Last week, I gave you information on how to obtain tapes from our
recent PD symposium in Fairfax,VA. I was not able to take notes
because I was doing many things during the meetings, but I was able to
obtain some notes that were taken by somebody else. Here goes!
Dr. Mahlon DeLong - Emory University
Pallidotomy is not a new procedure, however the microelectrode
technique for mapping is new. This technique provides a much more precise
mapping of the part of the brain affected by PD. This is important because
you only want to put small lesions on the nerve fibers leading from the basal
ganglia to the thalamus. The lesions inhibit the brain function that causes
dyskinesias. PD medication therapy continues after the surgery. The benefits
of Pallidotomy appear to last at least for 3-5 years but does not stop the
progression of the disease. After fetal tissue implants and other
experimental procedures questions were raised by the audience, he stated
that they were did not know if the Pallidotomy would prevent one from taking
advantage of other treatments in the future, but it was a possibility.
Dr. William Koller - University of Kansas
About 5% of PD patients are diagnosed before the age of 40.
Most are diagnosed between 50 and 70. There is an effort underway to
recognize symptoms earlier, i.e. a lost or reduced sense of smell as much as
10 years before the classic symptoms appear. By recognizing the disease
early, there is a chance that new drugs being developed might slow or stop
the progression before disability sets in. The prognosis is that the disease
is treatable and will be more so as new drugs come on the market, some as
early as within 3 years.
Dr. David Glosser - Graduate Hospital, Philadelphia
He talked about cognitive difficulties in PD and how they
are evaluated through neuropsych testing. He mentioned groping for words, a
single track thought process, and occasional dementia among PD patients.
Dr. Linda Sigmund - Neurology Center - Fairfax, VA
An excellent talk on the symptoms of PD and the drugs used
to treat these symptoms. There must be a careful analysis of the reactions
to the drugs to gain functional ability and control the side effects. It is
not good to eliminate all symptoms but only enough to maintain a good degree
of functionality; the reason being that drugs tend to lose their
effectiveness. The lower the dose, the better in the long run.
Marilyn Colburn - Lotus Institute of Education - Edgewater, MD
A holistic approach such as is used in the Orient is
advocated; employing the mind, body and spirit as a unit. According to
this belief, 98% of all health problems are stress related. By learning to
totally relax and eliminate stress, even for short periods and being able to
visualize a stress-free life, a lot of health problems will be reduced or
disappear. She conducted relaxation techniques also.
Dr. Ray Watts - Emory University
He talked about new drugs and new delivery approaches being
developed. COMT inhibitors are being developed to block COMT from breaking
down dopamine. Two of these drugs, Entocapone and Tolcapone are expected to
be available in 1 to 3 years. With the use of these drugs, it is
anticipated being able to reduce Sinemet 20-40%. MAO-B inhibitors are also
in the advanced stages of development. These drugs, in the same family as
deprenyl, hold out hope for slowing disease progression. New dopamine
agonists such as Ropinirol are on the horizon and may be longer lasting
thean Sinemet CR. Neuroprotection systems are also being developed that
will provide protection for the neurons that produce dopamine naturally,
from breaking down. New delivery systems are being investigated which run
from skin patches to injections to implanting capsules that release
medication for long periods of time directly into the brain, thus avoiding
the blood-brain barrier.
Donna Dorros - Gaithersburg, MD
Gave an interesting history of her experience as a caregiver
to her husband, Sid, in his later years with PD. She gave several example
of his use of humor in dealing with the disease. She stressed that the
caregiver must also take care of her/himself, have their own
interests/hobbies, and try to do physical exercise frequently.
Gina Bedrosian - Dearborn Heights, Michigan
Advocates PD patients doing exercise daily and she is a
wonderful model. She has had PD for 30 years and no symptoms were evident.
Some of her exercises used yoga techniques, especially for breathing and for
speech, two functions that are closely tied together. You can only talk
when you are exhaling. Walking exercises should include strenghthening the
thighs and swinging the arms. She overcame writing problems by starting
over and relearning as in 1st grade - making big slanted lines, loops, and
swirls, and then letters and putting them into words. It doesn't happen
quickly but but your writing ability can come back. Her greatest exercise
is to have a positive outlook, smile maintain good posture and make lemonade
from your lemons.
A videotape of each speaker is available from CB Video, P.O. Box
2892, Chantilly, VA 22022-2892, (703)385-3740, for $15 each, + $3 shipping cost.
