterity tasks with one extremity, involuntary movements, or even affect mobility with poor balance and falls. Initially, a combination of these symptoms affects mostly one side of the body with relentless progression to the other side. The complaints of a patient with CBS can be similar to those of Parkinson's including slowness of movements, stiffness and tremor, however, additional symptoms not usually seen in Parkinson's appear in patients with CBS within 5 years of onset.

CBS is a rare disease, meaning that each year 5 people per 100,000 are living with the disease and an average of 1 person per 100,000 are newly diagnosed with CBS. Since CBS can start in varied forms and show a diverse combination of symptoms, it is a challenge to diagnose it during the first 2-3 years.

All resources are in PDF  format unless otherwise indicated.

• What is Corticobasal Syndrome?

Movement

• Slowness, stiffness
  The difficulty in controlling hand movements can be a first manifestation of CBS. These can be due to increased muscle stiffness in the form of rigidity, and be aggravated by slow coordination of the limb. These can cause problems performing simple tasks like buttoning a shirt, using cutlery or manipulating any kind of tools. The difficulty starts mostly on one side and the patient may adopt strategies to compensate such as using the non-dominant hand to complete these activities. In CBS these symptoms progress and may affect the opposite hand, or less commonly, a leg. They can be worsened if any of the problems discussed below are present.
• Tremor and Myoclonus
  Shakiness of a limb typically arises when trying to complete a voluntary action (kinetic tremor), whereas an irregular tremor such as reaching out with the arm can also present (postural tremor). The presence of brief, shock-like jerks with a wider amplitude than tremor is possible and frequent in CBS and is called myoclonus. Additional jerky myoclonus can be seen in the individual fingers of the hand and any of these involuntary movements will contribute to the incapacity to complete activities that require use of the affected limb.
• Dystonia
  An increase in muscle contraction that causes awkward or abnormal postures or movements of the affected limb can also present in CBS. Dystonia can be accompanied with continuous and slow spreading of muscle contractions to other parts of the affected limb. The persistent muscle contraction can cause muscle soreness and its combination with rigidity can lead to fibrotic changes of the joint's tissues and painful contractures.
  Read more about Dystonia.
• Alien limb
  The inability to control movement of an extremity occasionally causes bizarre slow movements which can get as complex as if the limb has a "mind of its own". These movements commonly occur when focussed on other tasks. An arm may levitate, or interfere with the activities that the other hand is doing.

Apraxia

The inability to perform complex manual tasks or gestures, is first noticed when movements start to become clumsy. The actions affected are typically those that were learnt by practise throughout life. Common examples are loss of the ability to use eating utensils, do up buttons, or tie shoelaces. When apraxia is present in a leg, walking can become "frozen" for several seconds at a time and lead to balance problems and instability.

Sensory abnormalities

Contributing to the movement problems of CBS are sensory problems. It's not a simple loss of sense of touch, but an inability to interpret spatial complexity involving touch. This can take the form of an inability to recognize common objects by feel alone, or the inability to know the position of a finger or a limb in space.

Balance

Several of the above mentioned symptoms can contribute to an unsteady walk. The presence of uncoordinated leg movements can be aggravated by a decrease in the postural reflexes that help us maintain an up-right posture, and ultimately increase the risk of falls. The progression of these issues may lead to an inability to walk unassisted, requiring a walking aid.

Speech

In CBS, speech can be affected. Slurring (dysarthria) or stuttering is common. Additional difficulties can occur such as understanding or expressing language (aphasia), and difficulty saying what you want to say despite knowing the right words (apraxia of speech).

• Tremor in CBS can be treated with medications such as Propranolol which is typically used to treat other more common types of tremor. If the tremor is significantly interfering with your activities, you can ask your doctor about medications and whether they might help you.
• Myoclonus can be treated with medication when it interferes with activities or becomes troublesome. The range of drugs used is wide, and most of them are considered anti-epileptics. You can ask your doctor about these treatments and whether they might help you.
• For dystonia either of the neck, limbs or the face, treatment with botulinum toxin injections can be used. This medication acts as a temporary relaxant of the muscle producing a decrease of the symptoms of dystonia. The effects last about 8-12 weeks, and can be repeated every few months to maintain the benefit.
• For significant drooling, several measures can be taken. Chewing gum can stimulate swallowing and reduce the amount of drooling. Medications applied to the inside of the mouth can decrease the activation of your salivary glands.
• Unfortunately, there are no drugs that efficiently reduce or prevent the symptoms of alien limb, apraxia, and sensory abnormalities of CBS.

Physical therapy

• Physical therapy can help you maintain muscle strength and flexibility. It can also help with balance and mobility. A Physiotherapist will teach you a number of physical exercises you can do every day to help strengthen and stretch your muscles.
• A Physiotherapist may be able to help you increase your stamina levels to help you cope with fatigue.
• Regular passive stretching can help decrease the occurrence of muscle spasms and cramps, joint deformities.
• Find a Physiotherapist

Speech therapy

• Speech therapy can help with vocal projection and clarity.
• A Speech therapist or Speech-Language Pathologist may suggest:
  • changing your posture to improve the quality of your voice
  • exercises to strengthen the muscles used when speaking
  • speaking slower to emphasize each word
  • breathing techniques to improve your speech
  • exercises to stimulate your swallowing reflex and strengthen the muscles used when swallowing
• Find a Speech-Language Pathologist
• You may also be referred to a Dietitian for dietary advice.
• For example, your diet may need to include food that's easier to swallow.
• Find a Dietitian

Occupational therapy

• Occupational therapy teaches you strategies and modifications that can make the day-to-day activities easier and help you continue to do the activities you like to do.
• Walking aids are of remarkable importance in patients with CBS. Given the tendency to fall backwards, a walker should be weighted in front (i.e., with sandbags over the lower rung) to prevent falls.
• Installation of handrails at home, especially in the bathroom, help as well as removing throw rugs or low coffee tables from the patient's living space.
• Sometimes a heavy walker resembling a small shopping cart with three or four fat, soft rubber wheels and a hand brake can help prevent backwards fall. Shoes with smooth soles can make it easier to slide the first foot forward if freezing of gait is a present symptom.
• An Occupational Therapist can also advise you about modifications you can make to your home to make your life easier, such as installing guide rails, grab bars, or a stair lift.
• Access an Occupational Therapist

PSP is a progressive neurodegenerative disorder that has no known cause or cure. It affects brain cells that control balance, walking, coordination, eye movements, speech, swallowing, and thinking. These symptoms begin, on average, when an individual is in their early 60's but may start as early as in their 40's, and is slightly more common in men than women.

Initially, someone with PSP can have similar complaints than someone with Parkinson's such as slowed movements, stiff posture, and in some cases, even tremor. However, additional symptoms which are not usually seen in Parkinson's appear less than 5 years later and include repeated falls, trouble with eye movement, swallowing and speech difficulties, and changes in behaviour and thinking.

The fact that PSP can start in varied forms and show a diverse combination of symptoms makes it very hard to diagnose during the first 2-3 years. PSP is a rare disease, meaning that each year five or six people per 100,000 are living with the disease and an average of 1.1 people per 100,000 are newly diagnosed with PSP.

Want additional information? Keep reading or follow these links:

• What is Progressive Supranuclear Palsy (PSP)?
• Rossy Progressive Supranuclear Palsy Centre information

All resources are in PDF  format unless otherwise indicated.

Balance and walking

Loss of balance is usually the first symptom. It can be experienced as dizziness and during doctor visits be mistaken for inner ear problems. However, the balance difficulties of PSP progress, affecting the ability to maintain an up-right position during a turn or standing up/sitting down from a chair. It often causes backward or unexplained falls and eventually requires the use of a walking aid at some point in the disease. Prevention of falls is a critical measure in the management and an ultimate goal to maintain the quality of life of patients with PSP.

Eye movement

A region in the base of the brain, called the midbrain, contains cells that control eye movements. PSP affects the midbrain cells, causing a weakness of the supranuclear gaze (difficulty looking in a particular direction). Especially in PSP, there is a difficulty in the ability to move the eyes up or down. This can interfere with eating or with descending a flight of stairs, symptoms easily detected by a specialist doctor interview but that typically appear after a few years of initial symptoms. However, even months to years before a specialist is seen, family members and friends may notice subtle changes like the inability to maintain eye contact during conversation or a complaint of tunnel vision while driving a car.

Speech

The complex and coordinated movements that allow speech production are under the control of brain cells located in the vicinity of those that control eye movements. As these brain cells suffer from PSP, the movements of the mouth, tongue and throat also weaken resulting in different speech sounds. In most PSP patients after an average of three or four years, speech becomes slurred and slow. Additional features are an irregular, explosive or rubber-band quality (called spastic speech), a drunken quality (ataxic speech) or a soft speech similar as that of Parkinson's disease patients. A combination of at least two of these three features is often seen in the speech of patients with PSP.

Cognition and behaviour

PSP can have diverse cognitive symptoms. These are called executive dysfunction. Symptoms include difficulty synthesizing several different ideas into a new idea or plan, and slowing thoughts. Some patients with PSP may complain of forgetfulness, or difficulty finding words. Additionally, personality changes like the loss of interest in ordinary pleasurable activities or increased irritability, difficulty resisting impulses or even inappropriate social behaviour can be seen at some point in the disease. Important to note, these behavioural changes may cause a patient with PSP to have a decreased ability to make decisions about safe movements and predispose them to repeated falls.

Swallowing

Similar to how the muscles used in speech are affected, the first stage of the swallowing process (oral-pharyngeal phase) can be affected in PSP. Typically, patients will have to clear their throat after dinking liquids, cough or even choke. When this symptom progresses, choking with saliva can be a problem, and measures to prevent aspiration (inhaling liquid or food) will be needed. Repeated, or minor episodes of small amounts of food and drink dripping into the lungs can cause aspiration pneumonia, which is the most common cause of death in PSP.
The risk of aspiration is aggravated by overloading the mouth or taking big gulps of beverages that PSP patients might do due to recklessness or impulsiveness (part of the cognitive symptoms). Speech-Language Pathologists are the most qualified health care professionals to assess this and give recommendations to help.

There is a lack of highly effective drugs for the treatment of PSP, and a cure has not yet been discovered. Drugs used in Parkinson's can occasionally help decrease the slowness and stiffness, and very rarely balance symptoms. The natural element Coenzyme Q10 has been studied, but no clear evidence of benefit was seen after 12 months in those patients who used a considerable high dose of it.

For significant drooling, several measures can be taken. Chewing gum can stimulate swallowing and reduce the amount of drooling. Medications applied to the inside of the mouth can decrease the activation of your salivary glands.

An increase in muscle contraction that causes awkward or abnormal postures or movements of the affected limb can also present in PSP. This is called dystonia. For dystonia either of the neck, limbs or the face, treatment with botulinum toxin injections can be used. This medication acts as a temporary relaxant of the muscle producing a decrease of the symptoms of dystonia. The effects last about 8-12 weeks, and can be repeated every few months to maintain the benefit.

Physical therapy

• An evaluation and treatment plan from a Physiotherapist or Physiatrist (a physician specializing in rehabilitation of chronic conditions) can help.
• Physical therapy can help you maintain muscle strength and flexibility. It can also help with balance and mobility. It may help you increase your stamina levels and help cope with fatigue.
• Repeating certain exercises at home by oneself can keep the joints limber and improve well-being. Useful exercises can be found in Parkinson's disease organizations.
  • Fitness Friday – YouTube
• Given balance problems in PSP, exercises while standing should be done cautiously and useful exercises can be performed seated in a chair or lying on a mat. Using a stationary bicycle is feasible if mounting and dismounting are safely monitored.
• Another important goal of physical therapy is teaching the patient to use gait-assistive devices such as a walker.
• Find a Physiotherapist

Speech therapy

• Speech therapy can help with vocal projection and clarity.
• A Speech therapist or Speech-Language Pathologist may suggest:
  • changing your posture to improve the quality of your voice
  • exercises to strengthen the muscles used when speaking
  • speaking slower to emphasize each word
  • breathing techniques to improve your speech
  • exercises to stimulate your swallowing reflex and strengthen the muscles used when swallowing
• Find a Speech-Language Pathologist
• You may also be referred to a Dietitian for dietary advice.
• For example, your diet may need to include food that's easier to swallow.
• Find a Dietitian

Occupational therapy

• Occupational therapy teaches you strategies and modifications that can make the day-to-day activities easier and help you continue to do the activities you like to do.
• Walking aids are of remarkable importance in patients with PSP. Given the tendency to fall backwards, a walker should be weighted in front (i.e., with sandbags over the lower rung) to prevent falls.
• Installation of handrails at home, especially in the bathroom, help as well as removing throw rugs or low coffee tables from the patient's living space.
• Sometimes a heavy walker resembling a small shopping cart with three or four fat, soft rubber wheels and a hand brake can help prevent backwards fall. Shoes with smooth soles can make it easier to slide the first foot forward if freezing of gait is a present symptom.
• An Occupational Therapist can also advise you about modifications you can make to your home to make your life easier, such as installing guide rails, grab bars, or a stair lift.
• Access an Occupational Therapist

Management of visual symptoms

• Difficulty looking down can be helped by special prism glasses, but this can be a limited benefit if additional problems directing the person's attention to objects are present.

Multiple system atrophy (MSA) is a rare progressive neurodegenerative disorder that affects the brain and other areas of the nervous system. Some of these are involved in the control of movement, balance, coordination, while others are responsible for blood pressure, bladder, bowel and sexual function.

There are various types of MSA, although they all share the accumulation of a protein that leads to progressive loss of function and death of different types of cells in the nervous system. This protein is called alpha-synuclein and is also present in individuals with Parkinson's disease. However, MSA can be further distinguished from Parkinson's disease by the involvement of several other areas of the nervous system, including the cerebellum (responsible for coordination and balance), as well as the autonomic nervous system (involved in the control of involuntary actions such as blood pressure, heart rate and bladder control).

All resources are in PDF  format unless otherwise indicated.

• What is Multiple System Atrophy (MSA)?

Symptoms of MSA usually start between the age of 50 and 60 and may include slowness of movements, muscle stiffness, and/or shaking or tremor. Other symptoms include difficulties with balance, and coordination.

Another symptom is the failure of the autonomic nervous system that controls involuntary actions such as blood pressure. Some patients may experience blood pressure drops when rising from a seated or lying down position with associated light-headedness or fainting spells. Additional signs of autonomic involvement also include problems with heart rate, erectile dysfunction, problems with urination and/or constipation.

To date, there is no cure or available treatment to delay the progression of MSA. However, there are several medications and nonpharmacologic (non-drug) treatments that may alleviate some of the underlying symptoms.

Specific drugs might be used in selected individuals to control urinary symptoms, constipation, light-headedness and fainting spells. Occasionally, some patients with MSA can also be prescribed medications to enhance motor (movement) function.

Additional treatments include strategies not related to medications or drugs. For instance, dietary changes might improve some of the constipation experienced by individuals with MSA. Gait training and mobility aids are also an essential part of the MSA management to avoid falls and injuries.

Other health care providers, such as physical, occupational and speech therapists assist doctors in the management of MSA and provide supportive care to patients.

Physical therapy

• Physical therapy can help you maintain muscle strength and flexibility. It can also help with balance and mobility.
• A Physiotherapist might also help with deconditioning and avoiding falls that can result in additional injuries.
• A Physiotherapist will teach you a number of physical exercises you can do every day to help strengthen and stretch your muscles.
• A Physiotherapist may be able to help you increase your stamina levels to help you cope with fatigue.
• Find a Physiotherapist

Speech therapy

• Speech therapy can help with vocal projection and clarity.
• A Speech therapist or Speech-Language Pathologist may suggest:
  • changing your posture to improve the quality of your voice
  • exercises to strengthen the muscles used when speaking
  • speaking slower to emphasize each word
  • breathing techniques to improve your speech
  • exercises to stimulate your swallowing reflex and strengthen the muscles used when swallowing
• Find a Speech-Language Pathologist
• You may also be referred to a Dietitian for dietary advice.
  • For example, your diet may need to include food that's easier to swallow.
  • Find a Dietitian

Occupational therapy

• Occupational therapy teaches you strategies and modifications that can make the day-to-day activities easier and help you continue to do the activities you like to do.
• An Occupational Therapist can also advise you about modifications you can make to your home to make your life easier, such as installing guide rails, grab bars, or a stair lift.
• Access an Occupational Therapist

Additional Resources

• Multiple System Atrophy Coalition
• Defeat MSA | Defeat MSA Canada
• Multiple System Atrophy Trust

Dystonia is a movement disorder that involves involuntary muscle contractions that can result in continuous or repetitive movements (including tremor), twisting, or abnormal postures. It can affect your whole body (generalized), or just one part (focal). It can start at any age.

Clenched or curled toes or a cramped foot are signs of dystonia. These contractions are often painful and can make daily activities difficult.

Dystonia can be classified into three groups: idiopathic (cause unclear), genetic (usually confirmed on genetic testing) and acquired (such as damage to the brain, environmental factors or due to a medication). Dystonia therefore can be a symptom of another movement disorder, such as Parkinson's disease, or it can be a movement disorder on its own.

• The Dystonia Medical Research Foundation Canada (DMRFC) promotes awareness and provides educational and research information. They also facilitate support groups.
• This article by the Michael J. Fox Foundation talks about types of Dystonia and some treatment options.
• Dystonia in Parkinson's Disease – a fact sheet by the Parkinson's Foundation

Symptoms of dystonia can be variable and may be continuous or intermittent. They can initially be mild and may not result in abnormal posturing until a later stage. Sometimes stress or significant life events can worsen dystonia.

Symptoms may include:

• uncontrolled muscle spasms or cramps, such as writer's cramp
• parts of your body twisting into unusual positions
  • your neck may twist to one side, or your feet may turn inwards
• tremor
• uncontrolled blinking
• voice or speech difficulties

At present, there are no disease modifying treatment available for dystonia. Treatment is therefore based on symptom control and can include the following:

• medications to help relax muscles
• botulinum toxin injections administered into affected muscles can be very effective for focal dystonias
• in severe cases, surgical treatment such as deep brain stimulation can be considered

• Physiotherapy: the aim is to treat the secondary issues that come up with dystonia. It can help by improving awareness of body posture and body movement through various techniques such as facilitation, taping and biofeedback. A Physiotherapist can also help you establish appropriate exercise programs.
• Occupational therapy: can recommend assistive devices if needed, such as ankle-foot orthotics, dental devices, and writing devices for writer's cramp.
• Speech and language therapy: may be able to address any speech or swallowing difficulties resulting from dystonia.
• Regular relaxation practices may help with pain and benefit your sense of overall well-being.

Functional Movement Disorders (FMD) are a group of disorders that fall under the umbrella term of Functional Neurological Disorder (FND). They may cause bothersome neurological symptoms that result in an inability to walk, speak, or control limb or facial movements the way you normally would. Although not widely talked about, FND is very common, accounting for the second most frequent reason why someone may be referred to a neurologist.

While symptoms of FMD can vary from person to person, they are united by common characteristics that can be detected by a neurologist trained in diagnosing FMD. These "positive signs" show that altered activity in certain brain circuits are disrupting a person's ability to move normally. This is why doctors sometimes say that FMD is a "software" problem of the brain, rather than a "hardware" one (as in a stroke or MS). People with FMD usually don't have brain damage that can be detected on MRI or other advanced tests. Instead, the brain circuits are structurally intact, but aren't working correctly.

FMD can have multiple risk factors. It is often triggered by injuries, illness, or emotional stress. It can also arise in the context of other neurological disorders, like Parkinson's Disease, which is sometimes called "functional overlay."

Studies have shown that FMD can be as disabling as other neurological disorders like Epilepsy and Multiple Sclerosis. While FMD is not fatal, it may result in severe disability and difficulties in many areas of life. Fortunately, FMD is often treatable.

Newly Diagnosed

Getting a diagnosis of FMD can be confusing. It can be hard to understand what it means, why you are experiencing the symptoms, and what you should do. Here are a few important things to know about FMD:

1. FMD is a disorder of the brain. It is a real condition that causes real disability. It is not "made up," "imagined," "all in your head," or something a person does to themselves. FMD is not your fault.
2. FMD is diagnosed based on "positive signs" seen on physical examination. These are specific indicators, like Hoover's sign, that a trained neurologist looks for during your examination to verify that you have an FMD, and may be able to show you during your assessment. It is not diagnosed by exclusion, meaning you should not be diagnosed with an FMD as a "last resort" after many tests, or simply because a doctor hasn't reached a different diagnosis.
3. FMD is often treatable, and with proper support some patients recover completely. Treatment methods for this disorder are advancing all the time. The first step to recovery is for the patient experiencing symptoms to understand that FMD is the cause of these symptoms, and that it's possible to get better. Recognizing that FMD is a disruption in how the brain communicates with the body, leading treatment centres like Toronto Western now take a multi-disciplinary approach to FMD treatment. This means that the patient becomes a member of a team, which includes a Neurologist, Psychiatrist, Physiotherapist, and Nurse Practitioner. People with FMD often also benefit from support from a Psychologist or Social Worker.
4. It is helpful to learn more about FMD, the sorts of symptoms it can cause, and appropriate treatment strategies. A great resource is neurosymptoms.org for more information.

FMDs come in many forms. Some of the most common are uncontrollable, unwanted movements (tremor, dystonia, jerks), inability to move normally (weakness, paralysis), and disruptions of a person's ability to walk (gait). These symptoms may be episodic (come and go over time). They may be worse or better at different times (fluctuate).

FMDs are a type of Functional Neurological Disorder (FND). Because FND affects core, multi-purpose brain systems (including the Salience Network), you may have other symptoms as well. It is common for people with FMD to have other FND symptoms, such as seizure-like events, problems with swallowing or speech, visual symptoms, dizziness, and others. Pain, fatigue, cognitive fog, and headache are also common among people with FMD.

FMD is a "whole brain" disorder. It affects a person's physical ability, capacity to work, relationships, and emotional health. Recognizing this, most experts today believe the best care for FMDs is multi-disciplinary. Medications are typically not used for the treatment of FMD.

At the Integrated Movement Disorders Program, patients receive cutting-edge treatment for FMD. Our multi-disciplinary team works collaboratively with patients to stabilize symptoms and facilitate recovery. Sessions include aspects of physical therapy, cognitive behavioral techniques, pain management, and activity planning to help patients manage improvement across physical, social, and emotional domains of life. Recovery from FMD is a process, often with ups and downs, with the goal of our program to give you the tools to keep getting better.

There are a number of management strategies that you can implement:

• Mindfulness such as box breathing, meditation, and sensory grounding (Resources are in PDF       format)
• Learn triggers that tend to worsen your symptoms, such as lack of sleep or emotional stress
• Pacing yourself, by gradually increasing activity over time, rather than doing as much as possible on "good days"
  • This may help prevent a "boom and bust" cycle of good and bad days
• Ensuring you are having adequate sleep
• Practicing FND-informed physiotherapy techniques
• Living with a condition like FMD can be stressful and can cause intense feelings of anxiety or depression
  • Talk to you doctor if you are feeling down or hopeless or are no longer taking pleasure in the things you enjoy
  • Depression can be treated with cognitive behavioural therapy or antidepressants

Tremor is an involuntary rhythmic movement involving one or more parts of the body. It is one of the common movement disorders encountered in clinical practice. Tremor can involve any part of the body, and most commonly the hands are affected. When severe, tremor can be disabling and interfere with daily activities. It can also result in social embarrassment.

Tremor can develop spontaneously or it can result from another disorder, such as Parkinson's disease or dystonia. Tremors can sometimes run in families or can result from certain medications, such as steroids, stimulants or inhalers. In many cases, however, the cause is unknown.

Tremor can be present at rest (resting tremor) or more commonly when carrying out activities (action tremor). The most common cause of a resting tremor is Parkinson's disease. There are many causes for an action tremor.

Tremor conditions

The following are examples of the more common conditions movement disorder specialists see in their clinical practice:

Essential tremor

Essential tremor (ET) is one of the most common movement disorders. The condition can affect the hands, head, legs, trunk, and/or voice. The tremor tends to affect both sides of the body and is predominantly present when carrying out activities, such as writing or eating and drinking (action tremor), and less so when resting. Essential tremor can start at any age, even at a young age, and often runs in families.

• Johns Hopkins Medicine has a reliable information page on essential tremor.
• The International Essential Tremor Foundation provides education, awareness, research, and support.

Dystonic tremor

Dystonic tremor tends to occur in individuals who have dystonia. The tremor can affect both sides of the body, however, most commonly one side is affected more than the other. Although the tremor can sometimes mimic a Parkinsonian tremor, there are usually no additional features, such as slowness of movements.

Cerebellar (intention) tremor

Cerebellar tremor can result from damage to the coordination centre of the brain (cerebellum). This type of tremor is characterized ​​​​by slow irregular clumsy movements in the hands, which tend to worsen as you get closer to the target, such as picking up a small coin or pressing a button.

Parkinsonian tremor

Parkinsonian tremor, is one of the hallmark features of Parkinson's disease. Unlike essential tremor, a Parkinsonian tremor tends to occur at rest and affects one side of the body initially. When severe, the tremor can also become present with action. This is also known as a re-emergent tremor.

Involuntary trembling or shaking that may happen at different times and in different situations. Tremors usually don't affect both sides of the body in the same way. They typically occur during movement, doing tasks such as writing, using tools or speaking and occur less when resting.

Treatment options can include the following:

• Medications, such as Propranolol or Primidone, can be used to help reduce tremors.
• Botulinum toxin injections can be very effective, especially with head tremor.
• In severe cases, surgical treatment such as Deep Brain Stimulation (DBS) or focused ultrasound (MRgFUS), may be considered.

The management of tremor is based on symptom control and the above treatment options should be individualized​, allied with the following:

• Occupational therapy: can recommend alternative utensils, such as weighted cutlery.
• Lifestyle changes, such as avoiding caffeine, reducing stress and incorporating relaxation exercises (including meditation and mindfulness ), can be very useful in reducing the severity of tremor.

You are at increased risk of Wilson's disease if your parents or siblings have the condition. Diagnosing the condition as early as possible dramatically increases the chances of successful treatment.

For more information on Wilson's Disease, the Canadian Liver Foundation has information.

• Fatigue, lack of appetite or abdominal pain
• A yellowing of the skin and the whites of the eye (jaundice)
• Golden-brown eye discoloration (Kayser-Fleischer rings)*
• Fluid buildup (swelling) in the legs or abdomen
• Cardiac symptoms including irregular heartbeat and congestion
• Problems with speech, swallowing, salivation, or physical coordination
• Sleep problems including insomnia, excessive sleepiness, sleep-related movement disorders
• Uncontrolled movements (e.g., tremors), muscle stiffness, or slowing of movements
• Behavioural and psychiatric problems (e.g., depression, hallucinations, emotional lability etc.)
• Seizures and epilepsy

* You may need to consult your ophthalmologist to evaluate for this.

Wilson's disease can have serious complications or even be fatal if left untreated.

• Medication can help treat Wilson's disease: there are several medications that facilitate the removal of excess copper from the body, while some prevent its absorption from the gut.
• A diet low in copper is recommended. Avoiding mushrooms, chocolate, dried fruit, nuts, sesame seeds, sesame oil and shellfish. A Dietitian can help – talk to your doctor.
• A liver transplantation may be warranted, especially in cases of severe liver damage.

• Wilson's disease is typically treated with dietary changes, medications, and in some cases, liver transplantation.
• Physiotherapy and Occupational therapy can be beneficial – talk to your doctor.​