The Disease

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WHAT IS PARKINSON’S?

Parkinson’s disease is caused by a degeneration of the cells which produce dopamine in the substantia nigra area of the brain. It is not known why the cells are damaged or destroyed although there are many theories. It is possible that genetics and the environment work together to cause Parkinson’s. Much more research is needed to completely understand how, why and when this disorder occurs. The symptoms of Parkinson’s appear when over half of the dopamine-producing cells are lost.

Dopamine is a brain neurotransmitter which sends signals from one nerve cell to another. It affects the parts of the brain which control smooth, voluntary movements such as walking, writing, throwing a ball or buttoning a shirt.
Dopamine is also essential for involuntary movements including the control of blood pressure and bowel function.

Loss of dopamine can also affect mood and thinking.

FAQ

Here are some commonly asked question about the disease:

How is Parkinson’s diagnosed?

There are no specific brain scans or laboratory tests to confirm the diagnosis of Parkinson’s. Neurologists diagnose it with a careful evaluation of a person’s medical history and a physical examination. Tests may be done to rule out other conditions which may resemble Parkinson’s.

Is there a cure?

At the present time there is no known cure, however many people live full, productive lives. With the treatment that is now available, life expectancy for someone with Parkinson’s is fairly normal. Each year, more and improved treatments are being introduced.

Who develops Parkinson’s? How prevalent is it?

There are approximately 100,000 people with Parkinson’s in Canada, 1,500 in Newfoundland and Labrador. Up to 20% of individuals with Parkinson’s develop symptoms before the age of 55. This is known as Young Onset Parkinson’s. Parkinson’s is usually diagnosed between the ages of 55 and 65, with around 60 being the average age of diagnosis.

Is Parkinson’s genetic?

A genetic cause of Parkinson’s appears in only a very small number of cases, approximately 5% – 10%. Where it may appear to run in families, researchers are looking at environmental factors shared by the family or community in addition to examining potential genetic links. The vast majority of cases of Parkinson’s disease are from unknown causes.

How can Parkinson’s progress? What is to be expected?

Early symptoms generally occur gradually, and progress more rapidly in some people than others. The tremor may begin to interfere with daily activities, and other symptoms may appear. Parkinson’s is progressive, meaning the symptoms may worsen over time, and the rate of this progression is different for each person. There is no way of knowing how slowly or quickly Parkinson’s may progress. Parkinson’s is, however, described as the most slowly progressing neurological disorder.

Does Parkinson’s affect mental health?

Mental illness is a term used to describe a disruption in the balance between mind, body and spirit and a change in one’s mental or emotional well-being. Psychological symptoms of Parkinson’s are considered to be as important as the physical symptoms.

Some people feel there is a stigma associated with mental health issues and some may still feel that psychological symptoms are an example of personal weakness. Do not allow these preconceptions to stop you from talking to your health care professionals and getting the help you need!

Note to caregivers:
Some caregivers report that the psychological changes that can accompany Parkinson’s are more difficult to deal with than the physical changes. It is therefore important for caregivers to be aware that they may need help looking after their mental health balance as well.
Adapted from Mind, Mood and Memory, published by the National Parkinson Foundation.

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    MOTOR SYMPTOMS

    Most common motor symptoms are:

    Resting tremor – repetitive shaking movements occurring in the arms and/or legs at rest. (Tremors are the first symptom to appear in about 70% of people with Parkinson’s.)

    Rigidity – increased stiffness in muscles and joints.

    Bradykinesia – slowness of movement, including all actions such as walking and writing.

    Lack of coordination – postural impairment or loss of balance.

     

    Other symptoms:

    Hypomimia – reduced facial expression, making a person appear uninterested or sad when they are not.

    Hypophonia – speaking in a very soft voice. This may involve deterioration in the rhythm and quality of the voice.

    Micrographia – small, cramped handwriting.

    NONMOTOR SYMPTOMS

    Most common motor symptoms are:

    Drooling

    Change in Taste and Smell

    Constipation

    Urinary problems – bladder urgency and frequency.

    Pain – stiffness, cramps, spasms or other muscle pain.

    Insomnia – difficulty falling or staying asleep.

    Fatigue – excessive sleeping or feeling sleepy during the day.

    Cognitive and mood changes, including:

    • Depression
    • Anxiety
    • Forgetfulness and confusion
    • Loss of impulse control
    • Dementia, hallucinations
    • Delusions

    DIAGNOSIS

    Newly Diagnosed

    Everyone responds in a different way when told they have Parkinson’s disease. For some, the diagnosis may be a relief. Others, however, may find themselves in denial and may need some time to accept the diagnosis.

    As you adjust, understand that a wide variety of emotional reactions are normal and very common. You will likely have questions about how to cope and what the future may hold.
    Parkinson Society Newfoundland and Labrador (PSNL) has a number of services and resources available for your use.


    Advancing Stages

    The Parkinson’s journey is different for everyone. As the disease progresses, it is wise to develop a specific plan that meets your needs. You may find that you require assistance with mobility, personal care, and other aspects of your daily routine. Medications may become less effective in treating all symptoms. In the advancing stages of Parkinson’s, care is focused on safety, comfort, and the best possible quality of life.

    There may be difficult decisions and changes that need to be addressed. Those with Parkinson’s, their caregivers and their family members need support and the appropriate resources to cope effectively.

    YOUNG ONSET PARKINSON’S DISEASE (YOPD)

    Young Onset Parkinson’s Disease (YOPD) is defined as a diagnosis of Parkinson’s disease between the ages of 21 and 55. YOPD accounts for 35% of all cases of Parkinson’s. In YOPD there is an increased risk of having an inherited form of Parkinson’s, but this is still only a small proportion of YOPD.

    The needs of those with YOPD differ from those with later-onset Parkinson’s. Being diagnosed with a chronic, progressive neurological condition in the prime of life is likely to be a very emotional experience. You may have children, you are likely still working and on top of these life stresses, you now have a Parkinson’s diagnosis.

    Review our resources to gain a better understanding of Parkinson’s and the unique issues faced by individuals with YOPD. As you read through the material, remember:

    People with YOPD usually experience a much slower progression of their disease.

    People with YOPD are often able to live a full life after their diagnosis, including a full-time occupation and other activities such as sports and even, in some cases, giving birth to healthy babies.

    Resources: Young Onset Parkinson’s Disease (YOPD) Webinar Series [YouTube Videos]

    CAREGIVERS

    Caregivers (also known as carers and care partners) of those living with Parkinson’s disease provide ongoing assistance and support to the emotional, spiritual and social needs of another person. Some ways a caregiver can provide assistance include but are not limited to:

    • Advocating with or on behalf of care-receivers;
    • Coordinating the care plan;
    • Handling financial and legal affairs;
    • Providing emotional support;
    • Providing assistance with housecleaning, laundry, meal preparation, yard/outdoor work;
    • Helping with personal care;
    • Planning respite support;
    • Researching available services and programs
    • Provide mode of transportation or accompany care-receiver to medical appointments, social events, etc.; and/or,
    • Coordinating a move: to an independent living apartment or facility.

    Information regarding Caregivers Out of Isolation NL
    Website: www.caregiversoutofisolationnl.ca
    Caregiver Line 1-888-571-2273 / 1-709-726-2370

    RELATED DISEASES

    There are many causes of tremors and other symptoms associated with Parkinson’s disease and it may take time to make an accurate diagnosis. A neurologist who specializes in movement disorders is the best person to make or confirm a diagnosis. The following information describes other disorders that may be confused with Parkinson’s:

    The following conditions are rare, and can be found on the website of the National Organization for Rare Disorders. See Rare Diseases.

    Essential Tremor (ET)

    Essential Tremor is a chronic neurological condition characterized by involuntary, rhythmic tremor of a body part. The most frequently affected areas of the body are the hands, arms and head, followed by the voice, tongue, legs, or trunk.Essential tremor isn’t caused by other conditions and it is a common movement disorder.
    Sources: International Essential Tremor Foundation, The Mayo Clinic

    Medication-Induced Parkinsonism

    Some common medications can cause Parkinson-like symptoms. Medications frequently associated with the development of Parkinsonism (the name given to a group of disorders with similar features including four primary symptoms: tremor, rigidity, slowness of movement and postural instability) include antipsychotics, metoclopramide, reserpine, tetrabenazine and some blood pressure medications such as cinnarizine and flunarizine. Symptoms usually abate within weeks to months after discontinuing the problem medication.

    Dementia with Lewy Bodies (DLB)

    This disorder is characterized by early dementia, prominent hallucinations, changes in cognitive functioning throughout the day, and symptoms similar to Parkinson’s disease. Other symptoms include difficulties with attention, problem solving, planning, and with recognizing figures and images.

    See Lewy Body Dementia Association.

    Progressive Supranuclear Palsy (PSP)

    Early development of balance problems, frequent falls, rigidity or stiffness of the trunk of the body, and (eventually) eye-movement problems can be symptoms of PSP. Symptoms usually begin after age 50 and progress more rapidly than those associated with Parkinson’s disease. The most characteristic eye movement abnormality is called vertical gaze paralysis, making looking up and looking down very difficult.

    See the Society for Progressive Supranuclear Palsy.

    Corticobasal Degeneration (CBD)

    This is the least common cause of symptoms similar to Parkinson’s is CBD. It often affects one side far more than the other and it may progress more rapidly than Parkinson’s disease. The initial symptoms of CBD usually develop after age 60 and include asymmetric bradykinesia (uncontrolled movement focusing on one side or the other), rigidity, limb dystonia (abnormal, prolonged, and repetitive muscle contractions that may cause twisting or jerking), balance problems, and speech/language problems. There is often marked and disabling apraxia (the loss of ability to carry out an intended movement even though there is no weakness or sensory loss in the arm or leg).

    Multiple System Atrophy (MSA)

    MSA is a neurodegenerative disease of unknown cause. Initially it may be difficult to distinguish from Parkinson’s disease, but it is far less common and progresses more rapidly. The average age of onset is in the mid-50s. Symptoms include one or a combination of the following: bradykinesia, poor balance, abnormal autonomic function, rigidity, or difficulty with coordination. Abnormalities of autonomic function include impotence, low blood pressure upon standing (orthostatic hypotension), excessive or reduced sweating, and constipation.

    Vascular Parkinsonism

    Multiple small strokes can cause Parkinson’s-like symptoms. People with this disorder are more likely to have gait difficulty rather than tremors and are more likely to have symptoms that are worse in the lower limbs rather than the upper limbs. Some will also report the abrupt onset of symptoms or give a history of a step form of symptom development (symptoms get worse, then plateau for a period, then get worse again).