So, after hearing several fellow parkies, mention that they were ambassadors for the Parkinson’s Foundation I was very interested and thought I would check it out. Done my training. Sadie said she she would send me some supplies. So as an ambassador one thing I’d like to do is start an in person support group. There are none anymore since the pandemic in my area and I believe there is a great need.
Have any of you started any support groups?
Congratulations on becoming an ambassador! The Parkinson’s Foundation has some materials on their website that you may find useful:
Also, here are some tips on starting a support group. The article is about starting a men’s support group but it should still be relevant.
I was thinking about starting an informal virtual support group here if there is interest.
Hello and thank you for your work in facilitating support groups! I am a facilitator for a group, and work closely with Parkinson’s Association of the Rockies. My biggest challenge is finding speakers for the group. I’ve been doing this for a year now, and am not sure where to go. A time or two we have watched webinars, but I know my group likes to have live speakers. PAR has a list of local speakers, I’ve pretty much run the gamut on them. Ideas?
Thank you! I also work for the VA and have been talking with the director our whole health department. They are the ones who manage the support groups and they have PD just lumped in as chronic illness with everything else. She has asked if as an ambassador can I do presentations etc., and said she would check further into this. As a veteran they want veteran led groups. While I was lucky I never saw anything like so many have but I can relate to PD. Almost starting to believe when I ask God to use me to help others with PD in some way, that seeing several of y’all post about being Ambassadors was an answered prayer!
Oh we will have to chat! I’ve never done anything like this, but Sadie promised me that they would help me if I needed any kind of information and so forth, so I just jumped lol I am literally just starting to get ideas but the whole health Director at work did give me the name of a lady who is about an hour away from me that has some information she didn’t elaborate what information just had some information I would probably find helpful. Will be reaching out soon. Hoping to learn from the rest of you😄
Thank you for your service and your willingness to help fellow VA Parkies. I See @CynthiaInColorado chimed in about her work with Parkinson’s Association of the Rockies - PAR. I’m also involved with them in Northern Colorado.
When I first got started with support groups I found the formal ones were good (I’ve been a guest speaker), but a bit stuffy. They are something I want to attend 3-4 times a year. I wanted to start something less formal. We have 2 PAR supported groups in my area. One has been around for 10+ years. They meet at the local library once a month. It’s formal with speakers/topics, power point, etc. It’s a great group. The second group is the one I helped get set up with PAR. This group is called the NOCO Meet-up group. We meet at a large Starbucks one Saturday morning a month. It’s laidback and informal. This group is a bit younger than most - late 30’s to early 60’s. At least half of us still work full time. We just talk about life, family, kids/grandkids without the stigma of having to explain anything about our daily lives with PD.
A thought…What does your population need? Formal education or just a safe space to open up and share? Most of all, don’t be discouraged. People will appreciate your efforts more than they will tell you. We’re hear to help. Keep us posted.
Really they need both. Especially anybody who had been diagnosed during the pandemic I’m lucky that I have a good insurance, and could get into MDS. And if I can help at work in some way we have a wide range of ages with PD. Ideally, I would like to be able to offer at least twice a month for the community veterans of course would be welcome but I’m hoping that they’ll get their own program and veterans are way more laid-back at least the area I am in, but I think something local might need to be a little more professional, also planning on reaching out to people who have been involved in the past or see patients who have PD who might be interested in helping or making recommendations of other support in the area such as rocksteady boxing, etc.
This is awesome! I can tell you are passionate and committed. A recipe for success. Keep us posted.
Great that you are now an ambassador, hope you enjoy and create a great group