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By LOHENGR1N On 2010.07.13 00:30
This post might be like our medicine, hard for some to swallow and leave a bad taste in your mouth. If I offend I apologize.

Ok, I've got a gripe! I don't know the answers, so I guess I'm just venting here. The postal carrier just delivered my APDA Young Parkinson's Newsletter today. Front page; "Finding the triggers for Parkinson's Disease". After all these years I'm getting discouraged with the seemingly infomercial style of pushing from one source or another as to causes if we had more data, more funds, more, more...

Anyone else remember porcine cell transplants? (let's inject pig cells into their brain and it will produce dopamine.......disaster! Well they didn't know how many to inject so let's guess..........um, too many! Too late now!

Stem cells, we need a bunch to experiment, what's the first thing they do? Take cells that morph and contaminate them turning them into rodent cells. Then come to find out in a university in NY state they have to abort experiments as injected cells morph into tumors (malignant) and the study animals all had to be killed. Let's just give them some more and the money to be irresponsible again!

DNA, We need to test for gene causes and predispositions. So far less than ten percent were seemingly found to be tied to genetics. Funny I haven't heard that in the news! Then again if this was broadcast maybe those DNA testing labs wouldn't be raking in the money running tests of which over ninety percent are of no use to Us.

Now it seems common chemicals might be the culprit, insecticides, pesticides and other chemicals that remain in the environment! Gee you don't say? This has been bantered about for years! Oh yeah another trigger just might be lifestyle (just what is needed with all the other misinformation out there! relegate it to the category of the Gout! Too much high living gives you that you know or so they say!)

But they need funding! They need to run tests! Studies! I'm running out of time for studies folks as are everyone reading this if you or a loved one has Parkinson's Disease the clock is running. I say it's about time they chuck these programs that have hit dead ends or produce so little. If We didn't produce in whatever job we had or have we'd be gone! So should they. Talk about a crime! They painted that guy that bilked all those people out of their savings and retirement funds as a worst of the worst predator and criminal. What about those who punch in everyday run the same tests and get the same results but keep doing it? They're robbing Us of our life! Any retirement we have is gone. If we're "lucky" enough to reach that age the medical bills will take any nest egg away and fast.

I know I've heard the arguments if they had more money then maybe they could find a cure! The promises of with proper funding in X-Z years there would be a cure! Talk about snake oil salesmen!

One wonders how We became so complacent how we can sit around waiting believing that others are doing their job which if looked at in reality is to work themselves out of the job! Folks they aren't willingly going to do that! Some might be committed to that end but not many. Who do they blame? Others for not PAYING them enough. Through grants and other funding.

I've worked for years trying to spread awareness trying to educate others about Parkinson's Disease. I'm now thinking it's about time to educated Patients about Parkinson's research! It is said about history those who don't learn from it are doomed to relive it (repeat it). If so then isn't it time to learn from failed research? Time to say stop! You're fired! We've tried that and it doesn't work. Time to say no more money for you, no more job until other viable options and other methods are explored. No money until you admit it doesn't work? Congress finally exposed the military over spending for hammers and toilet seats, shouldn't they look into why a test tube costs hundreds of dollars for a lab but you can get 3 in a $30.00 chemistry set? I've been around and seen a lot of things in the past 25 years within this field and disease, it seems to me we keep repeating the research and avenues of such over and over. Promoting it like it's new and unheard of, this is the new magical way to the cure! I believe it's time to listen.......the pied piper is hitting sour notes, see the emperor's got no new clothes! Researchers We want accountability for our dollars!

I'll end my rant now, We're at any given time 1 million strong (patients) adding in caregivers it at least doubles, 2 million voices, yet we sit and wait.

By karolinakitty On 2010.07.13 09:55
Well said ..... Hooray for you ...... I often wonder Al myself about all the research and funding going on. Now i am not as familiar with things over the last 25 years that you have had YOPD, but i too wonder about studies and research.
Like i said in my "wrong" letter to Sen Webb, almost all the studies done on mortality and dementia on done on those who are over the age of 65. Now, i am not trying to be a smart kid at the age of 52, but where are all the studies done of your Yopd folks in regards to Dementia? I haven't been able to find any.

I am giving myself away here but i refuse to give to medical charities or foundations of any kind and i have good reason.
WHen living in Pittsburgh, there is CHildren's Hospital, a great research and learning hospital associated with Pitt and their medical school. They have had some ground breaking things in medicine for kids. One local TV station every year has a telethon for the hospital to raise money to help those who can't afford treatments. Well, many children have been helped through there, mostly foreign, but when it comes to local folks, like myself, i was denied help. WHy? because we "used" to have insurance and because my first husband left his job and we lost the insurance we were denied. My middle child was having seizures of unknown origin and some other issues so we were there quite a bit, ran up lots of doc bills, but they held off billing us until the app went through. Needless to say i was stuck with a hospital bill i couldn't afford and that's when i stopped giving to groups like that.
As you said AL, they charge for stuff, like test tubes that you and i can get cheap, they have salaries that you and i could live off of for years instead of 1 year. Yes they had to go to med school they had to put their time in. But if you are going into the research field, do it with a heart and not a wallet.
Simply put .... the average Joe would not have a job long, if they did what the BIG researchers did on a daily basis.
I used to write grants for my small town.... I'm here to tell you i got lots of grant money for our town with nothing but ... if you'll excuse me..... bullsh*t


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