Thursday, June 16, 2022
Thursday, June 16, 2022
HomeLivingWhat Is It Like To Live With Parkinson's Disease

What Is It Like To Live With Parkinson’s Disease

Parkinsons Disease: Living With The Early Stages Of Parkinson’s Disease

What’s it like to have Parkinson’s?

In the early stages of Parkinson’s disease, many people lead an independent and active life. The symptoms and worries about the future can still be hard to cope with, though. But there are various ways to deal with the psychological burden and the restrictions in everyday life.

Parkinson’s affects many areas of life be it work, relationships, family or leisure activities. Even if everyday life only changes slightly in the early stages of the disease, many people are worried about losing their independence and needing nursing care. But it’s often possible to lead a life that’s not restricted too much by the disease for a long time. It’s still a good idea to be prepared for a time when you will need more help, though.

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.

Who Gets Parkinsons Disease

Parkinsonâs disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimerâs disease. Estimates regarding the number of people in the United States with Parkinsonâs range from 500,000 to 1,500,000, with 50,000 to 60,000 new cases reported annually. No objective test for Parkinsonâs disease exists, so the misdiagnosis rate can be high, especially when a professional who doesnât regularly work with the disease makes the diagnosis.

Read Also: What Essential Oils Are Good For Parkinson’s Disease

What Is The Treatment For Parkinson’s Disease

    There is currently no treatment to cure Parkinson’s disease. Several therapies are available to delay the onset of motor symptoms and to ameliorate motor symptoms. All of these therapies are designed to increase the amount of dopamine in the brain either by replacing dopamine, mimicking dopamine, or prolonging the effect of dopamine by inhibiting its breakdown. Studies have shown that early therapy in the non-motor stage can delay the onset of motor symptoms, thereby extending quality of life.

    The most effective therapy for Parkinson’s disease is levodopa , which is converted to dopamine in the brain. However, because long-term treatment with levodopa can lead to unpleasant side effects , its use is often delayed until motor impairment is more severe. Levodopa is frequently prescribed together with carbidopa , which prevents levodopa from being broken down before it reaches the brain. Co-treatment with carbidopa allows for a lower levodopa dose, thereby reducing side effects.

    In earlier stages of Parkinson’s disease, substances that mimic the action of dopamine , and substances that reduce the breakdown of dopamine inhibitors) can be very efficacious in relieving motor symptoms. Unpleasant side effects of these preparations are quite common, including swelling caused by fluid accumulation in body tissues, drowsiness, constipation, dizziness, hallucinations, and nausea.

    Myth : Deep Brain Stimulation Is Experimental Therapy


    Fact: Deep brain stimulation, or DBS, is a procedure in which doctors place electrodes in the brain at the point when medications are less effective in masking motor symptoms, such as tremor, stiffness and slowness of movement.

    While it may sound frightening and futuristic, its been around and successfully used for decades. DBS works very similarly to a pacemaker, except the wire is in the brain, not in the heart. Its been a standard procedure for the past two decades.

    You May Like: Sleep And Parkinson’s

    The Role Of Dementia And Age

    Dementia also plays an important role in survival with Parkinson’s. By the end of the above study, nearly 70% of the population with Parkinson’s had been diagnosed with dementia, and those with dementia had a lower survival rate as compared to those without.

    This means that those with dementia were more likely to die during the six-year period than those without dementia. In addition, scientific studies have shown that increasing age is linked to an increased risk of death.

    It’s important to remember that how a person’s Parkinson’s disease manifests and progresses is variable, and a person’s neurologist cannot accurately predict individual life expectancy.

    There are simply no key signs or symptoms that allow a doctor to perfectly predict longevity. An older age and the presence of dementia are simply associated with an increased risk of dying.

    Surgery And Deep Brain Stimulation

    Deep brain stimulation is a treatment for Parkinsonâs disease that uses an implantable pacemaker-like device to deliver electrical pulses to parts of the brain involved in movement. The DBS system consists of leads precisely inserted into a specific brain target, the neurostimulator implanted in the chest, and extension wires that connect the leads to the neurostimulator. Though implantation of the system requires a neurosurgical procedure, the treatment itself consists of long-term electrical stimulation. Advantages of DBS include its ability to reduce the high doses of medications , its adjustability , and its reversibility DBS was approved by the Food and Drug Administration as a treatment for PD in 2002 and according to Medtronic , more than 80,000 patients have undergone DBS surgery worldwide.

    Typical candidates are those who have motor fluctuations or periods of âoffâ time with troublesome symptoms alternating with periods of âonâ time with good symptom control, and also with possible periods of excessive movement .

    Not all patients with Parkinsonâs disease are good candidates for treatment with DBS. Approximately 10â20% of patients considered for possible treatment with DBS include those:

    Don’t Miss: How Is The Family Of A Person With Parkinson’s Affected

    Speech And Facial Expressions

    Speech can already become quieter and more slurred in the early stages of Parkinson’s. It can also sometimes be difficult to show your feelings using facial expressions. Some people then start to avoid talking to others, even on the phone. But that usually makes them even more unhappy. People who deal with this problem openly and confidently may realize that others respond in a helpful way, and that can be encouraging.

    Of course, not everyone is patient enough to listen to someone who talks very quietly and slowly. A fixed facial expression or tense posture can also be unsettling and lead to misunderstandings. But people can get used to it. That’s why you should be brave enough to talk to them. Speech therapy might help you to speak more clearly and precisely and to develop more confidence. This type of therapy also improves the ability of the facial muscles to move, as well as your facial expressions and breathing.

    What Is Parkinsons Disease

    Living with Parkinson’s disease

    Parkinsons disease is a progressive brain disorder that affects mobility and mental ability. If you or a loved one has been diagnosed with Parkinsons, you may be wondering about life expectancy.

    According to some research, on average, people with Parkinsons can expect to live almost as long as those who dont have the condition.

    Recommended Reading: Parkinson’s Personality Changes

    Is Parkinsons Disease Inherited

    Scientists have discovered gene mutations that are associated with Parkinsons disease.

    There is some belief that some cases of early-onset Parkinsons disease disease starting before age 50 may be inherited. Scientists identified a gene mutation in people with Parkinsons disease whose brains contain Lewy bodies, which are clumps of the protein alpha-synuclein. Scientists are trying to understand the function of this protein and its relationship to genetic mutations that are sometimes seen in Parkinsons disease and in people with a type of dementia called Lewy body dementia.

    Several other gene mutations have been found to play a role in Parkinsons disease. Mutations in these genes cause abnormal cell functioning, which affects the nerve cells ability to release dopamine and causes nerve cell death. Researchers are still trying to discover what causes these genes to mutate in order to understand how gene mutations influence the development of Parkinsons disease.

    Scientists think that about 10% to 15% of persons with Parkinsons disease may have a genetic mutation that predisposes them to development of the disease. There are also environmental factors involved that are not fully understood.

    Movement Disorders Similar To Parkinsons

    Conditions causing excess movement or decreased movement that are sometimes associated with Parkinson’s disease-like symptoms include:

    What Movement Disorder Could I Have?

    When making a Parkinson’s diagnosis, your doctor will review your medical history and symptoms, perform a careful neurological exam, and, if necessary, carry out further tests to rule out other movement disorders.

    Your symptoms may be caused by a movement disorder other than Parkinson’s disease if:

    • You display Parkinson’s disease symptoms and features that are characteristic of an additional movement disorder.
    • The results of a brain imaging study or laboratory test, such as a blood test, confirm the presence of another movement disorder.
    • Your symptoms do not respond to Parkinson’s disease medication.

    Because movement disorders are not all treated the same way, it is important to get a proper diagnosis as early as possible so you can formulate the right treatment plan with your doctor.

    Recommended Reading: Is Parkinson’s Disease Fatal

    A Day In The Life Of A Parkinsons Disease Sufferer

    A Typical Morning

    What is Parkinsons disease?

    Parkinsons disease is largely thought of as a condition of affecting motor control. James Beck, PhD, vice president of scientific affairs for the Parkinsons Disease Foundation , says that while every case is different, the four cardinal signs of the disease are tremor, muscle rigidity, bradykinesia or akinesia , and problems with walking and balance. These symptoms occur as cells in a part of the brain known as the substantia nigra begin to die off, for reasons that remain unknown. These cells produce an important chemical neurotransmitter known as dopamine. Without dopamine, the brain is unable to control muscle movement. But dopamine is so much more than that. You may have heard it referred to as the happiness neurotransmitter, so its no surprise that two of the non-motor symptoms of Parkinsons disease are depression and apathy. Add to that pain from rigid muscles, blood pressure instability, drooling, sweating, constipation, impaired cognition, and absolutely crushing fatigue, and youve got yourself a disease that affects just about every facet of life. A person with mid-stage Parkinsons disease walking around may look like they are drunk, says Dr. Beck. They commonly have slurred speech, and swallowing is another problem, which can contribute to drooling. This constellation of motor effects looks like drunkenness, but their minds are clear.

    Treatment for Parkinsons

    Getting Help

    Related Diagnosis: Lewy Body Dementia


    Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.

    In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.

    This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.

    Don’t Miss: What Color Represents Parkinson’s Disease

    Parkinson’s Disease Diet And Nutrition

    Maintaining Your Weight With Parkinson’s Disease

    Malnutrition and weight maintenance is often an issue for people with Parkinson’s disease. Here are some tips to help you maintain a healthy weight.

    • Weigh yourself once or twice a week, unless your doctor recommends weighing yourself often. If you are taking diuretics or steroids, such as prednisone, you should weigh yourself daily.
    • If you have an unexplained weight gain or loss , contact your doctor. He or she may want to modify your food or fluid intake to help manage your condition.
    • Avoid low-fat or low-calorie products. . Use whole milk, whole milk cheese, and yogurt.

    What Is It Like To Have Parkinsons Disease

    You have Parkinsons disease . If someone were to observe you, what would they see that is attributed to having Parkinsons disease? What wouldnt they see that is attributed to having this disease?

    I have culminated the answers from a very un-scientific study, the questions above posed to over 1,500 people with Parkinsons disease.;

    This is not my story. This is the story of all those who live with Parkinsons disease, in order to show what it can be like for those who daily live with this debilitating disease.

    Don’t Miss: What Is The Life Expectancy Of Someone With Parkinson’s Disease

    Myth : Aside From Medication There Isnt Much You Can Do

    Fact: This it is what it is; theres nothing I can do to help myself myth is counterproductive. There is a lot you can do chiefly, keeping as active as you can. A recent study found that patients with Parkinsons who took part in weekly, hourlong exercise sessions were able to do more in their daily lives than those who did not.

    Is Parkinsons Disease Fatal

    April is Parkinson’s Disease Awareness Month – learn more

    It is important to understand that PD is not considered a fatal condition. As is the case with Alzheimers disease and other forms of dementia, complications and a patients comorbid conditions are more life-threatening than PD itself. For example, because Parkinsons affects movement, balance and coordination, a patients risk of falling increases as the disease progresses. Falls are notoriously dangerous and a leading cause of injury and death among older adults. Difficulty swallowing, known as dysphagia, is another complication that can develop at any point throughout ones journey with PD, and this can cause aspiration pneumoniaanother leading cause of death in patients.

    Read:Dysphagia: How to Help a Loved One Eat and Drink Safely

    Because a persons overall health is an important factor in how Parkinsons progresses, lifestyle choices are vitally important for prolonging both functionality and longevity. Regular exercise, a healthy diet, careful management of preexisting conditions and prevention of new medical issues is crucial.

    It is important to work with a well-rounded medical team to understand PD symptoms, explore treatment options and devise a personalized care plan for improving ones overall health, maintaining a high quality of life, and preventing complications.

    Also Check: Parkinsonian Syndrome Life Expectancy

    The Impact Of Living With Parkinsons Disease: Balancing Within A Web Of Needs And Demands

    Catharina Sjödahl Hammarlund

    1The PRO-CARE Group, Faculty of Health Science, Kristianstad University, Kristianstad, Sweden

    2Department of Health Sciences, Lund University, Lund, Sweden

    3The Research Platform for Collaboration for Health, Faculty of Health Science, Kristianstad University, Kristianstad, Sweden


    1. Introduction

    Parkinsons disease is a progressive, neurological disease involving motor and nonmotor symptoms . Its symptom profile and progression differ between individuals. The core pathology believed to cause the main motor symptoms is a striatal dopamine deficit due to progressive loss of nigrostriatal dopaminergic neurons . Symptomatic dopaminergic therapy is initially successful, but a fluctuating drug response and dyskinesias often develop after some years. With the occurrence and progression of both motor and nonmotor symptoms, often in complex and fluctuating patterns , the disease is typically perceived as unpredictable and difficult to control .

    2. Materials and Methods

    2.1. Participants and Recruitment
    2.2. Data Collection
    2.3. Data Analysis

    3. Results

    The impact of living with PD can be understood as Changed prerequisites for managing day-to-day demands, Loss of identity and dignity, Compromised social participation, and The use of practical and psychological strategies with internal variations seen as subcategories .

    3.1. Changed Prerequisites for Managing Day-to-Day Demands
    3.2. Loss of Identity and Dignity

    4. Discussion

    Assembling A Capable Health Care Team

    Developing and maintaining relationships with experts in the field of Parkinsons disease can make life easier and more enjoyable. Your team members and the role or roles they assume are likely to change as your symptoms change and as the disease progresses. Some will go the distance, staying with you throughout your life with Parkinsons. Others will be sprinters, accompanying you as you manage particular symptoms, emotions, or transitions.

    Your team can include:

    • Movement Disorder Specialist
    • Nurse

    Don’t Miss: Parkinson’s Disease Life Span

    Living With Parkinson’s Disease

    Parkinson’s disease progresses over time, often taking years before symptoms appear. Because it develops gradually, most people have many years of productive living after being diagnosed.

    The following are some tips from the National Parkinson Foundation for walking, standing and other day-to-day activities:

    What Makes Pd Hard To Predict

    Parkinsonâs disease: Six early symptoms of the disease ...

    Parkinsonâs comes with two main buckets of possible symptoms. One affects your ability to move and leads to motor issues like tremors and rigid muscles. The other bucket has non-motor symptoms, like pain, loss of smell, and dementia.

    You may not get all the symptoms. And you canât predict how bad theyâll be, or how fast theyâll get worse. One person may have slight tremors but severe dementia. Another might have major tremors but no issues with thinking or memory. And someone else may have severe symptoms all around.

    On top of that, the drugs that treat Parkinsonâs work better for some people than others. All that adds up to a disease thatâs very hard to predict.

    Read Also: Can Dogs Get Parkinson’s

    Medication And Side Effects

    It’s especially important that Parkinson’s medication is taken according to a fixed schedule. That way the drugs should have a stable effect throughout the day. Most people who have Parkinson’s have to take medication every day, but it’s not always easy. Various things can help if you have to take medication on a long-term basis. These include:

    • regularly talking to your doctor about taking your medication,
    • keeping the treatment plan simple,
    • using packaging or containers that make it easier to see if a dose has been missed, and
    • setting up automatic reminders, for instance on your cell phone.

    Regularly taking medication is also easier if you’re well informed about what you’re taking and develop a fixed routine.

    A lot of people with Parkinson’s generally have a positive attitude towards their medication. But they also find that the adverse effects can affect their quality of life. Knowing about the common side effects of the various medications can help you to decide which one to take. It also helps to correctly identify any side effects that occur. It’s important to seek medical advice if you have severe side effects. You could then change the dose or switch to a different medication. Parkinsons treatment with medication has to be regularly adjusted. It can sometimes take a while for the drugs to have the desired effect and the side effects to become tolerable.


    Popular Articles