I thank I_Got_it_2 for his honest posts. I suggest it is up to him and his doctors as to whether he continues with his approach.

soccertese raises the issue of the thread being "potentially dangerous". As far, as I can see it I_Got_it_2 has made it clear that his posts are an account of his journey. I can't imagine any reasonable person gathering from his reports that his approach represents official advice.

soccertese can you guarantee the safety of every one of your 1700 or so posts if they got into the wrong hands?

And, for all of us:

What of a person who is encouraged to take part in clinical trials by posts to this forum, and these go wrong?

What of a person who reads a post here which encourages them to exercise, only to suffer a heart attack?

What of a person who reads posts reporting good results with agonists, who goes for these, and who several years later is confronted with terrible compulsive behaviour?

To go down the route where every post had to be safe for every person, at all times and however they understood it, would mean that every post is censored. The forum would do no harm. But it would do no good either.

As it is, I only ask that a person is honest in their posts. I_Got_it_2 is that.

John

johnt,
this thread was by a new poster advocated stopping C/L and trying an unproven cocktail of drugs which he supposedly had just started. what could be more dangerous than that? i would never post anything about an alternative therapy i tried that improved symptoms until i had tried it for 6 months, where's the value except just self-indulgence? did you consider this protocol?

let me ask you this, if the outcome had been positive, with no independent proof of anything, even if the poster has pd, would you try the protocol? i sure wouldn't.

if you want to lump my posts in with his go ahead.

Thank you for your Holiday wishes. I plan to spend my Holiday with my mother in Michigan. She has dementia and won't know who I am.

No offence was intended. I support your thread. My concern was your post of needing help, and Apathy. I was attempting to explain the danger of apathy. We teach by example to our children. Young children do not have brains developed enough to understand and process language. That is why a young child will follow dad around with his toy lawnmower. Or stand next to mom in the kitchen and pretend to roll out cookie dough. Our actions teach much more than words.

I have had PD for almost 25 years. I have followed my neurologist generally. Most people can not tell I have PD either. My older sister also has PD. There is no mistaking her symptoms. She falls constantly. She is using a wheel chair. She was a career woman and chose to devote her life to caring for patients. She has only retired a year now but is anything but idle. I have admired and wanted to be more like her from day 1.

Good luck on your journey and good luck on your choices.

Sincerely,
Vicky, Vicky, Vicky

They would have to find a doctor to prescribe them......No? Therefore no real danger here. I also take flexeril and ibuprofin. My DBS is working too well and am getting dystonia in my shoulder. Slowly turning the stimulator down, but in the meantime these meds have helped my PD as well. My doctor said no to the cogentin (sp?) but instead recommended botox.
HTH!

Vicki-
I find nothing in the literature to justify this statement. Is it possible that you misunderstood and that he was referring to acetaminophen (Tylenol) which really is deadly? -Rick

Dosage info

Ibuprofen- I took quite a bit during my RSI/TOS injury...

[The maximum amount of ibuprofen for adults is 800 milligrams per dose or 3200 mg per day (4 maximum doses).]
http://www.drugs.com/ibuprofen.html



Acetaminophen Dosage-

[1000 mg every 6 hours or 650 mg every 4 hours, with a maximum single dose of 1000 mg, a minimum dosing interval of 4 hours, and a maximum daily dose of acetaminophen of 4000 mg per day.]
http://www.drugs.com/dosage/acetaminophen.html


My dad was rotating his OTC pain meds Tylenol, Motrin etc, but it got to be too confusing, so he is now taking Aleve /or generic version so only one in am & one pm along with his other Rxs.
He has DDD & arthritis in his spine along with PD..

Please accept my apologies for the lateness of this update. I am sorry for waiting so long.

In the subsequent few months (the 1st of the year 2014) I continued to deteriorate, swapping one set of symptoms for another. And I decided that the lesser of two evils was the carbidopa-levidopa.

I went to the Neuro in Feb 2014 and at that time we decided to start back up and so began what is now my standard dosage:

Carb-Lev 10/100 or 25/100 (doesn't seem to make much difference) every 2 hours
OMEPRAZOLE 20 MG1mg 1 in the am
BENZTROPINE 1 MG TAB QUAL 1 in the am and 1 in the evening

No more Flexeril and Ibuprofin.

Sorry but I have to go. More later.

Jim

Thank you for sharing your experiences! Much appreciated!
God help us all!

In July 2014 I went to the MD and asked about my heart and high blood pressure. I was increasingly aware of it beating and after talking with friends decided I should get it checked. An EKG was done and the doc told me I might have already had a heart attack but she couldn't tell me when. She prescribed Atorvastatin 10mg tablets taken 1/day and referred me to the Cardiologist. I only took the Atorvastatin a few days and felt sufficiently uncomfortable (confused, dizzy, headache) I stopped it.

I went to the Cardiologist a few weeks later and he was surprised by the MDs comments and told me the only way to know was to do a stress-test on the treadmill with before and after sonagrams. One was scheduled and I showed up, but in pretty bad shape. I'm not sure if it was the stress, anxiety, or just a combination with an "off" period, but I was a basket case. It was all I could do to walk/run the treadmill, although the operator said I did far better than he thought I was going to do.

After the stress test I was called to come see the Cardiologist (on 9/25). She told me the test showed a possible blockage in one artery which was causing the heart muscle not to contract/expand correctly and that I needed a cardiac catheterization (where they enter the vessel to the heart and release a black dye they monitor with x-ray to see if blockage is present). I am scheduled for that now in mid-October. She also prescribed Metoprolol Tartrate 25mg 2x daily, which landed me in urgent care with side effects. Fortunately another EKG showed no heart prob so I got to return home.

There we are. How depressing it has been that no one in the scientific community seems interested in the possibilities of my experience. Given a chance to do it all over again I would have never attempted the stopping of Sinemet in the first place.

This bears repeating: