El Por qué de la Importancia de Nuestra Participación en los Estudios de Genética:Por Dra. De León

Cuando escuche la gran noticia de que se expandiría el estudio genético (LARGE-PD) gracias a la generosidad de la fundación de párkinson (PDF- Parkinson’s Disease Foundation) aquí dentro del país con los nuestros, me desborde de alegría. La ocasión de celebración es doble para mí pues hay varias personas en mi familia con problemas de desórdenes de movimiento (principalmente dystonia y temblores esenciales); pero solo a mi abuela y a mí se nos desarrolló el párkinson. La otra causa más importante para mí como neuróloga es poder al fin empezar a descubrir las diferencias que existen entre los diferentes grupos étnicos que padecen con esta enfermedad crónica y devastadora.

Con casi veinte años de experiencia trabajando con la misma, la pregunta de ¿porque unos no y otros si desarrollan el párkinson? se ha quedado en mi mente como a mucho de ustedes. Por lo tanto, conocer como las variantes genéticas en cada uno de nosotros afectan la progresión de la enfermedad nos permitirá a nosotros los neurólogos a poder dar un mejor cuidado clínico.   Además permitirá a los médicos poder ayudar a los pacientes y a sus familiares a tomar mejores decisiones sobre su futuro.  Precisamente, por esta razón he decidido unir mis esfuerzos junto al equipo del Dr. Ignacio Mata en la Universidad de Washington para que todos nosotros que vivimos con el párkinson del diario podamos beneficiarnos en un futuro no muy lejano.  

Pues además parece ser que entre nosotros los hispanos hay un riesgo doble comparado a otros de diferentes grupos étnicos de contraer esta enfermedad. Estoy segura que ustedes al igual que yo, teniendo ya historial de párkinson (en la familia), les gustaría saber exactamente el riego que llevan sus hijos. Aparte de esto, muchos de ustedes saben que el riesgo aumenta con la edad. Aquí en los Estados Unidos, el número de ancianos va cada día en aumento y dentro de este aumento nos encontramos nosotros los hispanos. Según el más reciente censo de la población de ancianos en este país, índico que a pesar de tener más enfermedades que otros grupos étnicos, los hispanos vivimos más largo tiempo (especialmente nosotras las mujeres). Por lo tanto debemos estar aún mejor preparados para tomar la decisión adecuada concerniente a nuestra salud.

Como especialista del párkinson  creo que la continuación de este estudio que lleva más de 15 años  bien podría ser la clave que pudiese aclarar el crucigrama de lo que representa el párkinson verdaderamente. Más bien como expusiera uno de mis pintores famosos favoritos; Van Gogh “¿cómo es que va uno a entender el verde sin antes entender el amarillo y el azul?”

Pero para que este proyecto pueda ser un éxito necesitamos la ayuda y participación de todos ustedes estimados amigos que tienen párkinson y son de origen hispano; porque hasta el día de hoy hay pocos estudios que tomen en cuenta nuestra cultura. El propósito es generar suficiente información y obtener datos que puedan replicar los añascos que se han observado en el estudio anterior de Large-PD. Al identificar genes comunes en la población de latinos aquí en el país entonces podremos tener una mejor manera de aportar a estudios y tratamientos nuevos dando principio a la medicina  personalizada.


all rights reserved by Maria De Leon MD

Does PET THERAPY Have a Role in Parkinson’s disease Care? By Maria De Leon

Aside from the fact that I have always had allergies to both cats and dogs I never really had much free time to devote to having a pet. I often noticed how people with pets seemed so happy always treating their mascots as part of the family but never fully understood this bond until recently.

My daughter has wanted a pet for years – one she could play and interact with. We have had our share of beta fish, turtles, rabbits, and even a pup for a short time. Unfortunately, both she and I are allergic to dogs so after several months of treating her contact dermatitis and being miserable with my allergies I decided to part ways with our cute pup which broke my heart and made me a very unpopular person in our home. Having to endure some wailing each time we drove by the vet’s office on our way home.

Having finally settled on notion of never becoming a pet owner again I gave in on my daughter’s birthday once more dreading flair up of my allergies. We adopted a tiny grey kitten which was only 4 pounds instantly reminding me of when my daughter was born weighing the exact same thing. It was love at first sight for all of us in the family but no one was more surprised than I to realize how much having this tiny little creature in my life not only lifted my spirits and amused me but his unconditional love has melted my heart. I can’t imagine not having him in our lives.

Although, it is the girl’s cat, I am the one that spends most time with him because I am home the most.

My biggest fear was that my allergies would worsen which they did initially but suddenly I realized that my allergies were acting up less each time which I found fascinating. In fact, it turn out that pets can actually lower risk of developing allergies and in fact may even strengthen our immune system – something I would be most happy to have in the midst of all my chronic illnesses.

The other benefit which I have discovered is the positive vibes and well-being feeling having my little one at home has created for not just me but all in the family. Life can be pretty stressful even more so when living with a chronic disease. The stresses can be felt and at times negatively impact those closest to the person who is sick. However, study show that children with pets had lower cortisol levels. Having lower stress is also important because PD patients can have anxiety as part of the spectrum of illness and struggle at times with blood pressure issues. Owning and caring for a pet (cat or dog) can also help decrease blood pressure.

Pets can also have a positive impact on our mental health particularly help combat depression so effective is this that many organizations have adopted pet therapy as an effective treatment for mental illnesses such as depression and loneliness.

Of course having someone else to lookout for gives you a sense of purpose and a reason to get up and move even when you don’t feel much like it. Plus, some have claimed that sleeping with your pet also helps to improve quality of sleep- a much needed thing in all of us with PD.

The one thing that I have found most fascinating is their intuition to know when something is off. My cat is as all cats’ plays and gets attention only when he needs it and wants it otherwise is off to himself somewhere but when I am not well he senses this somehow and does not leave my side day or night until I am better. Although, there is absolutely noting he can do to help having him physically standing watch is a most reassuring and comforting thing  – it is as if you could see your own guardian angel standing watch saying I am here , you are not alone, we will get through this together.

So yes, I am a firm believer that all of us with a chronic illness should incorporate some type of pet therapy in our lives even if it’s by visiting an animal shelter often to play with the strays there. The love and healing you will receiving would be immeasurable compare to the time you give. If you can adopt an animal do so but keep in mind your strengths and condition realistically – we don’t want the care to be a burden but rather a benefit.


@copyright 2019

All rights reserved by Maria De Leon MD

Treating Parkinson’s Pain without the use of Opioids- by Dr. De Leon

Pain is only relevant if it still hurts.” Ed Sheeran

I was reading an article, not long ago, regarding the epidemic of pain killers in women in the USA leading to this administrations recent policy changes in an attempt to curtail this problem. It got me thinking about pain as an initial presentation in neurological diseases such as in Parkinson’s disease. Like many other neurological illnesses, PD has a big pain component which varies from person to person. It is believe that 40-80 % of people who have PD have pain.

 The pain can occur at any stage of disease and can take many shades within the same individual at any given time. Pain in my experience is more frequent and more pronounced in younger patients as well as a common initial presentation of illness. However, because pain is subjective it is too often misunderstood and misdiagnosed by many physicians. 

 In my own practice it seemed that women with young onset PD had a higher rate of pain at presentation. Subsequently, because of misdiagnosis they were often the ones to be placed on opioids for chronic intractable pain. Because of the likelihood for women to be placed on opioids due to lack of concrete diagnosis we as physicians and patients alike must take a proactive approach to getting not just diagnosed earlier but starting treatment early.

Once opioid treatment is begun there is a potential increased risk of mortality for women compared to men. But also worsening of PD symptoms particularly cognition and gi symptoms causing a downward spiral. This is because women across the board not excluding PD have more chronic pain then men. I for one have chronic pain as one of the major impacting symptoms of my Parkinson’s disease which disrupts my day to day activities more than any other single symptom.

 In my two decades of treating Parkinson’s – I found that very rarely was there a need to use opioids (like hydrocodone, fentanyl, morphine, codeine,
etc.). However, if there ever was a time to use such methods as
in the case of an acute herniating disc common ibn PD patients. The prescription and intake of these pain medications should have a set finite amount of time. They are not meant to be taken long term where addiction is most likely to occur. The key is treating pain acutely at its source with morphine if necessary to prevent the brain from becoming sensitized remodel to require constant doses of high opioids to produce a desirable effect. Having personally experienced multiple types of pain from dystonia, to central and radicular pain as well as musculoskeletal pain, I can attest without a doubt that dopamine agents will treat and reverse the majority of pain syndromes without the need of opioids. The only time I ever required the use of an opioid like drug was during the acute phase of my herniated disc as well as post op ( again for a limited time only). Having surgery resolved the pain immediately as it does in case of an acute nerve entrapment. However for my central –non localized, intractable boring pain. Azilect was a life saver. In my experience the majority of cases of
pain in those living with PD, treating the motor PD symptoms adequately
typically relieves their typical shoulder or hip pain, musculoskeletal pain in
limbs as well as back and neck pain. Dystonic pain in neck responds well to Botox injections along with levodopa medication adjustment. Even so called entrapment nerves syndromes like carpal tunnel (hand
swelling and first 3 fingers going numb or tingling)
or ulnar nerve
entrapment (numbness and tingling in 4th and 5th digit) will often correct by us of massage therapy, anti-inflammatory drugs. But more importantly upping dose of levodopa to relieve dystonia and rigidity of muscles does far more to alleviate the problem. Same types of problems can occur in lower extremities causing a tarsal tunnel much less infrequent though.

The increased muscle stiffness can be so profound as to actually dislocate joints. Patients with PD often times have a shoulder dislocation even hip dislocation at times. So if you start having joint pain talk to your doctor ASAP a simple increase in dose or frequency of medications can resolve the issue as I has me many occasions. Thus, before you pursue any other treatment ensure that your PD medications are at their optimal level.

In cases, where dyskinesia’s have caused the pain by distorting curvature and musculature of axial muscles and even caused discs to herniate, the first order of business is treat the problem –STOP the dyskinesia’s either through medication or surgically (DBS ) or combination. Then you can begin to treat the pain by performing neck/back surgery if necessary and using prophylactic medications such as anticonvulsants-(e.g. Keppra, Topamax); anti -depressants in the tricyclic family such as Elavil, and Remeron or antidepressants in ssri and snri family- e.g. Cymbalta, Effexor. The use of centrally acting muscle relaxants like baclofen and dantrolene are also quite helpful. The use of topical anesthetics (e.g. Lidoderm patches) and topical anti-inflammatories also can be of benefit like using .

Thus, in my opinion as a former PD specialist, opioid addiction in our Parkinson’s community should not be something we need to contend with improving our life expectancy particularly for us women. If we follow the mantra that the majority of pain syndromes CAN and should be treated first and foremost by increasing and adjusting PD medications as a first step.

Make sure you speak with your physician if you are
having any of these issues.


Kam Katherine. (September
2017) “Opioid addiction: the gender Gap” medical editor- Neha Pathak,
WeBMD magazine. 69-71.

@Copyright 2019

all right reserved By maria L. De LeonMD