My 70-yo mother was diagnosed with medication-induced Parkinson's a couple of years ago. Medication was delayed for a couple of reasons, including sudden medical issues impacting timing and her neuro appointments. She was doing very well, until she recently had a TI stroke. Going on six months later now, the cognitive effects from the stroke haven't cleared up -- assuming that they will and that the stroke didn't cause pseudo-dementia but actual, permanent dementia.

She has always taken medication for mental health (currently lithium). And even though she's experiencing some minor hallucinations post-stroke, she can't take antipsychotics anymore, mostly due to a life-threatening reaction she had a couple of years ago. My concern is if she were to start on l-dopa and started experiencing the common side effect of hallucinations, what could be done for her since antipsychotics have been ruled out?

I understand l-dopa is the standard drug treatment for PD, but is the hallucination risk worth it for those who are already vulnerable to mental illness?

I plan to pose these questions to her neuro in her next appointment in a few days, but I'd love to know if anyone has had a similar experience or any words of wisdom.

NancyNJ: Her neurologist should order a head/brain M.R.I.
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Reply to Llamalover47

I will second the suggestion from KPWCSC about seeking a Movement Disorder Specialist. If your mother's PD is medication-induced, L-dopa may not be helpful, and the more direct approach might be to replace the medication that causes medication-induced PD. Before starting L-dopa, make sure that her doctors do a DaTscan test to confirm that her brain isn't processing dopamine properly.

My mother was also diagnosed with a Parkinsonism (not Parkinson's disease - just Parkinson's symptoms of uncertain orgin) at age 85. Her primary sympton was that her gait was becoming extremely slow, shuffling, and unsteady. Over the course of about 2 years she went from being able to walk the full length of the local shopping mall unassisted to struggling to rise from her chair and get to the restroom with a walker. It has been heart-breaking. We waited almost a year to get her into the Movement Disorder Clinic at a nearby teaching university, but well worth it, I believe.

She was originally prescribed Sinemet (carbodopa/levadopa) by two different neurologists, but she did not tolerate it well and it didn't help. She was befuddled and exhausted after taking it. Her DaTscan showed that there was nothing abnormal about her dopamine processing, therefore no benefit from Sinemet. It would be particularly important to have a DaTscan before starting L-dope when there is a risk for hallucinations.

In my mother's case, the doctor also explored the possibility of NPH - normal pressure hydrocephalus. It happens when the body doesn't absorb excess spinal fluid and it puts pressure on the brain. It can be seen on an MRI when fluid spaces in the brain look too large, and it causes some types of Parkinsonisms. Sometimes the condition can be treated with a shunt, but first a spinal tap is performed to see if it helps to alleviate the pressure. Even though the doctor still suspects NPH, the spinal tap was not helpful, so she will not be getting a shunt.

Now the doctor from the movement disorder clinic are working with the cardiologist to explore the possibility that one of the medications that she is taking for AFIB (amiodorone) may be causing medication-induced Parkinsonism and determining if there are alternatives available.

We are hopeful that there is still time to improve my mother's quality of life and restore some of her lost mobility. I should say that there is evidence on her most recent imaging of cerebrovascular disease, so improvement may not be possible. However, I am so impressed by way that the doctors at the Movement Disorder clinic are systematically looking at other issues that could contribute to her decline.
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Reply to elcee499
NancyNJ Feb 13, 2024
Thank you for sharing. My Mother has parkinsonism as well, due to long-term use of an antipsychotic. It started out with her walking slower, then leaning forward more, to now (about two years later) needing to use a walker/wheelchair to get about. Her neuro is a movement disorder specialist and has only now been considering prescribing a drug because we've recently noticed some freezing when she walks, though it happens quite infrequently. The doc doesn't want to prescribe L-dopa since she doesn't have typical PD (believes the risks outweigh any benefits). After a failed attempt at slightly increasing her pre-existing Benztropine meds to help with movement, we may be looking to try Pramipexole (Mirapex) next. This makes me nervous considering how badly (cognitively) she reacted to the Benz increase.

Anyway, Godspeed to your Mother. I know it's not easy. I'm familiar with the journey and the desire to have her regain a little of her prior freedom.
if you are not using one, search for a (MDS) movement disorder specialist for a thorough evaluation. An MDS is a neurologist with additional training in movement disorders. A neurologist treats all neuro/brain issues. Most neurologists have not seen as many Parkinson’s patients. An MDS has seen a lot more which means they have seen more variations. PD affects each person uniquely and often other doctors misdiagnose many symptoms.

A neuropsychiatrist is another specialist I would look for. You may need to drive some distance for both specialists but the second opinions will probably prove enlightening.
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Reply to KPWCSC

Has she had a brain scan and has it been read by a neurologist experienced in Parkinson's and vascular dementia to determine what is really going on or is she being diagnosed and treated solely based on symptoms? Your statement "she can't take antipsychotics anymore, mostly due to a life-threatening reaction" rings alarm bells for me that, as Geaton has mentioned, point to Lewy Body dementia, which needs special handling.
Helpful Answer (3)
Reply to cwillie

With PD often comes Lewy Body Syndrome, symptoms of which include hallucinations. So, how will her neurologist know what the source of her hallucinations actually is without taking her off some of the medications? I wish you success in getting answers and proper treatment for your Mom.
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Reply to Geaton777

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