Did You Miss Our June Research Forum Watch The Recording Below
Researcher: Dr Richard Gordon
Research Institute: University of Queensland
We are pleased to welcome Dr Richard Gordon from the University of Queensland. Dr Gordon is also a Science Ambassador for the 2023 World Parkinsons Congress . The WPC is organised by the World Parkinson Coalition every 3 years and provides a unique international forum which brings together scientists, clinical researchers, health care professionals and people with Parkinsons under one roof to discuss, learn, and engage with the latest scientific discoveries, medical and comprehensive care practices related to Parkinsons disease.
Dr Gordon will showcase the exciting program and range of events planned for the 6th World Parkinson Congress , which will be held in Barcelona, Spain from July 4 7, 2023. The panel will also include people with Parkinsons from Australia who have attended previous WPC meetings. The panel will discuss their life-changing experiences that WPC meetings offer for scientists, people with Parkinsons, as well as carers and anyone with a link to PD. The panellists will also be able to answer questions about WPC 2023 and provide advice for anyone looking to attend from Australia.
Did you miss the June Research Forum? You can watch the recording below now.
Driving And Parkinsons Disease
The ability to drive safely can be impaired by PD, as the disease has multiple effects on motor, cognitive , and visual functioning. However, giving up driving can be difficult, as driving is connected to an individuals sense of independence, personal control and self-reliance. Its important to evaluate how the symptoms of PD might be impairing the ability to drive. Drivers can also get an on-road assessment of their abilities at their local Department of Motor Vehicles.
Join Us At The Parkinsons Policy Forum
Telling your story on Capitol Hill and building relationships with lawmakers are important strategies to accelerate new treatments and find a cure.Taking place virtually this year,the Parkinsons Policy Forum is a time to unite members of the community and connect with legislators.
- For Researchers
- Staying Active in Policy
On Monday, March 22 through Thursday, March 25, 2021, this free virtual event brought together community members and researchers from across the country for research updates, policy briefings, advocacy trainings and networking opportunities.Learn more in our blog.
This year, the Parkinsons Policy Forum will be hosted on the online platform 6Connex, which allows you to enter a virtual environment similar to an in-person event with opportunities to attend live sessions, view content, interact with others and explore booths. Check out our guide for tips on using the platform as well as answers to common questions about the Forum, advocacy and March 25 Hill Day.
During the Parkinsons Policy Forum, we will recognize outstanding individuals or groups who advocate on behalf of the Parkinsons community. The window for award nominations has closed. The award ceremony will take place on Tuesday, March 23 at 4 p.m. ET.
Awards will be given to advocates who:
Learn about 2019s award recipients.
Any time is a good time to engage in advocacy! In fact, here is something you can do right now:
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How Is It Diagnosed
Diagnosing PD can be difficult because there is no 1 specific test for it. The diagnosis is typically based on medical history, a physical exam, and answers to specific questions. The physical exam will look for signs of PD like tremor or rigidity. Your doctor may use imaging or lab tests to help support a diagnosis of PD and rule out other diseases.1,2
If you think you have PD, it is best to see a neurologist, preferably a movement disorder specialist. This will be the person most qualified to recognize the signs of PD and provide an accurate diagnosis.1,3
What Are The Symptoms
PD is classified as a movement disorder. It is the most common form of parkinsonism, a group of conditions that are noted by 4 typical symptoms:1,3
- Tremor at rest, such as a slight tremor in a hand or foot
- Rigidity of limbs, neck, or shoulders
- Impaired balance when standing up , which can contribute to falls
- Slowness of movement or gradual loss of spontaneous movement
Other symptoms of PD may include:1,3
- Changes in handwriting
- Depression or anxiety
Symptoms of PD are generally mild at the beginning. The most common early symptoms are difficulty standing after sitting, stiffness in the limbs, or moving more slowly.1,3
As the condition progresses, more classic and obvious movement symptoms may appear. However, everyones experience with PD is unique. Not everyone will have the same symptoms or the same disease progression.1,3
Also Check: Is Resting Tremor Always Parkinson’s
Care For The Caregiver
Research has shown that as PD progresses, the strain on the care partner or caregiver also increases. While the caregiver is generally focused on providing assistance and support to the person with Parkinsons disease , the caregiver also needs support. Taking time away from caregiving duties, maintaining social connections, and asking for help from others are important steps to help the caregiver cope with their additional responsibilities and stress.1,4
Preparing For Your Role As Caregiver
Your role as a caregiver will change as your loved ones disease progresses. People with late stage PD need more assistance with everyday activities than those in early stages of the disease. Learn about the disease and how it progresses to create a plan for care, including what outside assistance you may need and when. While learning about PD, remember that each person has their own unique experience, and not everyone experiences every symptom.2
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We’ve Launched A New Online Community
Our forum has a brand new look and feel.
We’ve launched a new online forum with improved design and user experience.
If you’re new to the forum, take a few minutes to discover the support our online community can offer for people living with Parkinson’s. You can read posts from our community or get registered and start chatting at forum.parkinsons.org.uk.
If you’re an existing forum member, you’re already registered. Just head to the new forum and reset your password. You can use your existing forum username or the email address you registered with to do this.
The new forum should be intuitive and easy to use but as always, if you have any questions, please get in touch at .
We hope you enjoy using the new online forum!
In Partnership With The American Parkinson Disease Association
Helping people with Parkinsons and their care partners connect with each other is the reason weve partnered with Smart Patients to create a new online discussion forum for people with Parkinsons disease and their loved ones. Members in this online forum share help, advice, and information about treatments, symptoms, and side effects.
Smart Patients provides the opportunity to further a dialogue that nurtures the PD community, provides socialization, education, and critical access to information and allows APDA support and connect more people across the country.
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Coping With The Symptoms Of Parkinsons Disease
In addition to medication, there are steps you can take to help manage the symptoms. For example, there are several techniques you can learn that can be useful in overcoming freezing, a sudden, but temporary, inability to move. If you experience changes to your voice, there are voice exercises that can help.
Coping With The Side Effects Of Medications
Levodopa-carbidopa therapy is the most effective treatment for alleviating the motor symptoms of PD, however, long-term treatment with levodopa may cause dyskinesia . Dyskinesia can greatly impact a persons quality of life, and some people find it very disturbing. While there are currently no treatments for dyskinesia, it is an ongoing area of research. For those people who experience dyskinesia, medications may be adjusted or deep brain stimulation may be an option.2,3
Some medications used to treat PD can cause impulse control disorders, behavioral disorders in which the person acts out repetitively, excessively, and compulsively in ways that interfere with major areas of life functioning. The most common impulse control disorders seen in people with PD are excessive shopping, unusual or increased sexual behavior, compulsive gambling, and compulsive eating. Identification and treatment of these behaviors is critical as they can have devastating effects on the patients and caregivers lives.1
Also Check: What Is Off Time In Parkinson Disease
The Progression Of Caregiving In Pd
The role of the caregiver in Parkinsons disease is ever changing, with the demands increasing as the disease progresses and symptoms worsen. In the early stages of the disease, caregivers are helping their loved one cope with the diagnosis and learning how to manage the medications. Caregivers may encourage and support their loved one in completing daily physical therapy exercises and assist them due to their slowness in movement.4
As an individuals disease progresses into mid-stage, the caregivers duties and burden significantly increase. Fatigue and excessive daytime sleepiness may derail daily plans, and frustrations around communication increase.1
In the late stage of PD, caregivers face significant responsibility and challenges. Their loved one may have significant mobility impairments, and caregivers often provide much hands-on assistance. Many people with late stage PD experience freezing episodes, sudden but temporary inability to move. Freezing episodes can contribute to falls, and fall prevention is important in the late stage of PD. Many assistive devices are available to help people with late stage PD with eating, dressing, and walking. Late stage PD may also mean changes to the way a person thinks, including forgetfulness, confusion, and sometimes, dementia. It is important to remember that not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.1
Date: Saturday February 12thtime: : 30am 1: 00pm
Dr. Soania Mathur, diagnosed with PD at age 27, is a renowned expert on living well with PD. This Forum will be in a fireside chat format discussing questions submitted by attendees. View Dr. Mathurs Unshakeable MD website and then submit any questions in advance to .
Speaker Bio:
- Co-Chair, The Michael J. Fox Foundation For Parkinsons Research
- Board Member, The Davis Phinney Foundation
- Medical Advisory Board, Parkinsons Canada
- Medical Advisory Board, The Brian Grant Foundation
- Executive, Parkinsons Movement North America
- Board Director, Lakeridge Health Foundation
- Chair, Developmental Committee, Lakeridge Health Foundation
- Editorial Board Member, Journal of Parkinsons
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How Is It Treated
There is no known cure for PD at this time. However, there are many treatment options to help maintain quality of life. The goal of PD treatment is to control symptoms as best as possible.1,2
Treatments for PD may include medicines that promote dopamine signaling, such as levodopa. Levodopa is the most common drug used to treat PD. It works by increasing levels of dopamine in the brain. Other drugs may include those that stimulate dopamine receptors . Your doctor may use these drugs along with levodopa to better control symptoms.1,3
There are also some surgical options like deep brain stimulation . This requires surgery to implant a probe in the brain. The probe uses electrical impulses to modify the activity of the neurons in the brain that control movement.1,2
These treatments can often manage or improve motor symptoms. However, more research is needed to find treatments that stop the progression of the disease or treatments that help alleviate non-motor symptoms.3
What Causes It
In PD, the brain cells that make dopamine stop working or die. Dopamine is a chemical messenger. That means it helps parts of the brain communicate. It has an important role in the part of the brain that regulates movements. The loss of dopamine in the brain causes the movement symptoms of PD.1,3
The exact cause of PD is not known. Scientists believe it may result from a combination of genetic and environmental factors. PD is more common in men, but researchers do not know exactly why. Age is also a risk factor for PD. Most people who are diagnosed are older than 60.1,3
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