Neuros and movement specialist

Many pwp are dissatisfied with their specialists. Every neuro is a self proclaimed expert and the best out there! But sadly they only have a few things they can influence with pd:

1) Prescribe meds: l/d, agonists and azilect. Basically if you feel compromised and you have pd then l/d is prescribed and sometimes agonists. If you are early stage and not compromised then perhaps azilect alone.

2) All the motor tests indicate how much dosage is required. But you know that yourself after a while but it is nice to get another opinion.

3) If a person has anxiety and or depression then standard meds can be given.

4) They can monitor the complications from the symptoms, blood pressure, irregular heart beat, joint pains and so on, constipation, etc.

5) They can speak to us as a fellow human beings and try to put our minds at ease.

6) Recommend dbs for some if life becomes intolerable, and this starts a whole new cycle of monitoring and meds.

7) They can suggest exercise, physio for example.

What else can they do?

22 Replies

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  • Not much. We live in a rural area the five hrs of driving to get there not to mention the dangers on the hi way have to be weighed against the benifits which up to now are very little. Our family doctor could ask the same questions and renew our prescriptions They could also do this by tella conference. We have opted to stay local from now on. We are in our seventies and poor health. We choose to live and die at home with all the supports we can get locally and no invasive interventions. We are much happier and content since making that decision. The less they mess with our meds the better off we seem to be.

  • I understand your approach, in most cases it is not worth a 5 hour drive. Tele conference would work fine and self management when possible. I think people expect more from specialists but are usually disappointed.

  • Here in South Africa we especially have a shortage of Movement specialists

    (most -if not all left for better pastures) I suffer from end of dose (Sinemet) dyskinesia

    about every Neuro here confuses it with peak dose dyskinesia,I am having a no go at even getting acknowledgement that this form of this side effect exists. i get severe dyskinesia every

    time my sinemet kicks in or start to wear off.For anyone wanting to know more about this for of dyskinesia pls. google 'end of dose dyskinesia' or ' diphasic dyskinesia"

  • I'm thinking of writing a piece titled Drive it Like You Stole it that focuses in in on prescribing practices of Neurologists but I am reluctant to present my true opinions with this group

  • In other words, they are just guessing like everyone else?

  • No. That doctors begin to recognize that many patients need more than "symptomatic treatment" (dopamine replacement) for psychological as well as physiological reasons. . . and that doctors assume a role of support (blood and urine tests, EKG's etc) for those patients who decide, on their own initiative, to take drugs which appear to be neuroprotective (and that haven't gone through to Phase III Clinical Tests). Rather than advising patients NOT to take drugs until Phase III is completed. The fact is most will be pushing up daisies if they do wait.

  • Support for patients who choose to take (hopefully) neuroprotective meds is great. What's not to like?

  • Thank you!

  • It would be great if they listen to patient. That would be a good start.

  • You would think it is the least they could do. It is a dehumanising experience.

  • As for my Neuro he puts every thing i say (not word for word) in my records. He also reviews my file with me before we start. So it is fresh in his mind. if i need to increase a dose he says ok and i try and report back good or bad. This done on a website called mychart a great way to talk to a dr. I can review my bill or my history also. Talk with a nurse set appointments, as well as pay my bill.I am a cash patient he is not on my insurance plan. Worth $500 a year to me.

  • Hi. It's Pat. I guess I am very lucky . I have a wonderful lneurologist and a wonderful movement specialist. I have been Ile.diagnosed seven years now and in my case medication has been what keeps me going. I have said here before that getting the right mix of drugs has helped me to be able to keep running a business and be quite mobile. If I have dyskenesias they change my meds, tweak them a little and so far thet works. But it doesn't stay that way forever. That 's why I am seen every four months.and I can call in between.

    Right now I have been falling so I know there's PT for balance in my future. I did that before and it helped for quite awhile.

    I wish you could all have these guys for your PD team.

  • Where are you from? We are always looking for a better neuro!

  • I am from Central New York State. Near Syracuse. My wonderful doctors are at Upstate Medical in Syracuse, N.Y.

  • I think there are benefits to finding a Neuro that is most familiar with Parkinson's Patients. My GP that I had been going to for many years did not put two and two together and in fact pooh-poohed the idea I might have Parkinson's when I brought it up. It took quite a while to convince him I had problems and he just chalked most up to old age and hypochondria. BTW -- He no longer is my GP. I have gone to Two other Neuro's before the UAMS Motor Disorder Clinic and I was dissatisfied. The first one diagnosed low B12 (which I did have) but I was not able to convince him that was all there was to my condition. The second Neuro was after my GP finally concluded (since I had a positive response to Sinemet) that I most probably had PD. This Neuro was actually a sleeping disorder specialist. He obviously did not treat many Parkinson patients and gave me some misinformation such as pain is not a symptom of PD, and I felt rushed as if I was wasting his time at the all of 15 minute visit. This group convinced me to find a Motor Disorder Clinic which I was able to do. I now go to University of Arkansas Medical Science Motor Disorder Clinic. The doctor I am seeing spent an amazing 1 1/2 hours with me on my first visit. The benefits I see are that at this clinic it is a teaching hospital and the clinic is specifically for Parkinson's. They are up on all the latest research and in fact participate in the research. They are better able to recognize if a symptom is because of the medication or the disease. Also having doctors that are very familiar with the disease they are better able to notice things that may not be related to the PD and recommend to the GP a course of action.

  • You are very fortunate now.

    Before seeing a neuro I showed my shaking arm to 3 different non-neuro MDs in the course of visits on other matters. No one pooh-poohed it (how could they) but only one even mentioned the possibility of PD.

  • Clinical diagnosis is subjective. Find a movement specialist who listens and one who focuses on pd. By having the same one follow u he can notice the pattern of progression and medicate appropriately. Ive been to johns hopkins, Cleveland clinic and local. Johns hopkins has the program I like even though I live in Florida I go there. They are also on the cutting edge of new therapies and cures.thats only my opinion and experience but my suggestion is be your own best advocate and go the extra mile. Dont let the big egos scare u. Ask ask ask

  • A Perspective

    In your Post, titled: “ Neuro and Moveemnt Specialist”, you asked the question, “what else can they do?”. I found in a book, Mind Over Medicine, by Lissa Rankin, MD a perspective answer to your question. First, she suggests that one’s

    belief can impact wellness. She describes a case 1957 study by Dr Bruno Klepler who reports the story of Dr Phillp West and his patient Mr Wright. Mr Wright (who had advanced Cancer) tdesperately wanted to live, and he hung his hope on a promising new drug called Krebiozen….Mr Wright did not give up….believing the drug would be his miracle cure, he pestered his doctor…..Dr West….injected Krebiozen…..on a Friday…..didn’t believe Mr Wright would last the weekend. To his utter shock, the following Monday, Dr West found his patient walking around out of bed. M According to Dr Kloper, Mr Wright’s “tumor masses had melted like snowballs on a hot stove” and where half their original size. Mr Wright was rockin’ and rollon’, praising Krebiozen as a miracle drug for two months until the scientific literature began reporting that Krebiozen didn’t seem to be effective. Mr Wright who trusted what he read in the scientific literature, fell into a deep depression and his cancer came back.

    This time, Dr West……told Mr Wright that some of the initial supplies of the drug had deteriorated during shipping, making them less effective……but that he had a new batch of highly concentrated ultra pure Krebiozen which he would give him. Dr West then injected him with distilled water. And a seemingly miraculous thing happened---again. The tumors melted way….Mr Wright was feeling great again for another two months. Then the AMA….announced that a nationwide study of Krebiozen proved that the drug didn’t work . Mr Wright lost all faith in his treatment. His cancer returned and he died two days later. Mr Wright’s case is frequently cited in literature as well as several other similar cases.

    [Bruno Klopfer, “Psychological Variables in Human Cancer,” Journal of Projective Techniques 21, no. 4 (December 1957): 331-40.]

    Lissa continued describing the “placebo”. The definition of a placebo is a tablet, liquid, or other form of medication that actually contains no active ingredients, no actual medication. She continues, The next phase of my research led me in search of proof that it’s not all in your head, that the mind’s belief can actually alter the body’s physiology…….I did finally find proof that, at least a percentage of the time, real physiological changes happen in the body in response to placebos. When given placebos bald me grow hair, blood pressure drops…….brain dopamine levels increase in patients with Parkinson’s disease.…….Placebos don’t just change how you feel, they change your biochemistry. Taken from Mind Over Medicine….. “placebos actually change your biochemistry”…… placebos can induce the release substantial amounts of dopamine in the ventral striatum in relation to the expectation of reward (i.e., expectation of clinical benefit). [More

    Findings…..BBC Program Horizons 2014 The Power of the Placebo (locate on You Tube as BBC – Horizons 2014 the Power of the Placebo).] In addition, this program shows an application of acupuncture to treat colitis, provided by Dr Ted Kaptchuk of Harvard, which clearly demonstrates the Healthcare Givers’ Behaviors towards the Patient are a Placebo in themselves.

    This would likely include the transmittal of the Healthcare Givers affirmative beliefs.

    Lissa addresses this later in Mind Over Medicine. Some studies—like K.B. Thomas’s—go so far as to suggest that the doctor, is in fact, the placebo, that the role the physician plays, in and of itself, triggers the self-healing response. We’re left to conclude that although physiological changes experienced with placebos may not be the result of positive belief alone, the placebo effect nonetheless confirms a mind-body link and the body’s innate capacity for self-repair.

    Researchers argue over Placebo Studies and the Therapeutic Encounter….”A sugar pill doesn’t do anything. What does something is the context of healing. It’s the rituals of healing. It’s being in a healing relationship……when we study placebo effects….actually study just the act of caring ….That’s, I think, what we’re measuring”, Dr Ted Kaptchuk, Director of Harvard’s Program in Placebo Studies.

    Dr Kaptchuk research (such as the acupuncture study in the BBC Horizons 2014 Power of the Placebo program ) suggests that the Healing relationship is a Placebo, which provides the patient Compassion, Trust and Hope.

    Dr Kaptchuk discusses his protocol used in this sequence in another YouTube video (Ted Kaptchuk – One the Placebo Effect). Placebo is embedded in provision of Care. What does the ritual of medicine provide people? (in terms of Placebo)Or what does the Doctor/Patient relationship provide? (again in terms of Placebo). Mechanism of Placebo? Placebo provides Compassion, Trust and Hope. The Ritual of Treatment, itself, can be a Placebo. Components of this Placebo: Attentive listening…..repeating the words the Patient has used. Looking at the Patient in his/her eyes. Expressing Empathy. Feeling connected to the Patient……to the serious questions in their lives. Express confidence in outcome. Touching the Patient physically. and Patient feeling Being taken care of by Provider.

    [Reference cited in Book: “One Scholar’s Take the Power of the Placebo”, Science Friday, NPR, January 6, 2012, m.npr.org/news/Health/14479...]

    Impact of Doctor’s Belief

    Lissa continues, while optimism and positive words are key, trust is just as important. Nocebo effects can occur when a patient distrusts medical personal and the therapies they implement. What your doctor believes also matters. In a study published in the Lancet, which investigated the role of endorphins in how placebos relieve pain, researchers found that, despite the use of a double-blind procedure, the expectations of the physicians still influenced how patients responded….If the doctor doesn’t believe a certain treatment will work, the treatment may actually be less effective. Another study conducted by the National Institute of Mental Health assessed 250 depressed patients who were randomized one of four 16-week treatment groups: interpersonal psychotherapy, cognitive behavioral therapy. the antidepressant imipramine, and placebo……researcher videotaped how doctors participating in this study interacted with patients and, based on these video exchanges, asked expert raters to predict who would get well who wouldn’t. Surprisingly, these raters were able to predict this, based on the doctor-patient relationship, regardless of which treatment the patient was given.

    Reference cited in Lissa’s Book. [Fabrizio Bebedetti et al., “When Words Are Painful, Unraveling the Mechanisms of the Necobo Effect,” Neuroscience 147, no. 2 (June 29, 2007): 260-71. p45…. Some studies—like K.B. Thomas’s—go so far as to suggest that the doctor, is in fact, the placebo, that the role the physician plays, in and of itself, triggers the self-healing response.]

    Lissa continues with Think Sick, Be Sick…….The more you focus on the infinite ways in which the body can break down, the more likely you are to experience physical symptoms. Scientists call this phenomenon the nocebo effect. While the placebo effect demonstrates the power of positive thinking, expectation, hope and nurturing care, the necobo effect demonstrates the power of negative belief. (Nocebo…..Latin for “I shall harm”). When patients in double-blinded clinical trials are warned about the side effects they may experience if they’re given the real drug, approximately 25 percent do , experience side effects, sometime severe, even when they’re only taking sugar pills.

    Bottom Line on “Relationships that are Healing”

    What is Received From Doctor or Healthcare Provider “Healing” Relationships?

    Experience Compassion? Has your Trust? Provides You Hope?

    Bottom Line – Belief Can Make All the Difference (Expectations can Heal)

    BillDavid

  • Hi Ozie,

    This question in varying guises pops up fairly regularly on this site. If memory serves I believe the outcome relates more to the relationship between patient(s) & their professional partner(s) rather than the the medical discipline of the lead practitioner.

    So "what else can they do?"

    Unless they are blessed with superpowers not a lot.

    What would we like them to be able to do?

    CURE ME!!

    Will this happen?

    I believe it will over time - how much time I haven't a clue. I think of PD as a syndrome with some symptoms selectively affecting all or most people. In the 12 years since my dx certain givens have changed. Take tremor & freezing for example. The accepted lore 12 yrs ago was that the two were mutually exclusive. I can tell you as a tremor dominant PwP for 9/10 years now plagued by freezing this is not the case.

    We are victims of the success of the time & expertise currently being spent on PD research. Progress is being made on so many fronts reported in the media that it would be easy to believe the cure is round the corner. Back to the question: What would we like them to be able to do?

    For me it would be to have the resources to counsel each each newly diagnosed (dxd) PwP on the benefits of taking part in clinical trials. The importance of being part of research from the outset if possible cannot be understated. I say asap because many trial criteria are age/stage related & if you don't meet the criteria you miss the benefits:

    * access to the best research brains

    * cutting edge technology

    * a chance to be at the head of new thinking & to try new drugs, procedures, treatments

    Lastly, I don't think of PD as a movement disorder - it is much more complex. Neurologists are often extremely well informed in the physiological aspects. If neither has the time or skills to communicate with their patients many of the benefits of this expertise will be lost.

  • God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time…

    We can make it worse if we try

    Retired surgeon with PD

  • Ozie, I was thinking about this very same topic a couple of days ago. I am fortunate in that I live just 10 minutes away from a major movement disorder center that is connected to a major teaching and research hospital. A few times as I have sat in the waiting room waiting to see my doctor, I've overheard other patients and their companions talk about the hundreds of miles they had to drive to get there. I wonder if that level of effort by the patient is really justified, especially in light of how fatiguing it must be for the pwp to make that trip. I think about the help my neuro has given me -- prescribed levodopa and physical therapy. But couldn't any neuro do that? My doctor is a good doctor by all accounts, and I'm thankful for him, but I don't see where all the additional expertise at the movement disorder center has benefited me.

    One complaint I have about my doctor (and it probably applies to many doctors) is that he hasn't investigated other causes that might be adding to all the PD symptoms. Doesn't it stand to reason that the doctors should be aggressively testing for things like malfunctioning of digestion and assimilation of food nutrients, enzyme malfunctioning, blood brain barrier malfunctioning, liver malfunctioning, heavy metal accumulation in the brain, a body's intolerance of common substances, mitochondria malfunctioning, vitamin and mineral deficiency and several other things? Instead, they compare your symptoms with their list of possible PD symptoms and if you have at least 3 of them, you are diagnosed as having PD, given the drugs, and put in a box and kept there for the rest of your life. Real inquiry into the individual's body and brain functioning never begins.

    So, I'm curious. Has anyone's doctor done that type of aggressive testing to look for other, underlying causes of the PD symptoms? If so, what kind of doctor were they, what kinds of tests did they do, and did they find anything noteworthy?

  • That's a great question. Some people have said they are very satisfied with the advice they get but don't say what that is and why it is good.

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