Support groups

[Beckey]

Does anyone belong to an in-person support group? Is that helpful?

[12stargate]

No.Is there such a thing?

[Ryan in reply to 12stargate]

There are many excellent local support groups in communities throughout the world that offer education, resources and support to plwp and careres!

[laglag]

I belong to a gym that is strictly for PwP's & we have an "informal" support group and it is extremely helpful. It's like this website, everyone can relate to what you're saying, they understand, and you get alot of ideas/recommendations. I would highly recommend it. At least try it.

[laglag in reply to laglag]

One thing I wanted to mention, just remember all PwP"s are different, so what what works for one, may not work for another, but support groups give you people to talk to that understand how you're feeling.

[serg in reply to laglag]

I LEAVE IN CHICAGO IS THERE ANY GYM OR SUUPORT GROUP THAT YOU OR ANY CAN RECOMENDME?

[mktbob55]

Yes, Colorado Springs has a great support group that meets the 2nd Saturday of each month. We have speakers from the PWP community and Healthcare professionals throughout the year. Check us out at co-parkinson.org

[mktbob55]

Unfortunately the site is not mobile browser friendly. You need a full browser like i.e.

[fwes]

PDSGSNM: Parkinsons Disease Support Group of Southern New Mexico meets monthly in Las Cruces, NM. We try to have a balanced program. Each quarter one meeting features an outside speaker, one meeting features a discussion of a special topic, and one meeting is for Caring and Sharing (sort of a face-to-face HealthUnlocked). We have a small lending library, books contributed by members.

We have an active educational/outreach program, directed at both PWP and health providers. We distribute literature on the symptoms of PD and offer presentations to adult groups. If national statistics (1%PWP) are applicable, our group is serving only about 3% of the PWP in our area. We have evidence that many primary care providers are slow to suggest PD, so many are undiagnosed and untreated. For those who are diagnosed and choose to withdraw our message is: We are here, We care, You are welcome.

Our website: pdsgsnm.org

[PositivePen]

in the UK there are local Parkinson's groups. They offer meetings when they have speakers about various aspects of the disease as well as social events. Look them up on the website.

[Madzy]

I find it very helpful. I live in Amsterdam . Perhaps you live in the neighbourhood in fact it is a chi kung group especially for Parkinson. We focus on all sorts of non medical methods to deal with this illness. It is very inspiring.

[Fenian5]

I am a leader of a support group. I was sceptical at first to join one, thinking I'd see many people in the later stages of PD and that's where I was heading. After I took the first step and went to a meeting, it's probably been one of the best things I've done to cope with PD. We are a group of about 20, including caregivers. We meet once a month, have a presentation/video, then a discussion over coffee and cookies. It's a great way to talk to people who know exactly what you're going through, to ask questions, and express concerns. That first meeting was four years ago and I always look forward to the next one.

[BillDavid]

Have a local Support Group, Poplar Bluff Parkinson's Disease Support Group, sponsored by Poplar Bluff Regional Medical Center, a local hospital. Meetings include both PwP and Caretakers. Both information presentations and separate discussion interactions. Community has evolved, one is not alone. St Louis ADPA Website lists numerous groups in South Eastern Missouri and Southern Illinois. Enthusiastically recommend.

BillDavid

[wilco]

...becky, I belong to a number of support groups, the best by far is my local one called SK&E APP...Sutton, Kingston and Epsom, Active Parkinson's People...if you're interested, email our leader, Val at [e-mail] okay...???

[soup]

Where are you? Have you been to one that was not helpful?

[Beckey in reply to soup]

I'm in the San Francisco Bay Area. I'm thinking I'd like to connect with other people, but when my mom had PD she went to one meeting of a support group and totally lost it, seeing people who were pretty far along in the progression of the disease. Her doc had been cheering her along, building her confidence, but the bottom fell out for her after that. Now I'm the one with PD, and I admire you posters who refer to conversations with your spouses. I always think, it must be nice to have someone of your own era to talk it all over with. Since I no longer have a spouse, I was thinking, maybe I would get a similar boost from joining a support group, some companionship from folks dealing with the same issues.

[soup in reply to Beckey]

My husband was a bit like that when he was diagnosed. He was 54 and the group members looked much older and more Ill. He was 'rescued' by a younger onset group over an hour travel away. Yes, they had some advanced symptoms but they had a sense of humour and more that we could share than just Parkinson's.

When we moved to another part of the country we set up a younger onset group to meet the needs of people in just that position.

We are much more resiliant now and can take people as they come.

[wifeofparky]

I belonged to a support group while my husband was alive. While we saw what could be his future in some of the members, I found it helpful and a great learning experience. I met several fantastic medical providers who gave me resources to help us both. They have a yearly Symposium that I still attend to keep up with current treatments and will volunteer more frequently since I have retired.

[charsie]

Here in Orange Co. California, we have 24 + 5 Caregivers Support Groups. When first diagnosed, Support Groups proved to be the best possible help for my understanding of PD. Our local hospital, HOAG also had a "PD Basics" series of 1.5hr. seminars x 6 weeks. Between the two I have been able to gather lots of information. Support Groups allows you to be surrounded with people with similar problems. If you have questions, most often a Support Group is where you can get good answers.

Note: I have created a list of 100+ Symptoms of PD (Not Drug Symptoms) which is the most complete to date. E-mail me @: [e-mail] with the subject 'Symptoms' and I will send you an Excel

information of the Symptoms + How to use the many features of the chart.

Charsie

[Grannani]

I belong to a Parkinsons support group that meets monthly. we have about 30 attend with a great program each month. I get the most from talking to fellow members about various problems, what meds etc. they have tried, or just enjoying jokes and family stories. We go to lunch together after the meeting. I think the best thing for me was seeing that these were not a bunch of old "cripples" but active happy people (for the most part).

[Beckey]

Thanks everyone for all these encouraging replies! I am going to find a support group by hook or by crook. I think sometimes when I get down in the dumps it's because I isolate too much. Just being part of this group has made a big difference for me, and for that I thank you all.

[racerCP]

I attended one meeting and found it not helpful. Two young physical therapists and a young social worker in attendance, each under 30. But I didn't have a specific reason or need for support in any area except encouragement to exercise and be proactive in my conditiion.