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.
Articles included:
• 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: marie.bermudez@inova.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!
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
website: www.ParkinsonSocialNetwork.org
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All underlined words and phrases are links for email or websites.
Parts of Out & About will be posted on our blog or community events pages.
There's also an archive for previous newsletters here.
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Our events in October
Please help us with planning
and click on the links to RSVP for the events you'd like to attend
or send an email to Sonia@ParkinsonSocialNetwork.org.
Family and friends are welcome to join us, too! |
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Side by Side Support Groups -
Wednesday, October 9
For those with Parkinson’s and those who care . . .
10:30 am - 12:30 pm (light refreshments/potluck* - click here to RSVP)
2nd Wednesday of each month at
Virginia Hospital Center, Urgent Care - Carlin Springs
601 S Carlin Springs Rd, Arlington, VA 22204
Enter via the Urgent Care Center entrance, turn right into the Wellness Room
A new kind of support group in Northern Virginia!
Two support groups, each in their own space next to each other.
1) For caregivers – to share and learn from each other
2) For people with Parkinson’s – to engage in group activities and share with each other.
Free and all are welcome!
*If you'd like to bring munchies to share, they will definitely be appreciated!
To help us with planning, please let us know if you’d like to attend.
Click here to RSVP or email Sonia@ParkinsonSocialNetwork.org
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Cafe Fairfax - Wednesday, October 16
10:00 am to 12 noon (coffee & donuts - click here to RSVP)
Our visitor this month will be Courtney Arroyo
Emergency Management Specialist, Planning and Policy Analysis Division, and Access and Functional Needs Integration Liaison with the Fairfax County Office of Emergency Management. Courtney visited us last December and has a wealth of information about how to prepare for emergencies.
3rd Wednesday of each month at:
Insight Memory Care Center,
Linda and Lou Mazawey Education & Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030 map
Call (703) 204-4664 for directions.
DIRECTIONS:
From Waples Mill Road turn onto Pender Drive.
Then turn right at the 2nd driveway;
head straight back,
the road will curve around to the left and 3955 will be on your left.
But wait! There's more!
Classes for Caregivers follow Cafe Fairfax from 1:00 pm - 3:00 pm
- Topic for October: Understanding Care Options
- Dementia care is not one size fits all. Each person, each stage, and each family is unique. Come and learn about multiple care options to plan and evaluate what is right for your family.
We are welcome to stay at Insight after the cafe, and participate in this program that is specifically designed to assist family caregivers.
All sessions are FREE, and respite care may be available by request; please notify us when registering to confirm availability.
To register, contact Lindsey Vajpeyi at lindsey.vajpeyi@insightmcc.org or 703-204-4664.
Click here to check out Insight's events calendar for details about their other classes, workshops, support groups, and social events.
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Cafe Alexandria - Monday, October 21
11:00 am to 1:00 pm (light lunch - click here to RSVP )
3rd Monday of each month at:
Brandywine Living at Alexandria
5550 Cardinal Place, Alexandria, VA 22304 map
Call (703) 940-3300 for directions.
PARKING is underground and accessible from the back of the building.
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Cafe Ashburn - Wednesday, October 23
11:00 am to 1:00 pm (light lunch - click here to RSVP)
We are doing something quite different this month!
Dr. David Whitney, the new Movement Disorder Specialist with Inova will be speaking to a local networking group, the Loudoun Senior Interest Network or LSIN. You may be familiar with LSIN if you picked up their directory at one of our cafes. We are welcome to join LSIN to hear Dr. Whitney speak and enjoy a delicious lunch. You'll also have the opportunity to meet representatives from various local businesses that provide services and resources for long term care.
I hope you can join us but it is imperative that you RSVP for this event - please!
I need to get numbers to the staff at Waltonwood because as you can imagine this will be a large event for their kitchen to cater for. If you have any questions about this event or Dr. Whitney, please contact me at Sonia@ParkinsonSocialNetwork.org and I'm happy to help.
4th Wednesday of each month at:
Waltonwood at Ashburn
44141 Russell Branch Pkwy, Ashburn, VA 20147 map
Call (571) 266-1810 for directions.
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At our cafés we help each other
to make the most of life with Parkinson's.
We welcome anyone living with Parkinson's and related movement disorders, as well as family and friends. You'll find more information about our cafes on our Cafes page.
Come for the coffee, stay for the company and conversation!
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Our events in November
Please help us with planning
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Saturday, November 9, 10:30 am - 1:30 pm
Caring for our Caregivers ~
PSN's 2nd Annual Caregiver Appreciation Luncheon
Our PSN Board of Directors is well into planning this special event for our caregivers. We would love your help and feedback to make this another happy event for caregivers. Please mark the date on your calendar, and drop me a line if you'd like to help!
At: Insight Memory Care Center (the main building)
3953 Pender Drive, Fairfax, VA 22030
In recognition of National Family Caregivers Month Parkinson Social Network is honoring family caregivers in our Parkinson’s community. You are invited to our second annual caregiver appreciation luncheon to relax, refresh and enjoy!
Featuring door prizes, coffee and donuts, and buffet luncheon.
Our keynote speaker will be Martha Brettschneider . . .
Mindfulness teacher, speaker, writer, and photographer, with a passion for inspiring and supporting mindful living.
If you need someone to care for your significant other, we have arranged activities and lunch in an adjacent room. To make arrangements for care, please register by Friday, October 25, 2019.
Please help us to make this a Very Special Event and register by Friday, October 25. Limited seating for this event, so don’t delay!
Questions? Please contact Sonia at Sonia@ParkinsonSocialNetwork.org or 571-286-5000. To register, please go to our website: https://parkinsonsocialnetwork.org/caring-for-our-caregivers
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With your contribution we can continue to educate, advocate, support and enrich the lives of those touched by Parkinson's disease.
Click here or on the button below to . . .
Parkinson Social Network
is registered as a 501(c)(3) non-profit organization. |
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The inclusion of announcements, logos or website links on this site does not constitute an endorsement by the Parkinson Social Network of the products, programs or services we include in our newsletters or on our website.
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