PD Support Group Leaders and Members

[srarndt]

Hi All!

Right here on this Blog, we could create a ton of realy cool resources for sharing with eachother's support group members! Please read on...I must apologize in advance for being so long winded!

Hi Dave (an excerpt from messages between me and Waco Dave)

I stumbled across this website just a few short days ago and have found it inspirational, helpful, disturbing and wonderful. How long have you been on it?

I am also a support group leader in Bisbee, AZ. I do not believe that NPF has a presence in this state, so our support groups are more typically part of the APDA.

Bisbee is a small, and somewhat poor town, in terms of PD resources. I would love to have our own blogs on here- as Support groups where we could share and brainstorm ideas for things to benefit our group members.

What do you think? Would you be interested in helping build such a support system? Have you encountered any other support group leaders on here or live who might be willing to participate? I love being able to offer help to our members but am getting desperate for ideas, speakers, subject matters that will continue to offer value to our small chapter's members.

Steve Arndt

520.432.6948

Bisbee, AZ

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wacodave

Yesterday

Hi Steve,

The post you saw from me was my first on this site. I just saw a link on my Facebook page and clicked on to it for the first time yesterday.

I would be very interested in forming a support group leader blog to share ideas for programs of interest to our members.

Our group is going on 26 years old and our membership is a little over 100. We have a medium size loyal membership that meets twice weekly, and they are always eager for new information.

Recently, I have begun downloading lectures from the various national websites, and using my abilities at editing and mixing audio and video, I am creating a library of DVDs that we are using for our monthly speaker programs. Our members seem to enjoy them because there is an accompanying slide show that helps to keep their attentionl

So far I have one on Fatigue and Sleep Disorders by Dr. Joseph Friedman and one on Secrets, Myths and Misconceptions on PD by Dr. Melissa Nirenburg. I woulld be happy to send you a copy of each of them as a free sample of what I'm doing. If you like them, I would only ask that you help cover the expense of duplicating and shipping for future programs at $5. each. Just to give you a brief concept of what I have to do to prepare a prgoram, I have to download the audio, then download each sllide, then edit the audio track down to fit our program schedule, usually 55 minutes or so, maybe longer. Then I have to digitially stretch each slide to match the speaker's comments for the finished product. It takes a while, but frankly we have run out of live speakers who have much to say that's new to our members, so that's what caused me to investigate the various webinars that offer downloadable lectures with slides.

I don't type well or fast so I won't be the quickest responder or as chatty in followups, so be aware that my interest is higher than it may appear.

Dave Verdery

201 Randy Drive

Waco, Texas 76712

254-848-4553

HOTPACS/Heart O' Texas Parkinson's and Caregivers Support

[srarndt]

Sooo, here is where we all get to play the game at a much higher level!

Support Group leaders, please ID yourselves and share with us any/all ideas for group resources, informational and fun group meetings, etc.!

Support Group attendees, YOU TOO!

Wow, like the ripples in the pond...profound ideas, small ideas, huge ideas, helpful ideas, fun ideas, etc., all radiating outward through the PD community!

[PASTGood]

Hi all!

I can't tell you how happy I am that you've started this blog to share support group ideas! Thank you!

I am a newbie support group facilitator in Calgary, Alberta, Canada. We run 8 different groups that meet monthly. Most of our groups have participants that are eager to come to each and every meeting, but we've had a lot of difficulty trying to figure out how to best meet our Young Onset group member's needs and how to keep them engaged.

Last month we emailed a survey to our Young Onset group members to try to get a clearer idea of their needs and wants of our group meetings. Of the responses so far, a common response has been that they want regular educational opportunities (ie. guest speakers such as neurologists, physiotherapists, speech and swallowing therapists, etc.).

Another message we heard loud and clear at last month's support group meeting was that the definition of "support" is a little different for everyone. Some members ONLY want education and round-table support discussions at the meetings while other members also believe that fun social events are "support" too. Some of the ideas mentioned for fun social events were having a poker night, Wii games, bowling or even just a coffee get-together.

One of our Young Onset group members brought my attention to your blog, and I am very thankful she did! I am looking forward to learning about creative ideas and resources and sharing them with our groups...and maybe once in a while, I'll have something useful to offer others here as well.

Thanks again, Steve and Dave!

Tanya

Calgary, Alberta