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!

Kitchen Goddess No More! By Maria De Leon

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At some point you just have to let go of what you thought should happen and live in what is happening.”- unknown

Do you guys remember the Enjoli perfume commercial? I was always inspired by that commercial because I thought I could do everything- just like her “I could bring home the bacon fry it up in the pan – work till five o’clock and never let my (husband) forget he was a man!”

Where do we get these silly ideas that we could be all things to everyone and do everything well no less? At least before PD, I had a chance of making it work -cooking, cleaning, taking care of family, home, husband and maintain a full job but now as my illness advances I find it increasingly difficult to do one of these tasks well before being completely worn out!

Let’s face it being a kitchen goddess was never my forte- except for a brief moment in time after my PD struck and I was stuck at home I began experimenting with food and dishes and suddenly my family was enjoying my savory food for the first time which made me believe I could do this forever…what was I thinking?

I am no Maria Croker …I discovered this recently as I have begun to have difficulty even with minor things like washing dishes. The once unused dishwasher, which was installed in my kitchen for sole purpose of increasing value of our home, should we need to sell it, has suddenly become extremely appealing. although, I completely recent the fact that I have to rely on a machine to make my dishes sparkle as I was once able to do on my own. But now even after washing dishes three times I find much to my chagrin that they are not entirely clean which only makes me want to scream.

I was consoled by the fact that at least I could for my family that is until I had my nephew and mother over for the summer and they prepared such exquisite gourmet foods that after they left, my first meal of the season was met with less than a stellar review…my husband was gagging and my daughter’s only words were when is my cousin coming back? Needless to say my ‘chewy meat with peas’ is not something we will be having again!

So I have decided to share my kitchen and kitchen goddess title with whom ever is willing to cook …and is not stressed by the process as much as I am.  I will be happy to claim the title of Diva and cook only on special occasions when I am feeling well and I can pour all the love into the food! For I have discovered that in order to be a great chef you must have passion and love for the art of cooking otherwise the meal will simply not taste good..

But no matter who the cook in the house is, I like for my daughter’s memories to always include an image of family around the kitchen, a simmering pot on the stove and me. Kitchen goddess or not – even in the midst of PD my kitchen will always be the heart and meeting place of our home where great stories are told, food is shared, bonds are forged, laughter and dancing takes place, and lasting memories are made.

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

10 Tips for a Divalicious Easily Accesible Kitchen for Every Parkinson’s Person: By Maria De Leon

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I kiss better than I cook.”~ Suzy Toronto

In my recently published book “Parkinson’s Diva: A woman’s Guide to Parkinson’s Disease,” I outline some strategies to make life easier while working in the kitchen for those of us who have chronic illnesses like PD.

We all experience ‘good days and bad days’ as my patients used to tell me. However, things can get down right tricky if you are the one not feeling well and everyone is looking at you for nourishment. There you are listless, barely able to control your tremors, dystonia, dyskenisias, tears, or whatever else Parkinson’s has in store for you that day. Now, you are supposed to do what? COOK! But, You can’t even bend down to get the right utensils or make it to the kitchen area.

So here are 10 strategies to make your life easier while making your kitchen functional and accessible without losing its charm.

  • First, get rid of breakable dishes. Get plastic or durable-non-breakable dishes

You do not have to sacrifice style for practicality. Make sure that these dishes are both microwavable safe and dish washer safe. I have nearly replaced all my day to day dishware and cooking sets because got tired of flinging things around and spending more time cleaning then cooking!

  • Second, make sure every one has special devices or gadgets to open jars, cans, and bottles as well as easily grip things. Get both that help with grip and also give you leverage to make turning easier. There are many grippers you can purchase cheaply. QVC had some nice practical ones that where also whimsical and came in variety of colors. Mine is polka doted blue! You might even want to mount one on the wall that allows for single hand use- However, have to consider position. Must be at waist level and near the edge of a wall so you can reach easily especially if using a wheelchair, scooter, or walker.Kuhn-Rikon Polka Dot Ultimate Auto-Attach Can Opener - K34857

Kuhn Rikon Polka Dot 5-1 Jar Opener - K38502

  •  Third, think about  de-cluttering your kitchen space. Remove any non essential materials from counter tops as well as removing any furniture that is obstructing easy passage to and from kitchen area as well as around the kitchen to make maneuvering easier especially if using walking assisting devices or wheelchairs. Get rid of carpets which might cause you to trip. If possible get tile floors that have a little bit of shine for easy gliding but do not make them too sleek because I don’t want you falling. Also, make a design in the pathway to kitchen and around your work area that will visually stimulate your gait and avoid freezing. Do stripes, or checkers, or color gradation, and mark door ways with a clear transition by placing strips of different color and/ or material to prevent freezing as you transition from one room to another. I personally love natural wood floors.you can make beautiful designs with these as well. plus they are easier to traffic with walkers and canes. same can be done with other type of stones. You don’t have to break the bank in making these changes to your home and kitchen since there are now use expensive  many less expensive materials to choose from like natural wood imitations that are just as beautiful. these alternatives could prove not just better for our pockets but easier to maintain. By using simple techniques or making small changes  you dont only have a more functional, disease friendly space but also give your living space an air of elegance, sophistication and spaciousness. But, remember to keep your paths goal oriented as the one in the picture below leading to television, bathroom, bedroom ( use in most trafficked areas to avoid falls and other gait impediments).

 

  •  Fourth, once you have removed unwanted and unused objects from around the kitchen floors, cabinets and counter tops your newly decluttered  kitchen area is guaranteed to make your life simpler. However, because all of us who have Parkinson’s disease and other physical disabilities have trouble bending and climbing due to the vertigo, dizziness, unsteadiness, along with stiffness caused by our disease we must be able to easily access our non-breakable cooking dishes, our condiments and other essentials for cooking. Therefore, we need to organize our working space as well as our cabinets so that everything we need is at eye and waist level; thus avoiding getting stuck on the ground or falling of a step stool. (I have all my condiments in a pull out drawer next to my stove). Also consider replacing all or a big portion of your cabinets with pull out shelves with dividers. This way you can see what you have and can store everything easily. I much prefer this to rotating shelves because those tend to get stuck plus are usually very small which reduces your storing capacity but also may make getting things out harder due to our loss of dexterity and fine motor control. On the other hand, the pull out shelves can be customized for what you need. they come in many sizes or shapes prefabricated or a good carpenter can install and customize further to your needs and specifications. I had this type of shelving installed in my office due to my chronic back problems. But, as my PD has progressed I am now implementing in my own home, since i have found myself storing all my cooking pots and pans along with other bowls and utensils in the middle shelves making it harder to get at without dropping and breaking things.
  • Fifth, once you re make your kitchen floors, install right shelving, get appropriate dishes but cooking is still a challenge because you have a hard time standing to cook due to pain, leg cramps, weakness, and off balance issues. In order to bypass some of these issues consider getting a chair to use while cooking, especially if you are like me and have a stove top on an island (which I highly recommend gives you more room to maneuver). This should be something light that is easily moved and folded to be out of the way. The chair or stool should have arm rest and a back to make sitting and getting up easier. This will help to minimize fatigue while cooking as well as avoid falling especially if using canes and walkers because hard to cook while holding on to these..
  • Sixth, I recommend a refrigerator with two doors. This way you can put things at eye level and not have to bend or simply may need to reorganize the shelving there as well.
  • Seven, I find that I now have a hard time washing dishes- the scrubbing is not always as precise as I would like it to be. Therefore, a dishwasher may come in handy but make sure your dishes are safe to place there and that they FIT! ( as I discovered one Thanksgiving Day that my beautiful hand painted dishes would have to be done by hand because too big to fit into dishwasher). The realization took the glee right out of me of having had the pleasure of serving my guests in this fine china!
  •  Eighth, make sure that your sink has an extension hose making it easier to access the water and rinse dishes etc. especially if you have limited mobility and use walker, motorized vehicle and the like.
  •  Ninth, get a nice food processor and/ or blender to expedite things in the kitchen and help you chop, grate, and liquefy foods without causing injury to yourself. they also make boards which have a way of tethering it to the counter top as well as keeping whatever it is your cutting in place to to avoid cutting yourself, spilling things all over the counter and floor due to tremors and dystonia.
  •  Tenth, Don’t sweat the small stuff! Every Diva has to know her limitations. if cooking is NOT your thing or maneuvering around the kitchen proves to be nearly impossible consider alternatives- of course there is ALWAYS take -out! But, this can get tiresome and expensive. You can still prepare a home cooked meal and be the QUEEN of the castle without much work. I highly recommend every woman, person with PD or other chronic illness should own a nice crock pot! Mine of course is red!!!But along with this you must have at least one good cooking recipe book for crock pot. There are many out there. However, I especially love the collection by Debbie Thornton.

Any Blonde Can Cook

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