Young Onset Parkinson’s Support Group | MyParkinsonsTeam

Connect with others who understand.

sign up Log in
Resources
About MyParkinsonsTeam
Powered By
Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Young Onset Parkinson’s Support Group
A MyParkinsonsTeam Member asked a question 💭

Hi everyone!

I am currently a member of the Young Onset Parkinson’s (YOP) Support Group member in Des Moines, Iowa. Our group is supported by the Iowa Chapter of the American Parkinson’s Disease Association.

I am seeking your feedback and suggestions on how to get more YOP involved in this group? What would be some reasons that would cause you to not participate?

For those of you that are interested in becoming a member, please feel free to contact me.

We currently have a private Facebook… read more

posted January 23, 2018
View reactions
A MyParkinsonsTeam Member

A Facebook group is great for your members, but new people won’t find it. My suggestions to attract members:
- Make a website for the group.
See this as example http://www.cdparkinsons.org
- use mailing list software to send periodic newsletters and meeting reminders Mailchimp works well
- post notices in neurologists offices
- make business cards to hand out with website and contact info
- Use name tags at meeting. Call people by name

posted January 25, 2018
A MyParkinsonsTeam Member

@Dudong I'm sorry that has happened to you. Every ones input is important! We all need to be a part of the machine, no matter how small of a part we play! hugs, Karen

posted January 24, 2018
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member, thank you so much for your valuable input. This will help our group to better serve our members and be more effective.

I hope all is well. If you ever interested in participating in our quarterly meeting, we do have technology available for remote members to join. Just let me know.

Shirley

posted January 24, 2018
A MyParkinsonsTeam Member

@KaremBa, I understand what you mean. Reminds me of a support group I have been to & also quit because the leader of the group would not value my contribution to the support group.

posted January 24, 2018
A MyParkinsonsTeam Member

This is great! I wish I lived close so I could come Snowbird! I have been to a couple groups and the ones I've quit, I didn't feel welcome. My input (I was scared to have in the first place.) was dismissed by the person in charge because she had a better idea. Everyone's opinions are important, and it's hard to speak up! A "thank you for your input" whether it is too basic or not, is nice to hear.
Another group I've been to, they ask for volunteers every time, saying they always need help! I've gone to talk to the person who organizes volunteers, she told me she has nothing for me to help with, for 4 mths now! Let new people into the inner circle of volunteers. Yes, sometimes they won't be as helpful as your regular volunteers because they don't know the job.
Sometimes we need a sense of belonging, and to take pride in helping the group. Ask ahead of time, like before that part of the meeting if they would like to assist with something small? So assign an extra set of hand, even a small job now and then. Like handing out papers. Let them pass the stack for everyone to take one, then gather the extras at the end for you. Let others get involved and emotionally invest in the group.

posted January 23, 2018

Related content

View All
Is Anyone Here An Early Onset Patient?
A MyParkinsonsTeam Member asked a question 💭
Are There Any Veterans From The War In Iraq Or Afghanistan?
A MyParkinsonsTeam Member asked a question 💭
In 3 Mos.my Husbands Neurologist Went From Saying He Was First Steps Of PD To Dementia. This Is In Form Of A Question?
A MyParkinsonsTeam Member asked a question 💭
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in