El cambio de papeles- Dra. De Leon

Al continuar la campaña de #EndParkinsons ( #terminemos con él Parkinson) este mes de abril reconocido como el mes de hacer conciencia por la enfermedad que afecta casi 10 millones de habitantes al rededor del mundo no debemos olvidarnos de aquellos que dan de su servicio y amor incondicional para cuidarnos. No cabe duda que el cuidar de un paciente se toma toda una aldea…

El cuidador que podría ser un amigo, esposo, o familiar es parte vital e integral del equipo del cual todo paciente debe tener a su alcance. Pero a medida que transcurren los años después del diagnóstico estas personas también tienen sus propios obstáculos. Con frecuencia estas personas requieren de mucha flexibilidad para poder ajustarse al nuevo papel de ayudante y cuidador. Esta transición en el papel de responsabilidades puede dejar al individuo que enfrenta el nuevo papel un poco aprensivo e incierto de su futuro y pueden manifestarse en síntomas de depresión, ansiedad y conducir al aislamiento.

Aquí les presento unos breves consejos que he aprendido después de años de cuidar a pacientes con enfermedades neurológicas crónicas para que puedan sobre llevar la carga de mejor manera. Es importante de recordar que el cambio de responsabilidades puede presentarse de muchas maneras. Por ejemplo si el paciente es el encargado de trabajar y mantener la familia la esposa tal vez se vea obligada de regresar a la fuerza de empleo por lo cual se verá doblemente afectada por tratar de proveer apoyo emocional y financiero. En estos casos es importante de envolver a la familia especialmente los hijos si son adultos en el cuidado del padre o la madre. Ellos pueden ayudar con el quehacer de la casa o en preparar comidas. Amigos y otros seres queridos también pueden dar una mano cuando sea necesario.

Para poder sobre vivir esta nueva posición es no perder de vista sus propios sentimientos, pasiones, y sueños. Y no dejarse arrastrar por la corriente de la enfermedad.

1.    No espere perfección o saberlo todo. Dejen lugar para los errores que se puedan cometer. Es como ser una nueva madre se aprende en las trinchas de batalla. Solo tiene uno que estar dispuesto a tener nuevas experiencias aunque no tenga tendencia de cuidador. Recuerden que “todos los caminos conducen a Roma.” Quiero decir que hay muchas maneras de hacer la misma cosa. Encuentren lo que más les favorezca y háganlo suyo.

2.    Encuentren valor en su nuevo papel de cuidador. No vean la experiencia como obligación sino como una aventura u oportunidad para crecer y aprender. Ustedes tienen mucho talento póngale ganas y sonrían le a la situación y verán que una buena actitud cambia todo. 3.    No traten de hacerlo todo. No somos una isla. Por favor de poder ayuda a sus médicos, trabajadores sociales, líderes religiosos, y otros familiares y amigos. Asistan grupos de apoyo para evitar el aislamiento. Y visiten las redes de  http://www.pdf.org  o caregiveraction.com

4.    No se les olvide que todo tiene un límite y esto también pasara. Pero las lecciones que pudiera aprender le durarán toda la vida. No dejen de soñar y hacer planes. Como decía mi abuelo que en paz descansa, “siempre hay más tiempo que vida.”

When Roles Change-By Dr. De Leon

As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.

There is no doubt that caring for a Parkinson’s person takes an entire village…

The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.

Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.

So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.

Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.

It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.

The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.

 

  1. Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
  2. Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
  3. Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
  4. Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith.  Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
  5. Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.

Los Tulipanes Rojos : Símbolo de Esperanza y Expresión Artística Por La Dra. De Leon

Estamos de nuevo celebrando el mes del Parkinson y levantando conciencia para todos aquellos que sufren de esta enfermedad. Manden fotos de sus tulipanes favoritos aquí o en m página de Facebook

defeatparkinsons

Los Tulipanes Rojos : Símbolo de Esperanza  y Expresión Artística Por La Dra. De Leon

Al prepararnos nuevamente para celebrar el tercer Congreso Mundial del Parkinson hacemos honor a todos aquellos que viven y luchan con la enfermedad diariamente. Este evento se llevara a cabo el mes de octubre del dia primero al 4 en la ciudad de Montreal. Hay se reuniran las mejores mentes scientificas y clinicas al igual que los pacientes y sus familiars para entablar conversacion de como mejorar la calidad de vida y discutir los nuevos avances en este area de la medicina.
Hay gran jubilo entre aquellos que nos dedicamos a luchar contra el Parkinson pues este congreso se reune solo cada tres anos. El Parkinson es la enfermedad mas comun despues de los temblores esenciales entre las enfermedades de Desordenes de Movimientos abnormales. Se estima que hay aproximadamente 10 millones de habitantes en el mundo que enfrentan cara cara esta condición neurodegenerativa que ataca las celulas que contienen una quimica…

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Make the most out of your health team: by Dr. De Leon

As we continue to raise awareness for Parkinson’s and work together to #EndParkinsons, there are a few things I like to talk about. First, in order to have the best outcome with lower disability while living with PD is having a team of health professional to help guide you. The quaterback should be your neurologist preferably a movement disorder specialist or minimally someone who deals with Parkinson’s disease on a daily basis. However, having a great team at your disposal will be of no use if you don’t make most out of  your team. Yes, this means going to the doctor on a regular scheduled basis not just when we feel like it.

I know some people advocate patients having complete autonomous control of their health which includes choosing when they need to go or not to go to the doctor. We need to have both – we must be able to have accessible doctors when we need them as well as follow their scheduled appointments. I know having a chronic illness especially when not well controlled makes it extremely painful and tiring to continuously visit your physician and other health provides, to say the least. Yet, this is the time we need them the most.

As a physician and patient, I more than most understand both sides completely especially how expensive, time consuming, and down right difficult it is at times to see your physician. But, I also know that we even as a physician are not the best judges of what is going on with us and we need an objective opinion or set out of our situation to see the whole picture clearly. I think this is why sometimes we end up hospitalized, in the ER, or having more side effects than we should.

For instance, I am sitting here with walking pneumonia and unable to talk on a boat load of medications having thus far avoided hospitalization because serendipitously I was diagnosed in time, all because I am schedule to travel to be guest speaker. If I had not had commitment of speaking engagement I would not have been so forth coming in going to seek medical attention and probably I would have ended in hospital.

So, if you are like me and is having now problems but just had an appointment less than a week ago or not until 3 months down the road, what do you do?  A few years ago, you would just have left a message and wait patiently by the phone or perhaps had to go to ER if symptoms bad and no qui response from the physician/nurse practitioner etc.

however, we are living in a social media age. Email, Twitter, text messaging, FaceTime and patients portal are just a few of the methods available for prompt communication wih your providers. They can also help coordinate care and dispel concerns. Plus, you will have the benefit of having a permanent record of the exchange. However, using these methods requires some saviness on your part.

first, you must discuss with your providers what is their preferred method of communication. For instance, I can call or text my neurologist anytime I need. Some prefer to have their nurse or staff sort through messages.

next you need to be aware when or how often they check these messaging devices. If they only do once at the end of day- especially if they do less frequent you might need to still call the office as I do when I need something answered more promptly.

of great importance is knowning your providers emergency protol..which at least in this country usually involves dialing 911 first.

If you happen to live far away from your physician especially f in another state or country…discuss tele medicine or use of skype as communication.

Once, you decided on form of communication – the most important thing is sending a concise message focusing on a clear question or issue. Let them know if you need a response by a designated time and always put a subject line when sending email or text. If sending copies of other physician reports etc make sure your links are correct and go directly to subject  matter .