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Next Steps And Considerations After Learning You May Have This Movement Disorder
Parkinson’s is a disease of the nervous system that affects movement. Tremor, stiffness, balance issues and slow movement are some of the common symptoms. More than 1 million people in the United States are currently living with Parkinson’s disease, and about 60,000 Americans are newly diagnosed each year, according to the Parkinson’s Foundation.
“A lot of times I’m asked if Parkinson’s is becoming more common,” said David Charles, M.D., vice-chair of neurology and neurologist in the Movement Disorders Clinic at Vanderbilt University Medical Center. “But the prevalence of Parkinson’s increases with age. And so that leads to the illusion that Parkinson’s disease is happening more often. But actually what’s happening is our population is aging.”
If you or a loved one is among the newly diagnosed, you may be wondering what to expect or what steps to take next. We asked Charles to offer guidance and insight.
Mayo Clinic Q And A: Rate Of Progression Of Parkinsons Disease Hard To Predict
DEAR MAYO CLINIC: My father is 64 and was diagnosed with Parkinson’s last year. So far his symptoms are very mild, but I’m wondering what the typical progression of the disease is like. I have read that deep brain stimulation is sometimes recommended. When is this type of treatment usually considered? Is it safe?
ANSWER: The symptoms of Parkinson’s disease, or PD, tend to begin very gradually and then become progressively more severe. The rate of progression is hard to predict and is different from one person to another. Treatment for PD includes a variety of options, such as exercise, medication and surgery. Deep brain stimulation is one surgical possibility for treating PD, but it’s usually only considered in advanced cases when other treatments don’t effectively control symptoms.
Parkinson’s disease is a syndrome which typically has no known cause. The diagnosis is based on symptoms. Neurologists who specialize in movement disorders typically have the most experience with PD diagnosis and treatment. There are many symptoms of parkinsonism. The most common include excessive slowness and lack of movement, as well as shaking or tremor.
As in your father’s situation, symptoms are often mild at the outset. How quickly they get worse varies substantially, perhaps because there may be multiple underlying causes of the disease. In most cases, symptoms change slowly, with substantive progression taking place over the space of many months or years.
Sidebar: Morris K Udall Centers Of Excellence For Parkinson’s Disease Research
The Morris K. Udall Parkinson’s Disease Research Act of 1997 authorized the NIH to greatly accelerate and expand PD research efforts by launching the NINDS Udall Centers of Excellence, a network of research centers that provide a collaborative, interdisciplinary framework for PD research. Udall Center investigators, along with many other researchers funded by the NIH, have made substantial progress in understanding PD, including identifying disease-associated genes; investigating the neurobiological mechanisms that contribute to PD, developing and improving PD research models, and discovering and testing potential therapeutic targets for developing novel treatment strategies.
The Udall Centers continue to conduct critical basic, translational, and clinical research on PD including: 1) identifying and characterizing candidate and disease-associated genes, 2) examining neurobiological mechanisms underlying the disease, and 3) developing and testing potential therapies. As part of the program, Udall Center investigators work with local communities of patients and caregivers to identify the challenges of living with PD and to translate scientific discoveries into patient care. The Centers also train the next generation of physicians and scientists who will advance our knowledge of and treatments for PD. See the full list of Udall Centers.
How Can I Support Someone With Parkinson’s At The Advanced Or Palliative Stage
In the advanced stages of Parkinson’s, your patient’s care needs may be more complex and require careful planning along with the patient, their family and other health and social care professionals involved.
Palliative care should be holistic, considering the ‘whole person’ to support the personal, social, psychological and spiritual needs of your patient and their family. It should give your patient some control and choice over areas such as treatment options and where they will be cared for, as well as providing advice and support to all the people involved in their care.
Palliative care in Parkinson’s may be supported by a number of professionals, including a Parkinson’s nurse specialist, local hospice or specialist palliative care team, physiotherapist, occupational therapist, speech and language therapist or dietitian. Many people with Parkinson’s also find complementary therapies beneficial.
It is important that you find out whether the person has a care plan in place regarding their preferences for how the issues surrounding advanced Parkinson’s should be managed. This could include legal documentation such as a Lasting Power of Attorney and an advance care plan. Advance care plans include information on what the person’s wishes and preferences are for their care in the future. They may include decisions on any treatments the person doesn’t want to have in the future – this is called an Advance Directive, Advance Decision to Refuse Treatment or Living Will.
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 Parkinson’s 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 Can Parkinson’s Affect Someone At The Advanced Or Palliative Stage
Parkinson’s progresses in stages: diagnosis, maintenance, advanced and palliative. Professionals should have talk to people with Parkinson’s about advance care planning in the earlier stages of the disease. This can allow them to express their wishes and preferences for their care in the later stages of the disease and make plans for the future.
Although the condition progresses differently and at a different speed for each person, the advanced stage can potentially cover a long period of time.
Problems that affect someone with advanced Parkinson’s may include:
- medicines being less effective at managing symptoms than before
- having to take lots of medicines to manage symptoms and side effects
- more ‘off’ periods – when the effects of medication are reduced, and people experience movement fluctuations and involuntary movements
- increased mobility problems and falls
- swallowing difficulties
- less control of their Parkinson’s symptoms, which become less predictable
Some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection, such as pneumonia. People with Parkinson’s most often die because of an infection or another condition, usually caused by Parkinson’s.
What Is The Prognosis And Life Expectancy For Parkinson’s Disease
The severity of Parkinson’s disease symptoms and signs vary greatly from person to peson, and it is not possible to predict how quickly the disease will progress. Parkinson’s disease itself is not a fatal disease, and the average life expectancy is similar to that of people without the disease. Secondary complications, such as pneumonia, falling-related injuries, and choking can lead to death. Many treatment options can reduce some of the symptoms and prolong the quality of life.
Why It Is Hard To Detect The Progression Of Parkinsons Disease
As we stated above that Parkinson’s disease is not basic, it becomes difficult to detect it in its early stage due to 2 symptoms – it affects motor issues such as the rigid muscles and tremors, and the other is the development of non-motor symptoms such as dementia, pain, and loss of smell.
Although one cannot see that a person suffering from Parkinson’s disease will show all the symptoms, you cannot even tell or predict which symptoms will be present and their severity. For instance, one patient may show severe dementia with slight tremors. Another patient displays a critical condition of tremors but does not have any problem related to memory or thinking. In another case, the patient can show a severe state of all the symptoms. Therefore, it is difficult to predict the progression of the condition.
In addition to this, the medicines that help in treating Parkinson’s disease also make it difficult to predict the results because a few patients show positive results while others do not show any improvement.
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 Parkinson’s 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 didn’t exercise or didn’t 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 Parkinson’s, 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.
Improve the quality of your sleep.
A Second Opinion After Your Parkinsons Disease Diagnosis
Getting a second opinion after an initial diagnosis can be helpful. “The first time someone’s told they have Parkinson’s can be very upsetting — and of course, understandably so,” Charles said. “Seeking a second opinion is always entirely reasonable.” Parkinson’s is a slowly progressive disease, he added, so there’s no harm in taking additional time to get a second opinion.
How Long Does It Take For Parkinsons Disease To Progress
It is quite common for any individual suffering from Parkinson’s disease to wonder about the unfolding of the condition. If you belong to the group that in search for the answers related to the progression of Parkinson’s disease, then you will try to learn about the symptoms that you can acquire with the condition, when they start, and the changes the disease brings in the body.
The questions are basic, but Parkinson’s disease is not. Like other illnesses, Parkinson’s disease does not have a specific path of progression. Due to this, it is difficult to state or pin down the exact time or the path of the progression.
What To Expect In The Late Stages Of Parkinsons Disease
The late stages of PD are medically classified as stage four and stage five by the Hoehn and Yahr scale:
- Stage Four of Parkinson’s Disease – In stage four, PD has progressed to a severely disabling disease. Patients with stage four PD may be able to walk and stand unassisted, but they are noticeably incapacitated. Many use a walker to help them. At this stage, the patient is unable to live an independent life and needs assistance with some activities of daily living. The necessity for help with daily living defines this stage. If the patient is still able to live alone, it is still defined as Stage Three.
- Stage Five of Parkinson’s Disease – Stage five is the most advanced and is characterized by an inability to arise from a chair or get out of bed without help. They may have a tendency to fall when standing or turning, and they may freeze or stumble when walking. Around-the-clock assistance is required at this stage to reduce the risk of falling and help the patient with all daily activities. At stage five, the patient may also experience hallucinations or delusions.1,2
Enjoying A High Quality Of Life With Parkinsons Disease
You also can adapt lifestyle habits to help you stay active and maximize your quality of life. Try these approaches:
- Eat a heart-healthy diet. Although diet does not directly improve or otherwise affect PD symptoms, by eating for heart health you can avoid developing additional health conditions like hypertension that might negatively affect your quality of life. Plus, eating well confers a sense of emotional well-being. Aim to eat plenty of fresh vegetables and fruits, lean proteins, whole grains, and healthy fats like olive oil.
- Focus on your emotional health. Being diagnosed with a progressive medical condition like PD can put you on an emotional rollercoaster. Seek out professional counseling and learn how to cope with your feelings in productive ways, such as meditation, yoga, music or aromatherapy—any activity that reduces stress.
- Make love. People with PD can still enjoy a healthy sex life, and sexual activity can relieve stress and improve mood.
- Stay active. To the extent possible, engage in regular exercise to boost mood and improve your overall health.
- Take care of your teeth. PD can affect facial muscles, making it difficult to clean your teeth adequately. Dental problems like loose teeth or gum disease, in turn, can make you more susceptible to infection. See a dentist regularly for oral care.
What Are The Surgical Treatments For Parkinsons Disease
Most patients with Parkinson’s disease can maintain a good quality of life with medications. However, as the disease worsens, medications may no longer be effective in some patients. In these patients, the effectiveness of medications becomes unpredictable – reducing symptoms during “on” periods and no longer controlling symptoms during “off” periods, which usually occur when the medication is wearing off and just before the next dose is to be taken. Sometimes these variations can be managed with changes in medications. However, sometimes they can’t. Based on the type and severity of your symptoms, the failure of adjustments in your medications, the decline in your quality of life and your overall health, your doctor may discuss some of the available surgical options.
What Is The Outlook For Persons With Parkinsons Disease
Although there is no cure or absolute evidence of ways to prevent Parkinson’s disease, scientists are working hard to learn more about the disease and find innovative ways to better manage it, prevent it from progressing and ultimately curing it.
Currently, you and your healthcare team’s efforts are focused on medical management of your symptoms along with general health and lifestyle improvement recommendations . By identifying individual symptoms and adjusting the course of action based on changes in symptoms, most people with Parkinson’s disease can live fulfilling lives.
The future is hopeful. Some of the research underway includes:
- Using stem cells to produce new neurons, which would produce dopamine.
- Producing a dopamine-producing enzyme that is delivered to a gene in the brain that controls movement.
- Using a naturally occurring human protein – glial cell-line derived neurotrophic factor, GDNF – to protect dopamine-releasing nerve cells.
Many other investigations are underway too. Much has been learned, much progress has been made and additional discoveries are likely to come.
What Medications Are Used To Treat Parkinsons Disease
Medications are the main treatment method for patients with Parkinson’s 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 Parkinson’s 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 Parkinson’s disease.
Levodopa: Levodopa is a main treatment for the slowness of movement, tremor, and stiffness symptoms of Parkinson’s disease. Nerve cells use levodopa to make dopamine, which replenishes the low amount found in the brain of persons with Parkinson’s 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 .
Caregiving In The Late Stages Of Parkinsons Disease
In late-stage PD, patients have significant mobility challenges. Caregivers likely need to provide more hands-on assistance to help them get around the house. It’s important that caregivers learn safe and effective methods to provide help without injuring themselves. Physical therapists can be a great resource to assess an individual situation and teach effective ways of giving assistance.3
Freezing, a sudden but temporary inability to move, can become more common in late-stage PD. Freezing often happens when initiating movement or navigating around obstacles, and freezing episodes contribute to falls. Caregivers can help their loved one overcome freezing by providing a visual cue to step over, like a laser pointer, or using music or rhythm for the person with PD to walk to.3
Late stage PD can make daily activities, such as getting dressed, much more challenging. Caregivers can make getting dressed easier by ensuring adequate time to account for slow movement, choosing a time when medications are “on” and working well, and assembling all necessary items close to the person. Allowing the person with PD to do as much as they can gives them a sense of participation in the process.3
The Right Care Provider To Treat Parkinsons Disease
You can also take your time finding the right neurologist to treat your Parkinson’s and help guide you on your journey. Charles said it’s best to find someone close by whom you can see easily when you need to.
“For people who are able to receive their care at Vanderbilt,” he added, “we have a large division of movement disorders, with faculty specialized in the care of people with Parkinson’s disease. And not only is it a large division, it’s also one of the most highly respected in the nation.”
What Are The Different Stages Of Parkinsons Disease
Each person with Parkinson’s disease experiences symptoms in in their own unique way. Not everyone experiences all symptoms of Parkinson’s disease. You may not experience symptoms in the same order as others. Some people may have mild symptoms; others may have intense symptoms. How quickly symptoms worsen also varies from individual to individual and is difficult to impossible to predict at the outset.
In general, the disease progresses from early stage to mid-stage to mid-late-stage to advanced stage. This is what typically occurs during each of these stages:
Early symptoms of Parkinson’s disease are usually mild and typically occur slowly and do not interfere with daily activities. Sometimes early symptoms are not easy to detect or you may think early symptoms are simply normal signs of aging. You may have fatigue or a general sense of uneasiness. You may feel a slight tremor or have difficulty standing.
Often, a family member or friend notices some of the subtle signs before you do. They may notice things like body stiffness or lack of normal movement slow or small handwriting, lack of expression in your face, or difficulty getting out of a chair.
Standing and walking are becoming more difficult and may require assistance with a walker. You may need full time help to continue to live at home.
How Quickly Will I See Results Or Feel The Effects
Quality of life improvements take time. These changes can be exciting and feel great in the early Phases of the Programs, however, consistency in care is imperative for meaningful long-term gains.
The rate at which nerve tissue improves and recovers is relatively slow and the long-term benefits of DBR Programslock-in as inflammation, circulation and pain processes normalize.
The following best describes average response to our DBR Programs:
What To Expect As Parkinson’s Disease Progresses
What to Expect as Parkinson’s Disease Progresses
Parkinson’s disease is a chronic and incurable, yet non-fatal, neurodegenerative disorder. While the exact cause is unknown, Parkinson’s develops as dopamine-producing nerve cells in the brain sustain damage. The result is symptoms such as tremors, stiff movements, and loss of balance. The symptoms tend to worsen as Parkinson’s progresses. While there are five stages of Parkinson’s, not everyone will experience the same symptoms in the same order or to the same degree of severity.
The first stage involves mild symptoms that only affect one side of the body. Patients are still able to go about their daily routine without interference. They may experience slight tremors, and changes in posture, facial expressions, and walking.
Patients enter the second stage when the symptoms begin to worsen. The tremors and rigidity now affect both sides of the body. Others may notice that the patient has poor posture and difficulty walking. While most patients are still able to care for themselves, it becomes more troublesome to complete daily tasks.
During the third stage, patients often fall as the loss of balance and slowed movements become increasingly severe. Some patients are still able to retain full independence. However, they will likely have significant difficulties with certain tasks, including eating and dressing.
Sidebar: Ninds Steps Up Pursuit Of Pd Biomarkers
In 2012, the NINDS dramatically accelerated efforts to identify biomarkers by establishing the Parkinson’s Disease Biomarkers Program . This unprecedented program unites a range of stakeholders from basic and clinical researchers to healthcare professionals, the NINDS staff, information technology experts, and people living with PD and their families.
PDBP supports research and builds resources aimed at accelerating the discovery of biomarkers to ultimately slow the progression of PD. For example, the program has established a repository of biological specimens and a Data Management Resource system maintained by the NIH Center for Information Technology. The DMR allows researchers to access clinical, imaging, genetic, and biologic data, while a complementary PDBP-supported project develops statistical tools to analyze vast quantities of data so that patterns can be identified across these diverse sources of information.
What Are The Complications Of Parkinson Disease
Parkinson disease causes physical symptoms at first. Problems with cognitive function, including forgetfulness and trouble with concentration, may arise later. As the disease gets worse with time, many people develop dementia. This can cause profound memory loss and makes it hard to maintain relationships.
Parkinson disease dementia can cause problems with:
- Speaking and communicating with others
- Problem solving
- Paying attention
If you have Parkinson disease and dementia, in time, you likely won’t be able to live by yourself. Dementia affects your ability to care of yourself, even if you can still physically do daily tasks.
Experts don’t understand how or why dementia often occurs with Parkinson disease. It’s clear, though, that dementia and problems with cognitive function are linked to changes in the brain that cause problems with movement. As with Parkinson disease, dementia occurs when nerve cells degenerate, leading to chemical changes in the brain. Parkinson disease dementia may be treated with medicines also used to treat Alzheimer’s disease, another type of dementia.
Parkinson’s Disease Symptoms: Life Expectancy
Even though Parkinson’s disease is a serious, progressive condition, it is not considered a fatal illness. People who have Parkinson’s disease usually have the same average life expectancy as people without the disease.
But when the disease is in its advanced stages, Parkinson’s symptoms can lead to life-threatening complications, including:
- Falls that lead to fractured bones
Thinking about the progression of Parkinson’s disease can be frightening. But proper treatments can help you live a full, productive life for years to come. And researchers hope to one day find ways to halt the progression of Parkinson’s and restore lost functioning.
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.
Stages And Progression Of Lewy Body Dementia Claudia Chaves, MD
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology. She is an associate professor of neurology at Tufts Medical School and medical director of the Lahey Clinic Multiple Sclerosis Center in Lexington, Massachusetts.
If you or someone you know has recently been diagnosed with Lewy body dementia, you might be wondering what to expect as the disease progresses. Is there a fairly typical progression like Alzheimer’s disease where it begins in early stages that are fairly uniform, then moves to middle stages and then to late stages? In Lewy body dementia, the answer is a bit more complicated.
Parkinsons Disease Is A Progressive Disorder
Parkinson’s Disease is a slowly progressive neurodegenerative disorder that primarily affects movement and, in some cases, cognition. Individuals with PD may have a slightly shorter life span compared to healthy individuals of the same age group. According to the Michael J. Fox Foundation for Parkinson’s Research, patients usually begin developing Parkinson’s symptoms around age 60. Many people with PD live between 10 and 20 years after being diagnosed. However, a patient’s age and general health status factor into the accuracy of this estimate.
While there is no cure for Parkinson’s disease, many patients are only mildly affected and need no treatment for several years after their initial diagnosis. However, PD is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time. This progression occurs more quickly in some people than in others.
Pharmaceutical and surgical interventions can help manage some of the symptoms, like bradykinesia , rigidity or tremor , but not much can be done to slow the overall progression of the disease. Over time, shaking, which affects most PD patients, may begin to interfere with daily activities and one’s quality of life.
Caregiving For People Living With Parkinsons
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following : Get prepared, Take care of yourself, Get help , Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.
Preparing for caregiving starts with education. Reading this fact sheet is a good start. More resources are available to you in theResources section of this fact sheet. Early Parkinsonâ€™s disease usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.