Take My Brain. Please.

Many of us in Idaho would really like to see Parkinson’s research (and research funding) come to our local universities. Many of us in Idaho’s Parkinson’s community would like to participate in studies and trials. We really want to do our part, honest, but the reality is that it’s just really hard (and expensive) for many of us to travel to the areas where these studies are held. So some make the choice to do the only thing they can…donate their Parkinson’s brains to science so maybe we can help contribute to finding a cure for this awful disease.

I was contacted a few weeks ago by a hospice social worker who wanted information on how her patient and his family could make this final donation.  I was stymied, but took to the Parkinson’s chat rooms and found several options.  Only one was really viable for someone in Idaho, The Harvard Brain Bank.

The patient MUST fill out a form in advance, and MUST make sure family, hospitals/nursing homes know their wishes, and that the local funeral home is also aware of what the process is.  There are several hospitals in the state with the capability to do this.  THERE IS NO CHARGE TO THE FAMILY FOR THIS DONATION!  (Although I was warned some funeral homes charge an extra “delivery fee” to make the side trip to the hospital for the brain harvesting procedure). Time is of the essence in this process.

But I guess you could say time is of the essence for all of us…those with Parkinson’s and those who have loved ones who suffer from this disease.  To the family that reached out, know that you are in my thoughts as you reach the end of this journey with your Husband/Dad/Brother/Grandpa/Cousin/Friend. I grieve with you, and thank you for thinking of others during this painful time.

Now if you’ll excuse me, I have some pre-registration forms to fill out. (FYI they need non-Parkinson’s brains too).

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.

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

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.

 

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.