How Can Hospice Help Your Loved One In The Final Stages Of Parkinsons Disease
Hospice care is an extra layer of support to help you care for your loved one with end-stage Parkinsons disease. It is a special kind of care that provides comfort, support, and dignity at the end of life.
The comprehensive program focuses on physical, emotional, and spiritual quality of life through the help of a team of experts. The team includes a board-certified physician, nurse, social worker, certified home health aide , spiritual support counselor, and volunteer.
The nurse will explain the prognosis and what to expect in the upcoming days or weeks. They will also monitor pain and other symptoms. The CHHA helps with personal care needs like bathing and changing bed linens. The social worker helps address social, emotional and practical challenges including complex and inter-related needs. The spiritual support counselor helps explore spiritual concerns.
Most importantly, the hospice team will be there for you during this difficult time, bringing you peace of mind. The team is on call 24 hours a day even at 2:00 am.
Hospice is about making your final months and weeks as good as possible. This means focusing on what really matters to you.
How A Diagnosis Is Made
The bedside examination by a neurologist remains the first and most important diagnostic tool for Parkinsons disease . Researchers are working to develop a standard biological marker such as a blood test or an imaging scan that is sensitive and specific for Parkinsons disease.
A neurologist will make the diagnosis based on:
- A detailed history of symptoms, medical problems, current and past medications. Certain medical conditions, as well as some medications, can cause symptoms similar to Parkinsons.
- A detailed neurological examination during which a neurologist will ask you to perform tasks to assess the agility of arms and legs, muscle tone, gait and balance, to see if:
- Expression and speech are animated.
- Tremor can be observed in your extremities at rest or in action.
- There is stiffness in extremities or neck.
- You can maintain your balance and examine your posture.
What Lifestyle Changes Can I Make To Ease Parkinsons Symptoms
Exercise: Exercise helps improve muscle strength, balance, coordination, flexibility, and tremor. It is also strongly believed to improve memory, thinking and reduce the risk of falls and decrease anxiety and depression. One study in persons with Parkinsons disease showed that 2.5 hours of exercise per week resulted in improved ability to move and a slower decline in quality of life compared to those who didnt exercise or didnt start until later in the course of their disease. Some exercises to consider include strengthening or resistance training, stretching exercises or aerobics . All types of exercise are helpful.
Eat a healthy, balanced diet: This is not only good for your general health but can ease some of the non-movement related symptoms of Parkinsons, such as constipation. Eating foods high in fiber in particular can relieve constipation. The Mediterranean diet is one example of a healthy diet.
Preventing falls and maintaining balance: Falls are a frequent complication of Parkinson’s. While you can do many things to reduce your risk of falling, the two most important are: 1) to work with your doctor to ensure that your treatments whether medicines or deep brain stimulation are optimal and 2) to consult with a physical therapist who can assess your walking and balance. The physical therapist is the expert when it comes to recommending assistive devices or exercise to improve safety and preventing falls.
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What Are The Symptoms Of Parkinson’s Disease
The main symptoms of Parkinson’s disease are:
- tremor or shaking, often when resting or tired. It usually begins in one arm or hand
- muscle rigidity or stiffness, which can limit movement and may be painful
- slowing of movement, which may lead to periods of freezing and small shuffling steps
- stooped posture and balance problems
The symptoms of Parkinson’s disease vary from person to person as well as over time. Some people also experience:
- loss of unconscious movements, such as blinking and smiling
- difficulties with handwriting
- drop in blood pressure leading to dizziness
- difficulty swallowing
Many of the symptoms of Parkinson’s disease could be caused by other conditions. For example, stooped posture could be caused by osteoporosis. But if you are worried by your symptoms, it is a good idea to see your doctor.
What Is Parkinsons 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.
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The Importance Of Early Diagnosis
Early detection and diagnosis is important because the treatments for PD are more effective in the early stages of the disease. In addition, physical therapy and exercise, which greatly improve symptoms and delay progression of the disease, are much easier to perform in the early stages.
Current diagnosis is made through the presence of motor symptoms however, researchers have found that by the time motor symptoms occur, over 60% of all dopamine neurons in the basal ganglia of the brain have been damaged. Non-motor symptoms become apparent in people with PD long before motor symptoms, including sleep disturbances and loss of the sense of smell.3
Active areas of research include looking for markers in the blood, urine, or cerebral spinal fluid that reliably detect PD, called biomarkers. In addition, brain imaging tests that have high sensitivity for detecting PD are also being actively researched.4
Potential Causes Of Parkinsons Disease
The causes of Parkinsons disease are still unknown, although there is some evidence for the role of genetics, environmental factors, or a combination of both. It is also possible that there may be more than one cause of the disease. Scientists generally believe that both genetics and environment interact to cause Parkinsons disease in most people who have it.
Currently, there is an enormous amount of research directed at producing more answers about what causes Parkinsons disease and how it might be prevented or cured. When physicians diagnose Parkinsons, they often describe it as idiopathic . This simply means that the cause of the disease is not known.
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Complementary And Alternative Therapies
Some people with Parkinson’s disease find complementary therapies help them feel better. Many complementary treatments and therapies claim to ease the symptoms of Parkinson’s disease.
However, there’s no clinical evidence they’re effective in controlling the symptoms of Parkinson’s disease.
Most people think complementary treatments have no harmful effects. However, some can be harmful and they shouldn’t be used instead of the medicines prescribed by your doctor.
Some types of herbal remedies, such as St John’s wort, can interact unpredictably if taken with some types of medication used to treat Parkinson’s disease.
If you’re considering using an alternative treatment along with your prescribed medicines, check with your care team first.
Give Yourself Time To Adjust
Over time, youll likely become an expert in Parkinsons disease but right now, youre a newbie. Give yourself time for the diagnosis and all it might mean to sink in. Then, get educated: Ask your doctor for information you can take home and read, find other people with Parkinsons in your community or online to talk to, and browse sites like the National Parkinson Foundation and the Michael J. Fox Foundation for Parkinson’s Research.
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Contact Our Information And Referral Helpline
The Parkinson Canada Information and Referral Helpline is a toll-free Canada-wide number for people living with Parkinsons, their caregivers and health care professionals. We provide free and confidential non-medical information and referral services. When you have questions or need assistance, our information and referral staff help connect you with resources and community programs and services that can help you. We provide help by phone or email, Monday to Friday, 9:00 a.m. 5:00 p.m. ET.
Ological Limitations Of The Diagnostic Studies
When interpreting the literature about diagnosis, the following methodological issues should be considered:
- lack of long-term prospective clinical and pathological as a reference standard
- lack of operational definitions such as defining specialists or clinical diagnostic criteria
- unclear whether investigators were blinded to initial diagnosis
- sample sizes necessarily limited by the number of cases available with neuropathological outcomes
- trial age groups are often young as studies were performed by neurologists who see a younger population of people with PD
- most studies included people with established disease lasting some years
- varying geographical locations
- some studies are in specialised units and may not reflect the diagnostic accuracy of other units in the UK
- exclusion of some studies using magnetic resonance volumetry and magnetic resonance spectroscopy as they lacked appropriate population, intervention and outcome criteria
- lack of statistical details of diagnostic accuracy such as sensitivity, specificity and positive predictive values
- lack of economic evaluations of SPECT.
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Imaging And Lab Tests
Your doctor may order some imaging tests and laboratory tests. Imaging tests can include computed tomography scans and magnetic resonance imaging scans. Laboratory tests can include blood tests and urine tests.
While these tests and scans will not help diagnose Parkinsons disease, they can help rule out other conditions that have similar symptoms.
Your doctor may also suggest that you get a dopamine transporter scan . This scan requires a single-photon emission computed tomography scanner. It involves an injection of a small amount of a radioactive drug so that your doctor can study the dopamine systems in your brain .
While a DaTscan cannot conclusively prove that you have Parkinsons, it can help confirm your doctors diagnosis and eliminate other conditions.
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.
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If You Live In South Jersey And Have Questions About The Final Stages Of Parkinsons Disease Or Hospice Care For Your Loved One Please Call Samaritan At 229
Samaritan is a member of the National Partnership for Healthcare and Hospice Innovation, a network of not-for-profit hospice and palliative providers across the country. If you know someone outside of our service area who is living with advanced illness and can benefit from hospice or palliative care, please call 1 -GET-NPHI for a referral to a not-for-profit provider in your area.
What Medications Are Used To Treat Parkinsons Disease
Medications are the main treatment method for patients with Parkinsons disease. Your doctor will work closely with you to develop a treatment plan best suited for you based on the severity of your disease at the time of diagnosis, side effects of the drug class and success or failure of symptom control of the medications you try.
Medications combat Parkinsons disease by:
- Helping nerve cells in the brain make dopamine.
- Mimicking the effects of dopamine in the brain.
- Blocking an enzyme that breaks down dopamine in the brain.
- Reducing some specific symptoms of Parkinsons disease.
Levodopa: Levodopa is a main treatment for the slowness of movement, tremor, and stiffness symptoms of Parkinsons disease. Nerve cells use levodopa to make dopamine, which replenishes the low amount found in the brain of persons with Parkinsons disease. Levodopa is usually taken with carbidopa to allow more levodopa to reach the brain and to prevent or reduce the nausea and vomiting, low blood pressure and other side effects of levodopa. Sinemet® is available in an immediate release formula and a long-acting, controlled release formula. Rytary® is a newer version of levodopa/carbidopa that is a longer-acting capsule. The newest addition is Inbrija®, which is inhaled levodopa. It is used by people already taking regular carbidopa/levodopa for when they have off episodes .
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Discuss With Your Physician
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.
How Parkinsons Disease Is Diagnosed
Diagnosing Parkinsons disease can be complicated because there isnt a specific blood test or screening test that can determine whether or not you have it.
Instead, Parkinsons is diagnosed clinically, which means a doctor will examine you, review your symptoms and medical history, and diagnose accordingly.
Parkinsons disease is a neurological condition that can make movement difficult. If your general practitioner thinks you might have Parkinsons, they may refer you to a neurologist who specializes in movement disorders for a diagnosis.
It can be challenging to catch Parkinsons in the early stages because the symptoms may be too mild to notice or meet the diagnostic criteria. Also, early Parkinsons symptoms are often mistaken for typical signs of aging.
The symptoms of Parkinsons disease are also similar to those of other health conditions, which may be misdiagnosed as Parkinsons at first. Your doctor may suggest specific tests and scans to help eliminate other conditions that can mimic the symptoms of Parkinsons disease.
How Do I Prevent Falls From Common Hazards
- Floors: Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its usual place.
- Bathroom: Install grab bars and non-skid tape in the tub or shower. Use non-skid bath mats on the floor or install wall-to-wall carpeting.
- Lighting: Make sure halls, stairways, and entrances are well-lit. Install a night light in your bathroom or hallway and staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
- Kitchen: Install non-skid rubber mats near the sink and stove. Clean spills immediately.
- Stairs: Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it might be helpful to arrange most of your activities on the lower level to reduce the number of times you must climb the stairs.
- Entrances and doorways: Install metal handles on the walls adjacent to the doorknobs of all doors to make it more secure as you travel through the doorway.
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 .
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How Is Parkinson’s Disease Diagnosed
Diagnosis is difficult at every stage of the disease, but particularly in the early stages. No single test can provide a diagnosis. A diagnosis will likely involve physical and neurological examinations, conducted over time to assess changes in reflexes, coordination, muscle strength, and mental function. Your doctor might also see how you respond to medicine.
You may need to have brain imaging tests to rule out other conditions that might be causing your symptoms. Such tests could include MRI and CT scans and possibly some other types of scans. Blood tests may also be done to exclude other illnesses.
Testing For Parkinsons Disease
There is no lab or imaging test that is recommended or definitive for Parkinsons disease. However, in 2011, the U.S. Food and Drug Administration approved an imaging scan called the DaTscan. This technique allows doctors to see detailed pictures of the brains dopamine system.
A DaTscan involves an injection of a small amount of a radioactive drug and a machine called a single-photon emission computed tomography scanner, similar to an MRI.
The drug binds to dopamine transmitters in the brain, showing where in the brain dopaminergic neurons are.
The results of a DaTscan cant show that you have Parkinsons, but they can help your doctor confirm a diagnosis or rule out a Parkinsons mimic.
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