Tag Archives: parkinson’s disease

Rhapsody of a Diva: By Maria De Leon

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

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

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

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

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

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

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

@copyright2018
All rights reserved by Maria de Leon

4 Easy Ways to de- stress and Improve your Well-being while living with a chronic illness like PD: by Maria De Leon

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For those of us who live with a chronic illness like PD by now I am sure you have discovered as I have that stress whether physical, emotional, or physiological can have a detrimental effect on our mood and on our symptoms. It is for this reason that many people with PD feel as if they have fluctuating symptoms on a daily basis despite the fact that Parkinson’s is a slowly progressive neurodegenerative disease.
Learning to deal with stress and finding ways to prevent it in a healthy fun way can lead us to a happier more balanced life. Subsequently, by managing our stress we may be able to experience less ups and downs with our already complicated illness.

The first thing we can do to improve our tension levels is listening to music – but not just any music. A specific type of music like baroque which is characterized for the most part by 60 beat per minute tempo also known as ‘larghetto’ not too fast and not too slow – in fact just right.
This coincides with the rhythm of our hearts at a calm state because in fact some scientists believe that a heart rate of 75 and greater, which was considered within normal range in the past, carries a higher risk of having a heart attack.
Not only will this tempo relax us by calming and synchronizing our breathing with our heart rhythm but will also improve blood flow to our brains. Subsequently, this may be one of the reasons listening to this type of music increases our concentration. As we all know, poor concentration is a big issue in those of us with Parkinson’s – part of it could be that we are so run down we don’t even process the information around us. But being totally stressed can also play a major role. Multiple studies have shown that music with 60 beat per minute causes an immediate sense of well-being and even boosts our IQ levels. This was seen on subjects tested while listening to baroque music. Moreover, when we feel relaxed, we are more prone to have a positive outlook. A positive outlook on life is everything, I always say. When we have a bright outlook makes more likely to consider all the alternatives giving us more sound judgement avoiding rush decisions. I know personally when I am tired or in pain, I don’t want to be bothered with details or complex decisions. Sometimes when I find myself in these situation, I tend to rush to an answer without considering consequences fully leading to more problems down the road. I have learned not to make any important decisions including filling out paper work which is vital. However, if baroque music is not your cup of tea then find music that appeals to you but with similar tempo.music notes

Secondly, laughter is a great stress reliever. We have all heard that laughter is the best medicine. Not only does laughter strengthen our immune system but is a great coping mechanism to relieve pressure. I often say that I laugh because it beats the alternative. Because laughter plays such a crucial role in healing, many scientists have looked at laughter to assess its benefits and effects on tension. Interestingly, laughter decreases stress differently in men and women confirming once again that gender is a crucial topic we must take into account when prescribing treatments for various illnesses. In men laughing actually decreases the stress directly by dissipating the distress. However, this does not occur in women, rather by laughing we women gain insight into a situation which then helps us cope better with the stressful factors. Despite differing mechanisms, the end result is the same – we both feel better with a good laugh. Go ahead find some friends and laugh or simply learn to laugh at your own mishaps as I have. You will feel better, I guarantee.

Thirdly, painting– I have never been much of an artist. However, even though I still am far from considering myself as any good at painting I have discovered that you don’t have to be good at something to derive pleasure from it. You don’t even have to paint your own art work rather simply fill in the colors of someone else drawing to feel the benefits. I think that this is why coloring has become so popular. We remember the pleasure coloring as children, well as an adult I have regained that same sense of accomplishment when coloring a drawing turning into my own masterpiece. Art therapy in all is forms is something I have fully embraced over the last decade as a useful alternative therapy to dealing with neurological diseases for many reasons. One of which is a sense of empowerment one achieves through the use of colors, and creativity. Moreover, painting and other art therapy can not only provide a momentary distraction; but it also relaxes the mind when you set everything else aside and focus on the task at hand. Besides being fun, it is a great coping mechanism through which emotions can be effectively worked out releasing anger, anguish, and frustration with a few strokes.kandinsky21

Fourthly, enjoy nature / green – when I was a young girl living in Mexico, my grandmother always used to say to my grandfather that she needed to go out to the woods to look at the trees and the greenery around. She would get so excited every time she saw how green everything was. Well, it turns out my grandmother was wiser than most. Subconsciously, she knew that seeing green or being surrounded by nature provides an excellent calming effect on the brain and body. Since green is a color reminiscent of nature, spring, growth, peace, and financial prosperity is believed to diffuse anxiety and have a calming effect by producing a harmonious sense of well-being. Being surrounded by green forests, trees also improves concentration and clarity increasing creativity by actually improving our brain waves. Improves reading ability …perhaps that’s why I and many feel so alive in spring when everything is blooming. I guess, I inherited my grandmother’s intuition because my writing room is green (pale yellow greens and beige greens are the most soothing). In 2010, a study in Environmental Health and Preventive Medicine found that a stroll in the woods versus the same time spent strolling in the city had a greater impact of decreasing stress hormones like cortisol and lowering blood pressure. This simple fact, maybe why I like Central Park strolls or near parks in the city and in the woods like my grandmother. nestledown

Go ahead start decluttering your life and getting rid of unwanted tensions and preventing worsening of symptoms due to stress by using one of these simple methods of relieving tension in your life. I have celebrated a huge milestone in my life this last week for which I am forever grateful to my God. As such, what better way to be reminded of His grace in my life than to feel His presence admiring the beauty of creation surrounded by thousands of giant sequoia trees.
These threes have not only stood the test of time but weathered many storms losing a branch here or there but never lose its hope it will stand for another 100 years.

Sources:

Stress relief from laughter- it’s no joke. Mayo clinic
psychological effects of forest walking in healthy adults

@copyright 2018
All rights reserved by Maria De Leon

Dealing with the 7 Invisible signs of living with chronic illnesses: By Maria De Leon

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“Love the people who see you when you are invisible to everyone else.”

We all know that having a chronic illness like Parkinson’s disease makes dealing with all other aspects of our lives much more complicated. Handling our personal, social, emotional and financial situations can turn into a bigger challenge, if we don’t learn to recognize and deal appropriately with the symptoms others can’t see like pain, anxiety, irritability, and depression. In turn these issues can lead to more serious problems of isolation, strained relationships and agoraphobia.

Learning to live and cope with all the ups and downs of a chronic illness takes skill and a great deal of support from our friends and loved ones. However, sometimes is the invisible symptoms which cause us a great deal of pain and hardship especially if we are not in tuned to these problems as a family or person living with PD.

I don’t know about you; but sometimes besides not feeling well physically I just wake up angry or sad for no apparent reason. When this happens not only is it tough to deal with being off mentally, but also having to act and carry on activities of daily living like nothing is wrong. So what happens? Either we take it out on our loved ones by becoming extremely irritable making it hard for others to get near us or being on edge and exploding at the slightest provocation. In this scenario everyone hurts and suffers. Best way I have found is to isolate myself for that time as to avoid hurting anyone’s feelings. Sometimes a good cry for us women is all it takes. But, in my experience, this is a sign that something is amiss with our bodies and brain function such as our levels of dopamine have faltered or we have an underlying problem such as a cold, urine infection or dehydration. Meditating, listening to happy tunes if sad and faking a smile till you feel it always works for me. Sleeping is also another wonderful remedy for when things are not going well or seem out of sorts. Once you wake up from a good nap, things always look brighter. Otherwise feeling irritable can create much friction especially if you have children or other people who depend on you for care. Hug your children, spouse and loved ones this also eases the irritability.

Other times irritability comes from being in pain. Sometimes we can barely stand being inside our own skin much less deal with any outside factors or demands. Don’t be afraid to talk to your doctor to provide adequate pain medication so it does not turn chronic. Many times increasing the levodopa is all that is needed to handle the pain. However, if pain is due from dyskinesia’s causing strain on your neck or back then the opposite is required with possible DBS and other treatments to manage symptoms.

If we are to avoid having strained relationships with those who matter most, we must learn to communicate our feelings without projecting on others our frustrations and disappointments. Since pain tends to color our perspective and alter the way we view things – we have to tell our loved ones “I am in pain right now and having trouble dealing could I have some time to myself or can we not make any major decisions at this moment.” Tell them you appreciate their concern but need alone time or time to heal without blaming them for what is going on your bodies. Unfortunately, many divorces and break ups have occurred because not only do we take out our frustrations on those closest to us when we hurt but we feel that they are not doing enough to help us. However, must remind everyone that it is about us not them. If you are honest and open they will understand and give you the space you need. If you do this and they still leave because you are not dedicating 100 percent of your life to them, then they do not belong in your life. Let it go and move on. Embrace the people who love you and stand by your side unconditionally.

The other thing that happens is that as we begin to have physical problems with PD like freezing resulting in falls and injuries, experience loss of conscious due to orthostatic hypotension, someone looks at you funny while on the floor rather than helping, or says something because you are too slow,or shaky making you feel no bigger than the size of an ant. instead of hiding from the world the rest of your life to avoid feeling this way again, let us find ways to improve the symptoms cause so much social anxiety which could lead to agoraphobia if not treated properly. This sometimes can be a subconscious reaction to having several bad or traumatizing experiences in public in which you felt publicly humiliated. So the mere thought of venturing out and having another episode occur in which you feel helpless induces anxiety and downright panic. I have had a mild experience with this early on when I was dealing with issues of orthostatic hypotension and disequilibrium. I fell down one too many times and was stuck unable to get myself off the floor when alone that for a while I would not phantom the possibility of going anywhere alone much less on a plane. this was devastating in so many levels. As with any fear, the key to conquering and overcoming is baby steps into that which causes the anxiety; sometimes medication is required and other times behavioral therapy might also be warranted. The main thing is not to let the fear and anxiety take over your life. Find a way to get back to doing the things you love independently or if needed a friend that will reassure you to continue being active.

Even though, most of us have experienced all or some of these at one point or another in our illness, the key is to recognize them, talk to your physicians about them asap and also with your loved ones to prevent them from robbing you of your happiness and peace of mind.

It’s time to remove our invisibility cloaks and be seen for the wonderful women and men that we are!

@copyright 2018
all rights reserved by Maria De Leon

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

Fashion & Chronic Illness: Maria De Leon

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Fashion is a form of art. It is an outward expression of my inner self.  Just because  I have Parkinson’s and have had cancer, on more than one occasion,  does not mean that I  have to abandon my sense of style and neither should you!

Image result for images of quotes on art and fashion“Fashion is the most powerful art there is, it’s movement design, and architecture all in one. It shows the world who we are and who we would like to be.” Blair Waldorf

Just like Coco channel, ” I don’t do fashion …I am {and make my own} fashion.” however, when you live with a chronic illness like PD where sometimes there is not enough energy to even get dressed or get out of bed being stylish and fashionable can seem a bit trivial.

But, I say is not because when we feel the lowest that’s when we have to mustard all the strength in the world to paint our canvases that will shout without saying a word…I am still me and no matter how bad it seems I will not be defeated!

Ralph Laurence said it best, Fashion is something that comes from within. are we in the game or are we out? Will be surrender to live in a constant state of hopelessness and oblivion with our stretchy pants and pj tops or are going to be women who will find a way to rise pink boxing gloves in hand?

This does not mean you have to spend a fortune or dress up in formal apparel, it simply means that no matter what you will paint your own destiny with the things that make you who you are.

If you can’t do your lashes get fake ones cost very little to put on  and they last 4-5 days and you will feel fabulous. If eyeliner is hard to do, consider permanent eye liner. Get thick mascara brushes for lashes which can be applied easily in one stroke or vibrating brushes (Lancôme) which will help with the dystonia and tremors if fake lashes are not your thing.

God knows that taking a gazillion medications wreak havoc with our skin, hair and nails. when these look bad we tend to feel more self conscious and perhaps it might even aggravate our depression. But, doing our nails especially our toes can be more than a challenge. First, we can’t always easily bend to apply nail polish to our toes due to the stiffness.  If by some miracle we are able to, the tremors and dystonia make the paint brush strokes look like those of a 3 year old. Then if we manage to paint our beautiful little toes, removing the darn nail polish  can take an act of congress. My hands cramp and twist just trying to remove polish off one toe which is a work out in and of itself. Now that summer is here, we certainly don’t want to go out to the beach with our toes bear and poorly manicured, I know I don’t. Especially, given the fact that the medications can make our toe nails brittle and discolored on top of bendy twisty toes. I choose to put my best foot forward and splurge for a good pedi -cure with a good massage to the achy feet and legs. of course, you may choose traditional colors or even a bit of whimsy like I have this summer …going for some watermelon toes or a rainbow of pastels.Image result for watermelon toenails

But, if you prefer to do it yourself. There are a few options. You may wish to buy fast drying gel polishes which look great even if you mess up some plus they last longer ..but make sure to buy gel polish remover so you won’t struggle so much. Also because we are more susceptible to other illnesses when we have a chronic disease avoid using artificial nails which trap bacteria and can lead to fungal infections. Look  for water based polishes which are non toxic and  non- flammable-especially great if you will do some traveling this summer.  you may also wish to purchase those strip nail which may be fun to play with. you simply have to cut/ trim to fit your nail.Image result for strip nailsImage result for strip nailsImage result for strip nails

If you want to splurge a bit and have your nails look great for a longer time, consider doing shellac – comes in a rainbow of colors, which I love. But, under no circumstances should you file your nail bed before applying gel polish for shellac because it will destroy your nails for months. I just had mine done for the summer. Having manicured hands and toes makes me feel special and “normal” not like a chronic illness person.  This year I went for patriotic look -(sorry, a bit blurry)

nailsHowever, I would not recommend doing this method more than once a year. This requires the  use of UV light and those of us with Parkinson’s disease are more prone to having melanomas which does not exclude the nail beds. They do take more time to remove- but if you soak with non-toxic gel nail polish remover then place a cotton soaked in polish remover and wrap with foil for a few minutes, this will peel off easily. make sure you use vitamin e oil on your nail beds afterward and don’t forget to moisturize your hands nightly.

Now, that you are feeling almost human again having had a nice mani and pedi go out and frolic about and soak those sun rays which are full of vitamin D. But, while you are out there showing of your own personal style don’t forget the heat can be brutal for those of us with chronic illnesses. make sure you stay hydrated remember that even a tiny amount of liquor if you are craving for a margarita with a little umbrella can seriously interfere with your medications especially if you are tired,  and dehydrated as it did me the other day. Thank goodness for mom’s who are around to help out in times of need. A tiny mango margarita with barely a touch of alcohol did me, on my birthday, making me feel dizzy and putting me to sleep for the rest of the day. Although, the saltiness and coldness of it tasted good, the after effect was not worth the trouble. Guess no more celebrating for me. This 4th of July is water and sweet tea!

So as you enjoy your favorite activities of the summer – don’t forget to wear plenty of sunscreen, sun glasses and something red if cant think of anything else to wear and above all don’t forget to Image result for fashion quoteslove,

Parkinson’s Diva

Happy Fourth Everyone!!!!

copyright@2017

all rights reserved by Maria De Leon

A Decade of Living with Parkinson’s Disease : By Maria De Leon

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IMG_3284He  {God} Frames our lives in pictures…

Last few days, I have been thinking about all the blessings in my life; especially since I just celebrated another birthday. I have marbled at the beauty that has taken place in my life over the last decade. As we visited Victoria, B.C. and witnesses one of the most beautiful gardens (Buchart Gardens) I have ever seen while (more importantly) being able to enjoy the fragrant aroma of the myriad of flowers, I knew God’s hands were at work in my life. I then was reminded of the book made into a movie ‘THE SHACK.”Image result for limestone quarry inn victoria images

Sometimes, we feel in life while struggling with this illness { and any chronic disease for that matter} that there is so much chaos, uncertainty, doubt and pain that we feel powerless. We may even feel defeated, angry, and unwilling or perhaps unable to go on fighting/living.  we feel that our days of being valued and worth something is behind us. just as perhaps the  like the quarry of lime stone in B.C. once felt proud of its rich minerals coveted by many. But, then it came a time when Parkinson’s came into our lives and we felt like  that quarry seeing its minerals simply dissipate leaving a barren waste of a landscape. Where I once thought I was defeated and had reached my potential, I have learned I was just beginning; just like all of you who suffer with an illness. As I contemplated the pictures of a barren land then beheld the transformation before  me I simply marbled at its beauty. So too I have moved from weakness to strength from spiritual infancy to spiritual maturity.  Realizing that all that goes around us looks like a BIG mess without any order and wonder why bad things have to happen to good people? Yet,  in reality is the combination of seemingly bad things intermingled with good things that allow for growth and blessings. Sometimes, we develop narrow vision focusing on one tree or flower, in our case ourselves or our own problems that all we see is barely a glimpse of a frame of an entire picture. But, when you take a step back the entire scene is revealed.  You will then see the beauty of the garden (your life)  in its entirety.  If you allow it, it might even take your breath away as it has me.

Like the garden I visited, I went from a productive highly regarded person to a barren soil with (I felt) nothing to offer. Yet, all I needed was the right soil to become productive once more. The rich soil has come about from meeting so many wonderful people around the world along the way; while fighting to make lives better by getting involved with the women’s initiative, being part of PPAC and PF (formerly PDF), and the MJFox foundation . Learning to live in the present enjoying each moment as it comes and changing the focus of my lenses outwardly rather than inwardly to me and my problems has allowed me to enjoy the small victories and grow from the defeats. Moreover, my once barren land has once again become rich, in a different way than before, due to the contribution of more skilled and talented people than I to create a beautiful legacy which hopefully can be reaped a 100 years from now when PD will be yet another disease that was eradicated like polio and smallpox.Image result for limestone quarry inn victoria imagesImage result for limestone quarry inn victoria images

These areas were once sunken and lifeless…the two pine tress you see on the right are called the “tree of life” and marked the entrance to the quarry.

These gardens began with a single person not being content with the state of  their surroundings. Although, Mrs. J Butchart was not about to abandon her home and place she loved she did not enjoy the view and chose to do something about it. It takes only one person with one positive attitude followed by a positive action to begin a whole chain reaction that can bring about change for everyone to enjoy. I believe all of us have seeds of greatness inside of us, we just have to stop ( takes initiative and determination) and make a conscious decision to  disallow our window from being framed with negative thoughts and shift our focus to positive ones.  One day, you and I will be allowed to see the completed scene in all its glory so don’t despair. Take one step at a time- this garden has taken a 100 years to reach is current beauty-pray, rest if you must, but never give up. so just because we have PD we don’t have to make him welcome and let it take over our lives – we still have control of our attitudes and where we choose to focus our sights on.

 

 

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All rights reserved- Maria De Leon MD

Letting go of perfect: by Maria De Leon

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“if you are interested in happy endings, you would be better off reading some other book .” Lemony Sniket, A Series of UNFORTUNATE Events

These last few days, although terribly exciting have been spent in a hurried frenzy. Partially, due to my daughter’s hectic schedule, planning activities for Parkinson’s awareness month, and Easter weekend around the corner. Plus not to mention pulling all night-ers while attempting to finish writing my Spanish book on top of all my OTHER responsibilities.

Yet,  when I was invited to be spokesperson for Parkinson’s foundation for Hispanic community, I jumped at the opportunity to raise awareness and encourage further participation in clinical research.

As I am KNOWN to do when I have a task to complete, I become hyper focused with  tunnel vision. However, I am learning to let go of perfect. This profound revelations has not happened over night and in no way fully mastered. If it were the case, I would get myself and family to church more often. Instead of wasting precious time fighting to get into my nice dresses and figure out a way to keep make-up from running down my face because sweaty decided to pay me a visit; which he seems to time perfectly when I want to look my best. Imagine My wild MANE not so proudly dripping like an open faucet. Of course, the beautiful Spanish fan my dear friend Alex gave me a year ago is nearly falling apart from the speed with which I furiously attempt to cool myself off and send my little friend packing. Unfortunately, he always finds his way home no matter how far I send him. Needless to say I feel, I have become like Martha in the Bible. Instead of worrying about having a perfect appearance for God, I should concentrate only on enjoying my time with Him and with those that matter most. He along with those closest to have seen me at my worst. So a few fashion faux pas from a nauseated, stiff, slow shuffling, extremely overheated women attempting to look graceful as she ascends the stairs to the sanctuary might not be such a big deal to God or anyone else for that matter.Image result for images of imperfect things

Having 7 radio talk shows in a single day, you can imagined triggered-my alter ego-control freak to go on super high alert. Even though, I managed to suppress these urges, a bit reared its head. First, I withheld my amantadine and sleeping pill so that I would be able to function better than usual so early in the am. Plus, forming cohesive sentences during my interview was critical which meant more dopamine. Then I tried 4 outfits to make sure I looked my best for national radio live streaming of face to face interview with Dra. Isabella -“The angel of the radio.” Funny thing, you could not tell what I was wearing and I wore myself out even more. Had I not try to control how I looked as much or worried about how embarrassed I would feel if I stumbled speaking do to short-term memory loss from anticholinergic. I would not have had this morning’s episode. Trying to do it all with little or no sleep in last 48hours led to me experiencing a full array of emotions in the most inappropriate of ways.

I had been craving waffles drenched [usually drizzled but I like my sugar] in caramel layered with praline covered nuts. The sugar craving only increases with extended brain activity. Since, both my husband and I been so busy this morning was our chance to connect over sugar treats which made me almost giddy. But my exuberant mood rapidly came tumbling down when the server said they did not have what I was looking for. Did they not understand that it not me but my BRAIN needing it’s  sugar fix to feel normal and only the caramel, praline nuts would suffice! Sure, I was disappointed. But, when the tears began to roll down my check, I knew my brain had enough. Of course, my husband was dumbfounded by my obvious emotional reaction to breakfast food.

I could have let it ruin my breakfast along with entire day. Instead I shushed away Mr. insane and told my brain to please send Mr.. happy down with the clowns because what we had was a BIG circus in the making.  Then, I pulled up my chair, leaving perfect behind, for a better view and brought my family for a ride in the merry go-round.

Remember not to sweat the small stuff for is in these rare moments where memories are created and bonding occurs. SO, next time you stumble make it part of the dance; but whatever you do- don’t stop dancing!

copyright-2017

all rights reserved – Maria De Leon MD

The Road to Capitol Hill: By Maria De Leon

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The count down to PD forum has begun and I have begun to feel a stir in my belly for the chance to meet with members of congress to discuss salient matters regarding the needs of all people with Parkinson’s. (on the side perhaps catch a cherry tree blossoming)

Who would have thought that one summer internship, as a high school student learning the ways of the state legislature, role playing a congressional woman would be of great benefit lo this many years later? Since that time, I have had to rely and recall my experiences in law making as I have become an active advocate for Parkinson’s disease and neurological issues in general at Capitol Hill. I am well known in the office of my State Representative Louie Ghomert  due to my many letters and phone calls. Plus, I have had the pleasure of meeting him in my home town once or twice. I still remember with fondness meeting Tip O’Neill Speaker of the House back when I was just a freshmen at college. I have also had the pleasure of serving as Assistant State Representative  for Texas for Parkinson’s Action Network for a number of years, now merged with MJFox. As Fox volunteer, I continue to serve in that function and looking forward to my upcoming trip.

Long before I was a neurologist or PD patient, I was already an activist of human rights and patient’s advocate. I am just glad that I now get to have a stronger voice and hopefully greater influence than in my youth as to the well- being of those with chronic neurological diseases particularly Parkinson’s disease.

We all have a long list of issues we would like to see addressed and changed in order to better the quality of life of those living with and caring for people with PD.

One of my biggest frustrations and dissapointments in caring and treating patients with PD is the lack of access to neurologists followed by restrictions/ limitations in access to medications neeeded. This last point, in my opinion, is the cause why so many with PD do so poorly. There are many states in the U.S. devoid of neurologists much less movement disorder specialists. One of the things, I would like congress to address is the expansion of teleneurology along with passing a law which allows patients to receive the treatment deemed necessary by their treating physicians not a third party who knows nothing of medicine!

Since 1999, Telemedicine has been used for evaluating and diagnosing acute strokes with moderate success across the country; yet despite its many benefits it is still NOT universally used.  (which by the way as an intern at UT -Houston working in the stroke unit I was involved with the inception of this technological way of evaluating remote stroke patients as well as in the stroke scale development). Of course teleradiology (extremely familiar with thanks to my husband’s profession)  has been in practice for years with great success but still with limitations due to credentialing issues across state lines.

However, in regards to this much debated subject the tide maybe beginning to turn as some who have been on the fence regarding this issue  are slowly conceiding its potential benefits. although much work still remains to be done regarding the rules of credentialing, liscencing, liability, and above all reimbursement which is fair to physicians. Nevertheless, 29 states have already passed laws requiering private insurances to pay for telemedicine delivered services same as they would for in patient care.

But, since the majority of neurological patients especially those with chronic disabilities /illnesses are primarily Medicare recipients, the federal government remains the biggest barrier to its implementation. The government has always had back wards thinking when it comes to the rules of medicine …they pay for nursing homes but won’t pay to prevent patients from getting services, treatments and medications to avoid worsening of symptoms or becoming recluse while becoming a burden of  the state and family. they refuse vital ancillary services like PT, OT, ST but instead they are willing to pay thousands more for a hip replacement which many times in the case of PD patients signifies the beginning of the end. yet, they won’t pay for the medications needed to keep these same people from freezing which cause the falls to begin with or the therapy to keep mobile. Rather than valuing the individual care of those suffering with chronic neurodegenerative disease like Parkinson’s to improve their quality of life, and increase  or continue to benefit from their contribution to society  thus diminishing the burden on society and families; currently, Medicare pays nothing for having a physician care for them remotely via telemedicine but rewards those that visit hospital/ university based clinics as well as costly hospitalizations.This type of care serves only to polorize and increase the disparity between urban and rural as well as solvent and financially needy individuals. It’s no wonder we have few or no specialists in rural communities where the majority of patients reside when the physicians time is not deemed as valuable as one practicing in urban setting.

What about thinking about our patients first ? We could unburden some of our caregivers by reducing their drive time and frequent visits to specialists for instance. What about unburdening the care partners by making patients self sufficient and independent because they are on the correct doses of the appropriate medicines not the one the insurance or government thinks we should take because it is cheaper.

An example, I like many of you am a walking pharmacy. As all of you who live with a chronic illness know that a single change can throw a wrench in the whole well oiled machine causing the whole system to come to a complete hault. This is because not only are we experiencing all the systemic effects of our illness but also deal with the myriad of drug to drug interactions thus finding a balance the more meds we take is a true art. Now when everything is fine tuned, you can breath and go about your life without having to give too much thought to the ever present PD. But what happens when every time you go to the pharmacy to get a refill you have to fight to get your meds? not only is this  extremely stressful but worse if suddenly “the insurance” or “Medicare” decide that it’s too expensive and you don’t need this medication but rather something ‘similar’ because its cheaper. They are essentially saying we don’t care about you as an individual, your illness, nor do we care if you fall, get psychotic, or end up dyskenetic or hospitalized all of which will cost insurance 10x more; never mind the emotional and financial anguish incurred by patient and family of patient as long as they same a buck on the front end. either take what they give you and suffer above consequences or like me many times end up paying a heavy price to keep my health in check and out of hospital. there has got to be a better way.

What I am hoping is that some day people with chronic neurological illnesses like Parkinson’s can have better access to providers and the medications they need. Only then can there really be a true improvement and advance in the care of people with PD. What I am also hoping is that someday I can work side by side other great public policy makers like my friend Ted Thompson (Senior Vice-President of Public Policy for MJfox Foundation) as a Public Policy maker myself doing Public Health fellowship through Neurology once my daughter has left home.

So although sometimes our roads take many unforeseen detours, in the end its the passion within our souls which fuel our destinies allowing us to arrive at the exact destination at just the right time  for the greater good of others. I guess despite PD, I remain a dreamer…after all it is the dreamers who posses the exorbitant imagination that underlies the power to change the world. I like Mr. Smith Goes to Washington intend to prove that one voice can make a difference. Now imagine what we can accomplish together!

Keep you guys posted on my travels and interactions at the hill. for those going see you there and for those not able to, I hope you feel you and your needs will be well represented. 

copyright-2017

all rights reserved – Maria De Leon MD

New Year Resolutions! By Maria De Leon

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First, let me take a moment to wish everyone a very happy and prosperous new year! I am sure that many of you as is customary made a list of New Year’s Resolutions which you wholeheartedly intended to keep. But, by now many of you like me find the resolve to keep those well –intended plans slowly begin to dwindle away as the month unfolds. Perhaps, some of you, like me, feel no need to go through the charade of making any determinations.

However, this year I would like to challenge you to develop a more proactive attitude towards achieving our goals in an effort to live a happier and fuller life no matter where we find ourselves.

Think of these as a new adventure which is going to enhance your life not cause stress or mental anguish.

Here are some examples of common resolutions people make:

I want to eat healthy and lose weight. We join exercise classes and begin to avoid all the stuff which has sugar, butter, and tastes good and replace with more incipient foods. Well, no wonder we abandon this in an instant when someone offers us a piece of moist chocolate cake, as my grandmother used to make every year around this time for my grandfather’s birthday.

Instead, let’s look at food not as our enemy but a way to connect to people, explore tastes, and discover new things. Is not what we eat but rather the quantity, I always say. Everything in moderation. Don’t eat half the cake, just a sliver or small slice. Trust me your taste buds will thank you, and don’t leave the butter out when cooking. Your brain needs fats in order to thrive. A recent, study published in magazine Neurology Today stated that people with a bit more meat in their bones later in life could potentially benefit more by protecting their brain’s against dementia. That does not mean you eat the whole tub of butter and let your diabetes get out of control but does not mean you don’t have to deprive yourself from rich foods. Eating fatty fish high in omega 3- fatty acids like salmon, sardines, and trout can be beneficial to the brain and help with memory. One of my favorite dishes and easy to prepare is salmon with mint in the oven served over rice. 

I want to stay fit or get in shape. It’s a lot easier to exercise routinely when you have a friend to do it with or better yet get a pet like a dog which you have to walk and you will exercise without trying to. Pets are not for you? How about ballroom dancing? I bet you will be the life of the party if you display some of your moves. Exercise also has been proven to prevent or at least truncate development of dementia with as little as 30 minutes a day of walking three times a week especially in women. The best way to maintain an exercise routine is finding something you love.

Another common resolution, I want to travel. Well, sometimes our health and/or our financial circumstances are not what we like making this dream a bit hard to achieve leaving us disheartened. Well, now you can have some of the advantages of traveling without leaving home. Invest in some virtual reality glasses (you can buy some at amazon for under $20) and feel like your there. Better yet, invite friends over and cook some foods indigenous to those areas that you like to visit. Better yet, if out are like me and don’t like to cook much then find a place to cater or do put luck and while you dine listen to the music of the region and even learn a few phrases. There are several little packages called “Music and Cuisine for Dinner with a Theme” which I have enjoyed using. These inexpensive treats which can be purchased on line or at Hallmark stores come with a authentic music cd of the region like Italy (several countries to choose from). They come with tips for throwing, in this case Italian – inspired soiree along with 20 plus recipes from appetizers to desserts for a whole meal experience which are easy to prepare. The experience will be just as memorable, I guarantee. Plus, you will also be learning something new another common resolution.

Self-improvement also makes top of list for New Year’s resolutions easily broken. If you concentrate on helping others and being kind to others, you will grow infinitely as a human being.

These basic changes in attitude and perspective are sure to be a hit with anyone who dares to be bold. Don’t forget to always smile and be thankful for the little things.

copyright-2017

all rights reserved – Maria De Leon MD

Reflections: By Maria De Leon

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“He who learns must suffer and Even in our sleep pain which cannot forget…falls drop by drop upon the heart until in our own despair against our will comes wisdom through …the awful (awesome) grace of God” -Aeschylus

As another year has whizzed on by, I am beginning to reflect on the year’s events particularly as so many of my Parkinson’s patients have gone to be with the Lord this year.

First, I am eternally grateful I had the opportunity to be part of the life of so many wonderful individuals and families who took me into their homes even after I stopped practicing. Particularly grateful I am to have shared this life’s journey with many Parkinson’s women who were also pillars in my community. Their faith and struggles with this chronic illness has served as a living testament to the grace of God in theirs, as well as in my life.

One such lovely lady, whom I had the pleasure of caring for; once asked her mother as a child if “God (Jesus) could come next year,” yes her mother replied. “Mom, could he come next month?” Yes, sweet child. “Could he come tomorrow? But, of course he can sweet girl. “Could he come today?” Yes, sweet child. “Then, mom could you hurry up and do my hair.”

As I learned of this story recently from the family member of my dear precious patient’s love for God, I was reminded of how that kind of love and enthusiasm is what this season is about. Even when she got PD later on in life she was always prepared and thankful sharing her love with others.

We should all strive to have such a spirit of gratitude every day of our lives not just during special seasons. I know it is hard to feel grateful or happy when tragedy strikes or when life does not go according to plan. But, one way to help us remember that adversities are not just a part of life but sometimes are meant to bring out the good in us. If we always went about our lives without a care or struggle, we would take things for granted as many of us did before we became ill. Imagine spending your whole life as an athlete training for a competition (a Race) that will never take place. Not only is it disheartening but most likely many of us would start slacking off. The biggest travesty would be to never know if we really had what it took to finish the goal.

Sometimes in order to bring the best to the surface we have to be sifted like wheat or dumped in hot water as a tea bag in order to reveal its (our) strength as Eleanor Roosevelt would say. This means that sometimes we must deal with adversity in our life’s which sometimes comes in the form of a chronic illness like Parkinson’s.

My patients have taught me that you have to take the good with the bad and make the best of it. Some of the saddest times in my life were also the most fulfilling and fruitful. For instance, when my father became ill with cancer and was ravaged by it, I spent countless hours agonizing over his care, his health, and coming to grip with the idea of losing him yet at same time I completed my book –Parkinson’s Diva – partially inspired by the loss of my dad and grandparents.

Looking back on my life, I find that almost every major decision has been guided by God. Even when I first was diagnosed with my illness and I was having trouble doing basic things for myself including driving, He was there looking out for me sending me my dear friend to help out. I was unable to get around even in my small community because I was so sleepy with the medications (Requip, Mirapex, and Sinemet) that I had become my own worst nightmare. In my mind I was checking yes to every box in the Epworth sleepiness scale – even chuckled in disbelief as I fell asleep at stop light and was startled by a loud honk behind me, once when I attempted to go down the street to the shopping center on my own. All I needed to complete the picture of narcoleptic was to fall asleep while eating and flop my head into my plate. Although, I was not far from this state; yet something inside propelled me to apply for a position as PPAC (People Parkinson’s Advisory Committee) for PDF (Parkinson’s Disease Foundation).

I was not sure what I would do if I got accepted since I could not go very far on my own or stay awake for more than an hour at a time for that matter. However, I knew it was in God’s hands. Sometimes in life we have to learn to navigate through life with faith and realize that our strength and our refuge come from above. I have had my share of disappointments, frustrations, and setbacks dealing with Parkinson’s among other illnesses; yet all I have to do is remember how far I have come, how despite the doctor’s predictions, I am still here when I was given 6 months to live 8 years ago.women

Thus, this year I am grateful for all the wonderful people I have met along the way, the stories we have shared, the battle wounds we have bound together. Plus, having shared an unexpected journey with you my readers has given me not only tremendous joy and happiness but also afforded me greater insight and compassion to the needs of those who like me are living with this terrible disease. As a neurologist, I have gained a wider perspective in life as well-that no matter how bad we think we have it, there are always worst illnesses to have and maladies to endure.

So in the end, as any doctor would tell you, in order to properly bind a wound a patient must first allow himself to stay(sit) still and allow someone else to be in control to fix the brokenness of a bone, etc.

As the year draws near, I have security and hope knowing that God has been with me in the darkest as well as in the brightest days. He alone can heal and can lift us up when we feel we have no more strength to go.

Perhaps it would be wise to start the holiday season and New Year with the thought that- life is simply too short and precious to live miserable, unhappy, and complaining about something we have no control of…

Remember, it is the natural order of things to change- there will always be losses and gains.

However, because we do have a say on how we choose to live our lives in the midst of adversity and Parkinson’s disease lets try to focus on the gains and not the losses. I choose wisdom that comes only from above ( after despair and sorrow have inundated our hearts) plus a bit of sparkle and bling. What will you choose today?

Never let your inner beauty die out. You are more than your disease.

(my Greek goddess sandals)

my-foot

As another author (Martha Beck), much more famous than I, would say, “have the courage to open up to life..” especially as we are about to start a New Year.

 

Happy Holidays from my house to yours!

copyright-2016

all rights reserved – Maria De Leon MD