[lurkingforacure]

I'm posting this as a separate thread because it seems like lately there have been several posts concerning docs not doing this or that because it's not standard operating procedure, blah, blah, blah. I'm with everyone and we also have had our neuro flat out refuse MANY of our requests, we have even been laughed at, and thereafter learned to preface our request with "we know this probably was not covered in medical school, but...."

Here is my info. We currently consult over the phone with a doctor in another state who prescribes our LDN. We have never met him, but he has our entire medical history and we have lengthy conversations about various options. We will fax him oftentimes voluminous studies and papers which he will read and then we will discuss.

During one of our conversations, we happened to ask him what all he could and could not do, because obviously there is a line. My understanding of his response was that as long as you and your doctor are working toward a treatment goal, he can pretty much do anything he wants to as long as it is in furtherance of that goal. It has to be legal, of course, so no illicit drugs or things like that, but in my mind, I was like, wow, what a LOT of leeway that gives the doctor!

We have discussed methylene blue (we could not get the dose figured out so gave up on it, but he was willing to at least discuss it with us), LDN, dynacirc (which we currently take), and I can't remember what all else. My point is that I think most docs CAN discuss and even go with you down that alternative option journey, but don't want to because (1) it would mean they would have to educate themselves and unfortunately, well, that doesn't seem to go over too well (there being exceptions, of course, hope your doc is one of them!) and (2) fear of liability from being sued by you or your family if something goes wrong and/or (3) fear of being kicked off the insurance/medicare gravy-train. I mean, there's just no medicare or insurance billing code for some of the stuff we talk about on this forum! The doc wouldnt' even know how to charge for it, which to many docs, is the most important part of being a doc!

It is hard to find a doc like this who isn't selling tons of supplements in their office and rather pushy about them, we have seen one of those too. He got us on the IV glutathione program for awhile until we bailed, it was horribly expensive and we got no benefit (others have, I know, and good for them, it just didn't work for us). But I know they are out there, and I hope you can find one.

[Conductor71]

First, I just want to send you a tremendous "thank you" for starting this thread. I have toyed with it but don't have anything to offer other anecdotes and some anger.

Let's see...where to begin...oh, yes, last summer, an esteemed bioethicist is invited to join our discussion and essentially tells us to suck it up and deal with the sham surgeries- we have a moral obligation participate in research for those who get PD in the future. Great, I get this in theory. May I ask where then is a doctor's or a researcher's moral imperative to alleviate suffering in the here and now for PD patients?

Why is it that the clinical trial is so vastly different for Cancer patients when not all cancer are terminal? They are not, on ethical grounds, subjected to taking Placebo- no, instead, it is recognized that they all have the right to potentially benefit from a new treatment. Even more interesting is that the riskiest of treatments and procedures in clinical trial are reserved for those patients who are not terminal! There are some murky ethical things here too but I just wanted to share that not all specialties are so conservative in their clinical design approach.

Finally, I have never had a doctor outright laugh...all have accepted my eccentric white rat questions. At this point, I accept they don't want to take on added responsibility and liability, but I am so disgusted by all this. I find it extremely sad that doctors risked life and limb not too long ago in support of a woman's right to choose- yet, I can't even find a neurologist to help me figure out how to lowball Dextromethorphan; you'd think I was asking for a brain transplant or something. I think it goes back to the "they have Sinemet" mindset, but we are out here suffering, nonetheless, it's no wonder they do not want to solicit our input or work more as partners; this may cause them to actually look inward and see how far they need to go to measure up as human beings.

Well the Hippocratic Oath takes on a whole new dimension for me...first do no harm. Well, I guess no one had them ever explore that in taking no action to work with us off label, they indeed may be doing even more harm. Where are our brilliant, compassionate clinicians who are willing to do what is right? Or does't that concept even exist anymore?

Laura

[Fiona]

Thanks for telling us that there are some different docs out there, LFAC. It is interesting to note that different responses are possible.

Laura, I HAVE had a neurologist burst out laughing at me when I brought up a protocol for supplements that I wanted to try (literally - and then joking about my idea in front of my face to an intern who was in the room). I burst into tears, and told her, "You know, if you were in my position, you might be considering the same thing." This was one of our very tip-toppy, most famous neurologists. She is, I think, in her own way a compassionate person and doctor. BUT she is really locked into a defensive mentality in many other ways. I recently had an exchange with her after some years of not seeing her about the idea of once again reconsidering my original diagnosis. She said, well, that could actually be an interesting thing to do at this point - but then quickly added that the only other thing it could possibly be was dopa-responsive dystonia. My question is, given that we don't even know what causes PD for sure, I've never had a definitive diagnostic test 'proving' PD, that the definitions and symptomatic parameters of this disease/condition/syndrome/constellation of symptoms seems to be ever expanding or changing - then how could she make such a definitive, narrow statement like that - unless out of pure defensiveness?

And then there's the issue of the other famous, tip-toppy neuro who has that quiet little mucuna patent application that in itself contains a wealth of damning evidence about the neurotoxicity of levodopa therapy, the far superior qualities of mucuna pruriens (which is easiy available from, uh, Vitamin Shoppe) - and has he ever made that information public to his or any other patients? That's when I knew that not all of them really have our best interests foremost in their minds - although there could be some elaborate mental process of rationalization that allows them to still serve their patients well in some areas, or a bedside manner that can be positive and encouraging...

Doctors, like anyone, are not all black and white - but yeah, why wouldn't they be more interested in things that could possibly help? They could say, "well, this has not been proven by any clinical study, so I can't recommend it based on that kind of evidence, but anecdotally dextromethorphan has helped people. If you want to go that route, let's give it a try as long as you understand that I'm not guaranteeing the results..." - which they can't for anything like Azilect or whatever anyway...

[paula_w]

I like my neurologist most of the time but can sense that he thinks I am- without the DBS he finally has stopped trying to talk me into - a few wires short of a full curcuit.

I began with this neuro under great stress and wired on sinemet, once wearing bands wrapped around my legs, arms and head - yes head

He kept a straight face.

Then there is the email I sent him during the aricept crisis where i confessed that I thought marajuabba worked. so I've tried to be calmer and see his whatever you call the assistant ; we get along even tho she almost killed me with aricept -- when it wasn' t common knowedge that neurotransmitters are not the same in pd and alzheimers.

I told her that was my theory anyway. I have freedom to pick and choose what med to try and am considered to be someone who does her homework. It's very relaxed and i'm starting to see the humor in this assistant. SHe might turn out to get my mumbled dry humor.

paula
did i answer the question?

[vlhperry]

We, as patients are living in the moment with our illness. Those who have just been diagnosed are still in shock, those who have been recently diagnosed may be in denial, some may be in a bargaining stage (if I just eat right, exercise, doctor prescibes right drugs, the illness will go into remission), and those of us who have lived with it 20 + years may have reached the point of living with PD and not for PD (acceptance.) Some are fighters and fight to the last breath.

Doctors who treat patients with PD, have treated all stages of the disease patients experience. They know where the new patients are going to end and how the older patients disease began. They see the large picture through their experience of treating patients. They know the outcome of the disease, regardless of how the patient is treated. They are also seeing more and more patients as more neurologists retire, and less residents and interns refuse to fill the numbers because of the decrease in income and the cost of education for a neurology speciality.

If patients want to be heard, they must be well prepared for each and every visit with their specialist. If they do not want to be just anouther patient the specialist can classify in a neat category with past patients they have seen in the same stage of the illness, The patient must make an effort to use the time in a non-combative way to catch the specialist off gaurd to be seen as an individual patient and not just a category.

Mr. Fox's new book addresses how to live life with PD very positively. Check it out.

Vicky

[rose of his heart]

Originally Posted by Conductor71

Let's see...where to begin...oh, yes, last summer, an esteemed bioethicist is invited to join our discussion and essentially tells us to suck it up and deal with the sham surgeries- we have a moral obligation participate in research for those who get PD in the future. Great, I get this in theory. May I ask where then is a doctor's or a researcher's moral imperative to alleviate suffering in the here and now for PD patients?

That is not how I read Owen Schaefer's article, posts and emails AT ALL. To contend that we have a moral obligation (though not legal) to participate in research (with appropriate exceptions) does NOT mean that we are expected to participate in every single study out there, nor does it address sham surgery study design and the unbelievable decisions made during that process. I am in the process of updating our moral obligation thread, which has had 1,673 visits, and look forward to everyone's responses.

More later....I just had to correct the record on this after Owen gave us and me so much of his time and expertise.

[Fiona]

Vicky,
thanks for your post. I feel I need to respond to your statement that physicians that treat patients with PD know where they're going to end up. I'm sorry, but nobody knows where anyone is going to end up. Doctors are not seers, and many times have been proven wrong. Since you mentioned Mr. Fox, I just wanted to say that at the time of the incident I described about my neuro laughing at me for wanting to pursue a protocol of supplements I presented, Mr. Fox and I were her two youngest patients. So she didn't have a lifetime of experience of "knowing" where people diagnosed at 32 were going to wind up. She still doesn't - nobody does, because people of Mr. Fox's age and mine are not done yet, so how could anybody know?

I say this because I think it's important not to give over predictions about our futures to anybody. Including other PD patients, including you. There are many, many variables, and nobody knows the course of the current medication treatments could have over many years. And plus - I'm surprised that this seems to be a new idea, but every person is different.

Also I think it's a lamentable thing that the burden is on the patient to get individual attention from the specialist. It may be true, but it's not right. There are plenty of smart people on this board who have made coherently researched presentations to their doctors who have not been granted "a full hearing." And that should be changed if medicine cares at all about chronic disease patients...

[vlhperry]

The doctors are aware of the insidious factors of living with Parkinson's. You may not be satisfied with your neurologist, I am truly sorry. I can not speak for Mr. Fox, I was only adding, as an afterthought, to my post that I enjoyed his book very much.

Our treating neurologist cannot predict the cause of our deaths. But one thing is truth: Not one of us will be alive forever. I certainly agree with you that no one will know the cause of their death. If we do not suffer from a fatal accident, It is logical to assume that having Parkinson's will play a major factor in the cause of our death. No matter what age our symptoms appeared.

Sarcasm noted where you stated that we are all different. How we deal with the illness and our actions show that. I choose to not blame my physician and trust him as long as his suggestions are resonable and support the knowledge I have gained while living with this illness. I may seem to be a Monty Python character to you, comically singing with his troupe about trying to see the good side of life, but I cannot try to control the symptoms any more than my neurologist can, so I choose to look for the good side of life. Despite your opening remark. thanking me for my post, then stating your opinion arguing against my observations, I have no problem being perceived as a buffoon for having a positive outlook. I find it much less stressful to not try to change what cannot be changed, change what I can and having a sense of humor to see the difference.

[Fiona]

Sorry, Vicky, I got a little crabby and testy, and I admit it, sarcastic. I actually adore Monty Python, and no, you don't seem like a buffoon. And even though I complain about doctors, it's my way of constructing the positive world that I need for my self, my life, and my body...I am just becoming more and more aware of how lumped together people are with the label of this diagnosis, and how inappropriate I think that is.

Some people do best making peace with their doctors and trusting the treatment they are given (provided they have no complaints about past treatment, I suppose.) Others of us do better saying, "no, you can't define my life with your dire prognosis..." They say that clinically speaking, argumentative patients often do better - I don't know about that, and I wouldn't presume to urge people in that direction if it wasn't comfortable for them. I am reminded of a book I read recently that cited one woman who got a six months to live prediction for her breast cancer, and promptly said to the doctor, "screw you," and lived happily for many, many years. This same book said that "studies have shown" that women with metastic breast cancer who see themselves as fighters, not going along with the status quo on treatment, etc. tend to live longer than women who peacefully accept it. Again, I have no idea if that is true. But we are all doing the best we can in our own way. I think I felt judged by what you said, and perhaps you didn't intend it that way. I apologize. And I do genuinely thank you for your own experience of how to do well in this situation. But I have heard so many stories from people who have been traumatized by their medical treatment of PD, that I don't think I am alone in my suspicions and reservations that treatment is not always optimal for many.