My goodness.
And you prefer this to being medicated!?

Jim,
Dilmar has a very valid point.
I'd just like to add this.
How can struggling with a progressive illness for which there is medication to help ease some of the symptoms and when that begins to become unreliable, surgery available for you would you want to live with such an appalling QOL as you are now?
You seem like a nice enough fella, always polite and respectful of others replies and I hope you aren't offended by my question.

Hi Dilmar,

No, I prefer not having the disease. But, as I have described from the beginning of this journey, my hope is that maybe I stumbled onto something that could be helpful to my life as well as those around me(including those in this site seeking answers).

If you remember, I had Parkinsons for over 20 years with little difficulty excepting the last five years which has gotten progressively more difficult, causing me to consider DBS. But the fact that I have a two-year-old daughter and a desire to see her grow up makes me wary of things with a limited shelf life. The DBS is said to have a shelf life of 3 to 5 years and I want to save that until it is absolutely necessary.

So I stumbled on this wonderful freedom for the first couple of months after quitting Sinemet cold Turkey with minimal side effects. I thought someone from this site might grab the opportunity to walk with me through the process of discontinuing or cutting back certain meds tracking the results. But it appeared there were no interested parties. And so I just tracked as best I could, with the hope that it might help others. Unfortunately, it is very difficult to ascertain rapidly whether you had a good day and that was due to changing medication or less stress or better diet or supplements-you get the idea. And when these new symptoms came on, especially some of the more serious symptoms, I had to make the decision to throw away months of trial and error for the possibility of getting rid of one or some of those symptoms. But even if I was to go back on the Sinemet there was no guarantee a reversal of the symptoms that were evident in the first few months might come back and change with those of the last few months. Forgive me for rambling...

So I decided to ride it out and stay away from the Sinemet as long as possible. Here I am today!

Jim

P.S. Apologies to anyone who might think I'm talking down to them. That was not my intention.

Jim-
I notice that you eat a lot of ibuprofen.

http://www.caring.com/articles/infla...fen-parkinsons
-Rick

Happy Holiday season to you. You have decided to stop your sinemet to discover the results. It was intended as an experiment to share with us online. You did not insist we follow every post. Just curious, When does your test reach a conclusion.

Many people on this site share your distrust of Sinemet. They turn to holistic medicines and try not to focus only on medicine to make them well. They prefer to rely on themselves to improve their quality of life. And many are very successful. Parkinson's disease is biological and holistic treatment, will improve the quality of their lives but will not stop the damage caused by this disease. If you are performing a test, it needs not only to be documented, it also must reach a conclusion. Do you regard the conclusion when the disease has progressed to the point where you are unable to take care of your daughter. Do you intend to make her suffer with you until your experiment reaches its morbid conclusion? Just curious very concerned and empathetic.

I hope you pay close attention to Everett's post. My son is a paramedic and has told me the worst way he has seen a patient die was from an suicide by taking a whole bottle of Ibuprophin.

The reason you feel no motivation is caused by the biological progress of the disease. Apathy is caused by lack of dopamine causes a loss of endorphines, the "feel good" hormone. It is the most dangerous of all the symptoms. Observe your routine as stated by you. You need help getting up in the morning. You are unable to motivate yourself, yet you drive the children to school? You spend a great deal of time in a jacuzzi with your wife and young daughter. No exercise, no observing of your diet. This is the good example you want to leave your children? the best they can expect is to not try to succeed, not help themselves, Sit in a jacuzzi all day with no thought of anyone but themselves?

Love, Vicky

i hope noone else tries this. just my opinion.

Hello made it up and thanks for the response.

First let me say I'm sorry. There is no way that I wanted to convey that my life is what you have characterized "such an appalling QOL as you are now?" I live a blessed life considering the disease I have. True that from time to time I get angry and frustrated, but usually when I shower and dress. Truth be told most people I come in contact with never realize I have a disease. Even my Neuro is impressed (I have an appointment next month).

Again, my stated purpose is to 'test the water' after stumbling on the impressive changes in my symptoms after hurting my back. then, one thing led to another and I tried to figure out what it was that was making these symptoms go away and then change when I stopped the medicine. And sharing with the people on this site is the only way to hopefully document the changes, positive and negative. But I can assure you my quality of life is right where it should be, and possibly improving (I can see the signs) and also, denigrating. It is that that I wish to discover.

Sorry again if I failed to explain it well enough in that last post.

Jim

Hi Charles (can I call you Charles?)

All kidding aside soccertease I wholeheartedly agree. The net is replete with disclaimers which warn against cutting any medications without the supervision of your Dr.

I feel like a human guinea pig sometimes (but nobody brings the little balls to play with.

Jim

Hi Vicky,

No offense taken, but to set the record straight see my responses in bold below:
Merry Christmas and Happy New Year!

Jim

i hope any further guinea pig activity you partake upon yourself you wait until the results are in before you post them and summarize in 1 post.
i also suggest you terminate this potentially dangerous thread so noone else will try your "experiment". just the title of this thread is imho potentially dangerous, desperate people do desperate things without consulting their dr and even hough you cautioned people about this it can be ignored. by creating such a long thread and with the negative conclusion at the far end of this thread, you've created the dangerous possibility that someone will attempt copy what you did because they didn't read the whole thread to it's negative/ambiguous conclusion. and we'll possibly never know about it since most people who read this board never post.