alzheimers, confusion, dementia, LBD, parkinson's disease

Could I have Lewy Body Dementia?: by Dr. De Leon

I used to fear that taking medication would change my personality; now i fear that it won’t.” ~David Levy

In the last month and a half I have been dealing with (upper respiratory) infection after infection which have really got me thinking about the causes. Plus the severe dysautonomia which I have experienced recently, being a neurologists, I thought oh my!- this is one of the things that happens and usually the reason (recurrent infections) why people with Lewy body dementia (LBD) succumb to the illness leading to their demise.

I don’t have LBD however, i thought it would be a good time to discuss the clinical presentation of this illness compared to Parkinson’s. Funny thing though, I was commenting this observation with my BFF whom i was traveling with and I said jokingly – “ I know i am not demented” so can’t have that awful disease. She looked at me and responded ‘no not like all the people we have met with disease.’ I gestured in agreement. “but, your personality…” I immediately sat up becoming paranoid, ‘what’s wrong with my personality?’ I asked. She just smiled at me.

Sure I have become more outspoken but that is a factor of my getting older i assume not because of anything organic but just to make sure i had to ask a few people that known me for a long time and the conclusion- i am same crazy, stubborn, energetic, outspoken girl. ( ooh-thank God, what a relief- and don’t ask me to remember cliches because I have always gotten mixed up!)

But unfortunately the reality is that there are too many people out there who do suffer from this terrible disease which is a combination of Parkinson’s and frontal dementia/ Alzheimer’s.  I have seen too many friends and patients spiral down quickly.

So, I would like to talk about what we know about LBD and how we may improve the lives of the patients and caregivers. unfortunately, there is no cure and no specific treatment for this disease as with many other neurological illnesses.

This is the 3rd most common type of dementia affecting ~5% of those older than 75 years of age.

Symptoms which are features of both Alzheimer and Parkinson’s make it a particular challenge in diagnosing. However, the KEY  to diagnosis is the presence of pronounced visual hallucinations, psychiatric overtones and autoimmune problems from day one which then leads to a rapid and pronounced cognitive impairment, along with rigidity, freezing, and severe Rem behavior (often preceding) cognitive symptoms.

Interestingly, Sleep disturbances like REM behavior occurs in about 60% of  parkinson’s patients while an upwards of  80% is seen in MSA ( multi-system atrophy) and LBD.

Most people live on average of 5-8 years after diagnosis but some have lived up to 20 years.

Clinically:  Patients have vacillating or oscillating symptoms fluctuating from near normal to severely abnormal.  These episodes of downward spiral are typically triggered by infection and medications. These patients often have periods where they  return to normal or high function making some people think they are malingering or feigning illness. There is particular variation in cognition; well one day and confused and forgetful the next ..may appear as if doing on purpose which has infuriated and frustrated many a caregiver.  They also exhibit decreased attention, increased sleepiness, and alertness with patterns of normalcy interspersed  with decreased need for sleep, increased alertness and attentiveness. (like a yo-yo and in a step down progression each time rebounding less and less frequently back to normal).

Evolution of disease:

Prominent visual hallucinations, confusion, decreased concentration and alertness, sleep problems followed by apathy, (aphasia) speech impediments, swallowing trouble and paranoid delusion. initial treatment with Namenda makes cognition worse and worsens significantly with dopamine agonists and anticholinergic medications. Frequent falls are common often due to orhtostatic problems and fainting from autonomic dysfunction.

Subsequently, they become very weak developing frequent infections like pneumonia and other immunological infections leading to demise. by this time speech is usually very soft whisper almost inaudible or absent. This is the end stage phase


What are the risk factors?

  • older age >60
  • male gender
  • family history of PD or LBD
  • sleep disorder increases risk of  LBD five -fold
  • same risk factors as stroke (HTN, DM, Cholesterol) – linking it to a possible vascular etiology; interestingly not smoking just like in PD it seems to confer a positive benefit- however this does not mean you should take up smoking!
  • strokes
  • low education
  • attention deficit disorder


  • clinical
  • Dat scan shows low dopamine uptake
  • precision ct scan reveals abnormal uptake in the occipital and parietal lobes


  • This is symptomatic and supportive-treat dementia aggressively with medicines like  Exelon, Aricept or Razadyne.
  • use of antipsychotics like seroquel and clozaril
  • initiate speech therapy early on to improve not only swallowing but also speech and communication; consider feeding tube if necessary as well.
  • PT to prevent falling
  • monitor HTN, sugars
  • prevent infections as much as possible- constant vigilance, get vaccines if needed ahead of time
  • stay hydrated
  • treat with bp meds and orthostatic meds
  • most importantly try to establish a scheduled sleep pattern and use meds to help sleep.
  • discuss end of  life plans, hospice, dNr ( donot resucitate, etc)

@copyright 2017

all rights reserved Maria De Leon


dementia, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's treatment

Apathy: How to Combat: By Dr. De Leon

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all- the apathy of human beings.” Helen Keller

It has been a few weeks since I have written. Why? Pure apathy or is it indifference! In our vocabulary we tend to use the words apathy, indifference, and impassivity interchangeably. However, are they really the same thing and if so what does it mean for us in our living with Parkinson’s disease? Why do we feel this way? Is it normal? And is there anything we can do to combat this feelings of inertia that seem to take over us from time to time. if not addressed and treated properly can lead to severe disruption of life as well as to isolation and depression.

Thus, I have chosen this particular topic for discussion now that my inertia has passed away. This is also a subject which has generated much interest in our community as per the choice award topics of interest gather by the former PDF ( Parkinson’s Disease Foundation). perhaps before we spend countless hours and research money on the subject we need to define exactly what we mean. As I said earlier, most of us equate apathy to indifference but they are not the same thing particularly when it is defined in terms of a neurological illness.

Apathy and indifference both denote a lack of responsiveness and interest to things that may normally stimulate, excite or cause great emotions. apathy comes from the Greek root word pathos meaning emotion ( a=pathos) without feelings or emotions. this is a deep rooted neurological problem that involves the frontal lobe of the brain which deal with personality, and executive functions. Not only do you not have much feelings or interest but you DON’T CARE! in neurology as I stated before when we use the word apathy we are saying there is a neurological problem in the wiring of the brain that has gone awry. Usually more common than not when we as neurologists see this behavior outside of structural injuries in brain (e.g. head injury,  stroke, etc.) is primarily related to dementia.

What most of us in PD experience commonly however, is not apathy but indifference. The difference between the two is the personal behavior attached to this feeling.  People with true apathy simply don’t give a hoot about anything and don’t know they are apathetic. As opposed to being indifferent or having inertia or decrease in concern or emotions; we are completely aware of the problem we want to change it and don’t want to feel this way but we lack the fortitude to do anything about it. This is the state where I have found myself recently and I am sure many of you as well.  I want to go out and socialize, get showered, write, exercise but don’t have enough stamina to make myself do these things because the energy involved to achieve these tasks supersedes our reward. Remember that the basal ganglia is also a center for reward and pleasure and if you don’t have enough dopamine to think and do necessary activities to stay alive then you wont have any surplus to go in search of feel good activities. the reason I experienced this has been due to a decrease in my dopaminergic intake due to cardiac issues being evaluated. however, once I took my regular doses of medications my concern for things that are pleasurable like socializing and writing have returned.

So what does this mean for you? evaluate your feelings? is it you feeling like you don’t care and rather not invest energy in things you normally would love to do like read or go to movies or is it your loved one saying what is wrong with you? you don’t seem to care? and it makes no difference to you, you are content in your lack of participation. You could careless if you never brush your hair or shower again in your life.

Independent of which feeling is plaguing you most, I want you to know that there are treatments available for both.

Apathy vs. indifference?

Both require evaluation by your physician/neurologist/MDS


  • evaluate for new brain abnormalities i.e. stroke ( just because you have PD does not mean you can have other diseases), rule out thyroid disease and other metabolic abnormalities.
  • Get new or follow up mini-mental status exam (MSE) or  CogTest
  • neurobehavioral evaluation (needed in some cases)
  • Treatments:
  1. medications for dementia if present -e.g. Exelon (Rivastigimine) – only drug approved for PD dementia, but can also use  Namenda (memantine), Aricept (Donepezil), and Razadyne (galantamine). in my experience combination of Namenda plus Exelon or one of the other works best in retarding dementia particularly if introduced early on. thus I suggest yearly screening for this especially if had had PD >10 years because dementia risk increases with age and disease process. 40-50% develop PD patients develop dementia eventually.
  2. anti-narcoleptics- Provigill, Nuvigil ( non-addictive- focus on alertness, no blood monitoring required, do not interfere with other PD meds.
  3.  stimulants- a whole host which are amphetamines and amphetamine derivatives like Adderall, Ritalin. These are controlled substances and usually require closer monitoring some may even require blood monitoring.
  4. increase dopamine – but if dementia present this may make cognition worst


  • evaluate for depression
  • adjust PD medications (usually go up)
  • rule out thyroid disease/other metabolic issues
  • get neuropsych/behavioral evaluation if not sure if depression vs. dementia
  • Treatments
  1. if depression treat with antidepressants ( e.g. Zoloft, Lexapro, Effexor, Remeron, etc.)
  2. fatigue may also be a cause- treat with amantadine, and evaluate sleep.
  3. may also need sleeping meds.
  4. participation in activities like art, singing, exercise, dancing, biking etc. can increase natural dopamine, serotonin, and endorphins among other. these will in turn allow you break that indifference. So don’t give in to it get a buddy who can help out to over come these challenges but don’t forget to talk to physician first.

Now that you are an expert on the subject, you and your family can discuss more accurately with your physicians as to the cause of your lack of interest and participation in previous activities which brought you joy. Soon you will be on your way to finding your passion once more. Find one thing that bring you joy and pursue it …..

Carpe Diem!

parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's treatment

Preventing and Treating Psychosis Post Anesthesia in PD: By Dr. De Leon

I have heard of many patients being afraid to have procedures of any kind due to occurrence of psychosis and confusion reported by a number of Parkinson’s patients. This problem is not a myth unfortunately. Forty percent of Parkinson’s patients suffer psychosis commonly as disease advances which usually results in more hospitalizations, and increased procedures resulting in a greater need for anesthesia. Thus perpetuating the cycle. However, in my professional experience the majority of these episodes (psychosis post anesthesia) can be avoided by taking a proactive approach.
If surgery is required one must have evaluation of ones Parkinson’s symptoms for severity along with a complete evaluation of your medical regimen and a mini mental status exam prior to surgical procedure. The mini-mental status exam is KEY!!! The latter is particularly important in the face of long standing PD or advanced aged. This combination presents the highest risk for psychosis and delirium which is unfortunately often overlooked by most surgeons. I often would get consulted on other patients after the fact when a patient was psychotic and it never really was a surprised to me only to family and to rest of medical staff! This is true because if they would have bothered doing a full neurologic exam which included a mini mental status – they would have found cognitive deficits already present over 95% of the time prior to surgical procedures. In my patients I always stressed discussing with me prior to any and ALL procedures small or large especially if routine! This way I could have time to discuss with surgeons plan of action ahead of time and be involved in care. This is not always feasible in emergency cases but my patients and their families always knew to have their doctors put in a consult for me to manage their PD during their surgical procedures if hospitalized and receiving general anesthesia. One thing that everyone involved in care of Parkinson’s patients need to be aware of is that –Yes! PD patients represent a management challenge and need extra attention to have the best outcome.

Some of the common reasons people get psychotic with anesthesia:

  • Underlying dementia (often times undiagnosed- in my experience this is the number one reason)
  • Advancing age
  • Interaction of PD meds with anesthesia e.g. Mao inhibitors
  • Pain medication effect in light of PD meds and underlying dementia
  • Poor swallowing leading to pneumonia/ atelectasis
  • Decrease respiration /acid aspiration
  • Urine infections
  • Dehydration

Things to look at before any surgical procedure:

Preoperative continuation of levodopa

Aspiration prophylaxis Interaction of drugs with PD medications patients are taking

Duration of PD and systems disrupted –i.e. how is their cardiac function, their kidney function, their gastrointestinal function, their cognition, etc.

Surgical procedure – is it elective or emergent

Will hospitalization be required?

Type of anesthesia to be used-general vs. local

Will patient need to be bed bound – thus increasing DVT’s (clots) and also worsening PD symptoms like rigidity

First things we have to know about anesthesia:

1) Avoid halothane with levodopa if possible due to an increase in cardiac arrhythmia.

2) Use of Sympathomimetics  with Mao will increase BP- therefore need to suspend things like Azilect, and Eldepryl for up to a week before surgery. At same time recommend increasing other PD meds to compensate for that reduction so that you are the strongest prior to surgery.

3) Mao meds also inhibit metabolism of narcotics therefore narcotic effect can lasts longer in your system after surgery causing greater side effects- so may not want to resume Mao inhibitors right away after surgery if taking pain meds.

4) In advance PD sudden withdrawal of levodopa can be fatal at times causing neuroleptic syndrome. Therefore never recommend stopping this medication always look to take orally dissolvable Sinemet (levodopa/carbidopa) like Parcopa if have to be NPO (nothing by mouth).

5) Keep in mind that often times General anesthesia can relax muscles so much it can delay diagnosis of exacerbation by masking early symptoms.

6) PD patients who undergo general anesthesia have a tendency for increase chest infection due to ineffective cough mechanism and clearing of secretions and poor swallowing.

7) After general anesthesia these is increased nausea and vomiting meds often prescribed for this problem as well as those used with and during anesthesia can worsen PD symptoms.

My recommendations to prevent these common problems with general anesthesia:

Pre -operative care:

I am of the belief that patients should take medications up to the time of surgery by substituting things to bypass the GI system using oral disintegrating tabs such as Parcopa use dopamine agonist patches if necessary and discontinue Mao inhibitors- but increase dose by adding more dopamine after surgery to be able to deal with stress of body.

Don’t forget to evaluate for cognitive status and place on medications to protect many IV/IM/orally disintegrating meds and even patches ( Exelon, Abilify, Geodon, Zyprexa)

Take small sips of liquid if need be to get meds down to avoid exacerbation of symptoms.

If sedation is required Benadryl maybe be best solution because there is an IV form and helps with PD symptoms as well; works great for procedures of the eye.

Also ask for scopolamine patch – this decreases nausea and vomiting due to anesthesia.

Ask for reflux prophylaxis –such as Pepcid IV prior to surgery to avoid reflux and aspiration.

Peri- operative/intra-operative:

If at all possible get local anesthesia or nerve Block to avoid cognitive side effects as well as gi symptoms. Post- operative: Resumption of meds as soon as surgery over is very important. Because timing is so crucial medication schedule must be adhered to pre-intra, and post operatively. After surgery, broad time schedules of medication intake should be avoided completely! Staff MUST be instructed to stick to specific dosing times and not to deviate for more than 15 minutes (max) otherwise this can lead to erratic behavior and severe symptom breakthrough such as increased pain, depression, anxiety, confusion etc.

If unable to swallow post -surgery consider – nasogastric tube to give meds if needed if unable to get oral dissolvable or tolerate patch, etc.

Give water through feeding tube but also make sure getting fluids to prevent dehydration and getting IV antibiotics post -surgery.

Sometimes patients have difficulty voiding post operatively due to spasms of bladder- I recommend baclofen or macrodantin (nitrofurantuon).

If at all possible try to limit narcotics and use instead Tylenol #3, Toradol IV/PO/Vicodin only as needed. Trust me this works best if we follow all these steps are followed and all involved take a proactive role in the care of the PD patient. Of importance is also a temporary increase in PD medication doses during recovery/convalescing period.

Don’t forget to get ancillary consults like OT, PT, ST, and respiratory to provide breathing treatments and an incentive spirometer to prevent pneumonia. A team effort is the way to ensure a much less chance of having psychosis with anesthesia.
Don’t forget to include your neurologists/MDS for a best outcome and decrease post-surgery psychosis.