[robbietu]

In March of 2008 Hot Smoked Pictures, a film production company based in Montreal, approached musician Robbie Tucker with interest in filming a documentary. These are the events leading up to this moment.

Prescribed Destruction - Robbie Tucker

Making music has always been one of the greatest gifts in my life. In 2004 when I started to slowly lose that ability to an eventual 2005 diagnosis of Parkinson's disease, I won't lie it was a little hard to take.

My initial introduction to Parkinson's medication was less then informative. The neurologist who handed me the prescription said he was pretty sure I didn't have the disease because I was too young (28) but to try this drug and come back in a few weeks. Let the games begin!!!

There are currently two drugs in my life, Prolopa and Requip. If I did not have these medications I would be unable to function effectively on a day to day basis. This means the musician/performer/singer/songwriter Robbie Tucker would no longer exist.
Now this is my everyday reality so taking medication is without question a must, right? And the experts who prescribe it should initially be expected to inform a newly diagnosed patient of any unusual or serious side effects right?

Looking back it's clear not only how embarrassingly naive I was but how not being provided with adequate information regarding the life altering side effects I would experience is pathetically unacceptable and exceptionally terrifying.

"Patients should be informed that some patients taking ropinirole (Requip) have shown urges to behave in a way unusual for them. Examples of this are an unusual urge to gamble or increased sexual urges and/or behaviors. If patients or their family notice that they are developing any unusual behaviors, they should talk to their doctor."

Now about a year into being medicated (or my eventual over medicated) I began to have a hard time saving money and sometimes would end up with nothing more than a sucker for lunch. Sounds pretty strange right? Trust me, we're not even half way to strange.

My first neurologist was, to say the very least, difficult to get in touch with but during my effective medicating periods there was no real need to contact him but that was about to change.

Two years after I began treatment the medication and disease started to affect my performance at work as well as my personal life. I became nautious and was vomiting on almost a daily basis which resulted in me being late, absent and having to leave work early on many occasions. I was asked to take a short term leave of absence from my position as CA (Communications Assistant) from Nordia Inc., a company meant to assist the deaf community.

As much as the job was not what one would call satisfying I felt that my life, just two years after being diagnosed was already being taken away from me.

I remember sitting in the sick room crying my eyes out asking myself, "Robbie what is happening to you?"

As the inability to keep cash in my pocket continued, now accompanied with a strange desire for sex, the gradual chemically induced alteration of my character was well underway.

We moved into a beautiful apartment in August of 2007 at which point I began to fall apart at every seam. The level of assistance provided to me by neurologist seemed to vanish and was replaced by nothing more then sheer frustration. It's no surprise that I switched neurologists.

As my condition worsened I began to feel cornered and took the next step in applying for long term disability. Not surprising there is allot of paperwork involved. Paperwork from my employer, me and most important to the insurance company (Sunlife Financial) from my doctor. I dropped off the required forms for my neurologist to complete a month before I began calling his office. The conversations went routinely like this.

"Hello this is Robbie Tucker, did Pierre fill out the disability forms I dropped off?"
"I don't know Robbie, he just came back from vacation and he is very busy"
"Well, could you maybe leave him a message and tell him I need him to call me?"

or

"Hello this is Robbie Tucker, do you think it's possible for Pierre to call me back I need those disability forms filled out?!"
"He is very busy today Robbie our office is full"
"But I am running out of money, food and medication do you think it's possible that he might call me back?"

Keep in mind that by this time my short term coverage has run out and I am living off of my boyfriend, aunt and father. Without these three people I am not sure what I would have done or what might of happened to me.

I called, re-called and called again. Each time getting more and more frustrated eventually giving up to call my friend John Provenzano at The Parkinson's Society of Canada. After I explained to him that I could not get my neurologist to call me back he made a call to The Parkinson's Society of Quebec as apparently a good friend of my neurologist was working there, and like magic!!! The very next day the phone rang and to my extreme surprise it's my neurologist! He quickly informs me that not only had he not had the time to fill out the disability form but in fact would not be filling them out at all because there was no chance that the insurance company would ever approve them.

"You're too young Mr. Tucker." Maybe your new neurologist should fill them out. Click. End of conversation.

This is the man who treated my symptoms from the beginning stages until June of 2007. Is it really acceptable for him to make an assumption that my insurance company will deny my submission for benefits based on my age? Especially when the only reason he gave was that he didn't want to waste his time.

I called my new neurologist and had almost the same conversation with her secretary but this time the conversation went more like this.

"Hello this is Robbie Tucker and it's really important that I speak with my neurologist because I need her to fill out some disability forms"
"She is very busy you'll need to call when her assistant is back from vacation"
"No, I need this done because my old neurologist refused to fill them out and I have no money for rent, food or medication"
"You'll need to call back when her assistant comes back Robbie"
"No, I have a better idea. Remove me from your computer as one of her patients. It's clear that none of you care even the tiniest amount for my health, safety or well being."

Click.

Not even 5 minutes goes by before my neurologist herself calls me back.

"Robbie, what seems to be the problem?"

At this point I'm not the friendliest person to speak to on the phone but friendly didn't seem to be working. Seems like I had to get really angry in order to get what I needed. It doesn't really seem like the best way to get the point across; however it did have the disability papers on their way to the insurance company later that afternoon.

In November of 2007 I was becoming desperate to get off Requip as my then current dosage continued to make me nauseous, dizzy and at times so hyped up one would think I had spent the last three days drinking coffee. As well my inability to save or stop spending money was completely out of control as well I was sleeping with more random strangers then anyone could possibly deem acceptable. I had pawned my electric guitar, bass, mandolin, piano, amplifier, microphones and anything else that wasn't nailed to the floor. At the best of times I was confused, obsessed, depressed, exhausted and so unbearably ashamed of the things I was doing that I became a completely different person.

Not long before I was scheduled to speak at an event organized by The Parkinson's Society of Canada I changed medication and if I really wanted to I could write a whole story just on this. I think a good title would be,

Requip to Mirapex, How to make matters worse in one easy step!

"Patients treated with Mirapex® (pramipexole dihydrochloride) tablets have reported
falling asleep while engaged in activities of daily living, including the operation of motor vehicles which sometimes resulted in accidents. Although many of these patients reported somnolence while on MIRAPEX tablets, some perceived that they had no warning signs such as excessive drowsiness, and believed that they were alert
immediately prior to the event."

Once again the lack of information provided to me by my neurologist and pharmacist before handing me the medication, resulted in "falling asleep while engaged in activities of daily living". While in a computer cafe checking my email and account balance, Ifell asleep and I missed my plane home to Montreal and was trapped in Toronto for two extra days.

I understand now more then ever that it's my responsibility to know as much as possible about the medication I am taking, but all things considered, a heads up maybe? Especially in my severely over medicated character fractured state it might have been helpful. Luckily I don't own a car because I'd hate to have fallen asleep on the highway from Montreal to Toronto at 110KM/hr. I'm also pretty sure you'd hate to be on the receiving end of my "falling asleep while engaged in activities of daily living".

I realized I would be spending 2 extra days in Toronto and so I decided to get a hotel room. Now that seems pretty reasonable, right? Well in theory yes but looking back at the $250.00 I paid for one night in a mediocre hotel it would seem that my ability to make adequate decisions was quickly fading. The next day I went to a computer cafe and purchased my ticket home using my credit card (1 of 3, all of which are currently over their limit) but what I didn't know s that I was only holding the ticket and nothing had been charged to the card.

I got in touch with my ex-boyfriend who said it would be no problem to stay with him for the night. Unfortunately as time went by I was starting to experience more and more side effects from the new medication and began to experiencing heavy dyskinesia and hallucinations.

I didn't exactly connect with my ex-boyfriend. Instead I went to the wrong meeting place, sat down on the floor to wait for him only to jolted out of my "falling asleep while engaged in activities of daily living" by the broom and loud voice of the TTC security.

To make matters worse the bank had frozen all my credit cards and accounts due to suspected fraudulent activities so the ticket I placed on hold using my credit was declined. I tried explaining my situation to the friendly faces at Via Rail, offering all my contact information, driver's license, medicare card and even called to get the credit card number of my boyfriend. I must have seemed a little crazy because instead of letting me on the train the friendly faces at Via Rail escorted me out of the building.

I thought to myself, I should go to the CBC radio station and tell them what had just happened. It seemed like a good idea at the time but in my half medicated hallucinating state I couldn't find the building. It's no surprise since at that point I was confusing the streets of Toronto with the streets of Montreal.

No matter how far up Yonge Street you go you'll never find Mont-Royal.

During my 2 - 3 months on Mirapex I successfully accomplished the following tasks.

1. I somehow managed to do an interview and perform live on CBC Radio though looking back I'm not sure how.
2. I accidentally deleted the lyrics for 100 songs that I had written over the years.
3. I Promised The Parkinson's Society of Canada that I would raise $1,000,000.00.
4. I spent all day, every day working on websites. Obsessively changing them again and again and again and again and again and again.
5. I contemplated suicide, more then once.

Since my switch to Mirapex was less than pleasant I felt I had no choice but to switch back to Requip.

In the beginning of 2008 I started working on a new idea, MAPMusic ((( Musicians Against Parkinson's )))

In February of 2008 I met with a filmmaker over breakfast. The topic of discussion? I wanted to film some Public Service Announcements for MAPMusic but also spoke to her about the new Awareness Concert that I was trying to put together.

Before I continue, I think that this might be the perfect time to mention something. During a recent visit to a psychiatrist and after explaining to him all of the things that had happened to me, he asked if I knew that the opposite of Parkinson's is schizophrenia? That in fact Parkinson's is caused by NOT ENOUGH dopamine and schizophrenia is caused by TOO MUCH dopamine. Okay, that's interesting and also information I could of used MONTHS AGO!!!

Moving on...

By this point I am starting to feel like I may have a personality disorder. I am sleeping only 3 - 4 hours a night finding it almost impossible to rest. I am biking around parks in Montreal at 4 in the morning completely exhausted looking for people to have sex with. It's clear that by this time Robbie Tucker is dead.

Prescribed Destruction Text Ends as filming of documentary Musically Medicated begins.

[chasmo]

you need to get to a GOOD MDS (Movement Disorder Specialist) for your care. There are pharamalogical alternatives to living with Obessive Compulsive Disorder. Regular neurologists usually do not have a clue how to work with Parkinson's patients.
Sounds like a great documentary though!

Charlie DX'ed with PD in 1990 at age 40. Bilateral DBS/STN at UCLA in 2002

[paula_w]

Welcome and Wow!

Your experience describes so vividly what young onset pwp are going through. Although gambling and sex are the "sexy" things to bring out and certainly among the most devastating behaviors, there are other behaviors that are very hard on us and the people around us. I can so relate to your changing your website. I used to have one and had just scored an interview with Dr. Ole Isacson, a leading stem cell researcher at Harvard. For some impulsive reason, I decided to redesign the site and it was 6 months- half a year! - before I put that interview up. I was taking 16 mg of requip with sinemet and skipped many a night's sleep, even staying up two nights sometimes. It was madness.

Bizarre behaviors are an integral part of the illness. For awhile my family blew apart. I am blessed that we have finally started to undo some of the damage and become a unit again. Motor symptoms are not the hardest part of PD for many many years. The head battle will get you if you aren't careful.

thanks for sharing,
paula

[reverett123]

With all the talk about a database and so on, a few hundred detailed accounts like that one would be a good start.

[paula_w]

If schizophrenia is too much dopamine, and is considered a mental disorder or mental health condition, two things come to mind about that. One is- is PD logically also a mental health condition [ along with other symptoms - movment being the main one of course]?

And the other is that what I've been referring to as "sinemet madness," by the dinner hour every day may be describing it more accurately than I thought.

I think I am going to look up all of the symptoms of schizophrenia to see if I have any of them after taking sinemet every two hours. I don't have auditory hallucinations or anything like that. But there may be some other factors.

If any psychiatrists or others in the know are in the forum with enlightenment, I would appreciate your comments.

paula

[paula_w]

Except for hallucinations, I've got them all I think.

Am I the only one? I don't have a good feeling about this.

paula

http://www.nimh.nih.gov/health/publi...ophrenia.shtml

[Ibken]

Originally Posted by paula_w

Except for hallucinations, I've got them all I think.

Am I the only one? I don't have a good feeling about this.

paula

http://www.nimh.nih.gov/health/publi...ophrenia.shtml

me too, paula. it was already cold here and reading that gave me chills on top of chills.

i feel posessed! where can we go? what can we do? this bad dream is turning into a nightmare.

this is NOT a good way to start the day. well, when i take my first dose, i can expect to feel a little better, right?

the plot thickens.............

ibby

[paula_w]

I'm sorry you are going thru this too ibby. Jaye was looking up things like sinemet psychosis last night on pub med but said the words were so big she didn't recommend reading them then...lol

I have read of others experiences here occasionally with "break downs" so to speak due to sinemet. Logic tells me that I need to go to the MDS and a neuro-psych. I wonder if we will hear anything but get a DBS?

DBS does not guarantee no sinemet tho.

I think we are backed into a corner. How to stay positive? I can only come up with twisted humor, as everything else is twisted. It's not like I can tell you to 'have a nice day'. I can thank you for your honesty and empathy and I do!

paula

[paula_w]

How's this for timing. Linda H. emailed this today. Question is, are they saying PD causes this or our meds? I think it's meds, and what they are describing sounds like schizophrenia from too much dopamine. Admit I haven't gone to website yet.

PRESS RELEASE
Parkinson's Disease Can Affect More Than Just the Body: Online Survey Finds Many Patients and Caregivers Unprepared for the Mental and Behavioral Changes Associated With the Disease

Phase III Clinical Research Study Recruiting People With Parkinson's Disease Experiencing Mental and Behavioral Changes

Last update: 1:36 p.m. EST Dec. 10, 200

KING OF PRUSSIA, PA, Dec 10, 2008 (MARKET WIRE via COMTEX) -- Parkinson's disease affects 6.3 million people worldwide. While the disease is recognized for its profound effects on movement, up to 40 percent of Parkinson's disease patients also develop changes in thought, behavior and judgment.
As Parkinson's disease progresses, patients may experience what is called 'Parkinson's Psychosis,' in which they experience changes in thought, behavior and judgment. In more advanced stages these symptoms include hallucinations where patients see, hear or feel things that aren't really there, and paranoid delusions where they become distrustful of even their closest friends and family members. The emergence of these symptoms represents a major turning point in the course of the patient's disease.
"While the physical manifestations of Parkinson's disease are difficult to deal with, the changes in thought, behavior and judgment strain the bonds between patients and their caregivers and families," said Dr. Bernard Ravina, Director of the Movement and Inherited Neurological Disorders Unit at the University of Rochester in New York.
According to an on-line survey recently conducted by MediciGlobal, a global patient recruitment and retention specialty firm, over one-third of Parkinson's caregivers are unaware that changes in thought, behavior, and judgment can accompany the disease. "As a registered nurse, I was prepared for the physical problems with my husband's Parkinson's disease but, despite my job as a RN, I was totally unprepared for the psychiatric issues," said Carol McLain, a caregiver who took the survey.
According to Dr. Ravina, "It's the non-physical symptoms of the disease that are often most devastating for both the patient and caregiver. As the patient's mental health deteriorates, the family often has to make the painful and expensive decision of moving the patient into a nursing home."
There are currently no FDA-approved treatments for these particular non-physical symptoms of Parkinson's disease. Nevertheless, doctors often resort to the use of potent antipsychotic drugs to treat these symptoms even though these drugs sometimes have serious side effects, particularly in the elderly, including worsening of motor skills, excessive sleepiness, increased infections, stroke, and sudden death in some patients. As a result, there is a large unmet medical need for new and improved treatment options.
A clinical trial is currently recruiting people with changes in thought, behavior and judgment related to Parkinson's disease to test whether their condition can be treated safely and effectively with a new investigational drug. The clinical trial, which is being conducted in countries around the world, focuses on men and women who are at least 40 years of age, have an established diagnosis of Parkinson's disease, and are currently experiencing changes in thought, behavior or judgment.
Those caring for someone who may be experiencing changes in thought, behavior and judgment associated with Parkinson's disease are encouraged to call the toll-free study hotline directly at 1-866-565-0261 or visit the web site at www.ParkinsonsMindStudy.com to learn more about this clinical trial.

For further information, contact:
Leigh Fazzina
484-674-6855
Email Contact

http://www.marketwatch.com/news/story/Parkinsons-Disease-Can-Affect-More/story.aspx?guid=%7BB474EAA1-9DB0-4E4C-A19C-F0EC650CC89C%7D

and

http://www.parkinsonsmindstudy.com/

paula

________________________________________________

[lurkingforacure]

I am wondering this also, have been for awhile. If anyone knows/knew an old timer who got or was dx'd with PD before they really started prescribing heaps of meds, and if so, did they have mental issues like this? Maybe the easier way to find this out is to see what the old, old research files say, like from 40-50 years ago before levodopa became so widespread...did those folks have these mental issues? Boy, that sure would be interesting to see what the literature revealed. I can try to delve into that with all the free time I have! lol

Our neuro (the one who called in the wrong size pill) said that meds don't cause the mental issues, it's the disease. When I asked him about patients who seemed to develop dementia/mental problems within weeks or months of starting this drug or that, he dismissed me and told me that the dementia was "there all along, the drugs just exposed it"....yeah, right. My thoughts exactly.

I posted a thread some time ago about one of the drug classes causing mental decline, I think it was the anticholinergics but am not sure. I have also read a story about an elderly lady who began a bunch of meds and once they began building up in her system, she declined mentally and was dx'd with Alzheimer's. Tragic. However, her daughter, I think it was, became suspicious and took her mother off the drugs, incredibly, her mother's mental capacity returned.

I'll share what I find from the medical archives-if someone has already researched the old archives, let me know. I'm thinking I start with "presenting symptoms" or "symptoms" for PD from about say 1900 to 1950, that should give a pretty good idea.