caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease

Instructions not Included When it Comes to Caregiving: By Dr. De Leon

Instructions not Included When it Comes to Caregiving: By Dr. De Leon.

battling stigma in PD, bullying in PD, chronic illness, parkinson's disease, parkinsons health and beauty tips, stigma and PD

Changing the Tides of PD Stigma from Whispers and Staring to Support and Caring! By Dr. De Leon

Changing the Tides of PD Stigma from Whispers and Staring to Support and Caring! By Dr. De Leon.

caregivers and chronic illness, chronic illness, depression and suicide, fall prevention in parkinsons, falls in parkinsons, parkinson's disease, parkinsons health and beauty tips

Tips for Making Life Easier for Both Caregivers & Chronically Ill Alike : By Dr. De Leon

Last month I have been dealing with my dad’s terminal illness. I have had my moments of frustration as many of you have in taking care of loved ones with chronic illnesses like PD because sometimes what we think is best for them is not what they think is best for them. So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath). This question is extremely complicated of when to override their needs and desires for safety sake?

For example my dad is very frail getting extremely weak and has fallen twice but still insists in using a walker instead of wheel chair which makes me cringe. It is important not to fall into a trap as a caregiver of assuming what the person with chronic illness or PD needs or wants. It would be best to ask that person what their wishes are. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather truly caring individual.

Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence …so instead of forcing wheelchair in the case of my dad, I explain my concern for him of falling again.

You must Reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones thus far. But, as his bones are frail and weak any small apparently insignificant injury even a simple bump from sliding off the bed can lead to a hip fracture or wrist fracture. However, if we are to not use wheelchair, then we must have a safe plan in place. So, he was instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to Sit at side of bed if reclining for few minutes rather than  jumping up from laying ( although  this is more theoretically purposes just so that he remembers to take it easy because in all honesty he is not jumping anywhere when movements are extremely slow, deliberate and  laborious); these recommendations are meant to safeguard him from getting orthostatic, dizzy and avoid subsequent falls. Furthermore, I again instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he does slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to daily needs of my dad I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease and terminal as is my dad’s condition? Are other legal documents in order?

Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things that need done taken care of.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  It is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They will ( I-you can ) provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (i.e. Help find a sitter)

Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills understanding and putting one in the other person’s shoes. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. The same rules apply for the caregiver … ask them to tell you their story. This simple act can allow them an outlet to relieve their stress and open the door of communication and a way for you to offer assistance in the area of their specific need. (E.g. My dad still wants to maintain some semblance of dignity and independence/ mom wants not to have  him break a bone and hurt herself in the process if he falls). So, we came up with specific compromises on how to do things like grooming in a manner that is safe and convenient for everyone.

Lastly but not least learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally… After all we are social beings …most of us even the shyest of us (we) thrive when we are in bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get the caregivers out of their stressful situation from time to time to avoid depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation but also to remind them they are individuals that have unique talents and gifts. It is important to Do the same for the patient – (to avoid same type of feelings) the social activities can be done together or separately-best if done separately from time to time.  Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected ” ice cream ” run or whatever their favorite activity may be like in my dad’s case fishing (even if it’s just in a pond, bucket, or fish tank because he is now too sick to go outdoors far away from home fishing as he would like) and my mom -shopping! (Of course don’t forget to get someone to watch patient while care giver goes out).

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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 defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

caregivers and chronic illness, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips

Parkinson’s: Not Just a Disease of Your Grandparents : by Dr. De Leon

Parkinson's: Not Just a Disease of Your Grandparents : by Dr. De Leon

Parkinson’s can affect young and old in all walks of life, although it is typically more common in those over 55 (known as Idiopathic Parkinson’s Disease). But it can strike young people even in their 20’s (younger age prior to 40 is known as Young Onset Parkinson’s). In the United States there are nearly 1.5 million people living with this condition and countless others who dedicate their lives to their care. Many of these individuals reside right in your community where you live. The financial burden not to mention the social and emotional devastation which is ever increasing is leaving many of these patients and their families isolated and destitute. Therefore, this April as we celebrate Parkinson’s Awareness Month nationwide, I like to invite each and every one of you to join me in honoring someone with Parkinson’s disease by doing whatever it takes to find a cure and ease their burden.
One way of honoring these individuals is by staying informed so that together we can raise awareness.
The more you know, the better equipped you are at helping your friends and neighbors who have to struggle with a chronic progressive neurodegenerative disease to find ways of coping. Parkinson’s disease is characterized by loss of a black substance deep in the brain known as the basal ganglia. This chemical called dopamine is responsible for our fine motor movements, coordination, muscle control as well as responsible for playing a key role in the reward-pleasure seeking behaviors in our lives.

4 main motor Symptoms Of Parkinson’s are :
Rest tremors
Gait instability
Muscle stiffness
Slowness (of movements)

Other non-motor symptoms include:
Loss of smell
Anxiety/depression
Constipation
Sleep disorders/restless leg/ REM behavior
Memory loss/ cognitive problems
Pain
Fatigue
Bladder problems
Visual problems

Risk factors:
Advancing age
Male gender
Decrease estrogen /early hysterectomy with ovary removal
Environmental toxins
Low Folate levels
Agricultural workers, well water consumption
Repeated head trauma or severe head injury
( others less known risk factors)
Hispanic ethnicity
Family or personal history of essential tremors
Family history of Parkinson’s
History of restless leg or REM behavior
History of anxiety/mood disorders
History of chronic constipation

If you have any of these symptoms please make sure you seek advice of a healthcare provider immediately. Although, there are no blood test to confirm diagnosis under the care of a specialist ( neurologist / or movement disorder specialist ) the diagnosis can be nearly 95 % accurate. Similarly, in the hands of a specialist the quality of life of Parkinson’s patients has been shown to be improved in several studies despite the fact there is no cure.
By seeking treatment from a specialist early on, the many medications (Sinemet is still the goal standard) and surgeries including deep brain stimulation ( DBS) can be used with greater efficacy.

So, what can you do to help and support those that have Parkinson’s in your community?
You can find a Parkinson’s study nearby and volunteer – Most studies in this country and I imagine in other countries as well never fill; one of the reasons why it takes so long to get new drug treatments. Or you may volunteer to drive a friend to a study.
Share the Parkinson’s information you learned with others.
Find a friend with Parkinson’s and exercise, swim, cycle, or take dance or yoga classes together- these have shown to improve the quality of life in Parkinson’s patients and increase mobility.
Join a Parkinson’s support group or start a support group.
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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 defeatparkinsons101@yahoo.com

parkinson's disease, parkinsons health and beauty tips

Los Consejos de Belleza y Salud #2 : ¡ Pintate los labios y demuéstrale al Parkinson’s quien es jefe! Por Dra. De León

Al terminar un año más, quiero hacer inca pies a algo muy importante, personal y apegado al corazón como mujer, madre, paciente, doctora y activista del Parkinson al igual que sobreviviente de cáncer -¡ EL PODER FEMENINO!

Al principio del año empece este blog a escribir como manera de sobrellevar la carga de la enfermedad del Parkinson al igual que informar e instruir a otros especialmente a otras mujeres que se encuentran en la misma posición que yo luchando del diario con la enfermedad. Ellas como madres, hijas, esposas, pacientes, auxiliarías de aquellos que padecen del Parkinson también igual que yo tienen el poder y valor dentro de sí de vencer y sobrevivir esta enorme carga que se nos ha sido enclaustrada.

Pero lo mejor de todo, les quiero decir a todas mis lectoras que la energía positiva que fluye dentro de sí mismas es la que las hace fuertes y les da el poder para destruir los obstáculos que les presentan el Parkinson. En sus vidas ese poder nace del simple hecho de ser mujer.

Al comienzo del año les di consejos de como vestir atractivas a pesar de tener Parkinson y como sentirse femenina y “sexy” y sobre todo BELLA con todo y el Parkinson.

Durante el año, también escribí sobre estrategias de como mantener la cabeza sobre los hombros aún con el diagnóstico del Parkinson.

Hoy hemos vuelto al punto de partida de nuevo, invitando a todas mis lectoras que tomen sus lápices labiales o coloretes en cualquier color fabuloso que más les inspire…ya sea rojo o rosa…para mi siempre los colores fuertes son más atractivos y más poderosos!

Porque yo igual que la autora Suzy Toronto soy de la opinión que las mujeres más poderosas siempre lucen un buen lápiz labial. Cuando pienso en en las mujeres que más admiró y que han contribuido a mi vida y carrera al igual que a la gran causa del mundo ” ¡siempre antes de administrar a los enfermos, a los pobres, o a cambiar la faz del mundo y sus políticas …ellas siempre se han puesto sus lápiz labiales primero!”

“Este acto al parecer no significativo nos traslada a tiempos más simples cuando las mujeres demostraban sus capacidades, astucia, sabiduría, determinación, y enfoques en PRIMERO pintarse los labios y DESPUÉS conquistar el mundo empezando con la familia haciendo lo que era necesario, debido, y justo.”

Yo igualmente crecí ¡poniendo ( aplicando me ) el colorete o lápiz labial antes de cualquier otra actividad! Aunque fuera un rosa muy bajito…en ese tiempo ese era lo único que yo tenía …
Aún en el la escuela de medicina cuando no tenía tiempo de comer o de dormir siempre cargaba conmigo mi colorete ( lápiz labial)- mi arma secreta. Antes de entrar al quirófano o a atender un paciente antes de pasar a mejor vida, me lo ponía. El solo hecho de aplicármelo era como sí por magia de pronto una capa invisible me protegía y ” me daba poder y valor para enfrentar cualquier dilema u obstáculo a mi alrededor.”

Ahora, años después cuando padezco del Parkinson, el solo hecho de ponerme el colorete o pintarme los labios significa para mi sentirme ” normal” y que todavía tengo fuerzas,coraje, y valor para hacerle cara al mundo. Este acto me ayuda a desafiar al Parkinson’s a la veces sintiéndome femenina, atractiva, poderosa aunque aveces este pequeño acto sea lo único que logre en el día como acción de control de motor.

El lápiz labial ayuda a enfrentar las aventuras, obstáculos, y me da fuerzas para seguir combatiendo en el mundo de incertidumbre del Parkinson’s.

Antes de ponerme mis calzones de “niña grande” me aplico mi color favorito (rojo) que resalté mi ” look” de diva .

Para ustedes mis lectores, no tienen que aplicarse un colorete o lápiz labial para sentirse poderosas puede ser cualquier cosa que las haga sentir bien.
Pueden ser unos zapatos favoritos de mucho color, unos tenis confortables los cuales les provoquén ir a correr, una camiseta suave la cual les ayudé a pintar y a expresarse con todos los colores del arco iris .

En resume, cualquier cosa que les inspiré a seguir siendo madres, hijas, esposas, pacientes, activistas y auxiliarías del Parkinson eso hagan del diario para que sus vidas y su viaje sea extraordinario y su canto cambie su mundo al su alrededor.

parkinsons health and beauty tips

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

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 llamada dopamina. La falta de dopamine hace que los que padecen de esta enfermedad precenten un cuadro clasico con rigidez muscular, temblores cuando estan descansando, lentitud de movimientos , y problemas para caminar.

El Parkinson nos podra robar las fuerzas, los movimientos precisos de las manos, y el sentido del balance pero nunca el espíritu indomable que existe adentro de cada individuo que pose la enfermedad. Ese espíritu que enfrenta la adversidad con coraje y hace de los “limones que da la vida margaritas” para festejar y compartir con los demás,es el que hoy celebramos, aplaudimos y elevamos como ejemplo para otros que padecen de otras enfermedades crónicas. Por eso creo que no hay mejor símbolo que el TULIPAN ROJO para definirnos a nosotros los que padecemos del Parkinson, especialmente como Hispanos. El color rojo de la flor demuestra nuestra pasión por la vida, sacrificio, esfuerzo, amor, devoción, esperanza, valor y fe. Todas estas cualidades son expresadas individualmente por medio del arte, la cultura, la música y la poesía. El desenrollo artístico pude ser a causa del deteriora miento del los niveles de la dopamina en el cerebro o como podría ser también resultado de los efectos secundarios de los medicamentos como son los agonistas de la dopamina o L -Dopa. Todavía no se sabe en realidad si el tener Parkinson promueve ala expresión artística en pacientes que nunca han tenido conocimientos o habilidades artísticas en el pasado o los lleva a encontrarse con talentos latentes pero lo cierto que habido varios casos en los cuales después de contraer la enfermedad se han desarrollado talentos como pintores, escultores, escritores, y músicos. Algunos expertos son de la opinión que esto sucede por falta de inhibición en áreas del cerebro normalmente dadas a la función visuo-espacial dando mayor atención a otros aspectos como el placer y la motivación y prestando menos atención a convenciones sociales. Pero cualquiera que sea la causa del aumento de expresión artística ya sea como mecanismo para hacer frente a la enfermedad y evitar altibajos o como proceso natural a consecuencia de los cambios químicos que ocurren en el cerebro del paciente con Parkinson, lo cierto es que todos beneficiamos. Como dijera el doctor Gene Cohen ” el arte es como chocolate para el cerebro”y si el chocolate tiene características similares con la química esencial defectiva en esta enfermedad (la dopamina) entonces sigamos expresándonos artísticamente para seguir combatiendo la enfermedad y evitando deterioro espiritual, moral, mental y encontrar mejor calidad de vida.
Así es que este octubre les reto a que porten un tulipán en su vestuario, planten tulipanes rojos, o saquen sus pinceles y pinten tulipanes en su vecindad o lugar de empleo para conmemorar las familias y los pacientes de viven con el parkinson. A la vez estos murales, flores y obras artísticas servirán de inspiración para los que quieran dejar de luchar porque la enfermedad ha cobrado demasiado ,la pasión por el arte y su colorido los ayude a toa seguir esforzándose porque sin pasión no se puede vivir.
Y nos vemos en Canada!

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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 http://www.pdf.org or at www.wemove.org