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.

I’m not shirking my responsibilities…just procrastinating.

I am Japanese-American by birth and culture. We don’t stick our old people in some random facility when they become “inconvenient” to care for.    We are raised to believe that not only is it not an inconvenience, it’s an honor and privilege to care for them as they reach the end of their life’s journey.

So imagine how offended I was when our VA social worker told me it was my responsibility to start researching facilities now, as well as update all of our documents.  Poor Virgil, he got the full brunt of my, ” we don’t need to do that, we just remodeled our house with a wheelchair accessible bathroom, ramps, etc.  He very calmly listened to everything I had to say, and then said again that it was my responsibility to my 100% disabled Veteran with Parkinson’s disease that I find out what our options were BEFORE we needed them.  His words still ring in my ears, “by the time you need it, it will be too late.”

And he is right.  Like many of us, either adult children or aging seniors, we put off making these plans because they are incredibly unpleasant to think about or discuss. We wait until things are a crisis to make life decisions.

And since I’m not one to shirk responsibility, I quit pushing back and dutifully took notes of everything we needed to do.  I procrastinated a few weeks before getting Dad’s Advanced Directive and Medical Power of Attorney updated (yucky conversation, let me tell ya).  And while every fiber of my being wants to cancel or reschedule, I have an appointment tomorrow at the Veteran’s Home to do our homework and explore our options.  Wish us luck.

TRLB

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

Why would you visit Congress to ask for protected biomedical research funding 48 hours before the sequester?

I had planned to share with you all the reasons why I travelled to Washington, DC to educate our Members of Congress on the need to protect biomedical research funding, but Shareef Jackson’s recent post, The Sequester & Captain Caveman: Bad for Science says it all.  Enjoy!

TRLB

http://shareefjackson.com/blog/2013/3/2/the-sequester-captain-caveman-bad-for-science

The Sequester & Captain Caveman: Bad For Science

The good old USA has decided to enact legislation that no one wanted to enact. In awesome doomsday terms, it’s known as the sequester. It doesn’t really make sense to me – but apparently our government couldn’t decide whether to focus budget cuts on entitlement programs or revenues, so they just decided to cut everything! Unfortunately, that everything includes science and tech. 

One of my favorite quotes is from Dr. Elias Zerhouni, the former director of the National Institute of Health. He states that the sequester will set back medical science for a generation.  He answers one common defense of the sequester, which is that scientists can just go work for private industry.​

That’s ridiculous. That’s the most ridiculous, caveman statement I’ve ever heard. That’s not the way science works. Science works with bright young people who are attracted to science. David Baltimore had the Nobel prize at 35 for a discovery at 27. Today he wouldn’t even get a grant from NIH. The average age for grant recipients is 38 or 39. Research is an investment, it’s not an expense.

Research institutions will get less money, which means less research being done. Charles Bolden of NASA has outlined how the cuts will affect the U.S. space program with a loss of $51 million, which includes delaying and/or canceling several projects that will lead to the return of manned spaceflight.

My hope is that we get our house in order and squash all of the politics and beef between the House and the Senate. Until we do, our country will continue to suffer.​

Source: Scientific American, via Slashdot

 

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.

 

Accidental Inventor–I’ve fallen and no one can hear me

A month or so ago Dad took a bad fall.  He’d been trying to get a warmer shirt out of the closet when he lost his balance and fell.  It was just after midnight.  Many people with Parkinson’s have a soft or low voice, including my Dad.  Add to that the clothes absorbing some of the sound, and that mom was in a deep sleep…Dad was on the floor for almost four hours.  (Our room is on the opposite end of the house so we weren’t any help either).

I was telling my friend (who has a family member that works at Hughes Security Solutions) about my idea to prevent that long wait for help from happening again. She also has experience caring for a loved one with Parkinson’s, and was eager to help.  There were several small personal alarms to choose from.  I picked out the one I thought would fit best on his walker leg. It cost just under $18.

I chose this alarm because it works like a grenade…pull the pin and it goes off.  If Dad’s tremor was extra bad, or he was too weak to hold down the button, all he’d have to do is pull the cord. Also, the pin never comes all the way out, so you’re in no danger of losing it.  A simple tap to push the pin back in turns off the alarm.

Step 1: I moved the wrist cord to the pin.  This would be tough for someone with PD to do themselves, and I admit my efforts aren’t the prettiest, but it worked. I used a pair of needle nose pliers to remove the ring holding the cord, as well as the cute rhinestone charm off the pin. Moving the cord ring to the pin was more challenging than I’d thought, but it’s functional.

(This particular model also has a motion sensor option.  I made sure that switch was in the “off” position, and closed the sensor cover.)

Step 2: I attached the alarm to the front leg of Dad’s walker using 3M Command Picture Hanging Velcro strips.  (about $4 for a package). I attached it high enough above the wheel that there is no risk of it being accidentally activated, but low enough that if he was on the floor he’d be able to reach and pull the cord.

Hopefully we won’t need to use this, but it does give us peace of mind that should this happen again Dad won’t be on the floor for hours.

TIP: Make sure to remove the batteries BEFORE starting your engineering work…otherwise your family will be subjected to 100 decibels of shrieking alarm.  This model has a slide off battery cover, but some have tiny screws that may be difficult to maneuver.

Moving from Awareness to Action: The Accidental Advocate Meets Other Accidental Advocates

Today marks the beginning of Parkinson’s Awareness Month…everywhere. April is officially World, US, Idaho, and even Pocatello and Chubbuck Parkinson’s Awareness Month. We’ve come along way from the days where no one had really heard of Parkinson’s to a month of worldwide recognition of the need for a cure.

As I continue my own journey of Awareness to Action, I’ve been blessed to meet many kind and wonderful people along the way. Each of us has been touched by this disease, and chosen not to let it defeat us. Each of us has chosen to contribute our individual voices to join a unified chorus demanding a cure. Each of us has our own story, and our own way of making a difference. From those who wake up every morning and smile through the tough times as they deal with the reality of life with PD, to those that make sure they are being the best caregivers they can be.

Advocates in action include Holly, Mary Jo and Bette, caregivers themselves who donate their time to bring the latest in research and information to the members of their local support groups. Together we have launched a grassroots education campaign here in the Treasure Valley to let Doctors, Nurses and Physical Therapists know that there are not only patient resources available, but also ongoing education opportunities for them as providers.

Advocates in action include Victor and Wendy Baron, founders of http://www.ipdsg.org. Motivated by their own experience with misdiagnoses, they have created a non-profit organization dedicated to educating medical providers in Idaho about Parkinson’s Disease, as well as being an on-line clearinghouse for patient information.

Advocates in action includes…you. Your voice. You don’t have to have PD, or have a loved one with PD to make a difference. You know me, so you know at least one person whose life has been changed forever by PD. I ask you to support Parkinson’s Awareness Month by registering as an advocate at http://www.parkinsonsaction.org. It’s as simple as a few minutes a month, responding to an action alert. PAN does all the work for you. They send you the action alert, you put in your zip code, they give you an email template or talking points, you hit send. That’s it. I’m asking you to make the move from awareness to action…to advocacy.