Ervin- you wrote:
>>> Ervin McCarthy
<[log in to unmask]> 03/26/98 09:17am
>>>I am curious to know if there are any members who have
chosen to do without drugs in early onset of PD. If there are
it would be interesting to know the results. I see so much
controversy on the list about the various drugs. Is it possible
that anyone has been successful by not starting the
drugs in the early stages.<<<
Ervin:
Two of your terms - "early onset" and "successful" need
definition.
By early onset do you mean the diagnosis of the disease
in a person younger than 40 years old? (referred to as
"Young onset"). Or do you mean the initial period (1+ years)
after diagnosis? I assume the latter. And for "successful"
by delaying treatment - I assume you mean, avoiding adverse
side effects of medication after a period (5 to 10 years) of
medication, such as less motor fluctuations attributed to
extended levodopa therapy?
The typical PWP comes to an M.D. with signs such as
tremor of a hand, diminished hand writing and/or the shuffle
walk. Since medical science cannot verify PD with clinical
tests, doctors are left with the suggestion that the patient
with these symptoms take medication. If the symptoms
improve, the diagnosis of PD is then confirmed. What then?
My informal, unscientific, undocumented survey of various
neurologists over the past seven years is that they use a
flexible concept in prescribing meds: what is the degree of
functional impairment or disability exhibited by the patient,
especially on the job? If the patient describes personal
problems in everyday activities at home or impaired
performance on the job, then the neuro. recommends meds.
This is a type of "If it ain't too broke, then don't fix it, yet."
When the subjective impairment described by the patient
"bothers" the patient, then the neuro. has a choice of meds.
Depending on age, cognitive impairment, ability of the patient
to tolerate certain therapies and the need for neuroprotection
a doctor's and patient's available choices range from
levodopa to selegiline to agonists to COMT inhibitors, or a
combination of meds.
Since doctors do not know why in about 50% of patients
who take levodopa for 5+ years they eventually lose the
benefits and develop motor fluctuations, it is not clear that
delay of treatment with levodopa is called for. Even those
doctors who think that levodopa has a role in the onset of
motor fluctuations, agree that the appearance of significant
functional impairment in job performance and daily activities
demands the use of levodopa.
Those doctors who use a lower threshold of "functional
impairment" believe that the severity and duration of PD
naturally leads to motor complications in patients using
levodopa. They argue that to delay levodopa deprives
patients of better quality of life in the early years of PD.
In the absence of empirical data or clinical studies the
decision by a patient and a doctor when to begin levodopa
therapy is highly personal and individual, based upon the
patient's ability to adjust to the lifestyle changes brought on
by PD.
Good luck with your decision.
Stephan 53/7
