Today I spent my morning at a research department at the University. I had read of the need for control subjects for Parkinson research and I volunteered. Today I had blood drawn and answered many questions and took many tests. (I am happy to report that I passed the cognitive impairment screening with flying colors.)
Today's goal was to establish that I am a suitable "control" -- that I do not have early signs of Parkinson's or other disqualifying conditions. If the bloodwork all checks out, I will go back in two weeks to provide more blood and also spinal fluid, for research purposes. I am not looking forward to the spinal tap, but I am glad to be able to contribute.
This study will involve 120 people with Parkinson's and 120 controls. The purpose is to try to identify biomarkers that are unique to those with Parkinson's. Early and accurate detection can lead to early and effective treatment and perhaps prevention of symptoms. This research will be done at 5 centers. It is sponsored by the Michael J Fox Foundation.
I share this with you because I think it is important to know that many, many research projects are going on all over the world, to try to solve the dreadful mysteries of chronic conditions. Someone does care.
I also participate in several long term studies that are just questionnaires every year about my lifestyle and health. I think they intend to study people over 20-30 years. If you're in Illinois, you can sign up here: https://whr.northwestern.edu/
Sorry Jeannie could not resist.
One tip is that is doesn't always cost money to help out. In my mother's case, her insurance covered her eye exam for the participation. But in my case, I did not have the insurance to cover the test for the MRI for the jaw issue and I couldn't afford it -- I was offered the MRI as part of a study by my doctor. In my CF friend's case, he has had doctor's offer him to be in studies but he has had to do a lot of research on his own to find out how he can participate to give baselines for future CF sufferers.
I'm just saying that there are many ways to be part of a study when you have a special condition if you really want to give your time to it. Sometimes, your doctor will know about the studies, but other times you have to research on your own.
heck yea jeanne. medicine is about to take off as the entire human genome chart is completed. future meds will be genetically customized for the individual but it requires pioneers who will get involved in studies for the betterment of the human race and the potential for cures for themselves.
My grandfather was diagnosed with Parkinson's, probably about 1960. He passed in 1963, but not from the disease. He had gone in for surgery, don't know what, but something simple. He got out of bed, fell, developed a blood clot that went to his lung and killed him. Probably was a better way to go than the downward spiral of Parkinson's.
Good luck with the spinal tap. I sure wouldn't look forward to it either.