Dealing with Trauma and Loss in Aftermath of Harvey : By Dr. De Leon

“My Grace is all you need, for my power is greatest when you are weak…” Corinthians 12:9

 

Dealing and coping with tragedy especially when is wide spread like a natural catastrophe can be extremely difficult not just for those directly involved but also for those who are involved in the relief process. Even those indirectly involved like distant family members can experience symptoms of anxiety and depression after the ordeal.

I myself got discombobulated for an entire week from stress and worry of staying in contact with family and loved ones in affected areas. Not to mention staying up all night to hear from loved ones. On top of being glued to the television set day and night like the rest of the nation to see what happened next. My symptoms worsen and my sleep cycle was completely thrown out of its usual pattern. After the storm finally ceased, I slept for three days at various intervals of the day just to allow my body to catch up and deal with the stress.

My heart grew heavier thinking of the thousands of patients who were stuck in their homes with flooding waters all around, or worse rising in their own homes trying to survive and flee; just as my mother’s neighbors had to do in the middle of the night with one of them suffering a stroke. Yet, no medical aid was available to help her and many like her in the entire Gulf coast area. This knowledge only fueled my prayers for the many Parkinson’s friends I have throughout the area.

So as many have suffered strokes, heart attacks, and many others with chronic illnesses like PD especially those in middle to end- stages suffered continue to struggle trying to stabilize their symptoms after being thrown into a whirl wind, perhaps even more than a few being thrown down a descending spiraling path from missing a single dose, the impact can be overwhelming and even paralyzing.  Unfortunately, as many have left their homes in haste without the much need medicines, oxygen and equipment, this descent can be even harder to handle.

Today, I humbly write about ways to deal with this catastrophic loss in an attempt to provide my readers with strategies to cope as well as provide some semblance of hope. Especially considering how difficult it must be to deal with tragedy in the midst of chronic illness even for those of us not ill, the hardest challenge still remains ahead of us- trying to return to normalcy.

So how do we cope?

One day at a time. Again, I say this from the most humble of places having survived several traumatic experiences in my own personal life.

Having PD myself and not being able to work any longer to maintain a significant livelihood much less replenish any material things lost, I can imagine the fear, anxiety, and uncertainty the future must hold.

First, we must be grateful to be alive. Although, as horrific the situation of seeing devastation all around and losing people and things you cherish was and not easily phantom by outsiders. But, if you are still alive you are not only a survivor but a victor.

We might have lost material things, but remember those things are replaceable. Having myself lived through several episodes in my life growing up which required my family to start from scratch each time I can totally empathize with that feeling what do we do now? Where do we go from here? How do we start again? Sleeping on hard floors, having only the clothes on your back, not knowing where the next meal is coming from, what the next day will hold…can be nerve wrecking especially for those of us who are already ill and don’t do well with changes especially not of this magnitude.

Again, I say one day at a time! Rest, pray, rest some more, take care of yourself and your needs first before you tackle the other thousand challenges ahead. Remember it took me 3 days to feel like myself once more and I was NOT even in the middle of the ordeal!!! Give time time…

It’s ok to grieve! Don’t try to stifle your emotions …cry, scream, and talk to others like doctors, nurses, counselors…whom ever to help you heal inside first. You must be honest with yourself. You just survived a traumatic ordeal don’t try to sweep under a rug like nothing happened.

 

But, first before sleeping and resting get your medications in order ASAP.  Then gather your family, friends, and loved ones to help out. Now more than ever you need to stay connected, do not withdraw or isolate yourself. Ask for help if you cannot physically, mentally or emotionally handle the rebuilding alone, in fact you should not go at it alone.

It is of paramount importance to establish a routine once more even if in a shelter or temporarily living with friends and/or relatives… Routine needs to begin with getting medications back on track.

I was not even there personally but just dealing with friends and family in path of Harvey and watching news continually for 4-5 days, I dreamt of being in floods for several days. So I can imagine this might be a recurrent dream or nightmare for many of you as well. Get counseling and help if you need it if you are relieving the event and is causing anxiety and stress (post-traumatic stress- common).

If watching or hearing the news about the flood cause you to relieve the anxiety then limit your exposure to the media regarding this subject.

So after the shock wears off and feeling of relief passes you may experience a whole host of emotions from denial, sadness, hopefulness, helpless, as well as fright.

You might also experience physical symptoms that are common for trauma victims and should not be ignored like poor sleep worse than usual with Parkinson’s, increase sadness, depression, paresthesia’s, headaches (some of these may be migraines due to low barometric pressure in the area as well as elevated blood pressure from lack of sleep, and stress), may also experience increased memory problems, concentration problems, changes in appetite, increased fatigue, palpitations, and increased pain. ( some of these symptoms resemble panic attacks which can be a manifestation of wearing off and under medication – so don’t automatically assume symptoms are all related to trauma).

Make sure you ask a nurse or health professional to check your blood pressure and sugar level (remember dopamine decreases insulin output and stress increases cortisol levels increasing sugar in body) if having increased or usual headaches. Discuss these symptoms with health professional, if you experience any of these changes. Having taken care of many patients with PD over the years, you will likely benefit from increased dopamine to help you deal with these symptoms along with an anti –depressant, anti -anxiety agents ,and/ or sleeping pills till normalcy begins to take place. If you like coffee find some especially black and if you don’t this might be a good time to try. This will boost your energy and help your focus, mental acuity and your gait. However, sleeping meds and tranquilizers like Valium if taken every day lose their affect so I suggest taking every other day intermittently to have a longer positive effect as you deal with aftermath effects. Even though you might not be able to physically go to your physician call them and/ or contact a PD support group locally (HAPS) or nationally (Parkinson’s Foundation) to help you through the process.

Be involved with other survivors…if you are in a shelter talk to other PD patients who might be just as afraid or scared as you are. Help with meal handouts or whatever you might be able to assist with. This will give you a purpose and boost your serotonin levels to decrease likelihood of depression and improve sleep.

Do not make any major life decisions during this time of recovery and grieving.

Above all the recommendations and strategies for surviving trauma of this magnitude is putting your trust in God. This is the one constant which has sustained me through many personal crisis and traumas …during those several devastating situations when my family lost everything not once did we go hungry nor live without a roof over our heads. Some instances, might not have always been the most ideal like when we were forced to be separated for a couple of years due to circumstances. However, we were safe and cared for and those times have served me well in my life in more ways than one. I have learned that no matter how big the storm is eventually the sun will shine once more. Before you know it, you will realize how far you have come and not even know how you did it except for the grace of a God.

Prayers and love,

I am here to talk to anyone who might need an ear or advice on their medications, situation etc. email me @ deleonenterprises3@yahoo.com or call 936-558-7311

You may also call the Houston Area Parkinson’s Society: 713-626-7114

Parkinson’s Foundation Hot line- 1800-457-6676

FEMA is paying for rooms – call and register 1800-621-3362

apply for FEMA aid -www.disasterassistance.gov; 18006213362 (need ss#;address of damaged home, description of damage, info on insurance, phone, mailing address, bank acct # for deposits)

http://kfdm.com/news/local/missed-work-because-of-the-storm-apply-for-texas-disaster-unemployment-assistance

Medtronic Storm hotline- 1800-646-4633

if you have disabilities call Port light Hotline 800-626-4959

call individual pharmaceutical companies for assistance: or general prescription assistance  program 1888-331-1002

call Nord as well

@copyright2017 all rights reserved Maria De Leon

Anger in Parkinson’s Disease? myth, reality or cop- out? By Dr. De Leon

Source: Anger in Parkinson’s Disease? myth, reality or cop- out? By Dr. De Leon

Anger in Parkinson’s Disease? myth, reality or cop- out? By Dr. De Leon

” Anger is an acid that can do more harm to the vessel in which is stored than to that into which is poured…”

 

I thought I would write today about a very sensitive topic for all of us especially for me as of late. it seems that my docile, kind, friendly disposition has been taken over by a “she- Tasmanian devil” I am ashamed to say. As I try to patch and mend the path of wrath I have left in the wake of my anger outbursts this week, I am doing a lot of soul searching as to the cause of this sudden behavior. Surely, I have always been high strong ( and head strong) and known to get heated a time of two but lately it seems this is the norm rather than the exception.  Of course I recall since the onset of my illness the increase proneness to irritability which improved and settled with starting treatment and as my disease has progressed I notice increased bouts of irritability with tapering levels of medication right before the next one is due. So is this a biochemical manifestation possibly. However, what I am talking about here is right out uncontrolled anger outburst set off by the mildest of provocations or difficult situations.

Anger is a real thing in those of us with neurological disease and merits proper attention and treatment!

As a Parkinson expert I know that men are more likely to behavioral outburst and anger which often were attributed to poor boundaries or coping skills or even onset of dementia. However, looking at my own situation I am neither unhappy, lack boundaries, nor am I getting demented yet; I feel at times as if my anger button is suddenly pushed by an invisible fiend -perhaps more prayer is required but what if medication is contributing to these outbursts? I know I should not be bad the situation does not call for such exaggerated response of fight or flight yet, I am like an evil queen ready to defend her throne to the death! perhaps it has to do with the amount of epinephrine in our bodies or perhaps more likely the disruption of the brainstem-basal ganglia pathways involving serotonin and dopamine. for you see, the metabolism, synthesis and uptake of both dopamine and serotonin are intertwined. Both neurotransmitters are both metabolized by MAO  enzymes. Also they sometimes compete for this enzyme. thus, when we create a dysregulation by blocking one or taking more of one than another we are disrupting this fine balance.

After all we take gobs of dopamine and block its degradation in every fashion and form so it must follow its normal path of synthesis- ultimately leading to excess epinephrine and disruption of serotonin, dopamine connections. we are learning that mood disorders are very complex and require treatment with various monoamines because dopamine is just as important as serotonin. Although low levels of  serotonin are the ones implicated in “anger outburst.” These anger outburst seem to be correlated with higher intake of dopamine since I have been writing I need extra dopamine. (losing hours of manuscript did not help situation, I might add). The consequences and side effects however, could be too high a price to pay to be able to function mentally for a few hours. I don’t like myself and feel bad when I get mad but seems I don’t have  power to stop is like a horse once release from its standing place in a race it must run its course no matter how hard I try to stop. These feelings if untreated can potentially cause a vicious down fall with feelings of remorse and shame leading to depression thus increasing likelihood of anger. I knew that my brain was out of sorts and have increased my serotonin producing meds and I have felt normal again.

I have read several blogs and post of people experiencing this same phenomena, which I believe in the past as caregivers and health providers have been too quick to dismiss. I know that dealing with dementia patients this is a common problem even in their lucid states. So, perhaps the microscopic and macroscopic changes occurring in our brains are sufficient enough to disinhibit us especially since part of our primitive brains (entorhinal cortex- including the limbic system, amygdala) involved in emotion are at the core of this disease. I don’t believe that we are angry because we have an illness although, there may be a few out there who could fit into this category. I, for one, have fully embraced my Parkinson’s and have thoroughly enjoyed making a new life. Thus, this theory does not make sense plus this is a sudden uncontrolled behavior. These events have made me recall my own patients, of course all those whom I could conjure up having similar outburst of anger were all men.

This fact however, does not preclude us women from experiencing similar phenomena. I myself was attacked by a PD patient when he suddenly became angry at my medical recommendations. He went from a docile sweet gentlemen to a fierce tiger in less than a second a similar thing happened to a friend who actually suffered grave bodily injuries as a result of such unprovoked attack. Then there is the saddest story of all, one who actually shot his wife in a moment of rage which immediately regretted and  was attributed to medications. This is because we are seriously disrupting this system- many speculate that this disruption is the cause for schizophrenia not just excess dopamine (which in effect is what we are producing in our bodies by replacing massive quantities of dopamine without considering other chemical imbalances caused by this). This disruption in brainstem basal ganglia as a cause of psychosis and out burst of anger are supported by new treatment of PD psychosis with drug Nuplazid (pimavanserin) which acts on the serotonergic system.

I want all my readers to realize that this is a neurological problem that stems from unbalanced chemicals in brain due to both illness and unfortunately to medication effect. As I have often said, the brain is not only a complex intricate organism but is in constant balance and altering one chemical will have many repercussions because of its intricate connections. Thus we can’t simply disregard these and act in a vacuum when treating the many symptoms of Parkinson’s and must always think of what could possibly be affected to try to maintain order. Most common causes of explosive anger is brain injury (trauma, stroke, tumors, encephalitis) or neurological neurodegenerative disease, Parkinson’s, Alzheimer’s, etc.

I know that this is particularly a HUGE problem with those who have end-stage PD especially those with dementia.

Symptoms of Anger /rage outbursts: out of proportion to situation!!!

Things to watch out for preceding aggression:

  • irritability
  • increased energy
  • racing thoughts palpitations
  • chest tightness
  • mad
  • increased tremors
  • tingling

(myself the night before or day of episodes felt almost manic, irritable upon awakening, out of sorts, with increased heightened awareness and energy and racing thoughts)

of course if you have any of these is a sign YOU are out of control and NEED HELP ASAP! if reason has left the building and consequences don’t matter….

  • physical fights
  • property damage
  • threatening or assaulting people/animals

 

Recommendations: Being aware there is a problem is the first step to healing

  1.  Seek professional health ASAP –
  2. Get evaluation for thyroid disorder, metabolic abnormalities and diabetes ( remember that increased dopamine can increase sugar levels)
  3. Get neuropsychological evaluation to rule out depression and underlying dementia
  4. adjustment of Parkinson’s medication
  5. Treatment with SSri’s ( purely serotonin) or preferably compound drugs like those which have SSri’s and NRi’s  ( serotonin plus norepinephrine) like Cymbalta and venlafaxine (Effexor).
  6. anticonvulsants  like Tegretol, Lamictal, etc.
  7. antipsychotics in some cases or Nuplazid if dementia present.
  8. Counseling individual and family
  9. (treatments if persistent behavior should be in tandem with psychotherapy and family therapy)
  10. work on relaxation techniques- since all of us with PD and other chronic neurological disease have trouble dealing with multiple stressors at a time and get easily overwhelmed and flustered- do as I am attempting to do- cognitive restructuring- train my brain not to get excited in face of critical situations just like when I was a doctor  in practice -YOU got THIS! if you lived as long as I have I am pretty sure you have gone through some very harry situations and come out ahead – use that imagery to handle these stressors.
  11. propranalol- sometimes can be used to help with symptoms ( the fact this works shows that there is an increased epinephrine component to anger outbursts).

I should try practicing what I preached a thousand times as a neurologist- when we avoid acting on impulse we are actually rewiring our brains to be calmer and more loving!

Recommendations for caregivers:

  1. do not confront in moments of rage especially if someone demented – because you might incur injury to yourself or loved one.
  2. if destroying property or hurting self call 911- explain they have an illness and need medical care/ call their doctor ASAP
  3. wait till calm to confront and discuss situation if not demented and get treatment – if demented and cant reason get treatment asap as well.
  4. be supportive-
  5. jot down triggers- alcohol a BIG trigger, lack of sleep etc.
  6. what helps to calm them down
  7. create an escape plan
  8. keep all firearms locked away/hidden/safe
  9. call domestic hotline 1-800-799-SAFE (7233)
  10. confide in friends to help in emergency and have a code word or visual sign which means call police

Sources:

Serotonin involvement in the basal ganglia pathophysiology: could the 5-HT2C receptor be a new target for therapeutic strategies? Curr Med Chem. 2006;13(25):3069-81.

5-HT Modulation of Dopamine Release in Basal Ganglia in Psilocybin-Induced Psychosis in Man—A PET Study with [11C]raclopride Neuropsychopharmacology (1999) 20, 424–433. doi:10.1016/S0893-133X(98)00108-0

Imbalanced Dopaminergic Transmission Mediated by Serotonergic Neurons in L-DOPA-Induced Dyskinesia. Parkinsons Dis. 2012;2012:323686. doi: 10.1155/2012/323686. Epub 2011 Oct 11.

http://www.mayoclinic.org/diseases-conditions/intermittent-explosive-disorder/basics/definition/con-20024309

@2017 All rights reserved Maria De Leon MD

Ketogenic diet in Parkinson’s disease: helpful or not? By Dr. De Leon

Source: Ketogenic diet in Parkinson’s disease: helpful or not? By Dr. De Leon

Ketogenic diet in Parkinson’s disease: helpful or not? By Dr. De Leon

We all feel so bad that we at times feel desperate and would do ANYTHING not to feel miserable even eat rocks if we thought this would make us feel better.

So perhaps some of you have heard some in your circle mention a ketogenic diet. But, what the heck does this mean? This is an extremely high fat, normal or adequate protein and very low carbohydrate diet primarily instituted back in the 1920’s for the used of  refractory or intractable epilepsy in children.

However, this is not a diet for the faint of heart it requires discipline and fortitude and above all a good support system. I am afraid that many of the stories that have been circling around in the Parkinson’s sites regarding the exaggerated benefit of the ketogenic diet is just that -a myth. Furthermore upon closer inspection, the ones I have reviewed are not truly considered ketogenic diets some at best approximate a modified Adkins diet. A true ketogenic diet and any diet, in particular in a chronically ill population as we are, requires the close supervision of a dietician. The ketogenic diet typically is begun in the hospital or in a close supervised environment. This is because it is extremely strict with calorie, protein and fluid intake. The name ketogenic means it produces ketones as the body uses fat as its source for fuel rather than glucose as it typically does. The body particularly the brain and other organs like the heart, the eyes, the kidneys are exquisitely sensitive and prefer to use glucose as its main source of fuel in the form of carbohydrates (simple and complex like breads and pastas and pure sugar). The brain alone consumes roughly 20% of the glucose.

The typical diet consists of  3-4 grams of fat for every gram of carbohydrate and protein. The dietician recommends for kids – i imagine same for adults, but don’t have that paper, 100 grams per kilogram (2.2lbs) of body weight and 2 grams of protein for every kilogram. must have incredible disciple, fortitude and a lot of assistance to be weighing in food multiple times a day before preparation. Also eliminates any deviations like surprised birthday parties at a restaurant or night out with the gang because a single day even a meal of going off the diet aborts the entire diet effect. This is the typical 4:1 ratio diet.

It is an extremely difficult diet to keep as you might be able to tell just from my description if you are to do it properly.  Those that do within the PD population only about a third notice some improvement of their PD symptoms. But, even so most can not maintain this regimental diet past 6 months. ( these patients were admitted under the care of a physician in Boston who monitored and regulated their diet daily for months- still only these many improved and could not last longer than 6 months with all the support available to them).

Complications of staying on this type of diet for too long aside from the difficulty of maintaining long term because even a drop of toothpaste can have more sugar than anticipated and throw diet off the curve. Those that choose to enter into this type of treatment should do so ONLY under the guidance of a knowledgeable physician who would monitor routinely their blood and urine among other tests.

Long term side effects of prolonged ketogenic diet:

  • kidney stones
  • increased cholesterol
  • constipation
  • dehydration
  • weight gain
  • bone fractures

plus these persons will need to supplement diet with vitamins since diet lacking in essential nutrients – also as i mentioned before the glucose sensitive organs don’t take lightly to being deprived of glucose and they begin to infarct/ die out. Looking at the adverse effects, these are some of the most troublesome and bothersome problems we experience as Parkinson patients aside from kidney stones and high cholesterol. why would we want to make our lives more miserable?

so in my personal and professional opinion this diet would be at the bottom of the pile to try as last resort if everything else in the world had failed.

resources:

http://www.epilepsy.com/information/professionals/diagnosis-treatment/ketogenic-diet

@Aug,15 2017

All Copy rights reserved Maria De Leon MD

Update on the Role Technology Plays in PD: By Dr. De Leon

Source: Update on the Role Technology Plays in PD: By Dr. De Leon

Update on the Role Technology Plays in PD: By Dr. De Leon

This past weekend I had the pleasure of attending the 200 years after Parkinson’s symposium hosted by HAPS. the staff did a superb job with nearly 400 attendants and a line of extraordinary speakers.

Over the next few blogs i will discuss some of the salient points that were brought up at this meeting. one of the most interesting of topics was the question of what, how, and when does technology help in the daily care and treatment of PD patients?

I know this was a big topic at the world Parkinson’s congress in Portland this past year and continues to plague the minds of both patients and clinicians as well as scientists-  how can we best use this technology already available to help us live better lives?

Although, we live in a rapidly growing technological world – not all people are technologically savvy or able to have access to these wearable devices and other technology. Secondly, even though this type of acquisition of data can lead to more robust numbers, we are not entirely sure how to use it. Moreover, the legal aspects have not been defined. Who owns the data? the doctor? the patient? the creator of the apps or technology? not so simple. But, there is a whole new field that could potentially emerge relating to this.

In my case, the legality is still a big hurtle to over come never mind how to store data so that is secure and get reimbursed for your time. Here in Texas, telemedicine was finally approved for use in various fields which opens up opportunities for people like me who have disabilities but are still cognitively able to be of service to society but navigating the pitfalls and uncertainties of how to provide care from home to a patient also at home is still not clearly defined by the laws. So I wait patiently for my time to be useful once more as a MDS.  especially since it is speculated that > 40% of those PD patients who have medicare DO NOT receive care from a neurologist. Thus increasing the morbidity, mortality and decreasing quality of life and independence.

In the meantime, we must find ways to make use of the technology available to fill in the gaps that currently exist in diagnosing and treating PD patients. We all know that although MDS can have a very high rate of accuracy in diagnosis is not 100 % proof. We do make mistakes and most usually come about from experience and knowledge base of individual making diagnosis. further, we all know that for what ever reason, happens to me all the time, mostly because of stress and anxiety which revs up the dopamine production; we tend to look much better at doctor’s office than at home. Thus, giving sometimes an erroneous picture of our illness. we may supplement our current tools through the use of TOMS- technology based objective measures.

There are 2 forms of TOMS:- (e.g. sleep studies, cardiac monitoring)

1.clinical tests conducted by physicians in standardized environments to objectively measure specific behaviors/ symptoms

2. Self- administered tests- using devices to detect and monitor specific functions or over all abilities in daily life.

We all have smartphones, watches, apps, table based tasks, other body sensors which can be used to acquire data.

However, it was discovered that 32% of users stop wearing wearable devices after 6 months and 50% after a year. Novelty wears off.

26% of apps are used only once, 74% ARE NOT USED MORE than 10 times.

plus, most of the devices only measure motor symptoms- leaving  still a huge problem in dealing with non- motor issues – which in my experience are the ones that cause the greatest interference in quality of life and lead to unfavorable life style changes.

Some on going initiatives to evaluate some of these toms are…

  1. At Baylor college of medicine under Dr. Jankovic direction, there is an ongoing study using a wrist wearable device (Parkinson’s kinetigraph (PKG)– to monitor medication response- you wear for 7 days and you are required to click a button when you take medication. this will generate a relevant report upon which actions can be made by doctor.
  2. Another one is the  EU project CUPID-  closed loop system  for personalized at home rehabilitation for PD patients. their objective is to develop clinical guidelines for developing individual customized rehabilitation programs using technology
  3.  Parkinson’s voice initiative for diagnosing PD – many of you probably have heard or participated in this already- where you simply call in and speak over the phone and make certain vocal sound weather you have pd or not… the crux is to enter enough data from all ages, pd and non pd, both men and women to develop an algorithm that would help detect the difference between a healthy person and one with pd.
  4. Also have the mPower smartphone App for PD ( introduced in 2015 by Apple) – ongoing  looking at tasks like motor initiation, balance and gait, hypohonia and memory. some data like tapping two fingers before and after are being evaluated in those in Sure PD3 ( study of urate elevation phase 3).
  5. another one that everyone can participate in from the comfort of their home is the Fox Insight- this is a questionnaire of virtual visits every 90 days – this is an online longitudinal observational clinical study to generate BIG data – however since findings are not objective the outcome is still uncertain – However- the tools and data within allow the participants to learn more about their illness and how to manage there care best.
  6. NPF Parkinson’s Central- can help provide information regarding disease and treatment and connect you to near by specialist.
  7. 9Zest Parkinson’s therapy app- once you input the required fields it will generate personalized exercise regimen with accompanying videos.
  8. Beats Medical- this app provides auditory cues to help with walking ( $300/year after 2 weeks free trial).
  9. Google glass– this was designed to help with gait and freezing via auditory and visual cues. however, when they put in the virtual reality mode patients did not do well getting patients CONFUSED!
  10. EMMA watch – help with writing via vibratory feedback

In order to be successful these devices first must be minimally intrusive in our lives. these have the potential to radically change the care of PD in the future but several hurtles still have to be over come such as standardizing these technologies, as well as assessing their true efficacy, and validity is not only imperative if they are to be of any value but also remains the biggest challenge to date; particularly as more and more devices and apps become available for patients to use.

If you are participating on any of these studies or have a device or app that you use regularly, i would love to hear from you. I am thinking of calling Dr. Jankovic about the wrist device and are already participating in Fox insight and have participated over the last couple of years in other similar endeavors of acquiring massive data longitudinally. Perhaps some true patterns can  be identified which can lead to new treatment modalities to improve the life of every individual living with PD.

 

@August2017 All Rights reserved Maria De Leon MD

 

 

 

 

 

Demystifying Dyskinesias: By Dr. De Leon

Source: Demystifying Dyskinesias: By Dr. De Leon

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