Bridges & Scenic Roads: by Maria De León

“Nothing comes ahead of its time and nothing ever happens that did not need to happen.” Byron Katie

As I sit here fighting another bout of bronchitis, yet again; I am inclined to feel a bit sorry for myself. But, all I have to do is stop and look at all the road I have covered over the last year to quickly shake this silly notion.

I have never been a very patient person especially when traveling. I like to zoom, zoom. I am a highway kind of girl. I remember the first time my husband and I took a trip toghter as newly weds to visit his family, he thought it would be nice to take the Natchez Trace Parkway. I nearly lost it; it seemed we had travelled for an eternity at a turtles crawl (can’t travel faster than 45mph). Had I been driving, I would have probably gotten several citations or found a way to get off faster than immediately.

At the time, I was not interested in the beautiful sights we encountered along the way nor in the fauna present. I simply wanted to arrive at our destination. This was the state of my life at that time-pretty much rush, rush between work, family, commitments, conferences, etc.. I was always looking ahead at the next destination never really enjoying the moment for the most part until Parkinson’s decided to pay me a visit and make its self at home. Suddenly, the breaks came screeching on putting a stop to all my senseless running around.

Over the last decade, I have had to learn to enjoy those backroads and not be so concerned about the destination. We all know that living with a chronic illness like PD permeates into all aspects of our lives affecting everyone which comes into close proximity. thus, more than ever we have to learn to find a balance and enjoy each moment as it comes and not be paralyzed or fearful of what might happen next. Living with PD is truly unpredictable day to day and even hour by hour. Friday was another perfect example of this. I woke up feeling great attended a GO Red luncheon for women with my friend. We had a blast but by the time I got home in the afternoon, I was out of commission screwing up all the evening and weekend plans.

Instead of worrying about reaching some obscure destination, or fretting over the plans that have been ruined (these days I prefer calling it altered rather than ruined). I have come to enjoy those unexpected detours along the way which may lead to unexpected finds like an old wooden bridge or a beautiful waterfall. These sometimes brief other times extended detours through backroads and scenic routes has helped me discover myself, my true friends, my family and many other people who suffer chronic illnesses which I might have not gotten to know otherwise. This weekend I got to enjoy the company of my daughter and husband although from a distance since I did not want to contaminate them.

When I find myself feeling restless and impatient like today, I remind myself that those eternally winding back roads are helping me build a bridge to my ultimate destination. As we know some bridges are short and some are much longer.

Those bridges took years to build some even had to be rebuilt. Meantime, i keep moving forward even if I feel it’s only one step a day. Someday my bridge will be completed and it will be a grand architectural monument just like those magnificent bridges, I love (e.g. Sydney Harbor Bridge, the London Bridge, and the Golden Gate Bridge to name a few). My life like those grand architectural structures will stand as a testament of a victorious life which conquered adversity and overcame big odds to bring beauty and function to others.

Thanks to my illness, as my favorite poet Frost once penned, I have taken the road less travelled and this has made all the difference…

I hope today wherever you may find yourself, you find the strength and courage to enjoy those unexpected detours in life and beginning anew building those magnificent bridges.

Sep 25

Setting Appropriate Boundaries when Living with a Chronic Disease like PD- by Dr. De Leon

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Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on boundaries. This class has been fun and challenging at the same time particularly in regards to the physical realm.

Of course, I am always thinking about the relation and interchange of one aspect of my life to another. As I have been preparing lessons for my students, I realized that these same rules of good boundary setting could be applied to those of us living with Parkinson’s disease.

If you lived long enough, you have undoubtedly understood the importance of having clear boundaries (limits, clear likes and dislikes etc.) in order to have a healthy, happy life. This means knowing exactly when to say yes to things and when to say no. For instance, many of you know how involved I am with the Parkinson’s community thus I had been looking forward with great anticipation to traveling to Portland for this past week’s World Parkinson’s Congress. I had my room and flight reservations all squared away since the early part of the year. Then my health took a bit of turn …as I began to feel better the question was “should I go or should I stay?” (With that little giggle running through my head). Needless to say that during the moments of feeling well, I was completely ready all for another great adventure which included meeting so many new and old friends.

Yet, I had to be realistic about my health. In the end the toll on my health, assuming I were better to fly such a long distance, would not be worth the experience. Learning to say ‘no’ to the seemingly good things that can potentially be harmful in the long run is an example of having clear defined boundaries. Plus had I gone, I would have missed all the drama and excitement of my daughter being asked out to her first homecoming dance. These moments are priceless.

Seeing the excitement and drama unfold throughout the week led me further to think about how we cope and live with PD particularly in the context of raising children and teaching them appropriate boundaries.

We all know that having kids is a difficult thing – each time you think you have mastered a particular situation there comes a curve ball. We all worry about raising well- balanced, happy, self- reliant individuals. Those of us with chronic illnesses like PD know that the job is even tougher when we don’t even have enough gumption to shower or get dressed some days.

What worries me is that sometimes especially because of our illness and fluctuating symptoms we give mixed signals to our children making them confused due to inconsistent limits. One minute we may require them to grow up faster act like adults, be the parent, the caregiver, and other times to simply be a loving child. I ponder about the influence we might exert on our kids as our mood see-saw according to our pain levels and other motor & non-motor fluctuations. Are we being loving and tolerable to their needs one minute and harsh or overly critical the next?

If the answer is yes- we may be guilty of inadvertently causing our children to grow up being guarded.

In addition, specific traumas like dealing with a debilitating illnesses such as PD may lead to a questioning of 2 basic principles needed for kids’ essential growth into healthy individuals.
One is that they have control over their lives
Two that the world around them is a relatively safe place.

If we are not careful, they may grow up feeling these essential foundations are distorted or shaky and thus feel that they have no say in their life’s or situations. The same thing can happen to some of us who live with chronic disease in context of being able to advocate for ourselves. This feeling of lack of control can lead to poor health care and a less than optimal quality of life.

There are two important rules to healthy boundaries that will help us experience our world differently especially when we seek care for our chronic diseases.

-responsibility
-respect

First, don’t put up with doctors or healthcare professionals who are jerks because they don’t offer respect to others while commanding it themselves; but remember that we as physicians are human too. In all honesty most of us are really trying our best and want to help. However, in these last few weeks as I became more frustrated after seeing several new physicians, I had to take responsibility for the way I was feeling. I had to revert to my role as a doctor to remind me how I it was that I felt and treated chronically ill patients (those of us who not only have an extensive medical history, long list of medications with an equally long list of physicians and specialists they have or are currently seeing).

Although, I considered myself to be better than most at dealing with patients with chronic diseases partly due to my own personal temperament- thriving on challenges and solving difficult puzzles. Yet, even I remember being extremely frustrated at some occasions with a couple of Parkinson’s patients whom I could not make better try as I might. This frustration and powerlessness sometimes related to patients as if I were angry or uncaring. At other times, it was difficult to convey to patients who wanted a quick response (for it’s our human nature as well as a natural expectation when you live with chronic pain or a disease permeating all aspects of life) for which I had none. I felt that same disappointment, as I am certain my own patient’s experienced at times, over the last few weeks.

Thus, I had to remind myself that it was their first time seeing me and they did not have the breadth and depth of knowledge I possess having lived with my disease for 10 years. It is important to keep in mind that even when we see doctors who are specialized in our own chronic disease such as PD – they have not lived in our shoes. They have the general understanding of the complexities of a disease like PD but have no insight into the daily intricacies of living with it as it happened to me – is like knowing everything about living on planet earth vs. actually living here. Such was my knowledge of PD until I became a patient of the same.

I determined that people like us because of our extensive knowledge are the knives easily tear the veil unmasking the illusion of physicians being in complete control and able to FIX things (people) and cure diseases. I know what being a doctor is and know how they feel because I am a doctor 100 % of the time even when I am trying to be a patient which has been more often as of late. I know that because of my knowledge, I too scare my doctors a lot of the times. Knowing that we scare health professionals is the first step to a successful patient -doctor relationship. This is the second rule- respect for the practice of medicine. This also means don’t get easily upset if they forget some important aspect of your life because they have thousand other patients to see. Plus, they may be tired from being up all night on call or simply forget because they are human too. Remind them gently if it is important otherwise let it go.

In order to forge a long lasting meaningful relationship with your physicians. Remember respect and take responsibility. Don’t come in the first visit too strong knowing everything and demanding things. This will surely break a relationship before it begins. Your knowledge is a great asset as you build the relationship but your knowledge and high expectations on the first visit is like showing a possible new mate all of your flaws on the first date. What do think are the chances of having a second date?

Finally, as I said before never have more than three complaints at a time otherwise it will diminish the effectiveness of your visit. Do assume responsibility and ask for more frequent appointments to have your problems answered. As any relationship it is a give and take and the longer it last the more familiar the doctor will be with you and be able to ask for your input more and acquiesce to your needs and give you freedom to ask reason when they seem frustrated (which the majority of time is not related to you but rather a feeling of inadequacy on our part).

Happy trailing and pass it on for better long term patient- doctor relations everywhere.

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.

May 19

In Search of the Right Pair of Shoes: By Maria De Leon

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Those of you who have been following my blogs for a while and have read my “Parkinson’s Diva,” book will know how much I love a good pair of shoes. Shoes are an extension of ourselves; they speak of our style and who we are without having to utter a single word. plus just as a well tailored outfit makes a woman so do a beautiful well fitted pair of shoes can make a woman feel special, elegant, and capable of conquering the world even if she does not much wealth. thus, I am always in search of the right pair of shoes that will empower me for whatever situation I am facing at the moment that will complement my attitude style and of course my ever present red lipstick.

Shoes have always been a passion of mine with so many styles and colors to choose from I could go crazy. However, when I began experiencing lower limb dystonia and the pain became more intractable, the first thing I did was rid my closet of all my favorite shoes which I believed were contributing to my pain. I was forced to wear orthopedic shoes which made me feel so self conscious and worst these did not help alleviate my pain. I missed wearing my stylish shoes and especially my heels which I was accustomed to wearing since I was a teenager. Then came the disequilibrium followed by frequent falling which led to even more trouble after I herniated a lumbar disc. there was no way I could wear my 3 inch stiletto heels any longer. But I was determine that Parkinson’s was not going to dictate how I dressed or what I wore on my feet which made me feel uniquely feminine just the same. So I started my long search for ‘cute,’ comfortable yet ‘stylish’ shoes. Although, over the years I have acquired a new collection of attractive shoes which have also provided me with the support I needed, I always felt that the range of styles had been dramatically decreased just because I had certain limitations. this meant sacrificing some of the color I love as well as variety of style.

Now, as I have begun to expand my horizons once more I felt I needed something more akin to my style. so for weeks I have been in search of the perfect pair of shoes which could accompany me in all my travels as I lecture around the country. It is always hard to find something elegant yet with a simplistic attractiveness that would give me the confidence required to do my job while maintaining my equilibrium and not causing pain.

After much probing through various sites, I hit the jack pot! I was simply ecstatic. I had finally found beautiful, colorful comfortable shoes that were not too high less than 2 inches most in wedges, kitten keels, sling backs, peep toe, and flats. I was in heaven. only problem is that they are pricy and no longer having a doctor’s salary these are beyond my budget. http://www.beautiFeel.com Even the name of the company was perfect and seemed to suit me. However, I quickly formulated a plan, with the assistance of my fashionista friend in crime who is equally gaga for beautiful shoes. I would invest in THE ONE Perfect pair that would accompany in all my travails. Meanwhile, I am dreaming of a wedge, sling back peep toe shoe with black and white stripes similar to Kate Spade designer shoes with a small red flower on top ..

A Parkinson’s diva can dream as it is the shoes that allow a woman to conquer the world.. and some day I will again despite this Parkinson’s disease!

Meantime I have redecorated my guest bathroom with paintings of stiletto heels and powerful messages that inspire me to keep going in this race.

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.

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!

Nov 08

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!

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.