Parkinson’s disease (PD) is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. Like any caregiving journey, caring for a loved one with PD has its ups and downs, but it may come its own set of unique challenges.
We’ve compiled some resources to help you learn more about caring for a loved one with Parkinson’s and find PD-specific support.
Local Resources
University of Kansas Medical Center Parkinson’s Disease and Movement Disorder Center
We are fortunate in the KC Metro to have an internationally recognized center for Parkinson’s disease. The KUMC Parkinson’s Disease and Movement Disorder Center provides:
- diagnostic and treatment services for persons with Parkinson’s disease and related conditions
- specialized speech, swallowing, occupational and physical therapy as well as social services
- educational information about Parkinson’s disease, progressive supranuclear palsy, multiple system atrophy, Lewy body dementia, and essential tremor
- support groups for people with Parkinson’s Disease and family caregivers.
The Parkinson’s Foundation is one of the most recognized organizations in the world when it comes to information and support for PD.
- Visit the Parkinson’s Foundation caregiver portal to better understand the disease and find PD specific resources and support.
- View the list of support groups hosted by Parkinson’s Foundation of the Heartland. Support groups are offered for both people with PD and family caregivers.
American Parkinson’s Disease Association – Missouri Chapter
The Missouri Chapter, and they do have virtual support groups for both adult children and people with PD.
https://www.apdaparkinson.org/community/mo-resources-support-2/support-groups/
Parkinson’s Exercise and Wellness Center
The Parkinson’s Exercise and Wellness Center, located in Overland Park, provides an array of exercise programs that target motor and nonmotor skills, balance, speech, and sensory function to improve the lives of people with Parkinson’s Disease. The Center offers weekly fitness classes for caregivers and people with PD, twice-monthly support groups for family members, and quarterly support groups for people with PD.
National and Online Resources
Stanford Medicine compiled a list of online support groups and communities for family caregivers and people with PD.
The PMD Alliance, founded in 2019, is a national organization that offers free, high-quality events, resources, and community groups, as well as cutting edge continuing medical education opportunities for healthcare professionals. Check out PMD Alliance’s programs and resources designed especially for family caregivers of people with PD. PMD Alliance also offers virtual resources and support groups, which can be accessed through their app.
Founded in 2004, the Phinney Foundation is a national nonprofit helps people live well with Parkinson’s TODAY through resources, events, research, community, and more.
Do you know of helpful Parkinson’s disease resources that aren’t listed here?
Drop a comment below or get in touch with us. We’d love to hear from you.
Sandwiched KC is here to help as you navigate caring for a loved one with Parkinson’s Disease. We can assist you in finding resources, support groups, and programs that can help. Please reach out for support or find out how we assist family caregivers in the KC metro.
I have LBD Parkinson’s/Early Onset. I have searched and called everywhere to find a local, in-person support group where we are able to meet other to share and learn what is happening to our bodies. There are more support groups/organizations than I can count with caregiver support, but nothing for the individuals trying to live and navigate daily life with the disease. We matter too.
I am currently looking into starting up a group for the survivors of the disease. I would like to know if your organization would permit me to post the meeting information on your site? I would, of course, provide you with the information and meet or speak to the person responsible for making this decision. It will be organized and well planned out (who would have thought, ha ha). I have gone to my local library to confirm a meeting room is available and meets the criteria to support my plan. Now, I am needing to find out if there are people living with LBD/Parkinson’s locally who would be interested in meeting other individuals who are fighting the same fight.
Please let me know if you would like to jump on my “survivor train” and connect the actual people responsible for your organization’s need in the community. There is a lack of support, across the nation, to support and assist people who are actually fighting the fight. I wake up, go through my day and go to bed without ever getting a break. Unfortunately, I can’t drop off my disease for an afternoon and enjoy coffee and go shopping.
Thank you in advance for your consideration and I hope you have a great day!
Hi Robyn, we love this idea! We emailed you to get the ball rolling.