It is very important to take the Sinemet (Carbidopa Levadopa-- spelling? ON TIME. SO yes I would see how much improvement you can get w/o. I have the patch as well. Rotigotine and very little in the way of side effects.

I DELAYED SINEMET as long as I could in order to attend HS and college graduations and God willing, in the Spring son graduates Law School. A PROUD and sacred time for us has been proof reading his papers in school and spending many hours improving and polishing the structure and flow,. It is something I will long remember as a really great bond. I write very relaxed here and make errors. He did all the rewrites, I just kept showing him what needed to be done over,.

My point is, I had to struggle through years with just Amantadine in order to be there for these times because the Sinemet only helps for a limited time and then we're up the proverbial CREEK pronounced CRICK,.

xoxo WWW

Hey forget the 5 hours trip for now unless it really worth the trip. You have a doc with really good reasoning it sounds like,. MOST would just give you the script for the one drug they KNOW will help you. I was on Sinemet for hmmm 5? years before it suddenly became necessary to use the patch and I got just a small improvement for a 700.00 a month drug not covered by insurance......don't hang him yet, he's showing signs of being savvy. ALL JUST MY OPINION

I was wondering if you can't remember to take the Sinemet is there someone around that could remind you, or maybe you could get a watch with alarms in it to remind you when to take it.

The watch would be worth looking into. I think I've seen people use them, so they must be available, but I don't know where.

use the alarm function on your smart phone to remind you take meds on time. same time every day. Keep a log of on time off times in relation to taking your meds consistently. easier said than done. The key is to try to keep a level dose in your system so you can avoid highs and lows.

readerleeder, if your neurologist is well-informed about PD and PD meds, you have good communication between the two of you, and he/she has compassion for what you're going through as well and works with you as he seems to be doing, that's what counts. My mother goes to a neurologist, and he's great.

Hello readerleeder and welcome!

You have found a great support group. You will always find support, understanding, new information, and a multitude of opinions and perspectives on PD, treatments, doctors, research and many other things here.

I just recently lost my doctor (movement specialist) as she returned to the west coast. She was the only one in the state. Apparently there are not many doctors focusing on movement disorders as a specialty.

From interaction on this site, I have found that PD is a very personal disease. No two people experience PD the same way or react to drugs in the same way. Give your neuro a chance until you have reason to think otherwise. You can always get feedback on any question you have by visiting this site.

Wish you the best....

Hey there readerleeder: Just popping in to see how things are working out with you and your Neurologist. I know that you stated that you were not unhappy with him but you were looking for other options that might be available. Did you find any other feasible options or are you going to stick it out with your neurologist? I'm just curious because I'm kinda feeling the same way. I don't much care for my neurologist's bedside manner but he does come highly recommended. I just can't seem to get him to listen to my symptoms when I try to explain them to him. He has written in my chart that I have had tremors in the past and he keeps asking me if I am having any problems with tremors coming back - I keep telling him I never had tremors to begin with.

I've checked into possibly seeing a Movement Disorder Specialist but the closet one is just a little too far for me drive. I've heard and read a lot of good things about using a MDS instead of a neurologist. So was wondering if you were able to locate an MDS close to you and if you were going to start seeing them.

My neurologist is kind of arrogant and definitely doesn't like to hear that I have done any research online for possible other medications that might help with some of my symptoms so I just continue on the medication path he has me on. He does make adjustments to the dosage but it's still not providing any reduction in my symptoms.

Keep me posted on how the adjustments to your medications are working for you.

Readerleder, The issue of when to start sinamet or the generic carbolevodopa is a really good question. The conservative thinking is that it has a limited efficacy. In general you need to keep having the dose increases in order to get the same control of symptons. It is like saving it for when you are older was more important to me then so I could continue to work. Without sinamet I would have shaken out of my ability to work.. Now 8 years on sinamet my tremors and dyscaniseas have advanced but I am still able to work. There are no guarantees in life. So for me holding off on starting was not worth it. I have recently 2 weeks ago started on the newest approved med called rytary. It is a new formulation of synamet in capsule form with pellets that disove at different rates. The concept being to keep a level dosing in my system. Again taking meds on time with pd is critical to effectiveness. Hope this helps Alex

fReader, I take Nuepro patch, Azilect and sinement. I was diagnosed at 61 and that was 5 years ago. The Nuero Patch had just been taken off the market in the US because of the glue they used irritated the skin and about 2 years ago it was put back in the marketplace. The patch is the easiest to use (although I had a hard time getting use to it ) but I still forget to put it on and off. I've found a total of 5 patches on me at one time. The Azilect is great too - one pill a day. The idea is to take as little medicine (mg at one time) as you can get by with for as long as possible. So if the meds you take now allow you to have the quality of life that you feel you should be having then the meds are ok. If you are still in pain and fearful of falling, anxious and/or depressed, etc. then it is good to have the sinement to turn to. If you forget to take the sinement and your symptoms do not remind you that you have forgotten then maybe you don't need that much. I know there was a woman on this site that takes just 1/2 sinement pill a day with the Azilect and that is all she needs. We are lucky to have a disease where we can play around with the medicine and if we are into the natural remedies that as well - it won't kill us and it won't make the disease worse. There are studies though that prove that PWP who take the sinement live longer than those who do not. The sinement relives the wear and tear on the body.

Another thing is exercise - it has proven that this is the one thing besides taking the meds that helps us. I have found in my own life that exercise has helped me physically, mentally and spiritually to live with this disease. Tai Chi is excellent for PD. I've been to a couple of seminars that stressed Tai Chi. This diseases symptoms because it is in the brain affects us mentally, spiritually and physically - our whole being. Exercise is the same way.

Also the sinement and Azilect should be taken at least one hour apart if not even more because it counteracts or something like that if you take them together. I took mine together for a couple of years before I was told that so now I take them apart.

On the NPF site they have a great sweetheart of a pharmacist who answers questions. He has PD as well - so he knows what he is talking about. At the NPF site you have to set up an ID and password and then go into forums. The dr. and nutritionist as well and all of them are very knowledgeable about our disease. Good luck.

Oh, I forgot to say. I'm meeting with a new Neuro next week and I think I need a med adjustment but we will see what he has to say. If I do not like him I will just stick with my present neuro - it is her secretary I have trouble with. What gets me is that somedays I'm fine and other days I'm really sick - it feels like my whole body has a headache (not throbing). But not every day is like that. My therapist told me to keep a journal. Yikes - the thought of having to keep a journal seems scarier than my pd symptoms.

debfromnj-
You're too funny. The part about writing in a journal is scarier than your PD symptoms cracked me up. Journal writing can be fun once you get into it. It will help your therapist track possible trigger points. I guess you have to enjoy writing though to like the thought of keeping a daily journal.

Good luck next week with your visit with a new Neurologist. And you're right - if you don't like him then just keep the one you have and try to just ignore his secretary if at all possible.

You won't believe this!!! I go to a physical therapist who specializes in PD and other movement disorders. I was complaining about my being sick a lot and he changed my medicine schedule!!!!!! I know that it is ok to change my schedule as long as I do not change how many I take. I take 5 and 1/2 sinement a day every 4 hours. He told me to start taking it every 3-1/2 hours. I will try anything!!! I have learned so much about my disease from this guy. He knows exactly how I feel with the dystonia and bradykinesia. The therapy group is with the Hosp. for special surgery and he has a doctor in Physical Therapy. Whatever that is. I was just shocked when he did it. I only thought of taking more which is not the right thing to do unless I talk to my dr. So we will see. I go to the new dr. Tuesday.