So long, farewell, adieu, adieu, adieu… by Maria De Leon

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However bad life May seem There is always something you can do ( while)…There is life there is hope

After a crazy year where everything that could go wrong went wrong, I know that all of you are looking forward to a fresh start just as I am. On the first of the year, I felt compelled to sing “so long farewell…” from my favorite movie The Sound of Music.

As I watched it snow on Sunday, I welcomed the calm and beauty it brought taking away all the anxieties fears and worries of the past year.

I thought about the events of last year …

COVID-19 came and my daughter came home and has remained with me which was a plus. Then I got the virus was sick for two months, nearly lost my father-in-law, lost many Parkinson’s friends then nearly lost my husband as well as the year drew near to the end.

First came utter denial could this really be happening? Were we living another world pandemic like the one seen in 1912 with Spanish Flu?

Followed by swearing screaming and crying  as I realized that this would leave permanent scars both physical and mental. From the beginning, I worried that this could unleash another parkinsonism wave as the one seen 100 years ago. Cried more when my fears came true.

With persistent disease and talk about flattening the curve, I sank more into isolation. Thank goodness for YouTube and Netflix. To ease the boredom between all the hospital visits, I went on binging spree – but it was not all a waste because I learned Turkish.

Instead of bargaining I took to blogging about the pandemic until I was sick and tired of being sick and tired of same topics discussed ad nauseam.

Days without cooking due to shear exhaustion and apathy relying on door dash.

Shopping for everything under the sun online to be delivered at my doorstep or for pick up without having to set foot in a store.

Pleading to God for mercy and relief from pandemic Finally, after a couple of months of feeling no motivation (increased apathy) acceptance came.  Seed of hope began to take root deep within and interest in life has begun to flourish. After my coping strategies were all put to the test, I found new courage to face a new year in which the pages of many chapters remain to be written. Although some of the chapters in our past have been dark, they have taught me resilience, gratitude for small and big things, as well as well as reminded me that my faith is bigger than my fear because God is with me. Because of this I have courage to face the challenges ahead to fear less and allow my inner voice (which sometimes is barely audible in the midst of chaos) to lead me forward and allow me to persevere and say ‘yes you can !’

I hope we can say goodbye to wearing masks and talking to friends thru plexiglass. I want to be able to travel again and roam free and visit friends and loved ones without fear of contracting the virus while I hug them for a long time. I want to look upon the beautiful smile of my friends once more. And I want to share my smile (of course accentuated by my red lipstick!) with others.

To all my friends much love, courage, strength and determination to keep being the PD warriors that you are and a very blessed 2021!

@2021

all rights reserved by Maria De Leon

Un Llamado a la acción para todas las mujeres con parkinson : María De León

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” 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.

@copyright 2020

All rights reserved by Maria De Leon

A Time to Reflect & Find Hope Anew. By Maria De Leon

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“You will forget your misery; you will remember it is as waters that have passed away. and your life will be brighter than the noonday; it’s darkness will be like the morning. and you will feel secure because there is hope; you will look around and take your rest in security…” Job 11:16-18 ESV

 For all my followers, I know that I seem to have disappeared, but I assure you that my thoughts and prayers have never left you. This year has brought many of us  trials, struggles and hardships. As, I read the news the other day, I was extremely sad to discover that more people have lost their lives to suicide than to the virus itself. I believe the reason is because many of us seem to have lost something vital –HOPE.  

When this year began, I commenced the study of Job (it’s customary for me to begin new biblical study each year and each time has been something that has helped me deal with the present circumstances)–  never has this story rang so true to me as it does today. As the year unfolded, I found myself thinking more and more about this man’s life. I like so many of you was reminded how precious life is and how priorities can change from one second to the next.

At the beginning of the year my entire focus was on Parkinson’s. I wrote about how excited I was about all the new genetic,  gender and diversity initiatives occurring in our community across the globe and how honored I felt to be part of this global awakening even if my part was minuscule. Then the pandemic began and turned my world as it did all of ours upside down. Although, I have continued to play an active role behind the scenes and are extremely grateful for the opportunity to be part of many new firsts. My focus has shifted to bringing hope and encouragement to those living with Parkinson’s and other chronic illnesses. I like most of you have had to reach deep while relearning how to survive but also thrive during this pandemic, which I assure you has been no easy task.

Many of us have learned firsthand what real fear is as we have watched a love one become ill and whisked away by an ambulance or through the emergency room doors wondering if and when we might be able to hold our loved one in our arms again. Some of us might have gotten lucky to see the return of said loved one to our homes and be thankful for that . But some of us may not feel as blessed having lost one or more friends, family or loved ones. I have had my share of Parkinson’s friends , and other close friends lose their battles. Many due to the virus others perhaps precipitated by the current conditions which heightened the stress or decreased their ability to get appropriate care for their underlying conditions.

My continued prayer during these challenging times especially when my husband was in ICU near deaths door was for me to have faith greater the fear I was experiencing. I tied to remind myself that things could always be worse. Although the fear of  losing my husband, my partner, my caregiver was very real. I thought of my best friend who had just lost her husband suddenly and my heart saddened but regained courage as I had watched her try to remain strong in the face of adversity. I too was feeling vulnerable both physically and emotionally compounded by the fact that my husband illness was on the anniversary of my father’s death.

Again, I turned to Book of Job and was comforted by the words that are the backbone of the advocacy work I do.  “you will be secured because there is hope…” (Job11:18)

Today I am grateful for the great friends that I have in this community, friends that sit quietly next to me (and you) during the storm.

During these difficult times I like for all of you to remember, as I do, the story of Job who lost everything his family, his friends, his fortune and even his health but he never lost his grateful heart nor his faith. I pray that goodness, kindness, hope, and faith prevail as we continue to make sense of the losses we have had and the personal trials we are still enduring. I am confident that as in the story of Job that if we manage to hang on for one more day eventually there will be healing, peace and love once more.

Deep Dive into Relaxation: by Maria De Leon

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As the days blend one into another and our choice of activities become restricted due to social distancing as well as increase demands at home for those with aging parents or school aged children, we must become ever cognizant of our moods and our response to external stressors. We must find ways to remain mentally healthy to be able to stand tall through the storms of life.  

Here are 4 tips that help me achieve peace and relaxation in a world full of turmoil.

Çay/ Ocha / Teatime

I recall my days abroad in the UK where teatime is a way of life – here like in many other country’s like Turkey and Japan where tea is not just a beverage but rather an integral part of the culture and longstanding tradition of consuming a perfectly brewed cup of tea with family and others. I too became enthralled with the notion of afternoon tea. A nice relaxing conversation at the park with my friends over a cup of (my favorite raspberry) tea- the break always gave me something to look forward to; these days with the pandemic the ritual is even more important as it provides an outlet to decompression from the day’s activities particularly from the virtual meeting overload. To make it more special I prefer to use my favorite porcelain tea. As I sip it in my favorite chair by the window, I am immediately transported to grand days I spent at the Fairmont Empress Hotel in Victoria, BC

If you do not like tea you can do a cup of coffee or hot cocoa – all of these can restore energy and allow you to be more productive.

Cooking & Singing Out loud

This is one of my all-time favorite activities to do especially in the middle of the night when everything is so serene, and I am wound up and awake.

I like to try new recipes especially desserts – as I mix, measure and pour, I like to crank up the volume of my favorite eclectic playlist that includes anything with a beat ranging from  Brazilian to African drums to the sounds of a great guitarron (deep body guitar with 6 strings) and vihuela being (smaller figure 8 guitar played like a lute) played by a Mariachi.  

Upgrade the Everyday

I am sure all of us have fancy dishes and things we “save” for special occasions but in this day and age with so many unprecedented events happening in our communities, enjoying a meal in fancy plates not only gives us a sense of calm but also provides an escape from the mundane. After all beautiful things are meant to be enjoyed transforming ordinary chicken spaghetti to a culinary masterpiece.

Tidy up your purse

Nothing calms the boredom and stress down like a good cleaning -after all ‘cleanliness is next to godliness’. One of my favorite things to do to break the monotony is to dump all the contents of my purse on the sofa and reorganize all its contents in a perfect pristine order (although short lived  it is extremely satisfying) and for a moment no matter how brief ; we feel like we have achieved control over our own world.  (You may also have same sense of accomplishment organizing your pills for the week or the month).

In the end, it is up to you to find your own way of calming yourself whether it is by using any of the above tips or creating your own. The key is allowing yourself to be in touch with your senses using sight, sound, touch, smell, and taste. It may take a few trials to hit the right note but keep trying new things to engage yourself in and forget for a few moments the worries of the day. Sometimes being so far out of our own comfort zone helps us focus on what is important by clearing our minds and providing us with a brand-new perspective. Yes! It took a world pandemic to make me enjoy being an active participant in the culinary arts. So, who knows what hidden gems deep diving into relaxation activities can unveil about yourself?

@copyright2020

All Rights reserved By Maria De Leon (a.k.a Parkinson’s Diva)

Parkinson’s Disease and Low Back Pain: By Maria De Leon

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I don’t know about you but low-pressure systems does a number not only on my migraines but also on my back. So, having to endure the possibility of being hit by a major hurricane (i.e. Laura) while popping anti emetics and pain pills to deal with both migraine and back pain is no fun at all. Since I developed PD both have worsened. My migraines which were moderate but infrequent intensified and became more frequent while my previously healthy and strong back has had to endure spontaneous disc herniation’s, which I attribute to PD.

In fact, many patients with PD suffer from chronic low back pain and appear to have a higher incidence of low back pain. In fact, low back pain maybe one of the early presentations of Parkinson’s disease (30%) as it was for me. I suddenly developed excruciating pain in my low back and a feeling of continuous spasm which was relieved once I began anti-Parkinson treatment. It is believed that this pain is caused by a combination of axial rigidity leading to abnormal posture (primarily stooped), abnormal muscle tone, truncal dystonia, and abnormal contractions (which I experienced initially).

Some scientists have noted that perhaps low back pain is the most common “parkinsonism” in the world due to an astonishing similarity in neurophysiology.

Both have altered sensory input with a disruption in the basal ganglia making it difficult to have “anticipatory postural adjustments” meaning they have inherent inability to compensate for changes in voluntary movement that allows for one to maintain balance and posture. Interestingly, both PD and low back pain share decrease in stride length, and velocity of gait as well as asymmetries of steps.

So why is this important? Well because in my experience both as a physician and a patient having poorly managed low back pain leads to significant disability. Low back pain in fact ranks first in global disease burden for years lived with disability compound this with Parkinson’s which is the second most prevalent neurodegenerative disease in older adults leading to a perfect storm not unlike Katrina, Rita and Laura.

The share similarities between the two can confound the management of either disease. That is why is important to note that we must treat both aggressively to prevent disability via physical therapy, adjustment of Parkinson’s medications (in my experience frequently requiring higher doses of dopaminergic medications), may also include injections, anti-spasmodic and anti-convulsive treatments as well as surgical intervention, as it was the case for me. Because when we talk about the co-existence of both PD and low back pain the percentage skyrockets to a whopping 85%. So, if you are suffering from chronic low back pain make sure you seek appropriate medical attention  from a multidisciplinary team which should include your neurologist/MDS, physical therapist as well as pain management, orthopedic specialist, and/or a neurosurgeon. Over the years, I have used all these specialists to treat my back pain along. Currently my dopaminergics along with stretching exercises keep my pain at bay unless there is a depression in the Gulf and then all bets are off and muscle relaxants and anti-inflammatories are required with an occasional pain medicine or Lidoderm patch.

Besides talking to your doctor about best treatment options for your PD and back pain, you may also participate in a study to help discover a new treatment for low back and sciatic pain.

Learn about a new research study for #sciatica resulting from lumbar disc herniation. Study-related care is provided at no cost. #sponsored #cureclick #lumbardischerniation #chronicpain #sciaticatrial Answer a few questions to see if you qualify! https://curec.lk/2QD3klu

Sources:

Jacobs J., Henry S. and Horak F. (2018) What if low back pain is the most prevalent parkinsonism in the world? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5940750/

All rights reserved by Maria De Leon

Copyrights@2020

@defeatparkinsons

Tips to Transform Yourself from a “Worrier” to “Warrior”: By Maria De Leon

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“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)

Join Poolside chat on Women & PD You tube chat:

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Here is the you tube video link:  Mid-Summer Nights Poolside Chat on Women and Parkinson’s 2020

please join us and have a virtual girl’s night out while discussing salient topics on PD, sex, hormones and much more

send your questions ahead of time – if you are to shy to ask in person..

look forward to our chat – bring your favorite umbrella drink , bathing suit, Hawaiian shirt or whatever makes you feel good…

xoxo

Parkinson’s Diva

thank you for joining!

New Reality of Living with COVID-19: by Maria De Leon

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“The tiny seed knows that in order to grow it needs to be dropped in dirt, covered in darkness, and struggle to reach the light.” Unknown

For me fortunately, the pandemic had not held a deep wrenching impact on my day to day life, as it has for many others around the country, until now. Although, it has left an emotional toll as many of my friends and loved ones continue to be in the epicenter of the pandemic. While some friends have been stricken by disease and forced into isolation, several are still fighting for their lives in the ICU as we speak. During this time, I have lost 2 dear friends yet have been unable to pay tribute as I would have wanted…

Yet, for all this emotional turmoil my home life had been stable. Having many years of practice living with a chronic illness staying home and avoiding contact with others had been a cinch. Plus having weather many complications in the past 13 years I am a pro at making life work even when confined at home and barely functioning. I have a work, sleep, medication, housekeeping and overall, well -being routine which my family has gotten used to over the years.  

My husband’s increased risk of contagion at work along with having my mom move in with us and daughter returning home from college put a hiccup in my well-oiled routine initially, but we settled in nicely after a few weeks.

However, as the coronavirus remains a fact of life to which we are having to adapt living with my fears and anxieties have just now begun to escalate. This is the case for many of my friends who are chronically ill. This is because the risk for us who are already living with a myriad of complex medical problems are at higher risk of infection as there are an increase number of carriers. While everyone was quarantined, I felt safe and secure I could manage the risks. Plus, there is some comfort knowing that even when down you are not being judged for not being socially active since none was socially active. Although, I have never stopped socializing with friends and relatives throughout these last few months.  

However, now that everyone is starting to get back to a “normal” life my normal will have to change again causing disruption for all involved. As everyone is feeling free, I am feeling captive. I am sensing the pressure of having to socialize outdoors and participate in social activities face to face with colleagues and friends while every fiber of my being feels the need stay isolated for a longer period. This is because as anyone who has been ill for years will attest that we will do anything to avoid hospitalizations. The mere mention of having to go to hospital sends a shiver up our spine. When you are as delicate as I am where the slightest contact with any ordinary garden variety bug can wreak havoc for months you too would think twice about going out in this present climate.  

I still remember the last time I got ill right before Christmas, I had been doing great and a friend was hospitalized with mycoplasma pneumonia, yet I still went to see her feeling I might be protected by my PPE’s. Two days later I was sick for two months. Now imagine the possibility of contracting a more aggressive virus for which there is no known treatment. The fear is real, and I am not willing to put my life at risk because others do not mind putting theirs on the line.

So, what are the options?

Live in fear- of course not.

It means that I will continue to practice safety measures as I have until now placing even stronger boundaries on who I let in my life. This means even close friends and relatives who are not willing to take safety measures are not allowed near me until there is a change.

I might have to continue to work from home, continue using social media apps to communicate with others, use telemedicine to do doctors visits, order food online, and schedule appointments for biweekly blood draws to minimize contact with others. I will continue to meditate, be creative, sing, dance, take my medicines on time, and advocating for others while I continue praying for a vaccine to be found soon. Finally, that we all come out from this pandemic better, stronger, more compassionate and caring individuals willing to work together for a better tomorrow.

@copyright 2020

All rights reserved By Maria De Leon MD (aka Parkinson’s Diva)

Parkinson’s Diva Secret to Stress Free Living During Pandemic: By M. De Leon

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“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)