“It does not matter how Strong your Opinions are. if you don’t use your POWER for POSITIVE Change , you are indeed part of the problem.” ~ Coretta Scott King
Women’s Day dates to February 28th, 1909, on the advice of Theresa Malkiel. Theresa was the first American woman to rise the ranks from a factory worker to a leader of the socialist party. She was convinced that the only way to fight for women’s inequality was to band together. Over a century now, the same principle holds true.
Fifty years, since the inception of a global celebration to address women’s accomplishments, some of the challenges and inequalities faced by many women around the globe have not advanced as fast as we would like it to be particularly in healthcare.
This year’s UN theme is “DigitALL : Innovation and Technology for Gender Equity.” Post Pandemic, the use of technology has skyrocketed, especially in medicine. Case in point this week as I tried to take care of my husband’s and mothers’ medical needs including my own, I was not able to speak to a single person at first try while contacting the various healthcare providers offices, pharmacies, and insurance representatives. Despite multiple attempts in many cases I was only able to hear a digitized recording which directed me to the ‘patient portal’ never mind I may have neither accessible portal nor reliable internet. This got me thinking about what our true goal is. We are supposed to be empowering women and giving them tools to navigate their care in a manner to have greater access to care along with more resources. In theory digital technology is supposed to decrease disparities among groups of people and eliminate gender biases and improve inequalities. However, my personal observation and experience in caring for neurological patients is that the forced implementation of technology at medical institutions for instance while eliminating all other means of communication is alienating minority groups as well as the elderly, financially disabled and cognitively impaired patients. we know that about 40-50 % of patients with Parkinson’s can develop dementia.
We must not forget who it is we are trying to benefit and provide tools to overcome the challenge of being a single mom with a fixed income living with a progressive neurodegenerative disease for instance. We have to find innovative ways of engaging and teaching women around the globe in this case, how to use technology to serve as another tool for communication, access to health, and empowerment but NOT the only choice or means of engaging the community.
To be successful in using much of technology available one must have access to internet and know how to use it. I have several elderly close relatives who live alone and are otherwise independent. Yet, as many attempts have been made to incorporate into mainstream ways of accessing care, the challenges that have ensued can create an unnecessary burden and handicap when once there was none. Plus, circumventing these barriers and challenges of remotely facilitating supervision and care by a third party in a different city or state can lead to much agony and frustration as I have learned firsthand. Keep in mind that I am not only quite savvy as to how to navigate many situations especially in the healthcare system along with being extremely persistent yet frustration at times can hit the roof especially when considering my own disabilities. According to a report cited by the UN 37% of women don’t even have internet (I would venture to say the percentage is much higher than this). Although, women account for nearly half the population, it is estimated that 259 million fewer women have access to internet. Now think about the fact that women already have lower income, lower education and live longer than men especially in minority communities such as the Hispanic/Latin, we are perpetuating gender inequality and will continue to do so unless we intervene. Technology should not be an end all be all but rather should be a tool in the armamentarium to help people in this case women get support be it financial, physical, or psychological to live the best life possible despite having a chronic illness. Since women are less likely to even own a mobile device by at least 12% around the globe only 25% is estimated to be connected especially in underdeveloped areas.
2nd problem is that women outnumber men in significant neurodegenerative disease which can affect cognition such as Alzheimer’s (it is believed that more than half are women), 70% of those living with MS are women and roughly about 40-50% of PD are women. Further it is estimated that about 25 % of PD people living on Medicare are living in long term care facilities which we know don’t have access to digital technology commonly.
3rd problem we know that humans are social beings and that all of us do better when we are mentally and physically active but not just random activities but those with meaningful connections like having social interactions so as we become more digitally dependent we are becoming even more isolated which does not help anyone living with neurological diseases like Parkinson’s which in women has even more negative impact because of tendency to have more depression, challenging the dogma of ‘first do no harm!’
Finally, as we face the last frontier in the treatment and care of women in Parkinson’s and try to bring equality, we must continue to appeal to healthcare professionals, public policy makers, Technology innovators and scientists and women of all walks of life to first band together to break down barriers; but also to remain steadfast as the guardians of humanity or we as women will continue to suffer the disparities. For it is only the combination of knowledge infused with the human touch that the true art of healing results and the only one capable of empowering change and decreasing the gap in women’s health.
” Porque si callas absolutamente en este tiempo, respiro y liberación vendrá de alguna otra parte…”
Esther 4:14
Hola. Mi hombre es María pero todos me conocen como “La Diva del Parkinson” por los libros que he escrito sobre temas de mujeres que viven con la enfermedad. Ademas, mis amigos íntimos y familiars saben que soy una verdadera Diva en lo profundo de mi ser. Me fascina todo sobre la moda pero también empezar estilos nuevos por eso mi gran lema es como dijera Marilyn Monroe: “ dale a una mujer los zapatos apropiados (para lo que desea ser) y conquistara el mundo”
Porque toda mujer desempeña varios papeles a la vez desde ser madre, esposa, compañera, trabajadora laboral y cuidadora. Pero cuando enfermamos por todas las responsabilidades que temenos nos olvidamos de cuidar de nosotras mismas. Desafortunadamente a veces hasta nos olvidamos de que somos mujeres primero. Esta es una de las razones por la cual he dedicado gran parte de mi vida al empoderamiento de las mujeres especialmente aquellas de nosotras que vivimos con el Parkinson Algo tan simple como el uso de un lápiz labial, como en mi caso siempre cuando sea un color rojo, puede alentarnos para seguir luchando un día o una hora más. Lo importante es aprender a utilizar no solo nuestra belleza interior sino también los talentos que son únicos para cada una de nosotras. En sí sabiendo nuestros límites y lo que queremos para nuestras vidas utilizando las lecciónes del pasado podemos convertirlas en herramientas muy valiosas para combatir los síntomas del presente.
Lo que quiero decir con esto es que como mujer tendemos a ver y experimentar la vida completamente diferente comparado con los varones de la misma edad que padecen de una misma enfermedad pero también presentamos con un cuadro clínico distinto y tenenos diferentes reacciónes (por ejemplo más discinesias) a los mismos medicamentos. A pesar de esto, nosotras tenenos de nuestro lado el poder de la fuerza interna algo que nadie puede quitarnos. No estamos solas en esta travesía de la vida. Unidas podemos vencer la discriminación y tardanza de un diagnóstico correcto de Parkinson porque apesar de que estamos en pleno siglo XXI seguimos siendo victimas de prejuicios y de nociones preconcevidas. Por ejemplo, ‘el Parkinson no occure a edad joven;’ ‘si no hay temblores predominantes no existe un diagnóstico de Parkinson,’ ‘no hay diferencias en la presentación de la enfermedad entre los varones y las hembras,’ o mi favorito ‘las hormonas no influyen en el tratamiento o en la presentación de los síntomas.’ Todos estos mitos debemos romper si queremos que haya igualdad en el diagnóstico y tratamiento de la mujer con Parkinson. Por eso estoy muy contenta de comentarles que he unido mis fuerzas con tres grandes mujeres españolas (Francisca ‘Paqui’, Laura y Ana) que fueron al igual que yo diagnosticadas a temprana edad. Hoy luchan para levanter conciencia sobre esta enfermedad en las mujeres.
Hemos empezado una reacción en cadena…y el tiempo es hoy para levantar conciencia sobre la salud de la mujer que lucha contra el parkinon. Así es que las invito a ponerse sus calzados, sombreros, o prendas favoritasy se unan a esta causa porque juntas todas las mujeres con parkinson podremos cambiar el futuro y retomar el control de la enfermedad y nuestras vidas.
Empezando el mes de enero de 2021 se emprendera la campaña de #mujeryparkinson #womenandPD
Chicas, les pido que porfavor se unan a esta campaña mandando textos, y poniendo fotos de ustedes junto a una frase de lo que significa ser mujer con Parkinson y usen el hastag #womenandPD #mujeryparkinson.
Porque como escribió Isabel Allende, “Nosotras somos las narradoras de nuestras propias vidas …” así que depende de nosotras que es lo que queremos contar y como queremos cambiar el mundo.
“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!)
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
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
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.
“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.
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.
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.
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!
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
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.
“I have fought the good fight, I have finished the race- I have kept theFAITH!”
~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 ACCEPTour 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 THROUGHdespite 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 faitheven 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
Those of you who have been following my blogs for a while and have read my “Parkinson’sDiva,” 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 ONEPerfect 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.
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)- Malala
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.
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 –
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
“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.
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.
Parkinson's Diva 