
Women & PD conference
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Enjoy a leisurely Sunday afternoon sipping your favorite beverage curled up on your favorite couch. Relax let your mind go free & Remember that you are fabulous!! Life isn’t perfect but your outfit can be because it’s a reflection of who you are inside.
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| F | E | A | A | G | A | I | C | N | E | L | A | B |
WORD LIST:
ART
AUDREY HEPURN BAGS
BALENCIAGA BLING
BOOTS BRIGHT
CAROLINA HERRERA
CATWALK CLASSY COATS
COCO CHANNEL CONFIDENT CROWN ELEGANT ETERNAL EYELASHES
FIERCE GOWN IRREPLACEABLE MAGAZINES MICHAEL KORS
MOONSTRUCK PERFUME PRADA PUMPS RADIANCE
RED LIPSTICK RUNWAY SCARVES SEXY SOUL STYLE TIFFANYs
VELVET VOGUE WHIMSICAL
Stay tuned for more fun puzzles and activities in my upcoming publication of Parkinson’s DIVA:Hello Possibilities – a Journal for everyday life with PD.
@copyright 2019
all rights reserved By Maria De Leon MD
“It’s a new dawn, it’s a new day, is a new life for me”, are the words that I want everyone to shout out with me this today! Although, half of the first month of the new year has already swooshed by, there is still time to think about our goals for the year and how we will manage while trying to battle an all encompassing disease. A decade ago, I was feeling unhappy and trapped although seemingly I had it all. Unfortunately, it took a devastating illness to make me realize what was important in my life. Even though the road has been bumpy and full of perils at times it has also been extremely rewarding giving me a new lease on life. This year as I begin not just a new year but also a new decade in my life I hope to continue reaching new goals and soaring to new heights along with all of you.
But in order for us to continue climbing and growing as people and showing our illnesses that we will not be hostage or defeated by Parkinson’s, or any other chronic illness we must start by being S.M.A.R.T. in other words in order to keep moving forward we must set goals that are:
Specific: Make time for what really matters to YOU, your family, & God! Rest, eat well and take medicines on time.
Moderate: Don’t over extend yourself. Remember that we unlike others have even less energy and less mental stamina at times so we should choose our projects carefully. Start small on a goal or project and build your success by mastering that one thing at a time. We can’t just get up one day and expect to write a novel if never written before (believe me I tried- it took a lot of work). There is a learning curve to everything worth doing even for us to overcome our physical and mental impediments.
Achievable: Focus on reaching plausible goals- stop falling, stop choking, exercise once a week etc. Always act and think in terms of what you CAN do and achieve rather than on what you CANNOT do. Example, this week I will try not to miss my noon dosages. Instead, I will set an alarm to remind me to take my medications as scheduled.
Recordable:Â Remember that you cannot manage what you can’t objectively record. Go ahead keep a diary of your progress (or lack of). this will make you accountable. This will help you and your doctor know what you must work on together.
Time-Specific: Review your goals monthly, weekly if struggling. This way you can trouble shoot and change direction with greater ease if having trouble. This requires introspection and being honest with oneself. Healing begins from inside out after all.
If you are S.M.A.R.T in all areas of your life not just those related to your illness you can achieve anything and really be able to shout …”I am feeling good today!” Just as I have learned. So stop procrastinating, feeling sorry for yourself and take back control of your life and start living to the fullest. It won’t be easy but it will be very rewarding I promise.
Sources:
Lyrics by Michael Buble _ “I am feeling good”; ‘The word for you today” by Bob Gass
@copyright2019
All Rights reserved by Maria De Leon MD
âWhere there is no vision people will perish.â Proverbs 29:18
This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctorsâ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinsonâs (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinsonâs diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test âŚI have learned that in life like in science nothing happens overnight. We must learn to wait on Godâs time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples lifeâs better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you donât give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus TestâŚWe can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- âI can & I willâ
So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.
Happy New Year to all my friends, families and followers!
@copyright2019
All rights reserved By Maria L. De Leon

“In all things give thanks…â 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 my ongoing ever complex not one but two chronic illnesses. Having now been diagnosed with lupus as well!
This year has been a year of many important milestones- celebrating 20th anniversary, turning 50, getting the opportunity to be a âstarletâ for a week, reuniting with long lost friends, honored to give first all women with Parkinsonâs conference in Indiana, had the honor to be part of an avant-garde weekend retreat for Parkinsonâs patients and their caregivers in South Dakota with nearly a 100 in attendance, being part of a pilot program to help young women to grow spiritually, learn life skills, and be empowered in the midst of their circumstances in order to thrive as successful adults turning into tomorrowâs fearless mothers, wives, friends, professionals and leaders. Finally, I also had the privilege of having my âparkinsonsdivaâ blog be recognized twice as one of the BEST! In the PD community (This of course could not happen without all you wonderful people (women) who take time to read it and make it one of the best! thank you!)
I was touched by one of the most beautiful common experiences which took an unexpected twist for a memorable and meaningful events of my life just when I needed hope and encouragement the most.
We all know that most of our lives are punctuated by peaks and valleys and although we wish we could go from peak to peak there is still something beautiful and comforting in the valleys. The valleys in biblical times is where one was most certain to find God and healing could commence from inside out. But aside from finding salvation in the least likely of places, we also have signs that continue to inspire us and gives us hope in our daily walks. When my dad was terminally ill, I witnessed the most magnificent double rainbow as I was driving home full of tears on my way back from the hospital and upon seeing such spectacular view I felt at peace and knew everything was going to be okay.
Four years later, about the same time my dad started his downward decline I began to have serious medical issues which have been taking me away to some extent from you and the things I love. Yet, on my way back from a very long and arduous trip to the hospital and a slew of specialist as I dosed off while my mom drove, I saw the edge of a rainbow. I wondered out loud if anyone had ever seen the end of a rainbow- after all they are said to be full circles which I had privilege of seeing once before in the Las Vegas. Perhaps there instead of a pot of gold I could find a greater treasure like health once more.
Suddenly, I began to see one rainbow after another all sizes and brilliance and then we came to the end of a rainbow it merged right into the spot where our car was standing at the light but if you looked up it seem to sprout out of us from inside the car. I sat up and marveled at the phenomenon but in the next 40 minutes of our journey this occurrence took place at least 4 more times.-lifting my sadness, and strengthening my weakening resolve to keep on fighting for the people and the things I love most. Just to let me know that these signs from heaven were not mere coincidences that he still was in control of my live and my well-being and that my faith in God had been duly noted for once we arrived to a sunny home leaving rain behind- when I stepped out once more as the sun was beginning to set amidst a purplish sky there it was once more a splendid rainbow across the sky.
You may say, how can I give thanks living with PD? Or how can I find joy in my present circumstances? Believe me, I understand your trepidation. Is not easy to feat to face our fears but you can do it because you are not alone. We (especially me) are here to share the rainbows with you to help find your inner peace and conquer the valleys of loneliness, illness, frustration, and hopelessness. As I have learned to conquer my fears of living life with a progressive debilitating illness and face head on an uncertain future by believing in God you too can find harmony and give thanks in the midst of adversity.
Although, there have been many losses I have also experienced many great things this year when is all added up the pluses will definitely outweigh the negatives. I continue to be grateful for my health however failing it maybe at times, my family, friends and the whole Parkinsonâs community who has invited me into their homes.
Thank you,
Parkinsonâs Diva
Happy Thanksgiving!!!!
Copyright2018
All rights reserved by Maria De Leon MD
Before Parkinson’s (any chronic illness, we all “lived like water flowing down a hill..going in a single direction until we splashed” against a rock which has forced us to find a new path.
A Relationship by definition is the way two or more people are connected but more importantly how they behave towards one another. As long we live in this world, we will always have relationships some of which are closer and more intimate than others. These latter ones are the ones that become more deeply impacted and can be totally uprooted by our behavior, the choices we make and the things that impact our lives.
We know that no two people are ever alike and the fashion in which we deal with stressful situations is no exception.This is the time when boundaries will be pushed to the limit.
So it should not be a big surprise that when major life stresses occur in our lifeâs any and all relationships will be put to the test. The hardest hit are always the ones closest to us like our immediate family and close friends.
I too have lost relationships of decades because the person I thought would understand my shortcomings would understand. Although, the losses hurt and the relationship mourned I had to come to terms that my health was more important.How do we keep our most valued relationships from becoming part of an UN-salvageable shipwreck?
Setting appropriate boundaries.
We canât expect to have good relationships or understanding of our needs; much less be able to tell our friends and family what we like to get from them to help us continue being the friend, partner, lover, sister, and mother. Although, these will have to undergo some type of modifications to allow for lifeâs changes in both parties.
Discuss gently with the people you love, the specific issues you have and then try to find ways to get around these issues. For instance, I tell my friends and family that in order to protect my limited energy/time that may be needed for a higher priority, I reserve the right to cancel a commitment especially if I am not well.Sometimes however despite our best efforts casualties will occur and we must learn to let go.
When we set boundaries saying what we will and will not accept in our lives it forces the other person to evaluate their own boundaries.
How you handle these strains depends on the intimacy of relationship and how valuable that friendship etc. Some relationships canât be dissolve such as familial ties but can become estranged with lack of communication.I am sure all of us have experienced strained relationships during our lives particularly after receiving a Parkinsonâs diagnosis. At times is hard even for us to accept our own illness much less for others who are mere spectators to fully understand our condition as outsiders.
For instance, my close friends know that my life changes day to day and so in making social plans we have learned to give each other leeway in changing plans last minutes as long as we both get the same opportunity. Equally we are all open to spontaneous planning to gather. In my case, people that have trouble accommodating to this my new life and insist on making plans way in advance and or in getting upset if things change last minute have been for the most part excluded from my social circle. Similarly because of my ups and downs and loss of voice along with all my other demands, I have adopted communicating with my special friends and family members for the most part via text. This way we are constantly in communication. However, there have been those that insisted and got upset if I was not able to speak directly with them at the time they need me without understanding my own issues and did not want to compromise as to how and when we spoke. These types of demanding behavior even from long term friendships have resulted in breakage of a friendship. But like a bad hair do you must simply accept it and know that you will get another chance to try something new and perhaps even better.
Take away
Because we donât live in a vacuum all of our actions have consequences. You must speak up and let the person know how you feel and is up to that person to respond positively or ignore your circumstances. If that person makes no effort in meeting you half way perhaps is time to rethink that relationship.
Develop healthy boundaries say YES to good things and NO to bad things! Speak your mind gently without feeling guilty but remember that those around you have the SAME right to decide what they deem BEST for them!@copyright2018
all rights reserved by Maria De Leon MD
“It is not easy to be a pioneer- but oh, it is fascinating! I would not trade one moment, even the worst moment, for all the riches in the world.” Elizabeth Blackwell
Living with Parkinsonâs as a women is a lot like being a woman in the field of medicine rare. (I must say I well am versed in the challenges of both) Although both seem to be increasing these days. Perhaps because we are beginning to take notice of the remarkable attributes, talents, and passion women possess. But, most importantly because we are now learning to stand up for ourselves for what we believe and fight for our own well-being and happiness. We are becoming better self-advocates in both arenas.
As a Hispanic woman interested in medicine, I was always teased and discouraged about pursuing a career in a âmenâsâ field. When I first developed symptoms of PD, I again was ridiculed for my outlandish claims of having Parkinsonâs as a young woman; after all this was supposed to be an illness of predominantly older white men.
Apparently, I have never been one to conform to norms. I have always fancied myself somewhat of a pioneer for no matter where I am I always seem to be the exception to the rule (in who I am, what I think, and what I do- always sticking out as a sore thumb). Nothing seems to cause so much shock in people as me being a Hispanic female neurologist. Not unlike being a young woman with PD. Both usually cause some type of disbelief followed by wonder and amazement. How did I do it? How do I continue to do it? How do I seem to âhave it all?â
Breakthroughs:
It is hard for me to imagine a time when women simply were discouraged from becoming doctors when nearly half of all medical students at present are women. It is equally difficult for me to imagine a time when I did not know a number of young women with Parkinsonâs. Despite these facts we women still continue to face challenges and have barriers to break.
When I first embarked in this Parkinsonâs journey as a patient more than a decade ago, I set out to find answers for the differences in gender and published my first book on the subject: âParkinsonâs Diva: A Womanâs Guide to Parkinsonâs disease.â For it seemed to me that many neurological illnesses like strokes, migraines and epilepsy had unique characteristics tied to specific gender. Women with these illnesses thus required special treatment tailored to their own needs. Similarly women with PD independent of age have different characteristics which separates them from their male counterparts. Many of the challenges women face with any disease unfortunately are directly or indirectly linked to socially imposed norms. For young women with PD, the challenges seem a bit more complex just like starting out in the field of medicine. We need to find our place while pursuing our passions, goals, and attempting to strike a so called âbalanceâ between work and family or on this case home and living with PD. If we donât have the right support we can easily get swallowed up by our circumstances and barriers.
Although, I feel I have achieved many of my dreams and faced many stumbling blocks both as a professional as well as a patient – I have also been privy to many breakthroughs. I am glad to see so many embracing these differences and attempting to learn from these to enhance the lives of us who live with this complex disease.
Legacy of those that went before us: (especial thanks to Dr. M Schiess and to Dr. A. Nunez)
We must draw on the legacy of women all around to continue to make way in both arenas. These great women have been our mentors who have paved the way by showing me and others how to be a physician, a teacher a mentor, a mother, wife and now a patient. Because of their unwavering devotion and commitment to better lives of other women. They stood by me and supported me in my decisions to pursue my area of interest and nurtured my passion. They gave me the skills to look beyond what is before us to what might be. Not knowing that someday, I would use these skills to empower me and other women to become better patient advocates.
What we share in common:
We as a gender independently of our back grounds are united by the fact that multitasking is our way of life. One of the biggest impacts for me as a physician and woman has been the difficulty in multi-tasking that I have experienced since developing PD. It is this inability to carry more than one complex task at a time that has made me unable to continue to practice my beloved profession. But, it has also made me realized that this disruption in task performance can be extremely detrimental as a mother, wife, and daughter. Even when we delegate some of these tasks (like cleaning, cooking, shopping) to others because of our disease we are still ultimately responsible for the âemotionalâ work that goes into it. We still have to plan, organize, supervise the household, our work as well as our kidâs schedules and activities; while we make sure we assist their school meetings, performances, and keep up with their social and emotional growth. After all it is up to us how our children turn up as adults. We want strong confident, well-grounded sympathetic and caring adults (Not an easy feat even when we are healthy).
As a female physician, I knew that it was up to me to find that âbalanceâ between home and career. Over the years, I have learned than that it is impossible to have it all. The balance in life comes not in being able to do everything and have everything but spending your time doing what matters most with those that are most important in your life. This is the true balance. This is also where being a woman doctor and a woman with PD parallel one other. In order to be successful at either, we must begin by setting priorities. We must learn to make decisions without allowing social norms to interfere with or dictate what the rules of our own life and home should be. What works for me may not necessarily work for someone else. I am lucky to have a husband who is a good provider but is also not afraid to help out with household chores when the need arises. He does not make many demands on me – however there are task which he simply wonât address, most of the time because as a man he does not think are important or necessary. He will chauffeur my daughter but rarely knows her schedule.
For all female physicians just like for all women with Parkinsonâs having a strong support system is crucial to being able to weather any storm and share the daily burdens of trying to âhave it allâ or do it all. I dole out my energy to the most important things in my life. For instance being present in my daughterâs life is of the utmost importance. Everything else comes second. When deciding is like doing patient triage, I think about what needs my most immediate attention at the moment and what can wait. Practice doing this and I guarantee that some stresses will begin to melt away from your life.
Challenges ahead:
Although we still have much to learn about gender differences in the area of PD. This is an exciting time. We are slowly beginning to see a shifts in the way we approach womenâs health issues and gender differences in relation to PD. Yet, I like to see the minority gap close and the time to actual diagnosis of women be dramatically reduced.
But know that the strength lies within each one of you. Surely you can remember a time when you thought it was impossible to achieve something or get through a circumstance that seemed insurmountable but like me once I achieved my goal of becoming a doctor all the pain and struggle was worth the effort. You should hold on to your victories and triumphs to build your future upon. You were strong once you will be strong again! Use that knowledge to get through the toughest days with PD or any other challenge in your life and donât ever give up. What has gotten me through all these years first through medical school and now through life with a chronic illness is first Faith followed by a bunch of perseverance and determination. Follow your passion whatever that may be …for me having a purpose to wake up every morning as made all the difference first in becoming a doctor now in being the best mother I can be along with building a legacy upon which all women especially those with PD can have a more fruitful and fuller lives. We all know it is not easy breaking stereotypes, forging new paths, and bringing awareness to issues previously considered taboo.
Learn to roll with the punches and learn from them…there is always a new dream even when the old one seems to have faded away.
Copy right2018
All rights reserved by Maria de LeĂłn