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.

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).

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.