APRIL 11TH, WORLD PARKINSON’S DAY

Today is World Parkinson’s Day. I’m asking each of you to take a moment to think about what life would be like if you, or someone you loved, had Parkinson’s disease. Think about it would be like if suddenly the brakes went out on your car while you were driving…no matter how hard you hit the brakes nothing changed. Or, that you were carjacked and no longer in control at all. Crude analogy, but that’s Parkinson’s.

I DON’T WANT YOUR MONEY! Yes, I ask each of you to consider donating whatever you feel you can, but know we all have our own causes we are passionate about. While funding is a big part of that, equally important are things like signing up to be an e-advocate and raising awareness about what this disease does to individuals, families, businesses and communities.

You don’t have to contribute financially to contribute…call a friend or family member caring for someone with Parkinson’s and thank them, bring in dinner, offer a break, mow the lawn, anything. If you see someone struggling (it’s not always a tremor, it’s often freezing in place as well), ask if they need help. Or just get online and learn something about this disease because 9 MINUTES FROM NOW another person in the US is going to receive a diagnoses of Parkinson’s disease. They will learn that while their symptoms are manifesting now, 80% of the brain cells that produce the necessary dopamine we all need died a long time ago. And they are going to learn that, as of today, there is NOTHING we can do to fix that.

I DON’T WANT YOUR MONEY, I WANT A CURE!

But I’m asking anyway. Please consider a donation to http://pantulips.kintera.org/faf/donorReg/donorPledge.asp?ievent=1105485&supId=379770172.

Opposites Attract = Beautiful Alliances

I’ve been blessed over the last year to work with the team bringing Dance for PD to Boise. This is a unique dance therapy program for Parkinson’s disease patients created by the world famous Mark Morris Dance Group. There are many partners responsible for bringing this program to Boise this April, namely the dancers at Trey McIntyre Project. Other partners include Ballet Idaho and the Northwest Parkinson’s Foundation, as well as the local Parkinson’s community.

If you’ve never seen a TMP performance, you’ve missed out on a beautiful thing. As someone who inherited clumsy genes, I often leave a performance moved to tears by the beauty and genius behind their work. And that’s part of what makes Dance for PD such an unlikely partnership…dancers who have superior control over body and mind, working in partnership with a group of people who have an ever increasing loss of control of body and mind. And yet it works. Beautifully.

And I can’t think of a better way to celebrate Parkinson’s Awareness Month than to launch this during the month of April.

The big philosophical question and the little flower answer

The other day my super smart cousin Martin, the doctor, posed a question on Facebook…”how do you explain something to someone who has never experienced it?” Lots of discussion ensued, but it got me to thinking about how to describe grassroots advocacy to someone who has never experienced it before.

I’m a gardener. Not a great one, but a passionate one. So it should be no surprise that I came up with a flower to describe grassroots advocacy. (And no, it’s not a tulip). Meet iris reticulata, the teeny weeny little harbingers of spring in my garden.

The first year I planted these bulbs I was so excited…I didn’t know at the time that iris reticulata aren’t the beautiful giant blooms I remembered from my time in Japan. They are miniature versions. Small. And that first spring only a few lonely blooms sprang forth just a few inches above the soil. I was so disappointed! I was expecting instant success.

The next spring there were a few more blooms. The spring after that even more. You see, while they are still small, they are spreading. In a few years I envision a carpet of miniature iris gracing my garden.

And this is how I would describe grassroots advocacy to someone who has never experienced it. It starts small…with one tiny bulb, and one or two tiny blooms…at first. It grows slowly, but it does grow and it spreads. And maybe that’s part of the reason grassroots advocacy works. If we had an issue that spread like wildfire, it would burn out quickly and leave nothing behind. This slow and steady growth is what helps propel the grassroots message forward and take root.

And you know what they say…to plant a garden is to believe in tomorrow.

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A Whole Lotta Firsts at PAN Forum 14

Last week I completed my fourth year representing Idaho at the Parkinson’s Action Network (PAN) Forum in Washington, DC. In our world of advocacy, that makes me an old timer. But this year was so full of firsts, it may as well have been my first time there. Here is a breakdown of my Top Forum Firsts:

1. For the first time Idaho has a full PAN Leadership Team. I was joined by Assistant State Directors Vera DeMay from Boise and Grove Ayers from Coeur d’Alene. (FYI, we are looking to hire an Assistant State Director from Eastern Idaho…the hours are flexible and the pay is knowing you are actively helping to create an environment to find a cure for this terrible disease).

2. This was the first year we called on Capitol Hill where we weren’t in danger of sequestration or shutting down the government the very next day. It was a refreshing change, although asking for the government to not only protect but to increase biomedical research funding is always a challenge. This year two out of the three members of Idaho’s Congressional delegation we were able to meet with pledged their support to help protect the NIH budget. Thank you Senators Jim Risch and Mike Crapo!

3. This was the first year we got to meet face-to-face with one of our congressmen who hasn’t had time for us in the past. Scheduling all these appointments on one day is a logistical nightmare, and doesn’t always mean they don’t want to meet with us. While this was a huge scheduling success, we were stunned when he advised us to speak to the Congressman from Maryland…another state…even though each member in our group was a registered voter in his district. Some might even call us his constituents.

4. This was the first time our advocacy team (Idaho and Washington teamed up for our visits) that we had a Physician Scientist on our team. If you want to know how critical it is is to support research funding, talk to the scientist who treats Parkinson’s patients and is trying to find a cure or new treatment while living in fear that the funding necessary for this research will run out any day and that she and her entire team will be out of jobs. We just worry we’ll run out of time.

5. I cried in public, telling my family’s Parkinson’s story. I know some girls can cry on cue…those of you who know me well know I’m not a crier. I was mortified to be sitting in my congressman’s office bawling. But it just goes to show how huge the burden is, and how desperate we are for a cure.

6. But to end on a positive note, this was the first year I really felt like we, the Idaho Parkinson’s community, are being remembered and heard. Congressional staffers are constantly turning over, but they are remembering us! People from Idaho called in all day while we were on the Hill, in support of our team and the message we were delivering to our Members of Congress. Our voices are being heard, and we ARE making a difference.

It was the first year I felt that little burning ember of hope fan into flame. Thank you to everyone who advocates with us and for us.

The shoe on the other foot.

One of the many facets of Parkinson’s disease can be the changes that are harder to spot from a distance…personality, mood, memory, impulse control, dementia and more. Family caregivers often struggle to accept and deal with these changes. As my Dad’s Parkinson’s has progressed we’ve had our share of these issues, and Mom has borne the brunt of it as his primary caregiver. When Dad is being mean, or confused it’s been easy to tell her not to take it personally and to step away.

And then today I dealt with it first hand, and realized how easy (and annoying) it is to be the armchair quarterback. Someone in the Parkinson’s community whom I care about and respect came at me in a way that took me by surprise and both hurt my feelings and made me angry. You would think that I would have instantly recognized the paranoia, confusion and aggressive behavior as Parkinson’s related. Nope. This armchair quarterback got pretty worked up.

When I finally calmed down I realized that as unpleasant as the whole incident was, it was a great lesson. No matter how much we think we know the right way to handle things, until the shoe is on the other foot we don’t know squat. The next time Dad’s having a bad day, I will keep my advice to myself and just give Mom a hug.

Appy for Advocacy

My customers and I often exchange tech tips and favorite apps, and one of my Realtors recently recommended videolicious for iPad as one I should try. Since I don’t have real estate listings to use, I tried it out using my recent experience at PAN Forum. Given that I did it all in just a few minutes on my iPad, I think it turned out pretty well, if I do say so myself. http://video.videolicious.com/bc58b692-e688-4cb8-a0bd-5381ed50cada

The free version will allow you one minute and up to 10 photos. The premium upgrade is $60 a year, and if you anticipate LOTS of video storage you may bump up on those limits as well.

If you have any other suggestions for easy to use apps, please share.

H-appy day!
TRLB

The Case of the Working Caregiver

Earlier this week I had the opportunity to visit with an advocate for the working caregiver. You know them, they are the people who are working yet still manage elder care responsibilities; the people who put careers on hold (or at risk); the people who save the government billions of dollars in unreimbursed care expenses; people like me..

The very next day the Idaho Statesman published an article about this topic. (http://www.idahostatesman.com/2013/02/19/2457638/caught-in-the-parent-care-trap.html). Later that week a report was published about the economic burden faced by America’s family caregivers (http://www.parkinsonsaction.org/news/14-4-billion-economic-burden-of-parkinson-s-disease-takes-toll-on-families). Coincidence or evidence of an epidemic?

The case of the working caregiver is the other, often hidden, side of diseases like Parkinson’s. I advocate for protected NIH funding for biomedical research because we desperately need a cure and even a one year delay in research can add 15 years for a cure to reach the hands of patients. I advocate for better access to medical care to the Veterans we made promises to, who have developed diseases like Parkinson’s due to chemical exposure and traumatic brain injuries (TBI). I advocate for Congress to protect these things in the face of looming sequester, all without any consideration to the costs of the working caregivers, the people like me.

There are no easy answers facing Congress. I’ve seen the charts and graphs that spell out the future debt for Medicare and other programs. What those charts leave out is the debt burden currently being paid by working caregivers. The smart decision is to invest in research for cures and prevention now, and spare future generations the burden of ever knowing what it means to be a working caregiver at all.

TRLB

Points of intersection

I am blessed with an amazing career at a company I love, a supportive family I get to see and take care of every day, and an amazing network of colleagues, friends, family and fellow Parkinson’s advocates.

A few years ago when I first fell into the role of working family caregiver and Parkinson’s advocate, I was advised by several people to keep it on the down low so that it wouldn’t interfere with my career aspirations.  (This is the same philosophy that pushes many people to create two Facebook profiles, one for friends and family and one for customers and work people).  And at first I did try to keep them separate…and was miserable.  Maybe it’s because I have my hands full managing one of me, or maybe it’s because I’m a firm believer that WYSIWYG isn’t limited to computer speak, but that’s how thereallisabain was born.

My professional sales experience has helped me be a better advocate, although the process is very different (more on that in a future post). My very public advocacy work has put me in a position to help colleagues and customers as they find themselves facing Parkinson’s or other neurodegenerative diseases.  And by never hiding the fact that I love being in sales for my title insurance and escrow company, many of the people I’ve met in the Parkinson’s community specifically request to close at my company when they buy, sell or refinance.

So by allowing the many facets of my life to freely intersect, everything flows together and forward.

TRLB

***Speaking of networks, I have to thank my dear friend Lisa Thorne for encouraging me to revive my blog.  Check out her blog Productivity Challenge 2013.