Category Archives: health and PD

New Year’s Resolutions for a Life with PD worth Living!: By Maria De Leon

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Happy new year to all my friends, family, and loved ones! I would like to thank all of you first of all for choosing to walk with me in this PD journey through life. Having wonderful friends such as you by my side is what life is all about. As we commence a brand new year full of possibilities in which every page is waiting to be written, I would like to leave you with a few thoughts to make your journey with Parkinson’s, or whatever chronic illness, or struggle you are facing in life a much richer and fuller experience.  My learning after nearly a half of century of living can be summed up in five parts.

5 things I want us to keep in mind as we make our mark through the New Year.

  • Stand still
  • Listen
  • Learn
  • Have Faith
  • Give back

 

These things I have observed to be the fundamental elements for a life worth living. Although a few skeptics along the road have question my positive attitude and optimism in life as well as my experience with Parkinson’s. A few people especially women have told me that I must have led such a ‘charmed’ and ‘happy’ life to be so full of hope and optimism. As I nearly chocked on the caramel I was chewing on, I thought “charming” and lucky was not a word I would have ever used to describe my life. For dear readers, I have dealt with my share of pain and disappointments and seen the ugly side of human nature yet I choose to believe that everyone has something good in them and everyone deserves a second chance.

First, I was born with a severe birth defect which according to the doctors I was NEVER going to walk so I spent the first year of my life in all kinds of casts and contraptions. Yet thanks to the love of my mom, grandfather and the grace of God, the right doctor was found to correct my problem. Ever since I started walking I have not stop and don’t intent this PD to stop me either!

I also have had multiple cancers on top of the early onset Parkinson’s diagnosis which was an irony in itself.  I had a hard pregnancy making me unable to bear more than one child, yet the joy of being a mom of that one precious child has made up for all the pain. I lost several loved ones within a two year span in which the two most precious beings in my life were included. I tended to thousands of Parkinson’s patients through the years many of whom I watch die and have wept at their bed sides along with their families. I wept even harder at my dad’s bedside when he was suddenly taken ill with cancer.

Even though these are but a few of the struggles I have faced in my life, they serve witness to the fact that like you I too have had a life full of challenges of ups and downs. Sometimes life led me to dark unfamiliar places. I have struggled physically and emotionally with gut wrenching burdens which have stretched me to my limits and then pushed me further still. But, through it all I have learned that without these low valleys and dark places, I would not have found my strength, courage, and faith nor enjoyed the peaks and mountain tops as much. Each and every one of the experiences in my life has served to shape me into the woman I am today who is able to write to you and share her experiences with you to help guide your path with this chronic illness and give you hope and a ray of light for the dark days ahead.

As I recall the words of that one woman who sneered at me as she was perusing my book looking at me sideways exclaiming “what gives you the authority to write about PD?” Simply put: MY ENTIRE LIFE JOURNEY with PD! So I am extremely glad I had the courage, thanks to some of those people who have gone from my life too soon, to write “Parkinson’s Diva ” Perhaps someone will find laughter and love once more in their life just as I have despite having and living with  Parkinson’s disease. If only one person has felt better because of my book, I have achieved my goal.  This lady unfortunately was only seeing in me the end product …a woman who has finally learned to accept herself just as she is flaws and all; who has learned patience thanks to PD, when you move like molasses you have no other choice!diva pic

Dear friends, I hope this year you work on being happy with yourself first before making anyone one else happy. This starts with being able to stand alone in solitude and fine tune your hearing to that small still voice inside of you, for mine has never let me down.

Learn to listen– I often quiet myself by first listening to my own breathing and heart beat until they are in sink and quiet. Take time to stand still at least once a day and replenish your thoughts and your energy, Then learn to listen to everything around you like the laughter of your kids, the rustle of the leaves, the whistle of the wind, the sound of the waves crashing on the beach, the silence after the snow has fallen. Particularly listen to other women. I have women friends from all walks of life and all ages because everyone has a story to tell that is powerful and unique and every one of these precious women has accomplished many feats most by the time they reach early adulthood. Make sure you absorb some of their goodness, soak in their wisdom for it is absolutely priceless. I had the absolute pleasure and privilege this past year of meeting and working with some of the most wonderful women both through the Christian women’s Corp & the Women & PD Initiative. Both had so much knowledge and wisdom to impart it was amazing.

Learn from these women, from your parents, your friends, and from anyone you come in contact with in your journey this year, for they too have a story and a lesson to share with you if you listen. Learn especially from those who love you and particularly from those who don’t. Learn to walk in someone else’s shoes as well as to see life through someone else’s eyes. Learn that in order to make a difference you must first take a chance.

Most things that were invented had to be thought up by someone who had to believe in his or her dreams even though no one else could see the same vision; plus think about it they had to have some kind of necessity, be in a low point in their life or be in the dark otherwise there would be no need to grow or change or invent anything. So with this comes Faith that things will work out for the best- that the darkness serves a purpose to hone our night vision. With faith comes hope for a better, happier tomorrow so don’t lose faith!

Finally you have to be willing to give back to others. Funny thing is that in order to grow and develop and actually enjoy life we must stop thinking about ourselves and actually think about others needs first. So this year I want you guys to renew your passions or find new passions, redefine your world, expand your horizons dream bigger dreams, have higher aspirations, broaden your visions, and  stand up for something worth fighting for like helping those less fortune than you in your PD community.

Provide caregivers a helping hand, fight in behalf of the kids with PD mom’s, aid the moms living with PD. Go ahead and confront the things that scare you such as living with a chronic illness and embrace it to the fullest. Make a difference in someone’s life, you can do this by joining me in being part of Women & PD initiative as a mentor, teacher, counselor, and friend. If you follow these guidelines throughout the year, you will discover as I have that by getting involved and truly listening to others and yourself you will change your own life. You will also be replacing laughter for the many heartaches as I have done many of which nearly broke me. However, now I have joys and rainbows where storms once were punctuated by many friends smiling at me along the way.

This 2016, I admonish you all to leave your comfort zone and take a leap of faith by doing that which scares you…interestingly once upon a time I was terrified of public speaking until I was forced to give a commencement speech in front of 1000 plus individuals. Now I do public speaking for a living. Go ahead I challenge you to Join me in me in daring to be yourself and a true “diva”  or “divo” (one that does extraordinary things with their natural talents) living a life with Parkinson’s disease worth living.
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REFLECTIONS: By Maria De Leon

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As I sit here wearing my new Grinch pajama bottoms, courtesy of my husband who thinks I look especially cute wearing them, sipping a nice cup of hot cocoa trying to think what to write as my last post of the year my mind drifts to the all the ups and downs we have all shared in our journey with Parkinson’s disease.

As the Grinch would say, the year “stink, stank, stunk…” at times.

The year commenced on a sad note having lost my dad to a rare skin cancer at the end of 2014. Then went on to  lose several great friends and acquaintances along the way many to cancer and many others to PD. But just as I lost, I also gained several new friends as the year progressed.

Together we have cried and laughed felt hope dwindle but never fully extinguish. Yet, sitting here thinking on the days gone by I am reminded of my favorite place once more -the beach -particularly when it is summer like weather outside.

Over the summer, my dear friend and I had a chance to take the girls and get away to a nice beach area in New Jersey. Even though we were not there for very long, stepping into that white sand and seeing that blue water, I was immediately transported to a different time and felt like a new person even my Parkinson’s seemed to melt away at least for a few hours.

Imagine as I go down to the beach, I typically travel with my hands full intending to make the most of the day not wanting to waste a single precious moment. So, I walked down carrying an umbrella, a chair, my bag full of essentials like sunblock, towels, and water periodically performing a balancing act to keep my hat from flying away while keep from sinking in deep in the hot sand and falling.

Although, I am Latina I don’t tan well and my pasty pale skin was a sight to behold especially for those who had already been at the beach for days and weeks. Nevertheless, I kept on and thought to myself who cares if they want to stare –let them!

Finally, we reached our destination and we parked ourselves there commencing a synchronized ritual ….planting the umbrella, extending the towels, unfolding the chairs, setting coolers, putting on tanning lotion on the girls as they were are already eager and half way darting into the water not hearing a word I said.

I take a deep breath and lean back in my chair and begin to look about at the glorious scenery. I see a couple who appear to be arguing over what I am not exactly sure?  On the other side there are some teenagers chasing one another while a woman watches them intently over a book she pretends to be reading. The cover looks cool; but I cant quite make out the name of the book…Yet, another woman (perfectly fit and tanned) sitting alone gazing far off into the sea is suddenly jolted back by a lover who leans in from I am not sure where and plants her a kiss.

At that moment, I was thinking it would be nice if my husband were here loving on me as well as I did an eye roll to one but myself chuckling realizing that no matter what I would never look like her.

However, this entire exercise served to remind me of how REFLECTIONS don’t tell us the entire story. Perhaps, others watching me would envy my solitude? ( since my friend had left me alone and gone for a stroll).

As the year unfolded, I realize all of us have faced a multitude of challenges many of which have gone unnoticed by most while some only have gotten rare glimpses of our daily lives. We ourselves have only stared at fragments of others lives who also happen to share our same affliction. Only when we have come together as women & PD Initiative, are part of organizations like PDF, PAN, MAPC, APDA, NPF, and other PD support groups do we begin to break through some of those barriers and see the real unfolding life struggles, heroism, sorrows, and daily challenges.

Despite, the fact that there are nearly 10 million people worldwide who have  Parkinson’s disease in common, all have unique qualities and experiences with life & PD. Thus, I should never presume to set my own standards for living well with PD on anyone. I rather strive to be a mentor, counselor, and a guide based on my own experience as a PD specialist and person living with PD.

As we are but a few days away from a new year, I am overjoyed for a new chapter to be written in the fight against PD, one full of hope and courage where lives are made better and disease is combated and even reversed with new treatments ahead. More important we are made stronger and wiser because we have lived through though times with PD.

WE must remember, as the new year draws near, each one of us is a one of a kind design and thus the PD Journey should also be unique and personal-we MUST own our disease in order to move forward! NOT alone; rather one where the PD community strives to hold one another -up, encourage one another, lift-  up one another, is a mentor to one another, as well as a good listener, and a friend. I suggest that next year instead of seeing someone else’s reflections from a far, we follow our hearts and get involved in someone’s life. Pave the way for someone else’s success with your pearls of wisdom…Do something meaningful and worthwhile for someone else and something good for you whether it be sleeping well, eating right, exercising-walking, yoga, bicycling, singing, dancing, praying, sculpting, boxing, painting…the choices are as varied and as endless as the stars.

 

Many Blessings from me to you and thank you for all of your continued support and loyalty throughout the year! God Bless everyone!!

The Scents of Christmas & PD: By Maria De Leon

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As the Holidays nears the stress sometimes can be overwhelming especially for those of us who live with Parkinson’s disease. As another amazing Parkinson’s woman recently wrote- “life with Parkinson’s is complicated,” to say the least. Trying to cook, entertain, decorate, while finding time to care for yourself can be difficult especially if you have a child whose birthday is around Christmas as I do. To make matters worse the Holiday season is also the time of increase hospitalizations due to strokes. We as women with PD are already predisposed to having a brain attack according to a data presented by Dr. Allison from the University of Pennsylvania, at the Women & PD Initiative Conference women with PD. The risk increases as PD progresses.

Therefore, this and every season we must remain extra vigilant guarding our health and taking time for ourselves. But, how do we do this since we barely have time to sleep or take care of our basic mandatory medical needs from a long to-do list which seems to get longer and longer each year as our disease robs us of our energy and strength at times.

This season, I recommend using aromatherapy from the smells of Christmas already all around you to help release the best known ‘happy’ hormone in our brain –endorphin a naturally occurring opioid which is produced from the anterior pituitary. This wonderful chemical helps relieve pain, fatigue, and gives us a lasting satisfaction providing a true sense of happiness. Although, we as PD patients experience a loss of smell, a small report showed that loss may be specific to foul, putrid odors while sweet and flowery may be preserved that combined with fact that most of us have a dysfunction rather than a complete loss of smell until disease is advance thus we can still use whatever portion is left to our advantage. Plus, since loss of smell is linked to depression, fatigue and memory loss perhaps boosting our olfactory nerves and stimulating them can makes us combat any Holiday blues while filling us with joy and energy.

As you go through the holidays, I recommend that you make a list of the things that are important, give yourself extra-time especially allotting time for naps or unexpected wearing “offs,” let others know you may require assistance and make sure you ask for help; but most importantly make time for yourself! Surround yourself with rich aromas that will help you relax and build beautiful new memories each time those same fragrances are encountered.

For instance, as you are in the kitchen cooking and preparing your Holiday/Christmas meal make sure you add some spices to titillate your senses. This is especially helpful for those of us with more severe olfactory loss (no smell). The spicier the food the more endorphins your brain will release, this may be the reason why I am always happier when I eat my mom’s cooking which is so much spicier than mine.

We know that a big part of the holiday season is baking as well as consuming a myriad of desserts and sweets. Chocolate my favorite substance in the entire world is by far the most complete substance in its ability to release several of the brain’s ‘happy’ hormones like dopamine, serotonin and beaucoup of endorphins. Go ahead bite into a nice warm chocolate cookie or a dark chocolate cake especially one infused with vanilla extract. If you are baking make sure to take a big whiff of the vanilla or the chocolate before adding to your cookies or cakes particularly if feeling anxious for this will help calm you down. In fact have a few vanilla scented candles or oils around the home to give you that calming effect.

Have some citrus foods (orange, lemons) around and peel if stressed, the odor which will linger in your hands will also help to uplift your spirits.

I also love the aroma of peppermint particularly on a cold crisp day it permeates throughout the house –boosting my spirits, and invigorating my spirits helping to stimulate my mind and yours if you try as well, you can either buy as an essential oil, candles, or wall plug ins. Of course what Holiday Party can do without candy canes!!

Lastly, for those of you who still love to enjoy the smell of a natural tree a pine or a cedar are the best ways to uplift and invigorate your spirits and your mind.

My hopes is that everyone has a wonderful healthy, happy, joyful Holiday season and keeps the Happy hormones all year long for a very prosperous New Year!

Enjoy the scents of this and every season of your life along with your loved ones!

 

ALL I WANT FOR CHRISTMAS IS……By Maria De Leon

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This past two months, as I struggled to get a new secondary insurance to cover my long list of medications  as well as obtain a new plan for my family,  I began to realize more and more that this country has completely lost sight of what’s important. Having been forced by “Obamacare” a.k.a. Affordable Care Act to give up our reliable insurances and go on Medicare or suffer the ridiculously exuberant prices of both having an insurance that does not cover anything because for a great majority of chronically ill patients the deductibles are upwards of 3,000 up to 10,000 which was the case for my family and I or get penalized for NOT having insurance, all the while not being able to “afford” neither the medications nor the doctor visits which ironically was the reason why such laws were instituted.

As I sat at my doctor’s office waiting for my appointment, long over due because insurance refused to pay my visits on account that they felt I should be on Medicare, I heard the complains from the patients in the waiting room, the staff, the nurses, and the doctors  about how terribly broken the system has become. As I listened to the stories of medication denial, of exuberant prices even for generics which also require preauthorization along with numerous letters, forms, and phone calls from the nurse and doctor just to get a single medication or treatment approved, the poem “SEE ME” came to mind.

“What do you see…what do you see? What are you thinking when you look at me?-….I think of the years, all too few- gone too fast, And accept the stark fact that nothing can last. So, open your eyes, open and see.. look closer SEE ME!

So My Wish for this Christmas is not a cure but a change of heart… a true understanding of the needs of the chronically ill. Chronically ill patients like Parkinson’s individuals have limited resources due to the nature of the progressive illness – we already stress about finances and the future well being of our family and loved ones and having to add a burden of  choosing to eat or take medications is not something we should have to do in this country or any country for that matter. What good is it to have new medications if the majority of patients can not afford? it serves no purpose to spend billions of dollars in research if no one is allowed to diagnose, treat, or implement care, I say this with the utmost respect. However, as someone who has done research, trained as a doctor and is a patient, I say the most important thing is quality of life and living a full life and you cannot do this without the aid of a doctor that is there to treat, knows how to treat and when to treat so that life can continue.

The problem in this society is that we do not value people. We undervalue the doctors, the skill and the time required to become experts and the time needed to care for a deeply complex disease such as PD. While I was in practice, it took me an average of 55 minutes to see a PD patient. the same is true for my MDS doctor. This means that you can only see about 10 patients a day in clinic and since most PD patients are on Medicare it means lower reimbursement especially since it has been dropping steadily each year since the Clinton administration. Now since Obamacare those in solo private practice in rural communities are struggling to stay afloat. That is  worst for neurologists and PD specialists because we don’t do a lot of procedures which have high reimbursements therefore what practicing neurologists make in a day goes mostly to maintaining overhead -that is to say payment of staff which has escalated considerably due to all the red tape of having to deal with insurances. When you work primarily to pay your staff and office bills while incurring all of the liability is no wonder so few doctors stay in rural areas. this combined with already shortage of neurologists due to being a difficult field, the gap is going to continue to increase while the needs of PD patients will continue to go unmet unless the government along with the leaders of  PAN and other Parkinson’s Foundations step in to better take care of its neurologists especially considering that the population is aging which means increase in PD along with other neurodegenerative illnesses.

I believe that it is within each one of our powers if we unite to make a difference and to bring about change. Parkinson’s patients SHOULD NOT have to continue to experience a great amount of dyskenesias or hospitalizations because they are not able to afford new treatments costing the government and society much more money in the long run than if they would set aside funds to care for patients even if it means decreasing funding research since we are not optimally using the medications and treatments we have at this point. Example- I have been on Azilect for almost five years through samples and done well. However now that I am on Medicare of course its not covered!!! The insurance wants me to try things that are not the same although they claim they are… so I asked my pharmacists how much it would cost for me to purchase without insurance and I almost fell backwards when I got a staggering $1,300 for a month supply so no wonder patients continue to deteriorate in the face of so many different types of drugs and continue to take primarily the old levodopa/carbidopa which alone and for extended periods of time will CAUSE adverse side effects simply because it is the ONLY affordable drug! Well I think it is time we unite and change this short sighted thinking and begin to look at the BIG picture and TRULY focus our vision on the PD community and SEE THEM with their dreams, ambitions, desires, aspirations, struggles and beating hearts full of Hope and Optimism for a better tomorrow…

This is my Christmas wish….

MERRY CHRISTMAS EVERYONE!!!!

 

 

 

(Please feel free to comment or remark on your experiences- I admonish everyone in the various states to send a letter to the directors /assistant directors of PAN of their respective states as to their experiences in obtaining care but especially medication-thank you-God Bless)

 

 

 

Feeling Distressed Today? by Maria De Leon

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Lately, like so many of you, I too have  been feeling distressed- not being able to show up on time to events, or able to attend prior commitments. I used to be the life of the party and a person who could make plans months and years in advance and always able to keep all my commitments. I know that some of you out there living with chronic illnesses and Parkinson’s for a long time know exactly what I am talking about. I have heard many of you complain about the disappointment and distress felt when you or your loved one are no longer included in invitations to parties, gatherings, dinner etc. because you are also unable to always show -up. It’s rather an unnerving feeling knowing that people don’t count on you any longer or even expect you to show up.

While trying to get my head around these feelings experienced by all of us at one point or another when living with an illness like Parkinson’s, I began thinking about my favorite place- the beach.

I you are like me one that enjoys walking down the shore barefooted getting your feet wet as the waves dance around, you probably have taken inventory of common things found on the beach as you have taken many a leisurely promenade.

You most likely saw pier posts covered in barnacles, distressed boats and oxidized iron as you strolled on by. In another time, like us, they were pristine and remarkable to behold. I want all of us to remember and emphasize the fact that although these objects like us (or rather the way we feel sometimes) are worn, tired, chipped, dented and not so pretty to the naked eye are still Beautiful!

This is because, like us, these objects wear the scars of time, hardship, and experience with pride and genuineness. Perhaps, after the waves of PD or caregiving have pelted your body over and over through the years, you too are feeling like these distressed items. Maybe you once had a great career before PD; but even though it might have been a choice to leave it or make necessary alterations- they no longer exist in their previous form.

Like me you are also completely at peace with your life choices given the cards we have been dealt, yet there may still be days when you might feel alone and distressed. Slighted by someone’s lack of understanding, compassion, or feeling excluded may cause the ‘what-ifs’ to creep in.

But, we must not give in to guilt, sadness, much less anger. However, consider this- the only way an object gets distressed is because it has been the best in its field; therefore continuously used and of service. You have been useful and of benefit to more people than you will ever realize and you have the marks to prove it. Just like the distressed furniture found on an elegant and gorgeous beach home invite us to rest and enjoy the view thus contributing to our life’s story.

The same is true for us who are feeling worn out- you have and persistently contributing much to make someone’s past, present, and future better. Your empty seat at a business meeting, lecture hall, medical team, football game is only an indication that you have been instrumental in forging the next generation of caregivers, advocates, volunteers, citizens, and professional people. Remember, just because at the moment you are not at the table of the ‘movers and shakers’ that does not mean that you are done or finished with the work that God has put in your heart or is your destiny to complete until we are all called Home!

Let us instead dwell on the prospect that our ‘what-ifs’ might at some point blend into the ‘what-now’s.‘

Walk rather, on the beach or wherever you choose, always with head up high displaying your marks of distinction- which are a confluence of both your hardships and victories knowing that the past chapters were purposeful and of great impact. So, don’t try to fit in or please a crowd to avoid feeling distressed instead be your genuine self proudly displaying your years of wear battling PD along with your very own colorful bright pink eggs – like the ‘leafy sea dragons’  who although they are able to camouflage their eggs choose not to.

Go ahead, embrace your Parkinson’s disease or whatever other illness you might have and be yourself. Those that love you and matter will always be around to comfort you and support you in times of need and will always have a seat reserve just for you!

@copyright 2015

all rights reserved by Maria De León MD

 

Cancer & PD: What now ?: by Maria De Leon

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“You  promised me, Lord, that if I followed You;

You would walk with me always.

But, I have noticed that during

the most trying periods of my life

there has only been one set of footprints in the sand.

Why, when I needed You most,

have you not been there for me?

The Lord replied, “the years when you have seen only one set of footprints, My child, is when I carried you.”

excerpt from ‘Footprints in the Sand’-  author unknown

Each time I have had to confront the ‘C’ word I have found solace in this beautiful poem. I hope you can do the same knowing that you are not alone and greatly loved.

Seems like when everything is going well in our lives even with PD because symptoms are finally controlled and we are in our groove doing our own thing life is pleasant and full of possibilities. Seems that the sun might be a bit brighter than usual and the foliage we love is more colorful than previously thought. But, as things fall apart or tragedy hits our lives, we suddenly experience a souring in all our lives pleasures and activities.

You begin to think it is bad enough I have to live with Parkinson’s disease but now I have to deal with this monster called CANCER!

Some may be tempted to do nothing or become paralyzed and consumed by fear of the unknown.

Today, I just want to say “you can do it!” to those of you who are battling cancer in the midst of PD.

You are probably feeling like life is completely unfair, right about now. Well, let me put your mind at ease-IT IS!

However, this is no reason to draw up into a ball and hide under the covers- which I am sure you feel like doing some days more than others. Perfectly normal- I have been there way too many times myself. This my friend is the time to ‘summon your inner Diva’ and give it your all. When we were given a diagnosis of PD, we felt as if our world was ending but nothing compares to hearing you have cancer. Suddenly, the days seem so finite and you begin to take account of your entire life. This itself can be an eye opener because when we are faced with mortality somehow things automatically come into focus and we can clearly see what is truly important and of value in our lives. Go ahead and use this experience my esteemed reader as a chance to grow spiritually as well as an individual.

I like to think of these experiences as pearl makers!

For those of you who are oyster lovers, fresh oysters are a big treat, but  you also know how stubborn and hard the outer shell of an oyster can be. Shucking an oyster can be hazardous but sometimes can prove even more rewarding then anticipated when you discover the treasure within. We sometimes can become hardened by lives circumstances as in living with a chronic illness like PD protecting our soft, vulnerable inner self.

But, it may take another illness like cancer to put a crack in our shell causing us major irritation as a grain of sand does to the oyster which through much pain, discomfort and adversity is turned into a gem- a beautiful pearl!

First realize that you are wonderfully made and everything has a purpose and a time under the sun. Then let go of any anger, frustration, and pity party’s and concentrate on getting better.

This means take care of your Parkinson’s disease to make sure that you are strong physically and mentally to undergo any and all treatments required. Listen to your body- rest when you are tired and eat whatever your body demands -it always knows what we are lacking in. Let your friends and family pamper you and don’t try to do everything yourself or put up a front of being well when you are not. Although, the recovery will be slow and uncomfortable it will be much quicker if you allow yourself time to heal.

When I underwent radiation for my second cancer, I spent the first 6 months just sleeping. I was so exhausted that even watching a movie would  drain me. Even the last 6 months of that year- I relied on friends heavily to help me get things accomplished in the house and so on. Don’t let pride get in the way- we all need help sometimes.

Despite the fact that cancer is not easy to confront and it cant always be beaten- it does not have to get the best of us. we can still be a blessing to others.

Remember, that a spirit who is able to find good in adversity is a true gift from above.

Lighthouses: by Maria De Leon

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…”though I sit in darkness, the Lord will be my light.” ~ Micah 7:8 NIV

I love lighthouses. Whenever I get a chance to travel to an area known for their lighthouses, I never pass on the opportunity. These grand structures are majestic and mysterious in nature for the power they hold; yet despite their veritable importance they always stand aloof, detached and solitary. However, these magnificently stoic architectural works of art, since no two are alike, serve a very distinct function for those in need.

Sometimes, as in living with a chronic illness like Parkinson’s disease we can become so overwhelmed that we are no longer capable of identifying treacherous terrain in front of our own eyes. If we do not heed the warning of others who have a lighthouse view, the passage can turn unsafe and even dark.

Although, caregivers who are mostly women are increasingly stressed in direct proportion to the number of years spent in the “business” of giving/providing care when help is offered, the extra assistance is not readily accepted as was the case in the care of my father. One of the main issues is guilt. Many caregivers feel ashamed or guilty in admitting they require outside help; thus might even turn it away when offered or not actively seek it. The second problem I encountered in my patients as well as in my family was a sense of duty and responsibility to ease the fears, anxiety, and shame the patient may feel as he or she is losing independence and unwillingness to appear weak in front of a stranger. this was my dad’s problem who refused outside help because ‘no one would take better care of him than my mom and I.”

Here are a few tips to help spouses, care-partners, and caregivers recognize and accept outside assistance by helping them work out their fears and ambivalence.

First, we must convey to them that the perspective is much different and broader with a myriad of options when standing at the top of the lighthouse with a clear view of everything than when in the seashore in the dark and feeling alone.

The temptation to strike out on our own is always present and stronger especially in those of us who are used to taking care of everything and everyone. Initially, more so if the person is very adept, like a ship that disregards the lighthouse warnings, will continue to progress and maybe even be successful in the day to day care of their loved one for a time. Ultimately, causing not just one’s one destruction or demise but that of our loved one whom we are trying to protect; because if you are not well then neither will your loved one who then might have a quicker descent.

Therefore, learn to swim parallel to the riptides heeding the following warnings from the lighthouses in your life to a happier more successful outcome for both you and your partner.

Recognize the warning signs:

  1. Irritability– if you find yourself often frustrated at the person whom you are supposed to care for, including neglect or abuse ( verbal, emotional, physical) -NEED HELP ASAP!
  2. Depressed– you are experiencing symptoms of depression yourself lasting more than 2 weeks- especially if wanting to die, harm yourself or worse harm the person whom you care for, this includes wishing they were dead or would die soon.
  3. Others are worried or concerned about your coping– friends, family are noticing changes in your mood or behavior.

If you find yourself in this group:

  • Allow yourself to feel guilt followed by relief- forgive yourself- don’t be so hard on yourself. You CAN NOT DO IT ALL. NO BODY CAN BE ALL THINGS TO ANYBODY!!! ONLY GOD!!
  • Talk to your physician, a counselor, a spiritual leader.
  • Go to a support group
  • Go to a psychologist/psychiatrist
  • Start making plans for yourself again as you redefine your role as caregiver with assistance/new found help.

Resources for Help:

http://www.eldercare.gov

http://www.shipnpr.acl.gov.

http://www.pdf.org

http://www.caregiving.org

http://www.caregiverstress.com

http://www.assited-living-directory.com

http://www.eldercarelink.com

@copyright 2015

all rights reserbved by Maria De LeonMD

Something’s Missing: By Maria De Leon

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“Let God’s love touch you like an ocean breeze…”

A boat without a sail, …an empty bird’s nest, a lighthouse without light…we can walk past these common objects a hundred times without paying much attention or allowing our minds to focus on the missing parts. Yet, when something happens in our lives out of the ordinary, like getting a diagnosis of Parkinson’s disease (PD), we suddenly stop and begin to take notice of the missing components that rightfully belonged with those things we never paid much mind to. We ourselves begin to feel that something within us, once an integral part of our beings is no longer there.

Can you relate to this feeling?

The longing for the old self can be devastating initially. No one else can comfort us no matter how well intended they are. Perhaps, friends are encouraging us to look beyond the illness directing our thoughts towards the blessings in our lives such as family, friends, and loved ones. But despite the good intentions, the initial optimism from everyone else can reinforce feelings of negativity within us, or heighten our grief and depression making us feel like somehow we are the ones not strong enough! Ultimately, this does not fix the desire of the newly diagnosed PD person to revert to the old life, to wish it was all a dream, or to prevent the mourning of something lost.

However, I say to you my esteemed reader that if you have a loved one, a friend, or a spouse now feeling this way, the best remedy is a tender hug and a listening ear for as long as it takes without commentary.

To you who have just been diagnosed with PD, I say courage. It takes lots of it to let go especially in such a deep personal level when the future seems uncertain and frightening. It may require you to change the focus of your life, as well as the direction of your sails, and begin expanding your energy on new horizons but it is a step that must be undertaken at some point. The grief and tears MUST cease and the windows of our hearts once again opened wide open if we are to again enjoy life despite PD and have peace in our hearts.

In time, you will discover that part of you is not missing at all it has simply transformed itself giving birth to something more beautiful like a caterpillar which has morphed into a majestic blue butterfly.

Go ahead spread your wings & be free!

blue@copyright 2016

all right reserved by Maria De Leon MD

Go PINK & THINK BIG! : by Maria De Leon

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“Don’t quit, suffer now and live the rest of your life as a champion!” Muhammad Ali

October is breast cancer awareness month but for those of us who live with Parkinson’s disease in our lives it is always PD awareness month!

But, today I would like to start a new campaign in support of all my Parkinson sisters around the globe who also have had the misfortune of being diagnosed with breast cancer while living with PD. I just spoke to a few young women the other day who are currently undergoing treatment for breast cancer while battling their PD symptoms. Take it from someone who has had the pleasure of having recurrent melanomas and thyroid cancer (increased risk in PD as well) in the midst of PD to sympathize with your plight! Although, technically not the same. However, the anxiety, worry, uncertainty, and initial apprehension are all the same especially when someone with poor  bedside manner calls you after a long period of time after tests, which being in the medical field would only indicate everything was okay, only to be told over the phone test are abnormal and you have 6 months to live!

The stress of having to have multiple doctors visits, possible surgery, followed by chemo, or radiation or both can send your PD symptoms into overdrive! Even if you had no PD any normal person would be spent. The mental anguish of perhaps having a mastectomy weather unilateral or bilateral can be equally heart wrenching. Here you were perhaps never paying a single thought to those mounds of tissue hanging from your chest and might have even complained about them a time or two about the size or shape etc. But, as soon as someone threatens to remove one it suddenly becomes a personal affront on our femininity. Although, we cant rationalize the sudden attachment to these so called breast, we truly grieve for their loss. We suddenly may feel less than we were or less worthy and we feel shame and guilt for thinking such superficial and inconsequential thoughts after all removal may mean saving our lives – yet we grieve. These feelings usually are magnified in the presence of our already debilitating PD illness. So beware. Do not make any decisions when you are depressed- it leads to poor judgment.

I say grieve if you must. It is absolutely normal to feel the loss of something so feminine as your breast. But, don’t dwell on it. you are still you. your beauty comes from within. your spouse or partner will still love you for who you are. you must first love yourself. Talk to your doctor, a counselor, a friend, even throw a party for the loss and celebrate new beginnings- increase medications for depression before undergoing treatment. Put your affairs in order. this will give you added peace of mind and give you some control over your life. Talk to your physician about increasing dopamine medications temporarily to handle the stress of surgery, chemo, radiation etc.

Then concentrate on getting better. Fill yourself with positivity and love. Meditate and fight as if your life depended on it because it does and others are looking up to you! Remember you are strong. You have within you the seed of greatness!

Early Detection is always the key to best outcome with any cancer-especially breast!!

Because unfortunately we women with PD have an increased risk of breast cancer particularly those with the LRRK2 gene we need to always be vigilant. Discuss with your physician this risk so that you can have appropriate follow up especially if already family history of breast cancer.

  • Do routine self -exams-best to do in the shower!
  • Exercise & maintain a healthy weight
  • Breastfeed if possible (decreases risk of breast cancer- too late for me!)
  • Limit alcohol intake which will also aid with your PD symptoms
  • Limit menopausal hormone replacement (still controversial- talk to your neurologist/MDS- some studies have shown reduction of PD risk after intake-not going to change if you already have PD) [Parkinson’s Diva]

GO PINK & THINK BIG- I KNOW YOU ARE BIGGER & STRONGER THAN EITHER DISEASE!!!

Sources:

http://cebp.aacrjournals.org/content/16/6/1081.full

http://jnci.oxfordjournals.org/content/102/6/371.full

Woman to Woman Parkinson’s initiative : by Maria De Leon

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A few days ago, I wrote about the new women and Parkinson’s initiative and our goal to empower every woman living with pd to be more than the broken pieces left behind by a cruel and often devastating illness. as a Parkinson’s specialist I often found women to be the most affected by this illness whether they were the patient or the spouse. Some how we always seem to bear the brunt and full force of the illness which can weigh us down over time if we don’t have proper resources and support( severely lacking in many parts of the country and world) Therein lies the biggest difference between men’s PD and women’s PD, in general, men have much better support financially, emotionally, and physically. While women often find themselves not only struggling with negative symptoms such as depression and anxiety but often have to go at it alone. Given the enormous pressure on the shoulders of a single individual who may also be a single mom and sole provider, sometimes it is just easier to hide behind a mask, in this case PD, and lose yourself.

One of our biggest focus in this initiative for women with PD should be as  mentors. This unique privilege bestowed upon us at this conference encompasses all the roles I previously detailed in my last blog -becoming advocates, role models, resource women, and excellent listeners. 

We must Never Forget and Always Remember that we are women and human beings first and foremost then Parkinson’s patients!

Because Parkinson’s is often referred to as a “public disease” the physical manifestations like tremors and masked fancies can exert an even more devastating effect on women’s self esteem. this is Unfortunately due to fact that people are frequently perceived and labeled by their public appearance. Looking depressed and being depressed can worsen this misperceptions of being less than causing further isolation especially as disease advances. but, if we have someone guiding us, lifting us up, and catching us when we fall we too can walk proud, head held high in our best attire even if we are shaking up a storm!

Therefore, it is our job and duty to lift one another up offering practical help when feasible like accompanying her to doctor, take grocery shopping if she is not able to, provide phone numbers to community resources, baby sit, pick up kids from school, and so on.

Always be an encourager. You may be the first person who has ever shown any confidence in them as a woman and a person of value.

Be a counselor with her best interest at heart. Start by being a good listener. Don’t be afraid to nurture emotionally and spiritually. Before healing can take place on the outside it must begin on the inside- remember this!

Most impostant of all be a guide. You have been where they have not been yet so model so they too can follow the path. They need to be able to follow how to fail as much as how to succeed and still stand with dignity in one piece and stronger than before the storm.  Hold them accountable as you would yourself.

Doing these things no not only will give meaning to your own life with PD (releasing beaucoup serotonin) from your brain but it will also do the same for her; thus warding off depression. See serotonin is what gives us sense of accomplishment and self importance and worth so it’s a mutually beneficial endeavor.

together we can unrevel our inner gifts and find our true inner beauty and help us  leave the mask of PD behind.

The saddest thing for me would be for us to live a life with PD (or otherwise) as if it were a masquerade ball but upon leaving no one would ever know who we were.