Parkinson Social Network

Parkinson’s Awareness Month continued . . .

Cake courtesy of Old Dominion Home Care

Alexandra and Sonia with tulip cookiesThis Week at our Cafes
We were at two of our cafes this week – Alexandria and Fairfax. This being Parkinson’s Awareness Month, we’ve been talking about . . . Parkinson’s awareness. I’ve appreciated hearing how people first learned about Parkinson’s. We also discussed why we need Parkinson’s Awareness month, as well as how we can raise awareness. Hearing your stories, thoughts and suggestions will help us to plan our education and advocacy programs. Keep those comments coming!

Our thanks to Old Dominion Home Care for bringing us special sweet treats for Parkinson’s Awareness Month! Alexandra brought these lovely tulip cookies to Cafe Alexandria, and Lauren brought a beautiful cake to Cafe Fairfax.

During our conversation at Cafe Alexandria we talked about nutrition and books about Parkinson’s and I said I would send links for people to follow-up. Here goes.
Nutrition – from our blog in January. Click here.
Books – PSN’s For Your Bookshelf page. Click here.

Dr. Rogers answers questions for Women with Parkinson’s group
Last week I wrote about a panel discussion on World Parkinson’s Day with Karl and Angela Robb, and Dr. Drew Falconer. I hope you found it helpful. Dr. Falconer’s colleague, Dr. Sean Rogers, spoke to the Women with Parkinson’s support group earlier this month.
Dr. Rogers answered questions about:
–  unevenness of meds and the unpredictability of symptoms
–  pain and Parkinson’s
–  overactive bladder and sleep issues, sleep hygiene, and sleep studies
–  Nilotinib and the drug trial being conducted by Dr. Pagan at Georgetown
–  non-motor symptoms, including ankle swelling, eye tremors, flushing, blood pressure, and the GI tract
This women’s group is fortunate to have a lady who writes marvelous summaries of their meetings, and we have permission to share her summary of Dr. Rogers’ visit with you.
Click here to read his answers. And thank you to the Women with Parkinson’s group for sharing! Click here to check out their website.
Click here to check out the Inova Movement Disorders Program website.

Correction
There was a link that wasn’t working in last week’s Out & About. I’ve corrected it, so it should work now – It’s the “click here” link.
Last year, Dr. John Dresely, O.D. FCOVD visited a couple of our cafes to talk about Parkinson’s Disease: Effect on Vision. Click here for a summary of his talk.

What’s happening next week?

Monday, April 22 and Friday, April 26, from 11:00 am – 2:00 pm
Outreach to raise awareness at Fair Oaks Hospital
Next week, we’ll be raising awareness and sharing information about Parkinson’s with people passing through the front lobby at Fair Oaks Hospital. We’d love to see you there, either to give us a hand or just stop by and say hi! Will you join us? (Click here for details)

Wednesday, April 24 from 11:00 am – 1:00 pm (light lunch)
Cafe Ashburn **Please note our new location!**
Waltonwood at Ashburn
44141 Russell Branch Pkwy, Ashburn, VA 20147

Saturday, April 27 from 1:00 pm – 5:00 pm
Pints for Parkinson’s
Tysons Biergarten
8346 Leesburg Pike, Tysons Corner, Virginia 22182

For more details click here. . . Hope to see you Out & About next week!
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

A Journey of Living Well with Parkinson’s

Side by Side support groups

Our first Side by Side support groups in Arlington met this week. I want to thank Cathy at Virginia Hospital Center’s Carlin Springs location for offering us this wonderful venue for our new groups. Also, a BIG thank you to Alexandra from Old Dominion Home care for providing munchies and the amazing folding vases with tulips we all received in honor of Parkinson’s Awareness Month. Last but definitely not least, thank you to everyone who helped put this together and spread the word about it!

We first met all together, then split into two groups – caregivers and people with Parkinson’s. We talked about what we would like to do, and agreed that we will have speakers sometimes, but people also wanted plenty of time to chat with each other. We are creating a list of speakers based on people who have offered to visit us, and others we would like to hear from. It was good to hear about the many ways people are staying active, and we learned about some of the opportunities available locally.

What happens (and is talked about) in support groups stays in support groups, but I can share some of the resources with you. This month, one of the things we talked about was vision and I said I would send out a couple of resources:
1)  The first one is a video/webcast from the (national) Parkinson’s Foundation on Seeing Clearly with Parkinson’s: Vision Changes from their Expert Briefing series. Click here to view.
2)  Last year, Dr. John Dresely, O.D. FCOVD visited a couple of our cafes to talk about Parkinson’s Disease: Effect on Vision. Click here for a summary of his talk.

A Journey of Living Well with Parkinson’s

On World Parkinson’s Day, April 11, Karl and Angela Robb joined Dr. Drew Falconer to speak about living with Parkinson’s.
Dr. Falconer spoke from his perspective as a Movement Disorder Specialist and how he can help people with Parkinson’s live the life they want to live by managing their symptoms with medications and other treatments.
Karl Robb’s perspective is as a person living with Parkinson’s for over 30 years. He is active physically by boxing 3 times a week, and active mentally as a Parkinson’s advocate, author, speaker, inventor, photographer, and much more.
Angela Robb, Karl’s wife, spoke from her perspective as a carepartner. She is also an author, speaker and advocate, and much more!

The discussion went back and forth between the 3 speakers and the audience so to keep things in some sort of order, I’ve divided their stories and suggestions by person as well as by topic. I hope you find it helpful.

Karl – Person Living with Parkinson’s
The first symptom Karl experienced was a twitch in his foot when he was 17 years old. He saw 9 doctors in 6 years before receiving his diagnosis. In a way, finally having a diagnosis of Parkinson’s was a relief because it was not something that was fatal.
Karl suggests that if you’re living with Parkinson’s – don’t fight it, work with it. Stay social by joining support groups, cafes, and exercise classes, and find what works for you. Be aware of how stress, sleep, diet and mood can all affect how you live with Parkinson’s. Keeping a journal can be helpful to remember things you want to share with your neurologist.
Parkinson’s gives him purpose and he listed the many things he appreciates about his life – his partner (Angela), family, friends, exercise, meditation, and more . . .

Gina, our hostess at Tall Oaks, commented how positive Karl and Angela are, and how they always leave people feeling more upbeat than when they first met with them. There are many of us in the Parkinson’s community who would definitely agree with her!

Drew Falconer, MD – Inova Movement Disorder Specialist
A Movement Disorder Specialist is someone who first completes their 4 year training as a neurologist, then trains an additional 2 years as a fellow to specialize in Parkinson’s. He talked about the gulf between how doctors should treat people and how they actually do it.

Medications
Sinemet (carbidopa/levodopa) was invented in 1968, and until 2000 was the only medication available. When taking Sinemet, peak effectiveness (“on” period) occurs after about one hour, and then is out of the system in about three hours (“off’). It used to be that patients were advised to wait before they were prescribed it because it generally lasts only 5-6 years. Only 3-5% gets to the brain because the blood/brain barrier is strong. Most of the pill doesn’t get absorbed by gut because there’s a lot of competition in the gut. Parkinson’s is a deficiency of dopamine in the brain. The ideal is to fix the deficiency in a smooth predictable way, all the time.
Taking Sinemet can mean taking doses 4 times a day. With new formulations it can mean reducing frequency to 3 times a day. Patients can now take advantage of medications that weren’t available 15 years ago.
A shockingly high percentage of people in studies feel better on placebos. If you believe a medication won’t work, it won’t because the brain is so powerful.

Deep Brain Stimulation (DBS)
FDA first approved DBS for essential tremor in 1995. It runs the rhythm of the brain instead of the heart. It is an electrical problem treated with electrical therapy – programmed by the doctor.
Because it works at the source – the brain – medications can be reduced by 60-80%.
Anyone with cognitive issues or any uncontrolled psychiatric illness is not a good candidate.
The only requirement is that the patient has experienced symptoms for 4 years. Age is no longer an issue – Dr. Falconer’s oldest patient is 86 years old.
Risks: 1% experience some type of bleed. Only 1 patient out of 180 of Inova MDS patients experienced infection, possibly because of lifestyle choices made that were not recommended.
Until 2017, Medtronic was the only manufacturer for the device. Now St. Jude, Boston Scientific manufacture devices and there have been no issues with breakage and slippage.
Rechargeable batteries are not recommended because after 6 months to 1 year of recharging every few days, the patient may have to recharge for one hour/day. Non-rechargeable batteries should last 5-7 years, and are changed in a 30 minute outpatient procedure.
Improvements as a result of DBS are that it can reduce medication dosages by 80%, and make the tremor go away (Parkinson’s and essential tremor, too). Speech & balance issues can be helped with proper programming. It can also reduce depression.
Focused ultrasound is lesioning, and permanent. Michael J Fox had it done years ago. It can only be done on one side of the brain.

Visits with a neurologist
Dr. Falconer will ask his patients, “What is holding you back from living your life?” His first question when a patient visits is, “Have you done anything fun since your last appointment?”
He suggests that people think about what they want to do with their lives – find what makes you happy. Tell your doctor what is bothering you, rather than relying on what the doctor thinks is bothering you.
Don’t be afraid to get a second opinion because another doctor can provide a different perspective.
A doctor shouldn’t just talk to the patient – the discussion should include the caregiver, too.

Inova Movement Disorder Specialists (MDS)
Inova does not have a policy allowing patient to record visit with doctor.
Dr. Falconer will respond to emails and phone calls from patients.
While the Inova MDS may see 14-18 patients in a day, other neurologists may see 20-25 patients in a day.
There is a team at each INOVA MDS center that includes the Movement Disorder Specialists, a nurse navigator, therapy featuring LSVT BIG and LOUD programs, inhouse geriatrics, psychology, neurosurgery, and more.
Two new doctors will be joining the Inova MDS program, and new offices at Fair Oaks & Gainesville are opening soon.
Dr. Falconer recommends exercise and physical therapy. When someone doesn’t exercise, they can require more medications (40%!) and it’s easier to become wheelchair-bound.

Angela, Carepartner
Angela talked about how carepartners or caregivers need to be proactive, and be part of a healthcare team. Angela often says, “Self-care isn’t selfish”. She takes care of herself by going to the gym in addition to reiki and meditation. She commented how she felt an improvement from going to the gym. Her advice? Don’t stop living your life, and push yourself in exercise.

While the panel was talking about how Parkinson’s is unique to each individual, Amy who was sitting next to me, said that people with Parkinson’s are like snowflakes. I hadn’t heard it put that way before but I liked the comparison. What do you think?

Hope to see you Out & About soon! We have two cafes this week in Alexandria and Fairfax. Both cafes will have special goodies provided by Old Dominion Home Care in honor of Parkinson’s Awareness Month. Will we see you there?

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Life Changing Bread

New Roots Life Changing Loaf of Bread

New Roots Life Changing Loaf of Bread (for constipation)
This recipe is for a whole-grain, gluten-free, no-knead, no-mess, life-changing loaf of bread. (see photo above) Thank you Mary, for sharing with us! It is made of nuts and seeds, rolled oats, salt, maple syrup and coconut oil. Easy to make, and I was assured that it is more effective than any of the usual recommendations for constipation. If you try it, can you please let me know what you think of it and it’s effectiveness?
Click here for the recipe.

Outreach at Virginia Hospital Center – April 1
Thank you to everyone who joined us at Virginia Hosptial Center (main hospital) for our first outreach this month! We met with staff, patients, and visitors, as they stopped by our table on the way to and from the cafeteria. We shared information about Parkinson’s, and Parkinson Social Network, including our new Side by Side support groups. It was also fun to catch up with friends.

We will have two more outreach events:
at Fair Oaks Hospital
on Monday, April 22 and Friday, April 26, from 11:00 – 2:00 pm.
Once again, we’ll be outside the cafeteria – just inside the main entrance. Free valet parking is available.
If you’d like to help out, please contact me. Even if you can only stay for part of the time, that’s ok! By sharing your experiences, and listening to others you’ll help them feel less alone.

April is . . . Parkinson’s Awareness Month!
Check out what’s happening in Northern Virginia this month as we raise awareness.
Click here for more info.

Hope to see you Out & About in April!
Next week we’ll be at our new Side by Side support groups in Arlington. On World Parkinson Day – April 11 – we’ll be at Tall Oaks assisted living to hear Karl and Angela Robb, and Dr. Drew Falconer. Will we see you there? (click here for more info)

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Check out what’s happening in Northern Virginia for Parkinson’s Awareness Month!

April is Parkinson's Awareness Month

PSN will be out and about in the community
raising awareness, learning from others,
and catching up with friends.
Hope you can join us!

Please help us with planning
and click on the links to RSVP for the events you’d like to attend.
Family and friends are welcome to join us, too!

PSN Outreach event at Virginia Hospital Center
Monday, April 1 – no joke!!
 

11:00 am – 2:00 pm
Virginia Hospital Center – main hospital, outside the cafeteria
1701 N George Mason Drive, Arlington, VA 22205
We’ll raise awareness about Parkinson’s by sharing information about Parkinson’s and local resources. At previous outreach events we’ve reached out to families touched by Parkinson’s to let them know they are not alone, and educated medical professionals so they have a better understanding of Parkinson’s and can provide better care.
I hope you can join us! Even if it’s for only part of the time – sharing your stories, and listening to others can really make a difference in someone’s life.
Contact Sonia at Sonia@ParkinsonSocialNetwork.org for more information.


Side by Side Support Groups
– Wednesday, April 10

For those with Parkinson’s and those who care . . .
10:30 am – 12:30 pm
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!
To help us with planning, please let us know if you’d like to attend.
Click here to RSVP or email Sonia@ParkinsonSocialNetwork.org


A Journey of Living Well with Parkinson’s
Thursday, April 11 – World Parkinson’s Day!

6:00 pm – 7:30 pm
At: Tall Oaks Assisted Living
12052 N Shore Drive, Reston, VA 20190
Presented by Karl and Angela Robb, author of A Soft Voice in a Noisy World who has lived with Parkinson’s disease for thirty years, and his wife/carepartner, respectively; and Dr. Falconer, co-director of the Movement Disorder Program, INOVA Hospital.
Join us as Karl shares his positive attitude about living with Parkinson’s, and learn about the latest medical advancements from Dr. Falconer.
Free and open to the public. Light refreshments served.
Call 703-834-9800 or email RSVP@talloaksal.com. www.TallOaksAL.com


Cafe Alexandria – Monday, April 15

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
(703) 940-3300

DIRECTIONS
This is a brand new building on a new street so if your GPS doesn’t recognize the Cardinal Place address try:
450 South Pickett Street, Alexandria alternate map for GPS
PARKING is underground and accessible from the back of the building.


Cafe Fairfax – Wednesday, April 17

10:00 am to 12 noon (coffee & donuts – click here to RSVP)
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
(703) 204-4664

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
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.
You can sign up hereor 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.


Cafe Ashburn – Wednesday, April 24

11:00 am to 1:00 pm (light lunch – click here to RSVP)
4th Wednesday of each month at:
**NEW LOCATION!** as of April 2019
Waltonwood at Ashburn
44141 Russell Branch Pkwy, Ashburn, VA 20147 map
It’s not far from our previous location – about 2 minutes more down the road.
Call (571) 266-1810 for directions.


PSN Outreach event at Fair Oaks Hospital
– Monday, April 22 & Friday, April 26

11:00 am – 2:00 pm
Fair Oaks Hospital, in the main lobby, in front of the cafeteria
3600 Joseph Siewick Dr, Fairfax, VA 22033
Free valet parking!
We’ll raise awareness about Parkinson’s by sharing information about Parkinson’s and local resources. At previous outreach events we’ve reached out to families touched by Parkinson’s to let them know they are not alone, and educated medical professionals so they have a better understanding of Parkinson’s and can provide better care.
I hope you can join us! Even if it’s for only part of the time – sharing your stories, and listening to others can really make a difference in someone’s life.
Contact Sonia at Sonia@ParkinsonSocialNetwork.org for more information.


Pints for Parkinson'sPints for Parkinson’s – Saturday, April 27

1:00 pm – 5:00 pm
At: Tysons Biergarten
8346 Leesburg Pike, Tysons Corner, Virginia
This event is hosted by Alec Langstein and Rock Steady Boxing NOVA
Come support family and friends, grab a beer, and help fight back against Parkinson’s disease. All donations and percentage of sales will be given to the local non-profit Parkinson Social Network who is committed to bringing together the Parkinson’s community of Northern Virginia to inform, inspire and unify those living with Parkinson’s.
Online Donations:
– You can donate online at www.gofundme.com/pintsforparkinsons2019
Parking:
– PLEASE read the parking information on the Tysons Biergarten website – www.tysonsbiergarten.com. There is free parking with validation in the parking garage next door!

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