Congressional Briefing Comments – The State of Technology-Enabled Care

Proud of my fellow Parkinon’s advocate! He so eloquently lends his voice to the entire Parkinson’s community, and we are forever grateful for his continued efforts.

Israel Robledo

Following are the comments I made at the congressional briefing on 3-13-14:

Thank you for the opportunity to take part in this briefing. My name is Israel Robledo. I was diagnosed with Parkinson’s Disease in 2007 at 42 years old. I had dealt with the symptoms that included tremors, rigidity, balance issues, and slowness in movement five years prior to that time. As a result of my neurologist in Midland, Texas, whom understood the importance of a good health-related quality of life, I was able to and continue to receive the best specialized care for my progressive, neurodegenerative, incurable disease. I must share that I consider myself blessed to have the partnership with a neurologist who said, “I don’t know what it will be like for you in five or ten years, but in the meantime, I want you to have the best quality of life possible”. He went on…

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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.