Penny Diagnosed When She Was 51 Did Not Feel Ready To See How Parkinson’s Disease Could Affect
I have to admit that Im also concerned whilst Im happy to go onto the web forum and communicate with people whove, with, who have had Parkinsons for twenty years. Im anxious about meeting people in the flesh, I dont want to, I dont want to see my future. My mother had a friend who had Parkinsons so Im sort of familiar with what Parkinsons in old age is like but Im not brave enough to confront what some peoples level of Parkinsons is in people my own age. And I suppose that thats part of me not trying to worry about the future.
Parkinsons Foundation Mid Atlantic:
This National PD organization has a local presence in the DC and Baltimore area. Our favorite feature of this website is the Parkinsons Library. You can search topics that you are interested in or pick from a wide selection of topics. More information than you could ever imagine, including an entire section devoted to caregivers.
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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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
Other Places To Find Support
Support groups aren’t for everyone. If they don’t appeal to you, there’s no need to force it. If you were involved in community, religious or hobby-based organizations in your life before Parkinson’s, keep up those ties and friendships. In addition, educating yourself about Parkinson’s, and getting involved with local or national Parkinson’s organizations, can be ways to meet people who share some experiences with you without joining a support group.
Find Support in the Parkinsons Buddy Network
Create connections and find community online in the Parkinsons Buddy Network. Were building an online support system, one buddy at a time.
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Brighton And Hove Branch
Our group offers friendship and support locally to people with Parkinsons, their families and carers, contact us to find out more.For information and advice on Parkinson’s, or for emotional support, call the Parkinson’s UK helpline on
Due to the coronavirus pandemic, our in-person activities were suspended. Some of our activities have moved online and we will gradually return to some in-person activities.
We know that support and friendship from group activities is important and we’re here to support you. You can get in touch with your local group for up to date information about activities using the contact details on this page.
Your Link To Local Resources
The Parkinsons Support Group of Humboldt County welcomes you. Most individuals that reach this page have probably been newly diagnosed with Parkinsons Disease and are searching for information and/or resources. That is why this page was designed early 2021 to let you know there are programs available in Humboldt County. The Parkinsons Support Group started about February 1995 and we are now reaching out thru the Internet.
More and more of the current research coming available shows that exercise is a critical element to an effective Parkinsons Disease management program. The links listed on the Resources tab provide a partial list of resources available in Humboldt County.
Whats Happening Currently?
Exercise has been shown to be one of the most important aspects to slow down the progression of PD. Locally, there are classes for Rock Steady Boxing, PWR! Neuro-movement and Chair Yoga. All are currently taught via Zoom. Guest presentations are also given periodically via Zoom. for local services and more information.
Currently there are two interest groups that are actively meeting. Both meetings are held via Zoom. One meeting is designed for individuals with Parkinsons and the second is for caregivers.
The Parkinsons Support Group meets via Zoom every Wednesday at 9:00 For more information contact: Phone: 707-822-7923 Email: [email protected]
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Parkinsons Movement Disorder And Alliance
- 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.
Peterson For Parkinson’s Support Groups
Active with Parkinson’s
PFP Care and Share – Small group for people with Parkinson’s
- Steve Cronin
PFP Care Partners – Small group for those who support people with Parkinson’s
- Kay Cooper
PFP Franklin Parkinson’s Support Group
- Gail Torrence
PFP Mt. Juliet Parkinson’s Support Group
- Ricky Baxley
PFP Paris TN Support group
- Gayle Cooley
Midsouth PD – Memphis Foundation & SG
- Judy Brown
Murfreesboro Senior Center PD Support Group
- Ron Ream
Team Fox Young Professionals Parkinson’s Group
- Alexa Simpson
A Nonprofit 501 c 3 organization. EIN 26-4144151
Sign up to receive the latest foundation news and events.
This Web site contains links to other Web sites that are maintained by third parties, including Web sites of other entities, each of which is independent of the Peterson Foundation for Parkinsons . PFP is not responsible for the contents of any third-party Web sites and shall not be liable for any claims or alleged damage or injury arising from the contents of such Web sites. Any links to other Web sites are provided as a convenience to you as a user of this website.
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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:
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:
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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.
Fiona And Her Husband Had Not Wanted To Join A Group But He Met Someone On A Charity Stall And
We knew there was a support group locally. But at the time my husband didnt really feel, and I was the same really we sort of didnt really feel we needed that at that time. And but having said that recently we went to a town recently where theyd got a Rotary Club event and there were lots of stalls and one of the stalls was the local Parkinsons Disease, it was like a support group and they were doing a fundraiser. And Id spoken to the, I think shes the secretary for the area on the phone and she said, Oh, you know, come along and say hello to us.
And I mentioned it to my husband, so we went along. And my husband was introduced to this gentleman whos in the group and hes had Parkinsons for quite some time, and he said over the last few years, he said he had to give up work because of his symptoms but he was referred to a consultant who worked with him, sorted out some medication and hes doing so well and just that half an hours conversation that my husband had with that chap did more than anything that hes had probably in the last four years because he was just able to talk on a one-to-one basis with this chap. I sort of was looking round the stall and chatting to the ladies on the stall and he said afterwards how helpful that had been just to be able to talk to somebody, and he said sometimes it does take time to sort out the medication. That was really, really helpful, and it gave my husband encouragement to know there is help.
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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.
Support And Support Groups
Most people told us that when they were diagnosed they had little or no experience of Parkinsons disease and did not actually know anyone who had it. Although most people had been informed about the Parkinsons UK and many had contacted the society and obtained useful information, some of them held back from taking things further by joining a Parkinsons disease support group. Most explained their reluctance like Jean did: I dont want to see round the next corner what might be happening to me, Id rather I didnt know.
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Parkinsons Disease Support Groups For Patients
Attending Parkinsons disease support groups can be helpful for many reasons. Whatever stage of Parkinsons youre at, the disease can be incredibly isolating, and many people report not feeling connected to others who dont understand their experience. This is among the many reasons why support groups are helpful for Parkinson’s disease patients. Whether you’re looking for Parkinson’s emotional health support or informative resources, there are many benefits to joining a Parkinson’s disease support group.
American Parkinson Disease Association :
There are no local chapters nearby with this national organization, but it is a wonderful resource if you are looking for more information on Parkinsons Disease and research.
They have put out a Parkinsons Disease handbook and other free downloadable booklets you can find HERE.
You can also find an assortment of webinars on various topics HERE.
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Pro’s Virtual Art Show
Last years virtual art show was such a hit, we will do it again this year. Our wellness programs have included hobbies, gardening, singing, and creative writing. We know that creativity in all its expressions improves wellbeing. This program will feature visual arts.
Lets make it a special night and take a tour through our virtual art show highlighting local artists who are living with Parkinsons. These artists are gathering to share their work with us! Invite your friends, celebrate and visit with some artists in our PD community.
FRIDAY, December 10th, 4:00 5:30 PM
Kevin Resisted Joining The Local Group Because He Thought It Would Be Full Of Old People He
I went down to London to Parkinsons Disease Society headquarters in Victoria about six, nine months ago because theres like, theres was a, there was a research establishment in there giving a lecture on stem cell research. And when I was down there, I met a few young people, and some of those young people hadnt joined their local Parkinsons Society because there were basically, mostly older people. Theyd like to join the society if it was for, you know, a young persons society, which Id like to do. But theres not one about. But having said that, the society here in is really good, very good.
Before the first time you went to that, how did you feel about going to it beforehand?
I felt that it wasnt for me, its for older people. I had this vision of people in their, all being in wheelchairs, I was nicely surprised that I had trouble spotting in the room who were the carers and who had symptoms because theyre all on drugs, apart from one or two people in wheelchairs shaking away. I never envisaged that I would go back again but Ive been going every since. I think its a really, really good idea.
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Dailystrength Parkinsons Disease Support Group
- 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.
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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