Wednesday, April 17, 2024

Parkinson’s Disease Information For Patients

What Is Parkinsons Disease

What is Parkinson’s Disease?

Parkinsons disease is a condition where a part of your brain deteriorates, causing more severe symptoms over time. While this condition is best known for how it affects muscle control, balance and movement, it can also cause a wide range of other effects on your senses, thinking ability, mental health and more.

What Can I Expect If I Have This Condition

Parkinsons disease is a degenerative condition, meaning the effects on your brain get worse over time. However, this condition usually takes time to get worse. Most people have a normal life span with this condition.

You’ll need little to no help in the earlier stages and can keep living independently. As the effects worsen, youll need medication to limit how the symptoms affect you. Most medications, especially levodopa, are moderately or even very effective once your provider finds the minimum dose you need to treat your symptoms.

Most of the effects and symptoms are manageable with treatment, but the treatments become less effective and more complicated over time. Living independently will also become more and more difficult as the disease worsens.

How long does Parkinsons disease last?

Parkinsons disease isnt curable, which means its a permanent, life-long condition.

Whats the outlook for Parkinsons disease?

Parkinson’s disease isn’t fatal, but the symptoms and effects are often contributing factors to death. The average life expectancy for Parkinson’s disease in 1967 was a little under 10 years. Since then, the average life expectancy has increased by about 55%, rising to more than 14.5 years. That, combined with the fact that Parkinson’s diagnosis is much more likely after age 60, means this condition doesn’t often affect your life expectancy by more than a few years .

What Tests Will Be Done To Diagnose This Condition

When healthcare providers suspect Parkinsons disease or need to rule out other conditions, various imaging and diagnostic tests are possible. These include:

New lab tests are possible

Researchers have found possible ways to test for possible indicators or Parkinsons disease. Both of these new tests involve the alpha-synuclein protein but test for it in new, unusual ways. While these tests cant tell you what conditions you have because of misfolded alpha-synuclein proteins, that information can still help your provider make a diagnosis.

The two tests use the following methods.

  • Spinal tap. One of these tests looks for misfolded alpha-synuclein proteins in cerebrospinal fluid, which is the fluid that surrounds your brain and spinal cord. This test involves a spinal tap , where a healthcare provider inserts a needle into your spinal canal to collect some cerebrospinal fluid for testing.
  • Skin biopsy. Another possible test involves a biopsy of surface nerve tissue. A biopsy includes collecting a small sample of your skin, including the nerves in the skin. The samples come from a spot on your back and two spots on your leg. Analyzing the samples can help determine if your alpha-synuclein has a certain kind of malfunction that could increase the risk of developing Parkinsons disease.

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Diagnosis And Management Of Parkinsons Disease

There are no diagnostic tests for Parkinsons. X-rays, scans and blood tests may be used to rule out other conditions. For this reason, getting a diagnosis of Parkinsons may take some time.

No two people with Parkinsons disease will have exactly the same symptoms or treatment. Your doctor or neurologist can help you decide which treatments to use.

People can manage their Parkinsons disease symptoms through:

  • seeing a Doctor who specialises in Parkinsons
  • medication
  • multidisciplinary therapy provided for example, by nurses, allied health professionals and counsellors
  • deep brain stimulation surgery .

When Should I See My Healthcare Provider Or When Should I Seek Care

Understanding Parkinsons Disease  Spacedge Creation

You should see your healthcare provider as recommended, or if you notice changes in your symptoms or the effectiveness of your medication. Adjustments to medications and dosages can make a huge difference in how Parkinsons affects your life.

When should I go to ER?

Your healthcare provider can give you guidance and information on signs or symptoms that mean you should go to the hospital or seek medical care. In general, you should seek care if you fall, especially when you lose consciousness or might have an injury to your head, neck, chest, back or abdomen.

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Managing Depression In Parkinsons Disease

People with Parkinsons, family members and caregivers may not always recognize the signs of depression and anxiety. If you are experiencing depression as a symptom of Parkinsons, it is important to know it can be treated.

Here are some suggestions:

  • For information and support on living well with Parkinsons disease, contact our Information and Referral line.
  • As much as possible, remain socially engaged and physically active. Resist the urge to isolate yourself.
  • You may want to consult a psychologist and there are medications that help relieve depression in people with Parkinsons, including nortriptyline and citalopram .

What Is Parkinson’s Disease

Parkinsons disease occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a movement disorder. But constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinsons. PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time.

The experience of living with Parkinson’s over the course of a lifetime is unique to each person. As symptoms and progression vary from person to person, neither you nor your doctor can predict which symptoms you will get, when you will get them or how severe they will be. Even though broad paths of similarity are observed among individuals with PD as the disease progresses, there is no guarantee you will experience what you see in others.

Estimates suggest that Parkinsons affects nearly 1 million people in the United States and more than 6 million people worldwide.

For an in-depth guide to navigating Parkinsons disease and living well as the disease progresses, check out our Parkinsons 360 toolkit.

What Is Parkinson’s Disease?

Dr. Rachel Dolhun, a movement disorder specialist and vice president of medical communications at The Michael J. Fox Foundation, breaks down the basics of Parkinson’s.

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Parkinsons Disease: Causes Symptoms And Treatments

Parkinsons disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination.

Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. They may also have mental and behavioral changes, sleep problems, depression, memory difficulties, and fatigue.

While virtually anyone could be at risk for developing Parkinsons, some research studies suggest this disease affects more men than women. Its unclear why, but studies are underway to understand factors that may increase a persons risk. One clear risk is age: Although most people with Parkinsons first develop the disease after age 60, about 5% to 10% experience onset before the age of 50. Early-onset forms of Parkinsons are often, but not always, inherited, and some forms have been linked to specific gene mutations.

Discuss With Your Physician

Parkinson’s Disease & Medication – What’s New

Non-motor symptoms can sometimes be difficult to recognize. Therefore, it is important to make your doctor aware of them.

One useful resource is the PD NMS Questionnaire. You can use this to record your symptoms and discuss them with your doctor.

Dr. Ron Postuma, whose research was funded by donations to the Parkinson Canada Research Program, has also developed tools to help people with Parkinsons and their physicians identify and manage non-motor symptoms.

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Causes Of Parkinson’s Disease

Parkinson’s disease is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a reduction in a chemical called dopamine in the brain.

Dopamine plays a vital role in regulating the movement of the body. A reduction in dopamine is responsible for many of the symptoms of Parkinson’s disease.

Exactly what causes the loss of nerve cells is unclear. Most experts think that a combination of genetic and environmental factors is responsible.

How Is It Treated And Is There A Cure

For now, Parkinsons disease is not curable, but there are multiple ways to manage its symptoms. The treatments can also vary from person to person, depending on their specific symptoms and how well certain treatments work. Medications are the primary way to treat this condition.

A secondary treatment option is a surgery to implant a device that will deliver a mild electrical current to part of your brain . There are also some experimental options, such as stem cell-based treatments, but their availability often varies, and many aren’t an option for people with Parkinsons disease.

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Impact On Families And Carers

Informal carers spendmany hours dailyproviding care for people living with PD.This can be overwhelming. Physical, emotional and financial pressures can cause great stress to families and carers, and support is required from the health, social, financial and legal systems. Useful support resources from other conditions can be drawn upon, such as WHOs iSupport programme for dementia.

Other Medicines Used For Pd

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  • 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.

Also Check: How Does Parkinson’s Get Diagnosed

What Medications And Treatments Are Used

Medication treatments for Parkinsons disease fall into two categories: Direct treatments and symptom treatments. Direct treatments target Parkinsons itself. Symptom treatments only treat certain effects of the disease.

Medications

Medications that treat Parkinsons disease do so in multiple ways. Because of that, drugs that do one or more of the following are most likely:

Several medications treat specific symptoms of Parkinson’s disease. Symptoms treated often include the following:

  • Erectile and sexual dysfunction.
  • Hallucinations and other psychosis symptoms.

Deep brain stimulation

In years past, surgery was an option to intentionally damage and scar a part of your brain that was malfunctioning because of Parkinsons disease. Today, that same effect is possible using deep-brain stimulation, which uses an implanted device to deliver a mild electrical current to those same areas.

The major advantage is that deep-brain stimulation is reversible, while intentional scarring damage is not. This treatment approach is almost always an option in later stages of Parkinson’s disease when levodopa therapy becomes less effective, and in people who have tremor that doesnt seem to respond to the usual medications.

Experimental treatments

Researchers are exploring other possible treatments that could help with Parkinsons disease. While these arent widely available, they do offer hope to people with this condition. Some of the experimental treatment approaches include:

What Causes Parkinsons Movement Symptoms

Dopamine is a chemical messenger that is primarily responsible for controlling movement, emotional responses and the ability to feel pleasure and pain. In people with Parkinsons, the cells that make dopamine are impaired. As Parkinsons progresses, more dopamine-producing brain cells die. Your brain eventually reaches a point where it stops producing dopamine in any significant amount. This causes increasing problems with movement.

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How Are Cognitive Problems Treated

Much remains to be learned about the basic biology that underlies cognitive changes in PD. Researchers work towards the development of diagnostic tests to identify people who seem to be at greatest risk for cognitive changes and to differentiate cognitive problems in people with PD from those that occur in another disorder related but different known as dementia with Lewy bodies.A combination of medications and behavioral strategies is usually the best treatment for cognitive problems in PD.

Seeking Help For Cognitive Changes

Parkinson’s Motor Symptoms Co-Management: Occupational Therapy and Neurology

Cognitive change is a sensitive issue. In fact, the doctor is often as hesitant to address this subject as the person with PD is to ask about it. Sometimes, the doctor will delay discussing cognitive impairment out of concern for the person who is still coping with the shock of a new PD diagnosis or struggling with motor symptoms.

For this reason, the person with PD often needs to be the one to initiate the conversation. Tell your doctor if you or your loved one is experiencing problems that upset the family or cause interruptions at work.

Cognitive issues are never too mild to address with your care team. A doctor can provide ways to help, often referring you to a psychiatrist, neuropsychologist, speech or occupational therapist for further evaluation and assistance. The neuropsychological evaluation can be particularly useful, especially in the early stages of a cognitive problem. Having this baseline test can help the doctor determine whether future changes are related to medications, the progression of the PD itself or to other factors such as depression.

When reporting symptoms of mild cognitive impairment, the doctor will first want to rule out causes other than PD, such as vitamin B-12 deficiency, depression, fatigue or sleep disturbances. It should be noted that PD does not cause sudden changes in mental functioning. If a sudden change occurs, the cause is likely to be something else, such as a medication side-effect.

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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.

How Is Parkinsons Diagnosed

Doctors use your medical history and physical examination to diagnose Parkinson’s disease . No blood test, brain scan or other test can be used to make a definitive diagnosis of PD.

Researchers believe that in most people, Parkinson’s is caused by a combination of environmental and genetic factors. Certain environmental exposures, such as pesticides and head injury, are associated with an increased risk of PD. Still, most people have no clear exposure that doctors can point to as a straightforward cause. The same goes for genetics. Certain genetic mutations are linked to an increased risk of PD. But in the vast majority of people, Parkinsons is not directly related to a single genetic mutation. Learning more about the genetics of Parkinsons is one of our best chances to understand more about the disease and discover how to slow or stop its progression.

Aging is the greatest risk factor for Parkinsons, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger.

Men are diagnosed with Parkinsons at a higher rate than women and whites more than other races. Researchers are studying these disparities to understand more about the disease and health care access and to improve inclusivity across care and research.

Aging is the greatest risk factor for Parkinsons, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger.

The Michael J. Fox Foundation has made finding a test for Parkinsons disease one of our top priorities.

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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.

Icipate In Clinical Trials

World Parkinson

Clinical trials also contribute to the further treatment and understanding of Parkinsons disease and potentially provide access to the newest therapies. For more information and to learn if a clinical trial may be right for you, consult with your healthcare team.

The following websites provide information about ongoing clinical trials and how you or someone you know can enroll:

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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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