Notice for medicated patients
The Parkinson’s Recovery Project’s does not provide support or training for people who have ever used dopamine-enhancind antiparkinson’s drugs for more than three weeks. The Parkinson’s Recovery Project’s research arm, the PD Team of Santa Cruz, will not accept into its treatment program people who have ever used dopamine-enhancing antiparkison’s drugs for more than three weeks.
We no longer recommend a recovery program for any person who has ever used dopamine-enhancing antiparkinson’s drugs for more than three weeks. Even if such a person has stopped taking the medications, he is not a good candidate for our recovery program. This announcement, being added to our website and amended to our writing about Parkinson’s medications, is an update in our ongoing research with Parkinson’s disease.
History of our drug findings
By the year 2002, we had realized that no person who was currently using dopamine-enhancing antiparkinson’s medications should enter into a recovery program. Beginning in 2002, we no longer accepted medicated patients into our program. To explain our position, many case studies were included in a book, Medications of Parkinson’s, or Once Upon A Pill: Patient experiences with dopamine enhancing drugs and supplements. This book, released in late 2003, is available for free at our website. The case studies in this book detail the disastrous results that occurred when medicated patients began to recover.
By the fall of 2004, we were beginning to recognize a different problem: drug-induced parkinsonism in people who had ever taken any antiparkinson’s medications, even in small amounts – even if they were no longer taking those medications. Those people with Parkinson’s who had ever taken any antiparkinson’s medication for longer than three weeks ultimately did not follow the same recovery path as people who had never taken dopamine-enhancing drugs – even if they stopped taking the drugs prior to entering the program.
The difficulties of these people were not nearly as dramatic or as deadly as the problems encountered by people who recovered while still taking medication. However, these people have not, in our experience, been able to permanently recover from their symptoms of tremor and difficulty initiating movement, even if, through the treatments we recommend, they temporarily recover from body-wide symptoms and permanently recover from all of their localized Parkinson’s symptoms. (For a description of localized, Stomach channel symptoms, as opposed to body-wide symptoms, please see chapter 10 in Recovery from Parkinson’s Disease, available for free download at www.pdrecovery.org.)
It now is becoming apparent that people who have ever taken dopamine-enhancing drugs evidently have semi-permanent brain damage that corresponds to the adverse-effects warnings provided for these drugs by the drug manufacturers: tardive tremors, tardive dyskinesias, tardive body-wide slowed movement, tardive body-wide difficulty in initiating motor function – all symptoms of drug-induced parkinsonism.
Our program very effectively treats idiopathic Parkinson’s disease, a disorder in which brain cells fail to produce or release dopamine, and in which dopamine-producing brain cells revert to a dormant (non-dopamine producing) format. We have no effective treatment for the drug-induced cell death that causes parkinsonism, a disorder that outwardly resembles some of the symptoms of idiopathic Parkinson’s disease.
People who have used dopamine-enhancing drugs for more than three weeks have the following problem if they enter our program: in the beginning, they undergo some distinct, pleasant or sometimes unpleasant symptoms of recovery, and many of their Parkinson’s symptoms disappear. This is consistent with recovery from Parkinson’s. However, at some point in the process, they find that, once their adrenaline is turned off, they are unable to focus their minds on either movement initiation or the mental processes required for full recovery. Their behaviors suggest that the brain centers that regulate mental focus and will power from the parasympathetic (dopamine-dominant) mode, as opposed to regulation via the sympathetic (adrenaline) mode that has been in use during much of the lifetime of the person with Parkinson’s, have been damaged by the drugs. Therefore, even after many Parkinson’s symptoms are gone, the people who did use antiparkinson’s drugs, even for a short while, find themselves, within a few months or a few years, in a new type of very unsatisfactory condition. To ameliorate this problem, they or their loved ones often hope that the medication, at very low dose, might solve the remaining difficulties.
However, because during recovery, even partial recovery, their bodies have switched from a state of pure adrenaline dependency to a healthier state of dopamine reliance, drugs that were previously appropriate or even seemed to “do nothing” become highly dangerous. Those people who have tried to resume even small amounts of medication to address the lingering, somewhat milder problems of drug-induced parkinsonism have had horrible problems: death, insanity, and, in two cases, violent thrashing that requires the drug user to be permanently strapped to a bed. This issue, the problem of using antiparkinson’s drugs after the adrenaline system has been turned off and recovery has started, was addressed in the medications book. What was not addressed in the first edition of that book was the problem of drug-induced parkinsonism in people who stopped taking the medication or used the medication only briefly (more than three weeks). We have learned that this problem is a significant one.
Questions that arise
Some issues that were not addressed in that book are these: what happens if these partially-recovered people, whose recovery is stalled because of brain damage from drugs, refuse to take any antiparkinson’s medications? What will their condition be like if, after their idiopathic symptoms are gone, they just “suffer” along with those symptoms that have come about from drug use? Will they be better off than if they’d never been in the program? Is a person better off staying on the medication or getting off the drugs, recovering, and then dealing with the milder symptoms of drug-induced parkinsonism?
These are very good questions. Because every case in our experience has been unique, we cannot answer these questions with specifics. A medical statistician who visited our program with the hope of creating a model for prediction left us saying “Each person’s situation is so different. Until you have treated at least a thousand patients, it will be impossible to generate any meaningful data.”
Also, it is important for the reader to understand that the motor, mental, and emotional problems of drug-induced parkinsonism are not static. A person with these problems will continue to decline over time. Many of the parkinson-like symptoms that can be caused by dopamine-enhancing drugs are tardive. (“Tardive” means that the adverse effects set in motion by these drugs may not appear immediately.) The list of dopamine-enhancing drugs includes antianxiety and antidepressant drugs (SSRIs and tricyclics), most anti- ADD/ADHD drugs, as well as antiparkinson’s drugs. Tardive adverse effects from these drugs may not appear until years after a person has stopped taking the drugs. It appears as if the brain changes set in motion by these drugs continue to build upon themselves; as a consequence of drug use (of dopamine-enhancing drugs), the brain moves inexorably, relentlessly, towards parkinsonism even after the drugs have been stopped. That march towards ever-increasing immobility and ever-increasing tremor may very likely continue for the rest of one’s life. The drug warnings for nearly all dopamine-enhancing drugs note the risk of developing tardive tremors, tardive dyskinesias, tardive slowness of movement and the other tardive symptoms that constitute drug-induced parkinsonism.
The earliest research on this subject, written up by Oliver Sacks in his book Awakenings, shared the unexpected results of administering, for just a “short” period of several months, dopamine-enhancing drugs to people with sleeping sickness, people whose physical immobility had not changed significantly in decades. After it was determined that the drugs were causing these people more harm than good, the drugs were stopped. The truly unexpected part of the experiment was the after-effects: those people who had used the powerful dopamine-enhancing drugs for a relatively short time were no longer in a static condition of immobility. Their post-drug condition, for most of them, was much worse than their pre-drug condition. Also, their condition continued worsening, even after all the withdrawal effects from the drugs were finished. In other words, short-term use of dopamine-enhancing drugs had set in motion a new brain pattern than caused dynamic, steady worsening of their condition even after the drugs were no longer in use. This is a pattern that we are beginning to recognize in people who used antiparkinson’s medications, stopped using them, and got into our recovery program.
A person who has ever used dopamine-enhancing antiparkinson’s drugs may well have created a drug-induced condition in his brain that will, at some point, render him depressed, immobile, and tremoring. If he has recovered, meanwhile, from idiopathic Parkinson’s, he will not be able to use antiparkinson’s medications to treat these symptoms of drug-induced parkinsonism. I repeat: it will not be safe for him to use antiparkinson’s medications ever again, if his idiopathic Parkinson’s is gone. As our book on medication demonstrates through hellish case studies, a person with the above symptoms who no longer has the adrenaline-dominance of idiopathic Parkinson’s cannot tolerate the antiparkinson’s medications at any level.
Therefore, our policy is now:
We do not recommend our treatment program for people who have ever used any dopamine-enhancing antiparkinson’s medications for longer than three weeks.
Proceeding with caution
We have been cautious about jumping the gun with this gloomy recommendation, However, our ongoing research has slowly convinced us this is the correct stance to take. In fall of 2004, we started sharing the above recommendation with new PD correspondents who wrote to us about their plans to stop taking medication so that they could start being treated for idiopathic Parkinson’s. We were still hoping that possibly our findings were wrong, but we were seeing a definite negative trend in those previously medicated patients who had quit the medication and thought they were on the road to recovery, only to find themselves stymied. Those who tried to revert back to medication could no longer tolerate the medication.
By early 2005, we were more certain than ever that the problematic symptoms we were seeing in previously medicated patients who had gotten off their medication prior to starting the recovery program were not coincidence. We decided that we should no longer offer hope for recovery to those who had ever used antiparkinson’s medications for more than a few weeks. We decided that we could no longer, in good conscience, provide recovery-oriented treatments for these people.
We started communicating this new recommendation by emailing long, detailed warnings about our change in policy to any new drug-taking correspondents who contacted us to say that they hoped to seek treatment as soon as they were drug-free. We found that they, almost universally, disregarded our warnings and started reducing their drugs in anticipation of starting a treatment program. When they wrote to us again, saying that they were completely off their drugs and now wanted advice or support because of unexpected difficulties, or because they wanted to come to Santa Cruz for treatment, we repeated our statement that we could not support a recovery program for people who had ever taken antiparkinson’s medications for more than three weeks: we would not treat them. They were often shocked, or even outraged by our regretful but increasingly adamant adherence to our new position about the unsuitability of trying to recover after having ever used antiparkinson’s drugs.
A very common response has been, “But I assumed that your statement about not recommending this program for people who ever had taken the drugs for more than three weeks must have just been a legally protective stance. Surely you did not actually mean what you said!”
Now, in late 2005, our finding that people who have ever taken antiparkinson’s drugs for more than three weeks are not good candidates for recovery is being posted on our website and appended to the medication book using firm, unambiguous language and an illustrative case study.
Responses to our new findings
As soon as the PD Team of Santa Cruz (www.pdtreatment.com) started enforcing our new position, refusing to advise or provide therapeutic treatments for new inquirers who have ever taken antiparkinson’s drugs for more than three weeks, we began receiving emails, ranging from pleading to furious, telling us that we must change our “drug policy.” The typical email says, “My father’s medications no longer work / have horrible side effects; his condition is destroying the quality of my mother’s life. Your program is our only hope. Therefore, please tell us that my father can recover, at least partially, if he gets off his medications and enters your program.”
Others say, more or less, “Who do you think you are, to condemn me to Parkinson’s and a lifetime of drug hell just because I took medication for a few months! How dare you tell me not to try and get off the drugs! You must make an exception for my case, and tell me that there is hope. I have the right to be treated by you. The very least you should do for me is train my health practitioner so that he can treat me even if you will not.”
These painful emails are heart wrenching, and yet they do not alter the fact that, in our limited experience, people who have used antiparkinson’s drugs for more than three weeks have ultimately not fared well in our program. Even if these people did attain some benefits from our therapies, the long-term result could not be considered “recovery from Parkinson’s.”
I must make it perfectly clear that it is not our place to “give permission” for someone to take or stop taking medication. A person who feels strongly that he wants to make a change in his medication must consult his doctor and his own “small, still voice within.” If such a one feels certain that a particular course is right for him, though it flies in the face of western convention or the limited experience of the Parkinson’s Recovery Project, then that person must follow his convictions and the callings of his heart. If a person who, on his own, stops taking medication and subsequently recovers from Parkinson’s, we keenly desire to learn about it. But at this point in time, we will no longer participate in such an experiment.
We are working in a research project: our role in this project is to try new approaches and report what we are finding. Our job is not, and has never been, to destroy hope. However, we certainly will not personally offer training or emotional support for a medical situation that, in our experience, has thus far had worse-than-unsuccessful results.
What do I mean by “worse-than unsuccessful?” I will try to explain. Certainly, a person who stops taking his medication and goes through the recovery-oriented treatments will no longer be in the same condition as a person who never takes these steps. But even if this person is able to reverse the processes that set the idiopathic Parkinson’s in motion, his end result may not resemble “recovery from Parkinson’s disease.” A person who stops taking medications and goes through the process to recover from the idiopathic Parkinson’s may end up with a slightly higher quality of life, despite his slowly burgeoning problems stemming from his drug-induced parkinsonism, than a person who does not go through the program. But he possibly may not end this way. The following case study may help clarify my point.
An illustrative case study
I will give a quick example by using the case study of Hjalmar. The first twenty years of Hjalmar’s experience with Parkinson’s, his subsequent recovery from idiopathic Parkinson’s, and his nightmares in drug withdrawal are described in the book, Medications of Parkinson’s Disease or Once Upon A Pill. In the three years that have passed since late 2002, when I wrote up that case study, I have been in infrequent touch with Hjalmar. He has been in a nursing home since his wife broke her hip in 2004.
Hjalmar cannot move. He cannot chew food or talk. He is taking no medication: he can no longer tolerate even an “ineffective,” subminimal drug dose of 50 mg/day of L-dopa. He becomes completely dyskinetic and crazed if he takes even this tiny amount.
Here is the good news: his tremor, one of his first symptoms of Parkinson’s, is now extremely mild and only slightly effects one hand. When I most recently saw him, he was sitting, motionless, in his wheelchair at the nursing home. His legs were stretched out in front of him in the wheelchair’s leg support. His feet flopped gently out towards the outer side of the body. Note: a person with unmedicated, advanced idiopathic Parkinson’s would have rigidity in the legs and a tendency for the legs to be pulled inward, with the feet hitting or crossing over each other. Also, the severe tensions in certain leg muscles in unmedicated Parkinson’s tend to cause flexing of the legs at the hips and knees, bringing the legs into a more fetal position.
When I first met Hjalmar, his legs could not relax. Sitting in the wheelchair at the nursing home, his legs were much straighter than I’d ever seen them, and they were no longer steely hard – they were no longer characteristic of idiopathic Parkinson’s disease.
Sitting in his chair in the nursing home, Hjalmar’s arms were somewhat relaxed; they were hanging easily from the shoulder and bent gently at the elbow so that his hands could rest in his lap. Note: a person with advancing idiopathic Parkinson’s disease will typically hold his arms rigidly bent at the elbows. The pain and tension in the arms can be excruciating. When I first met Hjalmar, his arms were perpetually bent at the elbow and the arm muscles were like lifeless steel, unable to relax. Now, they are more relaxed and comfortable – uncharacteristic for idiopathic Parkinson’s disease.
Hjalmar’s hands, like the hands of many people with advanced Parkinson’s, had been knotted and painfully dystonic. At the time of our very first meeting, his useless, rigid hands had been bent so hideously to the side that his smallest (fifth) finger was nearly touching the side of his wrist. When I recently saw him in the nursing home, his hands were resting peacefully in his lap, with only a small distortion at the wrist as a reminder of his previous deformity.
Sitting in the wheel chair at the nursing home, his head was reclined, resting on a pillow. When I had first met Hjalmar, in 1998, the rigor mortis-like rigidity of his neck muscles kept his head pulled forward so far that his lower jaw and chin rested on his sternum. His neck was always in pain, as were the muscles behind his shoulder blades.
During my recent 2005 visit at the nursing home, I saw that Hjalmar’s neck was somewhat relaxed, and his chin was up in the air where it should be. His head was tipping to one side so I straightened it for him. As I did so, I could tell that his neck was still somewhat stiff and hard to move, but it was nowhere near as rigid as it had been during his years with Parkinson’s disease, and it no longer pulls forward and down.
After I’d adjusted his head, he tried to communicate with me; he made some guttural noises without moving his lips. Hjalmar and I had always had a fun-filled relationship. So I joked, “You realize, of course, that I have no idea what you just said, but since you have always been so courteous, I shall assume that you just said, ‘Thank you, my angel.’ If you were actually trying to curse me, too bad for you, for I shall never acknowledge it!”
In response to my tease, the corners of his eyes crinkled up and his gaping mouth moved open a bit wider and turned up at the corners to form a soundless smile. When I had met Hjalmar, he had been unable to smile, even with his antiparkinson’s medications, for nearly twenty years. The return of his smile had been one of his first recovery symptoms.
In the nursing home, he clearly could not initiate any movement, even though his body was now relaxed and did not hold the agonizing extreme tightnesses and tensions that are characteristic of advancing idiopathic Parkinson’s disease – tensions that Hjalmar had had in full measure, despite the benefits of his medications, when I first started working with him.
He appeared to have no localized symptoms of Parkinson’s disease (symptoms that occur in Parkinson’s-specific muscle groups) and the adrenaline-induced intensity of his personality had been replaced by a peaceful acceptance: I chatted with/at him for half an hour. Though the conversation was mostly one-sided, at one point, when I was monologue-ing my sympathy for him being assigned a shared (two-person) room, I was able to understand enough of his gargling to detect the phrase, “It’s OK; I’m used to it.”
His attempts at whispered, throat-compressed speech had been almost impossible to understand when I first met him. During his recovery, he was able, for a while, to speak clearly and loudly. Now, with his previous adrenaline-induced tensions and intensity gone, but with damage from his past years of medication-use creating a classic drug-induced parkinsonism situation, his throat was somewhat more relaxed but he could barely initiate enough movement to activate his tongue.
Hjalmar no longer had many of his previous characteristic symptoms of advanced idiopathic Parkinson’s disease: he was no longer restless, shaking or tense, and his limbs and head were no longer painfully retracted into the characteristic shape of a person with advanced Parkinson’s. Unlike most people who are taking the anti-PD meds, his mind is clear. (His wife can understand him better than I can, and she feels that he understands everything she says and takes a compassionate interest in news from home.)
However, aside from some feeble eyelid movement, some weak tongue squirming and a tiny bit of movement in his lips, he cannot move. As for giving him antiparkinson’s medications to assist with his movement, that is out of the question. We have already seen, dramatically, that even minute doses of the medications which, in the past, had imparted mobility, now cause him to writhe helplessly and hallucinate (see: Medications of Parkinson’s or Once Upon A Pill / Hjalmar).
But I must be honest; Hjalmar did make one movement that, I think, surprised both of us. As I was taking my leave, I brought my palms together and bowed my head to Hjalmar as I had always done, touching my joined hands to my forehand. Hjalmar brought his hands together in reply and, with unexpected control, lifted his joined hands halfway to his forehead and held them there for a few seconds before his arms dropped limply again to his side. As I gaped in astonishment, I saw that his eyes were twinkling especially brightly as they gazed deep into my own.
Whether Hjalmar might have been better off had he stayed on drugs and not entered our program, we cannot say.
When he entered our program, he would be in pain from the rigidities of Parkinson’s when he was Off. He had not been truly communicative in a deeply thoughtful way in over a decade. His On/Offs from his drugs had become increasingly unpredictable. When he was Off, he was utterly immobile – “stiff as a board,” as he used to say. When he was On, he had been squirmy with dyskinesia and sometimes had difficulty feeding or dressing himself. Then again, sometimes, while On, he could walk or use the bathroom by himself. At all times, whether On or Off, he had been agitated and anxious. He had no time during the day when he could be considered “healthy” or capable of sustained normal function in activities of daily living.
When we first met him, the slope along which he had been sliding was increasingly slippery. He was heading for utter immobility and painful tension. But is his current condition significantly better? It may very well be that he is more relaxed and comfortable now than he would have been had he not been in our program. However, it is also clear that the phrase “recovery from Parkinson’s” cannot be used in Hjalmar’s case.
Of course, many of the other medicated patients in our project had not had Parkinson’s for as long as Hjalmar, nor had they taken the drugs for as many years. Even so, the long-term picture that is emerging for people who ever took antiparkinson’s medication is grim. Even those who had stopped taking medication prior to starting our program do not appear to be capable of recovering in the same way that an unmedicated person is able to recover.
Therefore, to speak of “recovery” in these cases is misleading.
Another “long-term” case study – a case of a patient who entered our program in 2000 – features a relatively younger person who had “only” taken Eldepryl (Selegeline) for “only” one year before stopping the drugs prior to beginning our program. His preliminary improvements and unfortunate conclusion are written up in an extensive footnote in chapter 21 of the book Recovery from Parkinson’s Disease.
Therefore, our new statement for people who have ever taken antiparkinson’s medication for more than three weeks is this: they are not good candidates for our program. We will not treat or advise people who ever took drugs for more than three weeks.
Exceptions to the rule
People who have used the medications invariably assume that their own case will be exceptional: they will fully recovery even if they have used medications. Our own findings are that, in our very limited experience, these assumptions have been proven wrong. No one yet, in our very limited experience, has been an exception.
We will not nurse false hopes, and we certainly must conform to the ideal of “do no harm.” We cannot know for which people the damages of drug-induced parkinsonism will be more dire than the problems of idiopathic parkinson’s, or for whom the reverse might apply. Certainly, it has become apparent to us that anyone who has used the medication for more than a few weeks will have sustained enough brain damage to set in motion, sooner or later, the symptoms of drug-induced parkinsonism. Therefore, we will not work with people who have ever used antiparkinson’s medications for more than three weeks.
We highly suggest that any person who is taking antiparkinson’s medications read the book, Medications of Parkinson’s Disease, or Once Upon A Pill. This book includes much information on how the drugs work, how patients have learned to dose themselves in such a manner that drug damage is minimized, and the doses used by patients who had gotten the greatest number of years of good movement while taking the drugs. This book does not make prescriptive suggestions for readers. This book provides information that a person might use in figuring out for himself the medication course that he wishes to travel.
Historically, these meds retained their effectiveness for up to ten years before the drug-induced problems started and the effectiveness of the drugs waned. Now, as doctors have become more accustomed to these mind-altering drugs, they have become more cavalier about prescribing them. Uninformed doctors, including some neurologists and Parkinson’s specialists, usually, right from the start of a person’s diagnosis, now prescribe the meds at much higher dosages than were used in the 1970s and 1980s. Therefore, most people now have only two to five years, not ten, before the meds cease to be effective and become more of a problem than the Parkinson’s itself.
Our findings suggest that if these medications are used judiciously, the effective period for the medications might be decades – a period long enough to provide for a full and meaningful life for most people with Parkinson’s.
What suggestions do we make about the drugs? We, the Parkinson’s Recovery Project, do not give advice. We will not say that any given individual should start or stop taking medications. We are not prescribing physicians and we cannot, will not, give prescriptive advice. Nor do we think that anyone, even an MD, should give prescriptive advise to a person with whom he has not worked closely.
However, the new understandings about how these drugs actually work in the brain, the time frames of effectiveness and the case studies of people who have successfully reduced or stopped taking their medication – all provided in the book Medications of Parkinsons or Once Upon A Pill – have been very helpful for people who are struggling to make changes in their over-amped prescriptions so that they can get the best long-term use of their medications.
We feel strongly that people need to find their own way through such important life choices. We also wish to note that people taking antiparkinson’s medications are not very good judges when it comes to making choices. The medications work by altering brain function to create a false sense of well-being, wisdom, and even omniscience. It is almost impossible for a medicated person to clearly assess his own situation. Therefore, although people do need to find their own way through the various options regarding Parkinson’s disease, people who are taking medication might be well advised to ask trusted friends or family members to help them make their decisions.
However, if a person with Parkinson’s who has ever used dopamine-enhancing antiparkinson’s medications for longer than three weeks decides to enter into a Parkinson’s recovery program that is based on our findings, we cannot support this person’s decision. We will not accept such a person into our own treatment research program. If he chooses to attempt recovery via working with someone else, we will not offer any advice for such a person or his practitioner. To accept someone into our program or offer advice to a person who is pursuing such a path – recovery from Parkinson’s disease after having used antiparkinson’s medications for more than three weeks – would be to imply that we are hopeful about the results. We are not, and therefore, we will not be a party to these heartbreaking cases.
As for whether or not it is reasonable for a person with Parkinson’s using meds to go through the hell of cautious drug withdrawal and the physical and emotional rigors of recovery symptoms in the hopes that he will somehow, miraculously, not have drug-induced parkinsonism when he is done, we will not say. We will say that, if such a one does go through this process, experiences even a few symptoms of recovery, and then finds that his drug-induced parkinsonism symptoms are intolerable, he will NOT have the option of returning to antiparkinson’s medications; if he has begun to recover, the medications will have become far too strong for him. (The case study of Rudyard in the medications book is an example of this type of event.)
The meds book is full of case studies showing what happens to people who use the medications in even the smallest amounts after having recovered from idiopathic PD. And as for some of the cases in the meds book that looked as if they might have happy outcomes, I must sadly report that, as the last three years have gone by, these outcomes have slowly turned sour or been abruptly disastrous. I will also say that our position is not completely unexpected; on pages 382 and 383 in the meds book, I wrote that, due to the inevitability of brain damage from the drugs or the risk of life-threatening misunder-standings with MDs or hospital personnel, we recommended, even at that time, that a person already using medication should not consider entering a recovery program.
At the time that the book was released, we realized that most people who had ever used the meds could not have a satisfactory recovery, but we were nurturing the hope that it was still possible that some, a few, might: a few people did, at that time, seem to be bucking the odds. We did not wish to dash hopes if there were any hopes to be had. Therefore, although the risks for a person who had ever taken medication were presented in that book, I did not dwell on them. With heavy hearts, we are now changing our position from one of ambiguity to one of regretful conviction.
Recovery from Parkinson’s
On the other hand, those people in our program who were never medicated and who have recovered from idiopathic Parkinson’s disease have not only retained their positive changes, but are continuing to note subtle increases in vigor and flexibility through the years. Our earliest cases of recovery for people with Parkinson’s who never took any medication whatsoever date back to 1998, and those people are still thriving.
We cannot, at this time, point with deep, long-term satisfaction at any case in which a person had used antiparkinson’s medications for more than three weeks prior to entering our program, whether or not that person stopped using drugs prior to starting the program.
We are deeply sorry to come to this conclusion.
We know that millions of people are currently taking antiparkinson’s medications. We hope, over the next few decades, to learn more about the opportunities that exist for people who have already started down the medication road. We know that the problems of drug-induced parkinsonism will soon be a major problem in this country: antianxiety and antidepression drugs, anti-ADD/ADHD drugs, as well as the antiparkinson’s drugs, all can cause the cell changes and cell death associated with drug-induced parkinsonism. With the increasingly rampant use of these legal drugs, we anticipate that the problem of drug-induced parkinsonism will, within a few decades, be in the spotlight.
Of course, since most MDs cannot or do not bother to differentiate between idiopathic Parkinson’s disease and drug-induced parkinsonism, it is likely that the increase in parkinsonism from legal drug use will be wrongly ascribed to “unknown environmental changes that are causing more Parkinson’s disease.”)
We hope that recognition of and a solution to the problem of drug-induced parkinsonism will appear prior to that time. If it does, that solution will also provide hope for people with idiopathic Parkinson’s disease who have taken antiparkinson’s medications for more than three weeks.
But until such a time, those people are not good candidates for our program; we will not treat them, provide individualized advice, or offer false hope.