Interested in starting a Parkinson's Support Group

[FMundo]

I am interested in starting a local Parkinson's (Discussion) Support Group. I have compiled some information which I would certainly be willing to share. I'd be interested in information, experiences or thoughts of others... and in communicating with others who have a similar interest. [e-mail]

[GymBag]

Hello

I did that with another Parky who had advertised in the local newspaper for help . We contacted the Ontario association who said they would help and they assigned a liaison who would come to our monthly meetings. We placed a few notices in newspaper, and they gave us a human interest interview with photos. The local Baptist church ( not a member ) gave us free use of a meeting room once a month (nice people). We had 6 people at our first meeting including us and the liaison. 10 at our second meeting and so on . Meetings of 20 to 30 people including spouses now but we have probably 50 people with PD but attendance sporadic. Often caregivers come with out the Parky. My wife runs the whole thing now because a Parky probably cant do it. It is a lot of work, getting presenters and organizing super walk and tulip sales. Too stressful to expect a Parky to handle it. Suggest that you attend a few existing support group meetings in nearby towns. Suggestions

Coffee and donuts

Presenters: local pharmacists , hospital liaisons , mobility stores,

Once in a while ,dinner meetings at restaurant

Boat cruise etc.

Coffee and donuts,

Young and new Parkys will not come anyway so have meeting mid week and mid day. 1pm on 2nd Wednesday every month so older retirees can make it.

Good luck

Be happy

[FMundo in reply to GymBag]

Hello ShakeyOldGuy,

I appreciate your thoughtful response. I'm new to the idea of a "Parkinsons" Discussion Group. I do have a lot of experience with Men's Groups however. I belong to one in Maine (been a member for 12 years). I have started two men's groups in addition to that that meet every two weeks in Arizona (the other place I live). One was started a 14 months ago, the other just about 4 months ago. They are going strong (there are 8 men in each).

My idea for a Parkinson's Discussion/Support Group is to limit it to men who have Parkinsons. Same sex, no Caregivers. No "expert speakers." Purpose of the group would be similar to that of my regular men's groups . . . to provide a place and opportunity for participants to share their lives, their current journey and discuss anything else that is important to them. While I expect that much of what we would talk about would be PD related . . . I have enough "topics" (outside of PD) for men to discuss to last a good five years. I am serious.

I have discovered my life hugely expanded by being involved in a Men's Group. To be present to the vicissitudes of a dozen or more lives is a privilege, a responsibility.... and to have the collective wisdom of other men to deal honestly with my own life has been a real eye (and heart) opener.

It has occurred to me that the type of group I describe above would be enormously valuable to me and other men who face the huge challenges that Parkinson's brings. My belief is that PD offers up challenges that are particularly difficult for men to handle. Diminishment of capability, growing dependency, dissolution of traditional role as provider ... just for starters. Women face the same thing.. but for men who are often "lone wolves" (who's primary or only friend is their wife) ... this is a situation that can be overwhelming. And apathy (if not full blow depression) sets in.

Compare this situation to that of being in a men's group where you discover a group of men who share the same journey, who cover each other's back. Who share their joys and vulnerabilities. This is the kind of "life giving" opportunity that is truly needed by those of us who face the challenges of this disease.

My interest is in identifying other people with a desire similar to me who might be interested in being a catalyst in their own community to start a Parkinson's Men's Group. I have a lot of information to share and would appreciate thoughts and ideas from others. Thanks for your input.

[Serenity_finaly-1 in reply to FMundo]

I do not know if you are interested but there are a lot of groups to get connected here. I don't know your age but this being a primary retirement designation has many opportunities, especially during the winter. I would allow women though because they do bring a more sensible approach to P.D.

[FMundo in reply to Serenity_finaly-1]

I know we live in a co-ed world, and believe strongly that women belong together with men in virtually all dimensions of life. My interest in having an "all men" PD Group is in developing some of the synergy that occurs amongst men when they discover they have the support of other men first and foremost. Yes and there are in fact things that can only be said and heard in the company of other men. Because they walk the same path in being men in our society.

Note that sexual dysfunction and plumbing problems that are often PD issues are side issues and barely deserve mention.

I certainly understand and accept that others may be interested in mixed groups and would be glad to share ideas with them.

I think Park Bear's idea of a group that utilizes SKYPE is an interesting idea. There is the problem that many people with PD and that is with speech, which might be exacerbated by a computer hook up (or it might not). On the positive side, the "transportation problem" would disappear and people who would otherwise be too remote to consider being part of a group, could join.

I have four articles I would be glad to forward to anyone interested in starting a group:

Support groups: those threads that bind (by a psychiatrist who has a group and PD as well)

Nat'l Parkinsons Foundation's PD Support Group Manual

Why I set up a PD support group that is just for women

If you'd like a copy of above emailed to you, let me know

[e-mail]

[AmyLindy in reply to FMundo]

Emailing you!

[Maxkas in reply to FMundo]

Why no women?

We suffer from PD as well

[p-oui in reply to FMundo]

FMundo, I am glad to see you taking your expertise to help others, just an idea, what about sharing your info with PWP online, both sexes?

[FMundo in reply to p-oui]

Problem is I can't possibly "cut and paste" all the info into HealthUnblocked. Info includes stuff I've downloaded and it isn't just URL's that I could post.

Second, I will in the fall, offer a product called "Parkinson's Online" which is a database built on Evernote that has just about everything you could possibly find on the Internet all indexed and searchable with notes on how to use it. Currently there are 140 subject indexes more than 700 newsletter articles, links to organizations and sites and information trails that I have pursued the last three years. I expect there will be over a thousand items by this fall. I'm working on this full time.

This to be offered FREE and will be, essentially, my Swan Song to fellow PwP Travelers. I am hoping to enlist the help of a few others to keep adding articles and indexes. Majority of people will have "read-only" access.

[p-oui in reply to FMundo]

A beautiful gift to be sure.

[park_bear]

Group video meetings are possible using Skype and other applications. I would be interested in such a group if open to all.

[answerseeker]

Ever consider having an all women's group going at the same time in a different room in the same location? Couples or PD person with caregiver could still come together but there would be an opportunity to have the benefits of conversations that often only take place in the company of the same sex. Perhaps both groups could come together at the end for the refreshment part of the get together.

[Serenity_finaly-1 in reply to answerseeker]

hmm interesting This does mean I would have to learn SKYPE. Learning brain needs hurt.

[p-oui in reply to Serenity_finaly-1]

Skype is very easy

[FMundo in reply to answerseeker]

AnswerSeeker . . .

Not a bad idea. I was briefly (2 meetings) involved in a "large" men's group of Parkinsons men ... that had about 20 men in it. In the one hour session there was really no time for "checkin" which is where everybody gets a chance to talk about what they're involved in over the past two weeks. It is so critically important that people have time to speak. With that sized group some only took the time to say, essentially, "I'm alive and kicking..." which is so unsatisfactory from all sides. I really didn't want to go back. The substance of the meetings was so "surface issues" I didn't care to continue.

I think that "Parkinson's Support Groups" can take a wide range of configurations. And many of them will work fine.

My interest is in supporting my fellow man, offering this venue of self discovery and personal strengthening that I sense Men's Group configuration would be most helpful with. Men's Groups can be intense... and I imagine a Men's Group consisting of guys facing Parkinsons would be profoundly important to those who particiated.

That's what I plan to implement.

[MacDoodle in reply to FMundo]

Sounds like a a great initiative and your clarity around why it's exclusive is important, there is a lot more to a mans character once there's some space to breathe outside of our usual relationships. When we can relax our need to prove ourselves or measure up, we can feel heard which is half the battle when dealing with PD

[FMundo in reply to MacDoodle]

I think you understand where I'm headed. Its easy for a PD "Support Group" to devolve into a group that "has expert speakers"... includes care givers, and includes members of both sexes. Allowing this to happen would diminish the power and impact that being a member of a men's group has.

Over the years I've watched many men relax, come to experience the support and understanding of other men. . . to trust and expose their vulnerabilities and to expand their ability to empathize with others. Rather quickly you realize that others are coping with problems - the vicissitudes of life - just like you are. And you discover you have blind spots.

Having Parkinson's is a very big deal. Having a team that has your back would be extremely helpful. Witnessing the courage and the worries of others would be sobering and strengthening. And the group doesn't and shouldn't focus just on the disease. But also could encompass much about being male in our society at this time . . . and about one's journey from beginning to end.

[AmyLindy]

Ditto -for Women, once I find them in my area! My Rock Steady Boxers are all really nice& older men-- I ache for a few gals that I can relate to...zip 28405

[AmyLindy]

A "devolving" group , Aye, I get that. Our Big Group in town at the Sr Center offers the Expert visitors, and these ONLINE GROUPS (plethora of them, I think I have 4 memberships I follow now) provide plenty of hard core information ... a gender specific support group is precisely what I need right now. I am encouraged to blaze that trail. Thanks to you @FMundo.

[FMundo in reply to AmyLindy]

Go for it Amy. My belief is that meeting every two weeks is the optimal frequency . . . Every week is too much, once a month too little. Biweekly just right.

[GymBag]

I agree . Lots of things can and probably should be co-ed but women should have women's clubs and men should be able to form groups that allow the freedom to be men, what ever that is. I used to really enjoy the week at hunt camp. I talk to male Parkys and observe that once they show a sigh of weakness and need a bit of help putting on their socks next thing is that their wives turn on the instinctive MOTHERING . Its just a short downhill slide to loss of independence, especially when your children pick up on it.

[wifeofparky]

Parkinsons.org has many resources to help. I facilitate a Caregiver Support Group in my community. It is very rewarding and helpful. Good luck.

We have occasional speakers but for the most part we meet to discuss current issues we are experiencing and to give each other support and resources.