“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.
“Conquering others takes force, conquering ourselves is true strength.”
~ Laozi
Here we are nearly 6 months since Covid- 19 pandemic took over our lives and many of us have begun to quiver and shake like an orphan left out on a cold winter’s night. For good reason, we have felt ourselves being shaken to our core with the events that have taken place this year.
To you I say, stay strong! Do not let your worries rob you of your peace of mind. I have learned that life is not only unpredictable; but also, that some of the sweetest moments in life usually occur amid our struggles. If it were not for the bad times, we would never appreciate the good things in our lives nor would we ever grow as individuals. Had my father never had cancer I would probably not have gotten the opportunity to reconnect with him as an adult- moments I will forever cherish.
Before, I became ill I thought I had everything- a wonderful family, a nice home, and a great job. Yet, there was a longing for something lost and not all together tangible
Thus, when I became disabled and unable to maintain my previous profession I was at a loss. Forced to stay at home to deal with my thoughts, disappointments and failing health was no walk in the park. But as the days set in, I began to focus on what was right about by life rather than on the negative aspects which gave me new strength and a reason to persevere.
In trying to conquer a disease, I rediscovered myself, my daughter my family and found joy again in new things. The key to the change was attitude- nothing in my life had really changed if anything my life was worse because I was now carrying a Parkinson’s disease diagnosis.
How do we fear less and live more?
The answers are all within your reach.
As I see persons with Parkinson’s and others become overwhelmed with fear – I first remind them that these feelings are unavoidable and to be expected. But just like the corona virus was unforeseen, so are the real threats to our livelihood. Being anxious about something that could happened will neither prevent a catastrophe nor help us worry less. Yet, we can do things to minimize the impact it has on our lives and well-being.
First, we must be vigilant of our emotions. Are the anxieties we are facing genuine such as loss of a job or a spouse? Are they related to medication intake or wearing off? (must remember to keep a journal of symptoms) one thing I found that helped me tremendously was to do a 5-minute video of my day- good bad, on /off’s, making sure to document how these made you feel. You can do this at any time during the day. I found it easier to do at night since that is the time I am usually at my best.
Second, keep a gratitude journal – write down even the slightest most insignificant thing- start by thanking God (being grateful) that you are still alive. Put them in a jar or keep a list on the refrigerator door. At the end of the week you can tally up all your blessings and celebrate with a piece of chocolate, cake (preferably if it is chocolate) or whatever your favorite thing or food is.
I suppose that my biggest drive is GOD and family. During these times of quarantine, I often think back to my childhood in Mexico. Although, I guess we were considered middle class, life there, as in many second and third world countries, is a hard one. There were no commodities such as air condition in the summer, and no heaters in winter. Forget drinking a nice cold drink because there was no ice except if you bought it at the ice warehouse by the block and by the time you got home in the heat you had lost nearly half. Thus, during the hottest part of the day, we would all gather in grandmas’ room to read, play cards, watch some t.v, but mostly talk and tell stories.
Things are much different here in the USA. Yet, during this pandemic when we are forced to be shut in and keep social distancing, we can still have some of the same connections and interactions thanks to the advances of technology. We should try to spend at least an hour a day talking to a close friend, or loved one, telling stories, sharing thoughts fears, doing art therapy together or simply finding a way to laugh. (Be creative)
Third, we must be empowered from within – the scariest and most difficult thing to do when one is scared is NOTHING. Learn to quiet your mind and thoughts this will help decrease the pressure. Avoid watching the news if that stresses you – rather watch a favorite movie or read a fine book. When I am feeling tense, I seek a dark quiet place to become still- my bedroom is my favorite place. You become empowered when you can take control of your emotions and fears. Never disregard them but do not be ruled by them either. Try to find some alone time during the day to hear yourself think. When overcome with emotion and worry take note of your breathing and heart rate and concentrate on getting them in sync with one another.
From personal experience staying still for a few minutes away from all the noise is the best way to overcome the worries and begin the path to a true warrior.
Finally, have a contingency plan should things go sideways. Hope for the best, plan for the worst. Although, life may still find a way of throwing us a curve ball when it does it will not be such a shock. For instance, have everything ready medication list, doctors’ names, diagnosis, wills, power of attorney, a friend or relative to call should you get sick and need hospitalization.
Remember -you are not alone in this fight. Worrying is a part of being human. Although, we cannot always escape fear we can do something to deal with its close relative – anxiety/worry. It is all about our attitude – are we a glass half empty or half full type of person?
Do not waste your energy on something that might not even take place and spend your time on preparing on how to deal with the things that could occur. Not forgetting that a bit of prayer goes a long way. Then you can commence to live more with less worries. Learn to say as King David, one of history’s greatest warriors, did “even though I walk through the valley of shadow of death, I will fear no evil: for You (God) are with me.”{Psalm 23:4}
@copyright2020
All rights reserved by Maria De Leon (Parkinson’s Diva)
“Rain drops keep fallin’ on my head…but i am free nothin’ is worrying me…” ~B.J. Thomas
So here we umpteenth day of self-imposed quarantine, around the world the war on covid-19 virus rages on each time the danger getting closer and closer to home. For me, like many of my colleagues who are in the front line the threat is more imminent since my spouse is one of those physicians. Although, we are not in a hot spot just in the last 3 days we have seen several cases triple with 2 deaths in the last 24 hours and for a small town that is huge. Nevertheless, we cannot live in fear and we must go on with our lives as best we can try to survive until the end of this epidemic.
Although, our world will never be same since so many families around the world have been afflicted and overcome with grief, sickness, and loss of jobs nothing lasts forever and this too shall pass. As the Bible says there is a season for everything under the sun. I, being the eternal optimist, choose to focus on the positive things of this situation which undeniably maybe a lot easier for me to do than for some. Nevertheless, I want all of you to try to find something positive in the life you are living now.
I guess that for me being in isolation or being forced to stay home and not being able to run errands, go shopping, meet with friends, travel, or go to the movies at will has become a way of life since Parkinson’s and lupus came to live with me. Yet, I can say that my life although different and challenging at times has not been any less fulfilling or exciting; for you see I have had plenty of time to reinvent my life. Those of you who live with a chronic illness have done the same. We are pros at this staying home and getting things done even when we are physically unable to do for ourselves. So, the notion of being forced to stay indoors or home bound should not frighten anyone of us!
what can I do to stay calm and relaxed?
Yes, is true that we as chronically ill people are more predisposed to getting infections and complications but trust me I challenge anyone to tell me they have a more compromised immune system than me – except for a hand full of people I know not many others can claim this. Besides having 3 long term systemic immunological and neurological illnesses, I have had several cancers so a slight side way look from any bug puts me down for months at a time – I don’t want to imagine what a nasty corona virus (although love the name). But on the plus side, for those of us who have lupus already take the medicine that might contribute to having less severe symptoms and many of us with PD take amantadine (Symmetrel). Although, not a drug that has been looked at during this epidemic- it was this drug that helped people a century ago during the Spanish Flu to recover.
Okay, so we have the stamina to endure long isolation, we potentially have the right medicines to help decrease symptoms- what else do we worry about boredom? Anxiety? Sedentary lifestyle, Lack of sleep? Not seeing friends or family, not seeing doctors?
Activities to help with PD and maintaining mental well being
First, no one should ever get bored especially today in the age of technology. I am personally cherishing the quietness of it all allowing me to reminisce of the times of my childhood and youth growing up in a small sleepy town on the other side of the border. I had long ago made a comment that we needed to reincorporate siesta time. Not necessarily for sleep but rather for a time of tranquility, rest and relaxation all of which is needed for our brain, body and mind to function better. Not having much to do in my formative years in the way of watching TV, talking to friends on phone, we would spend time socializing with other family members, playing games, reading, telling stories learning new things from previous generations like baking ( i even baked a pineapple pie the other night) or making paper mache flowers or making pinatas. Time was spent and lessons and skills learned in a fun way.
Now, that I have the pleasure of having 3 generations reunited under one roof, I use these same techniques as my grandparents did with me. We talk a lot more around meals, we prepare meals together, we play games, and watch shows together and yes, we take a siesta in the afternoon when everyone does there own thing for a while in a quiet cool (preferably dark) room. Unlike, in my childhood when there was no central air or ceiling fans – laying down in the coolest usually darkest room of the house was a necessity. We don’t in the USA have to worry about being too hot or too cold for the most part. We don’t have to worry about the gas tank going out in the middle of a meal and have to struggle to replace just to finish cooking, nor have to collect water daily just to make it through the afternoon and always shower with the coldest iciest water in the world- I would literally get pneumonia now if I had to do this.
Yes, we still hunt for toilet paper but at least is all white and the majority is soft not like sandpaper of my youth. No change has occurred in my fight these days with the virus so reminiscent of my childhood when I was sent to fetch a quart of milk at the supermarket and get a peso each of eggs, tortillas, meat and sodas with no ice just for lunch. So although at present many grocery store are imposing limits on quantity of certain items like toilet paper, meats and water bottles one can purchased we are soon to go back to old ways when this is over but our friends and loved ones around the world this is a way of life for them. So, we should not be too haste to get mad or pass judgement because even when it’s difficult is worse in other part s of the world. Think on this and be grateful. Trust me, I am as spoil as the next person. I love my Dasani water which I keep by my side especially when on the road. However, I am now making a more concerted effort to drink more from the faucet which only requires a trip to the kitchen.
Due to my husband’s occupation, there is a slightly more worry about the virus coming into our home. But we can’t stop living because of the present circumstances. If we can’t change our conditions, we must change our attitude and if we don’t like looking down where we are look up to the heavens instead. Heaven is where our aid will come to rescue us from our pain and all that ails us. But if fear suddenly apprehends you don’t be afraid to talk to God, He is closer than you think. Believe me he wants us to tell him the good and the bad. After all, He already knows ALL. He, like a parent, want for His children to confide in Him and ask for help.
In conclusion…
As the number of people affected by virus continue to rise, my family and I are enjoying more quality time, learning new things, sharing with our friends via social media platforms like zoom, Facebook, and Skype. We are playing games all sorts which triggers much harmony and laughter which is another great way to boost our immune systems. Eating healthier 3 wholesome meals a day also helps us stay healthier. and thanks to technology we are more connected to our specialist- all good things. But don’t forget to get dressed and showered daily. wear your favorite lounge clothes or comfy clothes and do change in am and for bed. use time to do things always wanted or needed to do like read novel or tackle closet- I cleaned mine out- yay! doing these activities not only keeps us busy but also gives us a sense of accomplishment and purpose. Plus having goals allows us to keep track of time.
@copyright 2020
all rights reserved by Maria De Leon MD ( Parkinson’s Diva)
With everything going on around our communities and the constant media coverage of the pandemic has caused many of you anxiety while others to feel overwhelmed, stuck and out of control. These feelings might be compounded if stuck at home alone, have children to home-school, are elderly, live in facilities or closed quarters and/ or have other health commodities like me. As I have spoken to many Parkinson’s groups and individuals in the last couple of days, I was reminded of my page motto “being secure because there is hope,” according to the book of Job. Yet, it is precisely this man from the old testament who lost everything and suffered immensely without cause as we are now that will serve as a source of comfort and inspiration for our lives amid our anxieties, confusion, uncertainties, frustration and anger.
“Out of suffering have emerged the greatest souls, and the most massive characters are seared with scars.” ~ Khalil Gibran
First, pain is relative– for as long as we all have lived in this world, we all have suffered in one form or another of this I am certain. Some seasons of pain can last longer or are during times you thought you could not endure. You might have had great losses, lost a job, lost your health, lost a loved one, a child, a spouse or a breast. Yet, here we are again in another season of crisis. (it is good to remember that as long as we are alive – trouble will find us. It is a part of life).
Some might ask – is this fair? Why is it happening to me/us?
Remind yourself that is not a punishment necessarily or a displeasing by God for your life because the Bible reminds us that the sun shines for all equally, righteous and unrighteous alike without preference or entitlement. Thus, this epidemic has nothing to do with fairness/deserving or undeserving.
So, what do we do?
Well, we can either accept that things will happen to us because He is either trying to have us fulfill our destiny or have other fill theirs for His honor and Glory. He never gives us more than we can endure. If still skeptical you can stop reading this begin burying your head in the send till this is over. After all this too shall pass.
Some of us including myself at times have become so self-absorbed we have turned our vision from those who are hurting, having trouble dealing with day to day activities with PD. Other times we have exchanged one obsession for another and have left family, friends, and loved ones behind in an attempt to show PD we are in control. All the while PD has won alienating us from things that are more important in the long run. Let’s get our priorities straight once again and not lose sight of the forest for the tree. I am grateful for the opportunity to share laughter and precious time once more with my mom and daughter.
Sometimes we cannot love well if we don’t know how to or can’t comfort others well. During, this time of crisis we should practice compassion, empathy as well as comforting others. These acts of kindness will return to you by increasing your serotonin, your endorphins and even your dopamine- thus reducing your apprehensions and anxieties. If you have no human contact show love on your pets if you have them or call the national organizations to talk with someone near you.
Second, we must stop thinking about pain and suffering as a punishment because in the midst of trouble God always sees the BEST in us and sometimes this is the only way we will achieve our destinies since each one of us has a purpose in life. Perhaps, this is the time for doctors to shine and discover new treatments of care, new scientific breakthroughs that would not have been possible had it not been because of the chaos. I have discovered that the initial pain of a difficult pregnancy has yield a precious soul who delights my life and the pain of getting PD and giving up a practice that I loved has led to bigger and brighter things which had not been possible except through the loss.
As we all face fears and uncertainties, remember that God has made us all unique for a time such as this. And just like Job who suffered great personal, economic, and physical losses when the dust settled, he was greatly rewarded for having endured and not losing his faith.
@copyright 2020
all rights reserved by Maria De Leon (aka Parkinson’s Diva)
” In the midst of chaos, keep stillness inside of you.” ~Deepak Chopra
Many of you are wondering how to remain calm when things all around us seem to be flying out of control. Perhaps many, like me, had just begun to settle into a routine with your illness, family, job, responsibilities then suddenly boom everything has turned upside down. Well first of all, in life the only thing that is constant is change and things we dread tend to never happen but are the unexpected that often blindside us. Funny, one of my favorite words is entropy. According to the second law of thermodynamics with time all things tend to go into disorder and chaos unless you exert energy to keep order and oh boy, are we feeling the stress of trying to maintain some semblance of order in our lives in the middle of this world-wide pandemic.
For some reason, even as a child, I have always thrived in the midst of chaos, this may explain my deep love for storms. Perhaps this is the reason why the seasons in my life which have been stormy have thought me much more about God, myself, and life. It was during the dark times that I have experienced more self growth than during any of the calm seasons of my life. Sometimes, when there are no challenges, we tend to become complacent. Over the years, I have learned to look beyond the present circumstances to find a purpose in the long run. This is exactly what we must do now. We cannot let ourselves be swept away by the fears of the unknown. We must live a full life in the here and now Parkinson’s, Covid -19 and all.
How do we do this you might ask?
Trust me is not easy at all. Living with Parkinson’s with all the low’s and high’s requires stamina. After all, this a marathon not a sprint.
A few weeks ago, I was looking pretty happy because for the first time since my PD diagnosis, I was able to rest to my hearts content because there were no demands to be placed on me by anyone. I was complete master of my own life – what, when, where and how to do things. This was a nice feeling but, I realized I could not go the rest of my life not being responsible for anyone or to any one when I am part of a family and a larger community. All of us need a purpose to get up and fight for each day mine besides God and my family is my love for the Parkinson’s community.
Now, thanks to the corona virus, I have a house full of people again and there is little rest to be had. Yet; I am thrilled to have the opportunity to spend extra time with the most important people in my life-my family and a new purpose to help other Parkinson’s people around the world who are struggling to better deal with the present circumstances.
So what does this all have to do with surviving an epidemic while living with a chronic illness you might ask?
Just like athletes preparing to run the race or a pianist preparing for a concert we have too have to keep our skills sharpened to become effective at what we do. We must make a mental effort each day to not fall into the chaos but put our energy to doing things that will bring us peace, joy, balance and well being. Only then will we be able to make better choices for ourselves. In order for us to thrive where we are, we must begin by prioritizing things that are important to our well being like spending time with love ones if there near or calling them each day if they are far. Focus on getting the medications needed for at least 2-3 months to avoid a physical decline for lack of treatment. Still consult your medical staff when there are problems or questions- don’t suffer in silence if there is a problem. You are not alone. There are many resource centers that could provide help. Try to eating well. although, it may be hard to get out to purchase groceries, or there are some shortages in the area that you live in things have not stopped being produced just taking a bit longer to stock up. You can use an app to have food delivered to your car or place of residence. However, I must caution from using delivery people that offer themselves to help if you don’t know them. Rather, ask someone you trust to help. there is no reason not to sleep well other than having to many people at home. Since there are not many activities that require going out, you are free to sleep at least 8 hours a day. This should really improve your mood, boost your immune system, decrease pain and improve cognition.
It all about the choices that we make – do we panic or do we take the bull by its horns. But prayer is where we get our strength to overcome the tough times.
Begin with soul care- let go of things from the past that are holding you back. I like to think of PD and other life traumas like a balloon which hold on tight even though we say it does not bother us but every time you turn around you are swatting it away because it keeps coming around to obstruct the view. But if we simply release the balloon in the air we would be free of that constant pest in our way. the same way we must do with the fear of getting the virus. Until we let go, the constant concern will turn us into victims rather than conquerors.
Use this time of hardship to sift the good from the bad in your life make you better at identifying counterfeits from real things that satisfy and fulfill. Use this time also to focus on what your legacy will be .. you might never get another opportunity like this.
Share your knowledge, your story, your insights with others who are facing what you have overcome and become a mentor. Improvise hold conversations or meetings over the the phone, skype, face time, zoom etc.
Remember just because things may look ugly, and bare now does not mean it can’t turn into something something fruitful and lush in the future; just like the Butchard Gardens in Victoria, Canada were transformed from an old dried out quarry to its present magnificent state by a single person woman with a vision.
So after this epidemic has passed if you take care of your soul first and prioritize the important things in your life – you too will be bright like a star in the sky and leave behind a legacy as grand as this park.
@copyright2020
all rights reserved by Maria De Leon (aka Parkinson’s Diva)
Okay, I like the rest of the world has been glued to the news watching as the virus has continued to spread and wondering when this will all end. Although, I am a tad bit worried about myself, family, friends, and loved ones many of whom are in hot spot areas of disease outbreak working in the medical field I am confident that God is mighty and will see us all through this. I also realize that I like all of us who live a chronic illness such as PD are at a higher risk particularly if older in age (> 70), have diabetes, high blood pressure (heart disease), respiratory illnesses (lung disease) present an even higher risk. This does not mean however that you will get sick.
First, we are all in this together. You are not alone in the fear of the unknown. I am on a chemo medicine, have a horrible immune system and have 2 risks of the four I just mentioned. But, being a doctor and being married to one not only puts the disease closer to home but also reminds me of my training not to panic in the face of a crisis. We must remain calm, stay informed and take necessary precautions to reduce the risk of infection and going berserk being isolated or home bound.
So, what to do?
Scream if you must and let it all out then focus on staying well.
This means stock up on supplies – enough with the t.p…
We need medications to have enough medications first of all.
Ask your doctor to write a larger prescription for at least a month. They can do this by increasing either the dose or the times taken if insurance will not cover another month supply. Pharmacies can also help by providing an extra amount for necessary drugs like insulin, diabetic medicines, inhalers and heart and blood pressure medicines.
Of course, we all need our PD medications – crucial ones are the levodopa compounds to have extra on hand because these are the ones that could cause a life threatening condition if suddenly discontinued especially if been on them for a long time over 3 months. Ask your physicians if have any samples, ask the assistance programs if have extra samples or ways to obtain medications. If your pharmacy delivers, ask them to do so or get mail order.
Doctor visits:
If non-essential visits – cancel and reschedule for future time.
Ask if can be seen via telemedicine, skype etc.
If must travel to see doctor to endemic areas reconsider and do above- if sick or need to visit, ask if can see other doctors not in high risk areas. I will be avoiding Houston medical center for a while. However, I will talk with my doctors via email etc. to make sure I have enough medications.
If have symptoms of coronavirus – fever, cough, sore throat, congestion, *breathing problems (shortness of breath), diarrhea, *persistent pain or pressure in the chest, *new confusion or inability to arouse, *bluish lips or face (means lack of oxygen) call doctor or go to ER IMMEDIATELY. (* these symptoms unfortunately can occur in the context of PD as well but even in the absence of a virus these are still emergency symptoms that require prompt medical attention).
Have a plan if you get sick:
Even before you are sick- if are widowed, single, elderly, live alone- move with a friend, neighbor, relative. (because my mother is a widow and is at higher risk plus lives closer to endemic area, she will now be staying with me.)
If not an option to have a caregiver – stay in touch by phone, email, social media with others but also with someone nearby that can provide quick assistance in case of an emergency. Staying connected will also help diminish anxiety, depression and isolation.
Determine before hand who is the best person to care for you should you become ill.
Family and caregiver supporter:
Take care of yourself to avoid getting infected- wear gloves, mask, use only disposable utensils and paper plates. Do not share drinks, food, disinfect any area touched by sick person and isolate that person to his or her own space if possible and his or her own bathroom. Although it feels terribly lonely, this is only way to spread contamination among members of family if more than one or two people in household. I have first-hand experience of this when I received radiation for my thyroid cancer. This means that person infected unless demented, incapacitated, disabled or bed bound can take his or her own medications which should be kept near patient. And food should be placed at door of room near sick patient. (I never thought that I would have to revisit that experience in my life). When I came home with radiation, I could not touch anyone, prepare food, use anyone’s dishes, same bed or commode. Anything that I wore or touched went immediately into a trash bag and sealed away from everyone. This is the type of drastic measures we must take in order to ensure our protection and best safety through this time of crises.
If sick person is bed-bound or demented ensure that you know your loved ones medication regimen and have necessary equipment at hand such as oxygen tanks etc. keeping in mind that these may have to be discarded once illness recedes to avoid contagion.
Remember you are strong, and you got this- if like to share any comments or questions feel free to do so – I am hear and I am listening …. I will continue to bring more info in the next few weeks like things to do at home to stay mentally, socially, and physically active.
@copyright 2020
all rights reserved by Maria De Leon MD ( aka Parkinson’s Diva)
“Where there is no vision people will perish.” Proverbs 29:18
This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctors’ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinson’s (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinson’s diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test …I have learned that in life like in science nothing happens overnight. We must learn to wait on God’s time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples life’s better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you don’t give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus Test…We can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- “I can & I will”
So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.
Happy New Year to all my friends, families and followers!
@copyright2019
All rights reserved By Maria L. De Leon
As the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of my ongoing ever complex not one but two chronic illnesses. Having now been diagnosed with lupus as well!
This year has been a year of many important milestones- celebrating 20th anniversary, turning 50, getting the opportunity to be a ‘starlet’ for a week, reuniting with long lost friends, honored to give first all women with Parkinson’s conference in Indiana, had the honor to be part of an avant-garde weekend retreat for Parkinson’s patients and their caregivers in South Dakota with nearly a 100 in attendance, being part of a pilot program to help young women to grow spiritually, learn life skills, and be empowered in the midst of their circumstances in order to thrive as successful adults turning into tomorrow’s fearless mothers, wives, friends, professionals and leaders. Finally, I also had the privilege of having my ‘parkinsonsdiva’ blog be recognized twice as one of the BEST! In the PD community (This of course could not happen without all you wonderful people (women) who take time to read it and make it one of the best! thank you!)
I was touched by one of the most beautiful common experiences which took an unexpected twist for a memorable and meaningful events of my life just when I needed hope and encouragement the most.
We all know that most of our lives are punctuated by peaks and valleys and although we wish we could go from peak to peak there is still something beautiful and comforting in the valleys. The valleys in biblical times is where one was most certain to find God and healing could commence from inside out. But aside from finding salvation in the least likely of places, we also have signs that continue to inspire us and gives us hope in our daily walks. When my dad was terminally ill, I witnessed the most magnificent double rainbow as I was driving home full of tears on my way back from the hospital and upon seeing such spectacular view I felt at peace and knew everything was going to be okay.
Four years later, about the same time my dad started his downward decline I began to have serious medical issues which have been taking me away to some extent from you and the things I love. Yet, on my way back from a very long and arduous trip to the hospital and a slew of specialist as I dosed off while my mom drove, I saw the edge of a rainbow. I wondered out loud if anyone had ever seen the end of a rainbow- after all they are said to be full circles which I had privilege of seeing once before in the Las Vegas. Perhaps there instead of a pot of gold I could find a greater treasure like health once more.
Suddenly, I began to see one rainbow after another all sizes and brilliance and then we came to the end of a rainbow it merged right into the spot where our car was standing at the light but if you looked up it seem to sprout out of us from inside the car. I sat up and marveled at the phenomenon but in the next 40 minutes of our journey this occurrence took place at least 4 more times.-lifting my sadness, and strengthening my weakening resolve to keep on fighting for the people and the things I love most. Just to let me know that these signs from heaven were not mere coincidences that he still was in control of my live and my well-being and that my faith in God had been duly noted for once we arrived to a sunny home leaving rain behind- when I stepped out once more as the sun was beginning to set amidst a purplish sky there it was once more a splendid rainbow across the sky.
You may say, how can I give thanks living with PD? Or how can I find joy in my present circumstances? Believe me, I understand your trepidation. Is not easy to feat to face our fears but you can do it because you are not alone. We (especially me) are here to share the rainbows with you to help find your inner peace and conquer the valleys of loneliness, illness, frustration, and hopelessness. As I have learned to conquer my fears of living life with a progressive debilitating illness and face head on an uncertain future by believing in God you too can find harmony and give thanks in the midst of adversity.
Although, there have been many losses I have also experienced many great things this year when is all added up the pluses will definitely outweigh the negatives. I continue to be grateful for my health however failing it maybe at times, my family, friends and the whole Parkinson’s community who has invited me into their homes.
Thank you,
Parkinson’s Diva
Happy Thanksgiving!!!!
Copyright2018
All rights reserved by Maria De Leon MD
Before Parkinson’s (any chronic illness, we all “lived like water flowing down a hill..going in a single direction until we splashed” against a rock which has forced us to find a new path.
A Relationship by definition is the way two or more people are connected but more importantly how they behave towards one another. As long we live in this world, we will always have relationships some of which are closer and more intimate than others. These latter ones are the ones that become more deeply impacted and can be totally uprooted by our behavior, the choices we make and the things that impact our lives.
We know that no two people are ever alike and the fashion in which we deal with stressful situations is no exception.
This is the time when boundaries will be pushed to the limit.
So it should not be a big surprise that when major life stresses occur in our life’s any and all relationships will be put to the test. The hardest hit are always the ones closest to us like our immediate family and close friends.
I too have lost relationships of decades because the person I thought would understand my shortcomings would understand. Although, the losses hurt and the relationship mourned I had to come to terms that my health was more important.
How do we keep our most valued relationships from becoming part of an UN-salvageable shipwreck?
Setting appropriate boundaries.
We can’t expect to have good relationships or understanding of our needs; much less be able to tell our friends and family what we like to get from them to help us continue being the friend, partner, lover, sister, and mother. Although, these will have to undergo some type of modifications to allow for life’s changes in both parties.
Discuss gently with the people you love, the specific issues you have and then try to find ways to get around these issues. For instance, I tell my friends and family that in order to protect my limited energy/time that may be needed for a higher priority, I reserve the right to cancel a commitment especially if I am not well.
Sometimes however despite our best efforts casualties will occur and we must learn to let go.
When we set boundaries saying what we will and will not accept in our lives it forces the other person to evaluate their own boundaries.
How you handle these strains depends on the intimacy of relationship and how valuable that friendship etc. Some relationships can’t be dissolve such as familial ties but can become estranged with lack of communication.
I am sure all of us have experienced strained relationships during our lives particularly after receiving a Parkinson’s diagnosis. At times is hard even for us to accept our own illness much less for others who are mere spectators to fully understand our condition as outsiders.
For instance, my close friends know that my life changes day to day and so in making social plans we have learned to give each other leeway in changing plans last minutes as long as we both get the same opportunity. Equally we are all open to spontaneous planning to gather. In my case, people that have trouble accommodating to this my new life and insist on making plans way in advance and or in getting upset if things change last minute have been for the most part excluded from my social circle. Similarly because of my ups and downs and loss of voice along with all my other demands, I have adopted communicating with my special friends and family members for the most part via text. This way we are constantly in communication. However, there have been those that insisted and got upset if I was not able to speak directly with them at the time they need me without understanding my own issues and did not want to compromise as to how and when we spoke. These types of demanding behavior even from long term friendships have resulted in breakage of a friendship. But like a bad hair do you must simply accept it and know that you will get another chance to try something new and perhaps even better.
Take away
Because we don’t live in a vacuum all of our actions have consequences. You must speak up and let the person know how you feel and is up to that person to respond positively or ignore your circumstances. If that person makes no effort in meeting you half way perhaps is time to rethink that relationship.
Develop healthy boundaries say YES to good things and NO to bad things! Speak your mind gently without feeling guilty but remember that those around you have the SAME right to decide what they deem BEST for them!
@copyright2018
all rights reserved by Maria De Leon MD
Parkinson's Diva 