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There are many community resources that can assist you in learning about Parkinson Disease, other movement disorders, general medical issues, the latest research, and local support groups. Some of the best sources of information will be your doctor, nurse, therapist, librarians, and education specialists.
The following resources provide reliable and accurate information on Parkinson Disease including research, clinical trials, advocacy, and fitness.
Research
Some non–profit organizations specialize in supporting research. The Michael J. Fox Foundation and Parkinson Alliance have information on the latest research on diagnosis and treatment.
Clinical Trials
Scientists and medical professionals conduct research on Parkinson Disease to find out more about its cause and cure and to pursue new treatment options. Clinical trials are research studies that are conducted with human volunteers. To become a participant in a clinical trial, volunteers usually fill out a questionnaire to determine whether they qualify. All clinical trials must be approved by appropriate medical and legal authorities for safety before starting. You should talk with your doctor about which types of clinical trials may be safe and/or beneficial for you. These websites provide information about clinical trials: CenterWatch, Clinicaltrials.gov, PDtrials, Fox Trial Finder and National Institute of Health.
- At Shirley Ryan Abilitylab we have several research labs working on Parkinsons: KTEAM and Goldman Lab.
Support
Persons with Parkinson Disease typically find that the need for support may vary from day to day. Needs can range from psychological support to physical assistance in the home or the workplace. Some individuals find that support groups are helpful. The LIFE Center and the Midwest American Parkinson Disease Association offer information on support groups.
Advocacy
Advocacy involves learning to be empowered and knowledgeable about your medical condition. It may also include contacting elected officials and encouraging them to support legislation that could positively impact people with Parkinson Disease, understanding your legal rights under the Americans with Disabilities Act (ADA), knowing your health care benefits, keeping a personal health history, knowing when to contact your health care professional and when to address any limitations that you may have. Finally, advocates can help educate people with and without Parkinson Disease or other movement disorders in their communities. Many of the organizations listed provide information on advocacy. Contact the Parkinson's Foundation, American Parkinson Disease Association and Parkinson Pipeline Project.
Health and Fitness
Your physical, occupational, and speech therapists can design a personalized home exercise program to help with strength, range of motion, functional mobility, and speech. There are also local groups for people with Parkinson Disease to exercise together at the Shirley Ryan AbilityLab Adaptive Sports and Fitness Center. Programs there include Functional Fitness, water exercise and a special class for people with PD. Northwestern Memorial Hospital has a PD exercise group as well. Always talk with your doctor before beginning a new exercise program.
American Parkinson Disease Association
Also available in Spanish on website
https://www.apdaparkinson.org/
1-800-223-2732
American Parkinson Disease Association Midwest Chapter
https://www.apdaparkinson.org/community/midwest/
630-933-4392
Parkinson's Disease Support Group - Loyola Medicine
Loyola Medicine offers a Parkinson’s disease support group for patients and their families. Join the Parkinson’s disease support group and connect with others to share your experiences and gain valuable information.These meetings are free and meet on the first Monday of every month, with the exception of holidays.
https://www.loyolamedicine.org/classes-and-support-groups/parkinsons-disease-support-group
512-202-8208
Chicago Movement Coalition
The Chicago Movement Coalition (CMC) is an alliance of community and academic partners that was established in 2019 to be a resource and advocate for members of the Chicagoland community who are underrepresented in the area of Parkinson’s disease care.
https://www.chicagomovementcoalition.com/about-us-our-team
Davis Phinney Foundation for Parkinson's
https://www.davisphinneyfoundation.org/
1-866-358-0285
Hubbard Street Parkinson's Project
Hubbard Street Dance Chicago is proud to offer the oldest Parkinson's dance program in the Midwest. The program uses contemporary dance techniques to work to slow the progress of the disease, as well as providing a community of support for our students.
312-850-9744
info@hubbardstreetdance.com
Northwestern's Lake Forest Health & Fitness Center
Lake Forest Health & Fitness Center offers a range of Parkinson’s Programming to adults with Parkinson’s disease and their caregivers. The medical fitness programs are designed for adults with Parkinson’s disease who wish to participate in low to moderate-intensity exercise.
847.535.7060
https://www.lakeforesthfc.com/services/medical-fitness/parkinsons/
Parkinson’s Resource Organization
Parkinson’s Resource Organization (PRO) is dedicated to improving quality of life for families and individuals affected by Parkinson’s disease through education, support, and practical resources.
https://www.parkinsonsresource.org/
(877) 775-4111
Lewy Body Dementia Association (LBDA)
912 Killian Hill Road, S.W.
Lilburn, GA 30047
https://www.lbda.org/
800-539-9767
Michael J. Fox Foundation for Parkinson’s Research
https://www.michaeljfox.org/
1-800-708-7644
Fox Trial Finder
https://www.michaeljfox.org/trial-finder
National Institute of Neurological Disorders and Stroke (NINDS) - Parkinson Page
https://www.ninds.nih.gov/health-information/disorders/parkinsons-disease
National Institutes of Health
https://www.nih.gov
ClincalTrials.gov
https://clinicaltrials.gov/
Northwestern University Parkinson’s Disease and Movement Disorders Center
https://www.parkinsons.northwestern.edu/
312-503-4397
710 N Lake Shore Drive
11th Floor
Chicago, IL 60611
Parkinson Alliance
https://www.parkinsonalliance.org/
1-800-579-8440
Parkinson’s Foundation
1-800-4PD-INFO (473-4636)
Parkinson’s Institute and Clinical Center
(650) 770-0201
Parkinson & Movement Disorder Alliance
Live stream education, support and social programs during COVID-19
(800-256-0966)
Shirley Ryan Abilitylab Parkinson's Disease + Neurological Rehabilitation Program
- Shirley Ryan AbilityLab Parkinson’s Educational Series
Free online educational series for people with Parkinson’s Disease and their care partners.
Brought to you by the Goldman Lab: https://www.sralab.org/research/labs/parkinsons
- Our Lewy Body Dementia (LBD) Education and Support series for people with LBD and their families is held on the 4th Thursday of the month from 1-2 PM. May’s session focused on the role of physical therapy for people with Lewy Body Dementia, led by Adam Burns, PT at Shirley Ryan AbilityLab Burr Ridge location. Please contact jgoldman02@sralab.org with any questions or need for additional information. If you have interested patients and families, please forward the sign-up link http://bit.ly/SRALAB_LBD.
- STARTING IN JUNE 2022 – A new program called MINDSET-PD (Mental wellness Initiatives Designed for Support, Education, and Teamwork in PD) focused on mental well-being and topics about cognition, emotional wellness, stress management, and communication strategies and more. This program, starting in May, will be a virtual 10 week course for people with PD and their care partners, led by Dr. Lauren Piper neuropsychologist, with education and activities. There will be two groups – one for early PD and one for more moderate-advanced PD, beginning June 21 and June 23, respectively. This new program is part of our Parkinson’s Rehabilitation Initiative and Center of Excellence. If you know of any patients and/or care partners who might be interested, here is the link for registration. https://bit.ly/Mindset-PD-Registration
- STARTING IN JULY – Our IDEAS 2.0 program (Interactive Demonstrations, Education, Activities, and Support for Mental Health in Parkinson’s Disease, IDEAS for Mental Health in PD) is back –and with new monthly sessions planned for the Homewood DayRehab site starting on July 9th. This new educational series will have live, in-person sessions on Cognition, Behavioral Aspects, Sleep, and Mood in Parkinson’s disease (PD) with guest speakers who are experts on PD, including physical therapists, neuropsychologists, and more! Live, in-person sessions will take place at the Shirley Ryan AbilityLab Homewood DayRehab Center. All sessions will also be available to watch on-demand. Follow this link to pre-register for the IDEAS Homewood program: https://bit.ly/IDEAS-Homewood-Registration
Smartphone & Computer Strategies for Parkinson's
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The KTEAM lab developed two new education hand-outs for adapting a smart phone for people who experience tremors.
There are various options to make using your smartphone easier when you have tremors or stiffness due to Parkinson’s Disease. Making some small adjustments in touch accommodations may result in your feeling much more confident in your ability to control your phone.
See below downloads for full instructions and education on how to modify your smartphone or computer for easier use:
