Starting a support group

We live in southern Wi in the us, I've been dx with PD for about a year. My wife is my partener, caregiver, though at this point I am still abel to pretty well care for my self. The one thing I have found most helpfull is here, these pages, mostly optomistic and up beat. I think it must be the sharing, anyway, with the help of my neuro and the Wisconsin Parkinsos assoc we are forming a support group. I'M a little unsure about all that, I'm a bit of a recluse, my wife no so much. She has been the driving force behind this, the clinic is going to provide a room, so I guess we'll what happens. Any suggestions would be greatly appreciated. Thanks

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  • Hello olpilot!

    You or your wife might want to check out :

    parkinsonspeechhelp.com/how

    It is a link to how to start a communication circle for speech BUT the suggestions are applicable to a support group too - because a communication circle IS a support group in itself.

    I've been thinking of starting a communication circle online through SKYPE. My concept was to not only provide verbal support (fun with AHs and scales) but also share interests - discuss films, book, sport, have a music jam session, etc. Anyone interested contact me.

    Similar interests makes for better communication. Communication leads to understanding and awareness. Your wife's suggestion of a support group is a good one. Go with it.

    Best of luck olpilot.

    Your wife is a treasure. Big hug to her. And hug to you too.

    Be well.

    Carry on strong.

  • Bravo! to you both

  • Thanks H-H!

    I re-discovered new vocal inspiration yesterday from Tina Turner ... and I thought of you and your love of rocking out with good tunes.

    I've been singing to strengthen my voice, improve my breath control, and increase my lung capacity. I was looking for new material and re-discovered a YouTube of Tina Turner Proud Mary Live 2009. A fun mini workout at 9:29. She was 71 years old in 2009 / born in 1939. WOW. Thank you Tina!

    Everyone is welcome to join in on the fun. Rolling on a river ...

  • I haven't been in a support group per se. But my PD exercise classes function as such. I think (just my opinion :) ) that caregivers need support groups and pwp's need activity and fun, since more men have PD they'd prefer action to talking . I could be wrong :D

  • just my observation.

  • Hi Olpilot

    My suggestion is to try to keep it fun and upbeat. Exercise and dance are great fun and really

    helpful.I went to a support group and got a little depressed. Where I live we do a lot of line dancing. Also there is a video you can get at WalMart by Leslie Sansone called "walk away the pounds" I believe a lot of people with PD can do these things. My motto is try to concentrate on what you can do not what you can,t.

    good luck in your endeavor.

    Brooke

    P.S. Life is not waiting for the storm to pass,its about dancing in the rain!

  • Hi Olpilot,

    I was dx over 4 yrs ago. I started a suppot group almost a year ago. My suggestion is that members know they have a safe place to express their feelings. To cry, laugh or vent and be themselves. I also supply info and publications from many PD foundations I belong to. In addition, I supply members with note books, folders, stickys, highlighters, etc. for them to take notes or express their feelings in words, art or music. Best of luck, Lilli

  • We have a support group in N. Illinois! Only 3 miles from the WI border! In Spring Grove, IL., McHenry County. We meet the first Wednesday of each month in the basement of a local Bank (which is extremely large and beautifully decorated), at 7:00 p.m. - 8:30 p.m. I would suggest you contact the ADPA or YOPDA. Do you mind sharing where your meetings are and when? Maybe we can help each other?

    Blessings,

    Carol

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