Friday, September 6, 2013

 
De Novo Artistic Talents in Parkinson's Disease By Dr. De Leon
 
 
            “Creativity involves breaking out of established patterns in order to look at things in a different way!” -Edward de Bono


The biggest challenged we all face in living with this illness is the disconnection that occurs gradually between our of minds and our bodies!

How do you survive? Much less thrive in a world designed for the abled not the disabled?  When each one of us still has dreams, ambitions, goals, families to raise, jobs and careers to pursue?

The answer lies perhaps in the brains ability to cope and form new connections from one neuron to another bypassing old defective ones! This is accomplished by the gift many have discovered after starting treatment with L-Dopa and dopamine agonists.

This is what makes our Journey with Parkinson's disease so very interesting.  When we are tested to our limits , we must find a way to rise above our circumstances despite our not so cooperative or disabled bodies to live and be happy!

We have all heard the old adage;   "necessity is the mother of invention or innovation!" When the roads between the neurons are obstructed or no longer functioning to full "speed" or "capacity" we feel the need to find another means of  arriving at the same destination in a place where we feel valued, unique and useful! After all being able to express ourselves in a singular fashion is what differentiates us from the rest of the animal world.

So, thank goodness that for a great number of us that have PD the principal treatment with dopamine replacement has created a much debated phenomenon- artistic expression.

Recently, there has been a great deal of talk and interest in this new phenomenon known as "artistic expressivity" in Parkinson patients.  There is a great debate among experts as to the origin because it is not entirely clear if this is de novo expression  or simply a surge of dormant innate talent. Although there are several theories one thing is for sure -all the increase in artistic phenomenology appears to be related to the intake of dopamine both L-Dopa and dopamine agonists. There have been reports of de novo sculptures and painters who previously had no experience or training prior to onset of disease as well as reports of increase desire to create and express themselves through whichever means possible whether that be through music, writing, humor or painting.

One theory proposes that this occurs due to a  sudden release from social inhibitions due to the effect of the dopamine or because dopamine is not only involved in motor control but in "pleasure and reward center" being able to achieve a new goal and have a new purpose may have its own unique drive!

Others opine that simply adding the medication allows them to become more artistically sensitive because they experience a greater desire to create when the dosage of dopamine increases.

In my profession, I always had to be logical and concise in my diagnosis and decision making but the inherent drive to always look at the bigger picture and take a holistic approach to life and medicine was always present. I have always loved color and admired great works of art even if I never considered myself as being "artistic." However, interestingly about the time I began to develop Parkinson symptoms I noticed I became much more bolder in my color schemes both in my home and office. At the time, I was building a new office which I helped to design. Turned out to be not just colorful, but uniquely bold. It was designed around my Parkinson patient's and other patients needs in mind but not lacking any flair of personality and air of museum!  Needless to say doctors offices around here have never been the same ever since. I started a trend- Before I sold my office, we even considered highlighting it in architects digest. But, since I was so ill all the décor was taken off before we could take pictures! My patients and drug reps and others used to comment on the décor and were always surprised to find out it was all my design. They even started suggesting that I have a separate desk for interior designing consultations...
So for me, I think it brings out the innate talents to the surface that somehow you once were to afraid to express!

No matter the reason  for the increase in artistic expressivity, I agree with the experts,  that the therapeutic value is immeasurable. This form of helping the brain cope with substantial losses has already been explored in other neurologic diseases like (vascular) dementias and strokes. Similarly, this type of "art therapy'  could hold great benefit to Parkinson patients helping them circumnavigate the motor problems or deficits. Thanks to the external stimuli the once impaired motor skills ( e.g. not able to button shirt or feed oneself) consumed by tremors, or rigidity or severe bradykenesia can become normal or almost normal when engaging in this type of therapy -like painting or sculpting. Allowing patients to perform fine motor skills not otherwise able to achieve in their normal activities. But the greatest benefit derived from allowing one to express itself artistically is the psychological and physiological well being that brings forth to all patients with Parkinson. Furthermore, being able to create makes people happy and provides hope while temporarily allowing one to forget about one's own disabilities.

Because I have seen the value of "art therapy" in other neurological disease, I firmly believe that opening oneself to this type of expression is not only psychologically beneficial. But, I firmly believe this may be the key to longevity and perhaps slowing down the disease process by the building of new connections - recruiting unused brain to take over the function of those parts no longer functioning well! This is just my theory- but for years we thought NOTHING could be done for STROKE patients until we discovered the power of rehab and although the infarcted (dead) brain usually does not recover a great deal of recovery goes on physically on an individual basis. We already know exercise seems to help the Parkinson patient- I think of art therapy and artistic expression as mental exercise!

So, go ahead don't be shy start a new painting,  music or writing class or whatever else makes you happy and allows you to use your fine motor skills! Engage your kids, grandkids...the more the merrier!

Remember, being Happy It's all a matter of perspective......
Is the glass half empty or half full?... a dear sweet friend of mine, who also had Parkinson's disease, .... thought me- WHO CARES?!!! just BE HAPPY YOU HAVE A GLASS WITH SOMETHING IN IT!!!!
As doctor Gene Cohen would say;  "art is like chocolate for the brain" and if chocolate has similar characteristics to dopamine-the essential deficient chemical in Parkinson patients then by all means let us continue expressing ourselves artistically to continue battling this chronic illness avoiding spiritual, mental and moral decay and find a greater quality of living  for us and our loved ones!
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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson's Action Network). You can learn more about her work at www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson's disease at www.pdf.org or at <a href="http://www.wemove.org">www.wemove.org</a>
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Monday, September 2, 2013

The power of Research in the Palm of YOUR Hands- Inspired by YOU - By Dr. De Leon: "Neurologists are a CRAZY bunch! Crazy enough ...

The power of Research in the Palm of YOUR Hands- Inspired by YOU - By Dr. De Leon:



"Neurologists are a CRAZY bunch! Crazy enough ...
: "Neurologists are a CRAZY bunch! Crazy enough to believe that if they can find a cure for ONE neurodegenerative disease.....they ...

The power of Research in the Palm of your hands- Inspired by you! by Dr. De Leon





"Neurologists are a CRAZY bunch! Crazy enough to believe that if they can find a cure for ONE neurodegenerative disease.....they can find a cure for ALL!" ( Perception)

Well, I guess I always knew I was a little off my rocker.....so glad to be part of the dreamers.....it was the love of neuroscience and neurology that propelled me to study medicine and become a neurologist at a time when going into NEUROLOGY was EVEN LESS popular than it is now.....

The last neurology breakthrough had not occurred for at least 30 years previously and the BRAIN was EVEN more of an enigma than it is today. Neurology was tongue and cheeked referred to as "diagnose and adios!" by my classmates. I was often poked fun of by my friends and was considered a bit of a fool for going into such an obscure field when there had been no matches in neurology in the previous year and there were none in the year following my class.....

But, once a dreamer always a dreamer......

While completing my undergraduate degree at Penn, I had had a glimpse of what it could be ....the great power of the mind, the resilience of the human spirit, and the capacity with which individuals with severe traumatic brain injuries and devastating neurologic abnormalities were able to cope and persevere.....I knew they deserved better and I would do my best to help in what ever way I could advance that knowledge and understanding of the brain.... During those years, I often volunteered as a control subject for various neurological and psychological studies... little did I know then that some day I, too, would become a Parkinson's patient in need of the miracles of science to help my life become better and depend on those volunteers like myself to find answers and hopefully someday a cure!

As a resident, I volunteered in a few other studies that were testing specific medications for migraines ....and nothing is more rewarding than to see those studies completed and drugs come to market and even though for instance in one study I was given a higher dose which was not approved because not  statistically significantly better than a lower dose it helped me in my practice years later. For instance, if someone was prescribed that medication and took a larger dose because headache would not respond .....the fact that I had been on it for months without problems and others I knew had been on it without issues I was not so alarmed ...although warned dose not FDA approved at such doses!

Interestingly, as a medical student I designed a visual study to test a particular hypothesis in schizophrenics......and now 20 years later a very similar design is being tested for other dopamine systems like Parkinson's. Parkinson Plus and Huntington's Disease and the preliminary findings will be displayed in a poster at WCP 2013 in MONTREAL- very exciting since I am also one of the test subjects in this..... perhaps this will be one way we might be able to early diagnose PD or differentiate early on between the various dopamine illnesses! So, Stay tuned!!!! Data will be presented by Dr. Mya Schiess and her colleagues from UT Houston Medical Center.

So, as you can see ever since my undergraduate years I have participated in many research projects as a subject and have conducted many of my own....both in the basic science arena but primarily as a physician and now as a patient as well helping to understand the role of sleep and sleep disorders in PD as well as other studies like one mentioned above.

I can not underscore the significance that research both in the basic science and in the clinical arena represent for present and future generations of patients afflicted with devastating neurodegenerative diseases like Parkinson's and Alzheimer's to name a couple.

Thanks to the countless volunteers over the years who have given of themselves unselfishly along with the work of visionary neuroscientists we were able to have a boom in knowledge and medical treatment that began in the 90's known as the DECADE of the BRAIN. But, still we find that even though we have come so far our knowledge is still far inferior and lacking in many ways and the cure to Parkinson's and many other devastating neurodegenerative diseases yet alludes us.....but I have complete confidence that some day WE WILL UNLOCK the MYSTERIES within ......

But, in order to do this we all need to work together in unison for a common goal- the overall well being of Human kind and ease of suffering of all involved in such devastating neurodegenerative diseases.

So, how can you help?
......by playing a part in Parkinson's research.

You can participate in research as a patient or as a control.......

You maybe asking yourself the following questions:
I want to participate in a trial?
But, I am not sure if I can or if I qualify or which one to choose since there are so many? How do I know what trial is best for me?
First of all we have to remember that by definition a clinical TRIAL is an EXPERIMENT in which the outcome (answer) is not known!!!!
Therefore, if your sole purpose for participation is your individual well being you may be in for a world of heart break and disappointment!
Research should be approached as way of “paying it forward’!
Your sacrifice will be rewarded in the health of others to come and it is also a way of giving thanks to those that came before us and have sacrificed so much so that we may have the treatments we currently enjoy……

There are different trials and experiments with different outcomes and it would serve you to be well versed in order to make best informed decision FOR YOURSELF giving YOUR PRESENT CIRCUMSTANCES!!! ( This is crucial to remember because circumstances change and disease burden also changes usually increasing over time making some trials more difficult to enter into or be excluded from or included).

Always take into account ALL of your circumstances social, financial, medical before making a commitment or a decision that could potentially negatively impact your life
(because results are not known unless doing a phase 4 study trial in which results are already known for most part but need more specific information).
Here are the different types of trials:

Phase I...
first time trying new drug that has been extensively studied in animals or laboratory and hold promise. These are small 15-100 patients
Objectives:
Establish side effects/ tolerability
Observing patient response
Observe drug effect on patients disease

Phase 2
Establishing efficacy of drug compared to placebo - usually small

Phase 3
Confirmation of safety and efficacy-very large studies&gt; 1,000

FDA approval

Phase 4
Post marketing to gather further information , optimal use, treatment-risks and benefits
There are several types of trials:

Prevention trials
Screening trials
Diagnostic trials
Treatment trials
Quality of life trials
Compassionate use trials

The way to maximize success and a positive outcome for you is to consider these things before you engage in any trial: Look at what you are trying to get out of it ....is it purely to advance science or are you also hoping to gain something....if you are hoping to gain something ...are the expectations realistic? Are they in sink with the goals of the study? Never participate to please your doctor...that will only lead to heart break when results don't yield what you hope for....
because for us physicians and clinicians even when a study is negative we gleam and still are able to learn lots from what went wrong....but even though it may not help YOU in your present situation....BUT MOST DEFINETELY HELP THOSE in FUTURE GENERATIONS!!!!

Always consider your physical limitations and capabilities and also that of those who care for you.....Also, keep in mind to ALWAYS ask the researcher if the participation in this particular trial will preclude you from getting other surgeries or treatments!!! MOST IMPORTANT- YOUR WELL BEING comes FIRST!

But, Always look upon your participation in a trial as a rare privilege and honor to change the course of science and human nature!

If you follow these simple guidelines you should not only get benefit, and contribute to science BUT also have FUN!!!

Don't forget research is a TWO-WAY street OPEN communication is VITAL.....let your clinician know your concerns and also what interest and issues you have to better fit a study that suits your needs.....
With your help and participation and the growing scientific knowledge inspired by you, I believe that WE can FIND a CURE for Parkinson's Disease.....Until then you can join me in my quest and be content in being called dreamers....for it is the dreamers with an exorbitant imagination that have the POWER to change the world! Even if we are but a CRAZY BUNCH!

Join us at PDF's Parkinson's Advocate in Research (PAIR) program to bring about better treatments and quality of life to all of us who live with Parkinson's Disease.
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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson's Action Network). You can learn more about her work at www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson's disease at  <a href="http://www.pdf.org">www.pdf.org</a>  or at <a href="http://www.wemove.org">www.wemove.org</a>
for more information about research trials available for Parkinsons go to www.foxtrialfinder.org

http://grants.nih.gov/grants/guide/notice-files/NOT-NS-13-035.html     a place where you may go to put your input as to what is needed in research to find cure for PD