Recently, a fellow
sufferer asked our Parkinson’s Disease community that question. More precisely,
if it seems to be the right time for her to switch to the medication that
provides L-DOPA (levodopa), which is used to increase dopamine concentrations,
and know under the brand names like “Sinemet,
Parcopa, Atamet, Stalevo, Madopar, Prolopa,” and the likes. [Many thanks to
Wikipedia for the information provided in this blog entry!]
Without getting into
too much detail, her question arose primarily because the Parkinson’s symptoms
started to seriously interfere with her ability to fulfill her job. Also, just
like myself, she was sick and tired of the inability to naturally swing the
arms when walking; instead the arms just hang down or they are held in a
slightly angled position.
To me, her question
hits the spot as I myself wonder about such a medication switch every day at
least once. And, just like it is for her, this disease is interfering with my
ability to fulfill my work tasks the way I would like them to be fulfilled. My
handwriting is severely handicapped, my typing somewhat as well, and for a
Business Analyst that is a substantial part of the job. Fortunately, I still
can type and do my work to everybody’s satisfaction (I hope, haha).
My biggest concern
is the fact that these types of meds tend to loose effectiveness over time,
requiring the patient to take stronger dosages and to increase the frequency of
usage. And at some point, the meds will not help anymore at all, requiring a
change in the treatment process all together. So, once I start on these meds,
how much time will I have until it goes downhill, 5 years, 10, 20? Would it be
better to have these years now, or save them til later, and if the latter is
the way to go, then until when do I wait?
Almost as big is my
concern about potential side effects of these meds, they are not easily
dismissed. There is a long list of them, but in particular dyskinesia
seems to be very prominent. Based on Wikipedia “these motor fluctuations occur in more than half of PD patients after
5–10 years of L-DOPA treatment, with the percentage of affected patients
increasing over time”. It further states there that “Therefore, once established, [dyskinesia] is difficult to treat”
and - I could not have said it any better - “patients with the young-onset form of the disease or young-onset
Parkinson's disease (YOPD) are often hesitant to commence L-DOPA therapy until
absolutely necessary for fear of suffering severe dyskinesia later on.”
Yet, without any hesitation, the Parkinson’s Disease community responded to the original question
unanimously with “switch now”, “I wish I had it done earlier”, “switching was
best decision ever” and the like.
Being the worrier that I am, the questions I ask myself over
and over again are: do I suffer now for certain a somewhat more than I have to,
or potentially a lot more later on? And how long will I live anyway, do I save
myself for a time that will never come? And if it comes, how high is my quality
of life at that point, for all I know I may be under the spell of dementia by
then?
I fear the side effects, they hurt and are very disabling,
and I fear the time when the meds will stop working for me even more. But I
also want to feel well and act normal NOW! Maybe I should play a game of “eeny,
meeny, miny, moe …” to figure it out!
Ingo
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