Friday, November 25, 2022

Parkinson’s Disease Education Handout

Who Gets Parkinsons Disease

Mark Burek – Parkinson’s Disease Patient

Risk factors for PD include:

  • Age. The average age of onset is about 70 years, and the incidence rises significantly with advancing age. However, a small percent of people with PD have early-onset disease that begins before the age of 50.
  • Sex. PD affects more men than women.
  • Heredity. People with one or more close relatives who have PD have an increased risk of developing the disease themselves. An estimated 15 to 25 percent of people with PD have a known relative with the disease. Some cases of the disease can be traced to specific genetic mutations.
  • Exposure to pesticides. Studies show an increased risk of PD in people who live in rural areas with increased pesticide use.

Surgery For People With Parkinsons Disease

Deep brain stimulation surgery is an option to treat Parkinsons disease symptoms, but it is not suitable for everyone. There are strict criteria and guidelines on who can be a candidate for surgery, and this is something that only your doctor and you can decide. Surgery may be considered early or late in the progression of Parkinsons. When performing deep-brain stimulation surgery, the surgeon places an electrode in the part of the brain most effected by Parkinsons disease. Electrical impulses are introduced to the brain, which has the effect of normalising the brains electrical activity reducing the symptoms of Parkinsons disease. The electrical impulse is introduced using a pacemaker-like device called a stimulator. Thalamotomy and pallidotomy are operations where the surgeon makes an incision on part of the brain. These surgeries aim to alleviate some forms of tremor or unusual movement, but they are rarely performed now.

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 Parkinsonâs 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.

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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.

How Can People Cope With Parkinson’s Disease

Handout: Parkinson

While PD usually progresses slowly, eventually daily routines may be affectedfrom socializing with friends to earning a living and taking care of a home. These changes can be difficult to accept. Support groups can help people cope with the diseases emotional impact. These groups also can provide valuable information, advice, and experience to help people with PD, their families, and their caregivers deal with a wide range of issues, including locating doctors familiar with the disease and coping with physical limitations. A list of national organizations that can help people locate support groups in their communities appears at the end of this information. Individual or family counseling may also help people find ways to cope with PD.

People with PD may also benefit from being proactive and finding out as much as possible about the disease in order to alleviate fear of the unknown and to take a positive role in maintaining their health. Many people with PD continue to work either full- or part-time, although they may need to adjust their schedule and working environment to accommodate their symptoms.

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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.

What Is The Prognosis

The average life expectancy of a person with PD is generally the same as for people who do not have the disease. Fortunately, there are many treatment options available for people with PD. However, in the late stages, PD may no longer respond to medications and can become associated with serious complications such as choking, pneumonia, and falls.

PD is a slowly progressive disorder. It is not possible to predict what course the disease will take for an individual person.

One commonly used scale neurologists use for describing how the symptoms of PD have progressed in a patient is the Hoehn and Yahr scale.

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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 Is Parkinson’s Disease

Tango therapy in Parkinson’s Disease

Parkinsons disease is movement disorder of the nervous system that worsens over time. As nerve cells in parts of the brain weaken or are damaged or die, people may begin to notice problems with movement, tremor, stiffness in the limbs or the trunk of the body, or impaired balance. As these symptoms become more obvious, people may have difficulty walking, talking, or completing other simple tasks. Not everyone with one or more of these symptoms has PD, as the symptoms appear in other diseases as well.

No cure for PD exists today, but research is ongoing and medications or surgery can often provide substantial improvement with motor symptoms.

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Drug Therapy And Research

If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.

Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.

Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.

Foster A Good Relationship

Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.

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Head/neck Cancer And Surgery Resources

This handout is designed for rehabilitation therapists working with patients who are experiencing radiation fibrosis syndrome after undergoing radiation treatment. The handout describes the physiological changes that result in this condition and provides specific information about how radiation fibrosis syndrome can affect the swallow muscles following radiation treatment for head/neck cancer. The handout encourages those seeking radiation treatment services to seek the services of a speech-language pathologist to begin dysphagia therapy before, during, and after radiation treatment, as research has shown that this reduces the risk of chronic dysphagia .

Recent research into the effects of dysphagia therapy for patients undergoing head and neck cancer treatment have provided new insights into the importance of proactive swallowing therapy.This handout is designed for Speech-Language Pathologist working with people who are on relatively long-term NPO status while recovering from other health impairments. The handout describes recent research outlining benefits of proactive swallowing therapy to prevent dysphagia and describes the basic anatomy/physiology of the swallow as well as the risk of aspiration and aspiration pneumonia.

Resources For Staff Communication And Education About Dysphagia

Handout: What is Parkinson

This form is designed for speech-language pathologists in medical settings needing to communicate aspiration precautions to nursing, physician, therapy, and kitchen staff. The form is designed to specify the following:

  • Name, room number, date
  • New admit, re-admit, diet change, or variance form in place
  • Diet texture
  • Swallow precautions, including check boxes for 17 common strategies and room to write individualized strategies
  • Where meal trays should be delivered
  • Adaptive gear

This handout is designed for rehabilitation therapists working with patients, staff, family, and caregivers to ensure best practices when it comes to general aspiration precautions in the context of dysphagia. Many of these straight-forward strategies are frequently overlooked this visual is meant to provide a visual reminder for everyone involved in the care and safety of someone experiencing dysphagia. Note that these are general precautions and are not meant to target any one particular dysphagia diagnosis. Specific strategies will need to be added for individual cases.

Aspiration Precautions Resource: Staff Cue Cards

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Parkinson’s Disease: Resources For Patients And Families

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

What Diseases And Conditions Resemble Parkinsons Disease

PD is the most common form of parkinsonism, in which disorders of other causes produce features and symptoms that closely resemble Parkinsons disease. Many disorders can cause symptoms similar to those of PD, including:

Several diseases, including MSA, CBD, and PSP, are sometimes referred to as Parkinsons-plus diseases because they have the symptoms of PD plus additional features.

In very rare cases, parkinsonian symptoms may appear in people before the age of 20. This condition is called juvenile parkinsonism. It often begins with dystonia and bradykinesia, and the symptoms often improve with levodopa medication.

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Key Programs And Resources

The Parkinsons Disease Biomarkers Programs , a major NINDS initiative, is aimed at discovering ways to identify individuals at risk for developing PD and Lewy Body Dementia and to track the progression of the disease. It funds research and collects human biological samples and clinical data to identify biomarkers that will speed the development of novel therapeutics for PD. Goals are improving clinical trials and earlier diagnosis and treatment. Projects are actively recruiting volunteers at sites across the U.S. NINDS also collaborates with the Michael J. Fox Foundation for Parkinsons Research on BioFIND, a project collecting biological samples and clinical data from healthy volunteers and those with PD. For more information about the PDBP and how you can get involved, please visit the PDBP website.

The NINDS Morris K. Udall Centers of Excellence for Parkinsons Disease Research program supports research centers across the country that work collaboratively to study PD disease mechanisms, the genetic contributions to PD, and potential therapeutic targets and treatment strategies.

The NINDS Intramural Research Program conducts clinical studies to better understand PD mechanisms and develop novel and improve treatments.

The NINDS Biospecimens Repositories store and distribute DNA, cells, blood samples, cerebrospinal fluid, and autopsy tissue to PD researchers around the world.

Thickened Liquids Education And Resources

What is Parkinson’s Disease?

This handout is designed for patients, caregivers, and staff to illustrate where “hidden” thin liquids may pose a risk for people with dysphagia on thickened liquids. While not a comprehensive list, this handout highlights ice, straws, frozen treats, soup, and saliva, laying out the reasons why these things may pose an increased risk of aspiration and offering alternative solutions to reduce this risk.

Hydration is a persistent challenge for patients who are NPO. This handout describes the Free Water Protocol, established in 1984 at the Frazier Rehab Institute. The handout describes the risks, benefits, and guidelines around the protocol and is appropriate for staff, patients, families, caregivers, and therapists.

This handout is designed for speech-language pathologists working with patients who have dysphagia and are using thickened liquids as a compensatory strategy. The handout lays out the basics of these types of thickeners, including main ingredients, shelf life, how they’re thickened, and pros/cons.

  • Powder-based thickeners

There are, in fact, ways to make it so that thickened liquids don’t taste like snot. One strategy is to serve the drinks as cold as possible… even better, freeze them! For more details and to see a video of this in action, visit this blog post.

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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 .

What Causes The Disease

The precise cause of PD is unknown, although some cases of PD are hereditary and can be traced to specific genetic mutations. Most cases are sporadicthat is, the disease does not typically run in families. It is thought that PD likely results from a combination of genetics and exposure to one or more unknown environmental factors that trigger the disease.

The protein alpha-synuclein. The affected brain cells of people with PD contain Lewy bodiesdeposits of the protein alpha-synuclein. Researchers do not yet know why Lewy bodies form or what role they play in the disease. Some research suggests that the cells protein disposal system may fail in people with PD, causing proteins to build up to harmful levels and trigger cell death. Additional studies have found evidence that clumps of protein that develop inside brain cells of people with PD may contribute to the death of neurons.

Genetics. Several genetic mutations are associated with PD, including the alpha-synuclein gene, and many more genes have been tentatively linked to the disorder. The same genes and proteins that are altered in inherited cases may also be altered in sporadic cases by environmental toxins or other factors.

Environment. Exposure to certain toxins has caused parkinsonian symptoms in rare circumstances . Other still-unidentified environmental factors may also cause PD in genetically susceptible individuals.

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How Is Parkinsons Disease Diagnosed

There are currently no specific tests that diagnose PD. The diagnosis is based on:

  • medical history and a neurological examination
  • blood and laboratory tests, to rule out other disorders that may be causing the symptoms
  • brain scans to rule out other disorders. However, computed tomography and magnetic resonance imaging brain scans of people with PD usually appear normal.

In rare cases, where people have a clearly inherited form of PD, researchers can test for known gene mutations as a way of determining an individuals risk of developing the disease. However, this genetic testing can have far-reaching implications and people should carefully consider whether they want to know the results of such tests.

Resources To Help Visualize The Swallow

Understanding Movement with Parkinsonâs Disease â Therapy ...

Having dysphagia can make it difficult to eat out a restaurants or other peoples homes however, this shouldnt keep patients and their families from doing so. Mealtime is a significant part of the day for social interaction with family and friends This handout contains some ideas and tips to consider so that eating out can continue to be an enjoyable part of life.

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Information To Have Ready For Our Team

If youre calling the office for help or coming to an appointment, please have answers to these questions ready:

What is the specific problem? Are you having pain, balance issues or other worsening symptoms, for example?

When did the problem start? Be as specific as possible. Share the date and time of day.

Is it constant or does it come and go? If it comes and goes, do you notice a pattern? For example, is it connected to when you take medications or to a time of day?

Where is the problem? Left hand? Right foot? Be as specific as possible.

What happens during episodes? Describe a typical incident: My right hand tremor worsens and becomes jerky, and my right foot starts to jerk, too.

What makes the problem better orworse? Bring information on treatments, positions or medications that help or dont help.

How would you rate the problem on a 0-10 scale and why? In addition to rating the physical effects, you may want to assign numbers for how much it bothers you and affects your quality of life: Although its about a 5, or moderately disabling, its an 8 because its so distressing.

What medications are you taking? When you come to appointments, bring a full list of your medications for Parkinsons and other conditions. Include:

  • Dose of each.
  • Time of day or how often you take each.
  • Any allergies or medications that didnt work and why.

Have you had any recent incidents ? All of these can worsen symptoms for Parkinsons patients.

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