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.
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).