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
