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Rose76
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Default Nov 22, 2023 at 02:25 PM
  #21
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Originally Posted by Tart Cherry Jam View Post
Rose, let me message him and ask him what he meant. I got the impression from him that this ability to distinguish between drug-induced Parkinsonism and idiopathic Parkinson's is new. Doctors did not have it in the past. I just did not engage in a discussion about it because in my case it is so clear: I stop the offending drug and the symptoms evaporate. But I will ask him. I am just wondering if what he had in mind is newer than what was described in the tedious literature you tried to read.

I also would like to let you know that it seems to be the case that taking large doses of vitamin B6 plus a regular dose of a B vitamin complex does away with mild Parkinsonism that I experienced on Latuda. I am now switching from Latuda to Vraylar (a starter dose) for completely different reasons, but just in case I will keep taking B vitamins. My psychiatrist researched the issue and recommended B6 to me. I take 350 mg.
It's certainly possible that your neurologist is more on the cutting edge of things than what I was reading. It's also possible that I misconstrued what I skimmed through.

As I understand it, Parkinsons is not easy to diagnose. Just yesterday I heard from a relative whose elderly friend is suspected of maybe having it, but doctors aren't sure. Compare Parkinsons with a CVA or "stroke." Having had a CVA is usually pretty obvious. But the symptoms of Parkinsons can go on for years before the diagnosis is arrived at. At least, that used to be true. Maybe it's changed. Muhammed Ali had what was eventually diagnosed as Parkinsonism, probably related to head trauma. In retrospect, we can now hear on taped interviews that his speech clearly showed neuro-degeneration years before he was given any diagnosis. Perhaps the Parkinson's Syndrome that he displayed was not true Parkinson's disease, but does it really matter? It was disabling and severely worsened over time.

Somewhere in Wikipedia, I read that drug induced Parkinsonism is quite stable and does not progress in severity as does Parkinson's disease, which seems to accord with what your neurologist is saying. Another article from 2012 says that DIP tends to look different in about half the people who have DIP. Then it says that in the other 50 % of patients with known DIP, the symptoms are indistinguishable from true Parkinson's disease. Also, the symptoms may persist for years after discontinuing the offending medication.

I just read that "postural instability" does not present until late in the course of true Parkinson's disease. So, if it occurs as an early feature of a patient's Parkinson-like symptoms, then the disorder is more likely Parkinsonism, rather than actual P.D. That also seems to accord with what your neurologist is saying.

I also just read that persons with DIP usually recover, after stopping the causitive drug, though recovery sometimes takes up to 2 years.

In conclusion, I guess your doctor knows what he's talking about. Still, I'm unconvinced that doctors can always, reliably distinguish Parkinsonism from true Parkinson's disease. It may be that such a distinction is clear in some cases and not so clear in others.
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Default Nov 22, 2023 at 02:30 PM
  #22
TCJ - I just read in 2 places that cigarette smoking reduces the likelihood of developing Parkinsons. I think I'ld stick with the vitamins.
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Default Nov 22, 2023 at 06:03 PM
  #23
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TCJ - I just read in 2 places that cigarette smoking reduces the likelihood of developing Parkinsons. I think I'ld stick with the vitamins.
Oh it is a very popular belief among smokers! Has been for years. They swear by it.

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Default Nov 22, 2023 at 06:15 PM
  #24
I also talked to my neurologist about dance as a therapy for P.D. He agrees that it is very beneficial but does not believe that it slows the progression of the disease. My relative's husband was recently diagnosed (he is in his late 60) and I recommended dancing to him and he will go to a special dance class for P.D. So my neurologist added to that the recommendation of no-contact boxing, again specifically for P.D. See Page not found - Rock Steady Boxing it started in Indianapolis and now is everywhere. And he added a recommendation of a local personal trainer who comes to the homes of patients with P.D. All of these things, per my neurologist, are great to make the disease functionally less debilitating, but they do not slow the progression.

I guess in the end what is important is the burden of the disease, how a person can function and to what extent the person can still enjoy life.

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Default Nov 22, 2023 at 06:57 PM
  #25
This is not about P.D. but about Alzheimer's, but I thought I'd post anyway. The neurologist explained that reading is better than listening to audiobooks because listening is passive. He told me it is OK to listen to audiobooks when I am in the car or when I am falling asleep and there is nothing wrong in audiobooks, but to really engage my brain intellectually, I should read.

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Default Nov 22, 2023 at 10:56 PM
  #26
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Originally Posted by Tart Cherry Jam View Post
This is not about P.D. but about Alzheimer's, but I thought I'd post anyway. The neurologist explained that reading is better than listening to audiobooks because listening is passive. He told me it is OK to listen to audiobooks when I am in the car or when I am falling asleep and there is nothing wrong in audiobooks, but to really engage my brain intellectually, I should read.
Mum died a week before her 95th birthday, she read right up to the end and was mentally sharp.

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Default Nov 23, 2023 at 12:01 AM
  #27
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Originally Posted by Tart Cherry Jam View Post
This is not about P.D. but about Alzheimer's, but I thought I'd post anyway. The neurologist explained that reading is better than listening to audiobooks because listening is passive. He told me it is OK to listen to audiobooks when I am in the car or when I am falling asleep and there is nothing wrong in audiobooks, but to really engage my brain intellectually, I should read.
I've not been a fan of audio books, but I've gotten addicted to listening to lectures and interviews on YouTube. (Especially to fall asleep to.) It started with me wanting to learn the context of world affairs, like the war in Ukraine. These sources provide way, way better information than watching the news on TV. I discovered that our broadcast and cable news is all highly filtered, but that's a whole other subject. These alternative sources of info give me real food for thought, but I guess it is still a passive activity. I need to get back to sitting with a book once in a while. My reading now is all stuff that I Google, which is mostly "skimming" for quick answers. Besides the stronger mental engagement of book reading, which I think your doctor is correct about, I would add writing as a good workout for the mind, particularly if you're writing in an interactive venue like these forums. Therapists used to encourage me to journal, which I found boring and not helpful to my mental health. I couldn't get into it. Doing it, I felt I had no focus. It was just pointless mental meandering. Participating in these MSF threads feels much more like I'm using my brain. A year ago, I started contributing to the "Comments" section that follow YouTube videos. That sometimes leads to interaction that is stimulating. It's also encourages being concise. Lengthy comments get ignored. People aren't there to read essays. Both there and here, I try to study what elicits a response.

I heard that doing math actually improves how the brain is wired. I'm not good at math, but when school forced me to do math exercises, it did make me feel better mentally. Working math problems is like calisthenics for the mind. I wonder if mathematicians have a lower incidence of cognitive impairment when they age.

At least with audio books, you can be doing something else while you listen. Sitting in front of a television screen puts you in a state of passivity that I'm sure can't be good for the brain. It's the ultimate passive activity. You sit motionless and just stare and listen.

Well, I think I'll iron in front of the TV. I've done enough sitting today.
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Default Nov 23, 2023 at 01:20 AM
  #28
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Mum died a week before her 95th birthday, she read right up to the end and was mentally sharp.
My great grandma, too. Lived to 94, died from esophagus cancer, continued reading till the very last day.

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Default Nov 23, 2023 at 01:20 AM
  #29
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Mum died a week before her 95th birthday, she read right up to the end and was mentally sharp.
You have good genes!

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Geodon 40 mg
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Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
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Suspected narcolepsy

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Default Nov 23, 2023 at 01:24 AM
  #30
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Originally Posted by Rose76 View Post
I've not been a fan of audio books, but I've gotten addicted to listening to lectures and interviews on YouTube. (Especially to fall asleep to.) It started with me wanting to learn the context of world affairs, like the war in Ukraine. These sources provide way, way better information than watching the news on TV. I discovered that our broadcast and cable news is all highly filtered, but that's a whole other subject. These alternative sources of info give me real food for thought, but I guess it is still a passive activity. I need to get back to sitting with a book once in a while. My reading now is all stuff that I Google, which is mostly "skimming" for quick answers. Besides the stronger mental engagement of book reading, which I think your doctor is correct about, I would add writing as a good workout for the mind, particularly if you're writing in an interactive venue like these forums. Therapists used to encourage me to journal, which I found boring and not helpful to my mental health. I couldn't get into it. Doing it, I felt I had no focus. It was just pointless mental meandering. Participating in these MSF threads feels much more like I'm using my brain. A year ago, I started contributing to the "Comments" section that follow YouTube videos. That sometimes leads to interaction that is stimulating. It's also encourages being concise. Lengthy comments get ignored. People aren't there to read essays. Both there and here, I try to study what elicits a response.

I heard that doing math actually improves how the brain is wired. I'm not good at math, but when school forced me to do math exercises, it did make me feel better mentally. Working math problems is like calisthenics for the mind. I wonder if mathematicians have a lower incidence of cognitive impairment when they age.

At least with audio books, you can be doing something else while you listen. Sitting in front of a television screen puts you in a state of passivity that I'm sure can't be good for the brain. It's the ultimate passive activity. You sit motionless and just stare and listen.

Well, I think I'll iron in front of the TV. I've done enough sitting today.
I also fall asleep to YouTube and the neurologist said that it is completely OK. I listen to audiobooks when I drive, sometimes when I walk, and when I do cardio, and when I cook. So it is a lot. I need to start reading serious literature.

I am excited that you consider writing, including writing on this forum, a mind-stimulating activity. It definitely is for me, but I did not think of categorizing it this way. Thank you! I have Alzheimer's on both sides of the family and I carry a gene mutation that slightly increases my risk, so anything that can be intellectually stimulating should be a bonus. Yes to writing!

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Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
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Suspected narcolepsy

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Default Dec 24, 2023 at 01:49 AM
  #31
I have talked to my sleep psychologist (a PhD) whom I see infrequently. She is a skeptic and very science-based. She said that she was skeptical about the idea that audiobooks are not as good for us. There simply has not been as nearly as much research into audiobooks, but as a largely unstudied medium, they are not necessarily worse. And she and I talked about how some narrators are so amazing that your mind works at high speed imagining everything that is happening in the book, even more so than you imagine when you read. And imagination can't be a bad thing, right?

Still, I have finally started reading a paper book and I am enjoying it for a change. I have not a read a real thick book in years. It is a non-fiction book, but still.

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Bipolar I w/psychotic features
Last inpatient stay in 2018

Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Default Dec 30, 2023 at 12:32 AM
  #32
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Has anyone heard of cannabis being ordered to help manage depression, anxiety or insomnia? Or has anyone just gone ahead on their own and used cannabis to improve how they feel?

The other night I saw a show on CNN (I think) that spotlighted a medical facility in Israel, where patients with serious medical issues were being treated with medical cannabis. Supposedly, it was doing great things for them mentally and physically. I wonder if cannabis can be helpful for psych problems? I wonder if there is a risk that cannabis can compound a psych problem, making things worse?
@Rose76, coming back to the first post on your thread, I have an acquaintance who swears by it. He says that he has bipolar. I have known him for 10 years, see him probably once a year. He is a credentialed teacher, semi-retired, currently subbing in kindergarten and special ed classes. He is probably in his late 70s or maybe even early 80s. He wears a hearing aid and is still hard on hearing (I am not exactly sure how he is able to manage a classroom with this disability, but at the same time he has the warmest personality, so I see how the kids would adore him). Other than being hard on hearing, he is quite well and sturdy. He is a supplement junkie who only buys groceries from Whole Foods... that type. But whatever works for him and if that allows him to command a classroom of kindergarteners at 80, more power to him. He also is a vocal advocate for social issues and a frequent contributor of letters to the editor at local publications. He has a very active social life. But I am digressing.

He has been using cannabis to treat bipolar. He is somebody who believes that cannabis can cure stage IV cancer. So yes, his beliefs are crazy overall, but in terms of finding treatment for himself, he seems to be pretty effective.

Now, I have never seen his medical records and that "he has bipolar" is based on his own words. I do not know whether that is his valid diagnosis.

***

I have another friend with Bipolar II whose diagnosis is most certainly valid, who is on a cocktail of physician-prescribed medications but who also, on his own but with the physician's endorsement, vapes marijuana, primarily on weekends. I find that he lacks a social life, rarely goes out to events and gatherings, does not do any physical workouts etc., and from what I can see, escapes reality into cannabis-induced pleasant states. But again, whatever works for him. He has been doing it for decades and there has not been any worsening in his bipolar but in fact there have been improvements, most likely due to medication combinations finessed via trial and error.

***

That is all I know from second hand knowledge of people IRL who have been on cannabis with a bipolar diagnosis, except in the first case I do not know if the diagnosis has been properly verified.

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Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
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Suspected narcolepsy

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Default Dec 30, 2023 at 11:26 AM
  #33
I'm finding that cannabis gummies are excellent as sleeping pills.
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Default Dec 30, 2023 at 12:22 PM
  #34
As long as they keep working, enjoy!

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Bipolar I w/psychotic features
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Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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Default Mar 10, 2024 at 06:59 PM
  #35
Line were like little anxiety pills, I so wish they worked. They did help me sleep and when I woke I saw weird geometric patterns.

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Default Mar 10, 2024 at 10:06 PM
  #36
I wonder if anyone has studied how mathematicians age, in terms of cognition. I will ask thr neurologist next time I see him.

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Bipolar I w/psychotic features
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Geodon 40 mg
Seroquel 75 mg
Lybalvi 5 mg as a PRN

Gabapentin 1200 mg, Vitamin B-complex (against extrapyramidal side effects)

Long term side effects from medications some of them discontinued:
- hypothyroidism
- obesity

Suspected narcolepsy

Treated with Ritalin 5mg
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