Monday, April 15, 2024

Parkinson’s Disease Patient Education Handout

What Research Is Being Done

Neurology – Topic 13 – Parkinson’s disease female patient

Current research programs funded by the National Institute of Neurological Disorders and Stroke are using animal models to study how the disease progresses and to develop new drug therapies. Scientists looking for the cause of PD continue to search for possible environmental factors, such as toxins, that may trigger the disorder, and study genetic factors to determine how defective genes play a role. Researchers are investigating how cellular processes controlled by genes contribute to neurodegeneration , including the toxic accumulation of the protein alpha-synuclein in nerve cells and how the loss of dopamine impairs communication between nerve cells. Other scientists are working to develop new protective drugs that can delay, prevent, or reverse the disease. Key NINDS programs include the Parkinson’s Disease Biomarkers Program, which is aimed at discovering biomarkers–new ways to identify people at risk for developing PD and to track the progression of the disease and the Accelerating Medicines Partnership for Parkinson’s Disease , in which the National Institutes of Health, multiple biopharmaceutical and life science communities, and nonprofit advocacy organizations work to identify and validate biomarkers for PD. More information about Parkinson’s Disease research is available at:

The four primary symptoms of PD are:

The four primary symptoms of PD are:

The four primary symptoms of PD are:

Home And Occupational Environments

Patient activities and environmental precautions.Patients should take reasonable care to avoid devices that generate strong EMI, which may cause the neurostimulation system to unintentionally turn on or off. Patients should also avoid any activities that would be potentially unsafe if their symptoms were to return unexpectedly. These activities include but are not limited to climbing ladders and operating potentially dangerous machinery, power tools, and vehicles. Sudden loss of stimulation may cause patients to fall or lose control of equipment or vehicles, injure others, or bring injury upon themselves.

Control of the patient controller. Advise patients to keep the patient controller away from children and pets in order to avoid potential damage or other hazards.

Activities requiring excessive twisting or stretching.Patients should avoid activities that may put undue stress on the implanted components of the neurostimulation system. Activities that include sudden, excessive or repetitive bending, twisting, or stretching can cause component fracture or dislodgement. Component fracture or dislodgement may result in loss of stimulation, intermittent stimulation, stimulation at the fracture site, and additional surgery to replace or reposition the component.

Household appliances. Household appliances that contain magnets may unintentionally cause the neurostimulation system to turn on or turn off.

Some Other General Points

Stay as active as possible. Exercise regularly as much as you are able. This may not be possible when the condition is more advanced. However, it is something to consider when symptoms are not too bad. You may walk more slowly than before but a daily walk is good exercise and may help to loosen up stiff muscles. Well-meaning relatives or friends may tell you to rest and take things easy. However, as much as possible and for as long as possible, resist the temptation for others to do things for you just because it may be quicker.

Constipation is common in people with PD. Help to reduce the chance of this by having lots to drink and eat plenty of vegetables, fruit, and foods high in fibre. Exercise can also improve constipation. Sometimes laxatives may be needed to treat constipation.

Some medicines taken for other conditions can interfere with dopamine and make PD worse. These may be prescribed for such things as mental illness, sickness, vertigo and dizziness. Check with your doctor if you are unsure about any medicines that you take.

Driving. If you are a driver you should tell the DVLA and your insurance company if you develop PD. Your insurance may be invalid if you do not. Depending on the severity of symptoms and the medicines that you are taking, you may still be allowed to drive following a medical assessment.

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Medications For People With Parkinsons Disease

Symptoms of Parkinsons disease result from the progressive degeneration of nerve cells in the brain and other organs such as the gut, which produce a neurotransmitter called dopamine. This causes a deficiency in the availability of dopamine, which is necessary for smooth and controlled movements. Medication therapy focuses on maximising the availability of dopamine in the brain. Medication regimes are individually tailored to your specific need. Parkinsons medications fit into one of the following broad categories:

  • levodopa dopamine replacement therapy
  • dopamine agonists mimic the action of dopamine
  • COMT inhibitors used along with levodopa. This medication blocks an enzyme known as COMT to prevent levodopa breaking down in the intestine, allowing more of it to reach the brain
  • anticholinergics block the effect of another brain chemical to rebalance its levels with dopamine
  • amantadine has anticholinergic properties and improves dopamine transmission
  • MAO type B inhibitors prevent the metabolism of dopamine within the brain.

Stay On Top Of Insurance

Handout: Parkinson

If you were always the one who handled questions of insurance coverage, great but if not, you may want to familiarize yourself with the terms of your health insurance. Youll need to know details about if and to what extent your plan covers prescriptions, therapy sessions and other unexpected items.

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Symptoms Of Parkinsons Disease

The type, number, severity and progression of Parkinsons disease symptoms vary greatly. Every person is affected differently they may not get every symptom.

Some of the more common symptoms are:

  • resting tremor
  • rigidity
  • blood pressure fluctuation
  • constipation.

People living with Parkinsons for some time may experience hallucinations , paranoia and delusions . These symptoms are able to be treated so have a talk with your doctor.

How Do Symptoms Progress And What Is The Outlook

The symptoms of PD tend to become gradually worse over time. However, the speed of progression varies greatly from person to person. When symptoms first begin, you may not need treatment when symptoms are relatively mild.

Most people with PD can expect to have some time of relatively mild symptoms. Then, when the symptoms become worse, they can expect several years of good or reasonable control of the symptoms with medication. But everyone is different and it is difficult to predict for an individual how quickly the disease will progress. Some people may only be slightly disabled 20 years after PD first begins, whereas others may be very disabled after 10 years.

Research into PD is active. For example, one main aim of research is to find medicines that prevent the damage to the affected cells, rather than just treating the symptoms, which is the main value of treatment at present. Further research on these chemicals continues. Research is underway using stem cell therapy to help treat PD. Other researchers are looking at alpha synuclein, a protein that gathers around the junction between nerve cells and is thought to affect the way messages are conducted between the brain and the nerves controlling movement.

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What Is Parkinsons Disease

Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.

Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.

Parkinson’s Disease: Resources For Patients And Families

Mark Burek – Parkinson’s Disease Patient

Parkinsons disease affects every patient differently. This information can help you gain a better understanding of how the disease may affect you and your caregivers.

Resources include:

  • A handbook on Parkinsons disease
  • Links to national Parkinsons organizations
  • Exercise resources
  • Worksheets to help you manage your condition

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Support For People With Parkinsons Disease

Early access to a multidisciplinary support team is important. These teams may include doctors, physiotherapists, occupational therapists, speech therapists, dietitians, social workers and specialist nurses. Members of the team assess the person with Parkinsons disease and identify potential difficulties and possible solutions.There are a limited number of multidisciplinary teams in Victoria that specialise in Parkinsons disease management. But generalist teams are becoming more aware of how to help people with Parkinsons disease.

Incidence Of Parkinsons Disease

Its estimated that approximately four people per 1,000 in Australia have Parkinsons disease, with the incidence increasing to one in 100 over the age of 60. In Australia, there are approximately 80,000 people living with Parkinsons disease, with one in five of these people being diagnosed before the age of 50. In Victoria, more than 2,225 people are newly diagnosed with Parkinsons every year.

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Other Medicines Used For Pd

  • Catechol-O-methyltransferase inhibitors are relatively new medicines. They include tolcapone, entacapone and opicapone. These help to stop the breakdown of levodopa by the body, so more of each dose of levodopa can get into the brain to work. A COMT inhibitor is sometimes advised in addition to levodopa when symptoms are not well controlled by levodopa alone.
  • Other medicines are sometimes used to help relieve symptoms. They have various effects which try to correct the chemical imbalance in the brain. They include beta-blockers, amantadine and anticholinergic medicines. One of these may be tried when symptoms are mild. However, you are likely to need levodopa or a dopamine agonist at some point.

Various things may influence which medicine is advised. For example, your age, severity of symptoms, how well your symptoms respond to treatment, if side-effects develop, other medicines that you may take, etc. Your specialist will advise on the best medicine for you to take. Whatever medicine or medicines you are prescribed, read the leaflet in the medicine packet for a full list of possible side-effects. Mention to your doctor if you develop a troublesome side-effect. A modification of the dose, dose schedule, or the type of medication, may be possible to help keep side-effects to a minimum.

How Is Psp Different From Parkinson’s Disease

Parkinsonâs Disease: Home Exercise Tips â Therapy Insights

PSP is often misdiagnosed as Parkinsons disease, especially early in the disorder, as they share many symptoms, including stiffness, movement difficulties, clumsiness, bradykinesia , and rigidity of muscles. The onset of both diseases is in late middle age. However, PSP progresses more rapidly than Parkinsons disease.

  • People with PSP usually stand exceptionally straight or occasionally tilt their heads backward . This is termed axial rigidity. Those with Parkinson’s disease usually bend forward.
  • Problems with speech and swallowing are much more common and severe in PSP than in Parkinson’s disease and tend to show up earlier in the disease.
  • Eye movements are abnormal in PSP but close to normal in Parkinson’s disease.
  • Tremor is rare in PSP but very common in individuals with Parkinsons disease.

Although individuals with Parkinson’s disease markedly benefit from the drug levodopa, people with PSP respond minimally and only briefly to this drug.

People with PSP show accumulation of the protein tau in affected brain cells, whereas people with Parkinsons disease show accumulation of a different protein called alpha-synuclein.

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Causes Of Parkinsons Disease

At present, we do not know the cause of Parkinsons disease. In most people there is no family history of Parkinsons Researchers worldwide are investigating possible causes, including:

  • environmental triggers, pesticides, toxins, chemicals
  • genetic factors
  • combinations of environment and genetic factors
  • head trauma.

How Will My Doctor Diagnose It

Your doctor will talk with you about your symptoms and examine you. If your doctor isn’t sure you have Parkinson disease, he or she may ask you to see a specialist such as a neurologist. Because diagnosing this disease can be hard, especially in the early stages, your doctor will go over your symptoms and reexamine you to be sure the diagnosis is correct during follow-up visits.

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What Are The Treatments For Parkinson’s Disease

There is no cure for PD, and no treatment prevents the disease from progressing. However, treatments can usually ease symptoms.

  • At first, you may not need any treatment when the symptoms are mild. A specialist may simply see you every now and then to monitor how the disease is progressing.
  • A medicine that eases symptoms is usually started when symptoms become troublesome.
  • Therapies such as physiotherapy, occupational therapy and speech therapy may also be useful as the disease progresses.
  • Surgery may be an option for severe cases.

Who Gets It And What Causes It

Neurology – Topic 14 – Parkinsons disease – examining a patient

About one in every 100 people older than 60 years will get Parkinson disease. We don’t know exactly what causes it. It isn’t contagious, and you usually won’t inherit it from your parents or pass it on to your children. If you develop Parkinson disease after age 50, there is no greater chance that your children or other relatives will get the disease.

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Who Develops Parkinson’s Disease

PD mainly develops in people over the age of 50. It becomes more common with increasing age. About 5 in 1,000 people in their 60s and about 40 in 1,000 people in their 80s have PD. It affects men and women but is a little more common in men. Rarely, it develops in people under the age of 50.

PD is not usually inherited and it can affect anyone. However, one type of PD, which appears in the small number of people who develop it before the age of 50, may be linked to inherited factors. Several family members may be affected.

How Do I Know If Palliative Care Is Right For Me

Palliative care may be right for you if you suffer from pain, stress or other symptoms due to a serious illness. Serious illnesses may include cancer, heart disease, lung disease, kidney disease, Alzheimers, amyotrophic lateral sclerosis , multiple sclerosis, Parkinsons and many more. Palliative care can be provided at any stage of an illness and along with treatment meant to cure you.

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Resources For Specialized Populations

For Care Partners

When one person in a couple or family is affected by Parkinsons disease, the other family members live with it as well. To keep your care partnering relationship healthy and balanced, its important that the care partner finds time to take a break from caregiver duties, has some outside interests, and has others they can turn to for support and resource information.

Young Onset Parkinsons Disease

For those who have been diagnosed under the age of 50, APDA provides resources and information to help younger people with Parkinsons Disease live active and productive lives. Our Early/Young Onset section offers a wide range of resource links and discusses issues that are particularly relevant to people with young onset Parkinsons disease, such as ongoing employment, parenting, and planning for the near and distant future.

Veterans with PD

In 2017, APDA published Helping Those Who Serve: Parkinsons Disease Information for Veterans Community. This manual offers general information about Parkinsons diagnosis, symptoms and treatment, tips for coping with disease progression and support for care partners. It also provides step by step directions on how to access the Veterans Affairs system and receive care from the VA PADRECC and consortium centers across the country. The manual is accessible on the page linked below, and in print.

Email:

Where Can I Get More Information

Parkinson

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network at:

Office of Neuroscience Communications and EngagementNational Institute of Neurological Disorders and StrokeNational Institutes of HealthBethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

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What Causes Parkinson’s Disease

PD is a disorder of the nervous system. A small part of the brain, called the substantia nigra, is mainly affected. This area of the brain sends messages down nerves in the spinal cord to help control the muscles of the body. Messages are passed between brain cells, nerves and muscles by chemicals called neurotransmitters. The brain cells in the substantia nigra produce dopamine, the main neurotransmitter.

If you have PD, a number of cells in the substantia nigra become damaged and die. The exact cause of this is not known. Over time, more and more cells become damaged and die. As cells are damaged, the amount of dopamine that is produced is reduced. A combination of the reduction of cells and a low level of dopamine in the cells in this part of the brain causes nerve messages to the muscles to become slowed and abnormal.

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