Embrace the Possibilities: by Maria De León

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As we reach the end of another year, one thing is certain the one thing we can count on is change. Seasons change, fashion changes, friends come and go, our goals, our likes dislikes change and our health stands in the balance of a see-saw not knowing when we will go up or come down.

When I was staring my medical career, I knew I was in for a long haul of commitment and focus. I needed to get myself prepared for what laid ahead mentally. So my best friend from childhood and I decided to take a trip to Acapulco. No better way to replenish the soul and mind than by sitting at the edge of the ocean contemplating and listening to the sound of the  waves. After 27 hours, we finally arrived anxious to enjoy the beach, my friend and I ventured out in the evening as the sun was going down and the tides were beginning to pick up. Yet, all we wanted was to bask in the view and maybe get our feet wet a bit. I carefully laid out my beach towel, my clothes, sandals, and other possessions, I was about to sit on my towel when a huge wave crashed upon the shore engulfing my belongings. Our carefully chosen spot had proven to be not far enough from the rising evening  tides. Apparently, this was high tide season. As the waves retrieved, it carried with it all my possessions leaving me mystified.

As I watched all of my things being dragged into the ocean, I took off running after it. It had taken my wallet. However, the waves were not only faster but retrieved deeper into the bay. As we sat there a bit dumbfounded about how quickly it had all happened taking us by surprise and resigning myself that on my first day I had lost all my money.  When a few minutes later another huge wave happened upon the shore bigger than the first one as it crashing briskly upon us and the rocks but as it retrieved I began to notice a resurfacing of my things. Quickly my friend and I sprang to retrieve my wallet first before it could be engulfed again perhaps this time never to be seen an de completely ruining my vacation. Of course, everything was completely soiled. The large beach towel was filed with muddy sand, seashells and a few small crabs. I did not care all my things were back.

This event thought me that sometimes the change of the tides can take us by surprise leaving us discombobulated and dumbfounded, wondering were to go next or what to do.

But, just as surely as the sun rises and sets, if  we just keep breathing staying alive fighting for the things we want and keeping a watchful eye eventually the same tide will come again bringing back that which we thought was gone and lost forever. Better yet giving us a way to move from the shore to new lands and dreams because at some point all of us have to move person past the crest line.

as we start a brand new year with 365 blank pages to fill, remember that although we are not in control of when the tide comes in or how big the crest of the waves are, we are in control of how we allow the tides of life to impact us. In the same trip a couple of days later, my friend and I decided to eat at this mom and pop makeshift restaurant on the same beach while we ate barefooted. I enjoyed the coming and going of the waves past my feet underneath the table where we sat. To this day I savor the thought and wish to return to that place.

So as you find yourself face to face with an unexpected tide which might leave you Topsy curvy rather than panic or give up; wait awhile the tide will eventually change allowing you to move forward an din doing so take inventory and breath in the endless possibilities. Notwithstanding that It is our impossibilities that become our greatest gifts – it certainly has been the case for me having reinvented myself and enjoying my life fully despite living with pd for a decade.

Trust that nothing is ever wasted and in the end if you allow yourself to embrace the changes that the tides brings you will emerge softer, gentler, kinder, more courageous, and stronger than ever.

Happy Holidays!

@copyright 2017

all rights reserved by Maria De Leon MD

A Year in the Parkinson’s Diva Life: By Maria De Leon

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A woman is strong because she has been weak; she is beautiful because she knows her own faults; and lives without fear because once she was afraid.”

Carolina Herrera

As we draw near the end of another year, I am prone to reflect on the good, the bad and the ugly that which has greatly impacted my life. Not everything that touches us or makes us who we are is necessarily good or at least not on the surface.

This year has been a year of great losses for many of us as well as great victories. Is my experience that these usually go hand in hand. The triumphs allow us to get through the sorrows and hardships while the devastating moments make the victories that much sweeter.

The year started strong with me finally getting better after last year’s pulmonary embolism and TIA (mini stroke) which took me nearly 6 months to fully recover.

Then it suddenly took a turn for the worst with my best friend being diagnoses with stage 4 cancer! a week after we had made all kinds of plans for the year…

Got to travel to DC see old friends, make new friends, and even meet a few celebrities such as MJFox while advocating for changes in public policy to improve research funding, and better more affordable health care at Capitol Hill.

Traveled to a new country with my husband and daughter and found the perfect city that made my hair look fabulous because there was no humidity. Who knew my hair could look good first thing in the morning?

After much prayer and seven long months of grueling chemotherapy and bone marrow transplant, my friend is finally cancer free- confirming that miracles still exist!

Saw two of my nieces and nephews graduate – one doing a master and one started college and i got to play the fun Tia (aunt) role throwing parties and even traveling with my niece to her new university. Since it all is connected somehow, I got to meet my new friends (Kate & Chris) at Health Union where I am now a contributing author on the health communities of  http://www.migraine.com and http://www.parkinsonsdisease.net; where I am cherishing the opportunity to work with like minded individuals who are just as passionate about making a difference in someones world.  For me doing something that I love doing aside from Parkinson is also a huge plus.

Let’s not forget that this year, we celebrated 200 year’s since Dr. James Parkinson annotated his observation on a disease we now call by his name. As such, I was a part of a huge campaign to bring PD awareness to the Hispanic community in this country by appearing on sites like Dr. Isabel show on Univision and was broadcasted around the country through the radio to several Spanish speaking station from Texas to Florida, Georgia and the Carolina’s. Plus, I now can boast of having two published books with my latest Spanish book on PD – Viviendo mas alla del parkinson was recently published.

Of course before the summer was over, I was down for over two months with a viral infection after seeing my doctor the day before, where he complimented my good health and said i did not need to see him till next year. Famous last words! this little viral infection caused me to miss my opportunity to travel to South Dakota. Fortunately, I was able to at least virtually meet a few of them including saying hi to my friends whom I like to call ‘the Mary’s!’

Lost an old friend and regained an old friend. But, as I was driving around the other day dropping off  and chauffeuring my daughter and classmates all over the place I realized is not such a bad life. Sure I can’t multitask to save my life, can’t remember even my own name a couple of hours after taking amantadine or even where I opened a bank account – “at some bank on a corner street”, I told my husband. “Which corner?”, he asked extremely perplexed since there is one in nearly every corner. “I don’t know,” I said. “I am pretty sure I will know when I see it.” Not comforting words to my husband or any other man.

I get frustrated easily and my goodness the heat is unbearable dripping droplets of water from my forehead on a regular basis but not a drop of fat lost- husband’s theory is that my body is conserving its nutrients because I seem to go into starvation mode for a few days at a time when my gastroparesis is at its peak. At any rate, I have learned to appreciate my curves and the moments when I am totally ‘me’ feeling as good as any young healthy person would – for which my husband has dubbed my life as the Curious Case of Maria D. When I am on top of my game and not choking on my own saliva and not  tripping over myself or running over the garage- I seem to be getting younger and stronger in his eyes!

Perhaps, I am not afraid of PD because I was once consumed with fear of the unknown; it no longer has a strong hold over me. Thanks to PD, I have learned to be more forgiving of mine and others shortcomings and have learned when to rely on my strengths and when to ask for help because I am weak- which happens a lot. I constantly get inspiration from strong, independent, beautiful, intelligent Hispanic Women who happen to be icons in their own fields such as Isabel Allende, Carolina Herrera. i identify with the latter because she began her career  in her 40’s, at an age when I too had to make a new transition in my life from physician/clinician to writer/motivational speaker and most important of all patient advocate.  And like her, I believe that fashion is an outward expression of ourselves free and unencumbered. But, the best garment any woman can wear is knowledge.

Aside from all this things for which I am truly grateful,  one of the greatest gifts and joys has been able to share my journey with all of you.

Thank you & Happy Holidays to everyone!

XOXO

@copyright2017

all rights reserved by Maria De Leon

3 Tips to Making the Most of the Holidays: By Maria De Leon

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“People change when they realize they have the potential to change things.” Paulo Coelho

Here we are again approaching what many people feel is one of the most stressful periods of the year although its intention by design is to be one of a joy. Adding a chronic illness to the mix can make things more volatile even in the best of circumstances.

As a neurologist, this was always the season I dreaded because I knew that I would have to take care of many sick people whose depression, loneliness, hopelessness, and general stress invariably exacerbated an underlying chronic illness causing them to decompensate.

In order to avoid this scenario- the following should be considered.

Have a plan

This means you have to be realistic about your health and family situation. If traveling is difficult ask members of family to come over to your place instead. If this causes too much chaos or is not feasible for others to travel either then consider gathering with close friends or a smaller gathering with loved ones.

As most of us that live with chronic illnesses will attest to the fact that mornings are usually not our best time. So don’t kill yourself trying to have everything ready by lunch time. Take your time, and ask to meet later in the day when you are more likely to be at your best to enjoy the fellowship. Focus on fewer but more meaningful interactions. This way if you have trouble speaking you can more easily focus on one on one conversation. Make sure to maintain eating and medication schedule throughout the holidays.

Do things that make you Happy

This year my family and I have decided that instead of rushing to see other relatives, not knowing how I will feel that day while feeling pressured not to let anyone down especially since those members have schedule constraints, we will leisurely arise and enjoy a meal at home. I love watching the Macy’s parade, this year I plan to enjoy it in my p.j.’s sipping some hot cocoa with my daughter and nephew by my side.

Rethink the Big Picture

Before you commit to anything, ask yourself what are the pros and cons of doing whatever it is you are doing? Will these activities give you purpose and joy or leave you more frustrated and worn out? Or worse cause you to decompensate physically? Having a clear purpose in mind can be extremely gratifying as well as help reduce stress and burden brought on by PD. My main purpose now is spending as much time as possible with my daughter who will be leaving for college soon. Making her happy and enjoying her company is my principal motivator for making this season the best ever.

Find your purpose to enjoy the holidays this season which will leave you not only with great memories but a sense of well-being.

BEST GIFTS ARE THE ONES THAT SPARKLE!!!! So let your inner DIVA sparkle this holiday season!

 

Painting by Ross Webb

@copyright 2017

all rights reserved by Maria De Leon

Singing the “blues” away: by Maria De León

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“If you are feeling BLUE try painting yourself a different COLOR!” -Hannah Cheatam

We all have episodic feelings of the blues, feeling blah or meh; but how we cope and deal with these feelings are as crucial to our happiness and well being as air itself.

The other day after being sick for nearly 3 weeks, I was finally on my way to feeling physically better. However, my emotional state did not seem to have received the memo. I awoke completely refreshed physically and energized for a new day  but I was just feeling blah inside. Perhaps, I was now crashing after having been so hi on steroids.  Whatever the reason my insides were not matching my outside was not as important as figuring out to how to overcome that feeling of  genuine indifference.  Yet, despite this general lack of care, I had a little voice inside of me that kept playing the words… “tell you what I want, what I really really want..” (Spice Girls- Wannabe) before I knew it  I was uttering words out loud without much feeling initially.blue ocean

I was not about to let the feeling of nonchalance get in the way of  enjoying the gorgeous cool sunny day. So I opted to start singing softly at first then louder. Since I was not particularly feeling happy, I began to think of songs with the word ‘blue’ in the title and thus began my recovery to actually feeling happy inside. After singing a few lyrics from such songs like blue velvet, blue Christmas, my brown eyes blue, blue bayou, blue moon,  and blue (da ba dee da ba daa), I actually began to feel happy and dance moving shoulders, head and hips. My ‘blue’ song repertoire took a turn for a more upbeat selection beginning with Pharrell’s Happy song.

As Bob Marley once said, ‘music when it hits you it goes straight to the soul.’ I discovered that music in its purest form can express that which is silent within us  and in doing so it can lift our mood  by releasing a cascade of happy chemicals starting with dopamine.

In less than half a day I was dancing singing and feeling whole and myself again.

So next time you too feel like everything is blue and all you want to do is shrug your shoulders and throw your arms up in the air because the meh feelings have taken over start humming and singing even if it’s a few chords of sad, depressing blue songs and move to a more up beat repertoire and before you know it you too can beat the ‘blues’ trough song. May be we can start with “you don’t owe me” Parkinson’s and go slowly (despacito) from there.

Copyright@2017

all rights reserved Maria De Leon

“How Do You Solve a Problem like Maria?”: by Maria De Leon

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When life gives you lemons -you make lemon meringue pie…

For the last few weeks, i have been so excited about going to South Dakota to a Parkinson’s retreat in an abbey and all i could think was ..running up a hill singing “the hills are alive with the sound of music…” from one of my all time favorite musicals and beloved character because it not only happens to bear my name sake but is the first movie i recall seeing with my grandfather as a child in Mexico.

But as usual, when I get too excited about something as of late PD always rears its ugly head. so perhaps i should have written how do you solve a problem like PD?

That’s the million dollar question, although no solution as of yet we have to still find a way to make margaritas, pies, lemonade and whatever else you can think with the citric juices of lemons that sometimes having a chronic illness leaves us with.

Although, the theory of PD being immunological is not proven, I am a firm believer that at least in those of us with LLRK2 phenotype do seem to have a higher propensity for getting immune based illnesses like UC ( Ulcerative Colitis),  and other immune mediated disease like thyroiditis and diabetes. ever since i been diagnosed with PD my immune system has been more chaotic than ever leaving me more and more prone to any and all viruses and bacteria circulating about which for the average healthy person would not even have a minimal reaction. But for me a common viral upper respiratory infection it leads to a whole cascade of problems and a new one this time around.

As all of you who live with PD and other chronic illnesses very well know it takes twice as long to recoup from any minor illness than normal people do. One way i have learned to cope with this is make sure start treatments ASAP, drink lots of fluids, rest and take extra vitamins, and levodopa to decrease length of illness which typically works fine. this was the strategy since i got sinusitis infection over 10 days ago knowing full well that i have a huge list of commitments and especially looking forward to traveling to see old friends, meet new ones and run up the hill although with the cough and bronchitis I developed i figured i would be more like a slow crawl. nevertheless, I was optimistic surely I would be all back to normal in more than 10 days time.

Well, little did I know that Maria an unsolvable problem by itself combined with my old pal Parkinson’s would come in to wreak as much havoc on me as it did in Puerto Rico. I am always amazed how many new symptoms of PD I am discovering as a patient that I never knew as a doctor specializing in this disease. I have treated many a MS, stroke, and spinal cord injury patient with dysautonomia- in other words dysregulation of the autonomic system. This is where a mild or seemingly innocuous event like a viral infection can trigger a whole host of responses from the body worst than infection itself. typical triggers are dehydration and bladder infection. Even in the multi system atrophy (MSA) patients who commonly have this problem, have I ever seen such an exaggerated response.

In Parkinson’s patients the dysautonomia is usually confined to abnormal functioning of bladder. But, never in my years of treating patients have I seen a full blown decompensation of organs which are regulated by autonomic system..means all the organs which secrete substances like the pancreas, heart, bladder, sweat glands, gut and so on. So i am experiencing horrific chest pain , breathing problems with increasing mucous production, severe palpitations, increased heart rate, nausea, increased tremors, and profuse sweating. Even though I am freezing to death feeling like I am inside an ice box. so in the middle of 80 degree weather, I am looking ridiculous, as per my daughter, because  on top of all my layers of clothing I have a coat and walking around with a faux fur blanket trying to keep warm. Plus, I am trying to keep my sugar from dropping by forcing down food.

When patients with this problem have an infection they have an exaggerated response of dealing with infection as was my case- having higher fever, increased exaggerated sweating, chills and rigors. But, interestingly and another one for the books is that my cold symptoms were much more unilateral making me think i had a thalamic stroke (organ in brain involved in temperature regulation) or a lesion in my spinal cord. but, after consulting with 2 other movement disorder specialist we came to conclusion it was most likely the PD; although never seen as affecting one side more than another- hence unsolvable Maria problem.

But, as I am always an optimist, I feel that my misadventures have once again left me with a new lesson to impart to all my fellow Parkinson’s patients. should you ever have this problem – don’t panic. But, if having symptoms need to talk to doctor ASAP because it can potentially be life threatening. We treat symptomatically.  This means lots of hydration, high salt diet, head elevation, sometimes requires iv fluid replacement and medications to increase blood pressure like midrodine, flurocortisone.

And of course treat underlying cause which triggered problem in my case upper respiratory infection.

On the positive side, I am hoping that all the sweating has shrunk my waist line a bit or at least partially counteract the effects of the steroids given to me – which thankfully helped to increase my blood pressure and my sugars to prevent me from crashing.

So instead of running a a hill– i will stay home and do conferencing via skype discussing how to solve a problem like me and pd.

 

Source:

To learn more about dysautonomia go to…

  1. ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

 

 

 

Do it with passion or not at all: By Maria De Leon

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“It takes a glacier about a year to move, but eventually it carves out canyons.” Perseve(red)

Since the time of Ancient Greece, a life full of passion was one worth living well. Whether or not the ancients had eulogies at funeral is unclear. However a man’s life might still have been measured on what drove him- the amount of  passion or ‘pathos’ he possessed – that which made him go all in. In other words, what is it that makes us fearless in pursuit of what sets our souls on fire? For me, I have 3 passions God, my family and Neurology in particular working with those who live with Parkinson’s in their lives.yo y mi libro diva

In the last few weeks my love for PD has been fueled as I have traveled north to drop off my niece at college.  I got the opportunity to meet various Parkinson’s advocates like Chris and John from Philadelphia who graciously opened their hearts and their homes to me and my family for an enchanting evening of conversation and entertainment. I also had the great pleasure of meeting two wonderful people Kate and Chris part of a great social media medical community of Health Union who not only have shared their passions with me but granted me an opportunity to continue my passion for writing about the things I love while helping the PD and migraine communities. Plus, I am super excited that my Spanish book on “living beyond PD” (Viviendo más allá del Parkinson) will finally be making its debut in the next 4 weeks. Plus, I am always completely at awe and stoked to be able to come to you in this humble way to share my life with you so as to provide a ray of hope and sunshine because no matter how strong we are we all need to be loved and cared for. We need each other because we all have days when all the digging and struggling only makes us more muddled.me chris and stephanie

However, as I have fallen many times flat on my face and risen again to fight another day, I have confirmed once again that having and living with a chronic illness like PD does not have to decrease our interest for living, succeeding and dreaming. Life is what you make of it -weather we live with an illness or not have Parkinson’s or something else we all have struggles, hardships, and traumatic events which can propel us forward to a better tomorrow or crush us if we let it.  I have been given the opportunity to travel to South Dakota to do a weekend retreat at an abbey for those who care for someone with Parkinson’s as well as for PD patients which will include exercise classes, and educational classes to teach other the skills of living well beyond their own limitations brought on by the disease.me john chris

Please don’t let the shock and pain you are experiencing g today make you numb for the rest of your life. Even if you got nothing left, find your purpose maybe start by reaching out to your neighbor or friend who has less than you. The storm brings forth character, integrity, honesty especially when comfort is removed. The first step in sorting g over or getting back up is up to us. So, don’t wait for others to rescue you first, rather make your first step in improving your situation and others will join in to help. Remember none of us can do it all alone or know it all. But everyone knows something, can contribute something to our lives. So go ahead and start small. Who care how it looks? Ask for help when needed. When I first began this journey I could not even walk had to use a walker then a cane. I needed help to do most activities including dressing myself. This is not a race or a competition but it is about being empowered and finding yourself  as you push through the darkness into the light as you find your purpose, your own passion that will make you defy all the odds and come out victorious. But the driving force can’t be just anything – it has got to be BIG enough, strong enough and powerful enough to propel you forward.

What drives you today to keep moving? Do you have the passion to go all in and fight as if your life depended on it because it does?

sources:

Be Inspi(red): words of Hope and courage 2007 by Hallmark Licensing Inc.

@Copy right  2017; all rights reserved Maria De Leon

Where is your sight fixed upon today? by Maria De Leon

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“Have Mercy on us, O Lord, have mercy on us, for we have endured much contempt.” -Psalm 123:3, NIV 

I had not written much as of late being preoccupied with and distracted by the occurrences that have been shaping our lives around our communities, cities, country and world. I am sure like many of you, I have spent many hours glued to the television set wondering what will happen next? I have been pondering about the options we have when confronted with catastrophic events in our lives as we have seen in the last several weeks. Are many of us prepared physically, emotionally, and spiritually for the challenges ahead?

I pray that you are, if not I hope this gives you new perspective.

Are we feeling victimized or helpless by our physical inabilities ? Have we been experiencing particularly low morale? Sometimes is easier to focus on the MOST obvious- the raging storm around us! But, no matter our circumstances because eventually all the life storms pass on by. Therefore, we must learn to see beyond our PD and our present circumstances. We must develop a higher, broader and deeper vision for our lives. How do you envision your life in a year? 5 years? even 10? Are you a person with a glass half -empty or half -full?

So, today as we start another day/week full of uncertainty- I humbly ask God for His mercy in the presence of physical danger and emotionally crippling thoughts of being at the end of our rope for you my friends, family and loved who might just be feeling overwhelmed or contemplating giving up. Although, I am sure many of us are feeling dejected and completely fed up with the surrounding circumstances of our illnesses, mental and physical disabilities in the face of extreme danger and would give anything to be able to simply walk away from it all. This is not always possible and our only choice is to ride out the storm until the end.

However, I want you all to find comfort in the story of  Jonah who thought the end had come as he was engulfed by the deep waters, wrapped in seaweed, and swallowed by a big fish. Yet, once he gazed upward and ceased focusing only on his circumstances, he discovered his purpose in life despite being still in the belly of said fish.

Thus, even though we may feel we have lost the battle and may feel imprisoned by our circumstances and our diseases, this is the time we must look beyond ourselves. We must direct our gaze upward and cry out, “God I need your HELP!” I can not do this alone. I guarantee that if you do this, you will come out better than when you first began.

Finally, as we start a new week, I leave you with the knowledge that you alone have the power to choose weather you will remain imprisoned by the cards you were dealt or will you find a way to make the best and become a conqueror.

P.s Stay safe everyone and make sure you have all your medicines (list as well), doctor’s phone numbers and a ready bag which includes water, snacks, flashlight, ready cash, underwear/protective undergarments, deodorant, soap, shampoo that does not require water, toothpaste and toothbrush, shaving kit for men, any assistive devices, a small tank of o2 if on oxygen, change of clothes. This should also include your important papers like passport, etc.

Much Love,

Parkinson’s Diva

@copyright2017

All rights reserved Maria De Leon MD