Parkinson News You Can Use
A roundup of headlines, handy tools, and inspirational stories...
Free Parkinson's Dance Class on Oct31
Click on pdf image below to expand for details...
PDF
First floor access and free parking.
Classes are adaptive for sitting or standing.
Spouses, caregivers and friends are welcome.
Classes are adaptive for sitting or standing.
Spouses, caregivers and friends are welcome.
Introducing...Rochester Women vs Parkinson's
Rochester Women vs. Parkinson’s - a group of women all diagnosed with PD - have joined together to address the fastest growing neurological disorder in the world. We volunteer our time to educate the community about Parkinson’s, the toll the disease takes and the essential steps that will help to prevent the disease.
Our mission is to advocate for policies and practices that prevent Parkinson’s and to improve the treatment and quality of life for those living with the disease.
What Can You Do?
--Contact your senators and members of Congress. Ask them to support increased research and regulation of environmental poisons. Advocate for funds to clean up state and federal superfund sites.
--Contact local officials and ask them to desist in using toxic pesticides in public parks and by sidewalks.
--Encourage the public to stop using toxic chemicals on their lawns.
--Support sustainable methods of farming such as crop rotation and integrated pest management. Purchase organic foods.
Want to do more?
Our mission is to advocate for policies and practices that prevent Parkinson’s and to improve the treatment and quality of life for those living with the disease.
What Can You Do?
--Contact your senators and members of Congress. Ask them to support increased research and regulation of environmental poisons. Advocate for funds to clean up state and federal superfund sites.
--Contact local officials and ask them to desist in using toxic pesticides in public parks and by sidewalks.
--Encourage the public to stop using toxic chemicals on their lawns.
--Support sustainable methods of farming such as crop rotation and integrated pest management. Purchase organic foods.
Want to do more?
Recently Diagnosed with Parkinson's Disease?
PDF
Group Objectives
Julie Bartlett is a licensed mental health counselor with over 35 years of experience providing individual counseling, group counseling and consultation. For more information on this free service, contact her at 585.615.6844 or jcbartlett28@gmail.com.
UPDATE: The first 4-week session begins October 23, 2024.
To help participants:
- Feel less isolated and more connected.
- Create a personal care plan.
- Learn stress reduction strategies.
- Learn about and practice healthy coping skills.
- Improve communication skills and self-advocacy.
Julie Bartlett is a licensed mental health counselor with over 35 years of experience providing individual counseling, group counseling and consultation. For more information on this free service, contact her at 585.615.6844 or jcbartlett28@gmail.com.
UPDATE: The first 4-week session begins October 23, 2024.
Nutritional Deficiencies and Supplement Use for YOPD Patients
Laurie Mischley, ND, PhD, MPH
(added 09/16/2024)
This video was recorded 11/16/2023 for Young Onset Parkinson Network, although this information is relevant to EVERYONE with PD. Dr. Mischley notes that she has packed "3 hrs of material into the first hour"! Don't be intimidated, it's fascinating information.
Naturopathic medicine focuses on identifying the underlying cause of the condition and helping the patient to change those conditions. Naturopathic medicine relies primarily on diet, lifestyle, and natural products (e.g. vitamins, herbs) as treatment interventions. By evaluating the roles of genetics, environment, and lifestyle, individualized care can be provided for each patient.
Dr. Mischley's work is focused on identifying the nutritional requirements unique to individuals with neurodegenerative diseases.
Seattle Integrative Medicine is a private integrated health clinic located in Seattle, WA offering whole person care for people with acute and chronic illnesses as well as helping individuals take an active role in prevention.
Naturopathic medicine focuses on identifying the underlying cause of the condition and helping the patient to change those conditions. Naturopathic medicine relies primarily on diet, lifestyle, and natural products (e.g. vitamins, herbs) as treatment interventions. By evaluating the roles of genetics, environment, and lifestyle, individualized care can be provided for each patient.
Dr. Mischley's work is focused on identifying the nutritional requirements unique to individuals with neurodegenerative diseases.
Parkinson Foundation
Care Partner Summit 2024
When:
Where: Virtual (Zoom)
Discovering Adaptability & Resilience
Direct link for more information and to register:
Care Partner Summit 2024: Discovering Adaptability & Resilience | Parkinson's Foundation
The Care Partner Summit brings together care partners to share resources and
support to make life better for themselves and their person with Parkinson’s throughout November.
Saturday, November 2: Discovering Adaptabilty
Wednesday, November 6: New to Parkinson's
Wednesday, November 20: Essentials Toolbox
Miércoles, 27 de noviembre de 2024: cumbre para cuidadores
Preparing for a Hospital Stay?
These reliable resources provide checklists and forms that might smooth the way.
Parkinson Foundation
Hospital Guide
For most people, being in the hospital is a stressful experience. For people with PD, symptoms may get worse, and new symptoms, like confusion or thinking changes, can develop because of stress, infection, fatigue, sleep disturbances, surgery or new medications.
Already a delicate balance, PD symptom management can be even trickier in the hospital because:
Already a delicate balance, PD symptom management can be even trickier in the hospital because:
- People often do not get enough movement opportunities.
- Parkinson’s medications may not be given following the at-home schedule.
- Medications that worsen PD are sometimes prescribed.
- PD medication doses are often delayed or missed.
The Parkinson’s Foundation's Hospital Safety Guide is available to everyone in the Parkinson’s community at no cost to order or download.
Davis Phinney Foundation
Hospital Stays
When you’re living with Parkinson’s, hospital stays—planned or unplanned—require special consideration.
Your motor symptoms can worsen when you are coping with a medical illness in addition to your Parkinson’s; so, during a hospital stay, you might not be able to move as well as you usually can. You might also find that some symptoms, such as tremor, dyskinesia, and freezing, worsen during a hospital stay or emergency room visit.
Your motor symptoms can worsen when you are coping with a medical illness in addition to your Parkinson’s; so, during a hospital stay, you might not be able to move as well as you usually can. You might also find that some symptoms, such as tremor, dyskinesia, and freezing, worsen during a hospital stay or emergency room visit.
You can find Parkinson’s checklists, worksheets, and assessments to help you capture and share medical information at the link below. A few to complete and take with you during your hospital stay include “Prepare for Your Hospital Stay,” “Medical Summary for Your Doctor Appointment,” and “Daily Medication Log.”
Also, take with you the “Current Symptoms Summary,” which will make it easier for your hospital care team to understand and recognize your symptoms.
How Will We Pay for Care: Financial Considerations
(Advance cursor to 4 minutes, 20 seconds to begin viewing the recording.)
The financial costs of long-term care and long-term caregiving are enormous. Explore some of your options for this important aspect of caregiving.
Presenter: Arvette M. Reid, Client Services Director, SEIA
This virtual presentation was originally prepared for Insight Memory Care Center (IMCC) on August 28, 2024. IMCC is located in Fairfax, Virginia and serves the DC metro area. Their caregiving resources are used across the country.
Ms. Reid covers scarcity of caregiving resources, continuing care retirement communities (CCRCs) and deals specifically with the case of couples wishing to stay together.
Presenter: Arvette M. Reid, Client Services Director, SEIA
This virtual presentation was originally prepared for Insight Memory Care Center (IMCC) on August 28, 2024. IMCC is located in Fairfax, Virginia and serves the DC metro area. Their caregiving resources are used across the country.
Ms. Reid covers scarcity of caregiving resources, continuing care retirement communities (CCRCs) and deals specifically with the case of couples wishing to stay together.
Let's Talk About Living With Parkinson's...
With Friends and Adult Family
My Degeneration
A Journey Through Parkinson's
Peter Dunlap-Shohl
A Journey Through Parkinson's
Peter Dunlap-Shohl
How does one deal with a diagnosis of Parkinson’s disease at the age of forty-three? My Degeneration, by former Anchorage Daily News staff cartoonist Peter Dunlap-Shohl, answers the question with humor and passion, recounting the author’s attempt to come to grips with the “malicious whimsy” of this chronic, progressive, and disabling disease.
This graphic novel tracks Dunlap-Shohl’s journey through depression, the worsening symptoms of the disease, the juggling of medications and their side effects, the impact on relations with family and community, and the raft of mental and physical changes wrought by the malady.
This graphic novel tracks Dunlap-Shohl’s journey through depression, the worsening symptoms of the disease, the juggling of medications and their side effects, the impact on relations with family and community, and the raft of mental and physical changes wrought by the malady.
The PD Movers We Keep Moving
THE PD MOVERS – WE KEEP MOVING storybook is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease. The goal of the storybook is to inspire and connect individuals in the community by sharing the experiences of these remarkable individuals. We also hope these stories will educate others by removing the mysteries and misconceptions of Parkinson’s disease and provide useful resources regarding diagnosis and treatment to allow others to thrive with Parkinson’s disease.
With Children
I'll Hold Your Hand So You Won't Fall
Rasheda Ali
Rasheda Ali
Sometimes Parkinson's disease is difficult for adults to deal with, so you can imagine how much more perplexing it must be for children. In this beautiful book, adults will have an opportunity to read and discuss with children the most common symptoms of Parkinson's in a safe and creative environment that utilizes words, illustrations and medical facts about the disease.
Grandpa Used to Drive Big Trucks
Dr. Martha Nance & Steve Witebsky
Dr. Martha Nance & Steve Witebsky
In this chronic illness book for kids, readers learn that love is more powerful than any disease . . . and that grandparents living with Parkinson's disease are still our loving heroes.
The message at the core of the story makes it a perfect read for any child experiencing grief and loss—thoughtfully navigating how to mourn what has changed while showing young readers that even though they are just a kid, they can truly help!
The message at the core of the story makes it a perfect read for any child experiencing grief and loss—thoughtfully navigating how to mourn what has changed while showing young readers that even though they are just a kid, they can truly help!
How do I know if the Parkinson's educational resources I use are trustworthy?
This video was created and made available through Inova Parkinson's and Movement Disorders Center (IPMDC).
Inova is Northern Virginia’s leading nonprofit healthcare provider. Inova has within it a Parkinson's and Movement Disorders Center (IPMDC) that not only sees patients but also provides other resources, tools and support.
To sign up for Inova's Living Well with Parkinson's | IPMDC News, click here.
Inova is Northern Virginia’s leading nonprofit healthcare provider. Inova has within it a Parkinson's and Movement Disorders Center (IPMDC) that not only sees patients but also provides other resources, tools and support.
To sign up for Inova's Living Well with Parkinson's | IPMDC News, click here.
More Tools You Can Use...
From Sources You Can Trust
Parkinson's Foundation Hospital Safety Guide
The Hospital Safety Guide is a resource for people with Parkinson's and their care partners filled with useful tools and information to prepare for and navigate a hospital stay.
MJFF Guides for Living Well with Parkinson's
Easy-to-read, downloadable guides that provide practical tips and real-world advice for navigating life with Parkinson's disease
Your Checklist for Parkinson's Travel
PDF
As the busy summer season approaches, learn how to travel with greater ease with Parkinson's disease with the help of this tool prepared and provided by the Davis
Phinney Foundation.
6/19/24
Phinney Foundation.
6/19/24
HOME SAFETY SELF ASSESSMENT TOOL (HSSAT) v.3
PDF
Falls are the leading cause of injury, disability, nursing home placement, and death in adults over the age of 65 years. Yet in the United States one in every three older adults falls each year.
In order to address this problem, the Occupational Therapy Geriatric Group at the University at Buffalo
created the Home Safety Self Assessment Tool, as a part of combined effort with the Community
Health Foundation of Western and Central New York to disseminate information regarding how to
prevent falls in Erie County, NY.
Use of this tool as instructed in this book helps to prevent future falls. An online version of this tool is available for download at www.agingresearch.buffalo.edu.
6/19/2024
In order to address this problem, the Occupational Therapy Geriatric Group at the University at Buffalo
created the Home Safety Self Assessment Tool, as a part of combined effort with the Community
Health Foundation of Western and Central New York to disseminate information regarding how to
prevent falls in Erie County, NY.
Use of this tool as instructed in this book helps to prevent future falls. An online version of this tool is available for download at www.agingresearch.buffalo.edu.
6/19/2024
Stories you might have missed...
...from around the web, summer 2024.
From our friends at the Environmental Working Group
For blueberries, number and toxicity of pesticides continue to be a problem
DPF reminds us about skin protection.
Melanoma and Parkinson's
