[turtle95610]

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

[reverett123]

...for ignoring your PM yesterday. I thought you were a scam of some sort. That is a good idea about the org. I have a suggestion - when you are ready why not ask the manufacturers of our various meds to fund it? I spend about $10,000/yr for meds. There are supposedly 1 to 2 million PWP in the US alone. That's ten BILLION bucks a year. If at any given time ten percent of PWP need such help, Big Pharma could do a lot of good by plowing ten percent of sales back in to the patient community as a tax deductible donation. And I could cancel that nasty protest campaign that I had planned

[turtle95610]

Thank you for your reply- 10,000 is a lot of money !!!! I wonder how many of us pay for our drugs? I am afraid that most drug co.s would say they have Patient Assistant Programs that handle that need. I am compiling a iist of #'s and websites and will post it tomorrow- what I didn't find this afternoon was the main PAP number that told me which drugs were covered - as far as I know Sinemet is not covered so that would be a few co.s to approach. Coverered PD drugs I did find were Artane, Comtan, Parodel, and Stalevo, all from their own co.s. Walmart- not every state, now has over 3,000 generic drugs for 4 bucks! Only two are listed for pd, those are benztropine and trihexyphen (never heard of either) I also have a discount card on file at my pharm, that does discount my Sinemet to @ 50.00 for 180 (25/100) and makes 120 valium @ 13.00 and 30 soma 8.00-generic of course-not medicare related and was a simple one time phone call. Costco also has low cost generic drugs, they say at their cost but mine are still lower w/ the discount card-it was free and I have no idea who the sponsor is but I will try and find out
more info tomorrow.

[turtle95610]

I see where to post this now-above on resources

[burckle]

Another way to get around the high cost of medication is to volunteer for PD trials. My medication cost me nothing and I have one of the best PD doctors in the country. Even the parking is free. It's all because I volunteered for trials. I realize that this is not open to everyone but the roster of trial volunteers should be larger than it is. I understand that the state of Connecticut has 10,000 PD patients but only 500 on trials.

The patients that I feel for are those who live in rural regions or in small towns where services are marginal and fellow-PDers are far apart. Why not have somthing like Meals-on-Wheels where instead of delivering meals, companionship, conversation, a game of scrabble are offered?

I live just outside of New York City where there are many support groups and they meet weekly. Toward the end of summer I'll be moving to Maine where support groups meet once a week. Then I will know what it's like to be isolated

All the best,

Lloyd

[turtle95610]

Thank you for your reply- Yes, trials are another way to get free meds. I sure wish I could share your doctor. Sometimes the numbers are small not because of lack of enthusiasm but because of the strict criteria of the trial.... for instance I volunteered twice for gene therapy, and Spearamine, but was disqualified once because I had no insurance and should I have any complications, who would pay for it?, and would the people in charge think I was volunteering because I was desperate?, the second one I was disqualified because of the same reasons and also Dr. Christine (who I think is brilliant) at UCSF also felt I wasn't "optimally" medicated. I also volunteered for some drug studies and was found to be not what they were looking for. Another factor was my neuro at the time had changed my dx from PD to Parkinsonism (I believe for religious reasons) because he knew they wouldn't do any "cell" type study on me unless I had the genuine disease. So I definitely encourage anyone who can to participate in studies because sometimes it is nearly impossible to find enough volunteers who meet the criteria.

I love your idea of the companionship on wheels, I think loneliness, like stress probably has a similiar effect on our disease acceleration. The possibilities of what we can make happen for one another are really endless. You know I looked into cooked meals that would be delivered weekly for my brother when his wife passed away. His church ended up filling that void but it wouldn't be a bad idea to add that to the list for people that are unable to cook dinner for instance, to have something that resembles more of a complete meal on occasion or perhaps a gift certificate to Safeway.com or any other grocery.com, I tried it once and it is close to shopping in the store, there are pictures of items and it is very well organized, you can get it delivered the next day, of course they want 10 bucks after the 1st time for delivery but hey gas is getting crazy and if you can't get out for whatever reason it is a real luxury to shop online. Well just get me warmed up - huh? I think I have done more typing in the last two days then I have done in 6 months. Keep the ideas coming--- so far the name possibilities are; P.D.C.C --Parkinson's Disease Community Chest, you know like monopoly.
Parkinson's Resource and Information Network
which would be B.R.A.I.N. if it could only start with a B - maybe it could go on a brain as part of a logo and
New Ways for PDers or New Days for PDers
I really appreciate your input- thank you!