Women’s Health & Sexuality: By Maria De Leon

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“It’s not the size of the boat but the motion in the ocean…”

(Image by Ross Webb)

There I was, in the middle of a crowed classroom, addressing students and faculty alike about human sexuality  and talking about “orgasms” and “premature ejaculation,” with not as much as a wave of discomfort when it suddenly dawn on me – I had somehow morphed into Dr. Ruth (Westheimer)- iconic sexologist of the 80’s. I chuckled inside a bit as I continued lecturing. If someone one had told me that a shy, introverted young girl with “rose-colored” eye balls  and little world experience would become this carefree, self-confident, mature woman expounding on the issues of sexuality, I would have died laughing in utter disbelief.

Nevertheless, with age along with living with a chronic illness has given me a new found freedom one and  voice to help women of all ages deal with chronic illnesses particularly those with chronic neurological diseases such as PD. Having treated many women over the years as well as living with PD myself, over the last ten years, has made me realize the need for awareness and much needed dialogue in this vital aspect of  every woman’s life. because sadly until only a few decades ago, there was a misconception regarding women’s sexuality which  was promoted by men, I am sure ( some sort of ploy to keep women under control),  that women have a decrease libido compared to men. This of course is entirely false, although as in men there are some women who have greater sex drive than others.

Yet, despite the fact that when chronic illness strikes sex and intimacy are unwittingly place in the back burner for many of us, sexual expression and sexuality is still at the top of our lists. this is one of the factors we deem important when we think of quality of life. However,  it seems to me that for centuries women have gotten the short end of the deal in this department thus going on for years suffering both physically and emotionally from lack of  appropriate care.

Here are some tips to become a SEX Goddess again ( at least in our own minds!)Rita Hayworth 1941:

First, it is important to recognize that both men and women suffer from sexual problems when it comes to chronic disease like Parkinson’s. Although, some of the issues are inherently different we share many things in common such as fatigue, depression, hormonal changes, lack of energy, medication side effects, stress and anxiety all of which can put a kibosh to our libido. Therefore, it is imperative that you feel free to discuss these issues with your physician as soon as they arise and not make it a “door -effect” as I like to call it… I.E. “oh by the way doctor, I have this problem when I have intercourse,” as you are walking out the door of the examining room. of course we must also remember that like the infamous “birds and the bees” sexual prowess’s can be wide and varied depending on partner, experience (history of trauma, or abuse), culture, religion, etc.

For us women the reasons for sexual dysfunction- this refers to

  • lack or loss of sexual desire
  • anxiety during intercourse- muscle stiffness, loss of bladder control
  • pain during intercourse- recurrent urinary infections
  • dryness- this is one of the most common problems from autonomic dysfunction (decrease blood flow) ; hormonal changes
  • trouble achieving orgasm
  • vaginismus- muscle contract involuntarily preventing penetration

How to prevent Parkinson’s from hijacking your libido and sexual desire:

Having sexual problems may feel like an insurmountable task to overcome thus may be tempted to throw in the towel and give up and give into disease.  however, with lots of love, patience, and persistence you and your partner may begin to enjoy a healthy sexual interaction that does not always mean sexual intercourse in order to be satisfying and fulfilling. Sometimes SEX ( BIG and BOLD) is just s e x (barely present) yet equally rewarding.

Since vaginal dryness is a HUGE issue- try lubricants ( water based best) don’t be afraid to stop and use more if needed. Hormonal replacement topical or oral can also go a long way for this as well as help with some of the loss of libido issues.

Of course fatigue and poor energy can be a disastrous problem when trying to be at maximal arousal- thus try different times of the day or night when you are most awake and energetic- I guarantee you will sleep better and burn off a few calories in the process.

Incontinence- many of us with PD especially as disease advances may find ourselves dealing with this pesky and extremely embarrassing problem. Don’t hide or avoid intimacy altogether, instead talk to your partner and your doctor. Padding the bed with some towels or disposable urine pads like the ones used in hospital, which can be purchased at a medical supply store, can help ease the discomfort and allow you to relax.

Don’t neglect your relationship, find other ways to be intimate. I love when my husband massages my back especially since it is so stiff that I almost appreciate that as much or more depending on my mood than intercourse. spend time cuddling, or touching each other, bathing together. a single touch (hug) of 7-8 seconds can release as much natural neurotransmitters ( serotonin, dopamine, oxytocin) to make you happy.

Above all make time for one another aside from “caregiver/partner” and “patient.” This of course a lot of communication, which has to happen daily.

When all else fails or in conjunction to above  ( this will give best outcome) along with medications to help treat specific problems like infections, dryness, anxiety, incontinence, etc.; there are alternative treatments such as behavioral therapy for individuals and couples, sex therapy, acupuncture, yoga and meditation to name a few.

So go ahead embrace your sexuality and you like me may want to say

“I want it all!

I believe in love, lust, SEX, and romance

I don’t want everything to add up in perfectly neat equation

I want mess and chaos

I want someone to go crazy out of his mind for me

I want to feel passion, heat and madness.

I want it ALL!” (Mirror has two faces)

copyright-2016

all rights reserved – Maria De Leon MD

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

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.

 

copyright-2016

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

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.
 

 

 

PD Women Initiative Challenging Conventional Wisdom: by Maria De Leon

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“The happiest people I have known are those that gave themselves no concern about their own souls, but did their utmost to mitigate the miseries of others.” Elizabeth C. Stanton

The other day I was watching the movie titled “Suffragette starring Meryl Steep about the women’s moment for equality in the late 1800’s in London. Seeing all the atrocities committed against women made me think of today’s world and our own women initiative in the Parkinson’s community. For years, women fought to obtain the right to be heard, to be law makers, to be leaders whose voices were meant to be heard above the roar of the crowd. Yet, sometimes I wonder if we have forgotten the sacrifices of those women that came before us? it seems some of us have settled into a quasi state of ‘laissez-faire’ allowing the same atrocities and women discrimination to go on around in and out of our communities. it saddens me to realize that even after a century since women obtained ‘equality,’ we are still considered or at least treated as second class citizens in many realms of society. Unfortunately, much to my chagrin one of these areas lies within my realm of expertise-Parkinson’s disease.

However, recently I have begun to see a stir in the women with PD community in attempting to once again challenge preconceived notions and decrease the disparity that exists in treatment and  general care when it comes to women’s issues. Although, we have gained the right to be heard as women, we still fall short of receiving the same type of treatment as our male counterparts with PD. Women with PD take longer to get diagnosed, see fewer MDS specialists and even when they do they are not offered the same treatment – fewer times get offered the standard treatment of care- DBS-(deep brain stimulation) compared to men with PD. Even when both genders present with the same symptoms such as behavioral problems- independent of the type “men were more likely to receive antipsychotics while women receive antidepressants, according to a study looking at behavioral differences in PD by gender.

However, the longer, I live with PD and work closely with those afflicted by this chronic progressive neurodegenerative illness and their families… I feel a great power surging among the women with Parkinson’s. The  women with PD initiative like the suffragette movement is starting a snowball effect among all women of all  neurological  and medical diseases not just PD. Like a snowball rolling down hill it is destined only to gain strength the further it rolls. The courageous women with PD and their families are fighting their own battle like in days of old to uphold the right to be heard to fight for equality of health care for the things that matter most to all of us women. I am proud to stand in the ranks arm to arm with the many PD women who refuse to be ignored and ostracized and are taking charge of their own lives.

Our purpose is to live and live well with a devastating illness yet be able to do it with such gusto that PD appears to others like a mere inconvenience because we are strong and capable women of caring for our families, children and our parents. But as such strong willed women who take courage and comfort from the women who have gone before us demand our given right to be heard thus be able to receive the same standard of care.

It is in such capacity that we women with PD are trying to make waves and change the status quo once more challenging conventional wisdom regarding women’s issues in PD. So, the other day I was glad to have had the honor and pleasure of meeting with other fabulous woman in the battle against PD across the country in California thanks to social media. We had the chance to laugh and share with one another our concerns, issues and challenges with this so called Parkinson’s disease. We got to discuss the Parkinson’s diva -a women’s guide to Parkinson’s disease book.We vowed not only to uplift one another but to spread awareness in the women’s PD community as well as in the health community advocating for a holistic approach to women’s issues. Thank you to Debbie, Darcy, and Sharon and all the other great women for allowing me into your home and keep up the great job you are doing in your community.

sources:

*Hubert H. Fernandez, MD, †‡Kate L. Lapane, PhD, *‡Brian R. Ott, MD, and *Joseph H. Friedman, MD: (2000) “Gender Differences in the Frequency and Treatment of Behavior Problems in Parkinson’s Disease.” Movement Disorders.15(3). pp. 490–496.

 

Queen for a day! By Maria De Leon

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The other day mom and I went out for a stroll and decided to stop and get something to eat at one of the local restaurants for brunch. As we walked in to a packed restaurant, I noticed everyone was wearing a tiara. One lovely lady stood out as more royally than the rest, she had a larger crown and had a purple robe on- she Must be the Queen I said to myself under my breath. as we were being escorted to the only table available in the middle of the room full of tiara wearing women I suddenly felt naked and out of place without mine. I leaned over and whispered to mom, “if I had known it was wear your crown day, I would have brought mine. ”  But then I remembered that a Diva  does not need a tiara to feel special, she is unique and special all in her own way. Nevertheless, I was thrilled to see a room full of women who enjoyed life as much as I did and wanted to know what this event was all about? Any club where you get to go out in public and wear a tiara is just my  kind of club as long as it empowers women.

Mom and I had a great time wearing our own invisible crowns sitting among all the other divas who were sipping mimosas and laughing out-loud just as we were. Of course as soon as I got home I had to find out who these women were. I discovered to my great astonishment that we had lots in common, how I had never heard of the Pulpwood Queen Book Club I could not believe.

Turns out this was a nation wide phenomena of a women’s book club having their girlfriends weekend in my own home town which only made sense since the group was founded not far from here in 2000 by Kathy Patrick who now runs “Beauty & the Book”- to depict that reading is always in style. so like me, they too believe that knowledge is not only powerful but sexy and attractive and a way for women to conquer anything they put their minds to it even PD as long as its done with  distinction and style.

What I love about this group especially its founder is their willingness to hear the voice of women and help them share their message across the country while getting a nice coiffeur. You simply can’t beat that.

I then thought that all you beautiful Parkinson’s Divas out there and I should start acting more like Queens even if for a day! Not in the nasty kind of way, demanding and having everyone do everything for you while you spend all day at spa getting massages, along with manicures & pedicures. Although, this may be a very nice treat once in a while to help relieve some of the stress of living with PD or caring for someone with Parkinson’s disease. Rather learn to walk with class and confidence as a true diva/queen should to show PD who is really in control.

Queens are always

  • polite and kind towards others. Sometimes hard to do especially when we are in pain. take a deep breath and count to 10.
  • they enjoy and feel great pride and self-worth in helping those in need, especially other women with PD.
  • learn to deal with the mundane and not so fun stuff of our disease with pizzazz.
  • think like a queen – only positive thoughts- we are after all the sum of our thoughts. you have been through a lot in your life and you are still standing, so a little PD will not topple you over.
  • practice your smile- makes you more beautiful and exercises those facial muscles as well.
  • always look dashing- ready for any occasion- don’t forget your favorite lipstick or scarf, etc.
  • finally remember that what ever set backs you may have it is only a stepping stone for greater and stronger victories.

Finally, remember it is the Queen who protects the king (and his house) in the game of chess as in real life!!

In the meantime, working on spreading the word on women’s issues in PD through a women’s book club.

 

Woman to Woman: How to be a Successful Parkinson’s Mentor Even When You Think You Have Nothing Else to Give. By Dr. De Leon

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photoDo I Have the stuff mentors are made off?

First, when you are diagnosed with a chronic illness like Sacha and I have as countless other women out there who have been given similar prognosis have wondered at one time or another whether they still had something to teach? When an illness such as Parkinson’s disease first strikes invariably we feel at a loss and maybe a bit like the wind has been taken out of our sails. Some perhaps have even felt like their best years were behind and their dreams were now over so how could I imagine asking anyone to become a mentor?

Well, I want you to close your eyes and think of someone who was there for you at some point in your life when you truly needed a friend or some guidance-are you smiling now? I bet that person brings all kinds of warm fuzzy feelings. Now, you are really thinking, I REALLY don’t have the RIGHT stuff! But, when you stop to think about it that person that took time to see you through the tough times and encouraged you to grow and develop your talents was not a super human being – wonder woman with a cape and truth lasso leaping tall buildings performing heroic deeds although they might have seemed like that to you. Instead these wonderful creatures we learned to lean on, depend on, trust, and bring into the fold of our families started as mentors giving the best part of themselves in such a way that they helped us become the very best we could be. We all have unique talents and skills which could be used to build and foster others talents. After my diagnosis, I thought I would never be able to work with Parkinson’s patients again and ten years later I am more deeply involved in the lives of so many people with PD throughout the world in a level that I never would have thought possible. Because I was fortunate to have many great female role models, one of whom continues to play a vital role in my life even after the change in career and onset of PD that I feel compelled to emulate her (Dr. Mya Schiess) as a great woman healer and mentor.

Remember, the best way to succeed in life and be truly happy is to do something meaningful for another human being- this is a biblical principle.

When you become involved in someone else’s well- being you suddenly begin to heal as well. Give it a shot. Don’t worry about being qualified. No one is ever truly qualified until they begin the journey. All it takes is a genuine desire to help others.

Still not certain?

Can you answer any of the following?

  • I have fallen, failed and been hurt
  • I have endured disappointments
  • I want a better world for my children
  • I too live with a chronic illness and feel a need to help those with similar plight

If you answered YES to any of these you have the STUFF to be a Mentor…me

 

What is the role of a Mentor?

Now, that you have seen how truly gifted you are and how you may begin to feel better about your lot in life through mentoring, you are still wondering if you have what it takes. After all, you don’t have much energy these days and sometimes you feel like all you do is go to the doctor or take care of others already being a mom, a wife, and a million other tittles imposed by those around you.

I would suggest start with practical things that would benefit someone with your same plight or interests. For instance, if you have another woman you are trying to help (can be someone older or younger) may offer her a ride to the store or doctor if she needs it and your schedule allows it (you are already going in that direction or to the same place). This way you are being of assistance to another and not costing you much time or effort. Yet, the sentiment is extraordinarily regarded. So be a servant.

Sometimes, what we really need is for someone to hear us. This is especially truly when we are first given bad news. Use the feelings that you felt and allow yourself to empathize and sympathize for some else in those same shoes. We don’t really expect anyone to solve all of our problems or cure our illness, but a shoulder to cry on is a much appreciated and highly valued thing. This simple act of listening and encouraging someone is typically the first step to a long meaningful relationship returning confidence and worth to the person in need. You can do this over the phone or skype but much better and more effective in person. Be a listener.

At other times, it may be required that you help someone make important life decisions based on your experience and their abilities – a great deal of finesse is required as well as love for the person you are helping for you will not be merely dispensing advice but actual counsel with purpose of making their lives better. A wise counselor always listens more than she talks. Use open ended questions. Be a Counselor.

Finally, you have been where your friend has not and know the perils and victories. Lead the path with love allowing her to make her own decisions. You cannot impose or insist that they do things your way to arrive at the same destination. They must try out things for themselves feeling what is right for them so they can be successful. Learning to find their own unique voice, talent or skill to share with the world that will make them shine just as you shine despite your illness. Sacha’s talent is art, mine is still teaching. Be a Guide.

AS we begin to discover what makes us different in the world of PD from our male counterparts, we should also begin to build up one another as women encouraging, lifting, educating, so that the women with PD that come behind us can be the next leaders, counselors, advocates, guides, researchers and friends for the next generation of women with PD who may even unlock the key to the CURE!

Remember ” A woman is like a tea bag- you never know how STRONG she is until she gets in hot water.” Eleanor Roosevelt

@copyright 2015

all rights reserved by Maria De Leon

New Year’s Resolutions for a Life with PD worth Living!: By Maria De Leon

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Happy new year to all my friends, family, and loved ones! I would like to thank all of you first of all for choosing to walk with me in this PD journey through life. Having wonderful friends such as you by my side is what life is all about. As we commence a brand new year full of possibilities in which every page is waiting to be written, I would like to leave you with a few thoughts to make your journey with Parkinson’s, or whatever chronic illness, or struggle you are facing in life a much richer and fuller experience.  My learning after nearly a half of century of living can be summed up in five parts.

5 things I want us to keep in mind as we make our mark through the New Year.

  • Stand still
  • Listen
  • Learn
  • Have Faith
  • Give back

 

These things I have observed to be the fundamental elements for a life worth living. Although a few skeptics along the road have question my positive attitude and optimism in life as well as my experience with Parkinson’s. A few people especially women have told me that I must have led such a ‘charmed’ and ‘happy’ life to be so full of hope and optimism. As I nearly chocked on the caramel I was chewing on, I thought “charming” and lucky was not a word I would have ever used to describe my life. For dear readers, I have dealt with my share of pain and disappointments and seen the ugly side of human nature yet I choose to believe that everyone has something good in them and everyone deserves a second chance.

First, I was born with a severe birth defect which according to the doctors I was NEVER going to walk so I spent the first year of my life in all kinds of casts and contraptions. Yet thanks to the love of my mom, grandfather and the grace of God, the right doctor was found to correct my problem. Ever since I started walking I have not stop and don’t intent this PD to stop me either!

I also have had multiple cancers on top of the early onset Parkinson’s diagnosis which was an irony in itself.  I had a hard pregnancy making me unable to bear more than one child, yet the joy of being a mom of that one precious child has made up for all the pain. I lost several loved ones within a two year span in which the two most precious beings in my life were included. I tended to thousands of Parkinson’s patients through the years many of whom I watch die and have wept at their bed sides along with their families. I wept even harder at my dad’s bedside when he was suddenly taken ill with cancer.

Even though these are but a few of the struggles I have faced in my life, they serve witness to the fact that like you I too have had a life full of challenges of ups and downs. Sometimes life led me to dark unfamiliar places. I have struggled physically and emotionally with gut wrenching burdens which have stretched me to my limits and then pushed me further still. But, through it all I have learned that without these low valleys and dark places, I would not have found my strength, courage, and faith nor enjoyed the peaks and mountain tops as much. Each and every one of the experiences in my life has served to shape me into the woman I am today who is able to write to you and share her experiences with you to help guide your path with this chronic illness and give you hope and a ray of light for the dark days ahead.

As I recall the words of that one woman who sneered at me as she was perusing my book looking at me sideways exclaiming “what gives you the authority to write about PD?” Simply put: MY ENTIRE LIFE JOURNEY with PD! So I am extremely glad I had the courage, thanks to some of those people who have gone from my life too soon, to write “Parkinson’s Diva ” Perhaps someone will find laughter and love once more in their life just as I have despite having and living with  Parkinson’s disease. If only one person has felt better because of my book, I have achieved my goal.  This lady unfortunately was only seeing in me the end product …a woman who has finally learned to accept herself just as she is flaws and all; who has learned patience thanks to PD, when you move like molasses you have no other choice!diva pic

Dear friends, I hope this year you work on being happy with yourself first before making anyone one else happy. This starts with being able to stand alone in solitude and fine tune your hearing to that small still voice inside of you, for mine has never let me down.

Learn to listen– I often quiet myself by first listening to my own breathing and heart beat until they are in sink and quiet. Take time to stand still at least once a day and replenish your thoughts and your energy, Then learn to listen to everything around you like the laughter of your kids, the rustle of the leaves, the whistle of the wind, the sound of the waves crashing on the beach, the silence after the snow has fallen. Particularly listen to other women. I have women friends from all walks of life and all ages because everyone has a story to tell that is powerful and unique and every one of these precious women has accomplished many feats most by the time they reach early adulthood. Make sure you absorb some of their goodness, soak in their wisdom for it is absolutely priceless. I had the absolute pleasure and privilege this past year of meeting and working with some of the most wonderful women both through the Christian women’s Corp & the Women & PD Initiative. Both had so much knowledge and wisdom to impart it was amazing.

Learn from these women, from your parents, your friends, and from anyone you come in contact with in your journey this year, for they too have a story and a lesson to share with you if you listen. Learn especially from those who love you and particularly from those who don’t. Learn to walk in someone else’s shoes as well as to see life through someone else’s eyes. Learn that in order to make a difference you must first take a chance.

Most things that were invented had to be thought up by someone who had to believe in his or her dreams even though no one else could see the same vision; plus think about it they had to have some kind of necessity, be in a low point in their life or be in the dark otherwise there would be no need to grow or change or invent anything. So with this comes Faith that things will work out for the best- that the darkness serves a purpose to hone our night vision. With faith comes hope for a better, happier tomorrow so don’t lose faith!

Finally you have to be willing to give back to others. Funny thing is that in order to grow and develop and actually enjoy life we must stop thinking about ourselves and actually think about others needs first. So this year I want you guys to renew your passions or find new passions, redefine your world, expand your horizons dream bigger dreams, have higher aspirations, broaden your visions, and  stand up for something worth fighting for like helping those less fortune than you in your PD community.

Provide caregivers a helping hand, fight in behalf of the kids with PD mom’s, aid the moms living with PD. Go ahead and confront the things that scare you such as living with a chronic illness and embrace it to the fullest. Make a difference in someone’s life, you can do this by joining me in being part of Women & PD initiative as a mentor, teacher, counselor, and friend. If you follow these guidelines throughout the year, you will discover as I have that by getting involved and truly listening to others and yourself you will change your own life. You will also be replacing laughter for the many heartaches as I have done many of which nearly broke me. However, now I have joys and rainbows where storms once were punctuated by many friends smiling at me along the way.

This 2016, I admonish you all to leave your comfort zone and take a leap of faith by doing that which scares you…interestingly once upon a time I was terrified of public speaking until I was forced to give a commencement speech in front of 1000 plus individuals. Now I do public speaking for a living. Go ahead I challenge you to Join me in me in daring to be yourself and a true “diva”  or “divo” (one that does extraordinary things with their natural talents) living a life with Parkinson’s disease worth living.
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