Parkinson Social NetworkMay Staying Connected Newsletter
Modifying Your Home: Low Cost to Remodeling w/ Tori Goldhammer
Tuesday, May 13th
10am-11:30am ET (9am CT, 8am MT, 7am PT)
In this presentation, Tori Goldhammer, an occupational therapist with over 25 years experience, will highlight both low cost and remodeling ideas for the home to help improve accessibility, independence and decrease fall risk. Recommendations discussed will include equipment and technology.
Tori Goldhammer, MS, OTR/L, ATP, ECHM, CLCP, Living at Home Consultations, LLC has been an occupational therapist for over 25 years with experience in all clinical settings. She began a community based practice in 2007 with a focus on home accessibility and fall risk mitigation.
Watch & Discuss: Self-Advocacy and Improving Your Parkinson’s Care
Wednesday, May 21st
10am-11:30am ET
(9am CT, 8am MT, 7am PT)
We will be watching together the recording of a Davis Phinney Foundation Live Well Today webinar: Self-Advocacy and Improving Your Parkinson’s Care. This Live Well Today webinar features a panel discussion of how to improve the quality of care you receive while living with Parkinson’s. Topics discussed include self-advocacy, palliative care, how to ensure your care team communicates well with one another, the role nurses can play in helping you live well, and more! After watching the recording, we will have a facilitated discussion of the recording.
ICYMI: In Case You Missed It!
If you missed the presentation: Psychosocial barriers and facilitators associated with Quality of Life for People with Parkinson’s with Dr. Bradley McDaniels, click the play button above to view on our YouTube channel!
Research Study Helps Family Caregivers PERSEVERE
PERSEVERE is a national study funded by the National Institutes of Health, led by Dr. Jori Fleisher at Rush University Medical, which is testing an educational program for family caregivers of people with Parkinson’s Disease who are experiencing changes in memory & thinking. PERSEVERE will test whether a disease-specific, caregiver-centered educational intervention improves caregiver knowledge, confidence, strain, and health outcomes – and whether it helps people living with Parkinson’s Disease, too.
Family caregivers will receive weekly educational guidance through a 12-week curriculum with resources and activities. All participation is virtual and scheduled when it works for you. There are no in-person visits and the person with Parkinson’s does not participate—just caregivers. Caregivers fill out online surveys and assessments at baseline and every two weeks throughout their involvement in the study, including a six-month follow-up period after the 12-week curriculum.
Interested in learning more? Visit https://redcap.link/PERSEVERE1 to watch a video providing more information about the study, hear testimonials from prior PERSEVERE study participants, and complete the screening survey to see if you are eligible.
Happening In Our Parkinson’s Community…
- June 21 – Virginia Parkinson’s Conference, in person, Williamsburg VA – Rescheduled due to weather, registration is open.
- Kirsten Bodensteiner, PT (who spoke in Oct 2024) & Body Dynamics are now teaching PWR! Moves Tuesdays at 1 pm in Falls Church. To learn more about these classes, click here for the information flyer.
- At Ease hosted by PADRECC (online) – Click this link for flyer for more information about the Tactical Humor Training for PADRECC Comedy Brigade, contact Jessica.Kaplan2@va.gov to sign up.
- Virginia Lifespan Respite Voucher Program is available for residents of Virginia. Visit the Division for Aging Services site to learn more or apply.
- Shenandoah University – Loudoun Campus is offering free SPEAK OUT! speech therapy for those living with Parkinson’s, in-person and virtual. Click here to see their flyer for more information or contact Myra Schatzki, Director of Clinical Education at myra.schatzki@su.edu or 540-665-4634.
- Parkinson’s Speech therapy via teletherapy in VA and DC – The University of Utah is a SPEAK OUT! Therapy and Research Center for the state of Virginia and the District of Columbia (DC) providing SPEAK OUT! voice therapy at no cost, contact them at 801-581-3506 or email speechpath@utah.edu.
- Power Over Parkinson’s has an extensive listing of programs in the Richmond area for exercise and education, visit their website for more information.
- Live in Maryland? MAPS has a very extensive support group listing on their website.
- Dance for Parkinson’s program at James Madison University – JMU has in-person and Zoom online classes. For more information about this program, visit their website here.
- SPEAK OUT! Online Home practice sessions are available each day at 11am ET/10am CT/9am MT/8am PT from Parkinson Voice Project.
- Sign up for PD Avengers TODAY! PD Avengers is the Global Alliance to End Parkinson’s Disease.
GIVE BACK TO THE COMMUNITY – BE A PSN BUDDYsm
Would you be willing to help a fellow Person-with-Parkinson’s Disease? We hope you will.
Frequently PSN receives inquiries from those newly diagnosed with Parkinson’s Disease, as well as people who are not newly diagnosed, seeking to speak with a fellow Parkinsonian on a one-on-one basis.
If you wish to help your fellow Parkinsonians by engaging in a telephone conversation, please let the PSN Board know. With your permission, we will provide your telephone number and email address on request. We will, of course, let you know each time we share this information.
To participate, kindly email board@parkinsonsocialnetwork.org, or call our office at 571-286-5000.
April Staying Connected Newsletter
Tuesday, April 8th @ 10am ET -11:30am via Zoom
Watch & Discuss: Overcoming Hurdles to Exercise
We will watch and discuss a recorded webinar by the Davis Phinney Foundation.
Dr. Mike Braitsch, Doctor of Physical Therapy discusses ways to overcome some of the common the hurdles to exercise you might encounter while living with Parkinson’s.
Saturday, April 12th @ 10:00am-11am via Zoom
Dr. Evan Gray, DO – Take control of Parkinson’s: Mastering Medications, understanding disease progression and improving collaboration with the Parkinson’s Disease Specialist
People living with Parkinson’s will learn how the medication can improve their symptoms and quality of life. Motor fluctuations will be discussed and how best to manage the ups and downs of Parkinson’s disease. We will discuss an easy-to-follow template when interacting with your movement disorder specialist.
Tuesday April 22nd @ 7pm-8pm ET via Zoom
Evening Carepartners Discussion
Join us for an evening discussion on topics shared by Parkinson’s carepartners. This session is facilitated by PSN volunteers with carepartner experience.
ICYMI: In Case You Missed It!
If you missed the presentation: Stand Tall and Fight the Fall – Fall Prevention Strategies for People with Parkinson’s w/ Dr. Mike Braitsch, PT, DPT click the play button above to view on our YouTube channel!
April is Parkinson’s Awareness month and April 11th is World Parkinson’s day. Visit https://worldparkinsonsday.com/ to learn how you can raise awareness and end Parkinson’s disease in your community!
Happening In Our Parkinson’s Community…
- April 11, 12, and 13 – Insight Into Parkinson’s – Free online educational event serves to provide an informative, inspirational, and supportive experience to our global warrior community. It is free to sign up and watch online live on the 11th and 12th of April (in your timezone). Two days of free streaming will start on 11th April, 9am AEST, to celebrate World Parkinson’s Day, and finish on the 12th April. The third day (13th April) is a dedicated day for Health Professionals.
- April 12 – Virginia Education Day, Richmond VA, hosted by POP: Power Over Parkinson’s – Registration is Open!
- April 22nd – 2nd Annual Parkinson’s Educational Event, Charlotteville VA hosted by APDA Virginia, The Parkinson’s Activity and Resource Center, and UVA Neurology Department.
- June 21 – Virginia Parkinson’s Conference, in person, Williamsburg VA – Rescheduled due to weather, registration is open.
- At Ease hosted by PADRECC (online) – Click this link for flyer for more information about the Tactical Humor Training for PADRECC Comedy Brigade, contact Jessica.Kaplan2@va.gov to sign up.
- Virginia Lifespan Respite Voucher Program is available for residents of Virginia. Visit the Division for Aging Services site to learn more or apply.
- Shenandoah University – Loudoun Campus is offering free SPEAK OUT! speech therapy for those living with Parkinson’s, in-person and virtual. Click here to see their flyer for more information or contact Myra Schatzki, Director of Clinical Education at myra.schatzki@su.edu or 540-665-4634.
- Parkinson’s Speech therapy via teletherapy in VA and DC – The University of Utah is a SPEAK OUT! Therapy and Research Center for the state of Virginia and the District of Columbia (DC) providing SPEAK OUT! voice therapy at no cost, contact them at 801-581-3506 or email speechpath@utah.edu.
- Power Over Parkinson’s has an extensive listing of programs in the Richmond area for exercise and education, visit their website for more information.
- Live in Maryland? MAPS has a very extensive support group listing on their website.
- Dance for Parkinson’s program at James Madison University – JMU has in-person and Zoom online classes. For more information about this program, visit their website here.
- SPEAK OUT! Online Home practice sessions are available each day at 11am ET/10am CT/9am MT/8am PT from Parkinson Voice Project.
- Sign up for PD Avengers TODAY! PD Avengers is the Global Alliance to End Parkinson’s Disease.
GIVE BACK TO THE COMMUNITY – BE A PSN BUDDYsm
Would you be willing to help a fellow Person-with-Parkinson’s Disease? We hope you will.
Frequently PSN receives inquiries from those newly diagnosed with Parkinson’s Disease, as well as people who are not newly diagnosed, seeking to speak with a fellow Parkinsonian on a one-on-one basis.
If you wish to help your fellow Parkinsonians by engaging in a telephone conversation, please let the PSN Board know. With your permission, we will provide your telephone number and email address on request. We will, of course, let you know each time we share this information.
To participate, kindly email board@parkinsonsocialnetwork.org, or call our office at 571-286-5000.
Parkinson Social Network 