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The easiest way to become a volunteer in Parkinson's medical research is to contact an American Parkinson Disease Association Information & referral office [toll free 1-888-400-2732] to see what studies are being done or are to be done in your area. The same sort of service may be obtained from the National Parkinson Foundation and the Parkinson Disease Foundation. There may be nothing going on that you will fit into now, but there will be "a fit" sometime. Many research projects want people who are recently diagnosed and have not started PD medications, or people who have hallucinations, or people who have PD and relatives with PD, right-handed red haired people of Bulgarian ancestry under 30 from eastern Arkansas whose left side is primarily affected, etc. [The last one is totally fictitious, but illustrates possible inclusion and exclusion parameters]. Researchers want subjects who are interested in what is being done, are willing to work with the researchers, and are pretty good at noticing changes. Once you go through a research study and work well with the researchers, you have a high probability of being asked to participate in other projects by the research person you worked with before AND others who are friends of that researcher. The word gets around. Also, read the APDA, NPF, and PDF newsletters. If you see a research project just getting started and think you might fit, call the researcher. One other thing, get your medical records together so you can answer the myriad of questions you will be asked. Will Will Johnnston A.P.D.A. DelMarVA Chapter Pres. 4049 Oakland School Road Salisbury MD 21804 USA 410-543-0110 ---------- From: Joan Hartman <[log in to unmask]> To: [log in to unmask] Subject: Re: Advocates & More Advocates Date: Thursday, October 14, 1999 9:14 PM Will, how do you go about finding info on volunteering for these research projects...Joan ----- Original Message ----- From: will johnston <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, October 13, 1999 8:57 AM Subject: Advocates & More Advocates > Walter Huegel said: > The group that seems to be missing as public advocates for PD research > are the researcher, clinicians and doctors who are involved with PD > research and treatment. Is it my impression that they seem to be above the > fray? If so, how can they become involved? > > I would add: > > There is another group: The patient-participants who volunteer themselves > in various PD studies funded by the government [primarily through the > N.I.H. / Congressional appropriations / Udall Act] and by private > institutions [A.P.D.A., N.P.F., P.D.F., etc.], pharmaceutical companies, > and individuals. > > I am in that group. I feel that I am getting the best care and treatment > available as a reward for what I am doing. There is cost to me in the form > of time spent, usually travel expense which may include a hotel stay, and > an unknown probability of damage resulting from a bad result which could > come from any medical treatment. My benefits are worth the cost to me. > The possible benefit to all PD patients makes the government and private > expenditures seem small, very small when one thinks of the million plus > people in the U.S. and insignificant when one considers the PD patients all > over the world and the Parkinson people in the generations to come. > > Currently I am in three studies with N.I.H. funding at Johns Hopkins > Hospital in Baltimore, in the 65th month of a drug study at Robert Wood > Johnson Medical School in New Brunswick, New Jersey, [financed by Orion > Pharma of Espoo, Finland], helping design and set-up a Parkinson's disease > exercise and physica therapy study with master's degree students at the > University of Maryland [Eastern Shore Campus] in Princess Anne, Maryland, > and doing one study on my own. > > I am also seeing contributions of brain tissue at autopsy of PD patients > for a study being done at Johns Hopkins. There is no cost to the donors' > families or estates. Congress cannot provide this tool for research for > us. We have to make that contribution ourselves. > > Will Johnnston > A.P.D.A. DelMarVA Chapter Pres. > 4049 Oakland School Road > Salisbury MD 21804 USA 410-543-0110 >