fluctuations in parkinsons, parkinson's disease

Demystifying Dyskinesias: By Dr. De Leon

Today, I though I would talk once more about the dreaded D- dyskenesias-

We have all seen patients and heard stories of the horrible life of having dyskenesias – many are so terrified that they avoid taking medications altogether.

Are all involuntary movements dyskenesias? No! some parkinson’s patients along with parkinson’s plus  and parkinsonism patients can have other types of movements like

  • chorea– irregular, spasmodic, involuntary movements of the limbs or facial muscles, often accompanied by hypotonia. This can occur as a result of stroke, tumor, infection, benign, part of Huntington’s chorea which may also develop parkinsonism after treatment.
  • myoclonus spasmodic jerky contraction of groups of muscles. this can be benign, can be seen occasionally in parkinson’s patients, also as a result of stroke or nerve damage. Seen in the palate with people with migraines sometimes.
  • alien -hand A clinical finding in which there is awkward asymmetrical involuntary movement of the hand or limb, which is interpreted by internal sensors as ‘alien’; the patient’s limb moves as if of its own volition. This is characteristic of CBGD- corticobasal ganglionic degeneration.
  • seizures- like focal seizures – which can be caused by strokes, tumors, mithochondrial diseases, other genetic disease like DRPLA
  • tardive dyskenesias– abnormal movements due to anti dopamine medicines or withdrawal of antidopaminergic meds, also seen with various medicines like lithium, depakote, reglan, phenergan long term intake
  • tics- not seen in PD
  • RLS– are part of parkinson’s and other parkinsons syndromes like MSA – these have more rem and periodic leg movement of sleep
  • -ataxia- wide base gait, slurred speech, incoordination of eye and hand movements. machado’s syndrome, strokes, cerebellar disease, ataxia syndromes, dentatorubropallidoluysian atropy (DRPLA)
  • hemifacial spasm- involuntary contractions on one side of the face
  • painful legs moving toe syndrome

As you can see there are several abnormal hyperkinetic (unwanted or excess) movements disorders some of which are symptoms and whole diseases by themselves. any of which can occur in any one given individual but the key is the timing and relation to other symptoms and medication intake. also important to note that only idiopathic Parkinson patients develop dyskinesias. dysk

If you have any of the above plus parkinsonism especially if not responding to medication, have more confusion at early stage, bladder problems or even balance issues especially if gait is wide – you are NOT dealing with idiopathic Parkinson’s disease and warrants further evaluation.  also of importance if it seems there is a strong family component or heredity to these movements most likely NOT Parkinson’s disease.

If Parkinson symptoms began after being on anti-psychotics, anti emetics (nausea medications), sleep aids, lithium, or depakote then you don’t have typical PD most likely.

Now let’s say you got diagnosed with PD and were responding well to treatment and then suddenly one day you just began having abnormal involuntary symptoms on one side of body or just one limb and is constant or lasts only a few minutes- this is NOT dyskenesia until proven otherwise need to rule out seizures, strokes and tumors. Especially if you have only been on levodopa a very short time.

So okay in the old days the majority of people got dyskenesias and they had to live with them most likely, that’s because we had a very limited number of treatments and the best medicine was levodopa so very soon after diagnosis EVERYONE was on levodopa. What happened when patients symptoms advanced? Since we did not have better treatments we simply kept increasing the dose…asking patients to take more and more often as the receptors got over saturated subsequently having fewer and fewer positive effect only increasing the side effects..dyskenesias among others.

At the beginning of my training it was not uncommon to ask  patients to take levodopa every 2-3 hours and asking them to take 1/2 and 1/4 tablets at a time- However because they have carbidopa we were never able to make the doses quite right. when all else failed before the pallidotomies, thallidotomies  and hospitalized people for “drug holidays”. But fortunately in the mid 90’s things started to turn around for people with parkinson’s with the addition of dopamine agonists, then came Comt inhibitors, DBS and mao inhibitors. When I was in practice, I only had a handful of patients who took levodopa every 3-4 hours – and that was because they were already on Comtan and could not take inhibitors, could not do DBS and also were already on MAO inhibitors. But when the neupro patch and Stalevo formulations came out so many of those patients who took levodopa more than  3 times a day were able to cut back hence reducing the occurrence of dyskinesias or ameliorating them completely. As i have said many times before there are so many drugs that most of us should be able to find the right combination without overdosing and the KEY to preventing and decreasing these is taking small doses of various medications – a cocktail, kind of like the mambo #5 song-  a little bit of  Mardi Gras.. a little bit of Rita, little bit Erica.. a little bit of you.. so a little bit of levodopa, a bit of dopamine agonist, a bit of mao inhibitor, a bit of amantadine, a bit of comt inhibitor and a lot of you. if you are unable to tolerate meds and that’s the reason you take more than 4 doses of levodopa or because of cost of the others ..first comtan and Stalevo generic – although, I hate generics..generic stalevo which comes in 75, 100, 175, 200, and 225mg could not only solve a lot of these problems but also make it easier on your wallet and stomach because would be taking fewer pills.

Even after 10 years of PD, I take Parkinson’s medicines only 3 times a day- only when i travel and give lectures do I sometimes take 4 times a day – because if i need more i can substitute the rytary or stalevo for a higher dose. The other option for people that have busy active lives or cant tolerate medicines or have to take more than 4 times a day is to discuss with physician about surgical procedures like DBS. You should not be intimidated about taking levodopa because unfortunately not only is it the gold standard but it is so for good reason- because dopamine is the center of our being! dopamine agonist can only go so far in producing dopamine in the brain we need the actual substance to help us feel like ourselves again. i have discovered through the years of having the illness myself that is the lack of this which makes us forgetful, feel like we don’t care, feel anxious and even depressed to a certain point because serotonin is also needed for the latter. so by shying away we are doing ourselves a huge  disservice. this is the reason people keep adding more and more dopamine (levodopa) when they start feeling anxious – increasing the dopamine level is the right track but NOT by adding more levodopa (sinemet) because what happens if you keep pouring water over a glass that is already full? the excess is simply going to spill over right!  but if you are still thirsty need more levodopa since you cant fill a glass more than when is already full you simply drink more glasses of water- in essence this is what we try to do replenish the dopamine by circumventing the saturated receptors so we block its degradation ( mao inhibitors and comtan) so it last longer, we add substrate at the beginning of pathway to increase the production so when that dopamine blocking receptor falls below level you have more on the way ( another glass coming).

I hope this helps illustrate the need for early treatment with levodopa and also to consider taking more than one type of medicine to help keep you active and with fewer side effects. The best way to help yourself when already having dyskenesias is sketching the pattern, (when, how long, predictable, times a day?); if there is one medications can be adjusted and/ or DBS can done. If not pattern to involuntary movements they are random and unpredictable usually only way to treat is with surgical procedures.

 

@July2017 ALL rights reserved- Maria L. De Leon

 

 

movement disorders, parkinson's disease

Tardive dyskinesia’s: By Dr. De Leon

  • Today, I want to discuss a movement disorder on the rise due to increase use of neuroleptics and new indications for dopamine antagonists have increased over the years thus increasing the number of patients at risk. Also because some of the initial symptoms of this condition are acute extrapyramidal symptoms (EPS) like stiffness, slowness, and tremors; if not caught early can lead to full blown tardive dyskenesias (TD) or be inappropriately diagnosed as parkinsonism or Parkinson’s plus syndrome (e.g. multisystem atrophy) causing undue disability and frustration among patients and clinicians alike.

 

The most common symptoms of tardive dyskinesia are: occur after EPS

  • Grimacing
  • Tongue protrusion
  • Lip smacking
  • Puckering and pursing
  • Rapid eye blinking
  • Rapid movements of the arms
  • Rapid movements of the legs
  • Rapid movements of the trunk

First of all, tardive means late dyskinesia’s. These are abnormal involuntary undulating movement s often involving the face but can be seen in other parts of the body such as the extremities and trunk.

Why is it important to know about tardive dyskinesias? These are not to be confused with dyskinesias seen in Parkinson’s as I stated above but rather a secondary effect of long term dopamine replacement.

As the name implies these abnormal movements occur late after a prolonged exposure to dopamine antagonists ( blockers) such as anti -psychotics (particularly older)- e.g. Haldol; anti- nausea medicines- e.g. Reglan; anti-depressants- e.g. respideral. certain groups are already at higher risk like those with mental illnesses such as schizophrenia, cognitive or mood disorders  as well as those who are diabetic, have alcohol use or are immunodeficient, and/or  elderly. The risk goes up from ~13% to 50% with age and prolonged use of these medications.

of note: dyskinesias can appear after stopping medications which cause this and may even disappear weeks later. These are known as withdrawal dyskinesias.

 

Conditions resembling TD:

  • oral movements from ill fitting dentures
  • autism
  • chronic motor tics
  • Huntington’s chorea
  • restless leg syndrome
  • Tourette’s
  • Wilson disease – disorder of copper regulation
  • senile chorea (old age)
  • Meige’s syndrome ( face dystonia )
  • drug induced
  • Sydenham chorea ( associated with rheumatic fever)

 

Even in routine careful examination TD may be difficult to detect early by non specialists especially if a good history not taken. this is due to fact that agents causing problem can also mask the symptoms. doctors use a scale AIMS- abnormal involuntary movement scale

Usually is family that bring movements to attention of doctor!!!

Because in many cases people have been left with life long abnormal movements we must minimize the occurrence by minimizing drugs that are dopamine blockers and if needed using lower doses and shorter periods of time. Treat as quickly after it appears!

Treatments:

  • Tetrabenazine
  • reserpine
  • melatonin
  • donepezil ( Aricept)
  • vitaminB6
  • vitamin E
  • Valbenazine (should be available soon- better efficacy and tolerability than any to date)
  • AMANTADINE has no PLACE here…

Parkinson’s dyskinesias  on the other hand are due to prolonged use and exposure of dopamine agonists.  The best way to treat and diagnose these are keeping a diary of when abnormal involuntary undulating movements occur at peak dose, at onset, or at end of dose.

Time if they are predictable or random? as well as duration? are they painful?

Treatments for PD dyskinesia:

  1. prevent by using smaller doses and multiple mechanisms of action ( i.e. MAO inhibitor + dopamine agonist + levodopa)
  2. adjust medications i.e. shorten/ increase frequency of medications
  3. add amantadine ( shortly should have a new formulation of amantadine available to add to our armamentarium of drugs- Key treatment
  4. DBS  ( deep brain stimulation) is the gold standard treatment- discuss elsewhere in my blog.

When in doubt as to kind of movement disorder you have take a video and go see your MDS/neurologists ASAP many treatments are available.

 

As a side note: I would like to thank all of my readers and followers for making this blog one of your favorites as well as one of the top 50 blogs in topic of PD. could not do it without your love and support. Many blessings and Happy Valentine’s Day! <3 <3

 

 

parkinson's disease, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

Dyskinesias- 8 Tips to prevent & manage DYSKENESIAs: By Dr. De Leon

The things I have learned about dyskenesias in a nut shell.

They are not a sign that you are having fun because you look like you are dancing even if they occur at the beat of   your favorite tune.

yes, although most of the time you prefer over being off or stiff, you can’t wait to go to sleep so the movements  can stop.

although, they are a great form of exercise you wish you did not have to exercise so much to look so great!

dyskenesias are great for doing the twist and Mixing fruit salad but not for putting on make up or reading a favorite book.

Is there a solution to dyskenesias?

yes…

mind you is not an easy feat….

The first thing to remember iS that is much easier to prevent than to stop once they occur.

Key points women are more likely to develop dyskenesias than men.

altough, We as patients know our bodies best and know a lot about Parkinson’s disease we should not manage our own symptoms without the guidance of a professional (MDS).

One, because it is very hard to be objective when it comes to our own disease state.

Second, most of the time what we intuitively think should be the right thing to do is not always the BEST treatment plan for the long run of the disease…this is where experts like myself and other movement disorder specialists come in handy.

Third, as I have mentioned many times before, anyone can treat Parkinson’s in the first stages because it will respond to any and all PD medicines; however as disease advances the expertise in the art of treatment provided by a seasoned specialist is indespensible. This is where knowing how to treat rather than what to treat with becomes crucial.

Fourth, when I was in practice it was common to see my first stage PD patients 2-3 x a years unless they needed something because they were pretty autonomous; but as Parkinson’s progressed the frequency of the office visits increased as should your visits to your physicians. It was usually every month to every 6 weeks  evaluation in my late stage disease patients and 4-6 times a yeAr for middle stages.  Even though, I understand as a patient we all get tired of visiting and going to the doctor, unfortunately this is the type of commitment that is required to keep DYSKENESIAs at bay and control before they become intrusive by adding medications like amantadine, Keppra, zonegran, comtan or Tasmar (or STALEVO which I love because it has so many doses ranging from 50 mg to 225mg) and adding long term release intermixed with short term and intermediate release.  Also things like DBS and other surgeries like pallidotomies; apomorphine and even Botox injections if have focal DYSKENESIAs or dystonias are great treatment options with proven benefit and low risk in the right hands of experienced physicians.

Fifth, although certain autonomy is allowed for patients it needs to be evaluated frequently because invariably most patients will overdose creating more side effects and DYSKENESIAs. More is not always better…we feel bad can’t walk, move, talk, swallow so we not only increase our doses but start increasing frequency sure way to develop DYSKENESIAs faster ! The key is to mix dopa agonists( especially NEUPRO because the continuous release will potentials the effect of levodopa giving it a more continous star in your body without having so many peaks and valleys), MAO inhibitors along with dopamine in various forms…don’t be afraid of taking several types of medications this is how you get the most benefit without having to take such large doses of levodopa and keep number of times you take medications down ( e.g. 4-5 x a day instead of every 2 hours).  We have so many new choices now.

Sixth, remember that dopamine agonists and amantadine effect usually work for several years in the range of 5-7 years after which their effect starts to wane but after a small period of rest ( 1-2 years off these medications) they can be again reintroduced having again a positive effect.

Seventh, It is recommended that around the time you enter the middle stages of disease (3-4th stages) every patient should start keeping a calendar of every medication taken. This needs to include time of intake of each medicine along with name, how long it takes to kick in ( what do you notice when it kicks in), how long each medication last,  can you tell when it wears off- what do you notice and the does medicine wear off suddenly. your doctors usually have copies of these calanders in their office, you can get from them or get from the website Or create your own. For instance, I can tell you that my azilect helps my pain & walking, my Neupro helps my vision and my STALEVO helps my brain feel “on.”

Eight, most important advice to prevent and stop these intrusive involuntary movements which make our lives miserable is early DBS before they start…if you Wait till after they start it will take longer to find right setting. when DBS setting is adjusted in brain It is imperative to adjust medications at the same time  for maximum result so need to find a doctor who can program in office and has extensive experience – this is one of those art things where experience truly dictate outcome. Patients with DYSKENESIAs by definition have already more advanced disease taking more medications therefore adjustments have to go even slower for maximum results which can be extremely frustrating. so find someone close by because will need a lot of visits; if not able to travel frequently to maximize benefit then should consider doing pallidotomies instead.

Parkinson’s disease is an extremely complex disease encompassing multiple body systems outside of the brain thus in order to have the best quality of life is to have disease managed by a movement disorder specialist who serves as the conductor in a well orchestrated performance involving many other subspecialties (including Gi, neurosurgeons, dermatologists. Urologist,internist, anesthesiologist, ENT, and ST, PT, and OT).  Together they can allow you to dance in whatever fashion you desire without the presence of DYSKENESIAs.

chronic illness, parkinson's disease, parkinsons health and beauty tips, research in parkinson's disease

DYSKENESIAs: The Dreaded “D” Word in Parkinson’s: By Dr. De Leon

Dancing, dystonic, discombobulated, distraught these are all ways people with Parkinson’s feel when contemplating the possibility of a life with dyskenesias after the initial shock of receiving a diagnosis. Yet, the reality is very different in my experience and to those who have studied dyskenesia epidemiology. Patients have been so fearful of Levodopa to the point of either avoiding medications all together or worse seeking help from a physician thus prolonging their diagnosis and making their disease symptoms worst and decreasing their chances for a good quality of life. Even when patients agree to start medications some have had have great trepidation in increasing the doses or stayed only with Dopa agonist despite severe side effects as some of you might have read the story of a young man with PD who was afraid of starting Levodopa compounds so even though he was experiencing severe side effects in the form of unprecedented gambling with the Dopa agonist, he continued to take the point of almost losing everything including his marriage. It was until he was on the verge of losing it everything that he cherished that he reluctantly agreed to stop taking the Dopa agonists and go on Levodopa to find out it made all the difference in the world. He is now putting back his life together and his symptoms seem to be better controlled according to his blog. Few things that might help you as a patient or caregiver decide which path to take early on when deciding on agonists vs. Sinemet or a Levodopa compound by whatever name you may know it in your country. First, remember Levodopa is your friend NOT your enemy! As I have stated in previous blogs and according to all of the new literature release on the subject- Levodopa is both neuroprotective and neurotrophic. By starting early treatment with this compound in the disease can actually be extremely beneficial since it appears to retard disease in ways that agonists do not. But, like I mentioned in my previous blog this like dopa agonists all have their own unique side effects. The key is learning how to balance their intake and when to use what and in what amounts. Dopa agonists have more sleep attacks, blood pressure problems over all as well as more potential for weight gain and water retention and in men gambling and other OCD behaviors but less risk of dyskenesias. As far as dyskenias are concerned it is interesting to note that the concern and fear is highest for all patients men and women alike independent of age at time of diagnosis or at early onset but as time goes on and disease progresses the concern with dyskenesias decreases. Even in the face of dyskenesias, patients who have these do not seem to mind them when asked out right, it is actually the wearing off and suddenly being unable to move that causes the anxiety and trouble when the disease advances. Dyskenesia look bad as do tremors but if you ask a patient are they bother most do not even notice them or care they have them is the spouses or family members or doctors which get concerned. I have set across many patients and friends with varying degrees of dyskenesia all of whom had told me that the movements did not bother them in the least and some were not even aware until I pointed out as to what I was referring to as an involuntary moment known as a dyskenesia. They all then proceed to state however, they did not like the feeling of being stiff and unable to move so rather be like this. Tremors like dyskenesia should be treated only when they are causing problems for the patient and interfering with activities of daily living. The excess movement is okay unless causing severe weight loss or gait balance difficulties…but what worries most physicians about dyskenesia is that once a patient develops these fluctuations, this is an indication of poor medication regulation by the body and brain which can result in sudden wearing off leading to more devastating problems like falling, chocking, and pain. The truth is that the fear is greater than the actual reality once it sets in and although it is believed that 80% of PD patients develop these within 5-10 years after diagnosis, it is important to know that women are more likely to develop this phenomena compared to their male counterparts secondly these can be delayed if agonists are started early or in combination with Levodopa compounds, other risks are younger onset of disease and duration and doses of Levodopa. Since, young onset PD in women seems to have the highest risk of developing dyskenesias, perhaps these are the ones to delay levodopa some and /or give much smaller doses in combination with dopa agonists or use levodopa with COMT inhibitors to prolong or extend the life of Levodopa compounds thus reduce the total amount consumed and decrease fluctuations. This has worked well for me in treating patients in past. Further, maybe we as physicians need to change our early treatment strategy based on gender and potential for dyskenesias weighting the risk compared to other more serious side effects like gambling. Next time you know of someone diagnosed with PD or a physician suggest that you or a friend start taking Levodopa don’t shy or run away from idea simply on the basis of being afraid of developing dyskenesias. Discuss the issues in detail with your physician most importantly the need for combination therapy to maximize medications benefits and minimize side effects of each always taking into account your gender and what we have learned thus far about how different genders respond to different medications. But above all, remember that NO TREATMENT is ONLY going to Harm you in the long run and shorten your independence and DECREASE your Quality of life. So imperfect treatment is BETTER than No TREATMENT at all!!

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com