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

“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.

Apr 04

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.

Apr 02

How to shop during Covid pandemic By Tara Solomon

Unlikely Suffering Can Bring Forth Joy! By Maria De Leon

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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.

Mar 20

Maintaining our cool in the midst of chaos. By Maria De Leon

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” 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.

Mar 16

Surviving Coronavirus Outbreak with PD: By Maria De Leon

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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.

Mar 05

Diva Tips to Cut Down Meal Prep Time: By M. De Leon

Parkinsons Diva

Fashionista at heart