Attending A Peer Support Group For The First Time
Often the most difficult step is walking through the door for the first time. Once this decision is made, most people find that attending a Peer Support Group was helpful and supportive.
If you are particularly nervous, have a chat to the group facilitator either on the phone or immediately before the meeting. They can help ensure you feel welcome. You may even like to bring a friend or family member along for moral support.
There are a couple of things to keep in mind if you are attending a Parkinsons Peer Support Group for the first time:
- Peer support is not a substitute for medical treatment or professional counselling, and it is not a replacement for family and friends
- Parkinsons Peer Support Groups are open to people at all stages of the illness. It can be confronting to attend a group where there may be people with different or more advanced Parkinsons symptoms than yours. Remember that Parkinsons is progressive and that everyones symptoms and experience of Parkinsons is different, so one persons experience is not an indication of what your experience will be
- In some areas Parkinsons Peer Support Groups are also open to individuals with conditions that are similar to Parkinsons but have little support of their own .
- A Parkinsons Peer Support Group is a welcoming and accepting environment, where members individuality, privacy, and life experiences are respected.
Sharon Had Gone To A Support Group But Decided That Though She Was Normally Quite Sociable This
…and probably most importantly I have access to the occupational health counsellor, and when I started I thought that, a couple of sessions, on we be, wed be through. And what I have found is that the counselling sessions have been really, really helpful, I found them very, very difficult because we have talked a lot about my loss. So he has identified that I have had to deal with a lot of loss and therefore its made me dealing with, diagnosis and adjustment more difficult because I havent actually dealt with anything else so we, we do, you know, have to discuss things I dont want to talk about which is relationship with my, husband, relationship with my, family, how I felt about my sister dying, how I feel about, the people I work with, and it, it can be quite harrowing but, but it, but its been very useful because its meant that Ive been able to say what Ive thought I needed to say which perhaps I cant say to other people, and thats been very therapeutic.
Parkinsons Is Full Of Challenges
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.
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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.
Parkinsons Support Group Meetings Map
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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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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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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Parkinson’s Group For All
This group is facilitated by a community member who was a PD care partner and is open to anyone in the Parkinson’s community.
- 2nd & 4th Thursday, 11am-12pm PT
Email for the Zoom link.
This support group is open to everyone: people with Parkinsons, family members anyone impacted by a movement disorder.
- Every Tuesday, 12:30pm PT
Facilitated by a social worker, this group is for those with PD, caregivers, friends, and family. Registration is required.
- 1st Wednesday, 6pm PT
A series of fun, informative, and free webinars just for Women with PD. To maintain privacy for this group, care-partners and family members should not attend unless an event states that registration is open to all. All times are Pacific.
- Every other Sunday, 10am PT
This group is open to women living with Parkinson’s at any stage of their journey looking for connection and support. All times are Pacific.
- 4th Tuesday, 10:30am PT
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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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.
Parkinson’s Disease Support Groups In Northern And Central California
Here’s a list of pandemic -time Parkinson’s disease support groups in Northern and Central California. During the Covid-19 pandemic, many support groups have gone virtual/online while others are on hiatus. A few are meeting face-to-face.
Are you a caregiver to someone with PD or atypical parkinsonism living in Northern or Central California? Check out our list of caregiver-only support groups.
Are the meeting days/times below not ideal for you? Or do you live outside of Northern and Central California? Check out our lists of online support groups and scheduled virtual nationwide support groups.
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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.
For more information on drinking alcohol and alcohol units, visit the NHS website.
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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.
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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Support Comes In Different Shapes And Sizes
The first Saturday of each month, after our Parkinson’s fitness class, we all shuffle to a local restaurant for lunch. We call it lunch mates. As I am woofing down my cheeseburger, sweet potato fries and a chocolate milkshake, I look around the room. Everyone in the group was deep in conversation. Some were chatting about what medicine they take to control their symptoms, while others talked about their plans for the upcoming weekend. I also was aware of the caring partners who were talking to each other and sharing their personal challenges.
It became clear to me that support happens on many different levels. Some of us might prefer the structure of a traditional support group. Its safe. Its predictable, and it doesnt take much effort to participate. But others may like to go to a Parkinsons fitness class, nudge their neighbor and ask them about the Movement Disorder Specialist they see.
The Power Of Support Groups
Receiving any medical diagnosis can be daunting. Accepting the news that you have Parkinsons disease or Essential tremor may inflict feelings of fear, anger, frustration, and anxiety. Parkinsons disease and Essential tremor are both disorders of the nervous system which cause uncontrollable hand tremors, amongst other symptoms. While they differ in many ways, both of these diseases are progressive, meaning that they worsen over time. Many people affected by PD and/or ET fear the unknown, and feel alone. A recent study conducted by Parkinsons Victoria concluded that 55% of people living with PD report feeling socially isolated. However, there are multiple resources out there which aim to provide support, education, and awareness to people living with PD or ET.
Some of these resources include:
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Parkinsons Peer Support Groups
A Parkinsons Peer Support Group is a gathering of people whose lives are affected by Parkinsons, who meet regularly in a relaxed, welcoming environment.
Activities generally undertaken by a Peer Support Group include:
- Sharing information and solutions to common situations
- Hearing from health care professionals about new developments in Parkinsons medication, treatment options and research
- Discussing experiences and feelings
- Taking part in community awareness raising activities
- Enjoying company and friendship with others in a similar situation
Each peer support group is unique in its membership and style. Most Parkinsons groups meet once a month, however some meet every couple of months, while others meet weekly. Some groups are associated with a local healthcare service, while others are run by dedicated members of the community who may or may not have Parkinsons.
People living with Parkinsons, their carers, friends and family are all welcome.
Watch this video featuring Mansfield Parkinson’s PSG.