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.

  “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.

“Art is like chocolate for the brain” ~ G. Cohen

There is a new trend of adult coloring books popping up all over the place that are designed to stimulate the mind. These consist of intricate designs from abstract images such as the ones in the ART NOUVEAU DESIGNS coloring book to images of iconic monuments worldwide found in INSPIRED COLORING TRAVEL. Although the concept is good, I find these books extremely tedious and lacking in mind stimulating abilities for those that have neurological disease such as Parkinson’s, Parkinson’s dementia, or other Parkinson’s Plus syndrome in which cognitive abilities are compromised. These books promise ‘to relax and free the mind.’ Have you ever worked or cared for an agitated person who is losing ability to recognize an entire scene of a painting to focus only on the individual parts? This can only cause them to become more agitated. Try putting together a puzzle where the pieces have no connection to one another. This is virtually impossible. So why would you give these patients something they will not be able to enjoy? Plus, these coloring books are expensive.

1-You can achieve same mindless coloring in advanced dementia patients with dollar coloring books which have a variety of themes for every occasion making it fun! However, the purpose of these books and activities is not only to calm, and sooth the patient but rather stimulate their remaining intellect and preserve function for a longer period of time.Minions Jumbo Coloring Book

We want a variety of activities that will stimulate several areas of the brain at the same time such as frontal lobe tracking things and put things in sequence, parietal lobe matching shapes, and temporal lobe to trigger memories of objects being painted. Best to have larger images and space for coloring enabling patients to stay entertained and focus for longer periods of time. Having larger images also makes coloring easier to stay within the lines and gives a chance to express individuality by using different types of coloring materials like watercolors, markers, crayons, acrylic paints and colored pencils. Product DetailsProduct DetailsProduct Details

My grandmother who suffered from Parkinson’s disease for many years enjoyed these type of coloring books which not only entertained her but calmed her down. Plus, it was easy to share the coloring books with my daughter who would sit opposite her and color the adjacent page. They used all sorts of   materials for their wonderful creations including finger painting. One of their favorite methods to paint. Another one was to use scented colors which also help to stimulate the olfactory nerve.

2- Besides my favorite cheap coloring books which also have a number of activities like tic-tac-toe and word puzzles, I really like the Osborne Big Color by Numbers Book– I like because it has variety of designs, colors and shapes- some small and others larger within same book. These are reasonable and can be found at all large bookstores including amazon.

3- Another fun way of painting is paint famous work of arts by numbers – you can pick favorite artist or period or do a variety. Always pick larger canvases. Room for creativity as well because can use own proper brush stroke technique as well as paint colors to reflect own individual whimsy. Product Details

4 – I also like the Books Dream Big, Draw Bigger

5- For those who are dealing with advance Parkinson’s in their life or dealing with dementia, Draw, Doodle Design & Doodle Imagine, Draw. The last three books allow for both the caregivers/partners and Parkinson’s people themselves to become more engaged and interactive thus stimulating cognitive function in several aspects of brain because it asks to do tasks while drawing which requires recollection of objects, places and memory of shape of what is being asked to draw plus helps with coordination and fine motor skills. But, in reality all of these books/ painting crafts are perfect for any stage to keep the pathways and neuronal connections viable. Remember art is photo a gift many of us with PD have been given due to our illness as well as a side effect of medication so go ahead indulge.

 Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux: By Dr. De Leon

I love summer not just because my birthday highlights the beginning of the best season where the days are long and the possibilities seem endless. But, because I always seem to rejuvenate during this time of year. As I get ready for my first real trip of the summer after an exhausting year, it occurs to me that since I have developed PD it takes me longer to pack my medications than it does my actual clothes and toiletries.  We all know PD symptoms can vary with stress, weather conditions, and other variables like sleep. Therefore we have to be prepared for the not so good days particularly when far away from home and even more if out of the country.

Tips for Traveling: walt whitman travel

As I had described on a prior blog “Tips & Tricks: Traveling with Parkinson’s Disease” always carry with you a complete list of medications (over the counter, natural supplements as well as prn medications).

You should also have your doctor’s phone number handy along with a letter stating diagnosis and medications needed including name, dosages, and times to be taken. As a girl scout I guess my motto is always to be prepared which means making sure that ALL of your medications fit into a small carry-on luggage that you can keep with you at all times. In this carry-on keep an extra set of clothes, undergarments (this includes disposable undergarments…there are many to choose from recommend depend because great variety for both men and women), snacks, and water (which can be easily purchased once go pass security.

  • Especially when traveling by plane during busy season or to certain regions of the country such as some famous ski resort areas even in the summer, they have a tendency to be delayed which may result in luggage being misplaced during trip. In Aspen since it lies in a valley surrounded by mountains, the departure of flights is very much dependent on weather. This was one of the first times, I experience crew talking about weight of plane in to take off safely. This means that you may leave but not your luggage necessarily. Believe me, it is easier to change clothes than have to wash clothes in a hotel or worst in an airport bathroom. If possible carry sleep wear (best something silky which allows for greater mobility at night). I can’t sleep in regular clothes. But, if there is no room in luggage, do as I do travel with extra comfy clothes like pants with elastic band made of combination Lyocell and spandex (and some cotton) because these will allow you to move with ease, not wrinkle, and is odor absorbent as well as breathable. The last two qualities are extremely important since a lot of us with PD tend to perspire especially under duress.
  1.   When booking a trip always ask for wheelchair assistance even if you end up not using it. This will give you peace of mind especially if you happen to suddenly need one because meds have worn off unexpectedly. Having a wheelchair available comes in very handy if connecting flights happen to be in opposite ends of the airport or if luggage retrieval is several terminals away.
  2.  Don’t get in a hurry. Pace yourself. Give yourself extra time to get to destination (e.g. Airport or ship boarding)
  3. Don’t make changes to your medicine regime on the day of travel or while on vacation since you don’t know what kind of side affects you will experience.
  4. If you are going to get a cooling vest, as I am carrying one for me and my niece who has medical condition requiring skin to stay cool, Don’t wear it while going through security. Guess what this vest looks like on X-ray machines?  Something akin to wearing a bomb strapped to your chest is the appearance of those gel packs next to your body inside the vest. If you don’t want to cause a huge incident video- taped and posted all over the media take the vest off. Also best to bring a doctor’s note to avoid confiscation by the TSA. The gel and filling may make them uneasy as well.
  5.  Don’t be ashamed or proud to ask for early boarding. Don’t be afraid to let the crew know your condition in case you may need assistance with meds etc. during the flight or out to sea.
  6. Further, make sure to bring a back up to your cane. Do you know how many times my father left his at restaurants, hospitals, public bathrooms, etc.? It’s good to have a ready replacement.
  • Although your primary walking assistive device is not a cane but a quad cane or u- walker some places are not as easy to navigate like small narrow brick streets of New England or some European countries. In these cases a walking stick or cane may be an alternative option which will allow you to keep touring or enjoying your trip. In my case, my large umbrella always serves me as a walking assistive device when traveling. This way I am ready for inclement weather due to rain or bad terrain. However, the umbrella must be a sturdy to sustain your weight and also handle severe winds up to 55mph. This one device also helps to provide shade and keep you cool when outdoors. Here is one link you may find useful
  • If you depend on scooters for mobility look at place of destination to see if you can rent one or one is available to you which will make your traveling much easier. For instance, I have been told that in France, wheelchairs are now available to rent at local pharmacies. In Italy however, when I was there only 3 years ago, I found it extremely difficult to navigate at times as a person of disability. Any person using more than a cane would find little to no support in most places including big cities like Rome. Taking tours can be more than a challenge since most places are not handicap friendly (Made me appreciate the commodities and privileges we as Americans take for granted at times, even when cities are not as handicap friendly here in the States- they are superior to many European countries in which I have traveled). Wheelchairs are not easily available in a lot of countries.
  • While in Rome, I felt extremely bad for this one person on a motorized wheelchair and her daughter who were tour with us. Before they boarded, the daughter asked our guide if the place where we were going to was handicap friendly otherwise they would stay. The guide without missing a beat said, ” oh yes, we have elevators!” Needless to say, this was a large misrepresentation of the truth! As soon as we got to the gardens there was a large steep stairwell. I saw the disappointment and frustration in this family’s face. Seeing the anger the tour guide said:” don’t worry once inside there is an elevator! Turns out the elevator only went down two floors which did not even cover the entrance of the beautiful gardens …even myself could only see about a fourth maybe less of the spectacular scenery because the stairs were so steep and winding down forever; I was afraid I would be stuck at the bottom and unable to climb back-up since I was already experiencing extreme weakness.
  1. Make sure you do your research ahead of time and talk to other people that have traveled there before going.
  2. Wear sun protective clothing. We are predisposed to melanoma and UV rays can go through clothing especially bathing suits. Wear a sun protective hat and if you plan on being out in sun and beach may consider this link: Be aware that some medications like Azilect also make skin more sensitive to sun and if prolonged exposure can lead to rash.
  3. Also, remember that sitting for a long time in a plane can cause ankle swelling this is aside from the fact that some medications like NEUPRO, Azilect, Amantadine are known to increase leg swelling especially in women. Since the combination can lead to increase water retention it may be wise to get compression stockings to avoid DVT’s (clots) and improve blood flow. Look at the following link: Also talk to your doctor about diuretics (water pill) as a prescription if this is a severe problem for you.

Now that you have everything in order- you are set to go! Have a great trip & Happy Independence Day everyone!

“Life begins at the end of your comfort zone!”


all rights reserved by Maria De LeonMD

FDA Approves New Deep Brain Stimulation Device

Women With Parkinson's Disease

From the FoxFeed Blog , 

FDA Approves New Deep Brain Stimulation Device
Posted by Maggie McGuire, June 16, 2015

The U.S. Food and Drug Administration (FDA) announced Friday that it had approved another deep brain stimulation (DBS) device for treatment of Parkinson’s disease and essential tremor.
The Brio Neurostimulation System from St. Jude Medical works in a similar way as the available DBS device: Medtronic’s Activa Deep Brain Stimulation Therapy System, approved in 1997 for tremor and in 2002 for Parkinson’s disease.
In DBS, a neurosurgeon implants a thin electrode into the brain, targeting motor and potentially other circuits that are not functioning properly. Small electrical pulses from a device similar to a cardiac pacemaker modulate the signals that cause some of the Parkinson’s motor symptoms. While a powerful treatment for many people living with Parkinson’s, this therapy does not treat all symptoms and isn’t suitable for all patients.
The Brio…

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