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:
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.
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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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
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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.
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.
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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.
Dailystrength Parkinsons Disease Support Group
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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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
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.
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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.
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.
Contact Us
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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.
Near Northwest And Northwest Suburbs
Arlington Heights Senior Center1801 W. Central Road, Arlington Heights, ILCaregiver Support Group Korean American Parkinsons Disease Support Group Parkinsons Disease Support Group
Auberge Memory Care5520 Lincoln Ave., Morton Grove, IL Parkinsons Disease Support Group/Caregiver Support GroupFree to attendFor more information email: Lorry Immergluck at
Barrington Area Council on Aging6000 Garlands Lane, Suite 100, Barrington, ILMultiple Support Groups:Parkinsons Disease Support GroupFor more information call: Bonnie Scherkenbach 8748810472
Family Alliance12555 Farm Hill Drive, Suite 800, Huntley, ILParkinsons Disease Support GroupFree to attendFor more information call: Linda Strueber at 815-3383590
Frisbie Senior Center52 E. Northwest Highway, Des Plaines, ILParkinsons Disease Support GroupFree to attendFor more information call: Nancy Flowers at 847-6533134
Presence Health/St. Joseph Hospital77 N. Airlite Street, Elgin, ILParkinsons Disease Support GroupFree to attendFor more information call: Susan Peterson at 8476222095 or Bev Kittler at 847-463-0859
State Banks of the LakesThe Community Room1906 Holian Drive, Spring Grove, ILMcHenry County Parkinson’s Support GroupFree to attendFor more information call: Kurt Dembski 815-207-1260
YMCA 300 W. Wise Road, Schaumburg, ILParkinson’s Support GroupFor more information call: Timothy Reed at 630-917-7617
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Groups For Care Partners
Care partners may also benefit from joining support groups. The Parkinsons Foundation notes that it is important for care partners to remember to care for themselves as well as their loved ones.
Care partner support groups can offer emotional support and practical advice for those caring for someone with Parkinsons disease. A person can ask a doctor about local support groups or search for them online.
Organizations and websites that offer support for care partners include:
- The APDA: The APDA provides resources and support for care partners as well as people with Parkinsons disease.
- The Parkinsons Foundation: This organization also provides information for caregivers.
- The Family Caregiver Alliance: This organization provides services for caregivers and the people who receive their care. FCA CareNav is an online resource for family caregivers.
Parkinsons Movement Disorder And Alliance
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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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.
Nicolas Made Some Contacts Through The Pds And Feels That You Can Learn More From Other People
From the PDS website, I managed to get in touch with a PDS branch and the nurse practitioner, which was very useful. So by making a few phone calls, I got some confidence with a few people in a similar position. I went along to the branch meeting. Met one or two other younger people in a similar situation and from there we formed a good social grouping and a contact group, which is very helpful in exchanging information on medication and other features and factors of the disease. And you find that there are many more people than you imagine who have got Parkinsons disease. So recommend the support of the local branch.
Parkinsons disease affects a lot of people in a lot of different ways, and its interesting to find out what range of knowledge there is. For example, I wasnt initially put on medication and lots of people were talking about medication and I thought, I didnt quite understand what was going on. Now Im on medication, I take more interest in that sort of thing. But a lot of that is the experiences of the people around the patch. Nurse practitioners quite helpful, but I found the best source of information are other people with Parkinsons disease.
bit of a hermit
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Aware In Care Parkinsons Hospital Kit
The Aware in Care Parkinson’s hospital kit protects, prepares and empowers people with Parkinsons before, during and after a hospital visit. It contains tools and information to share with hospital staff during a planned or emergency hospital visit.
An Aware in Care Ambassador may be able to visit your group to present about preparing for a hospitalization. Contact us at for more information