My great interest in Parkinson's disease began only recently when my loved one suddenly after years of taking Parkinson's medications on a slow slide to pill dependency took a crash all on one day...we find that he had been mistaking his meds either forgetting comletely or doubling up. Also, I know find that most of his problems are now drug related rather than Parkinson's related. After switching doctors due to try to get a better opinion and get answers, I am left with more of the same. A man's life, quality of life is defined moment to moment and can't be understood in a sterile doctors office by asking a series of semi-abstract questions and observing the ability to open and close a hand quickly and checking various other reflexes. However, based on this cursory input a prescription is summarily arrived at, for example Mirapex, Sinemet and Stelevo 5 times a day from dawn to dusk. And the doctors say, don't call us back for a couple of weeks..."let's see what happens it takes time". This is nonsense because these drugs take affect quickly and the changes need to be observed in person by someone trained to look for signs. So although he is now paranoid, hallucinating, suffering from drug induced euphoria, dementia, severe confusion, FoG paralysis, and complete lack of desire to do anything but lay in bed because the dopamine gives you all the reward you can possibly imagine, requiring 24 hour supervision and a small army of medical care professionals practially living in our house, the doctor wants us to wait 13 more days before contacting them. This "Outpatient" treatment model does not suit developing a treatment strategy for Parkinsonism related conditions. Here is what I propose as an alternative. Someone needs to do a kickstarter campaign for the following.

Raise a bunch of money...like one million dollars...grab a young neurology doctor fresh out of med school. Have them sign a ten year contract and set them up in the middle of the woods or the mountain somewhere with a little cabin...like summer camp. When new patients are diagnosed with Parkinson's they are sent to this camp where this fresh doctor(let's call him "The Shaman") Observes them constantly, and has them perform all sorts of activities throughout the day...like summer camp...then adjusts their medications in real time like a shaman. This shaman within a couple years I expect will develop observational intuition not developed with current diagnosis/treatment model for doctors office neurologists. This is the right way to handle these things. Once the shaman thinks the patient has properly adjusted to the new state they can go home. If their conditions change abruptly...they need to go back to the shaman to be adjusted again.

Let me know what you think?

I think I am saddened for you and your loved one. I have no suggestions for a new method of treating parkinson's. Is your loved one being seen by a movement disorders specialist?

Lab Rat,
Hi and welcome.
I went to what I now refer to as a parkinson farm for 2 weeks many yrs ago and Ive got to say it was easily the most depressing and scary place Ive ever been.
It was a hospital that at that time had an MDS who in retrospect probably wanted to publish/promote a drug.
He adjusted meds 'his way.'
The primary drug we ALL left with involved all of us PWP taking a drug which wasn't approved here but could be made available under the special access scheme, anyone remember Tasmar?
Every waking hr we went to the nurses office, those of us physically able to anyway.
They had us do an up an go test which they timed.
In theory this sounds ideal perhaps from a carers point of view.
Anyway just wanted to let you know such places exist and sound good in the brochures but can be bloody awful!
Best wishes.

I went to a neurologist recently and was very dissapointed in her minimal assessment of my pd and the attendent symptoms. In, fact I don't recall her asking any questions about my health. She instructed me to take a couple of steps, had me raise my right arm slowly, and told me to try and make a fist and open my hand repeatidly. This was my "evaluation". Then she handed me a bag full of different samples of all kinds of dopamine agonist drugs. She told me to take each sample until it was used up, then try another, then another. I'm sorry, but this is not a real valid approach and am not sure what taking all these different drugs would accomplish. My neurologist was at best "shooting from the hip". I wont be going back to see her.

you must have gotten more directions than just try them. what exactly did you get?? i've never actually read a post from anyone newly diagnosed saying they got multiple agonist samples. maybe things have changed.

Soccertese, the following are the drugs I was given by my neurologist: 5 sample boxes of Azilect, 7 tablets each, 2 are 0.5 mg and 3 are 1mg. Also, 4 sample boxes of Neupro transdermal patches with 7 to a box. 1 box contains 1 mg patches, 2 boxes are 2mg, and 1 box of 4 mg. Seems like a haphazard approach to me. I was given no other instructions other than just try them. What do you think?

1. azilect is a MAO-B inhibitor, not an agonist, seems like a lot of neuros prescribing it to "newbies"
2. neupro is an agonist patch.

both are quite expensive, i think over $14/day for the therapeutic doses of each so hope you have good insurance.

if you decide to try the meds you obviously take them in ascending strengths. i'd go back to the doc and ask him some questions as to why he selected these drugs and your concerns. i got something like that when first diagnosed, i think it was a MIRAPEX starter kit with very little discussion. after i got home and started researching pd on the internet i asked the neuro a lot of questions and decided to hold off on meds. i wasn't prepared to ask anything at that first visit. not defending neuros but they are incredibly busy, seems the burden is on the patient to get the info that's lacking, that's unfortunately the way it is. of course he could have waited to offer you the samples after you had time to do some research. the 3 MDS's i've met have been pretty cold fishes, gotta have a thick skin to tell people day in and day out you have an incurable, progressive central nervous system disease.

in the bigger scheme of things, treating pd is much more than drugs and i think some MDS's are woefully deficient in getting their patients into exercise, social groups, even into clinical trials. so complain but be your own advocate/researcher.

Thanks for the info on the drugs. May as well not take them for the side effects and the expense if I were to continue taking them. Could have done without the "incurable, progressive CNS disease" part, though. I guess too much reality for me to handle right now. Trying to find a meaning for my life right now and a reason not to be depressed.

i suggest you buy this book or a book geared towards the newly diagnosed.
http://www.amazon.com/Peripatetic-Pu...on%27s+disease
the odds of developing a "cure" or slowing down progression are much better now than when i was diagnosed 12 years ago. cheer up.

exercise, stay informed, join clinical trials if possible - some will pay for you to travel - and even though your're recently diagnosed check out support groups, you might meet people who are doing very interesting things. i'm informed enough that my neuro discusses my treatment options with me.

what keeps me going now is family and friends and a chance of a "cure". i didn't really start to feel major symptoms until year 6.

Actually, I was diagnosed 3 years ago, but have been dealing with symptoms a lot longer than that. Maybe as much as 20 years; depression, muscle soreness, frequent urination at night and lack of energy. Hoping to remain drug free as long as possible but my symptoms are worsening.