What Is Parkinsons Disease
Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.
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How Parkinson Association Of Alberta Can Help
We recognize that every person is unique and so is the treatment of PD. We provide support, services, and programs for all people with Parkinson disease and their families. These supports and services include one-on-one/family support counselling, support groups, information and resources, education sessions, assistance in identifying and locating community and government resources, and much more.
Parkinson disease affects the entire family. While it is, of course, true that only one person physically receives the diagnosis the ripple effect created can have a tremendous impact on the care partner and family.Care partners play an important role in ensuring the well-being of their loved one. To varying degrees and at differing times they provide emotional support, help with medications, assistance with physical challenges, and much more. Many caregivers see their role as being an advocate to and for their loved one. They make sure that both medical care their loved one receive and life decisions that need to be made lines up with their life goals and maintains a good quality of life.Caring for another human being is one of the most incredible acts of love there is. As we get older or a loved one becomes ill or is diagnosed with Parkinsons the level of care required can change. With Parkinsons the need for care typically changes gradually, over time.
Starting A New Peer Support Group
Fight Parkinsons is happy to work with individuals who are interested in starting a new Peer Support Group for people living with Parkinsons.
While Fight Parkinsons is unable to provide financial support or an ongoing facilitator, we are able to support a group through:
- Regular updates and information from Fight Parkinsons
- Regular visits from a member of the Fight Parkinsons Health Team
- Telephone and email assistance
- A dedicated Peer Support Coordinator whose role it is to liaise with and support you in your role as support group facilitator
- Peer Support Leader training
To discuss the possibility of setting up a new Peer Support Group in your area:
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How Much Does In
The fees associated with private in-home Parkinsons support services vary depending on the level of care required. The Australian Government and various state governments offer a number of support packages for those living with Parkinsons disease, including those that fall under the Commonwealth Home Support Program, Home Care Packages, and more.
For more information and to work out a care plan for in-home Parkinsons disease support, get in touch with our friendly team today.
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Getting The Support You Need
Article written by Jackie Hunt Christensen.
Getting past the distress of those three words, You have Parkinsons can be tough. At this point, you may be saying to yourself, I am not sure if I can handle all the challenges I am facing.
In addition to getting the best medical care possible, living well with Parkinsons is also going to require finding and getting the support you need in other areas of your life. Remember, support does not have to come solely from a spouse, or even a family member, but can be found with anyone who is willing to lend a hand.
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Fatty And Sugary Foods
Fatty and sugary foods, such as cakes, biscuits, and pastries, contain lots of calories, fat and sugar. Try to reduce how often you eat them, especially if you are trying to lose weight.
If you have high cholesterol or are diabetic, you should seek further advice from a dietitian.
Generally, unless your GP, specialist or Parkinsons nurse have advised you not to drink alcohol, a small amount, such as a glass of wine or a beer every now and again, should not cause any problems.
People can respond to alcohol in different ways, so talk to your medical professional if you have any concerns.
Remember to take into account any medication you are taking for other conditions. Alcohol can also cause problems with low blood pressure.
Men and women shouldnt drink more than 14 units of alcohol a week. Keep at least 2 days each week free of alcohol and avoid binge drinking.
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Support Groups And Events
The Duke Movement Disorders Center is proud to participate in a variety of events to support and educate individuals with Parkinson’s and their care partners, including regular support groups, introductory programs to provide basic information on Parkinson’s, workshops for couples, and monthly singing and communications workshops. Click on the choices below to learn more about each of our upcoming programs.
For more information on any of our groups or programs, please contact Allison Allen, LCSW or Anne Kosem, LCSW by email or phone .
Parkinson’s Support GroupsPatients diagnosed with Parkinson’s disease, as well as their care partners, are welcome to attend the Durham Parkinson’s Disease Support Group, held from 10:30 a.m. to noon on the fourth Tuesday of every month. This free support group, sponsored by the Parkinson Foundation, is open to all .
Due to the ongoing pandemic, all support groups are now being held online. We hope that you can join us from your living room or other safe location. For more information, or to join, contact Allison Allen, LCSW, at 919-681-2656, or .
Young Onset Parkinson’s Disease : Triangle YOPD Connections
The Loud Crowd
Loud and Proud meetings are now being held online on Mondays from 2-3 p.m. Please join us from your living room or other safe location. For more information or instructions on how to join, contact Meredith Nye at .
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Keith Admits That Part Of His Interest In Other People With Pd Is To Make Comparisons With His
Well I suppose Ive got used to having it and think, well it hasnt progressed as rapidly as I feared over the last three years. So if theres somebody in the Parkinsons Disease Society branch support group thats had it for twenty years and I can look at her and think, oh well if thats what shes like after twenty years. And other people have had it for a long time dont seem to be quite as bad as you imagined. So in some way youre trying to measure your own progression and the progression over the last three years is not quite as bad as Id feared. So in many ways Im a bit more optimistic than I was.
Okay but seeing other people helps in some ways?
In some ways, yes. Its got pros and cons really. You can see what theyre like but you feel well you want to ask them how long theyve been like that and you really want to be, asking them all the questions about how long theyve had it and what patterns take developed since they were first diagnosed to see if theres any parallel. But as I said before the symptoms are so individualistic that you really cant draw too many conclusions from other peoples experience unlike lots of other diseases.
Because that would be a concern for people wouldnt it?
You couldnt keep me away now. I find them a great help, because youre talking to fellow sufferers, you are comparing notes, you are enjoying yourself because youre amongst people that can sympathise. We get some very good speakers.
Why Is Distinguishing Young
Socially, people who are affected by PD at a younger age experience the disease differently they may be at a different stage of their career and often have less time to engage in their own care. They may also have children or are planning to have children and have questions regarding passing on PD genes.
Medically, doctors tailor treatment when it is a younger person with PD. The younger you are, the more likely the disease is genetic. Your care team may offer genetic testing or counseling. Younger brains also have a higher neuroplasticity potential which allows the brain to handle and respond to disease and therapy differently.
Best Overall: American Parkinson Disease Association
American Parkinson Disease Association
Founded in 1961, the American Parkinson Disease Association is reportedly the largest grassroots network devoted to fighting Parkinsons disease. They have invested more than $185 million in raising awareness, supporting educational programs, and funding research, with the goal of putting an end to PD.
The professionalism, ease of use, and the number of support group services that the ADPA provides are what make this organization the best overall support group for Parkinsons Disease.
In 2017, the ADPA collaborated with a support site, called Smart Patients, to form a new online support forum. Within this free discussion forum, patients with PD, loved ones, and caregivers can socialize, learn more about PD, and share tips and coping strategies about living with the disease.
As an added bonus, registration is simple: All people need to provide is an email address. The website overall is clean, well-organized, and conversations are easy to sift through or start on your own.
Besides its friendly and warm online support community, the ADPA has over 1,400 free support groups nationwide. Each one is uniquesome are devoted to people diagnosed with PD at a young age while others focus on caregivers or family members of people with PD.
The ADPA also offers exercise classes, such as Tai Chi, non-contact boxing, yoga, and dance, as well as educational seminars and social meet and greet events.
If You Are A Discussion Moderator
If youre a moderator or a facilitator for a support group for people with Parkinsons disease, or family members or caregivers for people with Parkinsons disease, you play a very important role in helping the group to be a success. You can start by setting an agenda for each meeting so everyone knows what to expect.
A few other tips for getting the conversation flowing:
- Start with opening questions that help people to settle in and get comfortable.
- Make sure everyone knows the ground rules and expectations.
- Give everyone the opportunity to speak and to be heard.
- Encourage members to listen when others are speaking.
- Be respectful if some people choose not to share.
- Use a handheld microphone in case some people are soft-spoken.
- Develop some strategies to handle situations in which a few people monopolize discussions.
- Ask group members to brainstorm topics for future discussions or suggestions for guest speakers.
You also might check out resources from organizations like the Parkinsons Foundation that can help you plan your meetings, encourage participation, and foster the connections that are so vitally important to support group members.
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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.
- A handbook on Parkinsons disease
- Links to national Parkinsons organizations
- Exercise resources
- Mailing, at least two weeks in advance, to:
OHSU Parkinson CenterCenter for Health & Healing Building 1, eighth floor3303 S. Bond Ave.
This information is from Lisa Mann, RN, the education director at the OHSU Parkinsons Disease and Movement Disorders Program.
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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Parkinson’s Care Partners Support Groups
Caring for family members begins at home. Yet the challenges faced by care partners are many. Care partners may feel alone or overwhelmed by their caregiving demands, which can make it hard to cope and may lead to depression. Parkinson’s Care Partners Support Groups are offered free of charge to all Parkinson’s disease care partners in PA, NJ, DE, and MD.
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We are proud to have you as a part of our community. To ensure you receive the latest Parkinsons news, research updates and more, please check your email for a message from us. If you do not see our email, it may be in your spam folder. Just mark as not spam and you should receive our emails as expected.
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What Are Parkinsons Caregivers Support Groups
Parkinsons caregivers support groups are meetings designed for the family members and loved ones of people with Parkinsons disease . If you live with or care for someone with advanced PD, you may find support groups a great source of comfort and a chance to connect with other caregivers. If someone you love has been newly diagnosed with Parkinson’s, support groups can help you and your loved one come to terms with their condition, seek out information and know what to expect.
Here are some of the benefits of Parkinson disease support groups for caregivers:
- Connection: As a caregiver, you may not have many opportunities to socialize. Attending a Parkinsons caregivers support group is a chance to connect with others who understand your situation.
- Advice: Support groups arent just for emotional support they can also be great for practical advice, especially from others who have been where you are.
- Education: The more you can learn about your loved ones condition, the more you can help them. A support group should provide you with plenty of information and actionable advice both in terms of caring for someone with Parkinsons disease and making sure your own needs are met.
- Knowing you are not alone: Being a caregiver can be isolating at times. Simply knowing you’re not alone can help relieve depression and equip you with coping skills.
How Can I Help Manage My Loved Ones Care
A spouse, adult child or other family members can play a significant role in helping a person with Parkinsons disease stay organised and receive the best care possible.
- Find a movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinsons disease. This specialised doctor is generally on the cutting edge of Parkinsons disease care and can help your loved one build a plan that works best for them.
- Attend doctors appointments with your loved one. Doctors appointments can be overwhelming, and its helpful to have another person along to listen and take notes. A partner may also have a better sense of whether mood symptoms like depression and apathy are a concern. Take a list of questions with you to help guide the appointment and ensure you get all the information you need.
- Stay organised with a calendar that you can take to doctor visits. Note doctor and therapy appointments, the start and stop dates of medicines, and any side effects you may notice.
- Keep a list of all doctors phone numbers and addresses in case of an emergency. Also keep a separate and updated list of all prescription medications, their dosages and instructions and the prescribing provider. Note allergies or medication intolerances as well.
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Family Caregiver Respite Program
As a family caregiver, it is important that you attend to your own health needs and find ways to engage in activities to aid in stress reduction and self-care. In the face of advancing Parkinsons disease, many caregivers slowly take on increasing responsibilities and have few opportunities for meaningful breaks.
The Family Caregiver Respite Program was created to provide modest financial assistance for the care of Parkinsons patients who require assistance with Activities of Daily Living and cannot safely be left alone. This program reimburses costs for short term care for the Parkinsons patient, while the caregiver receives a break from their challenging role. In order to be eligible for this program you must:
- Be a primary caregiver who resides with a family member with Parkinsons
- Live in the PRO service area
- Provide a description of the financial situation that creates a barrier to obtaining additional care services
Upon completion of The Family Caregiver Respite Program application, approved caregivers will work with our social worker to create a respite plan and explore other resources to support their caregiver role. Funds must be used within 12 months.