Hi Everyone,
I was browsing our local community college catalog recently when I stumbled, (the story of my life lately) onto an online course called, "Creating Your Own Non-Profit Organization". This has been an interest for sometime, I needed the, “how-to”. My plan is to develop an organization that provides for unmet needs for pders. This could be paying for meds for those w/o insurance, co pays for those with insurance, physical therapy, scooters, refurbished computers, respite for caregivers, the list goes on and on. I have searched for such an org. but have not found one. I know there is PPA for some meds as they pay for my Requip. There was a Somebody? /Holly Foundation, but I believe they disbanded, he was a football player and she was the daughter of one of the actors from Sesame Street who has or had pd. If anyone knows of such an org. please let me know. This is a step-by-step course (just what this brain needs) and part of the first assignment is to name your org. I thought of Perks for Parks (kidding). I need ideas, I welcome any suggestions. If it’s an acronym that would be great, it needs to be catchy, something people wouldn’t easily forget. If anyone can contribute ideas they would be much appreciated. I have always been impressed as well as intimidated by the knowledge base of this group; I would like to thank you for all of your hard work and research, your encouragement and support, and your perseverant attitudes. I have been reading and learning both from the old forum and the new for well over 3 years. I think I posted maybe twice on the old brain talk and once here.

So, who is this crazy turtle person? My turtle handle came from my students having a class mascot- Franklin the Turtle and this began everyone giving me turtles (glass, ceramic, wood, etc.) Then I realized how fitting it was- I am ssllooww like a turtle, hide in my shell a lot pushing friends and family away, or not letting them in, etc. I am Carmelita, I am 54yrs old, dx 96, had to stop teaching in 03-04, have been in a real funk since my sister-in-law passed away six months ago, I believe that the stress of her illness and death significantly contributed to a speedy acceleration of my symptoms which happened over about a three week period following her death. My current symptoms are stiffness, spasms, speech difficulty, troubled facial expression, freezing, severe gait and balance problems, (I crawl a lot) dyskinesia, dystonia, and a little tremor. I know Sinemet contributes to many of my problems, but with it I am able to type, take care of myself, and do have some on time. My neuro wants me to have DBS, which I am strongly considering. Medi-cal is still deciding whether I am disabled or not and did you know that the California State Teacher’s Retirement Disability System provides no health coverage? I will be eligible for Medicare when I turn 64, (yeah, ok) I would like to wait until they make the implant smaller, I know we/they are waiting for FDA approval, I think if I can fit over 1,000 songs on my little mp3 player that they can make that dang device much smaller. I have tried many alternative therapies and recently, @ 3 weeks ago, restarted taking curcumin (I don’t know why I stopped) which has allowed me to lower my Sinemet dosage from 600 to 500 mg. I have also added ginseng and ginkgo, which I believe, is improving my attitude. I think that taking this course and believing that this org. can become real is giving my life purpose again. By the way I’d be perfectly willing to share that purpose if anyone would like to jump onboard.

Well I have definitely strayed from the main point of this thread but I thought it important to finally introduce myself. I feel like I know many of you, and again am very thankful for this forum. Yesterday, I spent two hours writing a similar thread only to have it disappear when I tried to post it. So if it should happen to appear from who knows where? I guess we’ll all know how well the ginkgo is working!
Sincerely,
Carmelita