I would get a second opinion, and in the meantime let her settle at the dose she is currently on. It takes time.

Sleeping problems are quite usual with PD and with taking sinemet.

I am not a medical advisor, I cannot advise on medication, neither can anyone else, they can only tell you what their experience is.

My opinion is too much chopping and changing won't help. We have fragile brains, and every time you make a change the brain has to adjust to another set of factors, another imbalance between the fine tightrope our neurotransmitters give us so we can have something like 'normal' living.

The book does describe things that happen to all of us when we make medication changes. As patients we struggle with them, like your mom is doing. We go home with the instructions and try to make sense of what happens to us, and we share experiences, and often they are helpful and informative, and get us by till we see our doctors again.

The theory of the book is scary, and while some have claimed that it works for them, I have yet to meet anyone who has followed this protocol and got off sinemet. I am not claiming that it does not happen, but given that we come across a lot of other PwP, and people who have been re-diagnosed, it is odd not to encounter anyone in the real world who has done this.

You sound like you are determined to take her off sinemet. You have asked a lot of questions, these really need to go to an MDS, not anyone else.

I am sorry I posted now. I did so because you sound so distressed by her condition, and I gave the best advice I can.

Because you want to do this. To reduce her meds.
But I cannot validate your decision to do so.

It could be something else other than PD. No one here can tell you whether it is or it is not. You say she is not doing well, and clearly you are very concerned for her.

The only thing I can add is that if she is still having pains in her arms, and if you have not already done so, you should have her GP check her for angina.

In fact get her to have a good general checkup too if she has not had one recently, because not everything is PD-related.

Let me be clear. I have no dog in this race, i.e. I don't know what we are going to do about her long term use or non-use of Sinemet. I am responding to my mother's reaction to increased dosage and later reduction of Sinemet. She's on lots of other meds that I have no reason to be suspicious of. In fact its the neuro who was suggesting taking her off Sinemet entirely, "to see what the effect would be", presumably so we could learn more about her condition. I lobbied to slow down this process and try some months at her current dosage. But I was concerned this may not be good if my mother "starts to recover", as the book states.

She has had general checkups. Her doctor doesn't really like to comment on these matters, and defers to the neuro. He just said that all his PD patients on these meds are sleepy all the time and have trouble maintaining their weight. Which describes my mother in the past few months.

At this point I'm not sure what the best scenario may be, which is why I was looking for help with people and practioners who have pursued reduction of Sinemet.

Hey there,

It is more than okay. Your mom really needs you, and we all here know it is beyond frustrating when doctors don't seem to hear what you are saying. In their defense, they are just doing what they are trained to do, which is to develop a repertoire of common treatment approaches and rotely apply them in a generic way.

After reading your last post on the PA and neuro seeming clueless about weaning off Sinemet too suddenly, frankly, I would second guess any medicine directive she gave. Please make sure you consult with another doctor. I am not sure if someone mentioned Neuroleptic Malignant Syndrome which can occur if drugs are stopped too abruptly and it can be life threatening. ER docs especially do no this.

As for the recovery guide, I think you are spot on. She must stop taking this very slowly like over the course of weeks or months. I have experience with stopping 2 pd meds over 7 days (I found out I was pregnant.) First I had generic but uncomfortable withdrawal symptoms then I went on a steady decline where I was like your mom and the bed covers. I would go totally akinetic at night and slept in bed like a turtle; it was terrifying because I just could not move from the neck down. I didn't remain like this but came to a point where I wondered if I could have my child without ending severely disabled. My (former) neuro could not explain my reaction other than as symptom rebound from meds.

Hmmm...I think that some of us (sounds like your mom too) are super sensitive to PD drugss. Based on what I learned from my experience is that PD recovery has it right on how to properly stop levodopa. More recently I dropped down 4 mg of an adjunct med over the course of two months it was done by basically following my doc's schedule but more based on how I felt. Say he called for me to drop 1/2 dose of one med over the course of 3 days if I ended up with any brain fog or other unpleasant withdrawal, I stopped dosing down right there. I give it three days minimum or longer at that level until I feel "normal" and then try to start reducing again. I have consulted with two docs who say this is sound.

You are on the right track, but don't do this without some sort of green light from a doctor or pharmacist. The doctor you have now will likely scoff at any alternative to the generic titration guides doled out to every PD patient. Speaking of...there is a pharmacist forum at the National Parkinson Foundation website. Mark is a great guy with lots of experience in all this as he himself has PD. http://forum.parkinson.org/index.php...he-pharmacist/

As for that sensitive period the book describes where we are to lower levodopa as our endogenous supply starts to kick in...I am not sure of how else to do that beyond what I have tried, but it sounds like reducing, plateau, comfort or homeostasis, then trying reduction again falls in line with what they are saying???

Hope this helps,

Laura

Oh, wanted to respond to your thought on trying your mom on a lesser dose for awhile. That is kind of built into it at the plateau phase. You would stop decreasing meds just at the threshold where she becomes too uncomfortable or too symptomatic. At that point where she levels out you could assess and see how she does and then you can note differences for a doctor.

I went from an 8 mg reduction in my agonist with no ill effect and was shocked to see that I actually felt better on less of it and some "symptoms" disappeared altogether. Worst part is I was not even aware I was over medicated until my GP told me she thought I had drug induced Bi-Polar Disorder.

Update us!

Laura,

Thanks so much for your kind post. What you describe as being "akinetic" and a brain fog sound very much like what my mom is experiencing right now. I wish the neuro had suggested reducing more slowly, knowing now what I know, but no going back now. It's been about 5 weeks since the first reduction and about 2 weeks since the last reduction, so I think we're still in early stages. She's seems a little more stable now than last week, just real, real weak and slow physically. Her mind though seems pretty sharp externally at times though she says she is in a fog. I have some more feelers out to various practitioners, will see what happens.

Just an update. We have an appointment tomorrow with Dr. Melissa Nirenberg in NYC/NYU - who has done peer reviewed studies (part funded by the PDF) specifically on PD drug induced addiction.

My mother has been doing better and better the past few weeks, though she does not say so. All her friends are commenting how much stronger and sharper she is. She still seems to have good and bad days. We shall see...

And another quick update. Dr. Nirenberg was very nice and her team did a good job I think in examining my mother's condition. Her thinking is my mother has Lewy Body disease. Still looking into this, but it seems to be the same thing as Lewy Body Dementia. It seems like the relationship to Parkinson's is sort of unclear, from a scientific perspective, though they do share many characteristics.

Glad to hear your mom is generally feeling better. Sounds like you are on the right track with a good neurologist too. I generally it sucks to hear any sort of neurodegenerative diagnosis, at least the doctors can get her the right treatment.