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Old 02-02-2012, 07:17 AM
lindylanka lindylanka is offline
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Join Date: Sep 2006
Posts: 1,271
15 yr Member
lindylanka lindylanka is offline
Senior Member
 
Join Date: Sep 2006
Posts: 1,271
15 yr Member
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You need to be aware that coming off l-dopa is difficult, sometimes very difficult, and ultimately it may only be possible to reduce it to a very small dose. I would certainly have another opinion, and go with Laura's suggestions. There will be hesitation about this kind of reduction of medication - there is little documentation of it, and doctors would naturally be wary. Some of what you mention seems to be a long standing akinesia, very reduced physical movement. Encouragement to move could bring results, though not if it puts you at risk of aggression, perhaps an experienced psychiatric therapist. I would urge you also, though it may be very difficult to do, to always view your mother's condition as one that she is not in control of, even though it may seem otherwise. What you describe is not usual or normal, and therefore she cannot possibly be leading a life with any fulfilment at all. It might seem as if she is choosing to be this way, but it sounds as though she is displaying drug induced behaviours. There is also something there, the stealing, that perhaps could be an compulsion, hard to tell. She sounds very unhappy. I would also not rule out that the pain she says she is experiencing is neuropathic, rather than non-existent. You may have to raise some of these questions yourself, and the one of drug induced schizophrenia. There is also the possibility that reducing the medication will leave her with a type of parkinsonism, anecdotally there is stuff out there that relates to this. From the experiences of people who have come here for help with misdiagnosis issues there are no real experts with this, each case is individual.

Some of the misdiagnosis info you are getting will be about people who nevertheless do have something wrong with them. The Parkinson spectrum covers a number of look-alike disorders that often differentiate into something that doctors recognise and know about at a later date, which are nameable, and not idiopathic Parkinson disease. Equally there will be those that differentiate into completely different disorders, or no disorder at all. All of these would be covered by the term misdiagnosis. Finally, it sounds as though it would be hard for any doctor to evaluate for the difference between psychiatric symptoms, drug effects, and real disorder without working with her for a considerable time. It would be difficult to see how anyone could unravel her problems easily. Having a stable medical course of action to reduce her meds and observe her response, and hopefully treat her for anything that emerged as a result would seem about the best thing to do.

You have a lot on your hands, best wishes with it, for all concerned.
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