Category Archives: health and PD

Women & Parkinson’s Initiative: An Introduction : By Maria De Leon

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Last week, I was extremely fortunate to attend a first of its kind conference “Women & PD Initiative” to address the unmet needs of all of us women who live with PD.  All of the presenters were absolutely fabulous but most impressive were the participants with whom I got an opportunity to interact. Each one of them a true inspiration. Although they came from all walks of life, each in her own way had already taken the bricks that were thrown at them by this progressive incurable neurological illness and decided to make a fort for themselves and others. Though they were writers, activists, health professionals, business administrators, social workers, artists, lawyers, and so much more each were empowered by their own disease in a way they all knew, as I do, that life is too short to walk defeated. Rather than focus on the broken pieces, we all chose to focus on what it is we can STILL do with those broken pieces and rewrite our own story.

For two days, we listened attentively to the entire impressive line -up of speakers put together by PDF and the steering committee.

Among the speakers were Dr. A Willis- who brought to light the many disparities that still exist within our communities between men and women starting with delayed onset of diagnosis for those of us who are women which also includes delayed treatment by a MDS or even neurologists. Sadly, even when women do finally get seen by a specialist they often do not receive standard of care- meaning often times they are not offered DBS (deep brain stimulation) as a treatment option. Dr. S. Silver- made us laugh and redefine the way we view our own sexual roles within our relationships. She stressed the importance of having time alone as a couple and that even a hug can have sexual significance. This is extremely important as I wrote in my book the “Parkinson’s Diva,” men and women secrete different amounts of the same hormones which makes us perceive the world differently. One of these hormones is oxytocin which is crucial in bonding and intimacy. This particular hormone is release after sexual intercourse in abundance in men perhaps the reason why they always seek this activity to form a bond with us women however smaller amounts are also secreted by simple hugging. The longer and more frequent you hug the greater the bonding! (There you have it ladies- hug your man as often as you can).

Then we had a stretching work out with the lovely and energetic Dr. B. Farley who taught is that the key is stretch your muscles daily!!! As well as routine exercise even if it’s just 10 minutes a day. However, from studies done on memory and Alzheimer’s it has been shown that exercising in the form of walking 30 minutes a day three times a week can delay onset of memory loss/dementia especially in women and improve depression so what are we waiting for let’s get moving!!!

Diane Cook reminded us that self- efficacy is a powerful force and we all can learn to exert a more positive affect on one’s one life through positive thinking and positive reinforcement. When negative thoughts intrude don’t dwell on them say STOP! And replace with positive attitude- as Diane so eloquently illustrated her point bringing to mind the popular children’s story of “The Little Engine that Could” and so can you.

So now that we left invigorated it is time to become Women & PD Initiative:

Advocates- To walk along other women with PD in their journey. Help to smooth ruffled feathers in their new unfamiliar world and understand how to navigate that world.

Role Models- to help find a new empowered new way of going about life with PD full of hope, spirituality, knowing how to use her own skills to deal with stressful situations, depression, interpersonal, personal relationships as well as help to teach her how to become a self-advocate and advocate for other PD women.

Good listeners-not just hear the words of those we share the journey with but understand their body language.

Resource persons-help other PD women develop a network of resources, and support to help them in their journey with PD to self- sufficiency and self- empowerment. Help to identify needs in the women with PD lives and develop action plans together to meet those needs.

Let our work help other Parkinson’s women around the globe find their own strength and summon their inner diva to rewrite their own stories as well!

Getting ready for the fall- the PD diva way: by Maria De Leon

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“Summer is almost over but another one is just around the corner.” unknown

Labor Day Weekend always marks the end of the summer for me as for most as kids return to their studies. Although, officially we still have a couple of weeks left to enjoy the extended daylight, the carefree days of summer seem to abruptly come to an end once this holiday arrives.  Although, I secretly anticipate the return of summer, I have learned to embrace each season for their own beauty. As I begin pulling out all the decorations for the fall, I feel an excitement mounting once more for new opportunity to display the wonderful array of colors that fall has to offer from its deepest red to its darkest yellows. I realize that just as in life we must embrace every opportunity as it comes – just as a year unfolds so do our lives. We have seasons of rest, pruning, and times of great productivity. But within each season of our life there is beauty to behold; no period is less important or beautiful than any other.

The arrival of autumn is more satisfying to me with each passing year as it mimics my  life with PD. Autumn like Parkinson’s has the ability to draw from a wide spectrum of brilliant colors painting the panorama with an impressive display of colors which summer will never see. As I near the end of summer in my own life, living with PD I am discovering a new range of talents never once displayed along with a burst of creativity I never knew I possessed until it was ready to be harvested.

Despite the fact that it takes me longer and requires more effort on my part, at least a lot more dopamine plus a few chocolates here and there, just to be able to take things out from storage and begin preparing the home for its seasonal-fall make over, I would not change a thing. there’s nothing like the aroma of cinnamon pumpkin, sweet candy apple, and candy corn intermingled to liven my spirit…crisp apple soaps to awaken the senses of even the sleepiest of us all. I absolutely love the lingering aroma of fresh citrus fruits on my hands all day especially since I constantly wash my hands.

This is the season, I particularly look forward to visiting my favorite store – Bath & Body works! I enjoy walking into the store to find new novelties and even though my smell is not what it used to be the combination of aromas always stimulates my olfactory nerves so that I feel almost normal.

Its no wonder that my daughter’s friends as well as my family love visiting my home..as one of my daughter’s friends put it so clearly..” I just love the smell of your house especially your soaps!”

This comment of course swelled up my chest with a great sense of pride since as you know we all have good days and bad days and sometimes domestic diva goes on vacation for a day or three! Nice to know that my home is still inviting despite my shortcomings. The candles and soaps provide wonderful soothing aroma therapy to help relax anyone but especially us Parkinson’s patients and relieve anxiety due to stress.

The best thing of the season, however, is the glee in my daughters eyes when I get done with all the decorating..a lot of which came from my favorite store in the form of unique little Halloween houses, Pumpkin soaps, and owl night lights.

Plus, you can choose from a wide range of seasonal easy to carry hand sanitizers which aside from smelling terrific are fun, a good conversation piece, great little gifts, and a must have for any woman especially for those of us who are already predisposed to other illnesses and experience worsening of our PD symptoms with any cold or flu. Prevention is still the key to a healthier living as the season gets rolling and flu season draws near. But with one stop shop you can relax, distress, improve your senses and prevent spreading of viruses! Wow, you are now on your way to embracing the fall season the PD Diva way!

Why Parkinson’s Diva? By Maria De Leon

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The term “DIVA” is meant to inspire women of all walks of life whether they have PD or not, to live up to my favorite definition of the word…

That is to say ‘doing something supernatural with something natural.’

We all have unique talents and gifts many of which will blossom under adversity as the rarest flower – in this case battling with PD.

Once in a while an even rarer occurrence will take place – the expression of something innate within which was never seen before like suddenly becoming a great artist when you did not even know how to hold a paint brush ..

It is laughing hard and out loud despite PD!

It is having a GRAND love affair with life!

In order to beat PD we have to think BIG-

BIG Thoughts of mercy, kindness, love and forgiveness

BIG Dreams ‘to be the change you want to see in the world’ for a better tomorrow for your children and loved ones

BIG Smile which makes others want to smile as well

BIG Movements with arms outstretched ready to Give and help others!

We also have to be LOUD

LOUD to have our small voices be heard over the deafening and roaring sound of the world which is constantly trying to engulf us.

LOUD praising of GOD which sustains us through this perilous journey

LOUD singing to drown our sorrows and bring forth Joy

LOUD laughter which gives courage to others to do the same

Become A Warrior Princess & Conquer PD: By Maria De Leon

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“To find beauty we must carry it with us.”

~ Ralph Waldo Emerson

We live in an era where beauty unfortunately has become a treatment. Today, the most beautiful of women feel the need to be processed via chemical peels, botox, facials, depilatory treatments, exercise regimens all in the name of beauty. Even Queen Esther a beautiful woman, the Bible states, was sent for a make- over before she could meet her King!

In an age where we can find pants that claim to help us lose weight and mold our legs and rid of cellulite just by wearing them, to vitamins, herbs, dietary supplements that claim to rejuvenate our skin, mind and body. No wonder some of us may feel overwhelmed trying to keep up with all the fads and trends. But, at what cost? Should we continue to allow others to pass judgment on whether we meet someone else’s standard of beauty?

it is tough enough being a woman without having to live in another woman’s (person) shadow.

What about inner beauty? Does this not count for something?

I know we all want to be attractive to fit in, to be accepted because unfortunately in society We are often treated as we are perceived. Never is this more apparent that in those of us suffering from chronic Neurodegenerative illnesses like Parkinson’s which gravely affect our outward appearance. Yet, although as a Parkinson’s Diva who believes that dressing well, smiling, and looking good can empower us to fulfill the roles we have been predestined to play- external beauty should NOT ever become our priority.

Fortunately, in Gods realm beauty is neither a treatment nor something we have to spend thousands of dollars trying to achieve.

There are much greater gifts that lie within the beautiful Trojan horse. Don’t be fooled by the exterior. Although, the horse was beautiful it was what lay inside of it that gave it its value and power. Likewise, we as Parkinson’s women find that the real beauty God has granted us comes from within. One’s inner beauty sparkles best when we show compassion, integrity, intelligence, perseverance, patience, love, and kindness towards others. These are the things that make us strong and able to conquer whatever challenges PD throws our way.

“Don’t [ever] let anyone dull your [inner] SPARKLE!”….. S. Toronto

No matter what you lose in life or PD takes away, it can never strip your inner beauty – this is the real army laying dormant inside waiting to charge at a moments notice when the crucial time arises.

Even though beauty can start off as skin deep,it can serve to let us in the gates of the enemy- the walls surrounding PD which many times keep us isolated from others; it also serves to empower us to unlock the true beauty which flows from deep inside our souls and become PD warrior princesses!

BE YOUR OWN KIND OF BEAUTIFUL …After all ” we are fearfully and wonderfully made! ” Psalm 139:14

10 Things Every PD Woman Should Have: By Maria De Leon

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“Something perfect to wear if the man of your dreams wants to see you in an hour.”

1) A nice silk night gown or pajamas to help you feel feminine, cool and also make sliding and moving in bed a lot easier when you wear off or get rigid.

2) A nice pair of red flats or any peep toed flats of your favorite color that can be worn at fancy occasions or any season to provide a pop of color which can be dressed up or down. Easy to put on when stiff or dyskinetic. But, make sure soles are slippery if have tendency to freeze to avoid falling. Payge Peep-Toe Flats

3) A little black dress/ black well fitted suit – this will be your to go outfit when going out on the town with the love of your life or when facing congress trying to change the world.

4) A Statement necklace- long of course so won’t have to fiddle with clasps- could be a set of pearls or bold gold necklace -something to make a statement and make you feel feminine. Add a touch of class to any occasion and is season- less.

5) A favorite lipstick -one that you can always go to that will make you feel confident and feminine. One that by itself can give you strength to conquer the world. 

6) A print copy of your favorite book by your night stand. One that will always inspire you to continue the journey even when the days seem gloomy.

7)  A favorite scent that is uniquely yours! When I was in medical school I wore “passion”  all the time. It is funny how a scent can define or identify a person. One day in class when studying the brain, we touched upon the olfactory nerve (one that helps us smell) while the Professor flashed a picture of a bottle of PASSION on the screen, to my amusement and amazement in unison most of the class shouted ” Maria!” Upon seeing the picture up on the overhead.We all had a big laugh. It was there that I discovered the power a fragrance can have even subconsciously. I like one that not only smells good and brings your best attributes but the name itself is empowering – it helps if it is visually beautiful or appealing as well! But, that’ s just me!

8) A Hand sanitizer in your purse- it helps protect you from all the germs around and helps prevent spread of germs as well. I like bath and body brands not only do they have great fragrances but come in stylish bottles for every occasion.

9) A sturdy piece of luggage to pack your medications and essentials at a moments notice should the opportunity arises to get away for a weekend or longer.

10) Most important, every woman should always have an idea of who she wants to be and accomplish along with a plan B just in case this PD throws another curve ball…

@copy right 2015

all rights reserved by Maria De Leon

A day in the Life with PD: by Maria De Leon

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10526144_743459779045084_7301643744003029952_n“Imperfection is beauty, madness is genius and it’s better to be absolutely ridiculous than absolutely boring.” – Marilyn Monroe

Ever since I was a young girl, I have always enjoyed modeling and getting all jazzed up. Often putting on run way shows and singing extravaganzas in my grandfather’s backyard for the entire neighborhood. But, as a busy solo neurologist on the go on call 24/7 unless out-of-town, I relished those few and rare moments where I could play dress up.

One thing I discovered over the years while purchasing clothes particularly dresses is making sure that you ALWAYS try them on before purchasing. Because even if it’s your size it may not move with you as you like for the occasion in mind. Be sure to try the dress in various positions. As I learned the hard way. I bought this gorgeous sateen empire waist low-cut teal dress which fit in all the right places …extremely elegant and sexy. Well, the day came when I was ready to wear my priced possession and show it off at a friend’s wedding, I suddenly discovered that this magnificent dress only fit me perfectly as long as I stood upright. However, if I sat down the front of the dress would suddenly become extremely lax and would open wide exposing the girls to the world unless I sat with my back completely arched and head tilted to the side as if posing for a calendar photo shoot….not having brought any other wrap ..this was the way I had to sit throughout the entire wedding ceremony.

Feeling all eyes on me instead of the event at hand, I had to concentrate on maintaining my posture rather than focusing my attention on the beautiful wedding in the most serene, picturesque outdoor scenery surrounded by lakes and huge 100-year-old trees. Needless to say that by the time the ceremony concluded I had such a crick in my back and neck.

So, the other day when I was asked to do a photo shoot for a magazine I was reminded of that day in the woods and I had to laugh.  I was not sure I could sit immobile in a certain position for hours once more now that my Parkinson’s has advanced. But, I thought surely they will only come and take a couple of pictures – no big deal. I figured one or two clicks and done. I never expected an entire production. When the crew arrived and started unloading cameras, lights, suit cases, and other equipment which filled up most of my living room. I knew I was in for a once in a life time experience.

My mother -in- law had fixed my hair but with all the perspiration that comes along with PD compounded by that day’s humidity and nervous anticipation, my hair curled back up to its usual frizzy state in less than 5 minutes. Although, I had carefully prepared my clothes the night before, that day I must have changed 5 times at least. Finally, settling on the right outfit and accessories a minute before the crew arrived. the rushing along with frustration of not being able to move quickly caused me to sweat even more despite having the room in the low 60’s. anyone who would have witnessed the down pour would have assumed I was menopausal especially since I had a patch on (neupro). I guess I will have to move to the north-east when this happens. Despite the perspiration and rushing, I was proud of my choice and felt I had done a good job with selection, apparently I was the only one that felt this way. After my make up was done I was asked to show them my closet so they could pick out my clothes. After several selections the RIGHT outfit was identified! I was ready for a nap and we had not even taken a single picture! No other choice but to up my medications to keep up.

I thought I knew how to apply make up, apparently I have been doing it all wrong! The key to good make up application is to make it look natural and last all day. I was amazed how wonderfully smooth and soft my face felt all day long. Moreover my lipstick did not feel like a cake on my lips yet never once peeled off or smeared on my cup (which I hate!).  I have  decided it takes great deal of skill to be a good makeup artist one which I don’t fully possess.

All throughout the photo session the team of photographers kept asking for makeup touch up and hair  touch-up which tickled me to death. After 3 hours of continuous photo taking in various rooms of the house and many poses, I was ready for a nap.

I felt like I should start my own portfolio for a new modeling career after 4 hour photo shoot session!

As I was drifting to sleep with my thoughts still racing from  exhilaration of the days activities, I thought how ironic had it not been for PD I never would have had such a wonderful, fun-filled day!

I slept like a baby that night. Who knew the secret to a good night’s sleep with PD was having your picture taken?