Psyciatric Symptoms Seconday to Parkinson's Disease; Greetings to Braintalk Veterans
 

Hi all.

I'm a new member to Pscyhcentral Neurotalk but a 10 year parkie and a former poster to Braintalk. I would appreciate it if people who remember me from Braintalk (paula, lindylanka, jaye, etc) would identify themselves.

I stopped posting to Baintalk because I became very ill, as in mentally ill, sometime about three years ago. I was psychotic for eight months, and was a patient (i almost typed prisoner, because it was a lot like being in prison) in a state mental hospital in Independence, Iowa.

A year ago last January, a year and a half ago, I was started on a medication called Zyprexa. Within two days I became lucid. Within two months I returned to Iowa City, my home for most of the time since 1976.

At first I lived in a residental care facility, sort of a nursing home for psychiatric patients. After six months, in November of 2009, I was able to move into an apartment near the downtown, near the library, drug stores, and a grocery store. I am in the process of re-establishing indepent control of my finances. I volunteer three days a week at a Mennonite thrift and gift store, sorting and shelving used books. I meet with friends for coffe and lunch. I go to church and attend church activies.

I have two daughters, age 18 and 20. The 20 year-old lives in Iowa City and I see her two or three days a week, and also see my ex-husband, who also lives in Iowa City, a couple times a week.

It is impossible to overstate how ill I was. I was totally incompetent. Likewise, it is difficult to overstate the magnitude of my improvement. I am intersted in knowing if there are other Parkinson's patient with similar psychiatric issues. My neurologist, a senior faculty at a Big Ten institution, one of the biggest research and teaching hospitals in the country, said that my syndrome was "not rare". I thought he impled it was not common, but frankly I'm puzzled because I don't know of anyone with similar symptoms.

In addition to having been treated for psychosis, I also have had severe anxiety, now in remission, depression, which I am still taking medication for (Effexor has been pretty effective and free of side effects), and hypothyroidsm (which I take Synthroid for; I have never had symptoms of hypothyroidism).

My diagnosis is mood disorder not otherwise specified, psychosis not otherwise spcified, secondary to parkinson's disease.

I look forward to hearing from Braintalk veterans and anyone with a mental illness diagnosis in the aftermath of a parkinson's diagnosis.

Thanks, Barb
I also have dystonia in my feet unpredictably; it's very paimful and disabling and I would welcome suggestions about what people have found to be helpful. I rarly get it in the morning; I more often get it in the evening and it can sideline me for 45 minutes to an hour. It seems to be correlated with taking medication late or at irregular times, but I can do everything by the clock and still have problems. Are there any medications that people have found helpful?

hi barb!
 

How unabashedly honest and right to the point your post is. I know you have a lot to share. welcome back, i don't type so well this late but be back of course.

great discussions going here and i think you might be interested in them.

Amazing Coincidence!!
 

My name is Vicky Lynn (vlhperry) and have posted here for many years. Two days ago I was dragged out of my house screaming and in handcuffs for holding a knife to my stomach, trying to murder my disease. I had been prescribed a very high dose of steroids to clear up a skin infection that was very persistantly creeping up from ankles for two weeks. Add to that the fact that my husband had been "experimenting" with my dose of sinemet by upping my dosage without my knowledge. (Did you notice a difference, honey?) Fortunately after his confession, I knew what was likely happening, and after some primal scream therapy was able to wait out the toxic affects. The paramedic and emergency staff were well trained and actually believed me when I explained the situation to them and trusted me enough to send me home.

I don't know if the episode would have occured with or without PD. I do believe it was exasperated by all the meds I take for my Parkin. I also firmly believe in a strong Pschological component to PD. This was a hot topic just a few weeks ago with much input in the trewad. Indigogo (Carey) is the expert here, in my book, for pschological effects of PD. She has her on site set up exploring this topic called "clogination". try a search for it.

Best of luck getting your life back togeather. Will pray for your recovery.

Hi Barb,
Welcome back to the forum. It has been a long time, and your account of it is honest and straightforward, just as I remember you from way back. I am amazed by your story of how quickly a medication was able to bring you back, and as you say your diagnosis is secondary to Parkinsons and "not rare" I wonder whether it happens to people and we do not hear of it because they drop off the radar and they do not come back, perhaps there are also those who have had a similar experience to you, but maybe not the good fortune to have been treated with something that worked well for them.

I have heard anecdotally of PwP who became what is known over here as 'a handful', and also of sinemet psychosis (from a neuro who insisted I did not have PD and that l-dopa was dangerous). And have a friend who is severely bi-polar, he has a chemical imbalance of dopamine, he makes far too much of the stuff. Just the nicest person, at the mercy of his very unbalanced neurotransmitters. And it is hard not to notice that there are mood changes that come with the drugs that we take, and sometimes they fluctuate just as much as our movement does......

But I am sure you will have wondered about all the possibilities, and for now it is good to hear that you are better, recovering, and re-inhabiting the person you are, claiming back your life. And it is very good to have you back here.........

Best Wishes
Lindy

Dystonia is often caused by wearing off or wearing on, especially the feet and toes, but also can be part of PD. As yours comes on in the evening perhaps it is more related to meds ? A lot of us do get this.......

old friend ---
 

Barb - man, is it good to see you! do you have a phone? PM me and let's talk --

Happy landings!
 

Barb, I'm glad you made it here from my lame directions (or did some other, more lucid resource guide you?). Hope you like our new home.

Jaye

HEY BARB!! I have been looking for you, on and off over the years.
I am SO happy for you!! email me at chasmob@yahooDOTcom!!!
lets talk! you have a phone?

HUGS!!
your pal;
Charlie

Now this may sound stupid: I have had a few strange escapades in my head, including very real encounters with things that apparently do not exist, and it is actually somehow a relief to know that for once, I am not the only one to experience PD as having a fried-brain component. Or am I just selfishly relieved to know that I got off easy compared to some of you.
I had not known, before, just how courageous some of you are. And if I, a Parkie, did not fully understand who you are, imagine how far out of the loop must be some of our neighbors and overlords who really have no clue at all what we go through.
Newsflash: Parkinson's. It's not just shaking hands and shuffling feet.

Hi Barb,

Welcome back!

It doesn't seem possible to send you a private message, which I would like to do? And exchange email addresses.

Muireann

I'm new
 

just trying to understand what is going on with me. I've been on Mirapex for years because of intense RLS. I have noticed that my brain is not functioning properly for a while now, in fact my co-workers joke about my "lame-brain" but lately my emotions have been all over the map and I can't seem to finish a sentence easily or recall simple words. I'm told that sometimes what comes out of my mouth is not what I thought I said...anyway, for a year or so my index finger on my left hand would "twitch" every now and then but now, it always twitches if I'm not using it.....I'm not rigid or stiff....except when I first get out of bed or sit for long periods.... exercise clears that right up...the main thing that worries me is my brain function...I've become compulsive with my spending even tho I swear to myself I won't buy another piece of junk...I can't stick to any decisions I make....I'm a mess....any advice???

myadvice to you is to.........
 

get off mirapex as soon as possible (under your doctors supervision)

All the symptoms you describe are directly attributable to mirapex. Your MDS should have warned you about these side-effects, especially the OCD. Requip should take care of your RLS. How much mirapex do you take?? Mirapex causes OCD in 25% of those who take it.

Charlie

OCD: Ontario Collective Drudgery, I think
 

Charlie, what is OCD?
I never know these things.
Such as, they have one word for freezing and not being able to move and another word for uncontrolled movement, baskets-in-Asia and diet-Keynesians or something, and honestly, I never learned the vocabulary. I am not kidding. I know everything except the facts.

hi Bob;
OCD is obsessive compulsive disorder.

Welcome back
 

Barb,

Welcome back (in several ways) I have asked about your whereabouts many times. Hope you remember me, we came on Braintalk about the same time and met at a PAN conference. I disappeared for several years too for other reasons and was so delighted to return and reacquaint myself with many of the old guys (no offence).

I am so sorry to hear what you have been through but you were a fighter when I knew you before and it sounds like you still are. Congratulations on your triumph.

I too have intense foot and toe curling often relating to activity in the opposite hand and usually when meds are low. I have just begun alternating doses of Requip and Sinemet. 6S 8R 10S 12R and so on. It seems to keep me from running out entirely.. Don't know yet it's too soon to tell.

Anyway, good to have you back.
Pam

forum in 2010
 

I shouldn't get too carried away saying how the forum has changed for the better. Fights [debates yes] are currently non-existent. It's a nice combination of old timers who are wiser and more skilled at just trying not to offend anybody and younger onsets who have intellectual curiosity. religion to any great degree is not viewed as appropriate and Obama's name can barely be mentioned let alone analyzed or criticized. i don't blame the administrators or moderators - they don't always agree with what they have to censor and DocJohn is just trying to run a tight ship. This is a helpful and tolerant forum. When our personality quirks run away from us....you can count on people coming in to stop you. It's just like real life....the right who are christians aren't on the PC list...they remain fair game. Not on my watch, but i don't think about it that much as that is the type of world that has been prophesied about, i have christian friends who don't understand my interest in prophesy. i don't understand how they can't be interested.

So we can't discuss an important factor holding body mind and soul together except briefly and i bite my tongue. i think prophesy is science in action ......obviously there is much out there in space and recently a telescope [much more powerful that hubble] has sent back data that indicates there are many planets out there, solar systems and some are the right distance from a star to resemble earth. The scientist could hardly contain himself.

otherwise this forum , which consistently is there for any and all who ask questions, is pretty much about figuring out as much of the pd puzzle as we can. There are some real "white rats" or patient scientists who look for alternatives to the strong drugs that are now addding to our suffering due to the side effects. A group is writing a book "The Peripatetic Pursuit of Parkinson's". A neurowriters guide to living with Parkinson's. Here's a link to the website that we are building to see an excerpt go here

much more but i'm sure you'll get caught up with others too.

http://www.parkinsonscreativecollective.org/book.html

Paula, I bow down to your spirit
and I send thanks and gratitude to everyone who participates in this site; it's for real here.
Great idea to do the book. It is here that I learned what was happening to me. I was verbose but clueless

verbose and clueless
 

i've been wanting more humor and use to whine about it here and there. it's a vital component too! you are contributing in a big way to getting us past our seriousness and just laugh. Everyone contributes from their individual knowledge, interests and perspective and i rate humor right up in the top few. Can't live without silliness and fun, along with subtle dry self deprecating humor. That is one of the missing ingredients here in this overachieving , perfectionist group of people.

Paula's incisive intuition indicates intelligent insight
 

Gosh, Paula, maybe that's why I don't show up so much around here any lately. I can't think of an analytical explanation for most of what happens to me, and my time constraints are such that I put off the microperception till "later." My vibe-making is terrific, though, and my spirit often soars. I'm downright inspiring to a few people. Maybe with Barb's reappearance I'll have more purpose to my peripaticity. :D

Jaye

And I hope my humor is taken as light-hearted welcoming of an old friend who has returned from a terrible place I could scarcely bear to look into.

it's good to be home
 

thanks to all who posted. it's good to be back. charlie, i hate to say it but you might be on to something. most my trouble started when i was on mirapex, and i was definitely compulsive, in part about internet stuff. i abused my use of time a lot, to the detriment of my family relationships. take care of the people closest to you is my considered advise.

just a little additional medical history, since some people might be interested. i took three different psychiatric meds--clozaril, abilify, and seroquel--before zyprexa worked. the literature that i've been able to find on parkinson's and psychosis (how i despise that word) says that zyprexa is not recommended in PD because of low efficacy and side effects of weight gain and increased risk of diabetes. i was never warned about the side effects and given the seriousness of the symptoms that are being controled i don't think i have much choice about staying on it. i have no temptation to play aroound with my meds.

paula, thanks for the update on the flavor of the forum. i've toned down my inclination to discuss either religion or politics, so will probably manage.

to the rest of you, thanks for the welcome.

barb

Muireann....
 

and charlie...i'd welcome a message from you. i can't post my email address until i have ten posts; i will have five counting this one. be patient and remind me if i seem to have forgotten. cheers, barb

email address
 

Barb,

Although I've been remiss in emailing you (I am in the process of moving, and had a bad drug reaction last week), I have given Charlie and Indigogo your phone number and email address because I was sure you wanted to hear from them. I will do likewise for Muiranne.

Anyone else who wants me to send same, please PM me, and I'll check with Barb and then send them to you.

Jaye

I can hear where you're coming from loud and clear!

A few years before being diagnosed with PD, I was diagnosed with bipolar disorder, one of the mood disorders. I have found that trying to treat both can be a nightmare.

Bipolar disorder is a disorder of dopamine in the brain, and most PD treatments are geared towards increasing dopamine levels/effectiveness in the brain. Unfortunately, all of the medications I've been on (the most recent Stalevo) have thrown my bipolar into total disarray. I cannot reach therapeutic levels of any PD medication before my bipolar gets way out of control. I have to settle for the lesser of two evils- the tremor. Living with uncontrolled or poorly controlled bipolar is the worst experience I have ever lived through.

I too am on Zyprexa which treats the manic part of bipolar disorder. I also take Lamictal for the depression. Traditional antidepressants (Prozac, Paxil, Effexor, etc.) cannot be used in bipolar disorder as they make the condition worse.

Just wanted you to know that you are not alone out there. This has been a great challenge for me, one that I'm still trying to find an answer for. I am a former physician and have access to MedLine and other internet medical resources, and there is almost nothing in the medical literature that talks about treating someone with PD who also has a mood disorder. It's been very disheartening.

The one thing that has angered me has been the reactions of many of the neurologists I've seen with their flippant attitude towards the bipolar disorder. Their universal answer is, "I don't know much about that...that's for your psychiatrist to deal with."

what they don't know..
 

wayne, thanks for posting. i was diagnosed as bipolar at one point, having been both seriously depressed and seriously manic. my diagnosis now is mood disorder nos (not otherwise specified) and psychosis nos. there's no research to speak of so it didn't surprise me that i didn't find much research literature initially but recently an academic librarian helped me and i found a bit more, including one really good review article. i'll post the citation here when i get home. barb

Good to hear from you!
 

Hi Barb!
I have often wondered what happened to you; someone even asked about you not so long ago. I suppose I suffer equally with psychiatric problems as much as I do movement symptoms. But I have never been to a psychiatrist (does it count if your neurologist is Psychiatric Board Certified?)

I won't get into MY mental deficiencies, but just wanted you to know how good it was to hear from you. Let's see, you had two kids, I think. Guess they are grown by now. I have 3 grandchildren!

Staying b usy with advocaacy work (which I should be doiing as we speak).

Let's Skype sometime.
Peggy

Barb and Wayne
 

Barb and Wayne,
Interesting posts from both of you.
I was diagnosed by a psychiatrist a few yrs back as having bipolar disorder.
The diagnosis was made after I told neuro of my sudden manic episodes. Insomnia at my worst had me going 4 nights without any sleep and I love sleeping!
Anyway it took a new and astute neurologist to hear my story and realize it could be the dopamine agonist.
I was on the highest dose of Permax 3 x day (it comes or did previously in 3 strengths.)
After stopping it I was back to my old self thankfully and I stopped the mood stabilising drug Valpro (used for bipolar disorder) soon afterwards.
Did an agonist make a difference to my anti parkinson drug regime? I don't think so.
Since this happened I've been very wary of agonists that's for sure!

Barb, I used to find the dystonia was worse when I went longer than I should without Sinemet on board. DBS fixed the dystonia up since then.

Cheers,
Lee

peggy...
 

it's wonderful to hear from you. i have two daughters, merit and faith, ages 20 and 18. no babies yet, mercifully. faith is finishing high school in minnesota, living with her grandparents. she went through graduation in june, and was one of three commencement speakers. she has to attend summer school to get enough credit to actually get the diploma. i'm totally proud of her for finishing, as she spent a year out of school, working. we hope she will go to college in the fall. merit also stopped out of school, and got a GED. she works for the iowa city school district in an elementary school before and after school program. she's going to chicago this weekend with friends to see a pitchfork concert. i don't have skype capacity but would like to be able to phone you. barb

Barb
 

I will send you a private message and give you my telephone #. :wink:
and what the heck is a "pitchfork contest?" lol

quote "i don't have skype capacity but would like to be able to phone ou. barb"

Peggy

pitchfork concert and citation
 

dear peg: it's a concert promotion group; i'd never heard of it either. merit went to see a group called pavement. i looked them up on utube and didn't like them one little bit. parents aren't supposed to like their kids' music, but i remember when the beatles were considered radical bad boy music.

i intimated that i would post a citation for the article i found on psychosis in parkinson's disease. The offprint directs me to cite it as: Friedman JH, Parkinson's disease psychosis 2010: A review article, Parkinsonism and Related Disorders (2010), doi:10.1016/j.parkreldis.2010.05.004

It's published by Elsevier Scientific.

Alternatives to meds
 

Hello folks,

Nothing's simple, but just to report in that Jan's successfully been using a treatment protocol that's most often used to treat depression (and for weight control!) - in lieu of Sinemet - since last October. Clearly, there's much to be gained by working with amino acids 5HTP, Tyrosine, Cysteine, the others that help balance dopamine, seratonin, etc. Jan's outlook and mental clarity are infinitely better, spirit restored, even though it's a bumpy ride.

With amino acid/mucuna treatment for Parkinson's, the tricky thing is finding how to individualize dosages, and that's also the beauty of it.

Anyhow, I hope you'll look into treatment for brain balancing via this more natural route that's already well in use for depression.

All good wishes!
Trisha