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.

@copyright2020

all rights reserved by Maria De Leon (aka Parkinson’s Diva)

Developing a New Vision for the New Year!By Maria De Leon

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“Where there is no vision people will perish.” Proverbs 29:18

This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctors’ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinson’s (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinson’s diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test …I have learned that in life like in science nothing happens overnight. We must learn to wait on God’s time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples life’s better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you don’t give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus Test…We can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- “I can & I will”

So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.

Happy New Year to all my friends, families and followers!

@copyright2019
All rights reserved By Maria L. De Leon

Thanksgiving in the midst of adversity: By Maria De Leon

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“In all things give thanks…” 1 Thessalonians 5:18

As the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of my ongoing ever complex not one but two chronic illnesses. Having now been diagnosed with lupus as well!

This year has been a year of many important milestones- celebrating 20th anniversary, turning 50, getting the opportunity to be a ‘starlet’ for a week, reuniting with long lost friends, honored to give first all women with Parkinson’s conference in Indiana, had the honor to be part of an avant-garde weekend retreat for Parkinson’s patients and their caregivers in South Dakota with nearly a 100 in attendance, being part of a pilot program to help young women to grow spiritually, learn life skills, and be empowered in the midst of their circumstances in order to thrive as successful adults turning into tomorrow’s fearless mothers, wives, friends, professionals and leaders. Finally, I also had the privilege of having my ‘parkinsonsdiva’ blog be recognized twice as one of the BEST! In the PD community (This of course could not happen without all you wonderful people (women) who take time to read it and make it one of the best! thank you!)

I was touched by one of the most beautiful common experiences which took an unexpected twist for a memorable and meaningful events of my life just when I needed hope and encouragement the most.

We all know that most of our lives are punctuated by peaks and valleys and although we wish we could go from peak to peak there is still something beautiful and comforting in the valleys. The valleys in biblical times is where one was most certain to find God and healing could commence from inside out. But aside from finding salvation in the least likely of places, we also have signs that continue to inspire us and gives us hope in our daily walks. When my dad was terminally ill, I witnessed the most magnificent double rainbow as I was driving home full of tears on my way back from the hospital and upon seeing such spectacular view I felt at peace and knew everything was going to be okay.

Four years later, about the same time my dad started his downward decline I began to have serious medical issues which have been taking me away to some extent from you and the things I love. Yet, on my way back from a very long and arduous trip to the hospital and a slew of specialist as I dosed off while my mom drove, I saw the edge of a rainbow. I wondered out loud if anyone had ever seen the end of a rainbow- after all they are said to be full circles which I had privilege of seeing once before in the Las Vegas. Perhaps there instead of a pot of gold I could find a greater treasure like health once more.

Suddenly, I began to see one rainbow after another all sizes and brilliance and then we came to the end of a rainbow it merged right into the spot where our car was standing at the light but if you looked up it seem to sprout out of us from inside the car. I sat up and marveled at the phenomenon but in the next 40 minutes of our journey this occurrence took place at least 4 more times.-lifting my sadness, and strengthening my weakening resolve to keep on fighting for the people and the things I love most. Just to let me know that these signs from heaven were not mere coincidences that he still was in control of my live and my well-being and that my faith in God had been duly noted for once we arrived to a sunny home leaving rain behind- when I stepped out once more as the sun was beginning to set amidst a purplish sky there it was once more a splendid rainbow across the sky.
You may say, how can I give thanks living with PD? Or how can I find joy in my present circumstances? Believe me, I understand your trepidation. Is not easy to feat to face our fears but you can do it because you are not alone. We (especially me) are here to share the rainbows with you to help find your inner peace and conquer the valleys of loneliness, illness, frustration, and hopelessness. As I have learned to conquer my fears of living life with a progressive debilitating illness and face head on an uncertain future by believing in God you too can find harmony and give thanks in the midst of adversity.

Although, there have been many losses I have also experienced many great things this year when is all added up the pluses will definitely outweigh the negatives. I continue to be grateful for my health however failing it maybe at times, my family, friends and the whole Parkinson’s community who has invited me into their homes.
Thank you,
Parkinson’s Diva
Happy Thanksgiving!!!!

Copyright2018
All rights reserved by Maria De Leon MD

Rhapsody of a Diva: By Maria De Leon

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“We are the champions of the world. We will keep on fighting till the end…” (Queen)

Over the last few weeks, as I have tried to make sense of my life in light of my seemingly endless medical problem list; I have had plenty of time for introspection as I lingered around the house in my pajamas watching movies when not in pain, nauseated, or having fever and chills. My favorite movie genre as of late are those based on real life. In my moments of feeling better and not having to see a doctor or get yet another test done to figure the conundrum that is my illness, it occurred to me that in life the most beautiful things usually come out of the darkest and most painful times our life’s.

Throughout history we are reminded time and time again that the things that inspire and endure the test of time are those that arise from the ashes of near annihilation.

I love the story of the thorn bird legend, although believed to be purely mythical, is the perfect embodiment of a notion that greatness can only be achieved by walking through fire or standing in the lion’s den. The Celtic legend, upon which the story is supposedly based on, says that there lives a “bird that sings more sweetly than any other on earth as he dies that even God in heaven stands still and smiles.” While dying he rises above the agony of his pain caused by being impaled on the sharpest thorn. Such examples of greatness can only emerge out of the fiery ashes. The outcome of such struggles of the soul, if we are courageous enough to stand and fight, typically bring forth redemption, self-love, understanding, and compassion which permeates throughout in the same fashion in which the light casts its warmth upon a dark cold room when the window is open to let sunshine in. A small light can illuminate even the darkest of rooms but a dark room can never overpower even the faintest of lights. So keep on fighting even if you feel like you don’t have the stamina to go on….
The greatest feats and gifts to mankind have been borne out of despair, hopelessness, uncertainty and loneliness.

Beethoven composed his 9th symphony “Ode to Joy” when he was totally deaf. Van Gogh painted “Starry Night” in the midst of a mental asylum cell, the apostle Paul wrote his most powerful letters while imprisoned and our salvation was bought at the ultimate price of pain and agony on a rugged cross.
What will my legacy be to this world and my children be? I wonder. Will my life be an example of courage and triumph? What will yours be? Will you wallow in your pain and stay a victim? or will you like many before us have the courage to conquer and not be defeated by our present circumstances?
As for me: through the grace of God I have discovered courage in the midst of my never-ending battles with physical illness along with a renewed sense of purpose and hope.
So I sing to myself… “What a wonderful world!”
Will you sing too with a new sense of purpose?

I love to hear your stories …would you share with me and others so we can all gain courage and strength by knowing we have been able to overcome thus far.

Many Blessings to all on this beautiful day.
Love,
Parkinsonsdiva

@copyright2018
All rights reserved by Maria de Leon

What I have been surprised to discover while living with Parkinson’s disease? By Maria De Leon

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The other day, I dreamt of God above – He smiled and said: ‘don’t worry, your faith is strong; you know you have been here before. Just gaze upon my face and everything shall be alright.’ I smiled at HIM and softly uttered a broken Hallelujah! – Alleluia. Alleluia
Although, my faith IS strong and has grown immensely over the last decade somedays it seems that the dark clouds in life want to hang on just a bit longer than usual putting all our beliefs to the test.
This seems to be the case for me over the last month.

So, I had to remind myself of how far I have come and all the challenges I have endured in the past which have only served to make me stronger. I like to think of the peaks and valleys we have gone through in our life as a mechanism to help us get through things faster and with greater ease. (Just like the brain network is connected via myelinated sheaths which help disseminate information quicker from one area to another- if we would interrupt the myelin, information would surely get delayed and we might even find ourselves stuck. Such are our past experiences, the more we have overcome the greater ease we have of moving forward…)

I have learned that God is strongest when I am weak.
I have learned that I am much stronger than I once thought and much more resilient than I ever gave myself credit for. I thought I would never survive the first diagnosis of a chronic illness, nor giving up my practice. Yet, here I stand …
Despite years of trying to hide my physical flaws, I have learned to embrace those blemishes, scars, and all. I have learned to focus on my most attractive features which are my smile and my “Spanish” eyes.
I have learned to love myself strengths and weaknesses. After all beauty begins when we first decide to love ourselves. At times, we must learn to turn our weaknesses into strengths. For instance, once upon a time I was extremely shy and afraid of speaking in public (hard to believe I know). I would become paralyzed with fear of being judged. These days however, I embrace it fully. Public speaking has been a source of great joy in my life as I seem to have become the voice for women with Parkinson’s disease and other chronic illnesses.
I have learned that we all have the inner fortitude to do what you could not do before- I am learning to wait in silence and developing beaucoup patience!
I have learned that you will feel what you did not before- sympathy, empathy, kindness, love, gratitude…
I have become knowledgeable on things I never knew.
I have also learned that inner beauty never fades.
I love being a mom.
I am creative after all.
I am a trendsetter and fashionista at heart.
I am excited about living life to the fullest.
I cherish my time with my girlfriends.
Beauty and inspiration come from places we least expect.
All women are strong beautiful and able and we were fiercely made for a time such as this.
So go ahead find your passion and bring out your inner beauty by discovering new horizons and gifts within yourself. Despite what you may be facing today- you are not alone, you are loved, and this too shall pass! You just have to hold on long enough and keep the faith.

@copyright2018
all rights reserved by Maria De Leon

The Beauty of Self-Care: By Maria De Leon

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“Self care is not self indulgence. Self care is self respect and an act of survival.” Lorde

I am not sure about you ladies, but as of late I have been wobbling on an emotional precipice between the recent negative medical news of my husband, my daughter going away to college (perhaps far from home in a world where there appears to be increased chaos at each turn), my mother’s declining cognitive status, and my own current relentless wave of medical trials and tribulations. Sometimes as my dad would often say, “too much is too much.”

My natural inclination is to push forward on all fronts no matter how I feel. As a physician and a mother, I am used to taking charge during a crisis and stepping up as the caregiver placing my own needs at the bottom of the list. However, throughout my years of living with PD, I have discovered that not prioritizing myself however only leads to a slippery slope. My bottled up frustrations, stress, and malaise have a tendency to creep up to the surface like an erupting volcano seeping through every pore of my being (Curse you Parkinson’s disease, migraines and whatever other medical problem I have) causing me to become the true epitome of a fiery dragon. Just like a volcano can no more contain its pressure so do our feelings must find a way out – unfortunately when they do they cannot only be explosive but extremely lethal causing devastation in its wake, as we have seen in the news last few days with the eruption of Kilauea.

One of the things I always talk about in managing this chronic and any chronic illness is self-care and prioritizing once self. Easier said than done especially when you got all the burners on.
So, in the midst of all these new challenges, I have had to force myself to find time for me to heal in order to continue caring for all those who depend on me and get to the root of my ailments. An-empty-lantern-provides-no-light_-Self-care-is-the-fuel-that-allows-your-light-to-shine-brightly_-Unknown

Of course, this is much more difficult when you look and feel like you are ten months pregnant carrying twins! Yes, I got a partial small bowel obstruction-yikes! How did this happen? I was doing so well? For starters traveling lots, not keeping schedule on meals, along with increase stress did not help and possibly aided in my current predicament.

First order of business besides getting rid of relentless nausea and vomiting and prevent dehydration while reliving obstruction was to disconnect from the world- hence my lack of presence in social media as of late. I have also committed myself to spending more time with my daughter talking…this time is priceless.
Reminding myself and my family that frivolous time spent on one self like reading a favorite book, doing art, laughing with a friend, watching a favorite movie, listening to great music, or simply resting actually does more for the healing process than medications at times.empty cup

I have caught up on sleep. Allowing myself to sleep as much as my body needed to recover. I am doing better but not 100% back to ‘normal’ yet. Even in my “pregnant” state, I have continued my breathing treatments and meditation. These have helped me tremendously in calming my pain, anxiety and discomfort of having a huge belly.
I even had a manicure just to feel better- bright pink! Plus, even though I have been feeling like crap for the last 3 weeks, I found that doing some talks over the web helped my mood and my overall predisposition. Bringing smiles to others always brings back positive vibes into our souls.

Remember, that if we want to be ambassadors for those who have a chronic illness like PD and bring positive changes, we must first be good to ourselves and be happy behind the scenes when just you and no one else is watching. Do the things I have recommended often, like take time for yourself every day, make time for family and loved ones, do things that make you happy, pamper yourself (there are many ways of doing this without going broke). If you feel that the world is spinning out of control, go ahead and inject some kindness back into it.
Love to hear your own self-care strategies in dealing with chronic illness.

self care
Xoxo
Parkinson’s Diva

copyright@2018
all rights reserved by Maria De Leon

Gordilocks & the 3 Couches: by Maria De León

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‘Gordilocks’ as my brother likes to call me sometimes playfully (meaning Chunky locks) is the way I feel lately and my house is a veritable simile to the well known story of Goldie Locks and the 3 little bears.  Each time I enter my living room I feel like this beloved character testament trying to find the ‘just the right’ piece of furniture to fit my needs of the day which vary according to my pd symptoms. In my story, lately I feel not only like Goldie locks but seem to have acquired some of the characteristics of the bear not only in growling but also in time spent hibernating, the latter due to inability to tolerate the slightest chill or wind breeze.

What is gordilocks supposed to do when forced to spend so much time indoors in one place? Go from room to room trying to find the most comfortable place and position.

Subsequently, I have accumulated 3 different color and styles of sofas one living area which was never supposed to be the case. Well at least despite the eclectic look they work well together. It all started with one comfy sofa bought specifically for me because of my constant back pain at the onset of my PD. This couch allows me to recline comfortably at least that was the case several years ago; however it’s springs are starting to wear no longer as comfy for me as it used to be. As my symptoms have progressed, the fact that it seats rather low makes it that much harder to get up from and sit in it without rocking back and forth or plopping yourself on it.

For these reasons, about a 2 years ago I decided to go in search of a replacement and thought I had found the perfect sofa. It’s longer, taller and wider. Yay! It provides great support for my back when laying down; but when I sit it causes my legs to go numb because of my short legs causing the edge of couch to press on my peroneal nerves.  Fortunately, papa bear and baby bear both like the first couch so they did not let me get rid of so it continued to have it’s place in our family room. Then with all my bouts of recent illnesses, I have been forced to spend more time not only being house bound but bed bound as well. To break monotony, I go from bedroom to family room. One night after a very rough couple of weeks, I was so frustrated with my back pain, stiffness, inability to get of couch and over all uncomfortable chaises, recliners and chairs, I decided to order a new sofa on line, since I had not found one in any of the local stores and Houston was simply too far to travel to in my condition  Oh boy! not recommended- what was i thinking? i was not – i was desperate. I spent hours looking at websites with hundreds of styles. Finally, at last I found one I thought I could live with and designed to complement the one I was planning on keeping.  The much anticipated delivery  date arrived and the sofa proved to be  extremely comfy as well as beautiful. but there was one tiny little problem, it was not a couch it was a slightly bigger loveseat. Turns out that  in all my mental fog caused by the pain, I took the wrong measurements for the custom sofa.  now i had a third sofa that was too short for me to lay down in and because it mas specially made no returns were allowed.  It would be a perfect doctors couch if i only could recline in it as i would like.

Now, my family and i laugh at my collection and each have been assigned subconsciously a couch that is just right for each member of our house. Funny thing is that i still spend most of my time on the couch i have been trying to replace for several years. so, the little sofa is my daughter’s favorite seating  when we are together in family room; my husband has the big sturdy couch and i am left with the softest one, even if it does not fit just right!

Will someone give up their couch to make room for a new one? Well, perhaps when my daughter goes to college i might be able to scramble furniture around. Till then i will continue to test each and everyone of them each day to find the one that is just right for me.

@copy right 2018

all rights reserved by maria de leon md