Category Archives: making most of PD

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. dysautonomia – ninds.nih.gov

    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

 

 

3 Rules to Avoid Confrontation with your Partner when Chronically ill: By Maria De Leon

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“The good and the bad mix themselves so thoroughly in our thoughts, even in our aspirations, that we must look for excellence…“ Anthony Trollope, He knew He was Right

Most of us marry someone who is our opposite which is what makes us work as a team by bringing different assets and points of views into the relationship. However, if 3 important rules are not established or discussed, as we get diagnosed with a chronic illness or as Parkinson’s progresses (in my case), there maybe a build up of resentment, quiet seething, and increasingly snide remarks along with looks that could kill if given half a chance.  So, instead of working as a team our contrasting ideas, and managerial styles can lead to friction which can pull us apart by making us feel alienated; as if we were working alone towards different goals.

I have seen this over and over in many patients and friends who both feel as if the other did not care when it fact both are committed to achieving the same goal- well being of the patient and stable, happy marriage. For instance, a wife after suffering a devastating illness in which she has practically been hospitalized for nearly 6 months has left her completely devoid of any will power physically, emotionally, and spiritually she is at the border of giving up from pure exhaustion. What she needs is complete rest and time to process everything she has gone though without anyone fussing over her. Yet, her fears are making her clingy and desperate putting her husband on edge. Husband recognizes depression and her need to talk to someone so he asks doctor for a counselor to help but she refuses the much needed intervention.  His managerial style is to find a solution to her beloved wife’s problem depression which is causing her to not eat and wither away more. After being by her side day in and day out through out the entire ordeal, he too is in desperate need of respite.

Sometimes because of different ways of approaching the situation it may appear instead to the other person that the partner has either given up or does not care. When these sentiments begin to build up inside of a relationship, especially one that has endured much already, is a sign that you are reaching a dangerous zone. A frustration like a patient refusal to adhere to doctor’s orders, or to loved ones wishes for their own well being as the case above, can spark a fire and unleash a fury causing at times a twenty year marriage to implode on itself. Then we are left alone to pick up the pieces  and deal with our illness at the same time through lenses of disillusion.

The epiphany– sometimes a feeling of neglect and betrayal we feel from our spouse is more about us than them. We have to start peeling the layers back one by one before we are confronted with our own insecurities and fears. This will lead to self discovery and understand what we are really upset about. Since, as Maya Angelou wrote “tragedy (chronic illness), no matter how sad, becomes boring to those not caught in its addictive caress.”  Thus, at some point in our lives we have to confront adversity all by ourselves. when you do, remember that Healing is a life long process which starts by being kind to yourself.  You must love yourself before you can love others fully. I pray that you discover this before you lose something more valuable. In our struggle to survive living with a disease or trauma which has greatly impacted our lives is to focus on the “cure” (be healed). Sometimes, sadly as it may occur with cancer patients or trauma victims, physical healing can take place only to expose our deepest darkest fears leaving us emotionally and spiritually devoid.

I have discovered that ironically the best way to heal completely and be free to live life to the fullest is to let go of the idea of finding a quick fix. The answers is not on the outside rather within us and it takes time. Many people go through therapies and treatments like yoga, bicycling, mindfulness, pharmaceuticals, acupuncture, etc. as if by partaking in these we will eventually reach a point where we can say I am finally – completely healthy and cured (from whatever ails us)!

Not so. This is not the end of the world or us for that matter. Not only is it okay to not be perfectly healed since it reflects life as it truly is- imperfect. We are a work in progress.

Instead on focusing on the bad- focus on the good and learn to compromise. Learn to let go of resentments and things that don’t nourish the soul, give you joy, or strength.

Remember, when dealing with an illness like in any relationship 3 rules apply:

#1 Neither one is going to be entirely comfortable all the time–  we are all unique individuals, thank goodness if everyone was like me it would be very chaotic. The pendulum is always swinging back and forth in any good relationship- is a give and take – if one person is always in control then there are bigger issues with poor boundaries that need to be addressed.

#2 Decide upon a philosophy to tackle the illness – this does not mean you are not free to make decision as the situation arises on the spare of the moment -simply means you have an agreed upon common goal-

#3 There can only be one driver at a time– I am sure you are all familiar with the saying “too many cooks spoils the broth.” But, in order to enjoy the drive whatever the scenic route may be, there must be trust that the person in charge of steering will get you to the right destination safe.

Now, you can start living life with the fullest not dwelling on the past, focusing on the future but living the here and now. embrace life do things because they nourish you, they make you a better person not because you are trying desperately to be healed. always be grateful for what you have and the people around you who are willing to stay by your side and support you and share your journey victories and defeats.

Have a blessed week everyone!Image result for Dancing Quotes About Life

Sources:

Spiegel Amy, “Letting go of Perfect: women expectations and authenticity.” Foreword Smith, Angie. B&H Publishing Group, Nashville,TN  2012

Harvey, Cig  (Aug. 2017): “Let it Go.” The Oprah Magazine, Vol 18 (8): 92-103

Copyright@2017

All Rights Reserved Maria De Leon

 

Just like Mike: By Maria De Leon

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“I want to be like you, talk like you, walk like you…” Disney’s The Jungle Book

As we enter the Memorial weekend I was thinking of all whom have sacrificed for us to continue to have the freedom and liberties we all enjoy in this country…I salute all our military men and women as well as their families for their selfless contributions.

But then there are other types of heroes who have done so much to protect our dignity while living with a chronic illness like Parkinson’s disease that they too deserve our gratitude and admiration.

One of these lovable characters who has stolen our hearts from a young age, is none other than your friend and mine Michael J Fox. He has become the embodiment of PD especially for those of us with young onset.

Seems like ever since I was in medical school training to be a neurologists he has been a constant in my life. I recall when we first heard of his diagnosis and speculated about the cause since he was so young and till then this illness was not associated with young people – at least not as an idiopathic disease.

Then when I was a fellow we at BCM did various gala’s to raise funds for PD.  Mike was the guest of honor  for one of these events. he had already published his first book and everyone including me was so looking forward to meeting him. and getting my book autographed.  But, alas this was not meant to be. he had severe dyskinesia’s by then and was having a difficult time, my heart went out to him. however, one of his managers promised me to get my book autographed but I never got back. (a bit disappointing). yet, Michael appeared live via satellite and did in fact speak to us and despite his severe uncontrolled movements he was as charming and personable as always. Little did I know then that we would share so much more in common both off us developing the illness about the same age.  Twenty years later I would finally get the chance to meet him in person and thank him for his contribution and his eternal optimism. nor did I realize I would get a chance to be part of his foundation as an ambassador for public policy issues.

Recently, he was featured in the cover of AARP magazine , an honor he greatly deserves. As I read this, I realize we share the same philosophy of life in dealing with this devastating illness. I, too, agree that top and foremost importance is to have “optimism” which I call faith- knowing things will look up and work out for the better if you just hold on long enough. This has served him well as he continues to thrive despite nearly 3 decades of PD. I, too, feel this is one of the many reasons along with ability to laugh at my self and my circumstances that I continue to enjoy my life despite living with PD. He also finds a good dose of humor to be just as important as any medication prescribed by a physician.

Finally, besides family, love and giving others what you need in your life is keeping busy mentally and physically that make a world of difference in maintaining a positive outlook on life whether you have an illness or not.

Thus, I urge anyone living with PD or any other chronic illness to be more like Mike and enjoy life to the fullest.

Happy Memorial Weekend everyone!

Copyright-2017

All rights reserved- Maria De Leon MD

 

Image result for image of memorial day

A Parkinson’s Diva Mother’s Day: Maria De Leon

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Image result for mother's day quotes

This statement I think can sum all of us mother’s up especially those of us who are burdened with life’s challenges and illnesses. of course being a “diva” I have to do everything BIG. This means two mother’s day celebrations – well you think it would be awesome but this diva managed to screw up not just one but almost ruin the second one.

First, of all if you happen to be of Mexican decent you celebrate the 10th of May as Mother’s Day no matter what! But, this year my sister informed me that she was just going to focus on one day from now on and that would be the second Sunday as it is tradition here in the States. Given the fact that I had been calling mom, reciting poetry, and giving her gifts to celebrate what we know call “Mexican’s Mother’s Day” I felt a bit uneasy but acquiesced for mom’s sake. This way, I thought, avoid some children calling and not others making mom feel bad.  After all this year we had a much bigger celebration in store; since my nephew -first grandchild was graduating college the day before mother’s day and were planning a family gathering to celebrate both.

So morning of Wednesday came – Mexican Mother’s Day and I feel lousy. I had been having cold sweats and chills the night before. Thank goodness I had a follow- up   appointment at the doctor already scheduled. Of course, I wake up discombobulated drenched in sweat and  realize I have but a few minutes to get ready before I head out the door. as I am stumbling in the closet trying to get ready mom come singing all jolly and happy a mother’s day song to me… I look at her and trying not to make a big to do as I had promised my sister, I uttered some words and kept bouncing off the walls trying to finish dressing.  I got some steroid shots and antibiotics after spending all morning at doctor’s office because mycoplasma infection is going around and I was pretty sick. I was beginning to get ill tempered which only worsened with shot of steroids I received then was aggravated by the fact that all of my family including my sister had decided to make a big to do about this particular Mexican Mother’s Day. Naturally, I felt like a heel for being the only one I might add who happened to have mom in her house and not do a thing…so I managed to salvage the day by taking her out to dinner and having a girls night out- Diva style!

Next graduation came – we started celebrating the day before with a visit to the hair salon followed by a night which included awesome food, much laughter, modeling new clothes and roasting the graduate and much teasing for throwing me under the bus. But all was forgiven with my sisters’ delicious red velvet and cream cheese cupcakes which were to die for… even my husband who rarely eats sweets devoured a cupcake in a single bite and liked his lips and fingers and asked for more.

When today came round two of celebrations took place ‘Diva’ style…I have to do everything GRAND! but the biggest gift and source of joy come from still having a mom who is healthy and strong and looks more like my sister than my mom and of course the whole reason I am called mom  is a precious teenage girl who has all of my unconditional love and who told me today that although, she seems not to hear everything I say.. thanks PD! she is always saying I did not speak like I think I did or say something I know I said and even asking me to repeat things over…

YET, ALL the I lOVE YOU’s come in loud and clear! and she is glad to have me as her mom crankiness, PD,  and all…

What else can any mother ask? Nothing but to know that her children are secure in their mom’s love!

Although a bit late, I say Happy Mother’s Day to all the Parkinson’s diva out there who make PD look easy compared to motherhood!

many blessings..Image result for mother's day quotes

 

copyright-2017

all rights reserved – Maria De Leon MD

Perils of Fast & Furious – Life with PD: by Maria De Leon

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In life some people trip and some fall but some take that trip and make a beautiful dance out of it.Sometimes, I feel like everything is just going too fast with my daughter nearly finishing high school and my only nephew applying for master’s program while my oldest niece heads off to college. I remember holding all these babies in my hands thinking I could hold them forever in my arms. Now, although I am happy and proud, I just want time to stop and enjoy all of it. Why can’t time have Parkinson’s? Wish it would crawl like molasses as my body often seems to do when I want so much to move faster. Wish time would have a bit of memory loss, as  I often do after taking my amantadine, when it comes to the bad days and freezes during the moments of  sheer joy like when I listen to my daughter play the piano and marvel at her talent as she plays one of my favorite melodies-Nocturne. But, alas as much as I would like time to develop PD it would have none of it. However, it has become my friend showing me the beauty around even as my disease progresses and seasons change – there is always something new to behold,  and learn from.

So has been my life this last month,  I thought that once my practiced closed I would feel a void in my life. But, rather I have discovered new activities, skills, talents, and friends I never imagined that I would have all thanks to living with PD.

In my role as ambassador of PF and activist for all people with Parkinson’s, I got the opportunity to have several interviews nationally to raise awareness in the Hispanic community as we celebrate 200 year anniversary of the “Shaking palsy” publication.

No more fast paced times have I had than during these days of interviewing sitting by my phone starting way too early for me and my meds to kick in- fortunately I did not have to go further than my bedroom. one talk after another and another- feeling my words begin to slur as my mouth became thick and dry and hypophonic (low voice) as the effect of  the medication wore off quicker than usual due to the high mental activity. The days went by in a blur compounded by other responsibilities and activities, I as a mother have. Two of my favorite stories which will live in my memory bank forever that occurred during this crazy period are as follow.. which will forever cause a big smile.

My daughter was to sing in the choir at church, I was spent from all the awareness activities and radio show talks that I could barely move and my neck was in a state of complete spasm from talking on the phone for hours. The cervical dystonia invariably triggers a wave of migraines which usually I can abort but not this week when I needed most because the insurance had refused to cover my Maxalt which I have taken for years and the medicine I was given to replace only caused my head to hurt more. There I was with severe migraine throwing up and stiff as a board trying to get dress in a hurry. No can do my body protested. But, I must get ready and attend my daughter’s performance I insisted despite by husbands better judgment, of course I should have listened because by the time we arrived we only saw her leaving the stage.

The second scenario-came about in the middle of the week in the midst of a hectic schedule which include teaching. A friend associated with a group of women I teach left me a voice mail saying there would be a get together and would love for me to attend the following day at noon. No more details or at least I did not hear. The following day  after completing all my morning activities, I realized it was almost noon. I did not want to let my friend down since she insisted I come. But, having been on the computer and phone since 6:30 in the am I was in no way ready to socialize. The dilemma was go all grungy an hope to get there on time or make effort to look presentable knowing full well I would be late. Realizing lunch was being held at a place usually considered a bit more upscale I opted for the latter – thinking this was an informal get together. I arrived late of course and entered a room full of  well- dressed women seated at tables with fine china and cutlery. I nearly retreated but the host caught a glimpse of me and said: ” I am so glad you made it. let me show you to your seat which had my name inscribed on a card.” this was an etiquette luncheon! First faux pas – do not show up late! but, thank God at least I was presentable! after a very enjoyable lunch and fellowship which extended way longer than I hoped for (and could not leave early since I was already late too begin with) I had to sit getting stiffer and more antsy since I had another meeting to attend and the time for this to start was beginning to draw near.   I am still not sure as far as etiquette if would have been better to not look good but be on time or arrive late looking fabulous!  This week back to my slow crawl pace – till next adventure. In the meantime will try to catch up on some reading curled in my favorite diva couch!

Happy Week to everyone!

Art By Ross Webb

copyright-2017

All rights reserved – Maria De Leon  MD