Parkinson Social Network

The Staircase Illusion

staircase illusion

No, it’s not a magic trick. The photo above is of a design solution for people with Parkinson’s to help them walk better. Click here to watch the TEDx video. More information on their website at http://staircaseillusion.weebly.com/. Thank you Jim for sharing this with us!


News from Insight Memory Care Center (IMCC)
Caregiving at a Glance
Caregiving at a Glance is IMCC’s fingertip guide for families caring for a loved one with Alzheimer’s. Techniques and strategies to empower caregivers address topics such as: troublesome behaviors, communication, eating, bathing and more. The new updated 5th edition is now available. Click here for details!

Insight’s 8th Annual Paintings and Pairings event
Save the Date! Thursday, October 17, 2019
www.insightmcc.org/paintings

Sentimental Journey Singers
Beginning Monday, September 9 from 9:30 to 11:00 am
At: Insight Memory Care Center
3953 Pender Drive, Suite 100, Fairfax
A chorus for those diagnosed with early or beginning moderate Alzheimer’s and other memory impairments. Encore hopes to see all interested individuals at the
Sentimental Journey Singers Open House
on Monday, July 15 from 9:30 to 11:00 am.
Please call the Encore office at 301-261-5747 to reserve space for the singer and care partner.
Click here for more information!


Fairfax County Community Resources for Older Adults 101
Thursday, June 6, 2019 | 7:00 to 8:30 pm

At: Chesterbrook Residences
2030 Westmoreland Street, Falls Church, VA 22043
Special Guest Speaker: Karen Hannigan, LCSW, supervisor at Fairfax County Services for Older Adults in the Adult and Aging, Disability and Caregiver Resources Unit, will discuss helpful county resources. She has over 25 years of experience working with older adults in various county governments, including as an Adult Services worker and Adult Protective Services Investigator. Many services are available right here in our area. Learn more about what is available and who to call for help, including: Commonwealth Coordinated Care Program, Respite Program, ElderLink and more. You are not alone!
JSSA monthly caregiver support group special event.
RSVP appreciated: Rita Evrony, LCSW 703-896-7910 or revrony@jssa.org

Nutrition update
I’ve updated our website page on Nutrition (click here) with Part 3 of the APDA series I mentioned a couple of weeks ago, and a new guide on Diet and Parkinson’s by the Michael J Fox Foundation.

Every Victory Counts Manual
Published by the Davis Phinney Foundation for Parkinson’s, Every Victory Counts is written by leading movement disorder specialists, Monique Giroux, MD and Sierra Farris, PA-C, MPAS, and a wide range of additional experts in Parkinson’s wellness from respected institutions in the US, Canada and Europe. This comprehensive resource gives you the tools and the confidence to take control and start living well today. Click here to learn how you can order your copy.

Cafe Fairfax – May 15
We had a busy time this month with 3 visitors! Grace Lynch and Jim Person talked about podcasts, referring to Grace’s excellent PowerPoint. I’ve created a new page under Resources on our website for podcasts and webinars (click here) where you can see a list of podcasts that we’re compiling, and also download Grace’s PowerPoint. If you tune into podcasts about Parkinson’s please share them by sending your favorites to Sonia@ParkinsonSocialNetwork.org.

Hope to see you Out & About soon! Will we see you at Cafe Alexandria (today) or Cafe Ashburn on Wednesday?

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Understanding and Patience

non verbal does not mean . . .

I hope this doesn’t sound like a lecture and you’re wondering what prompted this? But when I read it, I thought of our friends living with Parkinson’s and how they’ve talked about how frustrating interactions with some people can be. I came across this graphic thanks to a post on Facebook by the Cerebral Palsy Society of New Zealand, but I felt that it applies to people living with Parkinson’s, too.

Sometimes our friends can be slow to respond and are considered non-verbal. Sometimes their facial expressions don’t show how they are feeling the way they used to.

People living with Parkinson’s still think, hear, understand and feel. To this message of “Let’s practice non ignorance” I would add “Let’s practice patience”.


The young lady who shared the above graphic is a speech language pathologist who also lives with Crohn’s disease. She has often shared posts about how frustrating it can be when people don’t believe she’s ill because she doesn’t look like she is. I know this happens with people living with Parkinson’s, too, particularly with young onset. I don’t know how many times I’ve heard someone say, “He/She doesn’t look like they have Parkinson’s!”

Which brings me to an article I read this week through Parkinson’s Life out of Europe – “There’s a stigma that if you don’t ‘look sick’ then there is nothing wrong”. I imagine quite a few of our readers can relate to what the author has to say.
** The author mentions that she started a Facebook group called StrongHer: Women Fighting Parkinson’s. There are over 1,100 women worldwide in this community of support.


Here’s an event that looks like fun and features the chef from Brandywine Assisted Living – our hosts for Cafe Alexandria.
Senior Health & Fitness Fair – Alexandria
Wednesday, May 29, 9:30 am – 12 Noon,

At: The Lee Center,
1108 Jefferson Street, Alexandria
This annual Health and Fitness Fair is sponsored by the City’s Successful Aging Committee and will feature a discussion from Inova Alexandria Hospital about how to maintain a healthy weight as we age, and good nutrition tips. Breakout sessions follow with a cooking demonstration from Brandywine Assisted Living’s chef; healthy screening for blood pressure and glaucoma as well as fitness programs including tai-chi. This popular event is a lot of fun. It is free with light refreshments. RSVP online at senior health fair or call 703-836-4414, ext. 110.  Click here for their event flyer.

Cafe Fairfax is really hopping this week!
Grace Lynch from Fairfax County has been so helpful in getting the word out about our Parkinson Social Network and our events. She will be visiting us with Jim Person to help us understand how we can access the many podcasts and webinars that we can use to learn about all kinds of things from the comfort of our homes. We will also be visited by Mike Harrigan and participate in brain and body activities.

Hope to see you Out & About soon! Will we see you at Cafe Fairfax?

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

More on Nutrition for People Living with Parkinson’s

good food

If you’ve noticed that your Out & About is a couple of days later than usual, that’s because it is! With more interesting things to share with you, I thought I’d aim to send it to you on Sunday/Monday.

I’m frequently asked if I know a local nutritionist who specializes in Parkinson’s to speak to groups. I don’t, but lately I’ve had lots of good information from experts in Parkinson’s and nutrition from around the world. We’ve created a webpage at https://parkinsonsocialnetwork.org/nutrition to put all this all in one place.

Thank you to Diane Sherman, editor of the Dartmouth-Hitchcock Parkinson’s Newsletter for today’s nutrition information! You’ll find information from 2 sources.


From the American Parkinson’s Disease Association (APDA)
From Dr. Rebecca Gilbert, APDA Vice President and Chief Scientific officer: “The role of nutrition – food and supplements – in the management of Parkinson’s disease”
Click here to read Part One of Dr. Gilbert’s blog: “What we know about avoiding particular foods & supplements for Parkinson’s.”

Click here to read Part Two of Dr. Gilbert’s blog: “What we know (and don’t know) about taking particular foods & supplements for PD.”

(Part Three of Dr. Gilbert’s blog, “What we know and don’t know about adhering to particular diets,” will be posted soon.)


Diane found the following information on the Parkinson Voice Project website.
*To download a printable version of the info below: Click here.

Nutritional Guidelines for People with PD
By Susan Imke, Family Nurse Practitioner (FNP), Certified Gerontological Nurse Practitioner (GNP-C), Senior Health Solutions, 2018

• Parkinson disease (PD) slows gastric motility.
Chewing and swallowing are prolonged; stomach emptying is delayed, and food moves through the intestines more slowly than in someone who does not have PD.  Nutrients are better absorbed when small amounts are eaten frequently rather than three large meals per day.

• Most patients get more benefit from levodopa when taken on an empty stomach.
A tablet, taken prior to eating (even 15 minutes is beneficial) with 4-5 oz. non-dairy liquid, is “washed” through the stomach, into the small intestine where absorption  begins. Think of it as allowing levodopa a “head start” on absorption over the food about to be consumed.

• If levodopa causes nausea,
a small cracker or bite of fruit can be taken with doses required between meals. Pretzels are excellent, since they require no refrigeration. Crystallized ginger can be nibbled to offset nausea.

• Some people with PD get benefit from altering the amount or timing of protein intake to avoid interfering with levodopa absorption.
These are typically patients who experience significant on/off motor fluctuations and may take levodopa four or more times per day. To verify if protein is interfering with your L-dopa absorption, experiment with a vegetarian diet for 3 days to determine whether levodopa effect and motor function is significantly improved.

• Weight maintenance
can become a problem for some people who have PD. Frequent, small meals can help maintain optimal weight. Sometimes patients or caregivers are so diligent in limiting fat intake and worrying about protein restrictions, that they deprive themselves of much needed calories.

• Many dietitians recommend augmenting dietary intake with a daily vitamin and mineral supplement
as a nutritional “insurance policy”. Do not choose a mega-dose formula. Always take supplements with food.

Tip: Our natural sense of thirst diminishes with age.
Antiparkinson drugs also dry out the body.  It is important to drink water “by the clock”, as precisely as you take your medications. This allows better absorption of nutrients from foods as well as medications and reduces the risk of dehydration.

Hope to see you Out & About soon! Next week we have our Side by Side support groups in Arlington. Will we see you there? More information on our Side by Side web page.

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

As Parkinson’s Awareness Month comes to a close

April is Parkinson's Awareness Month

I’d like to thank . . .
As Parkinson’s Awareness Month comes to a close, I’d like to thank everyone who:
– invited us to speak, and share what we’ve learned about life with Parkinson’s
– hosted our outreach events
– volunteered and helped us at our outreach events
– attended our cafes this month, and shared their stories and thoughts on Parkinson’s awareness
– attended our new Side by Side support groups
– contacted us for information about connecting with other people in our Parkinson community
– organized, (Alec at Rock Steady Boxing!) and joined us for our Pints for Parkinson’s fundraiser
– generously donated to our Parkinson Social Network
And a BIG thank you to our amazing Parkinson Social Network board members for everything they do to continue our mission to educate, advocate, support and enrich the lives of those touched by Parkinson’s disease.

Last week was super busy and we were definitely Out & About
It was the last full week of April, and Parkinson’s Awareness month.
Monday, April 22 – We were at Fair Oaks Hospital with our table in the front lobby and in front of the cafe. We provided information about Parkinson’s and local resources to people walking by, including patients, visitors and staff.
Tuesday, April 23 – Karl and Angela Robb spoke to the staff at Homewatch Care Givers of Loudoun, and shared what they’ve learned about living with Parkinson’s. No matter how many times I hear them speak, I always learn something new!
Wednesday, April 24 – We met at our new location for Cafe Ashburn! And chatted about when we first learned about Parkinson’s and the need for Parkinson’s awareness.
We had a visitor from the Loudoun Area Agency on Aging, and another from a brain and body fitness program called Braining.
Katy Eurich, who is organizing our new Movement to Music class in Reston visited us as well and caught up with friends who know her from another class she’s taught. If you’re interested in her new Parkinson’s class, please contact me because we’re working on finalizing the timing for this class.
Friday, April 25 – Back again at Fair Oaks Hospital for our outreach program. At both of our outreach events this week we were joined by Speech Language Pathologists Caitlyn Lee (on Monday) and Jill Fitzgerald (on Friday), from the Inova Rehabilitation Services. We really appreciate their help, and enjoyed chatting with their patients.
Saturday, April 26 – Fair Oaks Parkinson’s support group enjoyed their annual brunch thanks to our hosts at the Sunrise at Fair Oaks!
In the afternoon, we headed on over to Tyson’s Biergarten for a wonderful fundraising event, Pints for Parkinson’s, organized by Alec Langstein, our special friend at Rock Steady Boxing Nova! Our thanks to everyone who joined us as well as everyone who supported us with their donations.
If you’d like to donate, it’s never too late!
Click here to support your Parkinson Social Network.

Nutrition for Parkinson’s
Last week on Karl Robb’s blog, A Soft Voice in a Noisy World, Karl posted his interview with Kathrynne Holden. Kathrynne is a well-known expert on nutrition and Parkinson’s and I’m delighted to share this interview with you. Thank you, Karl! Click here to read more.

Celebrate Lifelong Learning through the Arts!
All through the month of May

Adults 50 and over from all across Fairfax County are joining in a month-long celebration of the visual, literary and performing arts. Come and enjoy a variety of activities – including performances, demonstrations and interactive classes involving writing, drawing, painting, crafting, music and dance.
Click here for a complete events calendar and more information.

Insight Memory Care Center’s 35th Celebration!
Wednesday, June 5 from 4:00 pm – 6:00 pm
At: Insight Memory Care Center
3953 Pender Drive, Suite 100, Fairfax, VA 22030
Do you remember where you were in 1984? Did it involve a lot of big hair and shoulder pads? Or maybe we’d find you at the roller rink or the arcade?
Insight was just starting in 1984. You could find them in a church basement, offering respite services for families living with memory impairment. Caregivers came for support group, and they quickly added five days a week of respite care. Lin Simon, Insight’s founder, was motivated by her passion, knowledge, and supportive friends and community. She didn’t turn anyone away that came for assistance.
Now in 2019 Insight is celebrating 35 years of care and support! No longer in the basement, they’ve been through several moves as they expanded their space and services to serve more in need. Insight now opens their doors to thousands of caregivers and families each year!
Our friends at Insight hope you’ll join them to celebrate! They’ll take a look back at where they’ve been, as they look forward to an exciting future providing care, education, and support for families living with dementia in our community.
I’d like to add that our friends at Insight have supported our Parkinson Social Network from the very beginning when it was just an idea. They host our Café Fairfax – 3 years in June! – and other events. Their educational events are top notch and we are always welcome to attend. I hope you can join in on this celebration to learn more about what they have to offer us, and support them. ~ Sonia
Click here to RSVP.

Dance for PD®’s latest streamed class
Anyone can join these classes from the comfort of their home! This particular class is taught by Janelle Barry. Click here to view and participate in Janelle’s class. There’s a new class available every month, usually with a different teacher, too. To check out their archive and keep on movin’ to the music click here.

Hope to see you Out & About soon!
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

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