A week in the life of a Parkinson’s diva- by Maria De Leon

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“It is a beautiful thing when a career and a passion come together.” ~unknown

It is always nice when things work out serendipitously. What can be better than combining one’s own passions?  I tell you there is a great joy when your passions and interest and mesh together as it did this past week for me.

I was forced to be on a strict diet for the last 3 weeks in preparation for this past weeks poking and prodding in order to rule out any underlying recurrent cancer. Not being able to eat seafood, nuts, pasta, bread, or  dairy products was a challenge. Particularly when my to go snack is a handful of nuts. Plus, having teenagers around who are constantly foraging and gravitate top these same food groups did not make it any easier. I must admit it was hard and had to sneak in a couple of bites here and there of bread. Mom making fresh flour tortillas for breakfast did not help in the least.

So of course when my tests were done despite having severe nausea and feeling weak, I headed straight to an Italian restaurant to indulge in some lentil soup, and chicken sandwich loaded with mozzarella cheese, only after taking Zofran.

I was so extremely overjoyed to enjoy food once again that although the nausea seemed to have returned after eating, I could not pass the opportunity of visiting one of my favorite clothing stores-TALBOTS- love their red doors! Especially since there is none close to home. Plus,  I was sad I would have to miss yet again another great customer “party.” To my surprise, they were in the midst of hosting a fashion show. Of course this delighted me completely and quickly found a spot to sit. Initially, the nausea, heat and hot flashes from the small radiation doses I had received were extremely distracting. But as my husband always says “where there is a ‘Bebe’ (one of my many nicknames) there is a way.”  Surely I was not going to miss this fashion show and special prices event which I had stumbled into fortuitously just because I had some side effects to the treatment and was stiffer than usual.  So for a while I simply sat there quietly enjoying the ambience wishing I could feel better so I would not be sick in the middle of the floor. I stood once again and made my way to the table of delectable goodies to grab some cold water to take more pills when one of the attendants asked me how I was liking show. Trying to be polite and making small conversation so I could return to my seat, I asked how the models were chosen? she then proceeded to ask me if I would be interested in modeling for them at their next event.

Seems like suddenly I was experiencing another ‘Kamehameha’ moment all over. When we were in Hawaii over spring break while doing our usual touring, I began to experience severe discomfort which escalated to more intense pain in my back as we were walking. but suddenly upon reaching the site where King Kamehameha statue is located in Honolulu  because it is the headquarters for the T.V. show Hawaii- five- o, I became so enthralled that my pain and all discomfort dissipated completely- forever known in my family as the ‘Kamehameha effect.

Image result for king kamehameha statue in honoluluT

Having regained some energy, when the national sales manager Pam approached me about what I liked about their products and fall line, I seized the opportunity to discuss possible partnership to do Parkinson’s awareness just like they do breast cancer awareness. After discussing my role in advocacy, my platform on women’s issues in PD and explaining my love for fashion and need for women with PD to feel empowered over their disease, she was completely on board. although, they could not endorse PD as they do breast cancer awareness, she was willing to take back to headquarters and in meantime offered to partner in the winter for a charitable event with their red winter wardrobe line which could involve several stores in the Houston area. Although, nothing is set in stone as of yet, the possibility of this is taking place is terribly exciting, more importantly the seed was planted. Like all fruit trees  even though they must be watered and cared for, a fertile soil is essential for it to take root and grow. Lets hope this new idea takes and leads to greater awareness in women (gender) issues within the Parkinson’s community.

Furthermore, I was ecstatic about the possibility that I mentioned it to a good friend of mine who happens to be a drug rep for Azilect and she took was excited by this that she said she would talk to her superiors.

After spending a week in my old stomping ground (Houston Medical Center ) and seeing patient after patient with PD many of whom were young women- the time to take action is now and what better way to bring women of diverse backgrounds together and inform on PD then through a fashion show. After all, as one of the world’s best fashion designers who happens to be a Hispanic woman like myself  – Carolina Herrera, once quipped : “the impossible does not truly exist for (a PD) woman only time to achieve it.”

Together we are strong

Together we can #end PD

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all rights reserved – Maria De Leon MD

Looking for the Lovely in Life: by Maria De Leon

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Suffering creates patience and patience builds character and character builds hope.”

Romans 5:3-5

 

It is easier to find things to be happy about when things are looking up and everything is going our way. However, when we are faced with a chronic illness, especially as our strenght diminishes looking and finding lovely things around us, which reminds us of brighter days and better tomorrow’s, is not always an easy feat.

I love the word lovely…it means beauty beyond compare. Something that is worth loving and fighting for. In the Bible Queen Esther was described as lovely. this is the same word I would use to describe the love of my life- simply lovely!

Lately, as I have once more been confronted with declining health, I started thinking about this word which unfortunately is not use very much in our society. the power of this word led me to think about the loveliness of God in my life through the years. Now more than ever, I wish to again hold on to that loveliness and beauty  as I find myself being torn yet again about knowing what needs to be done from a doctor’s perspective  while being terribly unhappy as a ‘impatient’ patient that needs to submit herself once more to the medical scrutiny and becoming a test subject to determine my full health issues and get back on track.

As I gear up for an extensive week of testing which involves, poking, prodding and a bit of educated guessing I really have to focus on the lovely things in my life to get me through this rough patch where I may become worse before I am better; or discover another bad problem which I am not ready to accept or deal with just yet. All the while trying to maintain my composure, hope, faith, and a daily routine especially as the new school year is about to commence with all of its challenges and demands.

When we are down and troubled we as humans sometimes just want to quit and give up . But this is the time when we need to persevere the most.

How do we persevere in the midst of trials and hardships?

We do so by finding the lovely in our lives. Looking for lovely is akin to remembering someone we love deeply and is no longer present or near by.

I am sure you are all aware of what I am referring to. when you love someone wholeheartedly, everything reminds you of that person.

Similarly, when you are down and trying to hold on conjure up those images of people and places which brought great joy and comfort. Think about all the situations in the past which seemed bleak  yet; you were able to overcome through perseverance. Look around at the beauty of a sunset, or the colors of the changing seasons, or the calmness of a wintery scene. All of them are beautiful in their own unique way and serve a purpose.

Appreciate the changes that are inevitable as the seasons. Look forward to new discoveries, new beginnings, times of rest and pruning as we welcome the unexpected changes and surprises. Me suddenly having a mini stroke and pulmonary embolism certainly was out of the blue and unforeseen but  I am learning to embraced it as a way to enhance my patience, since this has always been one of my worst traits. As the above verse came to mind, I guess in order to achieve patience one must suffer. I got a disease that makes me slow in more ways than one. But, patience is not the end goal rather than living a life full of loveliness and hope as my character is further enhanced and stripped of things that make me less than lovely and keep me from my work of helping others.  So as I undergo further testing and evaluation, I will meet friends that remind me of beautiful things, I will cherish the love of the man I love, talk more with God and appreciate His goodness in my life even as I write this. Then use what I learn to take the next step in my journey in life with Parkinson’s disease.

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all rights reserved – Maria De Leon MD

(inspired by Bible study of same name )

Hospital Adventures of a Parkinson’s Diva: By Maria De Leon

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Last week after having a very successful trip to Baton Rouge for their 5th PD conference, I was suddenly struck with neurological symptoms resembling a TIA (transient ischemic attack) like all good doctors for that matter ‘bad’ patients, I self-diagnosed and continued with my flight itinerary. Upon returning home, I took some aspirin and proceeded to call my neurologist of my bizarre events and went to sleep. But, before I could make an appointment to follow up on my symptoms with my doctor, I had another unexplained episode. This time resembling a ‘heart attack’. This was scary as heck!  I then took myself to emergency room feeling lousy with chest pain, shortness of breath and mild tachycardia (fast heart rate) because I did not want to upset my husband who already had enough on his plate. don’t know how in really intended to keep from him since he is the only radiologist at hospital I went. of course as soon as my name came up, he was in the ER looking for me.

The initial thought of both consulting physicians was that my symptoms were related to PD. Although, esophageal spasms can occur in Parkinson’s disease causing severe chest pain which can radiate to arm, this is extremely rare and merits further studies to rule out more serious causes. Yes, women can die of heart disease and die more often than men because of unusual presentation.Also my medication Rytary can cause chest pains but no other symptoms; plus I had been on it for almost 8 months without problems. Thus, unlikely to be the cause of my new onset of symptoms.I was admitted for evaluation looking suspicious for a pulmonary embolism and proceeded to have a million dollar work up which again reminded me of the need for better understanding on the part of physicians and medical staff towards patients – particularly those with chronic illnesses like Parkinson’s. Also  for the need of us patients to develop greater self-advocacy while maintaining an open mind regarding physician’s point of view and expertise.

Both sides, I discovered still have room for improvement…this coming from someone who is both patient and physician.

First, it is hard to be objective even if you are an expert when it is your health on the line. However, having said this, you and no one else is the authority on your body. Only You know when things are NOT right!

Second, you must advocate for yourself. If you know something is NOT quite right. Find someone that is willing to listen and understand your feelings.

Third, although it is our nature to get upset when someone dismisses us or does not have a quick answer for our problem -remember that we have a chronic disease which can complicate presentation of many other illnesses. They also complicate the treatment plan for such illnesses. Nothing is black and white …even if you only have PD and nothing else. Now imagine what is like being my doctor looking at my list of meds and diseases? A veritable headache. Not everyone welcomes the challenge as easily as I do. in the spirit of making the best decision plan for my complicated disease state, a day was spent deliberating best treatment option that would have the least complications and side effects (which I truly appreciate).

As my pharmacist came to Inquire regarding my medication list because as she put it “this is a very long list. You can’t possibly be taking all of these?!” To which I replied, “yes I am!” I did not want to shock her even further by explaining that she was missing 6 other pills! Use these opportunities to raise awareness.

 Fourth, like in every realm of life there are always kind and not so kind people. Don’t take it personally. Be grateful for those who treat you kindly. Fortunately, there are always more whom are kind and willing to learn and care. Although, the haters can certainly make the days more challenging. It is best to laugh and move on. As I been doing regarding this one person who forgot her manners at home before coming to work and deal with sick patients.

There I was sound asleep for less than two hours, when in walks this person turning on all the lights stunning me and asking for my name. I was trying to get sleep out of my eyes while trying to orient myself to time and the scenario. Unable to read the clock correctly due to blurred vision, I asked her for the time, to which she replied in a loud voice several octaves from previous question, I might add, “Como se llama?”  As if I had not replied to her answer of what my name was because I was both deaf and non – English speaking. I barely answered when she plunged a huge needle in my hand almost at a 90 degree angle to draw my blood. Needless to say my vein blew leaving a large hematoma for which she proceeded to blamed me.By then my sweet nurse came into room to sooth me and reiterated my request to be gentler and use a smaller needle.

Fifth, always have advocate with you when hospitalized that knows your condition if you are not able to voice it yourself. Plus, always carry your PD (other medical illness)medicines with you. This has saved many patients including myself because hospitals don’t always carry the medications you are taking or are able to administer them in a timely manner as you may need.

The hospital was never able to get Rytary or Neupro and they were not able to get my medicines squared away till 24 hours after admission. Fortunately, I had my own to take on a timely basis.

Never dismiss new symptoms as automatically being part of PD and be ready for sometimes extensive evaluations to get to the root of things.  Remember to voice your concerns in a polite manner as you give the experts an opportunity to care for you keeping in mind that having a chronic illness that is systemic in nature can pose rather significant challenges and hurdles to overcome to achieve the best possible outcome which may take time to achieve as well.

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all rights reserved – Maria De Leon MD

Grey Matters: By Maria De Leon

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Lately, I have found myself thinking about the areas of my life in which things do not fit neatly into a box.  As Forrest Gump said; ‘Life is like a box of chocolates and you never know what you’re gone get.’

One minute everything is all ‘hunky-dory’ and the next thing you know life is a train wreck; we are not even sure what hit us.  As many of my dear friends and their loved ones have suddenly taken ill and some gone to be with the Lord, making decisions about my (our) health and that of others we love appears more complicated than I (we) ever imagined. Even as a physician, the answers are not always clear cut or black and white.  Some of the decisions we have to make on behalf of our loved ones seem like they are more complex as we age.

Learning to make the right decisions is something that does not come easily if you tend to live your life in the grey areas as I often do these days- not by choice but by sheer life’s design. For instance, sometimes what I want as a patient is directly opposed to what I want as a doctor or know that needs to be done as a doctor or neuroscientist to advance the science. As a neurologist, I know that medicine is much an art as it is a science. Perhaps even more than we realize. As with everything in life some have more passion and talent for the art than others.  This means a lot of trial and error (more for some than others) to reach the right combination of medications and treatments to make me (patients) better. However, as a patient and an Inpatient, one at that, I want to feel better yesterday and don’t like to have to feel like a Guinea pig when trying new treatments.

In this age of Obamacare, doctors are  under a great deal of pressure to see as many patients as possible in a short amount of time just to stay afloat in the business side of the practice – but as a patient no one wants to feel like just another number. We desperately need someone not only to listen to us as people with living with a chronic disease; but to also to understand our needs. This is where having knowledge of both is greatly needed to arrive at the right decisions in the care of any patient.  I am extremely glad to know there are new centers popping up in various universities like John Hopkins University that offer classes in ethics and decision making to prepare doctors, health professionals as well as researchers to understand the complexity of decisions that need to be made on a daily basis regarding others life’s.

Sure it’s easy to recommend no driving when clinically mandatory but what if this is the only person who drives in the family on whom everyone depends on for transportation for school, work, shopping, doctors’ appointments, extracurricular activities, etc. ? Of course this decision will be met with a great deal of antagonism more from the person being asked to quit driving as well as from the rest of the family; as opposed to a person  who is retired has no young kids and has others in family who can do driving!

After watching the heart wrenching story of ‘me before you’ based on the novel by JoJo Moyes by same name.I am torn even more as a physician and patient with the struggles of others and even my own wishes should I ever become in a state where there is no more quality of life. What is morally and Ethically correct does not always align with the patients’ or family wishes. Should we be allowed to play God? Who decides? When do we decide? Are there consequences to this type of thinking? Are our decisions sound? or emotionally charged based on what we may be feeling at the time?  Me Before You

There is no easy answer and ultimately we all have to make our choices based upon our convictions and religious beliefs. However, as a Christian and physician, I know for a fact that miracles do occur, that God always has the last say, that physicians make mistakes and new advances always in the horizon. Plus, I also know that we tend to make poor decisions when we are emotionally exhausted, fatigued and in pain. I have had enough pain in my life to know that it does not take very long before it begins to grate on your nerves and those around you. However, I have also learned that nothing, even the worst, pain last forever!

Therefore, it is important to always allow some passage of time and reevaluate your wishes and decisions because feelings and circumstances change. One should never underestimate someone’s will to live and fight either or vice versa. However, this does not mean we should give up, take our own life, or worst ask others to take our life. It’s one thing to stop medications, it is another totally different to stop feeding, watering, and oxygenated if needed to survive. Many times as a physician, I had to abide by families wishes on a patient that I would never have given up on and many other times I have wonder why we were forced to hang on to someone who was only existing. As you see I have cried many times for others. I cried so very much at the movie, I just mentioned, and was so extremely disappointed in the ending – which unfortunately has happened several times with people chronically ill who want to terminate their own lives.  Aside from the fact that he was euthanized, as a physician I found several problems with this. Seems like sometimes, as he did in movie, we (he made) make  a decision based on emotionally charged depression and frustration and others feel guilty about their own health and pleasing the invalid they go along with these irrational thoughts even if they themselves do not agree. Sadly, even when circumstances change they feel they must stick to a plan agreed upon and are not willing to allow for life’s variables such as love lifting depression to derail their initial thought. As a caregiver, team player, physician, and person with PD, I encourage everyone to reevaluate their wishes and desires every so often especially taking into accounts new treatments and new life’s circumstances.

For instance, I had a patient with severely advanced Parkinson’s disease who had tried everything and was now bed bound unable to swallow and was having trouble breathing due to severity of muscle rigidity. He was placed in the nursing home thinking he would be transferred to hospice soon after. Within a few weeks of him being there, Neupro patch came out, so I had to try. Would you know it that he was able to regain motor function, feed himself and ambulate on his own. He left the nursing home and lived the next 4 years to the fullest.

Remember, ‘as long as there is life there is hope’… immortal words from an ancient slave who became a writer. (Life of Cicero)

Sometimes is good to step back and re-evaluate disease from a different perspective even if it does not fit neatly into someone else’s idea of what life should be like with PD as long as you are living to your full capability- must continue as if cure was already on the way!

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all rights reserved – Maria De Leon MD

Como ser una Mujer que no se Rinde Frente a la Enfermedad del Parkinson: Por Maria De Leon

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“He peleado la buena batalla, he llegado a la meta- he mantenido la fe.” 2 Timoteo 4:7

 

Siento como que he estado alejados de ustedes mis estimadas amigas por largo tiempo. Aún más por los estándares de hoy en día impuesta por la sociedad y las redes sociales que nos lleva a querer todo de inmediato sin tardanza ni retraso. Así es que les admito que tal vez estado fuera y lejos de ustedes más tiempo de lo que creía.

Pero a veces para continuar sirviendo y siendo de beneficio para otros necesitamos tiempo para restablecer nuestras almas agotadas.

Precisamente esto es lo que he estado haciendo las últimas semanas del mes. Para poder ser mejor persona, escritora, mentor, y orador. Además tenía que tomar tiempo para celebrar un año más de vida que Dios me concedió, pues hace una década me dijeron que solo me quedaban 6 meses. Aunque ya no es tanto celebrar el número exacto de anos sino que estamos vivos y podemos seguir luchando y disfrutando de las riquezas del Todopoderoso.

Este año ha sido increíble permitiéndome viajar a varias comunidades donde habitan personas con párkinson para alentarlos y motivarlos a seguir luchando. Durante las cuales he tenido el placer y orgullo de conocer mujeres valientes y fuertes de espíritu que viven y luchan del diario con esta enfermedad.

Todas ustedes son mi inspiración – lo que me motiva a seguir a delante- so lo tengo que recordar a mujeres como mi amiga Nan Little que a pesar de tener párkinson pudo escalar la montaña del Kilimanjaro hasta la cima.

Lo que he aprendido a través de mi jornada en esta vida especialmente en los últimos años desde que me diagnosticaron a mí la enfermedad, es que las mujeres fuertes nunca se rinden frente al fracaso o la tormenta, ni se olvidan de sí mismas y mucho menos de los demás.

Mi espíritu guerrero viene por medio de mi fe la cual esta contantemente siendo probada y les juro que no es perfecta y muchas veces fracaso y hay días que es necesario empezar de vuelta varias veces para poder seguir costa arriba.

He aprendido 5 lecciones importantes que toda mujer que no se da por vencida jamás tiene que aprender. Esto lo aprendí de un estudio bíblico sobre el libro de Ruth.

Ruth era una mujer que había perdido todo su marido, su familia, su hogar, hasta su fe (por un breve tiempo), pero nunca perdió la esperanza. ¿Cuantas de nosotras nos hemos encontrado en la misma situación? Estoy segura que alguna de ustedes como yo se sintieron solas, abandonadas y quebrantadas.

¿Qué es lo que entonces debemos de hacer para continuar la batalla y perseverar?

Especialmente cuando las fuerzas se nos agotan y quisiéramos quedarnos para siempre metidos bajo las sabanas y no enfrentar al mundo nunca más o simplemente no SENTIMOS las ganas de luchar un minuto más.

  1. Tenemos que aceptar nuestra presente circunstancias. Nadie disfruta una vida difícil, lección dura o tener párkinson. Pero a veces es preciso tener estas lecciones o dificultades para reforzar nuestro carácter y sacar lo malo. Yo por mi parte aunque no le deseo a nadie esta enfermedad ha sido una bendición pues me ayudado a ser mejor, tener más gratitud y vivir con mayor dicha que anteriormente.
  2. Necesitamos aprender disciplina y continuar aunque no tengamos o sintamos ganas de hacerlo. Hoy en día damos demasiada importancia a los sentimientos- como nos sentimos, que sentimos… pero a veces los sentimientos pueden ser engañosos y nos pueden paralizar. Tenemos que ser disciplinadas en nuestras vidas. Por ejemplo cuando estudiaba medicina aunque no me gustara el horario, el clima, las clases tenía que estar allí. A veces tenía que atravesar todo el centro de filadelfia a las 3 de la mañana para poder llegar a tiempo y pasar por las montañas altas de hielo congeladas en las esquinas bloqueando la pasada.
  3. Debemos tener generosidad emocional hacia los demás. Es fácil dar lo que nos sobra o tenemos de más, al igual que hacer donaciones y escribir un cheque. Pero es mucho más difícil dar algo que no tenemos y aún más cuando lo que nos piden es algo que nosotros también necesitamos. Me recuerdo un día como los que a veces tenemos en lo cual todo es trabajo y dificultad, donde no podemos ni vestirnos ni toleramos las medicinas y todo se nos cae de las manos dándonos más trabajo. Pues así había empezado y no podía salir de casa por lo mal que me sentía pero estaba en un grupo de estudio bíblico de mujeres y volví a llegar tarde. Ya iba molesta y frustrada conmigo misma y con la enfermedad pero al entrar al fin me relaje un poco pero no necesitaba un sermón amonestándome acerca de mi tardanza. Pero una dama ya de edad de repente me dio la sorpresa al reprender me con agresividad por llegar tarde y me recordó que si ella con su edad podía llagar yo también debiese de hacer lo mismo. Claro, esto no me callo nada bien y en ese instante quería descargarle toda mis frustraciones. Pero calle. Le pregunte en seguida si se sentía bien pues era fura de carácter que estuviera tan molesta. Al instante soltó el llanto pues había sido diagnosticada con cáncer. En ese momento todo mi enojo se derritió y me dedique a consolarla a pesar de que solo quería ir me a la casa y seguir vomitando. Lo interesante es que al transcurrir la mañana entre más le dedicaba tiempo a ella mis malestares y achaques se volvieron insignificantes. Al fin de todo yo me sentí mucho mejor el resto del día. La mejor manera de suplir nuestras necesidades emocionales es dando a otros lo que nos hace falta. Si amor. ¡Da amor!
  4. Estar siempre con las manos abiertas. Cuando uno está accesible hacia otros, las personas se acercan con más facilidad y frecuencia para ayudar y apoyar. No podemos aconsejar a otros si no se nos pueden arrimar o si siempre estamos molestos y amargados. Recuerda que la vida siempre se va a empeorar/complicar antes de mejorar
  5. Finalmente, sigamos adelante en Fe aun cuando es imposible ver la luz al final del túnel. Muchas personas se han dado por vencidas ya para cruzar la meta. No sé por qué pero nosotras las mujeres tenemos esa tendencia a darnos por vencidas más fáciles y antes de tiempo tal vez porque como yo son impacientes cuando lo que esperamos no se nos da de inmediato. Yo tengo casi treinta años esperando un sueño y seguiré esperando hasta que sea realidad. La vida es como escalar esas montañas peligrosas y resbalosas pero para poder vencer y llegar a la cima se necesita escalar con cuidado un pie adelante del otro sin mirar atrás. No quiero que nos volvamos como la mujer que intento cruzar el canal Ingles y duro días y atravesó por muchas dificultades y a la hora de lograr el propósito fallo por que la neblina oscureció su visión estando la meta a solo unos cuantos pies más.

 

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all rights reserved – Maria De Leon MD

How to Become A Parkinson’s Woman Who Does NOT Quit!: By Maria De Leon

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I have  fought the good fight, I have finished the race- I have kept the FAITH!”

~2 Timothy 4:7

I feel like I have been gone from you a long time and perhaps by the standards of today where everything is done in a hurry and we want things yesterday…I have.

But, sometimes in order to continue serving and working we must take time to replenish our soul. So, this is precisely what I have being doing the last month and 1/2 to be a better motivational speaker and writer but above all a much better person. Of course, I took time to celebrate another wonderful year of life. I am particularly grateful to say I am getting to that age where age is just a state of mind and not an actual number since 10 years ago I was told I might not be around longer than 6 months!

All the traveling I have done over the last 7 months doing women & PD  work along with motivational speaking to various Parkinson’s groups has been a wonderful experience allowing me to meet all sorts of incredible women  and people across the country who are living with and caring for loved ones with PD.

You women are my source of inspiration- women like my friend Nan Little who despite having PD was able to climb Mt. Kilimanjaro.

What I have learned in my own journey of life and with PD in the last decade is that strong women NEVER quit on themselves or others no matter how challenging the task is or how though the going gets.

My own personal strength comes from my faith in God and believe you me when I tell you this is by no means perfect. I falter a lot and have to start over sometimes multiple times a day ….

I have learned 5 secrets which strong women who never quit employ- this from a Bible study on Ruth. Ruth was a woman who lost everything…her family, her husband, her friends and her own faith for a while but never let go of HOPE. I am sure many of you like me have found themselves in this situation.

What then must we do to Persevere?

When all we want to do is QUIT and hide under the covers or we simply just don’t FEEL like we can go on a second longer? 

#1 We must ACCEPT our present circumstances even if we do not like them. No one enjoys a hard lesson, having a hard life, or having PD. But, having Parkinson’s may be the way to a more refined life (happier, better you). I know that although I don’t wish I had PD I have become a kinder, nicer, more caring, more patient person than I was before.

#2 We must FOLLOW THROUGH despite our feelings. These days we give to much emphasis to how we feel and what we feel; but sometimes feelings can be misleading and can paralyze us. We must have enough discipline and conviction to keep moving forward whether we like it or not. This is what got me through all those years of struggling as a student with little money and little to eat because I had a goal to become a doctor! Even if I did not like the hours, walking across a deserted Parkway lined with homeless people at 3 am, in the middle of winter storm and had to walk across miles of plowed snow blocking side walks freezing my knee caps and face off –  I HAD to go! The same with PD. Sometimes we use it as an excuse to forgo commitments and become undisciplined in our life. Yet if we learn from a strong woman like Ruth despite her anger, despair, brokenness, and sadness she still went out to pick up the left overs in the field to eat.

I have discovered in my own life that when you are willing to follow through no matter what things just happen- you suddenly find yourself in the right place at the right time meeting the right people. That’s how I chose my undergraduate which led me to becoming a Parkinson’s specialist and found PDF who also led me to you fine women.

#3 We must Keep our hands OPEN. When you are accessible, people can come to you freely and can count on you. You can’t very well be a mentor to others or support others if you are not approachable and are mean, bitter and off-putting. Life will always be messy before it gets better.

#4 We must have emotional generosity It is easy to donate money or write a check or give of your time when everything is well and you have time to spare. But, what about giving what you don’t have? I once was going to a bible study of course I was running late as usual because my pills were not working, I was throwing up, I was having a hard time dressing and so on…you all have been there at one point or another. when I finally made it I was relieved to be there although was already feeling bad for not being able to come on time so I certainly did not need a sermon from one of the elder ladies who suddenly snapped at me for being tardy and pointed out to be that if she being an older woman could make it on time – I certainly could! of course, I’m don’t have to tell you that this did not suit especially since I was already feeling physically ill. although, at that moment I was feeling less than loving to say the least I held my tongue and asked her instead if everything was okay with her because she was not being herself? she broke in tears..  She had just being diagnosed with cancer! Needless to say, all my anger melted away instantaneously and even though I was feeling lousy I found somehow courage to stay with her and console her until she found relief. Interestingly, the more I gave of myself the more I found to give and ended up feeling better the rest of the day. The best way to have your needs met is to give others what you need!

#5 Finally, keep moving forward in faith even if you don’t see the end of the rainbow.. so many people have given up just before the crossed the finish line and this is a worst feeling to have. For some reason we women are the worst at this, we are impatient when we don’t see the desired results immediately but like climbing a steep mountain with winding treacherous paths, the best way to keep moving forward is one step at a time in the right direction and keep waiting!  I don’t want us to become like that famous woman who set out to row across the English channel and went on and on through all kinds of perils and overcome with fatigue, self-doubt and exhaustion gave up a few feet away because the fog had clouded her vision.

Cry if you must- but NEVER give up!

Sources:

5 habits of women who don’t give up by Niki Koziarkz

copyright-2016

all rights reserved – Maria De Leon MD

In Search of the Right Pair of Shoes: By Maria De Leon

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Those of you who have been following my blogs for a while and have read my “Parkinson’s Diva,” book will know how much I love a good pair of shoes. Shoes are an extension of ourselves; they speak of our style and who we are without having to utter a single word. plus just as a well tailored outfit makes a woman so do a beautiful well fitted pair of shoes can make a woman feel special, elegant, and capable of conquering the world even if she does not much wealth.  thus, I am always in search of the right pair of shoes that will empower me for whatever situation I am facing at the moment that will complement my attitude style and of course my ever present red lipstick.

Shoes have always been a passion of mine with so many styles and colors to choose from I could go crazy. However, when I began experiencing lower limb dystonia and the pain became more intractable, the first thing I did was rid my closet of all my favorite shoes which I believed were contributing to my pain. I was forced to wear orthopedic shoes which made me feel so self conscious and worst these did not help alleviate my pain.  I missed wearing my stylish shoes and especially my heels which I was accustomed to wearing since I was a teenager. Then came the disequilibrium followed by frequent falling which led to even more trouble after I herniated a lumbar disc. there was no way I could wear my 3 inch stiletto heels any longer. But I was determine that Parkinson’s was not going to dictate how I dressed or what I wore on my feet which made me feel uniquely feminine just the same. So I started my long search for ‘cute,’  comfortable yet ‘stylish’ shoes. Although, over the years I have acquired a new collection of  attractive shoes which have also provided me with the support I needed, I always felt that the range of styles had been dramatically decreased just because I had certain limitations. this meant sacrificing some of the color I love as well as variety of style.

Now, as I have begun to expand my horizons once more I felt I needed something more akin to my style. so for weeks I have been in search of the perfect pair of shoes which could accompany me in all my travels as I lecture around the country. It is always hard to find something elegant yet with a simplistic attractiveness that would give me the confidence required to do my job while maintaining my equilibrium and not causing pain.

After much probing through various sites, I hit the jack pot! I was simply ecstatic. I had finally found beautiful, colorful comfortable shoes that were not too high less than 2 inches most in wedges, kitten keels, sling backs, peep toe, and flats. I was in heaven. only problem is that they are pricy and no longer having a doctor’s salary these are beyond my budget. http://www.beautiFeel.com Even the name of the company was perfect and seemed to suit me. However, I quickly formulated a plan, with the assistance of my fashionista friend in crime who is equally gaga for beautiful shoes. I would invest in THE ONE Perfect pair that would accompany in all my travails. Meanwhile,  I am dreaming of a wedge, sling back peep toe shoe with black and white stripes similar to Kate Spade designer shoes with a small red flower on top ..

A Parkinson’s diva can dream as it is the shoes that allow a woman to conquer the world.. and some day I will again despite this Parkinson’s disease!

Meantime I have redecorated my guest bathroom with paintings of stiletto heels and powerful messages that inspire me to keep going in this race.

copyright-2016

all rights reserved – Maria De Leon MD

Unraveling Complexity of Being a Chronically ill patient: by Maria De Leon

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A decade ago, I would have sworn I was the healthiest person; sure I had minor inconveniences like thyroid cancer at young age and migraines since childhood. But my life on the whole was great! Not that is not great now just different…I took one medication for my thyroid and every so often I needed a migraine abortive medication. I rarely set foot on the premises of a pharmacy. I would take my thyroid mediation like clock work without much fuzz. I NEVER heard from insurance, pharmacist, or other doctors regarding myself. of course, I spent countless hours dealing with all of these regarding my patients. each year, the number of hours I spent on phone and written letters on behalf of my patients steadily increased by now most doctors with a busy practice like mine spend a great deal more time trying to get around the bureaucracy and paper work involved just to get patients what they need to get better. the most frustrating thing besides arguing with insurances about approval of much needed medications was arguing with them about approving benefits to cover their care especially in terminal cases. Too often the help came too late.

Now, I am a walking, breathing, veritable pharmacy – my purse has grown over the years just to accommodate the ever growing number of medications I require to function; which invariably keeps expanding. Each time I think I have stabilized, there pops something new to throw a wrench in the system. Just the other day, I spent the morning at yet another unforeseen doctor’s visit due to acute labyrinthitis from an ear infection and guess what? More meds were thrown in the mix. Now, I have been assigned both a nurse and a pharmacy specialist to my case.

First, where were these people when I needed them to help out with my patients care? Secondly, in theory having a past medical illness or chronic disease  is not supposed to matter in the coverage of an individual by any insurance. Yet, in reality all of us who live with a chronic disease is being analyzed by some committee somewhere as to how much “resources” we are using. These resources which include medical, laboratory, ancillary, and pharmaceutical services are precious commodities which yearly are contracted to the lowest bidder. While, the premiums and out of pocket expenses continue to go higher as the coverage for those commodities continue to go lower for those of us who happen to have the misfortune of having a serious medical problem. Everyone who lives with PD and other chronic illness can testify to this fact.

After laughing out loud in disbelief for having NOT one BUT two specialized people dedicated to help with my care, I began to shake my head regarding the absurdity of our medical system. After speaking with these well meaning individuals who did not realized, I was a doctor, neither one had any answers to my REAL problems or concerns. No! I DON’T NEED SPECIAL EQUIPMENT, TRANSPORTATION, OR HOME SERVICES- ALL I NEED IS APPROVAL OF MY EXTREMELY EXPENSIVE MEDICATIONS AND TESTS so I don’t require ANY of the above and won’t end-up in the hospital as many of my patients have in the past due to poor coverage of medications and frequent changes dictated NOT by real medicine rather by pure economics!

So, after an hour each, they both politely stated they could NOT help with my problems. They could not convince the people they work for that these medicines are keeping me functioning and that perhaps might even help me return to gainful employment and at minimum are keeping me out of the hospital and getting worse medical problems if they were only able to approve the PET scan my physician ordered to make sure my cancer has not returned. But, to no avail. The answer was ALWAYS NO! But, will call you again next month at the same time. No wonder I like that new song of Meghan Trainor ” No.” “My number is no!, my name is no!, my {everything} is NO!” when I talk to the insurance companies…so do we need to let it go?

I hope we DON’T let it go otherwise we as a society will continue to hurt and suffer the consequences and end-up in a state not very dissimilar to the one in Mexico and other countries where socialized medicine has taken root.

I still cringe at the terrible experience my family underwent while my grandfather was hospitalized for a GI bleed in my hometown in Mexico. First, after having to transfer him to a “private” hospital because there were no medicines or even much staff at the government owned facility-the specialist he needed, not unlike what is already happening here in many smaller communities, was 5 hours away in another state and could not come for several days. So, he continued to bleed for which he required 14 pints of blood which by the way the family had to procure on their own because the government has no money to maintain a blood bank. He ended with 2 mayor strokes subsequently- which of course I witnessed personally and was helpless to do anything about since there was no treatment available for what he needed.

I am afraid that as the population continues to age and incidence of dementia, Parkinson’s, strokes and other chronic debilitating diseases begin to rise the quality of life for each individual will steadily decline in this country despite all the major medical and technological advances this country has unless we step up and demand change. please contact PAN/MJfox  @ http://www.parkinsonsaction.org  and after June 1st @ http://www.michaeljfox.org/policy

-let them know its not ok to have a monthly struggle just to get the medicines your doctor prescribed or have to choose between basic necessities and affording expensive medications which now include many popular generic brands which in some cases cost the same or more than the brand! and remember to just say No!

copyright-2016

all rights reserved – Maria De Leon MD

 

 

My Experince with the Evolution of Retail Prescriptions:By Maria De Leon

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Every time I go to the pharmacy as of late, the joy seems to be knocked right out of my soul for at least an hour. Used to be that I could just call and have my prescriptions delivered to my office no questions asked. Then as the number of medications began proliferating due to my Parkinson’s diagnosis I had to start doing drive through. First, no problem would request pick up and a handful of bottles would be given to me at a reasonable price. Then came the next stage…”please move to next window,” wherein I would sit there patiently each time longer and longer as the pharmacist would have to argue with insurance about coverage with an ever increasing escalation of price and a decrease number of pills given. This eventually led me to having to park and go into the pharmacy to discuss alternative options. Then came the inevitable forced changed by new Obamacare to get Medicare. Although, I had perfectly good insurance which although expensive it allowed me to get my medications without much hassle other than increasing yearly out of pocket cost. But suddenly because of my diagnosis, I was told to be “fortunate” to qualify for Medicare so my other insurance simply refused to cover expenses because under new law I WAS eligible for this so called wonderful privilege of having Medicare! After two months of trying to get the RIGHT Medicare coverage, I obtained the one government assigned to me NOT one I chose because I had too many illnesses. Was this new law not supposed to give insurance to all people independent of health status?

Well, I got insurance. I guess they forgot to qualify as to what sort of coverage people like me with chronic illnesses in reality will obtain!

Now, no longer can I get the medications I want, when I need but is a monthly battle of wits between me, the pharmacist and the insurance company taking a couple of hours at times just to get my meds and sometimes even after this length of time even with letters from the insurance company stating I have approval of medications in hand the insurance company refuses to honor this contract leaving me with two choices due without medicine or pay upwards of $300 per prescription.  All the while, as I sit there I see person after person of all ages and walks of life get the same comment…” Sorry, your insurance did not approve this prescription” or “you must get authorization from your physician first,” as if physicians sole job was to spend all day filling out the hundreds of Forms requested on a daily basis by their patient clientele. No wonder doctors are currently experiencing more burn out and frustration and disappointment in their career choices than ever before. They have no time to treat patients or to practice their calling because filling out mundane useless paperwork. web_banner_2_300x250

Each time invariably they will say how desperately they need their medication for management of current illness requesting retail price without insurance and the great majority have a sinking saddened look as they walk away without their much needed prescriptions. This is because in the last several years’ retail prescription prices have increased six times faster than 1.5 % inflation. This is according to the new AARP Public Policy Institute (PPI) report. Even the prices of so called generic drugs has escalated to the point of in some cases being more expensive than brand name drugs. The average annual prescription cost has reached new heights of over $11,000 which according to the experts is nearly 75% of the average annual Social Security benefits.

If these trends continue people are simply going to stop medications which are no longer affordable increasing the taxpayers burden of having to not only pay for the extra cost of medications; but also for an increase number of institutionalized people with chronic disabilities like Parkinson’s disease and other neurologically progressive illnesses such as stokes, and Alzheimer’s which will invariably result as their disease progresses due to absence of adequate treatment. As it is now, my opinion and that of many of my colleagues is that many Parkinson’s patients are not well controlled and suffer unnecessary side effects and disabilities due to the contra into in treatment options dictated by each individual insurance plus the increased limited availability of samples or assisted drug programs for patients to qualify under.  For instance although there are no generic alternatives to Azilect many insurances insist of altering doctors recommendations of use of this medication for an older drug Edepryl which has a generic form known as Selegeline HCl. Although both are in same class, they are altogether different in composition. Azilect is much better tolerated and effective MAO-B inhibitor while the former acts as an inhibitor to both A & B.  Another  example for which I believe so many patients suffer from dyskinesias is the persistent use of older traditional levodopa/carbidopa compounds in lieu of newer intermediate release formulations which are shorter acting and have more side effects than newer compounds in my experience. pdftulip

These newer formulations like Rytary are upwards of $ 500 a month no one can take this at these rates especially if they have to take another 10 medications half of which are almost s expensive so they opt for cheaper drugs with higher side effects decreasing their quality of life in the long run. And since we can’t even rely on cheaper generic drugs to offset  the cost of brand name medications and specialty drugs we are threading very dangerous waters leading to serious implications not just for us with chronic diseases like PD but for the entire health care system which will inevitably implode on itself at this rate unless we do something.  As I said many times, we must lobby for our rights to have access to the medications that our physicians feel are necessary for us to have a true quality of life  and not what our insurances or government think is best for us! Lest we become a nation over run with vexation and cost in attempting to care for an increasingly growing elderly population with increased  neurological diseases like PD. Take action and start demanding change today by writing to your state and national congressmen and letting PAN  (Parkinson’s a ion Network) / MJFOX  what the real concern is for it makes no difference if we have a hundred new PD compounds no one can afford except the extremely wealthy.

So, I take my daily Rytary samples with a great deal of gratitude and introspection since it is affording me to feel like myself again after 10 years of battling with this disease. but as I do I am wondering how long I will have to continue feeling like ‘me’ because when samples dry up no longer will I be able to afford to take this expensive drug. I will continue to pray for change in the system for all who have the right to access to medications that allow them to be themselves once more. In the meantime, I will also continue to make use of my time, efforts and  productivity to advance Parkinson’s awareness, fight for better treatments along with a cure with equal affordable access of these treatments for all who currently live with PD.

Together we can #EndParkinsons

copyright-2016

all rights reserved – Maria De Leon MD

 

 

Women & PD: by Maria De Leon

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My thoughts regarding my life with Parkinson’s as an MDS  mirrors those of a great warrior when she quipped  “it feels as if this life is not my life. It is a second life. People have prayed to God to spare my life and I was spared for a reason. To help others”…(with the same struggles)- MalalaIMG_1996

 

It has been a couple of weeks since I wrote down my reflections and introspection; but for a change rather than musing out loud I have been amusing myself meeting so many wonderful, valiant women with PD around the country. These women from Hawaii to Arizona have inspired me to continue advocating for women all around the world. They are evidence that the well rooted common public opinion regarding women as the “weak” sex should be reconsidered. Especially, when it comes to the notion of how women living with Parkinson’s should act within the realm of this progressive degenerative illness. Yes, it is true that still we have a great deal of work to do when at least a third of the world still treats women as property and as second class citizens; yet among each culture and ethnic background we find examples of women who are courageous beyond measure who are willing to stand up not only for themselves but for others. Women like Malala who despite her young age, she was willing to put herself in harms ways in order to defy conventional wisdom and the abhorrent treatment of women in her country earning her the Nobel Peace even at such a young age. Her story reminds us that a strong voice in the midst of adversity and imperceptible roar cannot be silenced.IMG_2001

Although, we are not in this country by any means putting ourselves necessarily in the path of death, as some women in other parts of the world are, trying to alter common place treatment of women within the medical confines – still takes a certain amount of bravery. To go against the firmly held beliefs of the masses requires discipline, fortitude, and incredible conviction …

As we are on the heels of Parkinson’s awareness month- I want to  encourage all women who live with PD on a daily basis to remember that their story is also my own. Thus, I am not unique in any fashion or form all I do is encourage other women to become empowered with knowledge and become self advocates of their own destiny and health care. There is great power in togetherness and standing unified in a cause for the betterment of all women and their health issues with PD. No longer do you as a woman with PD should face challenges alone unique to your gender since half of the population is of female gender.

Things to remember about PD in women –IMG_1982

  • Women tend to be diagnosed at least two years later
  • Hormones play a role – since early hysterectomy increases the risk of PD but also women who are menstruating have worse symptoms of PD during their menses and their period alternatively worsens due to having Parkinson’s
  • Women experience more dyskenisias than men; this could be due to increase sensitivity to side effects as most women are more sensitive to similar doses given to men but also because of the weight difference (more body fat in women- causing medications to linger longer in body)  and metabolism difference.
  • Women have more depression and men have more behavioral problems
  • Women although have less dementia then men they have worst quality of life overall. Perhaps, because they also have increased risk of strokes.

However, there is an increase in hope since women are beginning to bond and find ways to support one another, lift each other up and  advocate together for changes in the diagnosis and treatment of women with PD. For this reason we are working on getting a women support round table at this year’s WPC in Portland. Let me know if you are planning on going!!

Soon we will have flyers that you can share with others regarding  the issues women with PD face. Two sources already  exists – one is with http://www.pdf.org  and “life in balance” a newsletter for people & families living with PD provided by Parkinson’s support solutions (Azilect program) issue 1-2016 – http://www.parkinsonssupportsolutions.com ; 1-866-880-8582

 Join the team. Together we can #endParkinsons.