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

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

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 05

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

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Cooking is like love . It should be entered with abandon or not at all. ~Harriet Van Horne

I am sure all of you have agonized at one time or another about meal preparation when you find yourselves in a depressed, apathetic, sleepy, shaky, and dystonic state as I often have.

As all of you know one of the hardest things to do as an adult is thinking up meals and spending time preparing them in a timely and nutritious fashion. The pressure is greater when it is our job to feed an entire family especially when there are children depending on us. I must admit, I am the least enthusiastic about meal preparation than any other house chore. I am the sort of person that enjoys cooking on special occasions like family get together as well as during holidays. When I do, I tend to make a big production with all four burners, and oven going at once. However, this sort of cooking although enjoyable it is not only time consuming but impractical for day to day living when you are a busy mom running around dropping and picking up kids after school. Now add the stresses of living with a chronic illness and things get even more complicated. Not feeling well leaves us drained with a limited amount of energy to do all the things we must accomplish as mom’s so sometimes is easier to stop by a drive through and pick up fast food.

However, because eating out is expensive and boring when you live in a small town like I do; it is also often not as nutritious- it is only good if trying to gain weight. So, you either forgo eating all together or resort to junk food. Neither option helps our disease state. Over the years I have tried many things trying to come up with the fastest and easiest way to serve my family. Unfortunately, take out is still part of the rotation.

Today, I will talk about several options that may cut down on planning and mealtime prep. Of course, the first issue is having food available to cook. Sometimes is very difficult to go out because of our illness and even harder if we can’t drive and depend on others. I sometimes avoid going out because it wears me out the simple act of grocery shopping especially in a big supermarket. Fortunately, there are ways to simplify this through various apps to supermarkets that will let you pick what you want and all you have to do is pull to a curb and pick up groceries. There are some places that will even deliver for you like amazon pantry.

Second, once you have the food is finding the energy and time to cook. May try cooking in bulk and freezing meals for the week. I have done this many times usually cooking in middle of the night when I am most active and feeling my best. However, it is important to note that not all meals keep well when frozen. One of the easiest meals to prepare in less than 30 minutes and can make a large quantity that keeps is grilled sirloin beef stew. This can keep for a couple of weeks and simple reheat and pair with corn bread or rolls.

Third, cook things in a crock pot- I have mentioned previously several good recipe books (Any Blonde Can cook Series by Debbie Thornton) for fast and tasty meals.

Fourth, there are several services available that offer delivery of either precooked meals or easy to cook such as Freshly, Hello Fresh, Blue Apron, Home Chef, Green Chef among others.

I have tried several of these services. Freshly, I did not like because they were basically overpriced TV meals, small portions, did not keep well and not very tasty.

Hello Fresh, I really liked because it comes with very healthy organically grown vegetables all pre- measured and individually wrapped and it comes with instructions. they usually take no more than 30 minutes to prepare. Blue apron and some of the other ones according to some friends are equally good and same pre- sized and pre- measured. Only downside to these is the cost especially if large family; plus have to order a minimum of 4 meals which if live alone may not be as practical. What I like about them one is the variety can choose mechanical soft, soft, vegetarian, gluten free, vegan, soups, lunches and dinners. Many have introductory plans so at least you can try and decide if this is for you. Delivered right to your doorstep weekly making it very convenient especially in the winter months or when trying to avoid crowds because of coronavirus.

Fifth, another place I have found to have a good variety of foods is a Mackenzie Gourmet food. They can be a bit pricier for somethings but overall is excellent quality of food for price and amount of time to prepare. All items are precooked all you have to do is thaw out and heat. I love ordering certain foods from here and then adding sides for quick meals.

Of course, now that I no longer have children at home I have much more energy to prepare meals then previously mostly because it is much easier to cook for one or two people than for an entire family especially when everyone has different likes and dislikes.

Remember, these are but a few options which I have found to help me maintain a nutritious diet and a schedule. There are many more options out there and I would love to hear some of your tips.

Jan 28

Could a cluttered life and house be a sign of poorly controlled symptoms? By Maria De León

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“It’s not clutter, is my unique filing system.” Jonathan Lockwood Huie

Have you ever noticed that when we are ill we revert to doing the bare minimal which means basic survival activities. No make -up, no color coordination with our clothes. We are lucky to even shower and get dressed without passing out or exhausting all of our energy. I had been feeling so run down that I had neglected my writing not to mention my home.

Who cares if the clothes are not put up as long as they are clean and folded? That alone took an act of congress to do (ha- given present circumstances in Washington that is saying a lot!)

Recently, I went to my PCP because I was finally feeling like myself and was able to drive myself there. I proceeded to tell her about my last several month’s ordeal with all the specialists I had seen along with the myriad of tests and treatments I had had. Much to my chagrin, all she wanted to know was if I was doing anything to exercise and lose weight. Granted exercise is a way to maintain our illness in check and prevent us from deteriorating faster. However, before one can exercise one must be able to have enough physical strength to even move, shower and do basic hygiene. Here I was proud I had been out all week after several months of feeling like a recluse. I had actually dressed and groomed without any problems like a normal person would. I was even wearing with make-up once more, had a nice hair do and jewelry on. I was back!

But my triumphant attitude was quickly deflated by my physician’s lack of interest in the fact that I was looking well.

Chronically ill patients due to their illness have a lot of ups and downs and our goal should be to have a smooth course with our illness avoiding as many ups and downs. Our jobs as patients is to work with our health professionals to smooth out those bumpy roads. However, if our doctors don’t acknowledge a problem we are going to face greater challenges. So we must learn to speak up and ensure that the message is getting across about our difficulties with essential activities of daily living.

I think sometimes we as physicians miss the trees for the forest. We should really begin by asking basic questions like are you able to dress yourself in a normal fashion – never mind the falls, choking, dizzy spells and so on. What does your home life look like? Have there been any changes lately?

Heck yes!

Over the last 6 months not only did it take me hours to do basic hygiene leaving me exhausted and often needing a break before, during and after but also neglecting non- essential house duties. As laws of thermodynamics dictate the world tends towards chaos it takes energy and constant work to keep organized and tidy in our appearance as well as our surroundings. Those of you who have kids or grand kids know this. You barely finish picking up the toys, shoes, coats etc. and before you it, as the kids go by thunderous swoop, the room is once more untidy and disheveled. Needing order once more. But what happens when there is no extra energy to do these basic cleaning activities- clutter begins.

As a neurologist I was taught to think as hoarding as a mental illness very often a sign of dementia but perhaps we need to look at degrees of untidiness as a sign that things are amiss and underlying illnesses are present or not well controlled.

I have always prided myself as a very tidy and neat individual except in my work space which has always been cluttered with all sorts of things that inspire me or interest me. However, over the last year as my health has been more precarious my neatness has fallen somewhat to the way side. At home, I have slowly begun to accumulate things that I simply had no energy to sort out on any given day. Meanwhile developing a few pile of objects in various rooms of the house. This was not because I did not care or liked the mess or did not want to clean I simply had no energy to do the basic things like take care of my daughter, going grocery shopping, cooking, paying bills, going to doctor, tending to my mothers and my own medical needs. I simply said tomorrow I will get to it and next day came I was equally exhausted and worn out and something more pressing took my limited energy. So either you like me learned to ignore it or are just too tired and sick to really notice.

Funny thing having a cluttered house during poorly controlled illness is like when you been sick for a time and can’t seem to get enough rest and spend most of the time lying in bed finding it very comforting and soothing. But as soon as our bodies are restored the first thing we want is out of bed! When our chronic illness symptoms are restored we want order back in our lives!

I knew I was back to “normal” when I realized that the things that had not bothered me for nearly a year we’re now demanding my attention. Screaming in fact. So I have decreed 2019 the year of de-cluttering!

But now I know that when the clutter begins if it does again I won’t wait a year to get help with my symptoms because this is the first sign that something is amiss! I hope you do the same. Talk to your doctor if this is occurring.

Sep 03

PD & the ‘Kamehameha Effect’: By Maria De Leon

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Have you ever heard your loved ones complain or say that when you are up and about in public you seem different? They may describe you as lively, happy, and energized but moving better even. However, they gasp, as my husband often does, asking why can’t we simply have that kind of motivation when we are at home rather than just sit around like bumps on a log?

Not long ago when my family and I traveled to Hawaii for vacation my husband finally put a term to this positive effect of well-being that ensues when confronted with something utterly delightful to us. The ‘Kamehameha effect’ as my husband lovingly has coined it, is the end result of a natural boost of dopamine in our brain’s when confronted with pleasurable, enjoyable things. After hours of touring the island, there I was barely able to walk, shuffling, feeling stiff all over particularly in my lower back which was beginning to hurt down to my feet. I was choking on my own saliva and was beginning to lose my voice. When suddenly we came upon the current Supreme Court of Hawaii – also known as Aliiolani Hale building which has in its courtyard a statue of King Kamehameha I which is facing Lolani Palace. At the site of this grand structure I became so ecstatic since it happens to be the headquarters of Commander Garret and his Hawaii 5-0 unit. Seems like within minutes, I was no longer stiff, shuffling or choking. Husband was astonished at the effect calling it the ‘Kamehameha effect’ and still teases me about this every chance he gets.

He insists that this effect is purely is psychological and wishes I could summon it at will. However, although it has a psychological component is not that easy. It is instead a chemical reaction that takes place in our brains once ignited by exterior forces. The ‘Kamehameha effect’ is one that can be seen even in groups of Parkinson’s people at the same time if united by same outside force as was the case in New Orleans when the Saints won the Super bowl in 2010. According to Dr. Georgia Lea, a neurologists and assistant Neurology professor at the Oschsner Institute in NOLA, that during the super bowl championship all her PD patients who were fans of the SAINT’s suddenly were cured for hours to days!

This is the ‘Kamehameha effect’ at its core – ignite our own happy endogenous neurochemicals to bring forth dramatic improvement in our PD symptoms.
Although, this effect is not a switch which can be turned ‘on’ and ‘off’ at will, there are things we can do to promote the repeated occurrence of this phenomena by doing things which brings us joy, passion, love, gratitude and satisfaction. As one of my favorite literary authors Gabriel Garcia Marquez would say; “there is no medicine to cure what happiness cannot.”
Go ahead find your passion and unleash the ‘Kamehameha effect’

May 01

Parkinson’s mom diary: Maria De Leon

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” A mother is she who can take the place of all others but whose place no one else can take.” unknown

To my dear readers – first i want to thank everyone for making this journey more fun.. and for making this site one of your favorites.

As we near the month of May when we celebrate mother’s day both in this country and other countries around the world such as in my native Mexico, I thought i would write about being a mom with PD.

All of us who are moms know how wonderful and equally challenging is to be a mom; just when you think you have gotten the hang of a stage or phase – our children go on and change. Now imagine having a chronic illness like parkinson’s disease where although no objective fluctuations are noticed or documented we know for a FACT that fluctuations in our daily lives are a part of living with a chronic illness. Sometimes we just don’t know how we are going to feel the next minute much less the next day or month. As my daughter reminded me today when we were having a conversation in the car on way to school, “mom, I am glad you are feeling well these days but it wont last, is just a matter of time!” when i gave her a side ways look she replied: “you know is true. that’s what happens with your disease.”

As much as I protest this statement and try to reassure her (or rather) that this time will be different, i know that as long as i have PD i will have ups and downs which will interfere with my ability to perform my motherly duties. (secretly praying these deviations are few and far between).

However, these roller-coaster episodes has made me reevaluate my thinking and recommendations for women who have PD and want to be moms.

Motherhood as I said is a wonderful experience but is not for the faint of heart because each child comes with his/her own challenges and gifts to deal with; so having more or less is not necessarily the answer.

I was lucky I already had my daughter when I got diagnosed. Yet, because I was so young she has had to live with my illness practically her entire life. Plus, as a mom I have had to struggle much more than I would have should I had been a healthy mom in raising her and being a constant in her life. I was blessed to have friends and family to help me care for her especially during those times when the medication made me so ill i could not drive or the disease was so bad I could not stand to be touched much less cuddle her- something that broke my heart and still to this day feel guilty about.

So deciding to have a child once you are diagnosed with PD is not an easy think to decide and should not be taken lightly. Although, as far as me know fertility does not decrease with the disease and health of fetus is not affected by having PD, many of the medications currently used to treat the symptoms of Parkinson’s are contraindicated at least partially for lack of information on the short and long term effects of the fetus. Further, some of these medications also can be passed through the milk making breast feeding difficult after delivery.

Another thing, one must keep in mind is that PD symptoms can worsen during pregnancy. But, assuming that you are able to carry the pregnancy to full term there are many other issues to consider. Remember this is a progressive disease after all. You must consider not only the stage that you are in at the time of conception but be able to look ahead at the age you will be and the stage you might be at when your children reach certain milestones like going to elementary school, high school etc. you must also consider your support group – is there a reliable one? Does this include a supportive spouse/ partner? In my early stages of disease I would not have been able to care for my toddler had not been for my husband stepping up and being mom and dad something not every father can do or is willing to do.

We all think about the sleepless nights with infants but for me the hardest years are once they become independent. The problems are bigger, more serious, and require much more involvement from a parent in establishing appropriate boundaries and guidelines. No matter the age children need clear boundaries. If you are too sick to reinforce the rules will only create problems for them as adults in the future.

I do more running around now that my daughter is a teenager than i did when she was younger plus on top of my illness i have increased age which makes me have less stamina and less able or willing to multitask as I did 5 years ago.

However, if you do decide to be a mom with PD make sure you know that you are NOT alone! that you have other women like me to guide and support you and know that it will be the greatest adventure in your life as well as the most rewarding. Plus, for me my child has served as the driving force for wanting to keep fighting and moving and never give up. During my darkest hours, I have relied on her love and smile to give me strength to hang on for one more day till the storm passed. In life there are many substitutions for things, but there will never be a substitution for a mother’s love!

Happy Mother’s Day to all the beautiful women out there..cherish your kids, they truly are a gift from GOD!