Parkinson’s or something else?
December 22, 2019 3:02 AM Subscribe
A relative has been diagnosed with Parkinson’s. The symptoms are very atypical and I am having a hard time finding more information that might useful.
The person is a man in his seventies who has previously had a relatively active life and interests. After some sort of aggressive outburst which was very frightening he was hospitalized for a period while they established what had happened. There seems to be no organic damage, not a stroke not a tumor and they say no psychiatric grounds. There has been a scan that gave a definitive diagnosis of Parkinson’s. There are no motor symptoms, the only real symptoms seen now while he was in hospital and now has some home are extreme apathy. Sitting in a chair paging through a magazine, eating what is provided, saying hello back but no other attempt to converse, barely responding to questions. I am most reminded of my grandmother when she was very old and would just reply “oh yes, that’s nice” to whatever you said more or less.
The situation is very concerning, and I would love to be able to point them in some direction to look for better help or occupational therapy or anything. They went to a Parkinson’s center but everyone was very motorically disturbed but otherwise fine mentally, so it didn’t really help.
The person is a man in his seventies who has previously had a relatively active life and interests. After some sort of aggressive outburst which was very frightening he was hospitalized for a period while they established what had happened. There seems to be no organic damage, not a stroke not a tumor and they say no psychiatric grounds. There has been a scan that gave a definitive diagnosis of Parkinson’s. There are no motor symptoms, the only real symptoms seen now while he was in hospital and now has some home are extreme apathy. Sitting in a chair paging through a magazine, eating what is provided, saying hello back but no other attempt to converse, barely responding to questions. I am most reminded of my grandmother when she was very old and would just reply “oh yes, that’s nice” to whatever you said more or less.
The situation is very concerning, and I would love to be able to point them in some direction to look for better help or occupational therapy or anything. They went to a Parkinson’s center but everyone was very motorically disturbed but otherwise fine mentally, so it didn’t really help.
Sorry I didn't finish the comment - to sum it up it is super super normal and I bet if they were to join neurotalk or another online support group they would see similar stories.
posted by pintapicasso at 5:01 AM on December 22, 2019 [1 favorite]
posted by pintapicasso at 5:01 AM on December 22, 2019 [1 favorite]
Also lewy body dementia is another diagnosis that neurologists consider. But this is like the tip of an iceberg that is 20 miles deep, neurology is nuanced and complicated and the neurologist has lots of experience and education to back her and will be the biggest resource to you all.
posted by pintapicasso at 5:05 AM on December 22, 2019 [4 favorites]
posted by pintapicasso at 5:05 AM on December 22, 2019 [4 favorites]
I’m so sorry you and your family are experiencing this. Difficulty with diagnosing neurological conditions is very common since, as pintapicasso said, neurology is complicated and we don’t know nearly enough about why a lot of conditions have the symptoms they do. I would seek a more extensive neurological work up (instead of a Parkinson’s center)
IANAneurologist, but this link on Lewy Body Dementia vs Parkinson’s might be helpful....LBD is very closely related to Parkinson’s but the cognitive symptoms (including apathy, outbursts, and big fluctuations in level of symptoms displayed day to day) appear before the motor symptoms do.
posted by assenav at 5:26 AM on December 22, 2019 [2 favorites]
IANAneurologist, but this link on Lewy Body Dementia vs Parkinson’s might be helpful....LBD is very closely related to Parkinson’s but the cognitive symptoms (including apathy, outbursts, and big fluctuations in level of symptoms displayed day to day) appear before the motor symptoms do.
posted by assenav at 5:26 AM on December 22, 2019 [2 favorites]
Are they seeing a neurologist? There is no scan that "definitively" shows PD; anyone who told you that doesn't know what they are talking about. There is something called a DATScan, which looks at dopamine integrity in the brain, but it does not distinguish between PD and several other causes of dopamine deficiency.
Many of the cousins/mimics of PD are extremely rare -- I didn't see a single case of corticobasal syndrome till fellowship. Note that sometimes the motor features can be subtle and hard to pick up unless you know what you are looking for. But if your relative is not seeing a neurologist, ideally someone who specializes in PD and its cousins, please advocate for a referral.
Good online sources of info include the Michael J Fox Foundation, the Parkinson Foundation, and the International Movement Disorders Society. On phone so hard to link. Feel free to memail me as well.
posted by basalganglia at 8:58 AM on December 22, 2019 [11 favorites]
Many of the cousins/mimics of PD are extremely rare -- I didn't see a single case of corticobasal syndrome till fellowship. Note that sometimes the motor features can be subtle and hard to pick up unless you know what you are looking for. But if your relative is not seeing a neurologist, ideally someone who specializes in PD and its cousins, please advocate for a referral.
Good online sources of info include the Michael J Fox Foundation, the Parkinson Foundation, and the International Movement Disorders Society. On phone so hard to link. Feel free to memail me as well.
posted by basalganglia at 8:58 AM on December 22, 2019 [11 favorites]
basalganglia is correct and more knowledgeable than I am on the subject, but to supplement what she said: as far as I know there is no "definitive" way to diagnose PD based on a scan. The classic motor symptoms (tremor, difficulty initiating movement, etc) are pretty characteristic but "definitive" diagnosis only really comes from looking at the brain post mortem.
That said, not all PD patients have the typical set of motor symptoms. My grandfather died of PD, and his symptoms were more cognitive than motor at first. He never had a strong tremor and it took a while after his diagnosis before his difficulty initiating intentional movements became pronounced. When he was first diagnosed I would never have guessed that that's what was wrong, but his neurologist clearly was able to pick up on things about his movement that his family couldn't.
posted by biogeo at 3:32 PM on December 23, 2019 [1 favorite]
That said, not all PD patients have the typical set of motor symptoms. My grandfather died of PD, and his symptoms were more cognitive than motor at first. He never had a strong tremor and it took a while after his diagnosis before his difficulty initiating intentional movements became pronounced. When he was first diagnosed I would never have guessed that that's what was wrong, but his neurologist clearly was able to pick up on things about his movement that his family couldn't.
posted by biogeo at 3:32 PM on December 23, 2019 [1 favorite]
Response by poster: Thanks for this information all, it's going to give me some good places to continue looking.
posted by Iteki at 7:22 AM on December 24, 2019
posted by Iteki at 7:22 AM on December 24, 2019
There's a subreddit for PD that might be another place to ask. Best to you all.
posted by slidell at 9:54 AM on December 24, 2019
posted by slidell at 9:54 AM on December 24, 2019
If you want to dig into research articles, Dr Mitish Lotia (University of Arkansas for Medical Sciences) is my uncle’s neurologist and has published articles. Uncle has Parkinson’s with movement symptoms but also some atypical symptoms and Dr Lotia has a strong interest in researching the atypical symptoms (he enrolled my uncle and my dad in one of his studies looking at the heritability of Parkinson’s or something like that...dad has zero symptoms). My uncle’s first symptom (prior to anything else showing up) was when he could no longer do math in his head, something he was previously really good at.
Parkinson’s is complex and it can be quite difficult to dial in the meds and even then it may not control all symptoms. There’s definitely a psych component to it.
posted by MultiFaceted at 5:02 PM on December 25, 2019
Parkinson’s is complex and it can be quite difficult to dial in the meds and even then it may not control all symptoms. There’s definitely a psych component to it.
posted by MultiFaceted at 5:02 PM on December 25, 2019
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posted by pintapicasso at 4:59 AM on December 22, 2019 [2 favorites]