Freda - You wrote "My mother has been diagnosed --------"

You and your father have all of my sympathies, I am caregiver for my
 wife Helen (81/6 years) .  We had an appointment with her neurologist
yesterday, and came out if not happy, at least reconciled to her present
position

Helen's main symptom is progressive tremor, which started  in her left
hand, and has, progressed through to both hands and mouth.  Her initial
treatment was disipal,(orphenadrine hydrochloride).  For a fortnight it
was wonderful - stopped the tremor in its tracks - and we both thought
that if this was Parkinson's we could live with it. However, the tremor
came back, and the side effects of nausea and general illness became
unbearable. Back to other medication, and  at various times she has been
on:-
a) propranolol (a beta blocker - used we understand by snooker players
to reduce their tremor). No effect on Helen's tremor.

b) eldepryl (selegiline), this initially was taken more at our
insistence for its claimed neuroprotection properties, and she stopped
as a result of the BMJ article on its,association with a high mortality
rate. Although I should comment that her tremor has progressed
significantly since she stopped taking it.

c) Madopar CR - this had no discernible effect on the tremor.

d) Procyclidine hydrochloride  this gives some allieviation of the
tremor.

e) Pergolide (permax) patterns of light on the periphery of her vision
- start of hallucinations?. No effect om tremor.

f) Disipal with domperidome - no effect on tremor.

g) Requip (Ropinorole) - initially at  3 X 0.25 mg/day. On the  first
day the tremor was significantly reduced,  but returned  for the rest of
the week;  when she went on to the next stage of  3 X 0.5mg/day there
was no effect until the evening on the first day, when  her whole body
started to shake very violently.  The second and third day  saw the
tremor back
and, if anything, with more force, and she cut back  to 3 X .25mg/day
and then stopped until she saw the neurologist.

This brings me back to the point of this posting. In effect the
neurologist's comment was that she had been there, taken that, and he
had no other medications to offer. She had tried the conventional and
approved  treatments of levodopa and anticholinergic drugs and if these
did little or nothing for her symptoms she was better off not taking
them because of   the  undesirable side effects she suffered.  Only she
could decide if she was getting any benefit, and as none of the drugs
cured Parkinsons, and there was doubt about the neuroprotective
properties of
eldepryl, and concern about  its association with heart failure, it
probably wasn't worth while taking this.

This left a rather bleak picture, as we go to the medics in the
confidence that they have a cure for everything, but his comments to a
simple engineer like my self, started a train of thought. With many
diseases, such as pneumonia, high blood pressure, schizophrenia,
cancer and so on, there is either a cure or something to slow down the
progression of the disease, and it is well worthwhile putting up with
the unpleasantness and side effects of the treatment to gain the
benefits.  However, if at present, there is no cure for Parkinsons, and
no treatment to prevent its progess, and  the available medication  only
treats the symptoms, it opens up a whole new ball game.  Only the
patient can tell if there is benefit being obtained from the medication,
and this should be adjusted by the patient to suit his/her particular
symptoms. As most of these drugs are very potent, and can have serious
side effects, any changes, particularly for increased doses, or for new
medication will  require medical monitoring, as they should be aware of
serious adverse consequences. In any case it must be sensible to make
these gradually so that the body can aclimatise to a new regime.  But
only the patient, or his/her caregiver, can say if the discomfort from
the treatment is
worth the benefits, and it would seem that discontinuing Parkinson
medication will have no effect on the long term outcome. .

When I read of the variation in dose rates which are given on this List,
and  of some of the problems of hallucination etc.,  which  are
described I am left with the query as to how much of the problem  is due
to the disease, and how much is caused by the medication. If the latter,
is the reduction in Parkinson symptoms worth the associated discomfort
of the
treatment, and can this be reduced by the patient optimising the doseage
to suit him/her self?.

All the usual disclaimers apply - I can't afford any expensive legal
action - but I would welcome comments from any one who is more
knowledgable;  after all it is Helen who has Parkinsons, not
me!.
Ray Lakin  ([log in to unmask])