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Join us for our September Parkinson Café!

Parkinson Cafe Network

Monday, September 12, from 10:00 am – 12 noon

Insight_logo_bwAt: Insight Memory Care Center
Linda and Lou Mazawey Education and Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030
Directions and map

Directions: From Waples Mill Road, turn right 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.

Come for the coffee, stay for the company and conversation!

Our Parkinson Café is open to people living with Parkinson’s or other related movement disorders such as Lewy Body Dementia. Carepartners, family, and friends are more than welcome, too!

This month we’re introducing the crew from DPI Adaptive Fitness who will demonstrate their Rock Steady Parkinson’s Boxing program. They also offer a variety of other adaptive classes in addition to personal training.

You’re welcome to browse our resource table where you can help yourself to information…

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You’re invited to our August Parkinson Café!

Monday, August 8 from 10:00 am – 12 noon

Insight_logo_bw

At: Insight Memory Care Center
Linda and Lou Mazawey Education and Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030
Directions and map

Directions: From Waples Mill Road, turn right 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.

Come for the coffee, stay for the company and conversation!

We’d love to see you at our “Parkinson Café” – a place where people living with Parkinson’s or other related movement disorders such as Lewy Body Dementia can gather with their carepartners, family, and friends. Relax and enjoy a cup of coffee, donuts and other delicious munchies with old friends and meet new ones. We’ve added a resource table where you can help yourself to information about living with Parkinson’s as well as about some of the many services provided by Fairfax County and local Parkinson-focused businesses.

Our Parkinson Café is free and you’re welcome to bring munchies to share!

Click here to download our August 8 flyer (PDF)

If you’d like to attend, please register below to help us with the planning:

See you on August 8!

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Next Fairfax Parkinson Café is July 11

Parkinson Cafe Network

You’re invited to our Fairfax Parkinson Café!

Monday, July 11 from 10:00 am – 12 noon

Insight_logo_bw

At: Insight Memory Care Center
Linda and Lou Mazawey Education and Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030
Directions and map


Come for the coffee, stay for the company and conversation!

We’re excited to introduce you to the concept of the “Parkinson Café” – a place where people living with Parkinson’s or other related movement disorders such as Lewy Body Dementia can gather with their carepartners, family, and friends. Relax and enjoy a cup of coffee, donuts and other delicious munchies with old friends and meet new ones. Right now, the only one missing is you! Will you join us?

Our Parkinson Café is free and you’re welcome to bring munchies to share!

If you’d like to attend, please register below to help us with the planning:

See you on July…

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You’re invited to our Parkinson Café!

You’re invited to Northern Virginia’s inaugural

Parkinson Café!

Monday, June 13 from 10:00 am – 11:30 am

Insight_logo_bw

At: Insight Memory Care Center
Linda and Lou Mazawey Education and Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030 MAP


Come for the coffee, stay for the company and conversation!

We’re excited to introduce you to the concept of the “Parkinson Café” – a place where people living with Parkinson’s or other related movement disorders such as Lewy Body Dementia can gather with their carepartners, family, and friends. Relax and enjoy a cup of coffee, donuts and other delicious munchies with old friends and meet new ones. Right now, the only one missing is you! Will you join us?

Our Parkinson Café is free!
More Information at ParkinsonCafeNetwork.org

If you’d like to attend, please register below to help us with the planning:

See you on June 13th!

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Appreciating the good stuff

It’s a gorgeous spring day and I’m sitting out in our backyard with my tablet thinking about writing something but nothing’s happening. Not in the writing department anyway. Our two dogs are having a wonderful time checking out their new four-footed neighbors, chasing each other, and just lying in the grass munching on sticks. They seem pretty happy.
Rascal & Sophie

I’m enjoying the gentle breeze, lack of humidity and bugs, and my new wind chime. I’m pretty happy, too. Writing about sickness just doesn’t seem right on a day like today, so I won’t!

Last week I made a change to my exercise classes and we’re now finishing them with sharing something that we feel happy about – either something that has happened, or something that is going to happen. I’d been hearing a lot about depression and anxiety recently and because they both lead to stress, and we all know stress isn’t good for us, I thought it might be helpful to remember the good things that happen in our lives.
If you are depressed, you live in the past. If you are anxious, you live in the future. But, if you are at peace, you live in the present. Lao Tzu

We’ve had a variety of answers to our happy question, from family coming to visit, to good things that happened as a result of something unpleasant (silver lining observations), but this one was in keeping with our theme:
Yesterday is history. Tomorrow is a mystery. Today is a gift, that's why we call it the present.

So far, I think people are enjoying sharing happy things with each other. I’m hoping that in between classes, when they’re feeling down about something they’ll remember the good stuff.
This is a bus stop in Montreal
Patients are people, too!

Are you familiar with the saying, “Don’t sweat the small stuff?”
How about we turn that around by appreciating the good stuff?

 

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At the Forum and on the Hill – A Voice for Parkinson’s

site-header2Last week I met some amazing people, listened to presentations that really had my attention, and learned first-hand about advocating to legislative representatives. I was impressed by how well organized this event was; even more so when you consider how few staff members this organization has. This was my first Parkinson’s Action Network (PAN) forum and I was there to gain a different perspective on patient advocacy for people living with Parkinson’s disease. Previous Parkinson’s conferences I’ve attended were local, and focused on educating people about Parkinson’s as well as some of the medical treatments and local services available to them. This conference was different in that it’s national, but also in that the discussion on medical treatments and technologies went beyond educating us on the basics. We learned of some of the difficulties that are experienced making them available to people living with Parkinson’s and we were encouraged to help speed up the process.

At the Forum

On the first day, after a warm-up by Charlie Cook of the Cook Political Report on the political climate here in Washington, D.C. and his insight on the candidates for the 2016 presidential election, we learned about new technologies:

  • Fox Insight (www.FoxInsight.org), an online study to gather data about patient experiences, both medical and daily living – from the Michael J Fox Foundation
  • developing technologies to improve patient / doctor communications – from Great Lakes Neurotechnologies
  • DaTscan, a new imaging tool for earlier diagnosis – from GE Healthcare
  • issues patients deal with when trying to access new and innovative treatments

I was impressed by how the Michael J Fox Foundation (Fox Insight) study was open to everyone, not just people living with PD, and how it covers life with Parkinson’s not just medical data. On the other hand, I was so very frustrated at the difficulties patients experience in gaining access to necessary medications, particularly the newer ones. Too often patients have to advocate for themselves by being forced to appeal when they are refused access to medications by their health insurance company, or by finding programs and grants to help pay for them. While we can do a lot to stay healthy through our lifestyle choices, I believe we have the right to appropriate medical care when we need it.

On the second day, the presentations were geared toward preparing us for our day on Capitol Hill when we would ask our legislators for their support. We learned why we were asking for members of the House and Senate to:

  • Co-sponsor the Advancing Research for Neurological Disease Act of 2015 (H.R. 292, S. 849)
    Do you know how many people have Parkinson’s? The estimate is between half a million and a million and a half. That’s a pretty big difference, and it’s quite possible that there may be more. This Act will enable the Centers for Disease Control (CDC) to collect the data (much of it already exists) and evaluate it. It can then be used to provide research, treatment, programs and services. Although we were advocating for assistance on behalf of the Parkinson’s community, this act covers other neurological disease such as Alzheimer’s and Multiple Sclerosis. Advocates from the Alzheimer’s Association were also there the same day we were at the Capitol.
  • Reinstate or provide additional funding for:
    ◦ the Department of Defense Parkinson’s research (NETPR) program to identify how Parkinson’s develops and research how to diagnose, prevent and treat it.
    ◦ NIH to facilitate research into Parkinson’s treatments and cures
    ◦ FDA to speed-up the process of approving prescription drugs and make them available to patients sooner rather than later.
  • Join the Congressional Caucus on Parkinson’s disease

We worked in teams with others from our state, and appointments with our House and Senate representatives were arranged for us by PAN staff. In our folders we had information about the representatives, the staff person we would be meeting with and information on the various requests to help us speak knowledgably about them. Our Virginia team was fortunate to include veteran PAN advocates, Karl and Angela Robb, so they could guide us newbies in the planning and process. We decided that each of us would speak to a particular request based on our experiences and reasons for being there. I felt most comfortable speaking about H.R. 292 because I feel that if we know where people living with Parkinson’s are, we could reach out to them and connect them with relevant programs and services.

On the Hill

HillTeam2015On the third day, we were transported to Capitol Hill from our D.C. hotel. The timetable for the buses was coordinated with our appointment schedules. It was a long day, but productive, and we met with staff from the offices of our two U.S Senators as well as three U.S. House Representatives. We began each meeting by explaining that we were speaking for our friends living with Parkinson’s who weren’t able to be there that day. Then each of the six people on our team introduced ourselves, spoke about our particular issue and made our request for support. In response, we were advised about where our Representative stood on the matter, questions were asked and sometimes more information was requested. We took notes so that PAN staff could follow-up. We also exchanged business cards so we could follow-up individually by email, and where possible, had our photo taken with the person we spoke to so we could post it on social media. The power of images!

My thanks go out to the staff at PAN (in particular Hayley and Jennifer!) for organizing this informative and inspiring event, and congratulations on a job well done!

Patients are people, too!
I’m curious to see what happens as a result of our advocacy. I’ve never done this sort of thing before – met with or written to a politician to make a request – and I was surprised at how easy it was. I’ve been assured that the more they hear from us, the better chance we have of getting and keeping our representatives’ attention so they will take action. If you’d like to give it a try, you can find out more about the Parkinson’s Action Network and the issues they are working on through their website, http://parkinsonsaction.org.

I realize that not everyone shares my interest in Parkinson’s, but after reading this article about what we learned and did, I hope that you’ll be inspired to find out how you can take action for a cause that is important to you. For instance, if your interest is in Alzheimer’s disease, you can find information about their advocacy forum here: http://www.alz.org/forum/overview.asp.

Speak up! The more our politicians hear from us, the better chance we have of being heard. Excuse me . . . I have some follow-up letters to write!

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My Favorite Champion

11102777_10153169286227298_4804578068459501625_nIt’s not every day that I can share the exciting news that someone I know is being honored by the White House, but on March 23, 2015, nine men and women were recognized as Champions of Change for Parkinson’s disease. Among them was my friend, Angela Robb, whose morning in the White House spotlight was in recognition of her efforts as an advocate for care partners.

One of the first things I learned when I became involved with my local Parkinson’s organization was to not refer to people as Parkinson patients because Parkinson’s is only a part of who they are. Instead we say that someone lives with the disease. Angela’s husband Karl lives with Parkinson’s disease but the reality is that they both do, and they will tell you that they are care partners for each other. Karl was aware of Parkinson’s symptoms at 17 but it took 6 years and 9 doctors for him to receive a diagnosis at 23. They met several years after his diagnosis and have been married for 19 years.

Both Angela and Karl are well-known nationally in the Parkinson’s community for their advocacy work. They help people living with Parkinson’s to connect with each other and share their ideas on how to live well with the disease. They also educate the public and government about Parkinson’s; for instance, the need for more research and ultimately a cure. Their involvement ranges from co-leaders for a local support group to being on the board of national Parkinson’s organizations such as the Parkinson’s Action Network. I’ve really only touched on a fraction of what they do.

Anyone who spends time with Angela and Karl will come away feeling upbeat and happy which may sound strange given that they are living with a chronic, progressive disease, but being positive and laughing a lot helps them to live well with it despite its unpredictable nature. They both inspire us all to live our best lives with joy, and compassion for others. Congratulations Angela (and Karl!) for this great honor. I know you’ve said how humbled you are by it as well as the people who were honored alongside you, but it is truly well-deserved.

Here’s a YouTube link to the Champions of Change for Parkinson’s disease event.

Information about all the Champions of Change for Parkinson’s that were recognized can be found here on the Parkinson’s Action Network website.

Patients are People, too!
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In the Parkinson’s community, there’s a lot of emphasis on medical treatments and research in order to live better with the disease, but there’s more to life and good health than medicine can provide. The Robbs show us how by example and in their advocacy, and you can read about how they do it on Karl’s website, A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease. He’s written a book by the same name.

Parkinson Cafe Network

Come for the coffee, stay for the company and conversation!

A Soft Voice In A Noisy World

Dealing and Healing with Parkinson's Disease

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