I read your post with great empathy. PD is hard on families, especially when you don't understand b/c you haven't taken the drugs yourself and you're awash in a sea of doctors, drugs, and opinions. I am sorry also that your Mom is having so much trouble.

I was diagnosed in 2001 before all the legalese about mirapex was stuffed into their commercials. I had a HORRIBLE reaction to mirapex. The hyper-sexuality, shopping (10's of thousands), the hallucinations, and a few other unpleasantries. My doctor told me many many times I was making up side effects, had read about them and projected them onto myself, or that I was flat out lying. There is a great tendency IMHO and experience of treating pwp and older people as less than people and with little compassion.

There are many more kinds of meds that ur Mom could try. Personally I have found that less is more. When you start poly-pharming people you start getting side effects, which begets more drugs and more symptoms, and side effects. This creates it’s own illness in essence. Trying things to “see” if they work is hard on a brain.

I see a lot in the forums about the bad effects of agonists and sinemet. Don't forget the biggie. Quitting many of these meds cold turkey can kill you even if you go to the ER with instructions about NMS in your hands. I found that out the hard way.

I found out I don't have PD and I know that without PD sinemet and agonists can produce Dystonia and dyskinesia in people that are perfectly healthy. I spent the last 18 months trying to get off sinemet. The worst problem is the horrible muscle cramps that result in withdrawing the drug. You must work around that with many of these drugs. The more I read about them the more I am lead to the conclusion that quitting this drug is much like quitting heroin. It affects the dopamine system much the same way that some of the heavy narcotics do.

I also keep reading some things on the forum that are not quite right according to the manufacturer's packet included IN the bottle. With all the fine print that covers toxicity and elimination time from urine and build up in the organs. Some dry reading but it essentially says we're not sure how it works. We tested it on marmots and some other animals and we're not sure how it works it just does. Remember we don't know how aspirin works. Some of these doc should be telling people these things. That's great for a lot of people, but I think a lot of irresponsible doctors are stacking other meds that greatly affect all the hormones and neurotransmitters in the body.

Sinemet or any drug does not just metabolize into dopamine. The chemical it turns into is the closest pharma can come to replacing dopamine. The reason it needs tweaking or other drugs is that this imperfection in metabolism isn't perfect so it doesn't work perfectly. These dopa floods we cause to the brain are much like heroin. Most people spend years getting off heroin and require other drugs for treatment of the horrible bone pain etc.

Someone on this site recommended a great book to me. It's called Your Drug May Be Your Problem by Peter Breggin MD and David Cohen PhD

I tried stopping sinemet a number of ways. One thing I found out the hard way is the wracking muscle cramps. I injured my hip and knee, then most recently injured my shoulder (requiring a third surgery). I went and was sent to a number of different doctors to get me off this stuff and none of them knew how. I ended up in the ER and was offered nothing more than Valium. My biggest problem is that the docs don't take the detox from this stuff to be as hard and hurtful as it is.

Do research NMS NeuroMalignant Syndrome. It can be fatal and is the reason people don't take "drug vacations" because people were dying. It is also a side effect of these types of meds. No doc told me these drugs could kill me. Please be under a GOOD doctor's care if you try to back your mom off this stuff.

I saw a psychologist that my PD doc sent me to (and was a partner) in his multi-discipline system. She saw me twice a week for 3 years and thought I did not need psychiatric drugs. This as opposed to the dr who saw me 3-4 times a year or less. I do advise caution just from my own experience that ALL of the docs I consulted wanted to start assigning me depressed, psychotic, and other words you use to describe your mom.

I think either this has either become standard practice to treat all pwp the same way with a blinding lack of independent thought as to how not to treat or make assumptions. I still keep coming back to the fact that I never did have PD yet sinemet caused me to develop worsening symptoms and I had to battle every doc and argue that I was not depressed and preferred to treat my body differently. Do they treat cancer patients this way?? No. I've been one.

As mentioned there are many foods that are rich in things that cause us to produce natural dopamine. There are people that control their symptoms very well with many diets and supplements. This works very well for some and not for others.

If it were my mom I would look for a minimalist type-treating doc and get her off some of these meds. Give her a few months to clean out....because this some of these drugs take months to stop affecting you. Theoretically sinemet should be out of your body in 3-4 hours (that's on the bottle insert too), however, we can't stop it suddenly because we leave our bodies with no dopamine or too little.

I knew I was going too fast when I lost the ability to stand from a seated position quite suddenly. I went from taking 2700-2800 mg of sinemet per day to 200 mg and that really scared me. I also had difficulty with bladder and bowel control. Slowly I got down to a low of 400 mg of sinemet and hit a wall. I re-injured my shoulder and went back up to 700 mg per day to give my shoulder some relief.

I was really upset by the setback because the suffering to get there was mighty. I finally settled on dropping a half pill (25/100 mg sinemet) a week. This worked very well until I dropped from 4.5 to 4 pills a day. I realized this was after the holidays, I had my family in town (a great treasured rarity) so I did much more than usual. That was all it took to throw me for a loop.

I have noticed that the more I rest or stay in bed the easier it is to get off this stuff without discomfort. I also started using medical marijuana about a month ago that greatly helps. I'm lucky enough to land in a place it's legal. The relaxation of muscles with a non-lethal drug led me to that decision. NOBODY every OD'd on pot in history. My alternates included baclofen (highest possible dose) and 30+ mg of Valium per day. This is still not enough to stop the cramps entirely. I am very fortunate that I don't have to go to work and can rest when I need to.

I have read that a diet high in protein (what they tell us to avoid) is actually helpful in treating the disease alternatively. A diet with organic food and no exposure to pesticides is very helpful. Even spot on flea treatments can cause PD meds to not work if the person pets the dog and ingests, through contact, ingests those pyrethrums that are harmful. Organo-phosphates are very bad so consider contact with weed and feeds, any poisons, even if they say all natural need to be researched.

I think there is merit to eating a very healthy, protein balanced, vitamin balanced, and diet. Check out this PD recovery link. http://www.parkinsonsdisease.me/

There is another post here that was very helpful by someone that had to change brands of sinemet with success. See this post and TonyaV's response to me.
http://neurotalk.psychcentral.com/sh...gma#post783523

Unfortunately stopping quick unless there is a more pressing medical issue is dangerous. Dopamine has to have a chance to change gradually. Even for someone w/o PD these are serious drugs. I notice when I get OD symptoms that it's time for me to step down again. A lot of this could be a drug side effect. Don't let them convince you she needs all of this. You know your mom. With your patient help she can get more appropriately medicated. If she is medicated and this bad, it ain't working. Go with your gut and you have my best wishes.

Scans are not as definitive as some people think. After a career as a geophysicist (looking at scans and anomalies) and speaking to many doctors and people that take and interpret the scans. Scans are comparisons of activity they can't see PD. If that person has ever been medicated their scan is suspect. How do we separate affected (by meds) from disease? PD is definitive only on autopsy.

I was told and read this year that a person having issues with an agonist is more likely to have trouble with others. That said you could try azilect (wicked $$) or requip. I had no trouble with azilect. I firmly believe that sinemet should be a drug of last resort because it’s effective life is about 5 years. So with that understanding go out and talk to the doc. Keep changes SIMPLE so you can see what helps and what does not. Resist the urge to bump up drugs. When I bumped up to give the shoulder I NEED more now.

Hang in there, get some support for yourself. This is very stressful for caretakers too. If you need any references to above please ask....hopefully now that you are there things will improve.