chronic illness, dopamine and parkinsons, fluctuations in parkinsons, parkinson's disease

Anxiety in PD: by Dr. De Leon

cation

anti-anxiety pills, I would take them but I am afraid …”

Anxiety also thought of as excessive worrying is something that I have had lots of experience in dealing with as a physician and caregiver but until my medications were reduced after last hospitalization, I myself had never felt this way. I am not a fan.

As it turns out nearly 20% of people with pd experience these symptoms during the life of the disease. Fortunately, this is one of those symptoms which is extremely treatable since we have a slew of med. unfortunately, it is often misdiagnosed or overlooked causing severe mental and physical anguish.

We have recognized anxiety  as a non-motor symptom of PD not simply a reaction to having disease. As we learn more about Parkinson’s we realize that anxiety can be a presenting symptom and even precede motor signs and symptoms by many years.

There are several presentations of anxiety. The most common is  general anxiety where a person becomes overly concerned with things around him or her like when is the next doctor appointment, or lunch meeting. You may feel like passing out, have gloom and doom feelings, shortness of breath, heart palpitations, sweating, dizziness, chest pain, numbness and tingling or pins and needles. They may even cause spontaneous crying, vomiting, or difficulty swallowing ..tightness in throat.

I must say that this is the form most often encountered by me in my patients. however, i now know that I failed at times to treat the underlying cause. I recall a sweet older patient who began having ‘on’ and ‘off’ periods would over dose on Sinemet each time she had an ‘off’ period due to the severe anxiety only to aggravate her dyskenisias. Not really understanding that what she needed was more dopa medication more evenly spread out to stop the ‘off and assuming this was  unrelated to her dopamine levels I prescribed Ativan ( anti-anxiety medication) but quickly she began popping these pills like candy in some ways making her anxiety worse by severely compromising her respiration.  Until I had this similar problem several months ago, I did not fully comprehend the severity of the problem, the incredibly overwhelming feeling of lack of control and feeling of being consumed by this emotion as well. I understand how people that take drugs are constantly after a next “fix.” You simply want to feel normal or at least that feeling of lack of control, and complete incapacitating nervousness to cease.

Since, I was placed on a much lower medication dosage than I was used to, the lower doses were not lasting as I was used to without feeling gaps. Now, I was experiencing on and off symptoms and found myself completely absorbed in my day to simply waiting for the next dose. This was completely foreign to me in the decade I have had pd I have never had to set my watch by my meds. Because I am well controlled and have several long acting meds, I don’t feel the gaps and certainly don’t go into panic mode if I am a bit late taking medicine or forget. I do however, get stiff, slower and stat having pain or visual problems if I forget completely. Yet, here I was like a drug addict counting hours and constantly looking at the clock to see if it was time to take my next pill. No way to live!

So, I decided to deal with the side effects of my meds from a different angle and stop this madness which lasted less than two weeks but felt like an eternity. I restarted my medications at previous doses and voila! No more anxiety. I could breath again normally and actually be productive once more. This of course, thought me a huge lesson, realizing that in my practice as well as many patients out there that complain of anxiety or difficulty breathing are actually undermedicated. They don’t need anti anxiety meds they simply need higher doses of dopa that is continuous and not fluctuating.

This is because the symptoms are extensive and can mimic many other illnesses including, thyroid disease, low blood sugar, heart attack, and asthma doctors may want to do other tests to rule out these more serious and potentially lethal diseases. However, the best way to properly diagnose and get the right treatment is to maintain a diary.

  • When symptoms start?
  • Are they Daily?
  • How long they last?
  • Do they occur multiple times a day ?
  • Are they following or preceding  medication intake? Food in take ?
  • Activity bring on?

Treatments:

Once source correctly identified a new regimen can be implemented. In most cases of anxiety in people with Parkinson’s are due to under medication in my experience – thus the solution is to increase levels of L- dopa either more frequent dosing, larger doses or both.

However, once all other possible causes are ruled out and not improving with higher dopa levels, anti -anxiety meds in the benzodiazepine class are implemented (e.g. Ativan or klonopin).  Also Ssri’s  anti-depressants like lexapro, Zoloft, or SnRI’s such as Effexor, Cymbalta, or Remeron can be prescribed. Even behavioral therapy might be considered if symptoms are not subsiding along with  antipsychotics preferably those like  Seroquel, Clozaril maybe given without worsening PD;  perhaps  even the new drug Nuplazid could be instituted although no data available at present time.

Don’t suffer in silence get help if you are having anxiety particularly if altering your life style or causing severe physical and emotional impediments. fortunately, I am back to myself not looking at watch every 5 minutes waiting to take next dose…so that I could regain some temporary sanity.

More info:

http://www.pdf.org/anxiety

 

chronic illness, dopamine and parkinsons, fluctuations in parkinsons, medications in Parkinson's, parkinson's disease

Dealing with off Periods: HOT Topic @WPC 2016 -By Dr. De Leon

“The purpose of art is washing the dust of daily life off our souls.”~ Pablo Picasso

 

One of the hot topics to be covered next week at world Parkinson’s congress 2016 at Portland Oregon is that of dealing with motor fluctuations. I am very sad that I won’t be able to meet so many of you for the first time as well as looking forward to seeing again many of you whom I have a personal friendship thanks to PD. However, if you look closely, you might find my spirit permeating throughout portions of the congress since I have been involved in several committees especially those relating to the Spanish subcommittees.

In the meantime, as a member of the science subcommittee of the WPC, I will try to discuss with you before and after some of the topics of interest for this meeting.

Those of you who have lived with PD in your lives know from experience that treating the disease in its early stages is rather simple, once of course diagnosis has been ascertained and assuming that you tolerate medications. This is because at that stage, the brain is naive and exquisitely sensitive to replacement of dopamine in any form or dose. The reason being that our brains are still producing it (dopamine ~50-80%) just needs an extra kick start. So in essence a little goes a long way. Even a single dose of an agonist, MAO Inhibitor (e.g. Azilect), and especially levodopa can last for several days at a time. But, as the disease advances there is greater loss of dopamine producing neurons requiring greater amount of replacement and support from other chemicals in the brain. These other neurochemicals in turn begin to also become affected as dopamine levels decline in an attempt to maintain chemical equilibrium within the brain.

Unfortunately, many of us as well as many physicians believe erroneously that if a little is good more is BETTER. This could not be further from the truth. Yes, in some ways we do need increase amounts to function properly especially cognitively but if we flood our system with dopamine (levodopa) akin to trying to maintain our body’s energy levels with pure sugar- it will eventually CRASH. Yes, dopamine intake like sugar consumption will act quickly and give needed energy instantaneously. However, physically and mentally you will eventually burn out because our body’s needs cannot be sustained on sugars alone. Our systems need fats and proteins to provide us with necessary nutrients and energy storage to use for periods of intense activity, and stress. Our brains also need other neurochemicals like serotonin, acetylcholine, and glutamate among others to thrive.

Therefore, it becomes a matter of art and experience as much as it is a science to begin dealing and attempting to rectify anyone person’s off periods and fluctuations. Of course we must keep in mind that the challenge is greater for those treating disease since every one of us is unique, as Parkinson’s disease is not a homogeneous entity.

Nevertheless, there are certain general rules which apply. I will delineated here for your review.

First, in order to decrease off times and prolong effect of medication it is best to employ a polypharmacy approach- this is about one of the few times I would agree with this as a physician. Typically, in medicine the fewer drugs the better patients perform in regards to side effects, compliance, and complications. However, in order to maintain equilibrium in our brain this is essential from the start. I would definitely recommend introducing a small dose of levodopa at beginning of diagnosis.

Reasons: it helps confirm diagnosis with positive response. I firmly believe it can be neuroprotective according to some early studies on the subject.

Yet, I would not leave alone for long period of time ( >6 months) before adding another class and continue to add various classes as disease advances because the combination serves to potentiate effect of  each medication simultaneously. Furthermore, this strategy also ensures a decrease risk of developing dyskenesias because although you are technically increasing levels of levodopa you are not saturating one single receptor (dopamine) so there will be no need for up regulation (more receptors created). The latter results in faster wearing off because you are reaching threshold sooner and overwhelming system each time.it is sort of like trying to treat gastric reflux, you eat more frequent meals to avoid the burning but each time you eat you are stimulating the production of acid which only makes the problem worst.

As disease advances, it will become necessary to add and increase doses of levodopa but still can decrease incidence of fluctuations by adding medications like Comtan, Tasmar to levodopa and/ or different formulations of levodopa such as extended release (CR), intermediate release ( Rytary), fast absorption (Parcopa), Stalevo (sinemet +comtan). Plus, you Do Not have to stay with only one (single) formulation; in my experience as physician and patient it is actually best if you have varying formulations. Soon hope to have a couple of more formulations of levodopa like inhaled formulation.

Second, remember that all medications like agonist and amantadine can have an effect for up to 10 years then become less efficacious but after a withdrawal period of 6 months to a-year they can again be of service and function at maximum capacity (sometimes people wear off because medications have been stretched further than usually efficacious). Also just because you did not tolerate a particular formulation due to nausea, other Gi problems, or even low blood pressure they can still be reintroduced because our bodies change as we age. Sometimes we need our blood pressures (bp) to be lower because although low hood pressure is a more common effect a lot of people with PD, such as myself) have severe hypertension with levodopa and agonists.

Third, one of the considerations for treatment of off times is of course DBS- deep brain stimulation, but also adding medications such as amantadine, switching or adding a long acting dopamine agonist like Neupro patch, adding Zonegran, or Apomorphine sq, soon will have oral disentigrating formulation of apomorphine which is currently in trials at various institutes including BCM. Addition of Comtan or Tasmar may also be indicated at this time as well as change to various formulations (of release) of levodopa if not done already.

Fourth, Keep diary of times and dosages of medication, as well as when off periods occur. Important to note if this occurs at Peak dose or end of dose? Is it predictable or unpredictable?

  • If peak dose – may need to lower dose (say from 25/100 to ½ tab of 25/100) and perhaps take more frequently (usually at lower doses)
  • If end of dose require medication intake more frequently this can be accomplished by adding extended formulations such as CR, and/or Stalevo or taking more frequently

Finally, remember not to overlook simple and crucial factors for having fluctuations and off periods such as diet intake of protein (IT ONLY REALLY MATTERS IN ADVANCED DISEASE). This does not mean stop all protein intake – you will regret. Means take it an hour before meds or two after. However, the biggest problem with diet is now so much what we eat but when we eat. Small frequent meals are better and never later than 6 pm to improve digestion because the REAL culprit more often than not is constipation and poor motility and malabsorption. So making sure you are voiding every day or at most every other day is imperative for good health of gi-tract and good consistent absorption of medications. This includes exercise, drink lots of water and eat lots of fruit along with probiotics.

Best of luck for those traveling to Portland. Stay happy and healthy.Image result for yo-yo

 

chronic illness, dopamine and parkinsons, parkinson's disease, Parkinson's Health

The Importance of Dopamine in Creative Expression: By Dr. De Leon

“We of the craft are all crazy. Some affected by gaiety others by melancholy but all are more or less touched.” ~Lord Byron

As you all know, I have had some major health issues setbacks lately which have curtailed my involvement in various activities including my bi-monthly blog writings. Main reason for this has been lack of creativity along with a lack of mental drive to get anything done. Of course having blood pressures fluctuate in a drop of a hat from 95/60 laying down to 200/95 sitting and even higher standing or mild activity such as dressing or bathing causing blindness a couple of times along with a TIA (mini stroke) did not help much either, which scared the living daylights out of me being a neurologist and all.

As I laid around mindlessly watching T.V. trying to stay calm and avoid any major excitement (difficult in my life at times it seems like), I caught some scenes of the movie -“A Beautiful Mind” perhaps many of you will remember this movie which won many awards for Russell Crowe’s portrayal of a brilliant mathematician (John Forbes Nash Jr.) who struggled with lifelong mental illness in the form of schizophrenia.

Following a stream of semi-consciousness, I began thinking about my own patients with mental illness over the years including those with Parkinson’s disease and the apparent connection of great intelligence, creativity and mental disease.  From ancient times of the Greeks important people like Aristotle thought that creativity came from the gods and the muses (the 9 daughters of Zeus). These were the mythical personifications of the arts and sciences.Image result for pietà michelangelo

One thing is clear to me and to many others who have studied this subject is the direct correlation of dopamine and intelligence. After all we know that this is the chemical responsible for learning and reward system. A study by psychologist J. Phillippe Rushton discovered that creativity was highly correlated with a high intelligence and traits of abnormal personality – schizotypal. Those who had a condition with known dopamine involvement particularly those with excess dopamine such as bipolar or schizophrenia (like Nash) were found in literature to be extremely brilliant and creative individuals. In my experience this has also been true, all of whom hated being on “treatment” which suppressed their dopamine because it ‘stifled’ their creativity and their originality causing them more often than not to go off their meds time and time again. We have example after example of great literary minds and artist who had significant neurological deficits who were quite prolific despite their disease. I believe, that this is greatly in part to the excess of dopamine circulating in their brains. People like Earnest Hemingway, Michelangelo, Virginia Wolf, Sylvia Plath, even Robin Williams.The Old Man and the Sea

Pondering about the subject of creativity it dawn on me that since I had stopped intake of my Rytary (Levodopa replacement), I had lost my spunk, mental acuity, including writing creativity, and worst again stopped bring interested in reading my favorite novels which everyone in my family noticed…this I believe is due to fact that reading a novel with complex story line requires a great deal of concentration and recollection which use up large amounts of dopamine.

Incidentally, as an aside reading is what I needed the most to regulate my blood pressure because studies have shown that simply emerging oneself in a favorite fictional book especially if already read and enjoyed can quiet the heart rate and lower blood pressure several points within a few minutes- so take out those favorite fictional novels out to Keep your brain and heart healthy!

However, since I began to feel the effect of lack of dopamine in my body after more than a week without it, I took my first dose again last night and behold I woke up with a brain full of ideas and ready to tackle the world once more, read, write and be creative. ( I won’t be going off my levodopa anytime soon again) Confirming that dopamine is the key substance needed to thrive in life and be creative. So in reality, this question of artistic expression in Parkinson is truly a simple one. Parkinson’s appears to be responsible for our new talents indirectly just as those with frontal lobe dementia due to excess of dopamine either by design of disease itself as in the case of FTD or by external supplementation in PD. Perhaps some of us have already been gifted with latent artistic talents that have been dormant for years unexpressed due to insufficient stimulation of our own muse. This would explain why people who undergo DBS no longer have the same creative expression as seen before the procedure because by design the operation is meant to reduce amounts of external dopamine required so people no longer have that boost to surpass the threshold into the creative realm.

Since a study of more than one million people in Sweden found a direct correlation between creative occupations and mental illnesses. This may be an area for further development as a way of doing vocational rehab for those of us with Parkinson’s disease who were forced to abandon our previous occupations. Something to ponder. As I continue to regain my own mental stability –recalling the day I first took levodopa, as a day when everything came completely into complete mental focus.

This weekend I will be relaxing with some dark chocolate curled up to a good book, maybe even enjoy some poetry!

 

Sources:

https://en.m.wikipedia.org/wiki/Creativity_and_mental_illness

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4041074/

 

 

dopamine and parkinsons, medications in Parkinson's, parkinson's awareness month, parkinson's disease, Parkinson's Health, Parkinson's symptoms

Breathing problems & PD: Dr. De Leon

 

“The

Trick

Is

To

Keep

Breathing ”

…because as long we are breathing we can start again!

a friend asked if I could talk about nocturnal breathing problems with PD. I will try to discuss the causes and treatments here.

As a trained Parkinson’s Doctor, I am still amazed by the enormity of symptoms related to PD which have a significant and possible deleterious effect on people’s qualities of life…many of which I was familiar with and many more which I have discovered as a consequence of living with PD myself.

One of the newly discovered symptoms is asthma…which I have developed since my diagnosis of Parkinson’s. We know from the literature that asthmatic patients have a higher risk of getting PD which could point and support theories of  PD being an autoimmune disease or having a viral trigger. However, the idea of PD or the medications used for its treatment triggering asthma remains to be proven. Yet, within the Parkinson’s support groups there has been many a talk about new onset of asthma after their diagnosis. First, I would not be surprised if this were true because some of the dopamine agonists have been linked to lung fibrosis and pleural thickening of the lungs- this syndrome was described as L-dopa respiratory dysfunction syndrome. This however was found to be more common in those with Parkinson’s plus diagnosis – with MSA ( multisystem atrophy) leading the list. Plus, Pergolide (Permax) an older dopamine agonist was removed from USA market in 2009 due to severe respiratory problems which resulted in fatalities.  The main cause of fatalities was valvular problems of the heart. A similar drug known as cabergolide ( Dis) also causes severe lung fibrosis, asthma and similarly causes heart problems by affecting the valves. However, since this is used only for  pituitary tumors and not PD remains available.

mirapex ( pramipexole) and to a bigger extent the Extended release compound can cause symptoms of wheezing, coughing, chest pain, phlem, shortness of breath (sob) with minimal excertion and swelling. I myself when I was prescribed mirapex ER experienced severe dyspnea ( trouble breathing ) and a cough- which is when I was diagnosed with chronic bronchitis. However, even after I stopped the medication my sob persisted eventually being diagnosed with asthma. I first I attributed this problem ( sob) to my thyroid being off – which is important to rule out as cause of sob especially if fatigued and wheight changes. Then I thought it could be the fact that I had gotten radiation for my cancer but X-rays showed no scarring or abnormalities but my breathing test confined to be abnormal and consistent with asthma. I was treated with inhalers and I am well controlled; yet interestingly the last time I visited my pulmologist, he said my breathing test, which he does routinely, were normal except for the fact that my tests appeared as if I had not put normal effort and lungs were not fully extended. I had taken my medicines but had not fully kicked in. so no matter  how much I blew  air or tried to push air out, my lungs felt stiff and rigid. But once medicine kicked in – lungs were pliable (normally expanding). Which means that PD can cause sob simply by having disease and stiffness of the breathing muscles- hence as symptoms advance patients start feeling more anxious and short of bread when medications start to fluctuate especially if off’s are sudden and unpredictable.

Abnormal breathing function is important to address as soon as possible for several reasons:

  1. it increases risk of chest infection – if not able to cough and clear lungs
  2. can increase lung infections by creating stagnation and shallow breathing – a condition called atelectasis
  3. Voice is more raspy, husky and lower tone if have poor air way and decrease lung capacity making people feel even more isolated because they are not going to be heard well.

plus since stiffness and rigidity tends to increase with stress and cold thus we need to practice techniques of relaxation and practice staying warm.

At night, people may have breathing problems for a number of reasons:

  1.  Wearing off
  2. gastric reflux
  3. obstructive sleep apnea

The bottom line yes both medications and poorly controlled Parkinson’s can cause difficulty breathing. Therefore, it is imperative to talk to your doctor as soon as possible to rule out other medical problems like thyroid, heart disease, sleep apnea, gastric acid reflux and asthma a which may or may not be caused by PD meds.

discuss your concerns with your physician and practice breathing exercises and relaxation techniques.

one breathing exercise – repeat 4 times- start standing, sitting or lying down ( better if standing ) lift arms up and do below

i) take a deep breath through your nose, pushing your stomach down

ii) then release air out slowly as you bring your arms down to your side

conversely – you can just relax shoulders then do the other two.

 

 

 

 

chronic illness, dbs treatment for tremors, disability in PD, dopamine and parkinsons, parkinson's disease, Parkinson's Health, Parkinson's symptoms

When Is a Tremor a Sign of Parkinson’s Disease?: By Dr. De Leon

Are you often asked by others, if you are nervous or cold?

Do you frequently hide your hands in your pockets when you walk to avoid stares from onlookers ? When you are out in public  do feel all eyes are on you and makes you shake more? So you stick your hand(s) in your pocket as fast as you can? Sometimes do you feel the urge to just sit on top of your hands until they go numb just to stop them from shaking for a minute or two?

If you do any of these things- it maybe your brain telling you something is not quite right! The problem can be something as simple as drinking too much caffeine (but usually will also feel tired and  have a fast heart rate) to as difficult as having a neurological disease affecting the cerebellum caused by alcoholism or poor nutrition.

The first step in finding out the problem is getting to a neurologist preferably a movement disorder specialist.  He or she can tell if the tremor is metabolic due to thyroid problems or neurological in origin. May sometimes require a few blood test and even an MRI of the Brain when other symptoms are present to confirm there are no other underlying causes.

The key in diagnosis is in the characteristic of the tremor at hand. Typically neurodegenerative  diseases like stroke, MS, PD tend to start on one side and remain unilateral for a time. While tremors due to metabolic issues and benign essential tremors (ET) are usually bilateral (present on both sides). Although, in ET these can have a more severe dominant side.

However, when at the tremors are at rest, this could be a sign or one of the initial symptoms of Parkinson’s disease (PD), a chronic progressive neurologic disorder caused by the deficiency of a chemical called dopamine. PD tremors present typically in the hands. Usually it manifests itself while at rest in the thumbs; but any of the fingers can shake resembling a rapid tap as if sending a Morse code message. This tremor is often more noticeable to others when sitting or walking.  It can sometimes less frequently present in the feet with an involuntary rhythmic toe movement, most frequently noticed at night while trying to fall asleep. Unlike the more common tremor known as essential tremor (ET) which occur primarily with action; by definition, a rest tremor disappears as soon as a deliberate movement or motion is made such as reaching for a cup. The rest tremor is also usually accompanied by decrease in arm swing in the  opposite arm- opposite arm usually stiffer/ tighter. sometimes only way some patients have noticed a decrease in arm swing is by  decrease ability to keep time in a Rolex watch – since they are self winding with gait and arm movement.

Another important characteristic to look at is penmanship. Handwriting is significantly affected with both types of tremors which can be equally frustrating for different reasons and can lead to illegible handwriting in individuals suffering from both types of tremor. As you know, the characteristic features of those with PD are small, tight and progressively diminutive hand writing (micrographia) rather than shaky. Both types of tremors can worsen with stress, lack of sleep, and caffeine intake. According to Dr. Okun, National Medical director for the National Parkinson’s  Foundation, evaluating a sample handwriting helped identify early PD in over 97% of the cases. 

Along with tremors patients with PD are stiff, thus have trouble performing normal activities (i.e. bathing and dressing) due to lack of mobility. They often complain of shoulder pain caused by stiffness in the joint. Another important finding is an inherent slowness when performing any type of movement (e.g. walking, eating, and opening doors and jars). Further, Parkinson’s patients have difficulty with gait and balance leading to frequent falls. Other symptoms accompanying tremors include loss of smell, visual deficits, fatigue, pain, sleep and mood disorders along with bowel and bladder difficulties. Sometimes the latter findings may precede the tremor itself by up to 10 years.

People with ET typically have problems with shaving, putting on make up, drinking out of a cup etc. These individuals usually present in their later years unless there is a family history which tends to be anticipatory in nature. Some of them may be heavy drinkers due to self medication confounding etiology of tremor. (Alcohol alleviates these types of tremors; however I do not recommended as the treatment of choice). This means that if grandma had ET at 80, children will have at least 10 years earlier and so on. Eventually gene will die out with each generation. Interestingly persons with essential tremors especially those who are older at presentation tend to have increased hearing loss. On the upside of things these individuals have great longevity. They too may experience tremors of voice, and trunk as well as legs making them unsteady to walk and in cases where tremors start young there is an increased risk of developing PD in later years.

If you or a loved one have any of these characteristic features especially if there is a family history of tremors or Parkinson’s disease, then you maybe one of the nearly 10 or  1.5 million people living with essential tremors or  PD respectably in the USA. Although at present there is no known cure for either disease and we arte not certain of the cause, there are many efficacious therapies for both including medications such as levodopa- the Gold standard of treatment for PD. Also surgeries like deep brain stimulation (DBS) can be of great benefit to either disease and thus far is the only treatment available able to stop tremors 100%.

So, if you or a loved one got some tremors after a well shaken chocolate martini (preferably), seek immediate care from a movement disorder specialist. Early treatment is associated with an increased quality of life and decreased disability particularly for PD.

Go ahead & shake it like there is no tomorrow!

For more information-

Www.pdf.org  PDF Helpline -1800-457-6676 Www.essentialtremor.org

 

 

 

battling stigma in PD, chronic illness, dopamine and parkinsons, medications in Parkinson's, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's treatment, parkinsons dementia, parkinsons disease treatments, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

Tips to dealing with Apathy : by Dr. De Leon

Tips to dealing with Apathy : by Dr. De Leon.

alzheimers, dementia, dopamine and parkinsons, parkinson's disease, Parkinson's Health, parkinsons treatments, parkinsons y tratamientos

Tips to dealing with Apathy : by Dr. De Leon

Scientists announced today that they have discovered a cure for apathy. However, they claim that no one has shown the slightest interest in it.” ~ George Carlin

I hear the word apathy tossed around all over the place from different places and people who use this term loosely to imply “lack of interest,” or ‘deep depression.’

However, as a neurologist the word apathy has not only a very special meaning but it also carries with it a specific diagnosis.

So, what does apathy really mean. Apathy as described by the Webster dictionary as  “a state of perfunctoriness.” I love that word.  It is a state of complete and total indifference in all realms of our being, emotional, spiritual, and social. People who suffer from apathy are completely and utterly devoid of concern, emotions, and feelings. Not because they don’t want to but because they are incapable of caring due to disconnect of fronto-cortical pathways.

Therefore, the term “apathy”  in neurology is always a harbinger of  brain illness particularly organic etiologies such as head injury, strokes, tumors, schizophrenia (although the latter usually considered a mental illness -I maintain it is an organic neurological disease because of involvement of dopamine- in this case too much) and of course the number one cause and almost synonymous with term of apathy is dementia – (e.g. Alzheimer’s, Parkinson’s, vascular, Lewy body, fronto temporal, etc.)

Therefore, giving someone a diagnosis of apathy in of itself is a poor prognosis which implies typically a rapid cognitive decline.

Having said this, one must always identify the cause and try to treat it as best as possible and prevent further cognitive decline.

Medications employed in the treatment of apathy:

1) [of course are] medications used to treat dementia – i.e the acetylcholinesterase inhibitors like Exelon (Rivastigmine), Aricept (Donezepil), Razadyne (Galantimine), and Namenda (Memantine) an NMDA inhibitor. Several of these compounds have extended release doses and come either in patch or liquid as well or both.

Other medications include:

2) Dopamine replacement– no better feel good drug than dopamine especially if deficiency is what is causing the apathy but it is not always as easy as that in dementia patients particularly those who have dementia of Parkinson’s disease or other dementias associated with parkinsonism because the addition of dopamine will increase visual hallucinations and other hallucinations and worsen confusion. therefore, this has to be measured in scale of risk and benefits but usually in the majority of cases in PD associated apathy combined with other medications like antichlolinerasterase and antipsychotics.

3) Stimulants like Provigil (Modafinil)/ Nuvigil – used in the treatment of Narcolepsy but also for hypersomnolance or increased sleepiness.  I prefer  this class as first line of treatment over amphetamines after dopamine replacement.  In my practice, I  had a moderate  to great success with them.  Other stimulants include amphetamine derivatives such as those employed in the treatment of attention deficit disorder (Methylphenidate-e.g. Concerta, Ritalin; Aderall; Straterra).

4) Antipsychotics are also a good source to combat apathy but best if use atypical drugs like Clozaril or Seroquel because of decrease potential for extrapyramidal side effects like tardive (late onset) dyskinesias and parkinsonism. This is especially crucial if already dealing with apathy related to Parkinson’s or Parkinson’s plus syndrome. We don’t want to make motor symptoms worse resulting in freezing and falls or increase dyskenesias.

5) Anti -depressantsSsri’s/SNri’s -E.g. Zoloft, Lexapro, Effexor, Cymbalta, etc.

6) ECT– electro convulsive therapy when all else fails -it works tremendously well despite all of the bad the media has given it based on past history and  portrayal of patient abuse in movies like One Flew Over the Cuckoo’s Nest. Currently, there are several state of the art centers in the country which provide these much needed services which can help patients  have a higher quality of life than the would otherwise -one may be near you. The alternative is earlier institutionalization.

As always early recognition of apathy is Key to improved quality of life by securing proper diagnosis followed by prolonged watchful supervision and treatment by a team of experts which include Neurologist, Neuropsychologist, counselors, social workers, therapist and loved ones to help with financial issues of caring for a chronically ill patient as well as help prolong nursing home admittance for as long as possible.

dopamine and parkinsons, fluctuations in parkinsons, medications in Parkinson's, parkinson's disease, Parkinson's Health, Parkinson's tratamientos, Parkinson's treatment, Parkinsons disease

Wearing off it’s hard to do! By Dr. De Leon

Wearing off it’s hard to do! By Dr. De Leon.

dopamine and parkinsons, fluctuations in parkinsons, Parkinson's Health, Parkinson's treatment, Parkinsons disease, side effects

Wearing off it’s hard to do! By Dr. De Leon

  “He stopped loving me in the thick of my loving him.

    He was finished but I was not.

 I felt like I had been stopped in the middle of an orgasm.” ~ Stopped by Carmen  R. Rutlen

When I was practicing I used to have an intellectual grasp of  the motor fluctuations ; yet never fully understood until I got PD as well. Cocaine being so similar in structure to dopamine, it binds at same receptor. Thus, I could imagine and understand how the euphoric initial response one gets with time would diminish therefore needing to escalate dose in order to achieve same response. In my training, I  was past the days where doctors as part of their learning of medicine experimented with compounds they were to use in order to better understand their effects so had to go on theory. Never did I dream that I would one day become a walking pharmacy and where my knowledge of pharmacotherapy would be put to the test repeatedly.

I often talked to my patients about the feeling of being ‘on’..and how long the effect of dopa lasted. However, I used to think perhaps due to my naïveté that patients could only feel the change as they advanced in disease. But, in actuality one of the tall tale signs that you do have a dopaminergic disorder is quick and exaggerated initial response to levodopa.  Several of my patients stated they could not tell any difference with levodopa or when it was in their system. This usually was a clear  sign we were dealing with atypical causes of Parkinsonism.

As I am sure those of you who have Parkinson’s disease can attest to the significant mental rush you achieved when you first started levodopa. I could tell exactly when it kicked in and when it wore off suddenly, the first time I took Sinemet (levodopa/carbidopa). I despised the sudden feeling of unable to focus and feeling spent. Some of you have agreed with me of experiencing same feeling independent of any motor changes. When we first took dopamine,  our minds felt “on,” more focused, alive- like you could conquer the world and felt a bit euphoric not unlike the sensation we all have felt when we were first in love. No wonder and not at all coincidentally, dopamine is the “feel good” chemical released when we are in love! Dopamine is released when we see our loved one looking back at us, or just think about the love of our lives makes our brains light up like a Christmas tree.

But, just as in life and relationships maintaining that constant state of  happiness, giddiness, and feeling high is impossible to do. Now, I truly understand why cocaine is so addictive. We all love the feeling of being in love. When dopamine wears ‘off’ suddenly is like experiencing an emotional and physical heart break over and over..

Some may say it feels like living you hanging in the midst of an orgasm. If we never give ourselves time to heal we will go down a dark path of depression building an emotional scab that bleeds at the slightest touch. When we lose our love, we feel hopeless, anxious,nervous, unable to sleep, or sleep too much, listless, tearful, aloof,  and experience physical and emotional aching. So are the feelings when we experience levodopa withdrawal.

In order to avoid these feelings what should you do?

One thing you don’t do is chase after that person or in this case keep adding more and more dopamine…only lead to more hurt, withdrawals and serious complications. We find support from others which may not provide as good of a feeling but will help to stabilize you and regain strength.

In order to avoid repeated break -ups with your medication and being a slave to it…a combination regimen is advised- you would never let one man/ woman rule your world right?  Neither should you do the same with PD meds.  to take a page from Mambo # 5 song  by Lou Bega, a little bit of  (dopa agonist) and a little bit of  (levodopa) is best way to go to keep you and happy and balanced …

In my  experience in years of dealing with PD from all aspects, a combination of the following drugs dopa agonists, with NMDA receptors medicines like amantadine, Mao – inhibitors, and compt inhibitors along with levo- dopa is the best way to keep PD stable  for the long run. Sprinkle of ssri’s ( Zoloft,lexapro), tricyclics ( eleavil, remeron), or SNri’s ( Effexor) on top is the icing to the cake.

With age comes wisdom, so they say! As our Parkinson’s  advances, it is ever so crucial to learn how to fall in love (using our dopamine) without losing ourselves in the process.