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

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

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

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

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

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

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

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

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

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

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

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

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.