Totally 100% correct Coltaine, my neoro told me that it is not the medication that becomes ineffective, it is the pd progressing.

Barbie you could just try to take the meds for a while, if it works, that confirms you have pd, and then if you want you could stop taking them, but i think you would stay on them if they work :)

Just a thought

I liked your comment Angela, totally 100% in agreeance, and l think we are all mature enough to not take offence in any opinion given, we dont all need to agree with eachother, thats normal

I am not going to respond to this new person with the scarey avatar that just came on here because she pops up in all the rooms on DS with every disease and is an expert at all of them. How sad that someone spends all their time looking for pity.

One thing is for certain though, she hit the nail on the head when she said this about herself------->"Well, I just have to wonder if hypochondria is related to untreated hypothyroidism?" or what that be from bi-polar????

Quotet is not the medication that becomes ineffective, it is the pd progressing. un/quote

This is so very true, hense is why ones meds have to be reviewed and switched up.
We were at the PD clinic this week and they have made changes to hubby's meds he starts the new med/schedule today.
He took this med ( comtam) about 10 years ago and it did nothing, they expect now is the right time for it, and have lessened his sinemet. Comtam has sinemet and an extened in it.

I'm sure I have posted this before on another thread, that years ago they did say hold off, now it is recommended to start low dose right away. Azilet has been found to slow the progression in early PD.
Each has to make their own decision and life with it.

Be nice,
Cheers Khis

khis-----WebMD included this message below. This website is very reputable and used by drs. They indicate currently the thought process in starting any of the PD medicine. http://www.webmd.com/parkinsons-disease/levodopa-medications-for-parkinsons-disease

"Treatment with levodopa (or any medicine) should be started only when symptoms start to significantly affect a person's work or daily activities."

Thought you may find this interesting.

Be nice and cheers to you too !
Barbie

So I would guess that the criteria at that website seems to be symptoms. In other words, if you have no symptoms, no need to take meds. Sounds about right to me.

Angela----I see on the PD homepage that you responded to my message but I have you on "ignore" and cannot read what you wrote so you can stop now. People have sent me messages to ignore you so that is what I will do. You must not have anything to do if you have to pick someone to attack and then follow them around on DS. I have been told I am not the first one you have done that to.

Come one everyone, this is not a bitchfifght. Angela has great words of wisdom. I choose to respect all of your opinons,

Meds work,quality of life is enhanced quickly, here in Australlia with progressive thoughts and progressive doctors, we think it is only the old fashioned doctors that do not choose to progress and try to keep meds as a last resort ,.

Sinamet is the first medication of choice here in Australia, it works, it is great, it does not lessen with effectiveness
because the drug stops working, and that is a FACT .

I would not want myself to get so bad that l could not enjoy my life now, by witholding a medication that works, that makes no sense at all,,,

Yep, let me get so bad l cannot stand it anymore, WTF

Peachy-----I am truly sorry you are struggling with the PD and hope things get better for you. I and many on DS disagree with Angela. She has been on so many DS health related rooms and always has whatever the disease is. So I take what she says with a grain of salt.

She does not know anything about thyroid problems. If she did she would know that the hyperthyroid room she went into does not treat with Synthroid, that would make the problem way worse. They treat with other medications.

It was pretty sad that someone would go into the hyperthyroid health group and make fun of the people that are suffering so bad but trying to help each other. Then say when she left that --->"I laughed so hard I nearly split a gut". How sick---but maybe that is the bi-polar thing --- I don't know.

Also, USA has some of the top medical research facilities in the world that is why many, many people fly from out of the country to the "3" Mayo Clinics to be treated for many health concerns. There is a long waiting list to get in unless you know someone, which has helped me.

What I do not understand is that people in this group keep saying that Sinemet and all the others meds help so much but yet they are complaining about being so bad off even though they are taking it?? I just don't understand that part of it and others has said that to me too --- but oh well, like you said everyone makes their choices and also everyone is different as to how meds work or do not work.

I sincerely do wish you the best .....

Forgot to add one more thing ---- everyone's pain and symptom tolerance is different also. AND---everyone starts out at some point, so obviously the people who have had PD longer are worse off than us newbies just starting out. We are still trying to understand the whole scope of it and what is going on along with what to expect. Thanks for being patient with us that are still learning .....

Sorry peachy that some people tend to take a thread and make it into something else. I apologize if I have done that.

Because I do not have PD, I have never experienced what you describe here. I am lucky in that the illnesses I have are mostly under control, although with some very strong and expensive meds.

The exception would be my right foot. I had it reconstructed two years ago because it was so badly deformed and the whole surgery went very wrong. I continue to have bad nerve pain, although I think it is getting better, slowly, it will never be normal. Of course, it was not normal before I started. I even tried to post the picture in my photos, but DS would not upload it. When they reattached the second toe, the bone was so rotten it kept dying, so it is off at a weird angle, and it is too high on the foot.

But I am not complaining, because at least I am not in that old wheel chair, these days. And I would not have come to DS if I had not been able to walk, and talk, because I lost my voice completely for months to an RA nodule on my throat, when I was off meds for my surgery.

I just want to share a lovely poem for peace that someone passed along to me. I hope it will mend some fences.

Life is too short for drama or
petty things.
So laugh hard, love truly and
forgive quickly.
Live while you are alive.
Forgive now those who made you cry.
You might not get a second time.

Peace to all.

There has been quite a lot of discussion here and some needless exchanges that were not helpful. I ignored this whole thread because I misunderstood the question in the beginning which if I could rephrase it was to the effect of, Just before waking or just after are your PD symptoms absent or significantly less and is this average/normal. My answer is yes, it's great before getting up and going and it only takes a moment now to realize oh, yes, I woke up today with PD just like I have for the last several years. With respect to taking or not taking meds:
I thought the tremor was a mild annoyance. I did try to take meds that were prescribed and after going through all the classes of meds down to and before Sinemet, I have to say the side effects for me were almost worse than the shaking. That is until I developed foot drop and dystonia. The onset of these problems was so subtle beginning with the foot drop which seemed harmless to me. I remarked to my Neurologist that I noticed on waking my feet were almost sole to sole, but that once i got up and walked I had no problem. At the time we were on the lass class of drugs before Sinemet, and focused on getting something I could tolerate ( be able to stay awake, or reverse, sleep at night, or be able to drive to the store and have some quality of normal life). I shrugged it off and thought no big deal. If this stuff doesn't work and I shake people can get over it. But when the muscle groups in my lower legs and feet and ankles, especially the effected side, became frozen in knots and hot and red and painful, I was back in to the Neurologist, and it was clearly foot-drop caused by a type of shaking you really don't feel. The leg shakes just as the arm does, but we bear weight on it and don't really feel it. So our brains are sending the same garbled movement messages to our legs that they are sending to our arms and our leg muscles start pulling off in oppositional directions no longer doing what they were designed to do effectively, and causing problems that turn our skeletal structure away from its' perfect form.
This can be delayed and possibly prevented for at least a while with effective medication. So I am with the group who urges you, TAKE THE MEDICINE. It may delay some of the stuff you don't see coming.
I had no idea this painful part of PD was out there. I always thought it was just a shaking thing,. There is a lot more to PD than shaking. We all do need to exercise to fight away at the garbled messages and send the right ones willfully to our bodies. So, for me, Sinemet works better than anything else ever has but I have to tread lightly since I get side effects that interfere with my life if I have too much "on board".

With respect to the individual who "drove through" the PD forum with numerous opinions and comments, but who does not have PD, I personally have placed that person on "ignore " because it is hard enough to look for effective answers and reasoning to apply to my own case without having to wade through all that immaterial comment. I would not dream of going to a heart attack support group and making comments if I were not a patient with a heart problem.

Yes we did get a little off track l guess, from my original question, guess it took a new spin, and a life of its own.

Anyway, i appreciated all feedback, thank you

Off the track with my original question........Barbie why do you have such an issue with Angela????? Guess in the real world people will tend to disagree,,,,,,,,, so being in a cyber world , it is much easier , being non face to face.

I like angelas opinons,,,,,,, Barbie, remember l am a soft gentle person, you seem to be a little judgmental.

Is that only me making that call?????????

peachy----I am not going to go into anything about another person. I could bring many other people on here that know what she is up to. You will have to learn on your own as have many of us. Having a positive attitude about yourself is always a good trait to have..