Striving for a Healthy Radiant Skin with PD in the Midst of summer. By Maria De Leon

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And so with the sunshine and the great burst of leaves growing on the trees, just as things grow in fast movies, I had the familiar conviction that life was beginning over again with the summer.” ~ F. Scott Fitzgerald (The Great Gatsby)

With summer a mere month away, I like to remind myself and others to protect our skin from the harmful sun rays which can lead to skin cancers.  Although for me, summer time is a season of renewal along with the promise of new adventures and endless possibilities; it is also a reminder of what unprotected skin can become. I lost my father to Merkel’s carcinoma from years of fishing at the lake without any sunblock. My grandmother and I have had several bouts of melanoma – so no matter what else you do in life always wear sunscreen.

Wearing sunscreen is not just good advice but it is a crucial tool in the scope of Parkinson’s treatments just like exercising in helping us maintain and maximize quality of life. Those of us who have Parkinson’s disease already feel the effects of the disease on our skin daily from the eczema/ atopic dermatitis (scaly, flaky, itchy patches of dry skin more commonly behind the ears, in scalp, around the nose and forehead) plaguing our faces, to the excessive sweating driving us insane, to the increased risk of melanoma (2 to 7x higher than normal population) which causes us to visit the dermatologists more frequently than we wished.. However, these pesky problems should not keep us from enjoying our summer while protecting our skin which is our first barrier of defense against disease. Therefore we must learn to care for our skin by being proactive particularly during extreme heat or cold.

If you happen to be of darker complexion like me don’t assume that you are protected and out of the water from getting melanoma especially if you are young woman with PD. In fact, according to the Journal of the American academy of Dermatology highest risk of melanoma occurs in ages 15-29 while nearly half of black and a third of Hispanic women are diagnosed with melanoma in later stages compare to less than a third of white women. Furthermore, women of color like me have presentation in soles, palms, and nail beds and other areas not directly exposed to the sun. So along with sunscreen protection you must also get routine exams (self and by a professional). Case in point, is that 2 of my melanomas were detected on self- exam while I was trying on bathing suits for the summer! These were in areas not usually exposed to the sunlight.

Despite possible worsening of eczema and hyperhidrosis (excessive sweating) with heat, pollen’s, and stress, I still look forward with anticipation to this time of year. Not only because my birthday happens to be in the summer, but also because I crave the freedom of sitting on a beach somewhere contemplating the waves, enjoying the ocean breeze while I cherish the feeling of sand between my toes.

Go ahead show your skin off this summer remembering to let go of all the stress and anxiety if even for a few moments – while you soak up some much needed vitamin D while you enjoy the ocean, a walk through a trail nestled in the trees, or have tea in your back yard.

If you go to the beach wear sunglasses and don’t forget to apply sunscreen even between your toes. Show of those toes in colorful hues but I would refrain from using shellac – it uses UV light to bake in – is like getting a tan for your nails.

Use light clothing that is breathable – fortunately many retail stores are carrying a line of protective UV light clothing. You can find some of this at Talbot’s (one of my favorite places to shop).

If you are one of those persons who have severe autonomic dysfunction due to PD or simply sweat due to Parkinson’s medication (e.g. amantadine) aside from using cooling gels or jackets there is a new medication which might allow you to enjoy your summer without feeling like you will simply melt away. We want to glow not glisten. Talk to your doctor about Qbrexa.

Go ahead and flaunt that new hat- you know you want to- this will protect your face from getting burned but also keep eczema at bay- if this is still a problem there a few treatments your dermatologist can recommend things like Elidel, Eucrisa (I prefer because not steroid based), ketoconazole shampoo and triamcinolone.

Above all have fun and hydrate, hydrate, hydrate with water and applying creams that are saturated with vitamins and oils after a long day in the sun.

Happy summer!

Source:

Douglas Deborah. (S.O.S) the Oprah magazine June 2018 9(6):109-113

@copyright2019

All rights reserved by Maria De Leon MD

Parenting Tips for PD Mom’s- who have chronically ill children. By Maria De Leon

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“Blessed are those who mourn for they shall be comforted.” Matthew 5:2

As we begin this week’s celebrations on behalf of the most important person in the world to every child their mom, I want to dedicate this blog not only to all the wonderful moms around the world especially to those who despite having PD also have to raise children with chronic illnesses.

 The truth is that motherhood as wonderfully amazing as it is it never ends even when our kids are grown with their own kids.

Now that I am a mother, there so many things I understand which I did not fully comprehend as a young person. I am sure all of you know exactly what I am talking about. One of which is the pain that a mother feels when one of her own gets hurt or becomes ill. There is nothing we as moms would not do to make it all better. We would trade places in an instance with our children despite their age if it meant spearing them from pain and shielding them from any hardship. Now I fully understand my mother’s look of pain when I was diagnosed with PD.

For us who have a neurological disease like Parkinson’s is heart wrenching to see our biggest worry materialize in the form of our illness suddenly sprouting in the lives of our own children.

Besides crying and praying for mercy and sparing of our loved ones, a mother’s heart has to be stronger than ever to help bear and shoulder the burden.

When it comes to our own children, their happiness and health overrides any possible discomfort or pain we might feel as mom’s…even our own physical ailments suddenly become trivial taking a backseat to the problems of our own children. We have to somehow mustard all the energy we have to aid them in their new journeys …from denial to acceptance. We must also learn to lead by example so they too can have full meaningful lives’ despite their shortcoming.  Suddenly things like grades and attending the best schools in the country fade in comparison to the wishes we as mothers have of having and raising healthy, well -adjusted individuals capable of pursuing their own dreams. Sometimes their illnesses may be so severe that they will never have a “normal” life but they can still thrive in their own environment surrounded by your love.

Despite the feeling that sometimes we are ill equipped to handle our own illnesses much less that of our kid’s illness, we may feel at a loss, alone or abandoned. But, I am here to tell you that you are not alone and that God makes no mistakes. I assure you that He knows exactly what you and I need and what you can give that child.  He gives each and every one of us just what we need to rise to the challenge.

Remember to not let your identity become defined by your child’s illness. Just like our disease does not identify who we are. This is especially important because sometimes we can get so caught up on being a mom of a child with neurological disease  (or any other chronic illness) that we resist when they want to have their own life and spread their wings …I often think of that wonderful movie- ”The Other Sister” directed by Gary Marshall and starring Juliette Lewis. It is a movie of the mothers love and struggles and guilt for wanting to protect her child from life’s adversities because she has a disability. But is also about learning to let go and trust in the bond of love between mother and daughter (child).

Letting go can be more terrifying especially if other relationships have been sacrificed. You must set an example and continue to strive for a full life for yourself and for your kids. Encouraging them and allowing yourself to experience a full array of relationships.

Be present in their lives without hovering over them. Remember to allow yourself the roller coaster of emotions by being honest. Don’t sugar coat or trivialize your plight. It most definitely sucks to be ill and especially to be ill with a child who has a chronic disease!!!!



“Being a mother is learning about strengths you didn’t know you had.” —Linda Wooten

Just like in living with our disease and parenting – we still have to maintain schedules and discipline- at the beginning is all chaos but soon you will get into a groove and set your own schedule that works for you and your family even during exacerbations and or hospitalizations. Simply because we get sick or our kids get sick does not give us a free pass to throw all rules and discipline out the window – younger children/ toddlers/ infants need much more constancy, consistency,  and discipline

Another thing to remember is to keep your stress under control because it not only will exacerbate your symptoms but may create tension in the house hold and cause fear, and stress in those you are trying to care for causing the child to become withdrawn, isolated or introverted …don’t focus on the disease. Let them adjust on their own they will surprise you. Give them space and room to grow- always maintaining open lines of communication and be honest

It’s a fine line between being concerned, making sure they get appropriate treatments, and making sure they understand severity or implications of disease while letting them grow up with normal dreams hopes aspirations and desires. I am still learning one step forward 3 steps back.

In the end you will develop an even stronger bond and create more compassionate empathetic human beings.

@copyright 2019

All rights reserved by Maria De Leon MD

Soaring with Hope (Kyūjōshō suru with Kubo) By Maria De Leon

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“It is better to travel full of hope than crying…” Japanese Proverb

All over the world many Christians and Jews celebrated Easter and Passover. For both the main message is not only gratitude but HOPE for a better tomorrow. Based on Biblical principle there is a clear chain reaction which occurs when there is suffering whether mental, physical or spiritual. This type of suffering can be brought on by a multitude of things including a medical illness such as Parkinson’s disease. With time most of us we learn to persevere in the midst of adversity. I often think of those of us who live with a chronic illness as being called to greatness for the beautification of others rather than ourselves.

Have you ever seen a blooming flower arising through the asphalt, or on volcanic rock or even in the midst of a desolate, thorny, weed -infested soil? I am sure you, like me, were amazed to witness just phenomena and wondered how on earth was is it thriving in its present circumstances? When all logic dictates otherwise. Yet, these flowering plants don’t know of logic. All they know is that they need to survive somehow, just like those of us with PD and other chronic illnesses. No amount of adversity was going to hold these plants back; so they endured and persevered until one day they found what worked best for them which gave them their unique characteristics. We are the same as these flowers, if were are to thrive we must persevere day after day. We must not give up rather endure until we find that one thing which makes us unique to be able to rise from the hot lava we find ourselves in and become what we were meant to be. That my friends is character building (character is who we are deep inside even when no one is watching us)  Despite the medical logic which dictates that we should wither away or simply exist we (Parkinson’s community) more often than not seem to spout out new wings, new passions, new dreams and become even more resilient than ever before. My family often reminds me of this. but this is true not only in me but in so many of you.

All you have to do is look around what was accomplished throughout the world during month of April to raise PD awareness and you too would be astonished at the impact these beautiful fragile flowers (PD Individuals) have had on all of us by simply being whom they are full of inner fortitude drawing others to admired their stamina and great feats thus producing the last step in the chain HOPE and Hope my dear friends never disappoints as long as it remains in our hearts!

This is why I am so very happy that Hope was chosen as the theme for the 2019 WPC in Kyoto this year.

As long as there is hope we have the POWER to pick ourselves up, STAND TALL and continue on.

@copyright 2019

All rights reserved By Maria De Leon MD

Being a Mom Free to Parent despite Parkinson’s: by Maria De Leon

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 “We do not know what to do, but our eyes are on you…” 2 Chronicles 20:12

When was the last time you heard another mom say: ‘This mom thing is a breeze, I feel no pressure what so ever?

Never!  Right?  Whether you are a seasoned mom or a new mom, there are always challenges to be met. Just when you think you got it all figured out some new unexpected situation pops out of nowhere and puts your patience, and skills to the test. Moms are under so much pressure to be a “good mom” and be “enough” for our kids that it can feel like a full time job. Now throw in parenting while juggling living with a chronic illness like Parkinson’s.

If you are like me most days you stumble out of bed reaching for your medicines through squinted burning eyes, (cause you just went to sleep less than 2 hours ago), feeling incredibly frustrated because not only are you stiff, slightly confused, off balance, and shaky; but now you have a mess all over the floor from trying to open the medicine bottles in a hurry!

Anyone else have days like this they would like to share? Or you may feel like a fiery breathing dragon when our kids are rushing us and demanding our full attention to help them get their day started when all you want to do is go back to sleep or be left alone. Of course our initial reaction might be a bit harsh –often being labeled as ‘irritable’ or ‘yell-y’ by our kids. We might feel the answer lies in a good exorcism from this PD demon that has taken over our lives without our consent. I have heard from other young women with PD say that they feel like a fiery lady or monster because they can’t stop being cranky, irritable, with a short fire fuse.

So, the pressure builds making us feel like we are not up to the task or that we might just implode at any given moment. After all there are meals to cook, diapers to change, college applications to complete, recitals to attend, appointments to keep, emails to check, schedules to coordinate, hugs to give and that’s just the easy stuff. Don’t get me started on the real tough stuff we got to live with making our brain’s and bodies do what we want them to do when we want to do it.

If this is you my dear friend, take a deep breath and realize that you are not alone. You my friend are more than enough just the way you are! We do not have to be perfect or have all the answers, we simply have to be present in the lives of your children and accept God’s grace for our lives. Our Goal is not to be perfect and have everything under control rather show our children that despite our weaknesses, flaws and ever changing illness. We are more than enough for our kids even on those days we feel the least lovely or lovable because ONLY God is big enough to bear the burdens inflicted by our illnesses that weigh upon us. After all the disease is not their fault and if you feel free to live your life to the fullest despite its limitations your kids will take a cue from you and learn to handle challenges head-on with a positive outlook.

So today, I want you to hug your children tell them you love them & breath in Grace.

@copyright2019

All rights reserved By Maria De Leon MD

Fashion is a universal language :word search: By Maria De Leon

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“Fashion is art and you are the canvas!”

Enjoy a leisurely Sunday afternoon sipping your favorite beverage curled up on your favorite couch. Relax let your mind go free & Remember that you are fabulous!! Life isn’t perfect but your outfit can be because it’s a reflection of who you are inside.

BOLENNAHCOCOC
INFLACISMIHWV
PCQKLMUAMUCOY
JEOSCMPDJLNCX
VRNSIZRRENFAK
SFFCTZAELWOTC
LUIASIDYBORWS
MDRPSAHARGAE
EEVIOMEECELHS
NELUPBCBTKSP
TSDLZPAVAJAMU
IEZIULOBELUZZ
RKIRPGLGEPRS
DCNEUELYTSTR
HUREDMEPCOAA
JRUNWAYWOMPR
ITJYSCGBOACE
NSBEYNNYKGLR
GNVCNJITAAARS
LOENALLHRZSEG
OLAFABGTISHA
MVIFNXIKNYABZ
EDIRCRXEJNNFQ
TATEYBKSXIHWE
RDTTNAGELEYMZ
ZEMOMRTOMXPPZ
UCOATSRAECREIF
XTWUAZSAGCNWOG
WCMICHAELKORS
FEAAGAICNELAB

WORD LIST:

ART

AUDREY HEPURN BAGS

BALENCIAGA BLING

BOOTS BRIGHT

CAROLINA HERRERA

CATWALK CLASSY COATS

COCO CHANNEL CONFIDENT CROWN ELEGANT ETERNAL EYELASHES

FIERCE GOWN IRREPLACEABLE MAGAZINES MICHAEL KORS

MOONSTRUCK PERFUME PRADA PUMPS RADIANCE

RED LIPSTICK RUNWAY SCARVES SEXY SOUL STYLE TIFFANYs

VELVET VOGUE WHIMSICAL

Stay tuned for more fun puzzles and activities in my upcoming publication of Parkinson’s DIVA:Hello Possibilities – a Journal for everyday life with PD.

@copyright 2019

all rights reserved By Maria De Leon MD

Being S.M.A.R.T with your Goals: By Maria De Leon

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“It’s a new dawn, it’s a new day, is a new life for me”, are the words that I want everyone to shout out with me this today! Although, half of the first month of the new year has already swooshed by, there is still time to think about our goals for the year and how we will manage while trying to battle an all encompassing disease. A decade ago, I was feeling unhappy and trapped although seemingly I had it all. Unfortunately, it took a devastating illness to make me realize what was important in my life. Even though the road has been bumpy and full of perils at times it has also been extremely rewarding giving me a new lease on life. This year as I begin not just a new year but also a new decade in my life I hope to continue reaching new goals and soaring to new heights along with all of you.

But in order for us to continue climbing and growing as people and showing our illnesses that we will not be hostage or defeated by Parkinson’s, or any other chronic illness we must start by being S.M.A.R.T. in other words in order to keep moving forward we must set goals that are:

Specific: Make time for what really matters to YOU, your family, & God! Rest, eat well and take medicines on time.

Moderate: Don’t over extend yourself. Remember that we unlike others have even less energy and less mental stamina at times so we should choose our projects carefully. Start small on a goal or project and build your success by mastering that one thing at a time. We can’t just get up one day and expect to write a novel if never written before (believe me I tried- it took a lot of work). There is a learning curve to everything worth doing even for us to overcome our physical and mental impediments.

Achievable: Focus on reaching plausible goals- stop falling, stop choking, exercise once a week etc. Always act and think in terms of what you CAN do and achieve rather than on what you CANNOT do. Example, this week I will try not to miss my noon dosages. Instead, I will set an alarm to remind me to take my medications as scheduled.

Recordable:  Remember that you cannot manage what you can’t objectively record. Go ahead keep a diary of your progress (or lack of). this will make you accountable. This will help you and your doctor know what you must work on together.

Time-Specific: Review your goals monthly, weekly if struggling. This way you can trouble shoot and change direction with greater ease if having trouble. This requires introspection and being honest with oneself. Healing begins from inside out after all.

If you are S.M.A.R.T in all areas of your life not just those related to your illness you can achieve anything and really be able to shout …”I am feeling good today!” Just as I have learned. So stop procrastinating, feeling sorry for yourself and take back control of your life and start living to the fullest. It won’t be easy but it will be very rewarding I promise.

Sources:

Lyrics by Michael Buble _ “I am feeling good”; ‘The word for you today” by Bob Gass

@copyright2019

All Rights reserved by Maria De Leon MD