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HELP ! The Doctor needs help !

Ok now, i need your help. Well my friend and colleague Bas Bloem needs your help actually. Or, should i say Parkinsons Disease (PD) patients need your help. Bas has been invited to address the Movement Disorders Congres in Dublin conference at the...

Ok now, i need your help. Well my friend and colleague Bas Bloem needs your help actually.

Or, should i say Parkinsons Disease (PD) patients need your help.

Bas has been invited to address the Movement Disorders Congres in Dublin conference at the plenary startsession. So besides the honor thats a 6000 people party to speak to !

He is challenged to defend the case that diagnosis of PD is only possible by talking to and examening the patient, so by the clinical symptoms approach and that thís approach is better than by pathology (after death) or genetics (that is by bloodsample)

Those who know Bas expect him to involve patients in this debate. I am working with him on one of my passions crowdsourcing for health(care) i btw i just started a brandnew blog for that www.crowdsourceforhealth.com.

So i want to support him with his YouTube call to action, ;ets see what happens so please help.

Please have a look at this nice short little video and give YOUR opinion right here in the comments field, or on twitter (Bas’ twitterhandle is @BasBloem or in the YouTube comments section. Either way please state your “role” like Patient, Family, HealthCare Provider (HCP) i.e.

Bas (must see his TEDxMaastricht-video by the way)  will take those into account and mould the results into his lecture in front of 6000 neurologists and HPC in that field.

So grab your change to change this part healthcare with us 😉

17 reacties

  1. Why this debat?From patiënt view I guess the clinical diagnosis is the most comfortabele and for me as a patiënt I even can control myself. Besides I think it is the easiest and cheapest way of diagnostics which also is in my advantage with regards to mine insurance.

  2. Thank you Bas and Lucien for giving us patients a chance to actively contribute to the MDS conference! Can I just ask for a clarification: when you say "clinical diagnosis", do you mean observing the current 4 cardinal symptoms or do you also include non-motor symptoms?Looking forward to hearing more!

  3. Clinical diagnosis seems the way to go, though it can sometimes seem as though every doctor sees something different. It would be good to have a definitive diagnosis while we are still alive – though with such a spectrum of presentation will that be possible or will some of us always be left dangling, sometimes for many years? The pathology option is for medicine and science not for us……

  4. Sure, here’s my opinion: there’s no such thing as "Parkinson’s Disease". I’ve said the same thing before about "Rheumatoid Arthritis" at rawarrior.com. Will follow up soon with what I mean by this with a blog post at my site Pesonalized Medicine 101. BTW, it does NOT Mean I’m in denial generally about diseases, or that I think they are manifestations of cyberchondria. But it does mean that to separate Dx into only one of 3 categories (clinical, genetic, pathology) is obviously mistaken.Thanks for asking my opinion!- Bob West

  5. The following was posted on http://www.parkinsonsmovement.com by Jon Stamford:Why is PD a "movement disorder"?I have a real problem with Parkinson’s disease. Yes, I hear you say, don’t we all? But it goes further than that. My issue with Parkinson’s concerns its classification. From their first introduction to Parkinson’s in lectures, through their encounters with patients, future physicians are told that Parkinson’s is a movement disorder. And this message is reiterated and reinforced at every encounter. Parkinson’s is a movement disorder because it affects movement, right?Let me be provocative for a moment and put an alternative position.Most people are diagnosed on the basis of movement problems but that tells us no more about the underlying pathology than high blood pressure does about the cardiovascular system. Both are outward manfestations, no more. And Parkinsons is so much more than a bit of stiffness or a few shakes. As we increasingly recognise, Parkinson’s is just as much a complex agglomeration of nonmotor symptoms and mood changes. And more often than not these symptoms precede any motor changes, sometimes by several years. Only when the motor changes allow a firm diagnosis of Parkinson’s are the anosmia, depression, personality changes, and subtle autonomic dysfunctions seen for what they are. And studies increasingly show that motor symptoms and their alleviation are at best only moderate contributors to patient quality of life.The mere fact that we cannot yet confidently diagnose Parkinson’s on the basis of these prodromal symptoms should not blind us to their existence. Once you accept and acknowledge their existence as a part of Parkinson’s pathology, you’re led to the inevitable conclusion that the motor changes are merely a late stage manifestation of a much more complex condition, rather than a central pillar of the pathology. Tremor, rigidity and bradykinesia and diagnostic hooks and Parkinson’s is not primarily a motor condition.

  6. Since there aren’t effective diagnostic tests for Parkinson (at least not today) and its diagnosis is based on clinical symptoms I guess I would have to go with Bas’s arguement (who is a great speaker btw). Nevertheless, i hope that in the future we could have a reliable genetic test for this degenerative disorder, along with a way to meassure/monitor the personalised enviromental factors in more depth.

  7. I am not interested in a how I am diagnosed. In my case I was asked a few questions and then to walk up and down a hospital corridor and from observing my gait (I assume) I was diagnosed. Not particularly clinical, but it worked for me. However if one is able to diagnose postmortem pathologically, or using a gene based blood test, then to me it means that the medical profession understands a great deal about PD and that can only be a good thing.

  8. Als long as the knowledge about the cause of Parkinson is not complete we can’t use means that rely on a hypothesis about the cause. So bloodork might be nice for science, it’s not yet a 100% reliable to diagnose Parkinson.As Parkinson gradually enters the life of a person and his environment, people adjust as far as possible to the changes, until changes become problems.In a time that politicians and policymakers don’t want to spend too much money on the wellbeing of people, we can say that a clinical diagnosis fits in this line of thinking. People present themselves or their loved one when they need help. That makes assessing in the hands of a good, knowledgeable and trained diagnotician relatively easy and cost-effective.It’s also more targetted, as only those problems are addressed that influence daily life.(Bloodwork might even be done before symptoms are clear enough to cause problems, Do we want that? It might even be unethical to present a person the diagnosis before he or she experiences symptoms.)I would not involve the patient by himself, but also key figures in his life, like family members and friends.

  9. If there is no clinical diagnosis, a patient will not go to see a doctor, and then there will never be a body to examine upon death fro any signs of disease. A patient goes to the doctor for help with the disease in life, not for help after death, so what would be the point of diagnosing after death. If there were an easy blood test, it would help once the patient goes to see a doctor. But unless the patient has the major signs that bring her to see the doctor, none of the rest can happen. We who have this disease know we have something serious when we seek help. We may not have the name for the disease, although I had figured mine out by doing an internet search. Diagnosing without the patient in a clinical setting is fruitless, as what is the point of diagnosing unless is it to treat? The patient needs to have a choice in the treatment decisions of this serious disease.

  10. In my opinion, the chemicaly-based environment we inhabit is why PD exists. I tthink some confusion surrounds the issue of genetics versus environment; for example, when one person says, "my mother had PD", that person overlooks that perhaps they both have PD because they were exposed to similar environments or chemicals. I worked in broadcast production for many years, using a very strong, highly odorous chemical to clean the playback/record heads of tape decks in an enclosed studio. The label warned of physical damage if the chemical was inhaled on a regular basis, but I was young and invincible…and foolish. One of the most convincing arguments I have heard relating PD to the environment is that it was brought to our attention at about the same time as the Industrial Revolution. I am amazed at what seems to be this tragically laughable situation where we are seeing commercials on television that take 20 seconds to tell you how this new drug could possibly change your life for the better and then use the last 10 seconds to tell you how many side effects ("…possibly even death!") you might encounter were you gullible enough to take such drugs. As regards the variety of diagnoses that one might get from different neurologists, I am convinced that a person needs to get the opinion of a movement disorder specialist. One cannot expect a general neurologist to know the intricacies of every possible brain malfunction. That was my experience, going to a general neurologist, receiving the PD diagnosis and then given medication that created a zombie out of a happy-go-lujcky guy. I was encouraged by another PWP to see Dr. Elmyra Encarnacion at Scott White in Temple, Texas. She is a movement disorder specialist who brought me figuratively back to life. Thank you for letting me vent. I believe that I have seen you on some TED videos on YouTube and I wish you the best on your upcoming presentation.

  11. For all the difficulty doctors have in making the diagnosis, patients themselves can spot a fellow parkie in about 30 seconds. At this time, I think it is a clinical diagnosis.

  12. Many thanks for these reactions! I agree Parkinson’s disease is NOT one disease, but much rather a SYNDROME. I was also happy to see the reactions of patients, this view is very much what I was considering to present on Monday. A clinical diagnosis is what counts during life, but a single blood test – if it would exist – would really help. Will also discuss the role of brain MRI and other tests, which to my mind help to confirm what the clinician was already suspecting. I will use these comments in my talk for tomorrow!Best, Bas

  13. It is also intersting to see and read about the support for the alternative viewpoints, namely that genetics could be important if it speeds up diagnosis. Many of you have commented on the lack of value of genetic tests when subjects are not (yet) experiencing symptoms, and this is very true. In fact, insurance companies may abuse this and not accept disease carriers anymore! But this wil change once disease modifying treatments become available. These are non-existent to date, but hope is underway, including e.g. physical exercise. Post mortem brain tests will always come too late. To my mind, patient’s symptoms and priorities will always remain crucial, not only for diagnosis, but also for the management tailored to the specific needs of each indvidual patient!

  14. This ought to be a short debate!post-mortem is of no use, especially if we wish to develop therapies which are effective on the living and;genetic testing presupposes that’s it’s a genetic disorder. Self-fulfilling non-prophecy.Once you’re in the PD ballgame, it really ought to be patient-led, because we know best … why? Ask any PWP. They’ll tell you.

  15. In the narrow sense diagnosis is labelling a condition. As in all areas such classification may help in formulating theories and vital in communication. On the other hand has its dangers in suggesting the uniform treatment of such a diverse syndrome. In fact some of this thinking is already causing harm. Most notably, the dogma that PD is incureable (doubtless there is no existing replicable intervention) took all documented cases of recovery off the radar regarding them as cases of misdiagnosis (solely on the basis that the symptoms stopped). Just think about this, in the same vein, you could say any disease is incureable and treat all healed cases as misdiagnosed. Instead longitudinal studies should focus on such cases of ‘misdiagnosed’ PD and explore ways patients in question recovered. Diagnosis linked to treatment also has its dangers, it is often explicitly included in PD diagnostic that it is levodopa-responsive: movement symptoms alleviated by levodopa. Such a concept of diagnosis by intervention is gravely dangerous in two ways. First in that it puts all the research focus on aspects of PD that the intervention remedies and downplays other aspects of the syndrome not helped by it. If all evaluations are biased towards the former aspects many can inadvertantly be led to believe that the treatment is more useful than it is. This fallacy is clear in the debates about PwP quality of life schemes and their contraversial use in drug trials.Secondly, successful intervention (levodopa treatment) in alleviating symptoms is also responsible for pushing a localist dead end of research trying to find a cure for parkinsons by replacing dopaminergic function rather than restoring dopamin production. The former sees the cause of PD where effects can be best localized, while the latter recognizes that loss of dopaminergic function may be itself a consequence of some more elusive system imbalance (for want of a better phrase). This allows for opening our minds to more subtle aspects of PD, we all nudge nudge wink wink about but which prove so elusive to assess (mood, attitude, motivation, autonomic malfunction, etc). I am a patient with PD (38yo, unmedicated, diag in 2009) dedicated to promoting patient involvement in directing research. hope this helps

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