The Road to Capitol Hill: By Maria De Leon

The count down to PD forum has begun and I have begun to feel a stir in my belly for the chance to meet with members of congress to discuss salient matters regarding the needs of all people with Parkinson’s. (on the side perhaps catch a cherry tree blossoming)

Who would have thought that one summer internship, as a high school student learning the ways of the state legislature, role playing a congressional woman would be of great benefit lo this many years later? Since that time, I have had to rely and recall my experiences in law making as I have become an active advocate for Parkinson’s disease and neurological issues in general at Capitol Hill. I am well known in the office of my State Representative Louie Ghomert  due to my many letters and phone calls. Plus, I have had the pleasure of meeting him in my home town once or twice. I still remember with fondness meeting Tip O’Neill Speaker of the House back when I was just a freshmen at college. I have also had the pleasure of serving as Assistant State Representative  for Texas for Parkinson’s Action Network for a number of years, now merged with MJFox. As Fox volunteer, I continue to serve in that function and looking forward to my upcoming trip.

Long before I was a neurologist or PD patient, I was already an activist of human rights and patient’s advocate. I am just glad that I now get to have a stronger voice and hopefully greater influence than in my youth as to the well- being of those with chronic neurological diseases particularly Parkinson’s disease.

We all have a long list of issues we would like to see addressed and changed in order to better the quality of life of those living with and caring for people with PD.

One of my biggest frustrations and dissapointments in caring and treating patients with PD is the lack of access to neurologists followed by restrictions/ limitations in access to medications neeeded. This last point, in my opinion, is the cause why so many with PD do so poorly. There are many states in the U.S. devoid of neurologists much less movement disorder specialists. One of the things, I would like congress to address is the expansion of teleneurology along with passing a law which allows patients to receive the treatment deemed necessary by their treating physicians not a third party who knows nothing of medicine!

Since 1999, Telemedicine has been used for evaluating and diagnosing acute strokes with moderate success across the country; yet despite its many benefits it is still NOT universally used.  (which by the way as an intern at UT -Houston working in the stroke unit I was involved with the inception of this technological way of evaluating remote stroke patients as well as in the stroke scale development). Of course teleradiology (extremely familiar with thanks to my husband’s profession)  has been in practice for years with great success but still with limitations due to credentialing issues across state lines.

However, in regards to this much debated subject the tide maybe beginning to turn as some who have been on the fence regarding this issue  are slowly conceiding its potential benefits. although much work still remains to be done regarding the rules of credentialing, liscencing, liability, and above all reimbursement which is fair to physicians. Nevertheless, 29 states have already passed laws requiering private insurances to pay for telemedicine delivered services same as they would for in patient care.

But, since the majority of neurological patients especially those with chronic disabilities /illnesses are primarily Medicare recipients, the federal government remains the biggest barrier to its implementation. The government has always had back wards thinking when it comes to the rules of medicine …they pay for nursing homes but won’t pay to prevent patients from getting services, treatments and medications to avoid worsening of symptoms or becoming recluse while becoming a burden of  the state and family. they refuse vital ancillary services like PT, OT, ST but instead they are willing to pay thousands more for a hip replacement which many times in the case of PD patients signifies the beginning of the end. yet, they won’t pay for the medications needed to keep these same people from freezing which cause the falls to begin with or the therapy to keep mobile. Rather than valuing the individual care of those suffering with chronic neurodegenerative disease like Parkinson’s to improve their quality of life, and increase  or continue to benefit from their contribution to society  thus diminishing the burden on society and families; currently, Medicare pays nothing for having a physician care for them remotely via telemedicine but rewards those that visit hospital/ university based clinics as well as costly hospitalizations.This type of care serves only to polorize and increase the disparity between urban and rural as well as solvent and financially needy individuals. It’s no wonder we have few or no specialists in rural communities where the majority of patients reside when the physicians time is not deemed as valuable as one practicing in urban setting.

What about thinking about our patients first ? We could unburden some of our caregivers by reducing their drive time and frequent visits to specialists for instance. What about unburdening the care partners by making patients self sufficient and independent because they are on the correct doses of the appropriate medicines not the one the insurance or government thinks we should take because it is cheaper.

An example, I like many of you am a walking pharmacy. As all of you who live with a chronic illness know that a single change can throw a wrench in the whole well oiled machine causing the whole system to come to a complete hault. This is because not only are we experiencing all the systemic effects of our illness but also deal with the myriad of drug to drug interactions thus finding a balance the more meds we take is a true art. Now when everything is fine tuned, you can breath and go about your life without having to give too much thought to the ever present PD. But what happens when every time you go to the pharmacy to get a refill you have to fight to get your meds? not only is this  extremely stressful but worse if suddenly “the insurance” or “Medicare” decide that it’s too expensive and you don’t need this medication but rather something ‘similar’ because its cheaper. They are essentially saying we don’t care about you as an individual, your illness, nor do we care if you fall, get psychotic, or end up dyskenetic or hospitalized all of which will cost insurance 10x more; never mind the emotional and financial anguish incurred by patient and family of patient as long as they same a buck on the front end. either take what they give you and suffer above consequences or like me many times end up paying a heavy price to keep my health in check and out of hospital. there has got to be a better way.

What I am hoping is that some day people with chronic neurological illnesses like Parkinson’s can have better access to providers and the medications they need. Only then can there really be a true improvement and advance in the care of people with PD. What I am also hoping is that someday I can work side by side other great public policy makers like my friend Ted Thompson (Senior Vice-President of Public Policy for MJfox Foundation) as a Public Policy maker myself doing Public Health fellowship through Neurology once my daughter has left home.

So although sometimes our roads take many unforeseen detours, in the end its the passion within our souls which fuel our destinies allowing us to arrive at the exact destination at just the right time  for the greater good of others. I guess despite PD, I remain a dreamer…after all it is the dreamers who posses the exorbitant imagination that underlies the power to change the world. I like Mr. Smith Goes to Washington intend to prove that one voice can make a difference. Now imagine what we can accomplish together!

Keep you guys posted on my travels and interactions at the hill. for those going see you there and for those not able to, I hope you feel you and your needs will be well represented. 

 

Dopamine Makes the World go Round!: By Maria De Leon

 

 

As we are getting ready to celebrate another Valentine’s day here in America and in other parts of the world, I began to think about this subject of love more intently.

When I was young, I loved watching and reading romance movies and novels. since I am an avid reader and consider myself a movie buff I have a special place for all Nicholas Sparks books especially ‘The Notebook’  and the ‘Best of Me’ as some of you  might also. Ironically, I was reading ‘The Choice’ when I was first diagnosed with Parkinson’s and was having to do a lot of soul searching myself to find out what was best for my life.

However, nothing compares to the old classics like Pride and Prejudice  and Wuthering Heights. I dreamt of finding my own Darcy or Heath Cliff. But, interestingly at the same time as my symptoms of Parkinson’s began to surface I began to drift away from romance and switch my attention to mysteries and crime solving stories which had a much more satisfying ending than riding into the sunset-living happily ever after. I assume this was just a matter of growing older, becoming more centered on reality than fantasy and maturing as a woman.

So, I stopped reading romance novels and began a love affair with a crime solving duo-written by famous author Tess Gerritsen, a medical colleague whom I had the pleasure of meeting in person several years ago at Cape Cod when I first decided to begin my own writing career. But, my once avid interest in literature and ability to devour books in one sitting began to slowly wane without me knowing until my daughter pointed it out. This was the time I realized I needed higher doses of dopamine in my system. Lo and behold, once I began taking Rytary, my passion for  reading returned with a vengeance. I began again reading 2-3 books a week.  But, still not much interest in movies or books with romantic themes.

Yet, as the years with PD grow in number so have my needs and doses of dopamine gradually increased in order to feel like myself mentally once more. Suddenly, with the latest increases in medications has come about a new sense of passion for life  including my love of romance books and movies, making me think that perhaps it was not all about getting older causing changes in my likes and dislikes of things; but rather waning levels of a little chemical known as dopamine.

We all know that feeling of being completely head over heels with someone and feeling on top of the world, unable to eat or sleep, yet having complete clarity of mind. This my friends is the natural effect of dopamine. It feels GREAT!

I once again, feel like that love stricken young woman of days of old unable to sleep, eat, but with a profound clarity of mind I thought gone forever from me. I even helped my daughter with algebraic equations the other night and it felt absolutely awesome.  although, dopamine is the final ingredient to our well being, it is love the greatest catalyst responsible for the release of this powerful endogenous substance.  Although, it is absolutely clear that my dopamine levels have increased medically over the last decade, the biggest change in my well being has been in the increase endogenous dopamine. Learning to love myself (yourself) has been the greatest love second only to letting God’s love define me.

We have all heard the old saying : “Love makes the world go round.” But, perhaps it’s the copious release of dopamine and its effects on our love stricken- brains that is the real culprit and mastermind no matter where it comes from- be it a pill, a piece of scrumptious dark chocolate, the voice of a loved, or being in the presence of God.

This Valentine’s Day let your endogenous dopamine have free run by spending some quality time with someone you love.

HAPPY VALENTINE’s DAY everyone…Image result for images of heart shaped balloons

 

New Year Resolutions! By Maria De Leon

First, let me take a moment to wish everyone a very happy and prosperous new year! I am sure that many of you as is customary made a list of New Year’s Resolutions which you wholeheartedly intended to keep. But, by now many of you like me find the resolve to keep those well –intended plans slowly begin to dwindle away as the month unfolds. Perhaps, some of you, like me, feel no need to go through the charade of making any determinations.

However, this year I would like to challenge you to develop a more proactive attitude towards achieving our goals in an effort to live a happier and fuller life no matter where we find ourselves.

Think of these as a new adventure which is going to enhance your life not cause stress or mental anguish.

Here are some examples of common resolutions people make:

I want to eat healthy and lose weight. We join exercise classes and begin to avoid all the stuff which has sugar, butter, and tastes good and replace with more incipient foods. Well, no wonder we abandon this in an instant when someone offers us a piece of moist chocolate cake, as my grandmother used to make every year around this time for my grandfather’s birthday.

Instead, let’s look at food not as our enemy but a way to connect to people, explore tastes, and discover new things. Is not what we eat but rather the quantity, I always say. Everything in moderation. Don’t eat half the cake, just a sliver or small slice. Trust me your taste buds will thank you, and don’t leave the butter out when cooking. Your brain needs fats in order to thrive. A recent, study published in magazine Neurology Today stated that people with a bit more meat in their bones later in life could potentially benefit more by protecting their brain’s against dementia. That does not mean you eat the whole tub of butter and let your diabetes get out of control but does not mean you don’t have to deprive yourself from rich foods. Eating fatty fish high in omega 3- fatty acids like salmon, sardines, and trout can be beneficial to the brain and help with memory. One of my favorite dishes and easy to prepare is salmon with mint in the oven served over rice. 

I want to stay fit or get in shape. It’s a lot easier to exercise routinely when you have a friend to do it with or better yet get a pet like a dog which you have to walk and you will exercise without trying to. Pets are not for you? How about ballroom dancing? I bet you will be the life of the party if you display some of your moves. Exercise also has been proven to prevent or at least truncate development of dementia with as little as 30 minutes a day of walking three times a week especially in women. The best way to maintain an exercise routine is finding something you love.

Another common resolution, I want to travel. Well, sometimes our health and/or our financial circumstances are not what we like making this dream a bit hard to achieve leaving us disheartened. Well, now you can have some of the advantages of traveling without leaving home. Invest in some virtual reality glasses (you can buy some at amazon for under $20) and feel like your there. Better yet, invite friends over and cook some foods indigenous to those areas that you like to visit. Better yet, if out are like me and don’t like to cook much then find a place to cater or do put luck and while you dine listen to the music of the region and even learn a few phrases. There are several little packages called “Music and Cuisine for Dinner with a Theme” which I have enjoyed using. These inexpensive treats which can be purchased on line or at Hallmark stores come with a authentic music cd of the region like Italy (several countries to choose from). They come with tips for throwing, in this case Italian – inspired soiree along with 20 plus recipes from appetizers to desserts for a whole meal experience which are easy to prepare. The experience will be just as memorable, I guarantee. Plus, you will also be learning something new another common resolution.

Self-improvement also makes top of list for New Year’s resolutions easily broken. If you concentrate on helping others and being kind to others, you will grow infinitely as a human being.

These basic changes in attitude and perspective are sure to be a hit with anyone who dares to be bold. Don’t forget to always smile and be thankful for the little things.

 

Reflections: By Maria De Leon

He who learns must suffer and Even in our sleep pain which cannot forget…falls drop by drop upon the heart until in our own despair against our will comes wisdom through …the awful (awesome) grace of God” -Aeschylus

As another year has whizzed on by, I am beginning to reflect on the year’s events particularly as so many of my Parkinson’s patients have gone to be with the Lord this year.

First, I am eternally grateful I had the opportunity to be part of the life of so many wonderful individuals and families who took me into their homes even after I stopped practicing. Particularly grateful I am to have shared this life’s journey with many Parkinson’s women who were also pillars in my community. Their faith and struggles with this chronic illness has served as a living testament to the grace of God in theirs, as well as in my life.

One such lovely lady, whom I had the pleasure of caring for; once asked her mother as a child if “God (Jesus) could come next year,” yes her mother replied. “Mom, could he come next month?” Yes, sweet child. “Could he come tomorrow? But, of course he can sweet girl. “Could he come today?” Yes, sweet child. “Then, mom could you hurry up and do my hair.”

As I learned of this story recently from the family member of my dear precious patient’s love for God, I was reminded of how that kind of love and enthusiasm is what this season is about. Even when she got PD later on in life she was always prepared and thankful sharing her love with others.

We should all strive to have such a spirit of gratitude every day of our lives not just during special seasons. I know it is hard to feel grateful or happy when tragedy strikes or when life does not go according to plan. But, one way to help us remember that adversities are not just a part of life but sometimes are meant to bring out the good in us. If we always went about our lives without a care or struggle, we would take things for granted as many of us did before we became ill. Imagine spending your whole life as an athlete training for a competition (a Race) that will never take place. Not only is it disheartening but most likely many of us would start slacking off. The biggest travesty would be to never know if we really had what it took to finish the goal.

Sometimes in order to bring the best to the surface we have to be sifted like wheat or dumped in hot water as a tea bag in order to reveal its (our) strength as Eleanor Roosevelt would say. This means that sometimes we must deal with adversity in our life’s which sometimes comes in the form of a chronic illness like Parkinson’s.

My patients have taught me that you have to take the good with the bad and make the best of it. Some of the saddest times in my life were also the most fulfilling and fruitful. For instance, when my father became ill with cancer and was ravaged by it, I spent countless hours agonizing over his care, his health, and coming to grip with the idea of losing him yet at same time I completed my book –Parkinson’s Diva – partially inspired by the loss of my dad and grandparents.

Looking back on my life, I find that almost every major decision has been guided by God. Even when I first was diagnosed with my illness and I was having trouble doing basic things for myself including driving, He was there looking out for me sending me my dear friend to help out. I was unable to get around even in my small community because I was so sleepy with the medications (Requip, Mirapex, and Sinemet) that I had become my own worst nightmare. In my mind I was checking yes to every box in the Epworth sleepiness scale – even chuckled in disbelief as I fell asleep at stop light and was startled by a loud honk behind me, once when I attempted to go down the street to the shopping center on my own. All I needed to complete the picture of narcoleptic was to fall asleep while eating and flop my head into my plate. Although, I was not far from this state; yet something inside propelled me to apply for a position as PPAC (People Parkinson’s Advisory Committee) for PDF (Parkinson’s Disease Foundation).

I was not sure what I would do if I got accepted since I could not go very far on my own or stay awake for more than an hour at a time for that matter. However, I knew it was in God’s hands. Sometimes in life we have to learn to navigate through life with faith and realize that our strength and our refuge come from above. I have had my share of disappointments, frustrations, and setbacks dealing with Parkinson’s among other illnesses; yet all I have to do is remember how far I have come, how despite the doctor’s predictions, I am still here when I was given 6 months to live 8 years ago.women

Thus, this year I am grateful for all the wonderful people I have met along the way, the stories we have shared, the battle wounds we have bound together. Plus, having shared an unexpected journey with you my readers has given me not only tremendous joy and happiness but also afforded me greater insight and compassion to the needs of those who like me are living with this terrible disease. As a neurologist, I have gained a wider perspective in life as well-that no matter how bad we think we have it, there are always worst illnesses to have and maladies to endure.

So in the end, as any doctor would tell you, in order to properly bind a wound a patient must first allow himself to stay(sit) still and allow someone else to be in control to fix the brokenness of a bone, etc.

As the year draws near, I have security and hope knowing that God has been with me in the darkest as well as in the brightest days. He alone can heal and can lift us up when we feel we have no more strength to go.

Perhaps it would be wise to start the holiday season and New Year with the thought that- life is simply too short and precious to live miserable, unhappy, and complaining about something we have no control of…

Remember, it is the natural order of things to change- there will always be losses and gains.

However, because we do have a say on how we choose to live our lives in the midst of adversity and Parkinson’s disease lets try to focus on the gains and not the losses. I choose wisdom that comes only from above ( after despair and sorrow have inundated our hearts) plus a bit of sparkle and bling. What will you choose today?

Never let your inner beauty die out. You are more than your disease.

(my Greek goddess sandals)

my-foot

As another author (Martha Beck), much more famous than I, would say, “have the courage to open up to life..” especially as we are about to start a New Year.

 

Happy Holidays from my house to yours!

 

 

Thanksgiving leads to True Happiness: by Maria De Leon

“In all things give thanks..” 1 Thessalonians 5:18

as the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of another wise ordinary life.

You may say, how can living with PD be ordinary? Living with PD Makes life more challenging for sure – as I sit here fiddling with my heart monitor , which I am to wear for the next month, because the battery light keeps going on and off interrupting my train of thought as I compose this blog.  different, yes- absolutely!; but not less ordinary than any other persons life who struggles with his or her own burdens.

is not my living with PD, being a doctor, a mom, a wife, a cancer survivor or having any extraordinary talents which makes my life so very special filling my heart with overwhelming gratitude towards my God, my family, and friends.  rather my gratitude and sense of fulfillment has come about by the challenges I have thus far overcome thanks to my God and the opportunities that have come my way for which I was never qualified yet was chosen to do.girls (few of the women I worked with)

One of the best examples of this was undertaking the task of teaching and working with a group of women over the last four months. I have lectured and taught for years in various settings but I have never been instructed to carry on a class for this length of time in a non medical subject.  Never had I been especifically called to teach and instruct women on ways to Become empowered as women, wives, daughters, mothers, and professionals to other women like me who are dealing with chronic neurological disease in their lives many at younger age than me or are caregivers to loved ones with dementia. Certainly, I felt at the time and still do that there are many other women who are much more qualified on the subject matter than myself. Yet, it was me who was asked to do this job when I walked in one day to make a donation to a women’s ministry.  My initial instinct of  trepidation was met by an inner voice  which said:” you can do this because I am with you.” Thank goodness I did not let my  fear of the unknown keep me away from one of the greatest privileges of developping, mentoring, and growing along side women who were facing similar challenges in their lives as many of us women who live with a progressive disease do. As they learned to conquer their fears of living life with a progressive debilitating illness and an uncertain future, they found support in one anther and realized that self – love is the beginning to a well-adjusted life even in the midst of adversity.

I have long realized through my career and personal life that the only way to grow and discover new things is to leave the safety of the shore. Because women have always been one of my passion’s especially those with neurological disease ; hence, the reason for putting ink to paper developing a woman’s mantra for living well with chronic disease –Parkinson’s Diva. With this philosophy in mind, I set out to learn how to become a better mentor and teacher to 12 beautiful women. What happened is that although my PD symptoms were giving me heck and my memory is atrocious due to amantadine, we still shot we still learned the fruits of the spirit in sign language.

As the last two weeks of class neared by, I wanted them to know how very special they were and how proud of their progress I was. So, I gave each one of them a tiara to remind them of their “diva-neess” and accomplishes thus far. I reminded them to put on their crown daily literally and figuratively especially when confronted with adversity or situations that may threaten to strip their power and confidence. I spoke of how important it is to always rise to the occasion no matter how impossible it seems because the reward will always be worth the sacrifice.

In the end, what we choose to do with our abilities and talents, as well as what we choose to focus our attention and energy on really determines our capacity to develop empathy for those around us. Subsequently allowing us to realize how very blessed we truly are. My chest swelled up with pride and humility, for having been given the opportunity to be a part of these women’s journey even if for a short time. As, I saw one of the women entering the stage to receive her diploma wearing a sparkling tiara, Suddenly, the nausea, shortness of  breath, leg restlessness, and back pain I was feeling dissipated watching her glow on stage. Thus, I gave thanks to God for allowing me this opportunity to witness this precious woman become empowered taking control of her destiny as a stroke “Diva” raising up to meet the challenges of living with her stroke at a young age while being a single mom.

Thus, I give thanks for the simple joy of making someone else’s life a bit better simply by being me – “Parkinson’s Diva”

My goal is as one of my favorite American writers and poet  R. Emerson would say:” ..to leave the world a bit better, whether by a healthy child, a garden patch..to know even that one life has breathed easier because {I} have lived… this my friends is what I am most thankful for this holiday season.

Happy Thanksgiving!

Parkinson’s & My Love for Fashion: By Maria De Leon

” Style is a way to say who you are without having to speak.” ~ Carolina Herrera

Image-“Red Shoes” by Ross Webb

 

As you all know I am a fashionista at heart and having PD initially put a damper on my love of shoes and actually diminished my collection because the initial foot dystonia and pain caused me so much discomfort that it was hard to work. In my profession as a neurologist, I had to stand and walk a lot. The burning, searing pain along with involuntary toe movements made it extremely difficult to wear some of my favorite shoes. Erroneously thinking it was the shoes I was wearing the culprits of my pain, I got rid of many pairs including some very cute and stylish red shoes which I absolutely loved. In my practice I was known as much for my shoes as I was for my hugs so having to change was a huge deal. Due to my severe discomfort, I was then forced to wear tennis shoes for the first time in my life which I absolutely abhorred but unfortunately it was the only thing I could stand on my feet.meshoes

Of course after my disease was confirmed, in the process of stabilizing my doses, it was difficult to walk with my stilettos and even chunky heels if they were higher than an inch. Because of initial poor balance and mild stooped posture wearing heels only served to shift my center of gravity forward causing severe back pain along with increased unbalance. However, even though there was a time of a year span in which I had to use a walker and barely able to lift my feet I never lost sight of being able to wear beautiful shoes again. Although, I did have to accommodate and find a new way of meshing the styles I love with the practicality and comfort required for someone who has PD. Fortunately, there are so many choices to choose from compared to even 20 years ago.

PD has not stopped me from loving shoes and looking for stylish comfortable pairs that would work with PD rather it has become another challenge to thrive on. I have discovered that I am unable to wear high shaft boots without zippers – hard to put on and nearly impossible to take off. Never mind the off balance waddling that sometimes would occur if begin to shuffle while wearing them.

Thankfully, as I have improved with medication and therapy, I am so happy to put away my tennis shoes which I hope not to see again for a long time. So in the last couple of years, I have been once more augmenting my shoe collection. I find that sometimes, the best therapy for self-esteem and empowering of a woman particularly one dealing with chronic illness like those of us with PD is retail therapy especially shopping for beautiful shoes. This was certainly the case for me this past month. After being hospitalized and being poked and prodded over the last two months, I needed some new shoes to parade about as I slowly regained my composure and returned to my normal Parkinson’s diva self. Although, it began as a simple trip to the mall with no expectations, other than just get out of the house and spend time with mom it ended up being one of the most rewarding and fulfilling shopping spree I have had in a very long time. Particularly when we found this one shoe store that had so many new styles and colors for the fall season mom which happened to be 1/2 off. I love nothing more than buying beautiful shoes at an affordable rate. So I bought grey booties & stylish suede loafers, blue high heel espadrilles, red pumps, my very first pair of brown leather boots in a very long time (since brown is usually not my color), and an evening shoe which happened to be leopard print… no one can be without a high heel animal print to put some fun and mischievousness in a woman’s wardrobe.za

The outing was an exhilarating one which prepared me mentally to continue my PD fight to show PD go is boss. With my new fall collection at my disposal, I am poised once more to continue my work with women in PD alongside health professionals, law- makers and women with PD everywhere. Today, as I finished discussing my impressive shoe collection and latest spree with my sister-in-law, I came across an article I had missed about another young professional with PD who seems to love fashion and shoes as much as I do. She too appears to have amassed an impressive shoe collection as I. But, I must say that at least in her pictures her shoes are better displayed than mine which sometimes end up on the floor because I am too stiff to bend over to pick up. I, like her, am using my love for fashion to increase strides in the neuroscience of PD while empowering other women (you) with PD to do the same. Go ahead use your own fashion sense and favorite shoes to show PD, you still have the upper hand. As the moto for this blog site goes… ” a woman can conquer the world with the right shoes!”

Tips for wearing stylish but safe shoes  with PD :

Be accessory conscientious – don’t buy shoes with lots of traction if freezing nor slippery ones if tendency to fall

Don’t get frazzled and tied down – if you have tremors that are hard to control don’t want shoes with lots of stamps or dainty clasps which are nearly impossible to tie. Wear ones with big zippers on the side or one with big buckles better yet slip on if having trouble bending

Always keep a spare as I often do when I travel I wear lower heel more comfortable shoes that I can change easily when I arrive to my conferences and a more stylish chunkier heel or dressier shoe is called for.

A week in the life of a Parkinson’s diva- by Maria De Leon

“It is a beautiful thing when a career and a passion come together.” ~unknown

It is always nice when things work out serendipitously. What can be better than combining one’s own passions?  I tell you there is a great joy when your passions and interest and mesh together as it did this past week for me.

I was forced to be on a strict diet for the last 3 weeks in preparation for this past weeks poking and prodding in order to rule out any underlying recurrent cancer. Not being able to eat seafood, nuts, pasta, bread, or  dairy products was a challenge. Particularly when my to go snack is a handful of nuts. Plus, having teenagers around who are constantly foraging and gravitate top these same food groups did not make it any easier. I must admit it was hard and had to sneak in a couple of bites here and there of bread. Mom making fresh flour tortillas for breakfast did not help in the least.

So of course when my tests were done despite having severe nausea and feeling weak, I headed straight to an Italian restaurant to indulge in some lentil soup, and chicken sandwich loaded with mozzarella cheese, only after taking Zofran.

I was so extremely overjoyed to enjoy food once again that although the nausea seemed to have returned after eating, I could not pass the opportunity of visiting one of my favorite clothing stores-TALBOTS- love their red doors! Especially since there is none close to home. Plus,  I was sad I would have to miss yet again another great customer “party.” To my surprise, they were in the midst of hosting a fashion show. Of course this delighted me completely and quickly found a spot to sit. Initially, the nausea, heat and hot flashes from the small radiation doses I had received were extremely distracting. But as my husband always says “where there is a ‘Bebe’ (one of my many nicknames) there is a way.”  Surely I was not going to miss this fashion show and special prices event which I had stumbled into fortuitously just because I had some side effects to the treatment and was stiffer than usual.  So for a while I simply sat there quietly enjoying the ambience wishing I could feel better so I would not be sick in the middle of the floor. I stood once again and made my way to the table of delectable goodies to grab some cold water to take more pills when one of the attendants asked me how I was liking show. Trying to be polite and making small conversation so I could return to my seat, I asked how the models were chosen? she then proceeded to ask me if I would be interested in modeling for them at their next event.

Seems like suddenly I was experiencing another ‘Kamehameha’ moment all over. When we were in Hawaii over spring break while doing our usual touring, I began to experience severe discomfort which escalated to more intense pain in my back as we were walking. but suddenly upon reaching the site where King Kamehameha statue is located in Honolulu  because it is the headquarters for the T.V. show Hawaii- five- o, I became so enthralled that my pain and all discomfort dissipated completely- forever known in my family as the ‘Kamehameha effect.

Image result for king kamehameha statue in honoluluT

Having regained some energy, when the national sales manager Pam approached me about what I liked about their products and fall line, I seized the opportunity to discuss possible partnership to do Parkinson’s awareness just like they do breast cancer awareness. After discussing my role in advocacy, my platform on women’s issues in PD and explaining my love for fashion and need for women with PD to feel empowered over their disease, she was completely on board. although, they could not endorse PD as they do breast cancer awareness, she was willing to take back to headquarters and in meantime offered to partner in the winter for a charitable event with their red winter wardrobe line which could involve several stores in the Houston area. Although, nothing is set in stone as of yet, the possibility of this is taking place is terribly exciting, more importantly the seed was planted. Like all fruit trees  even though they must be watered and cared for, a fertile soil is essential for it to take root and grow. Lets hope this new idea takes and leads to greater awareness in women (gender) issues within the Parkinson’s community.

Furthermore, I was ecstatic about the possibility that I mentioned it to a good friend of mine who happens to be a drug rep for Azilect and she took was excited by this that she said she would talk to her superiors.

After spending a week in my old stomping ground (Houston Medical Center ) and seeing patient after patient with PD many of whom were young women- the time to take action is now and what better way to bring women of diverse backgrounds together and inform on PD then through a fashion show. After all, as one of the world’s best fashion designers who happens to be a Hispanic woman like myself  – Carolina Herrera, once quipped : “the impossible does not truly exist for (a PD) woman only time to achieve it.”

Together we are strong

Together we can #end PD