How to Become A Parkinson’s Woman Who Does NOT Quit!: By Maria De Leon

“I have fought the good fight, I have finished the race- I have kept the FAITH!”

~2 Timothy 4:7

I feel like I have been gone from you a long time and perhaps by the standards of today where everything is done in a hurry and we want things yesterday…I have.

But, sometimes in order to continue serving and working we must take time to replenish our soul. So, this is precisely what I have being doing the last month and 1/2 to be a better motivational speaker and writer but above all a much better person. Of course, I took time to celebrate another wonderful year of life. I am particularly grateful to say I am getting to that age where age is just a state of mind and not an actual number since 10 years ago I was told I might not be around longer than 6 months!

All the traveling I have done over the last 7 months doing women & PD work along with motivational speaking to various Parkinson’s groups has been a wonderful experience allowing me to meet all sorts of incredible women and people across the country who are living with and caring for loved ones with PD.

You women are my source of inspiration- women like my friend Nan Little who despite having PD was able to climb Mt. Kilimanjaro.

What I have learned in my own journey of life and with PD in the last decade is that strong women NEVER quit on themselves or others no matter how challenging the task is or how though the going gets.

My own personal strength comes from my faith in God and believe you me when I tell you this is by no means perfect. I falter a lot and have to start over sometimes multiple times a day ….

I have learned 5 secrets which strong women who never quit employ- this from a Bible study on Ruth. Ruth was a woman who lost everything…her family, her husband, her friends and her own faith for a while but never let go of HOPE. I am sure many of you like me have found themselves in this situation.

What then must we do to Persevere?

When all we want to do is QUIT and hide under the covers or we simply just don’t FEEL like we can go on a second longer?

#1 We must ACCEPT our present circumstances even if we do not like them. No one enjoys a hard lesson, having a hard life, or having PD. But, having Parkinson’s may be the way to a more refined life (happier, better you). I know that although I don’t wish I had PD I have become a kinder, nicer, more caring, more patient person than I was before.

#2 We must FOLLOW THROUGH despite our feelings. These days we give to much emphasis to how we feel and what we feel; but sometimes feelings can be misleading and can paralyze us. We must have enough discipline and conviction to keep moving forward whether we like it or not. This is what got me through all those years of struggling as a student with little money and little to eat because I had a goal to become a doctor! Even if I did not like the hours, walking across a deserted Parkway lined with homeless people at 3 am, in the middle of winter storm and had to walk across miles of plowed snow blocking side walks freezing my knee caps and face off – I HAD to go! The same with PD. Sometimes we use it as an excuse to forgo commitments and become undisciplined in our life. Yet if we learn from a strong woman like Ruth despite her anger, despair, brokenness, and sadness she still went out to pick up the left overs in the field to eat.

I have discovered in my own life that when you are willing to follow through no matter what things just happen- you suddenly find yourself in the right place at the right time meeting the right people. That’s how I chose my undergraduate which led me to becoming a Parkinson’s specialist and found PDF who also led me to you fine women.

#3 We must Keep our hands OPEN. When you are accessible, people can come to you freely and can count on you. You can’t very well be a mentor to others or support others if you are not approachable and are mean, bitter and off-putting. Life will always be messy before it gets better.

#4 We must have emotional generosity. It is easy to donate money or write a check or give of your time when everything is well and you have time to spare. But, what about giving what you don’t have? I once was going to a bible study of course I was running late as usual because my pills were not working, I was throwing up, I was having a hard time dressing and so on…you all have been there at one point or another. when I finally made it I was relieved to be there although was already feeling bad for not being able to come on time so I certainly did not need a sermon from one of the elder ladies who suddenly snapped at me for being tardy and pointed out to be that if she being an older woman could make it on time – I certainly could! of course, I’m don’t have to tell you that this did not suit especially since I was already feeling physically ill. although, at that moment I was feeling less than loving to say the least I held my tongue and asked her instead if everything was okay with her because she was not being herself? she broke in tears.. She had just being diagnosed with cancer! Needless to say, all my anger melted away instantaneously and even though I was feeling lousy I found somehow courage to stay with her and console her until she found relief. Interestingly, the more I gave of myself the more I found to give and ended up feeling better the rest of the day. The best way to have your needs met is to give others what you need!

#5 Finally, keep moving forward in faith even if you don’t see the end of the rainbow.. so many people have given up just before the crossed the finish line and this is a worst feeling to have. For some reason we women are the worst at this, we are impatient when we don’t see the desired results immediately but like climbing a steep mountain with winding treacherous paths, the best way to keep moving forward is one step at a time in the right direction and keep waiting! I don’t want us to become like that famous woman who set out to row across the English channel and went on and on through all kinds of perils and overcome with fatigue, self-doubt and exhaustion gave up a few feet away because the fog had clouded her vision.

Cry if you must- but NEVER give up!

Sources:

5 habits of women who don’t give up by Niki Koziarkz

May 29

A Decade of Methamorphosis: by Maria De Leon

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It has been nearly ten years since my life changed drastically – which reminds me of the saying” be careful what you wish for.” It was about the last time that I remember feeling pure exuberant joy- as if your heart were going to leap out of your chest and take flight.

I said that I wished I could get a new start in life and reinvent myself in my forties..well my wish came true…and I Never been happier. But the journey has not been without struggles, without tears, frustration, depression, and utter rage at other times the battle seemed all uphill. Along the way, I also suffered many personal losses that nearly toppled me over but thank goodness for the small victories and the BIG overwhelming grace of my Heavenly father who has seen fit to see me through till today.

Yesterday, for the first time again I felt a spark of joy building within me and a faint leap of my heart took place within my chest; and all is right with the world. Don’t get me wrong, there is till much to overcome and much to learn about this illness and myself. Yet, I remain hopeful that together we will find more and more therapies, treatments to allow our loved ones suffering from this cruel disease to feel hope and joy once more.

I simply love the blue morpho butterfly- maybe because its beginnings are ordinary like all other butterflies yet it grows to be one of the largest most beautiful butterflies in the world captivating millions of people worldwide with its iridescent beauty. This always fascinated me especially now as I live with a chronic illness which tends to slow me down. I often think about the 30 million insects that exist around the world composed by 600,000 of species of species or so yet few insects can draw as much attention and affection in others towards this animal for its uniqueness. having Parkinson’s makes me a bit slow and clumsy just like this butterfly whose flight is one marked by slowness and punctuations due to the incredible span of its wings which is too heavy for its body yet its ability in flight is one which few other predators can master making the blue butterfly difficult to catch. the top wings are not blue colored rather have scales which allow light to reflect off this mirror like surface making it seem blue while its under side which is brown makes the butterflies appear as if the disappear through space as the fly giving them a mystical quality.

They excel gracefully above their limitations just as many Parkinson’s individuals do fooling people in thinking we are slow and dull meanwhile when our inner beauty is expose it is unlike any other. We, too, defy the laws of nature doing and performing above and beyond what our natural capabilities would have us do. Their life is short lived as some of our is due to our illness but that does not diminish in any way the joy others feel to be around us and us with them. Nor is our joy diminished as we capture a glimpse of the natural beauty of this fabulous creature. The world is much more colorful due to their existence just as the world is much better for our transformations after living with PD. This is because many like myself have been metamorphed into something much more beautiful than we were before our disease when we were self-righteous, inpatient, living for the moment, without faith, much joy, peace nor self- control, focused on the wrong priorities and truly miserable and unhappy within.

Mar 04

Gathering of the PD Goddesses: By Maria De Leon

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Calling all the Parkinson’s goddesses and divas out there..

I am glad to say that we are finally making waves in this world of PD. As more institutions are beginning to address the issues relevant to us women living with Parkinson’s disease. So many of us have felt marginalized by this illness which can sometimes rob us of our independence as well as our dignity. We have lived in the shadows for too long feeling ordinary. But, I am here to say that as I live and breath and battle with this neurological disease as so many of you do I have found the strength, thanks to my “Parkinson’s Diva” fellows and supporters, to transform myself. My physical appearance nor has my diseased changed but one day I just woke up and voila!…I had become a full fledged Parkinson’s Diva.

After spending many years worrying about my curves, my hair, my thighs, and so many other physical imperfections as well as fretting over my career… I have found that having PD has had a liberating effect on me. Looking at the mirror, I am fully at peace with everything about myself even those pesky grey hairs and even though I walk slower, not as graceful and my smile is sometimes a bit crooked I feel blessed and irrationally radiant!

Yes!, this may be the dopamine making me a bit manic since most people would agree that I am only “a legend in my own mind.” However, the friendships I have forged along this journey are real. Perhaps, it is true that “birds of a feather DO flock together!” if that’s the case I am glad that there are a lot of other divas out there – legends in their own mind as well. But, the truth is that I have been gathering divas for a long time- we have cried together, laughed together, been broken up and put back together, giving, sharing, caring and loving one another has made us all sisters of the same plight and because each and everyone of you are strong and courageous and infinitely capable of making a 101 dishes with the lemons life has thrown your way – you my friends are goddesses in deed!

So no matter where you go, just listen for the buzzing of camaraderie among women with PD who have shared tears of joy mixed with sorrow fighting for another opportunity to reinvent themselves; there you will see greatness!

In the end we must remember the word’s of one of my favorite poet’s and a grand- goddess herself, Maya Angelou who quipped: “I can be changed by what happens to me. But I refuse to be reduced by it!”

********

P.s. I am extra happy since I found out that my book which bears this blogs name ” Parkinson’s diva: a woman’s guide to Parkinson’s Disease.” will be available at WPC2016

Feb 14

Valentine’s Day in the Parkinson’s Diva World:by Maria De Leon

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All of us who are moms and have children know that the day we first heard those precious cries our entire worlds changed. Where Valentine’s Day used to be a day I looked forward to get prettied up and taken out to a fancy restaurant, since my daughter came to us it’s all about her.

When she was just a toddler , I loved the enthusiasm she would have for trying to get ‘something’ for her daddy and me to show us how much she loved us…usually some type of art design she would hand make. she would wake up at the crack of dawn to jump on our bed to please hurry up and get up so we could open our presents! (sort of like Christmas in reverse!) the joy in her eyes was all I needed. This was love personified. I have always been thankful to God for this lovely angel He put in my arms!

Over the years, it has evolved from giving us her sweet cards that said ” I love you mommy! with letters missing or upside down to me finding ways to make her happy and show her how much she is adored. We would make heart shaped candy necklaces and bracelets and get Barbie dolls wearing valentines colors or get matching teddy bears that would say ‘mommy and me’ and even matching necklaces with same inscription.

It’s no secret that I love fine chocolates – so of course I look forward with anticipation to this day to previewing all the wide selection of deliciously scrumptious chocolates available. I am a particular fan of salted dark caramel chocolates, but the thing I look forward to mostly is getting some delicious chocolate covered strawberries. It seems that as my lovely daughter has grown into a beautiful teenager, she too has developed her mom’s palate for fine chocolate. So where once, I could sit down and enjoy such treats paired with a sparkling champagne its more difficult to partake of such indulgent behavior since I became a mom of a teenager. I scout out the Internet and stores for deals of the best fine chocolates and make sure that I get everyone a box yet upon arrival they all quickly disappear and I am left with wrapping paper and the scent of chocolates in the air.

Chocolate covered strawberries disappear even faster than the chocolate without a lingering scent left behind, followed by “I thought they were mine!” Me being not so much of a kitchen goddess no matter how many times I read the instructions to melt the chocolate for the strawberries at home, I always end up burning it- so I have to wait till someone that can actually FOLLOW INSTRUCTIONS WELL do them for me like my mother, or brother or wait till a special occasion and they are sold at the store.

But, invariably the bond between mother and child is strong because in the end, she will come to lay down next to me in bed and say like before when she was a child: ” I love you Mommy! you are the still the best mom in the world, even if I don’t say it much! Sorry, I ate your chocolates but I got the ones you love right here!” followed by a big hug (which I am thankful for since does not happen much nowadays since she is a teenager).

But, Valentine’s would not be complete without the awesome, always, clever gift from my daughter….my very own diva lipstick by none other than Louboutin – in red of course! Now, I a truly feel like a Parkinsonsdiva!

Sure I have a fancy (RED) lipstick but above all I have the love of the one that matters most to me in the world- my daughter!

Happy Valentines Day to Everyone!

Wishing you much love today and always!!! Enjoy something sweet to boost that dopamine-& hug your loved ones today- hugging is the best way to release happy chemicals in your brain & Don’t Forget something RED in honor of Women’s brain health!

xoxo- Parkinsonsdiva

Jan 24

Queen for a day! By Maria De Leon

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The other day mom and I went out for a stroll and decided to stop and get something to eat at one of the local restaurants for brunch. As we walked in to a packed restaurant, I noticed everyone was wearing a tiara. One lovely lady stood out as more royally than the rest, she had a larger crown and had a purple robe on- she Must be the Queen I said to myself under my breath. as we were being escorted to the only table available in the middle of the room full of tiara wearing women I suddenly felt naked and out of place without mine. I leaned over and whispered to mom, “if I had known it was wear your crown day, I would have brought mine. ” But then I remembered that a Diva does not need a tiara to feel special, she is unique and special all in her own way. Nevertheless, I was thrilled to see a room full of women who enjoyed life as much as I did and wanted to know what this event was all about? Any club where you get to go out in public and wear a tiara is just my kind of club as long as it empowers women.

Mom and I had a great time wearing our own invisible crowns sitting among all the other divas who were sipping mimosas and laughing out-loud just as we were. Of course as soon as I got home I had to find out who these women were. I discovered to my great astonishment that we had lots in common, how I had never heard of the Pulpwood Queen Book Club I could not believe.

Turns out this was a nation wide phenomena of a women’s book club having their girlfriends weekend in my own home town which only made sense since the group was founded not far from here in 2000 by Kathy Patrick who now runs “Beauty & the Book”- to depict that reading is always in style. so like me, they too believe that knowledge is not only powerful but sexy and attractive and a way for women to conquer anything they put their minds to it even PD as long as its done with distinction and style.

What I love about this group especially its founder is their willingness to hear the voice of women and help them share their message across the country while getting a nice coiffeur. You simply can’t beat that.

I then thought that all you beautiful Parkinson’s Divas out there and I should start acting more like Queens even if for a day! Not in the nasty kind of way, demanding and having everyone do everything for you while you spend all day at spa getting massages, along with manicures & pedicures. Although, this may be a very nice treat once in a while to help relieve some of the stress of living with PD or caring for someone with Parkinson’s disease. Rather learn to walk with class and confidence as a true diva/queen should to show PD who is really in control.

Queens are always

polite and kind towards others. Sometimes hard to do especially when we are in pain. take a deep breath and count to 10.

they enjoy and feel great pride and self-worth in helping those in need, especially other women with PD.

learn to deal with the mundane and not so fun stuff of our disease with pizzazz.

think like a queen – only positive thoughts- we are after all the sum of our thoughts. you have been through a lot in your life and you are still standing, so a little PD will not topple you over.

practice your smile- makes you more beautiful and exercises those facial muscles as well.

always look dashing- ready for any occasion- don’t forget your favorite lipstick or scarf, etc.

finally remember that what ever set backs you may have it is only a stepping stone for greater and stronger victories.

Finally, remember it is the Queen who protects the king (and his house) in the game of chess as in real life!!

In the meantime, working on spreading the word on women’s issues in PD through a women’s book club.

Jan 17

Fast & Furious Life of a “Diva”: By Maria De Leon

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The year has taken off at a fast pace and I am barely able to keep up…my goal of returning to the pool and walking has not quite panned out- already beginning to feel the weight of it all. I had a wonderful holidays with my family for the first time in almost 10 years I actually felt like celebrating. I was still basking on the joy of tradition and family when life takes an unexpected turn. I should be used to this but with this illness it seems that I become less able to cope with sudden changes and stresses leaving me a bit out of sorts.

My mom had barely left when I receive a call she was hospitalized- no chance to rest. I did a mad dash to Houston and as I approached the hospital a sense of doom, grief and Deja-vu took over me particularly as I walked into the main corridor heading up the elevators to the same floor where my dad had last been hospitalized before the bomb was dropped on our lap. My mom was now across the room my dad had last occupied and we were being taken care of by the same nice hospitalist whose demeanor saddened as well as he entered the room and saw my mom laying there. Upon discharge the attendant was not certain who the patient was since both of us were in pretty bad shape.

Of course after discharge mom could not stay home alone so back to my house we were. So it has been a comedy of errors taking turns caring for each other- the worst days were when she was extremely in need of my care and I could barely function. The day was especially trying as I had to go up and down the stairs to tend to her. By the end of the day I felt like I was crawling up the stairs. I kept reminding myself that at least I got a weeks’ worth of exercise, as per my account!

Trying to get her down from a high bed to the bathroom when both of us were having various degrees of vertigo and dizziness was something to behold. Equally difficult is attempting to sleep with her since she needs rest but the stress of it all has kicked my REM behavior into over drive. More medicines for me and a bit more for her.

Then the hardest part came telling her she has a brain tumor – although most likely benign still a “BRAIN TUMOR.” Having had my grandmother die from a similar condition does not sit well with me. I try to remain optimistic and not let her see my fear and worry. I crumble a bit more inside as I imagine not having her around, I gasp for air. Even though I try not to think about it, I wonder is this also my future – something else to look forward to?

So I do my routine mental status exam to ensure no interruption of brain function but I seem to be struggling more with word finding than she is – takes me 3 hours to recall the name of a “hummingbird.” I am exhausted!

I just pray for strength to care for her and for complete resolution of her tumor. Meantime, I keep holding on to Hope and faith and focusing all of my energy on my beautiful daughter. I say to myself “Que Sera, Sera!” As I drift to sleep with thoughts of ….sitting by the beach in Hawaii.

Jan 05

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!

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.

Dec 27

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!!

Dec 20

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!

Oct 26

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:

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!

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.

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.