At the moment, I find myself waiting on two doctors to come through with the paperwork I need to officially file my applications for disability . I’m guessing that once the paperwork is filed, it’ll take at least a month to get through the , then another several months to make its inexorable way through the . Then they will come up with a retirement date. And I’ll be retired.
What are my plans?
I plan to get in contact with as many Parkinson’s advocate groups as possible and offer my services as a speaker. I’m still loud, although slurry and stuttery. And I’m still a decent writer.
I am going to try my level best, using whatever energy I have left for however long I have to raise awareness about , and to raise money to fund the research.
If we wait for the government, it ain’t gonna get done. Now that the conservatives are back running the show (at least in the , although in the and Senate, they roll over on their backs and shoot a little jet of “fear pee” when a walks by), it’s gonna be a long time before we get resumed federal funding for . Religious superstition will once again take precedence over .
My job will be to convince as many people as I can that this is NOT a natural occurrence of aging, and that even though most of my fellow Parkies are elderly, they deserve a good quality of life. Most of all, I want to convince folks that if they fund research, the day may come – sooner rather than later – when a definitive CAUSE is found for what they currently call “idiopathic” Parkinson’s disease. Once they know for sure what CAUSES it, it’s easier to work on ways to KEEP IT FROM HAPPENING!
My job will be to present Parkies as alive, vibrant, intelligent folks who are worthy of support. If I’m successful, perhaps someday we will have a MEANINGFUL Parkinson’s Awareness Month where the media FOCUSES on our plight and WORKS towards highlighting research and funding the cure.
If I’m not successful, I’ll either be dead (and, if I have my way, on display somewhere) or demented.
Either way, my problem will be solved. But what will we leave for the 1.5 million Americans (probably more by then) who HAVE the disease and the 50-thousand (also likely to increase) who get the diagnosis this year, next year, the year after that?
Your mom? Your dad? Your gramma or grandpa? Your brother or sister?