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Preparing for emergencies. Do you have a plan?

Two separate incidents led me to focus on preparing for an emergency this week. The first was hearing the story of a friend who ended up in hospital quite unexpectedly and had to arrange for things to be taken care of at home. The other was the potential for a snow storm. With some pre-planning, both situations could be managed with less stress, but where to start?

Our local county, Fairfax, has an Office of Emergency Management, so I contacted them to collect some printed material to share with my friends in the Parkinson community. They gave me lots of packets with good information to distribute, and you can find much of it on their website – click here.

I also picked up a brochure by FEMA, the Federal Emergency Management Agency, with a checklist for people with mobility problems. Here’s a similar checklist that I found on their website – click here.

While I was looking at all this information in front of me I was still wondering, where to start? I can understand why this information is gathered and then so easily collects dust somewhere. Two questions came to mind:

  1. If I had to leave the house RIGHT NOW, what would I need to take with me and what would I want to take with me.
    • By need, I’m thinking of important documents like ID and health insurance, as well as emergency contact information, list of prescription medications and the medications including glasses and hearing aids.
    • By want, I’m thinking of personal items for comfort or because they’re sentimental.
  2. Do I know where these things are?

After looking at all the information I gathered, I decided that the next thing to do is divide up the questions and checklists into workable segments and work my way through each of them:

  • What are the most common emergencies we might need to deal with?
    • Unexpected visit to the hospital, loss of power, stranded in the home due to the weather.
    • How will we know in advance? (If you’re in Fairfax county, check out their alert system http://www.fairfaxcounty.gov/alerts/)
    • Is special assistance required?
  • Create plans for each type of emergency
    • In the event of a disaster, where will you go? How will you get there? Who will help you?
    • Share your plans with the people you rely on to help you.
  • Organize documents and keep them updated
    • Emergency contact numbers
    • family, financial, health and property information
  • Emergency supply kits – one for home, another for vehicle
    • Check regularly that the equipment you may need to rely on is in working condition.

Planning for emergencies can seem like a lot of work and an easy thing to put off, but it’s a sure bet that you’ll appreciate having a few less things to worry about when you’re dealing with a crisis.

Have you already been through this planning process? How did you work your way through it? And did you ever have to put it into practice?

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A Christmas Cookie Celebration!

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

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

It’s our Christmas Cookie Celebration!

Bring your favorite home-baked or store bought cookies to share.
We know we have some amazing bakers and shoppers out there!
If you don’t mind sharing your recipes, I’ll post them on our website
just click here to send me a copy by email.


Christmas donuts or Christmas cookies? I know . . . Christmas donut cookies!!

We’d love to see you!
People living with Parkinson’s or other related movement disorders such as Lewy Body Dementia, their carepartners, family, and friends are all welcome.

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

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.

For more information and to RSVP please check out our website at www.ParkinsonSocialNetwork.org

See you on December 12!

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Living well with Parkinson’s from a patient’s perspective

For as long as I’ve been involved with our local Parkinson’s support group, we’ve prided ourselves as being a positive and upbeat group. No pity party here! We are all inspired – people living with Parkinson’s as well as their family and friends – when we hear how people live their lives with a positive attitude. At the World Parkinson Congress, I heard Bob Kuhn, who lives with Parkinson’s, speak about living well with Parkinson’s.

According to Bob, despite all the ways that Parkinson’s can affect your life and leave you feeling as though you don’t have any control over anything, there is one thing you can control and that is your attitude. He told us, “Attitude is your basic choice”. The quality of your life, including your health, can be affected by your attitude.

For people living with Parkinson’s, their identity has been redefined by this disease but a positive attitude gives strength and hope to others.

Bob showed us the difference between illness and wellness – there’s only “I” in illness but there’s “we” in wellness. How’s that for a different way to look at well-being?

Bob also raised the question, is the pain in trying and failing? Or is it in failing to try?

Bob Kuhn lives with Parkinson’s and writes for his blog called Positively Parkinson’s: Parkinson’s Disease – Challenges and Encouragement.

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Special educational program on End of Life Care

Holding Hands with Elderly Patient

Wednesday, November 2,
10:00 am to 12:00 noon

Sponsored by Capital Caring, Insight Memory Care Center, and the Parkinson Social Network.

As the end of life approaches, it can be a very difficult time to deal with the variety of emotions, while still coordinating care for a loved one. In honor of Hospice Month, please join us to learn more about hospice services and benefits for your family.

Topics presented will include:
What is Hospice? Arvette M. Reid, Care Representative
What to Expect at End of Life Joyce Montgomery, MSW, LCSW, Social Worker
Physician Orders for Scope of Treatment (POST) Nancy Crowley, RN, CHPN, Clinical Supervisor

Respite care may be available by request; please notify us when registering to confirm availability.
At: Insight Memory Care Center
Linda & Lou Mazawey Education and Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030 Map
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.

Please contact Christi Clark at christi.clark@insightmcc.org or 703-204-4664.
You can also register online at www.InsightMCC.org.

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A Message From the Parkinson Voice Project – How to Live With Intent

Today I watched a video with one of the best explanations of what Parkinson’s disease is. People who know me, know how I cringe whenever a Parkinson’s presentation begins with an explanation of how James Parkinson first described the shaking palsy, because it’s often an indication that the speaker doesn’t really know much about PD. This video is different. Yes, it begins with James Parkinson, but it goes on to explain why the disease carries his name, how a diagnosis can be made, and the role of dopamine in the brain, in a way that is easy for the layperson to understand. It then goes on to explain how living with intent can not only make your voice stronger, but how it can also change other aspects to how you live; it can change your movements from small and hesitant, to bigger and more purposeful.

Produced by the Parkinson Voice Project, this video doesn’t just have information for people living with Parkinsons. It’s for anyone wanting to improve their health and well-being.

Click here to view Parkinson Voice Project’s informational video

Click here to go to the Parkinson Voice Project’s website for more information about this amazing organization.pvplogo

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WPC 2016 – First Thoughts

wpc_logoI love the buzz at conferences. So many people gathered together with a common interest ranging from above average to obviously passionate, as was the case last week at the World Parkinson Congress 2016 (WPC 2016) in Portland, Oregon. It was attended by 4,400 people from 67 countries!

There was a kind and compassionate vibe that I’ve never felt at other health related conferences. Maybe that’s because people living with Parkinson’s were sitting right next to people who care about and for them, either as family or because they work with them. We all wanted to find a cure or at least find ways to help our friends have a better quality of life. Most of the presentations I attended were given by panels that included medical professionals but also people living with Parkinson’s, so we would get all perspectives.

For all the loss that is felt by those living with Parkinson’s, their creativity comes shining through. There was lots of humor; for instance, when a Dutch gentleman introduced us to a song he wrote, “What shall we do with a freezing Parki?” (sung to the tune of “What do you with a drunken sailor?”). There was also an impressive display of quilts, an Art Walk, and a Book Nook with about 60 books and the opportunity to meet some of the authors. The WPC Choir sang at the opening ceremony and because they came from different countries, rehearsals were conducted in the months prior to the congress by Internet video, with their only in-person rehearsal on the day of their performance. My favorite show of creativity was the winning submission to the video contest that was shown at the Opening Ceremony. It was called Victory and had a catchy tune that had the audience tapping their feet and clapping along. I found myself humming it throughout the week.

Victory really captured the essence and upbeat feeling of the congress which was planned as “a meeting of hope” – hope for a cure and, until one is found, hope for a better quality of life for everyone touched by Parkinson’s.

Here are some links to some of the displays and performances I mentioned:

Winner of the WPC 2016 video contest – Victory by Lori Campbell

All the videos that were submitted for the WPC 2016 contest

WPC 2016 Choir performing at the opening ceremony:

WPC 2016 Art Walk, including the quilt exhibit

Books featured in the Book Nook:

Check out A Soft Voice in a Noisy World by our friend, Karl Robb

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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?


Parkinson Social Network

Making the most of life with Parkinson's

A Soft Voice In A Noisy World

Dealing and Healing with Parkinson's Disease