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Curious Case of Maria De Leon

“Art is the “objectification of feeling” art is often hard to describe…one usually fumbles for words to express with the right words what we see….
But it isn’t hard at all to FEEL art, to look at images upon a canvas and sense the power, the anger, the love, and even the despair that inspired the work of arts….”Suzanne k. Langer 

 

I have not written much lately and there is a curious reason for this ..reminded me of Curious Case of Benjamin Button movie starring Brad Pitt. I thought I would share my musings with you and see what you guys think. As you may know, I have been a long time proponent of art therapy as an alternative treatment for Parkinson’s but more important than this for years as a neuroscientist I have discussed the notion of  creativity being somehow related to “brain pathology.”

In my Parkinson’s Diva  book I devoted a whole chapter to art therapy as a second chance (if you will) given to us by a Higher being (GOD)  as way to flourish and bring forth beauty.  Many have read the big debate regarding artistic expressions in PD. The question remains whether is a result of medications or an inherent part of PD. But perhaps there is a third option. Perhaps the artistic expression occurs as a result of chemical imbalances activating parts of the brain we usually don’t rely on for functioning.17039279_1050824945024177_4069118663995079579_o

First of all we have to look at the way we define “normal” (brain functioning). What is Normal? and who came up with this idea of setting specific parameters? could it be that what we term normal is actually just average? (after all statistically speaking normal is simply a term for the average in a bell curve)

I have devoted my adult life to the study of neurological behaviors and to understanding the great complexities of our brains.  After nearly 30 years, I must say that I understand its inner functioning even less than I did when I first began. I am not really surprised by this being that I believe that a superior God with infinite power and knowledge created us to His image with a 100 billion neurons with a trillion connections – are we so arrogant to pretend we understand how it works? We might have a better understanding I think of how space works -infinite less complex and smaller than our brains.

For years, i have treated patients with number of neurological illnesses such as epilepsy, dementia, Parkinson’s, bipolar disease etc. all of whom had expressed time and time again their desire to be untreated or under-treated in order to be able to feel themselves particularly to experience the creative flow weather it be writing, painting sculpting, etc.

I have always been an admirer of great artists and writers like Van Gogh, Picasso, Hemingway  many of whom interestingly have had severe neurological illnesses. some of whom created their masterpieces while being hospitalized in mental institutions. Scientists have been able to cause creativity in the form of art by stimulating certain parts of the brain while many individuals have suddenly gained artistic knowledge where once none existed after a traumatic brain injury. While some Alzheimer patients have become great sculptors and painters as their disease advanced.

Around the time I began to experience my first symptoms of Parkinson’s, I felt a sudden irresistible urge to write poetry, after years of not reading or writing poetry, which used to be one of my favorite past times as a young woman. The outpouring cleansed my soul and brought not only peace by putting into words my fears, frustrations etc. but also allow me to move forward with my life after the PD and cancer diagnosis by putting closure on things that were painful to me.

The creativity over the last decade of me dealing with PD increased exponentially on its own from increased interest in writing (poetry and other forms), art appreciation in all manner in my life from my teaching style, to fashion and decor, to developing an actual interest in painting (something I never even had a minimal desire in doing). I also noted that taking levodopa fueled that desired and increased an out-pour of artistic expression almost in a manic fashion.

However, the interesting and curious thing about this whole ordeal is that over the last several weeks as i have somehow found an equilibrium in my life with both alternative and traditional therapies feeling nearly “normal” being able to do things which I had not been able to carry out in years like tending house daily- doing laundry, cooking, cleaning, running with daughter, teaching etc. without feeling tired, weak, stiff, shaky and in pain; I have noted a sudden decrease (almost lacking completely) in creativity, in desire to write, paint, or express myself in an artistic fashion. It has been hard to come up with ideas for any of my projects which most nowadays depend on some sort of creative flow. i don’t want to write among other things.29542834_2022349857778686_1246047400348006539_n

Although, I am thrilled to be feeling this great physically – (hope it last) I am feeling a loss of that newly found creativity which was new,  foreign, and exciting especially for someone who always had a scientific mind.

For years, I have studied brain pathology and neurological diseases trying to infer what is normal but perhaps i have been wrong of what normal really is or rather what makes genius.  perhaps the phrase mad genius is not so far off…

One must be a bit off center to be able to express oneself in an artistic fashion what ever medium they choose. so should we be medicating all these people into mediocrity/normalcy?

Perhaps the greatest gift Parkinson’s disease had given me and many of us is that chance to be  closer to the mind of God; after all He is the greatest artist and creator as evidence by nature.  Plus, having lived with PD for more than a decade i can certainly agree with Edward de Bono who stated that ‘creativity involves breaking out of established patterns in order to look at things in a different way!” – Boy,  none more than us who live with PD have learned to break out of patterns/routines in our lives to look and find unique solutions to everyday way of living.

The question remains will i stay feeling healthy and physically ‘normal’ without much interest or desire for creative expression or will my creativity return should my Pd symptoms take hold of me once more? Having tasted the sweet feeling of being almost manic is easy to understand why no one would ever feel the desire to return to a state of  equilibrium especially if  you lose an integral part of your being – that of being an artist, a writer, a poet, etc.

@copyright 2018

all rights reserved by Maria De Leon

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Tips for Treating Swallowing Difficulties in Parkinson’s: By Dr. De Leon

Tips for Treating Swallowing Difficulties in Parkinson’s: By Dr. De Leon.

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DAT Scan: Can it Really Tell Me I have PD? : By Dr. De Leon

Dat Scan (Ioflupane I 23 injection also known as phenyltropane) is a radio pharmaceutical agent injected into the veins of a patient known as SPECT nuclear medicine test. When this test was approved in was under the premise that it will be an added tool in the armamentarium of the neurologists/ movement disorder specialist to help decipher difficult cases.

So, the answer to the question…can it tell you have PD? – NO!

The test can’t confirm you have PD! – it can only tell if there is abnormality in the dopamine system which can include any and all of the Parkinson’s plus syndromes including Parkinson’s disease. If abnormal it means there is a problem in the dopamine system period.

Furthermore, like any test is user dependent. My husband who is a neuroradiologist in a small community who has extensive experience in reading PETs for lots of disease and specializes in the brain would not give an accurate reading of a DATSCAN as his colleagues up the road in Houston at the medical center who do hundreds of them.  Since the only PET scans of the brain that have been FDA approved are for diagnosis of dementia- there are standard things that the radiologists look for by guidelines set by the Academy of Radiology who also mandate general training in reading of these tests across the border to all practicing radiologist to maintain their credentials. However, no such mandate has been given in the reading in SPECT or DAT scans  for diagnosis of PD and only those that are in academic centers who have seen hundreds of these studies are actually the only ones qualified to give an expert opinion as to the “quantitative” measure of the uptake in the brain.

If you have received a diagnosis of PD from an expert specialists in movement disorders and are improving or responding to dopamine therapy there is no reason or gain by getting a Dat scan. Likewise, if someone suspects of Parkinsonism due to PSP, MSA etc. no added benefit will be obtained by getting this scan, you might in fact be wasting your money ($2500 to $5000) and time.

This test was only intended to be used as another diagnostic tool to help decipher between dopamine and non dopamine diseases which can mimic PD. Now it is over used unfortunately for the wrong reasons. The FDA only intended to be used to differentiate between essential tremors and PD. In my humble professional opinion, Dat scans are not required for treatment or diagnosis and only place for a Dat scan is in academics for studies or in rare cases where a procedure like DBS or Pallidotomy is being considered and physician is not sure if treating essential tremors vs. PD; which if this is the case, I would be reluctant to have a brain surgical procedure when clinical diagnosis is in question! This invariable will lead to poor outcome… many other treatments can be employed until diagnosis is certain.

Another thing because the trace used to measure dopamine activity is radioactive and expensive is not ordered till the day or night before the test. Thus, if you decide to cancel at the last minute because not feeling well you are causing the facility to lose a lot of money and some facilities may even charge you for it. If you have history of thyroid disease or take thyroid replacement you may not be able to do the test.

So short and long …Doing a DAT SCAN CAN NOT TELL ANYONE THEY HAVE PD – do not be fooled by those that claim otherwise!!! Parkinson’s unfortunately still remains primarily a clinical diagnosis and ONLY way to diagnosed with 100% certainty is brain biopsy or at autopsy. However, there is a caveat, with more studies being done in academic centers understanding and standardization of DAT scan reading is increasing slowly among those involved in the field. at the same time we are slowly gaining knowledge of PD and its varying presentations. Therefore, it is conceivable that in the near future, we might be able to combine the knowledge of two to predict and detect patients who will develop PD.

According to a new study, Danna Jennings, MD, Clinical Research Director at the Institute for Neurodegenerative Disorders in New Haven, and colleagues have attempted to do just this via the Parkinson Associated Risk Syndrome (PARS) study to identify a large-scale cohort of individuals at risk for Parkinson’s disease using olfactory testing and DAT imaging. What they have found is that although no one had PD symptoms at baseline despite abnormal DAT scans or reduced ability to smell ; 46% of individuals with loss of sense of smell combined with a deficit on the DAT scan have shown to develop clinical features of Parkinson’s disease within four years.

“The knowledge that comes from this study will have important implications for the recruitment of individuals for future neuroprotective trials,” stated Dr. Anthony Lang, Director of the Movement Disorders Clinic at Toronto Western Hospital. Remember, in a previous blog “Thinking Outside the Brain for a Parkinson’s Cure,” I commented that often trials fail or are doomed to fail from the start when it comes to finding neuroprotective agents because we often don’t even have the right diagnosis. If we are able to successfully predict who will develop PD from these early markers: 1) we can institute treatment a lot earlier in hopes of retarding or slowing progression and 2) trials may have a greater chance of success than previously; because we may no longer have to wait until a patient’s disease evolves to the motor stage causing obvious manifestations of Parkinson’s disease in order to include in “early –stage” trials which by definition is no longer early since by then these patients have lost at least 50% of their dopamine producing neurons.

Source: Olfactory Testing and DAT Imaging May Lead to Early Detection of Parkinson’s disease. Neurology Reviews. 2014 22(8):18-21.

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

 

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GLOSSARY/DICCIONARIO: Parkinson’s Word Terminology to be aquinted with ( Vocabulario de terminologias relacionado con el Parkinson) By Dr. De Leon

GLOSSARY/DICCIONARIO:  Parkinson's Word Terminology to be aquinted with ( Vocabulario de terminologias relacionado con el Parkinson) By Dr. De Leon

Bradykenesia – Greek term that means “slow movement” – it is one of the cardinal features of PD. Termino Griego que significa “movimientos lentos”- uno de los síntomas principales del Parkinson.

Cogwheel Rigidity -tension in a muscle that gives way in little jerks when it is passively stretched -one of the cardinal features of PD.
Tensión en los músculos que se suelta o relaja en pequeños jalones cuando los músculos son estirados en forma pasiva- uno de los principales sintomas del Parkinson.

Dyskenesia– Greek for difficulty in movement, impairment in the ability to control movements resulting in fragmented or jerky movements.
Termino Griego que significa dificultad de movimientos, incapacidad en el control de los movimientos que resulta en movimientos fragmentados y jalados.
Dose -related side effects( 3types):
Efectos relacionados con la dosis ( 3 tipos):
1. Peak dose dyskenesia:
Occur 20 to 90 minutes after taking medications (almost 75% of patients have them after 6 years of treatment), in young patients because of high doses symptoms may occur before end of first year!
Esto ocurre de20 a 90 minutos después de tomar la dopamina ( 75% de los pacientes experimentan esto después de 6 años de tratamiento), en pacientes jóvenes a causa de dosis grandes de medicamentos, los síntomas pueden ocurrir antes del fin del primer año.

2. End -of – dose wearing off phenomena-effect of medication does not last from dose to dose. This is more common in patients with long term therapy- correlated to low plasma concentrations of L-dopa and some may be due to interference of protein diet in absorption of medication.
El efecto del medicamento no suele a durar entre dosis y dosis. Esto sucede mas común en pacientes que han estado con tratamiento por largo tiempo- este efecto esta relacionado con concentraciones bajas del medicamento l-Dopa en el plasma y algunas causas pueden ser contribuidas al mal absorbimiento por causa de la proteína en la dieta.

3. Biphasic dose response-this is a phenomena where some patients experience dyskenesias of brief duration shortly after taking medication( especially first am dose) which resolves only to be followed by onset of spasms and severe dystonia especially in lower extremities 1 to 2 hours later.
Este es el fenómeno en el cual algunos pacientes experimentan las dyskenisias de breve duración breve tiempo después de tomar el medicamento( especialmente la primer dosis de la mañana) pero estos mismos suelen a experimentar espasmos y dystonia severas especialmente en las piernas una dos horas después.

Dose -unrelated side effects :
Efectos no relacionados con la dosis de medicina

1. On-off phenomena
El fenómeno de “prende y apaga”
Occurs in 50% of patients that have been treated for 5 years or longer. These episodes consists of periods of unpredictable severe akinesia, hypotonia, and apprehension( anxiety) of very rapid onset and termination, which last from 30 minutes to few hours and is unrelieved by further L-dopa dosing.
Esto ocurre en el 50% que han recibido tratamiento por mas de 5 años o mas. Estos episodios consisten de periodos que son impredecibles con severa hipotonia, akinesia, y ansiedad, empieza rápido y termina igualmente por lo general 30 minutos a algunas horas y no re alivia o compone al tomar mas medicina de L-Dopa.

Dystonia-involuntary sustained contraction of muscles with increase muscle tone and resulting in abnormal posturing of muscles affected.
Contracciones involuntarias de los músculos que perduran y tienen tono hiperactivo que resulta en posiciones anormales en los músculos afectados.

Hypophonia– soft Voice/ speech resulting from lack of coordination of vocal coordination.
Voz o habla de manera callada a consecuencia de falta de coordinación de las cuerdas vocals.

Hypomimia– loss or impairment of facial expression.
Perdida o dificultades para expresar movimientos faciales.

Micrographia -abnormally small, cramped handwriting and/or the progression to continually small handwriting.
Escritura anormalmente pequeña o con espasmos o calambres y también constituye la tendencia al progreso continuo de la escritura hacia un nivel mas pequeño y espasmódico.

Motor symptoms– the 4 main cardinal symptoms ( slow movements, stiffness, loss of balance, and rest tremors) are collectively referred to as motor symptoms which make up ” Parkinsonism or the parkinsonian syndrome- these are caused by loss of dopamine in the basal ganglia.
Síntomas motores – los 4 síntomas básicos ( lentitud de movimientos, perdida de balance, rigidez muscular, y temblores) esto colectivamente son conocidos como los síntomas motores que forman parte del cuadro clínico del “parkinsonismo o el síndrome del Parkinson”-estos son el resultado de la perdida de la dopamina en el área del basal ganglia.

Non- motor symptoms– non dopamine symptoms
Síntomas no- motores – síntomas producidos por células no producentes de dopamina.
Like RLS, constipation, loss of smell, hypotension, depression, anxiety, sexual dysfunction, Hallucinations, bladder disorders, and psychosis.
Algunos de estos síntomas son constipación, hipotensión,depresión, ansiedad, halucinaciones,psicosis, problemas de la vejiga ( como incontinencia, frequencia), perdida de olfato, desordenes de sueño.

Postural instability-loss of balance that causes someone to feel unsteady due to loss of postural reflexes – also a cardinal feature of PD.
Instabilidad de postura- perdida de balance que produce desequilibrio a causa de perdida de los reflejos de postura- este también es uno de los síntomas principales del Parkinson.

Rest tremors– an involuntary coarse rhythmic tremor or quivering that consists of 3-5 hertz usually confined to the upper limbs of hands and forearms, present when arms are (relaxed) stretched at rest and disappear with activity or limbs become active. – this is one of the 4 main cardinal features of PD-also described as “pill rolling.”
Temblores rítmicos y crudos e involuntarios que consisten de 3-5hertz. Por lo general estos temblores son mas comunes en las extremidades próximas como las manos…son presentes solo cuando los brazos son relajados inactivos pero desaparecen completamente al instante que las extremidades son movidas voluntariamente. Este es uno de los síntomas principales del Parkinson.

Rigidity– inflexibility or stiffness due to increase muscle tone.
Inflexibilidad o rigidez en el la consistencia de los músculos o en el tono (fuerza) muscular.

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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 http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com