American Parkinson’s Disease Association (APDA)
Virginia Education Day – September 28, 2019
Karl Robb, wrote about his experience in his blog, A Soft Voice in a Noisy World. Click here to check out his post, A Day of Parkinson’s Education in Williamsburg.
Here are my notes from the first session which was a discussion on
Living with Parkinson’s Disease.
Local Parkinson advocates, Karl and Angela Robb, were on the panel as were another couple, Charlie and Cammy Bryan. The gentlemen have both been diagnosed with Parkinson’s, and the ladies are their care-partners.
I’m sure you’ve heard how having a sense of humor helps when living with Parkinson’s but having a sense of humor about it isn’t the same as making fun of it. Karl noted that Parkinson’s isn’t funny but some of the things that happen are.
Karl and Angela are well-known for their positive outlook and when you meet with them, you will always come away with a smile on your face. Sometimes people think that having a positive outlook is kind of Pollyanna-ish but I liked Angela’s comment that it helps people to put one foot in front in front of the other.
Charlie talked about how difficult it was for him to give up the little things like loading the car for a trip. He can’t do this anymore because of his difficulties with balance and grabbing onto things. He’s also having to get used to Cammy opening the door for him instead of the other way around. One good thing about Parkinson’s is that it’s gradual so it’s easier to adapt.
The two couples were asked for suggestions about how to avoid stress and anxiety. They talked about how anxiety increases as medications dip and become less effective, how executive dysfunction increases, and how being in a crowd is stressful. They suggested that people always have a plan and be prepared to adjust your plan. You may find you need to have multiple plans and learn how to juggle.
When asked about the impact of Parkinson’s on their business or work, Charlie told us how he’d learned to pace himself and cut back on his load, particularly with the loss of his executive function (the ability to organize and multitask). Karl and Angela decided that best option for them was to be self-employed. One of the many things they do is write to books with a focus on living well with Parkinson’s, and their workbook, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind and Spirit was in every attendee’s goody bag.
I’ll write about the other sessions in coming weeks. In the meantime, here’s some more news from APDA!
APDA Symptom Tracker app
Introducing an easier way to track your symptoms and manage your care.
Download the free APDA Symptom Tracker mobile app today.
For your Android | For your iPhone
Smart Patients Parkinson’s Disease Community
In partnership with APDA. The online peer-to-peer support of the Smart Patients Parkinson’s Disease community complements APDA’s resources, which provides outstanding patient services and educational programs, elevates public awareness about the disease, and supports research designed to unlock the mysteries of Parkinson’s disease and ultimately put an end to this disease.
Click here to learn from other patients and share your story.
Here’s something for caregivers . . .
Thank you, Angela, for sharing an email from the Caregiver Action Network’s (CAN). This is not Parkinson-specific but is for ALL caregivers.
• Who Will Pick Up The Slack? about the crisis of care we are experiencing here in the U.S.
• Dementia Caregivers are Tired
• Grief is a Personal Journey
• Help Them (and Yourself) about loneliness
Click here to go to the CAN website and learn more. I like how on the home page, they show different kinds of situations caregivers find themselves in and you can choose the one that fits you.
Free webinar from Parkinson’s Foundation
Expert Briefing: Coping with Dementia for Care Partners
Tuesday, November 5, 2019 from 1:00 – 2:00 p.m
Who: Joseph Quinn, MD, Professor of Neurology and Director of OHSU Parkinson Center and Movement Disorders Program School of Medicine; Director, Portland VAMC Parkinson’s Disease Research, Education and Clinical Center (PADRECC) (Parkinson’s Foundation Center of Excellence)
As a care partner, understanding the signs and symptoms of dementia in Parkinson’s disease can be a challenge. While developing the strategies to optimize the quality of life for a loved one may be your priority, it can become easy to lose sight of your own health and self-care as a care partner.
In this webinar, Dr. Joseph Quinn will focus on the prevalence of cognitive impairment and dementia in PD and provide tips for care partners to address their needs as well.
CEU’s are available for social workers and healthcare professionals.
Click here to register.
Caring for our Caregivers
And speaking of care partners, PSN’s annual caregiver’s appreciation luncheon is filling up fast! Click here for details and to register (scroll down on the page) on our website, or click here to download the flyer and share with your Parkinson family caregiver friends.
You Are Invited To Thriving After 60 University
Saturday, October 12, 2019, 8:00 am – 1:00 pm
Northern Virginia Community College
8333 Little River Turnpike, Annandale, VA 22003
Join Kaiser Permanente for a no-cost, half day event focusing on preparing for retirement. Topics will include Money matters, Aging in place, Downsizing and decluttering (Matt Paxton will be speaker!), Medicare, Social security, and Volunteerism. Click here for more information and to register.
A few seats are still available for this discussion.
Advancements in the Treatment of Parkinson’s Disease: Neurorestoration and Beyond
Thursday, October 10, 2019, 4:00 pm
At: Fairview Park Marriott
3111 Fairview Park Dr., Falls Church, VA 22042
Join the Inova Movement Disorders Center for a discussion about the new treatments for Parkinson’s disease and the future of our field, followed by an extended question & answer session where patients and their families can direct the conversation.
Also come meet our new team members:
Dr. David Whitney, Movement Disorders Specialist (Fair Oaks/Gainesville)
Sonia Gow, Program Manager and Community Outreach (system-wide)
Please RSVP to: firstname.lastname@example.org or call 703-776-3130
I hope this newsletter is helpful and we’ll see you Out & About soon! Our Side by Side support groups will be meeting at Virginia Hospital Center, Carlin Springs location at 10:30 am on Wednesday, October 9. For more details click here. Hope to see you there!