Tuesday, April 23, 2024

Young Onset Parkinson’s Support Group

Parkinsons Is Full Of Challenges

Not What I Planned for Me or My Family: Young Onset Parkinson’s Disease Diagnosis

Living with Parkinsons disease or caring for someone with Parkinsons is full of challenges, but you dont have to feel alone. Parkinsons Queensland currently operates 33 support groups throughout metropolitan and rural Queensland. A support group is an informal gathering of people who share similar experiences, situations or problems. Parkinsons Queensland support groups offer members a chance to meet and talk with others while offering each other emotional and practical support. Besides helping you realise you are not alone, a support group gives you a chance to share your feelings and hear the experiences of others. Meetings are informal and friendly, and new members are always welcome. Parkinsons disease support groups are ideal for people living with Parkinsons disease, their carers, friends and family members. Support groups encourage the growth of knowledge. By knowing more about Parkinsons disease through the experience of others, and through professional resources, you will discover new ways of dealing with your own symptoms and challenges. Support groups can help you renew your sense of hope in dealing with changes to your lifestyle, and offer you the chance to make new friends.

Support Group Meetings Typically Involve:

Group discussions and sharing experiences, information, practical tips and advice on living with Parkinsons disease Visits from the Parkinsons Queensland staff members Social activities Guest speakers who are invited to meetings to discuss topical and relevant subjects. These may include occupational therapists, social workers and doctors Parkinsons Queensland support groups also have a range of support and information resources for use by members.

Parkinsons Queensland support groups use a selfhelp model and are not therapy groups. Our support groups are coordinated by volunteers who may also be a health professional from your local area, a person living with Parkinsons disease or a carer. Support groups appeal to a range of people for a variety of reasons. Some members like to be very active and involved in the planning of meetings and activities, other members prefer to simply enjoy the company. Support groups vary in their dynamics, from the number of members, to the age and interests of the individuals. When you join a Support Group meeting, you may meet people who have had Parkinsons a lot longer than you. Youll definitely meet people who have had different experiences to yours. Dont be afraid. No two people with Parkinsons are ever the same and its important to remember that everyones journey is unique.

*If enquiring with our Support Groups directly, please remember it may take some time for people with Parkinsons to answer the phone.

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Talking To Children About Parkinsons Resources

Those with YOPD who are also balancing parenthood have a distinct set of challenges, such as helping their children understand and cope with the diagnosis. These resources can help:

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Best Way To Find A Local Support Group

You might also try looking for a support group thats close to home so its easy for you to get involved. Search the PMD Alliances online database of support groups divided by state. You could also ask your doctor for recommendations.

Although every support group for people with Parkinsons disease is designed to help you find the support you need to keep on living your life, every support group is also unique.

About The Young Onset Parkinsons Disease Support Group


The Young Onset Parkinsons Disease Support Group of Iowa is a group of people with young onset Parkinsons and their caregivers who provide support to each other with the unique challenges that this conditions creates at a younger age.When someone who is 21-50 years old receives a diagnosis of Parkinsons disease, it is referred to as early onset Parkinsons disease, or young onset Parkinsons disease. Learn more about young onset Parkinsons disease.

Meeting Format: Meetings are held in-person around the Des Moines Metro, but all meetings are teleconferenced to include members from around the state. Social gatherings are also planned on a regular basis.

Facebook Group: There is a private Facebook group available to reach other people with Young Onset Parkinsons disease. Search Parkinsons Young Onset Support Group Of Iowa

Contact: Sean Jenkins at [email protected] or Shirley Burke at [email protected]

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Free Support Priceless Rewards

Whatever medical condition you or a family member may be facing, its nice to know that you don’t have to go at it alone.

We encourage you to take advantage of one of the many support groups offered by Burke Rehabilitation Hospital.

Sometimes just talking about things with others who understand has immeasurable benefits.

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.

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Finding The Right Group

If you’re feeling frustrated about life with Parkinson’s disease, being part of a support group can be one of the best ways to reduce stress and connect with others who can relate to your experience. Care partners and family members also benefit from sharing questions and concerns with like-minded others.

Many resources are available to help you find a support group, including your neurologist or physician , local hospitals , community calendars in local newspapers, and websites of national Parkinson’s disease organizations.

Not all support groups are right for everyone, however. For starters, they come in different formats, ranging from large, formal meetings to smaller “living-room” get-togethers. If you don’t like the first group you find, it’s worth looking for one that suits you better. If you can’t find a group you like in your area, consider starting one. If you are unsatisfied with the available options, you’re probably not the only one feeling that way.

Parkinsons Movement Disorder And Alliance

Living Well with Young Onset Parkinson’s Disease

Key Specs

  • Membership fee: Free
  • Structure:In-person support groups, virtual Zoom support groups, chat forums/message boards
  • Details: Offers both in-person and virtual support groups, educational videos and resources, and support is available for care partners
  • Things to do: A survey needs to be completed first before you can participate in the online community

The Parkinsons Movement Disorder and Alliance is a nonprofit organization that focuses on characteristics like empathy, creativity, resiliency, and shared learning.

It also has a wealth of support and educational services. Aside from online programming and Zoom support groups, this organization also offers various in-person support groups located throughout the country.

Additionally, the organization features numerous educational programs like “Lunch with Docs,” in which individuals can meet with a movement disorder specialist virtually over lunch from the comfort of their own home.

There are free workshops across the country called In Sync for supporting and teaching people interested in developing their skills as a support group leader.

There, people can learn skills and build confidence in designing and leading their own support group for Parkinsons disease or other movement disorders. Leadership experts and healthcare professionals also provide guidance through informational presentations.

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Parkinson’s Young Onset Support Group Meeting

If you have been diagnosed with young onset Parkinson’s disease, this might be the support group for you.

When someone who is below the age of 45 receives a diagnosis of Parkinson’s disease, it is referred to as early or young onset Parkinson’s disease.

Younger people will experience the disease differently due to their unique life circumstances.

Come learn about resources, the newest research, and how to manage symptoms… all while developing new relationships with others who are living with this disease.

RSVP required. Please call the APDA Information & Referral Center at 745-7520, ext. 1 to RSVP or if you have any questions.


Local Groups For Younger People

Are you interested in meeting other younger people affected by Parkinson’s? Our groups for younger people give you the chance to socialise, network and do things.

Our current groups are listed in alphabetical order below. Click on the links to find more about when and where each group meets and what they do.

If you’re interested in starting up a group in your local area, or having your group listed, please contact .

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What’s Happening At Burke

Please complete the Community Health Needs Assessment Survey

Please follow this link or the QR code below to take a confidential 10-minute survey that asks questions about what you think are the most important health issues in our community and what matters to you most.

The CHNA survey results will inform the development of a plan, involving many community partners, to improve the health of our community. The survey is also important because its results can impact funding, spending, and other wide-reaching decisions about health care. Please tell your friends and family and encourage them to participate. Thank you for your time and for helping us gain valuable insights to respond to the needs of the community.

Parkinsons Support Group Meetings Map

Young Onset Parkinson

View Support Group Meetings Map in a full-screen map.

Please contact a PAC team member for more information on support groups including contact information and the current status at 245-2786.

If you would like to submit your support group for public listing or would like to submit changes to a listed support group, please contact .

Why join a Parkinsons support group?

People who have been through, or are going through, a similar circumstance can do more than sympathize with you they can relate to your situation and keep you from feeling like you are alone. Support group members offer firsthand insight into many aspects of navigating the disease.

For some people, the most difficult step is walking through the door, but most find that once they make the decision, the experience is helpful and supportive. Remember, a support group is not a substitute for medical treatment or professional counseling and it is not a replacement for family and friends.

When do support groups meet?

Support group meetings are typically held once a month. Some groups may choose to meet more frequently or less often depending on the needs of the group. The meeting is set by the group leader in the initial planning stages.

If the existing groups in your area are not convenient for you, you may want to contact our Program Director to see about starting a new group.

What can PAC do to help a Parkinsons support group?

PACs Speakers Bureau

2101 Sardis Road North, Suite 102 Charlotte, NC 28227

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What To Expect From A Support Group

Some in-person groups are small, others are large. Some groups meet during the day, while others gather in the evening or even on the weekend. Some in-person groups meet in a community-based setting, like a YMCA, a library, or a church basement, while others may hold meetings in a hospital conference room, a clinic, or a rehabilitation center.

Meanwhile, online support groups also vary in size and in demographics. Some groups have been around a long time, with members who have formed friendships over the years, while others may be relatively new groups with people who are still getting to know each other.

One thing all support groups have in common in this: They want to help people affected by Parkinsons disease.

How To Open Up In A Group Setting

If youre new to talking in a support group, you may feel a little uncertain. Thats totally normal, as any experienced support group member can tell you.

First, contact the facilitator and ask about the group. Try to learn as much as you can about the group culture and what will be expected of you. Some groups will assign you an informal buddy to help get you acclimated to the group, so you might ask the moderator about that possibility.

Then when you get to your first meeting, consider these strategies to help you get integrated and begin sharing:

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Topics You Might Discuss

A support group may discuss a variety of topics centered around living with Parkinsons disease, including accepting your diagnosis and finding ways to live your best life, as well as issues that may be important to caregivers. That might include:

  • challenges you have encountered and how to handle them
  • adaptations youve had to make in your daily life, such as with housework or grooming
  • how you deal with feelings of loneliness or grief
  • your experiences with depression and anxiety
  • issues related to sexuality and relationships with spouses or partners
  • relationships with adult children or other relatives
  • side effects from medications how they have affected you
  • new research into treatments
  • talking to a loved one about the progression of symptoms

Starting A Support Group

Young Onset Parkinson’s Disease Panel

Some tips to help you start your own support group:

Choose the group’s target audience.Is it just for people with Parkinson’s, or are care partners and family members invited as well? If you live in a larger city, you can consider gearing the meeting toward a more specific group, such as people with young-onset Parkinson’s disease.Churches, community centers, libraries and other spaces with meeting rooms are great choices. Because members may want to share personal stories, more public spaces like coffee shops and restaurants may not be ideal. You can also decide if your group should meet monthly, twice a month or even weekly.

Figure out a format for the meetings. Will there be one “leader” who facilitates discussions or will members take turns hosting the meeting? From time to time, try to schedule guest speakers such as area neurologists and allied care professionals, like physical therapists and nutritionists. If there are exercise groups for people with Parkinson’s in your area, invite them to give a demonstration and share their services. Of course, leave plenty of time for simply chatting about life with Parkinson’s disease, too.

Spread the word. Ask your doctor if you can share flyers in the office, and let your local hospitals know about the group, too. Bring flyers to libraries, coffee shops and other community spaces. If you’re tech-savvy, start a Facebook group or page, or make a basic website. These are also good ways to keep in touch with members.

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Guys And Games Gathering

This is a group for men with Parkinsons. Its based on the idea of meeting in a casual and relaxed setting where recreational games form a backdrop to simply chatting. Manuka Tennis Club provides that casual setting but playing tennis is simply an option: the games range from tennis to boules and Finska, from backgammon and boggle to board games. The chat ranges from simply social to the sharing of information and experiences of Parkinsons of course.

For those who want to get on the tennis court, every meet includes a 45-minute tennis-based exercise session run by Manuka coach David Beniamini. Importantly, these sessions cater for all skill and fitness levels. You can be a beginner. The primary emphasis is on exercise and movement, so important for Parkinsons, while enjoying tennis.

Dont be dissuaded if youre not so interested in tennis or games. Come along and meet up with other members. Partners are also welcome.

This group meets 10am-12noon every second and fourth Thursday of the month at Manuka Tennis Club on Flinders Way in Griffith. Occasionally we might schedule extra meets at other venues. For scheduled dates and details please check the Calendar.

Substantial Matters: Life And Science Of Parkinsons Podcast

Every other Tuesday, host Dan Keller, PhD, interviews Parkinsons experts to highlight the treatments and techniques that can help you live a better life now, as well as the research that can bring a better tomorrow. Episodes focus on a range of topics relevant to your daily life, including new levodopa delivery methods, exercise, clinical trials, nutrition and more!

Date: Every other Tuesday Location: Online, or any way that you listen to your podcasts

Learn more about the Substantial Matter podcast by clicking here.

PMD Alliance is a leader in live-stream programming offering a variety of live stream educational and community building programs to movement disorder community through the NeuroLife Online® programs. The platform and service model will helps ensure the community remains socially connected, continuing to learn, and be active.

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What Is Are Parkinsons Support Groups

Parkinsons support groups are a gathering of people with common experiences or concerns who provide each other with encouragement, comfort, and advice. Support groups are also a place to give and receive emotional and practical support to others who are in the same situation. Parkinsons support group meetings provide you with a chance to:

Dailystrength Parkinsons Disease Support Group

DuPage Young Onset Parkinson

Key Specs

  • Details: Easy-to-use interface, small and intimate support group, and provides access to doctors
  • Things to consider: It’s not a very active group

The DailyStrength Parkinsons Disease Support Group is a free and welcoming online support community with more than 400 members and 3,000 posts.

The mission of the group is centered around empowering and inspiring each other to overcome PD-related and life challenges.

Overall, the DailyStrength website is easy to navigate, and registration is straightforward and quick. Posts are informational, practical, and thoughtful. This is, perhaps, a good place to start for people looking for a smaller, more intimate online support group that is not overwhelming or associated with a national organization.

Even though the site is not moderated, to keep the support group safe and positive, DailyStrength has a set of guidelines that the members are asked to follow.

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