Category Archives: Women &PD Initiative

Woman to Woman: How to be a Successful Parkinson’s Mentor Even When You Think You Have Nothing Else to Give. By Dr. De Leon

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photoDo I Have the stuff mentors are made off?

First, when you are diagnosed with a chronic illness like Sacha and I have as countless other women out there who have been given similar prognosis have wondered at one time or another whether they still had something to teach? When an illness such as Parkinson’s disease first strikes invariably we feel at a loss and maybe a bit like the wind has been taken out of our sails. Some perhaps have even felt like their best years were behind and their dreams were now over so how could I imagine asking anyone to become a mentor?

Well, I want you to close your eyes and think of someone who was there for you at some point in your life when you truly needed a friend or some guidance-are you smiling now? I bet that person brings all kinds of warm fuzzy feelings. Now, you are really thinking, I REALLY don’t have the RIGHT stuff! But, when you stop to think about it that person that took time to see you through the tough times and encouraged you to grow and develop your talents was not a super human being – wonder woman with a cape and truth lasso leaping tall buildings performing heroic deeds although they might have seemed like that to you. Instead these wonderful creatures we learned to lean on, depend on, trust, and bring into the fold of our families started as mentors giving the best part of themselves in such a way that they helped us become the very best we could be. We all have unique talents and skills which could be used to build and foster others talents. After my diagnosis, I thought I would never be able to work with Parkinson’s patients again and ten years later I am more deeply involved in the lives of so many people with PD throughout the world in a level that I never would have thought possible. Because I was fortunate to have many great female role models, one of whom continues to play a vital role in my life even after the change in career and onset of PD that I feel compelled to emulate her (Dr. Mya Schiess) as a great woman healer and mentor.

Remember, the best way to succeed in life and be truly happy is to do something meaningful for another human being- this is a biblical principle.

When you become involved in someone else’s well- being you suddenly begin to heal as well. Give it a shot. Don’t worry about being qualified. No one is ever truly qualified until they begin the journey. All it takes is a genuine desire to help others.

Still not certain?

Can you answer any of the following?

  • I have fallen, failed and been hurt
  • I have endured disappointments
  • I want a better world for my children
  • I too live with a chronic illness and feel a need to help those with similar plight

If you answered YES to any of these you have the STUFF to be a Mentor…me

 

What is the role of a Mentor?

Now, that you have seen how truly gifted you are and how you may begin to feel better about your lot in life through mentoring, you are still wondering if you have what it takes. After all, you don’t have much energy these days and sometimes you feel like all you do is go to the doctor or take care of others already being a mom, a wife, and a million other tittles imposed by those around you.

I would suggest start with practical things that would benefit someone with your same plight or interests. For instance, if you have another woman you are trying to help (can be someone older or younger) may offer her a ride to the store or doctor if she needs it and your schedule allows it (you are already going in that direction or to the same place). This way you are being of assistance to another and not costing you much time or effort. Yet, the sentiment is extraordinarily regarded. So be a servant.

Sometimes, what we really need is for someone to hear us. This is especially truly when we are first given bad news. Use the feelings that you felt and allow yourself to empathize and sympathize for some else in those same shoes. We don’t really expect anyone to solve all of our problems or cure our illness, but a shoulder to cry on is a much appreciated and highly valued thing. This simple act of listening and encouraging someone is typically the first step to a long meaningful relationship returning confidence and worth to the person in need. You can do this over the phone or skype but much better and more effective in person. Be a listener.

At other times, it may be required that you help someone make important life decisions based on your experience and their abilities – a great deal of finesse is required as well as love for the person you are helping for you will not be merely dispensing advice but actual counsel with purpose of making their lives better. A wise counselor always listens more than she talks. Use open ended questions. Be a Counselor.

Finally, you have been where your friend has not and know the perils and victories. Lead the path with love allowing her to make her own decisions. You cannot impose or insist that they do things your way to arrive at the same destination. They must try out things for themselves feeling what is right for them so they can be successful. Learning to find their own unique voice, talent or skill to share with the world that will make them shine just as you shine despite your illness. Sacha’s talent is art, mine is still teaching. Be a Guide.

AS we begin to discover what makes us different in the world of PD from our male counterparts, we should also begin to build up one another as women encouraging, lifting, educating, so that the women with PD that come behind us can be the next leaders, counselors, advocates, guides, researchers and friends for the next generation of women with PD who may even unlock the key to the CURE!

Remember ” A woman is like a tea bag- you never know how STRONG she is until she gets in hot water.” Eleanor Roosevelt

@copyright 2015

all rights reserved by Maria De Leon

New Year’s Resolutions for a Life with PD worth Living!: By Maria De Leon

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Happy new year to all my friends, family, and loved ones! I would like to thank all of you first of all for choosing to walk with me in this PD journey through life. Having wonderful friends such as you by my side is what life is all about. As we commence a brand new year full of possibilities in which every page is waiting to be written, I would like to leave you with a few thoughts to make your journey with Parkinson’s, or whatever chronic illness, or struggle you are facing in life a much richer and fuller experience.  My learning after nearly a half of century of living can be summed up in five parts.

5 things I want us to keep in mind as we make our mark through the New Year.

  • Stand still
  • Listen
  • Learn
  • Have Faith
  • Give back

 

These things I have observed to be the fundamental elements for a life worth living. Although a few skeptics along the road have question my positive attitude and optimism in life as well as my experience with Parkinson’s. A few people especially women have told me that I must have led such a ‘charmed’ and ‘happy’ life to be so full of hope and optimism. As I nearly chocked on the caramel I was chewing on, I thought “charming” and lucky was not a word I would have ever used to describe my life. For dear readers, I have dealt with my share of pain and disappointments and seen the ugly side of human nature yet I choose to believe that everyone has something good in them and everyone deserves a second chance.

First, I was born with a severe birth defect which according to the doctors I was NEVER going to walk so I spent the first year of my life in all kinds of casts and contraptions. Yet thanks to the love of my mom, grandfather and the grace of God, the right doctor was found to correct my problem. Ever since I started walking I have not stop and don’t intent this PD to stop me either!

I also have had multiple cancers on top of the early onset Parkinson’s diagnosis which was an irony in itself.  I had a hard pregnancy making me unable to bear more than one child, yet the joy of being a mom of that one precious child has made up for all the pain. I lost several loved ones within a two year span in which the two most precious beings in my life were included. I tended to thousands of Parkinson’s patients through the years many of whom I watch die and have wept at their bed sides along with their families. I wept even harder at my dad’s bedside when he was suddenly taken ill with cancer.

Even though these are but a few of the struggles I have faced in my life, they serve witness to the fact that like you I too have had a life full of challenges of ups and downs. Sometimes life led me to dark unfamiliar places. I have struggled physically and emotionally with gut wrenching burdens which have stretched me to my limits and then pushed me further still. But, through it all I have learned that without these low valleys and dark places, I would not have found my strength, courage, and faith nor enjoyed the peaks and mountain tops as much. Each and every one of the experiences in my life has served to shape me into the woman I am today who is able to write to you and share her experiences with you to help guide your path with this chronic illness and give you hope and a ray of light for the dark days ahead.

As I recall the words of that one woman who sneered at me as she was perusing my book looking at me sideways exclaiming “what gives you the authority to write about PD?” Simply put: MY ENTIRE LIFE JOURNEY with PD! So I am extremely glad I had the courage, thanks to some of those people who have gone from my life too soon, to write “Parkinson’s Diva ” Perhaps someone will find laughter and love once more in their life just as I have despite having and living with  Parkinson’s disease. If only one person has felt better because of my book, I have achieved my goal.  This lady unfortunately was only seeing in me the end product …a woman who has finally learned to accept herself just as she is flaws and all; who has learned patience thanks to PD, when you move like molasses you have no other choice!diva pic

Dear friends, I hope this year you work on being happy with yourself first before making anyone one else happy. This starts with being able to stand alone in solitude and fine tune your hearing to that small still voice inside of you, for mine has never let me down.

Learn to listen– I often quiet myself by first listening to my own breathing and heart beat until they are in sink and quiet. Take time to stand still at least once a day and replenish your thoughts and your energy, Then learn to listen to everything around you like the laughter of your kids, the rustle of the leaves, the whistle of the wind, the sound of the waves crashing on the beach, the silence after the snow has fallen. Particularly listen to other women. I have women friends from all walks of life and all ages because everyone has a story to tell that is powerful and unique and every one of these precious women has accomplished many feats most by the time they reach early adulthood. Make sure you absorb some of their goodness, soak in their wisdom for it is absolutely priceless. I had the absolute pleasure and privilege this past year of meeting and working with some of the most wonderful women both through the Christian women’s Corp & the Women & PD Initiative. Both had so much knowledge and wisdom to impart it was amazing.

Learn from these women, from your parents, your friends, and from anyone you come in contact with in your journey this year, for they too have a story and a lesson to share with you if you listen. Learn especially from those who love you and particularly from those who don’t. Learn to walk in someone else’s shoes as well as to see life through someone else’s eyes. Learn that in order to make a difference you must first take a chance.

Most things that were invented had to be thought up by someone who had to believe in his or her dreams even though no one else could see the same vision; plus think about it they had to have some kind of necessity, be in a low point in their life or be in the dark otherwise there would be no need to grow or change or invent anything. So with this comes Faith that things will work out for the best- that the darkness serves a purpose to hone our night vision. With faith comes hope for a better, happier tomorrow so don’t lose faith!

Finally you have to be willing to give back to others. Funny thing is that in order to grow and develop and actually enjoy life we must stop thinking about ourselves and actually think about others needs first. So this year I want you guys to renew your passions or find new passions, redefine your world, expand your horizons dream bigger dreams, have higher aspirations, broaden your visions, and  stand up for something worth fighting for like helping those less fortune than you in your PD community.

Provide caregivers a helping hand, fight in behalf of the kids with PD mom’s, aid the moms living with PD. Go ahead and confront the things that scare you such as living with a chronic illness and embrace it to the fullest. Make a difference in someone’s life, you can do this by joining me in being part of Women & PD initiative as a mentor, teacher, counselor, and friend. If you follow these guidelines throughout the year, you will discover as I have that by getting involved and truly listening to others and yourself you will change your own life. You will also be replacing laughter for the many heartaches as I have done many of which nearly broke me. However, now I have joys and rainbows where storms once were punctuated by many friends smiling at me along the way.

This 2016, I admonish you all to leave your comfort zone and take a leap of faith by doing that which scares you…interestingly once upon a time I was terrified of public speaking until I was forced to give a commencement speech in front of 1000 plus individuals. Now I do public speaking for a living. Go ahead I challenge you to Join me in me in daring to be yourself and a true “diva”  or “divo” (one that does extraordinary things with their natural talents) living a life with Parkinson’s disease worth living.
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REFLECTIONS: By Maria De Leon

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As I sit here wearing my new Grinch pajama bottoms, courtesy of my husband who thinks I look especially cute wearing them, sipping a nice cup of hot cocoa trying to think what to write as my last post of the year my mind drifts to the all the ups and downs we have all shared in our journey with Parkinson’s disease.

As the Grinch would say, the year “stink, stank, stunk…” at times.

The year commenced on a sad note having lost my dad to a rare skin cancer at the end of 2014. Then went on to  lose several great friends and acquaintances along the way many to cancer and many others to PD. But just as I lost, I also gained several new friends as the year progressed.

Together we have cried and laughed felt hope dwindle but never fully extinguish. Yet, sitting here thinking on the days gone by I am reminded of my favorite place once more -the beach -particularly when it is summer like weather outside.

Over the summer, my dear friend and I had a chance to take the girls and get away to a nice beach area in New Jersey. Even though we were not there for very long, stepping into that white sand and seeing that blue water, I was immediately transported to a different time and felt like a new person even my Parkinson’s seemed to melt away at least for a few hours.

Imagine as I go down to the beach, I typically travel with my hands full intending to make the most of the day not wanting to waste a single precious moment. So, I walked down carrying an umbrella, a chair, my bag full of essentials like sunblock, towels, and water periodically performing a balancing act to keep my hat from flying away while keep from sinking in deep in the hot sand and falling.

Although, I am Latina I don’t tan well and my pasty pale skin was a sight to behold especially for those who had already been at the beach for days and weeks. Nevertheless, I kept on and thought to myself who cares if they want to stare –let them!

Finally, we reached our destination and we parked ourselves there commencing a synchronized ritual ….planting the umbrella, extending the towels, unfolding the chairs, setting coolers, putting on tanning lotion on the girls as they were are already eager and half way darting into the water not hearing a word I said.

I take a deep breath and lean back in my chair and begin to look about at the glorious scenery. I see a couple who appear to be arguing over what I am not exactly sure?  On the other side there are some teenagers chasing one another while a woman watches them intently over a book she pretends to be reading. The cover looks cool; but I cant quite make out the name of the book…Yet, another woman (perfectly fit and tanned) sitting alone gazing far off into the sea is suddenly jolted back by a lover who leans in from I am not sure where and plants her a kiss.

At that moment, I was thinking it would be nice if my husband were here loving on me as well as I did an eye roll to one but myself chuckling realizing that no matter what I would never look like her.

However, this entire exercise served to remind me of how REFLECTIONS don’t tell us the entire story. Perhaps, others watching me would envy my solitude? ( since my friend had left me alone and gone for a stroll).

As the year unfolded, I realize all of us have faced a multitude of challenges many of which have gone unnoticed by most while some only have gotten rare glimpses of our daily lives. We ourselves have only stared at fragments of others lives who also happen to share our same affliction. Only when we have come together as women & PD Initiative, are part of organizations like PDF, PAN, MAPC, APDA, NPF, and other PD support groups do we begin to break through some of those barriers and see the real unfolding life struggles, heroism, sorrows, and daily challenges.

Despite, the fact that there are nearly 10 million people worldwide who have  Parkinson’s disease in common, all have unique qualities and experiences with life & PD. Thus, I should never presume to set my own standards for living well with PD on anyone. I rather strive to be a mentor, counselor, and a guide based on my own experience as a PD specialist and person living with PD.

As we are but a few days away from a new year, I am overjoyed for a new chapter to be written in the fight against PD, one full of hope and courage where lives are made better and disease is combated and even reversed with new treatments ahead. More important we are made stronger and wiser because we have lived through though times with PD.

WE must remember, as the new year draws near, each one of us is a one of a kind design and thus the PD Journey should also be unique and personal-we MUST own our disease in order to move forward! NOT alone; rather one where the PD community strives to hold one another -up, encourage one another, lift-  up one another, is a mentor to one another, as well as a good listener, and a friend. I suggest that next year instead of seeing someone else’s reflections from a far, we follow our hearts and get involved in someone’s life. Pave the way for someone else’s success with your pearls of wisdom…Do something meaningful and worthwhile for someone else and something good for you whether it be sleeping well, eating right, exercising-walking, yoga, bicycling, singing, dancing, praying, sculpting, boxing, painting…the choices are as varied and as endless as the stars.

 

Many Blessings from me to you and thank you for all of your continued support and loyalty throughout the year! God Bless everyone!!

The Scents of Christmas & PD: By Maria De Leon

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As the Holidays nears the stress sometimes can be overwhelming especially for those of us who live with Parkinson’s disease. As another amazing Parkinson’s woman recently wrote- “life with Parkinson’s is complicated,” to say the least. Trying to cook, entertain, decorate, while finding time to care for yourself can be difficult especially if you have a child whose birthday is around Christmas as I do. To make matters worse the Holiday season is also the time of increase hospitalizations due to strokes. We as women with PD are already predisposed to having a brain attack according to a data presented by Dr. Allison from the University of Pennsylvania, at the Women & PD Initiative Conference women with PD. The risk increases as PD progresses.

Therefore, this and every season we must remain extra vigilant guarding our health and taking time for ourselves. But, how do we do this since we barely have time to sleep or take care of our basic mandatory medical needs from a long to-do list which seems to get longer and longer each year as our disease robs us of our energy and strength at times.

This season, I recommend using aromatherapy from the smells of Christmas already all around you to help release the best known ‘happy’ hormone in our brain –endorphin a naturally occurring opioid which is produced from the anterior pituitary. This wonderful chemical helps relieve pain, fatigue, and gives us a lasting satisfaction providing a true sense of happiness. Although, we as PD patients experience a loss of smell, a small report showed that loss may be specific to foul, putrid odors while sweet and flowery may be preserved that combined with fact that most of us have a dysfunction rather than a complete loss of smell until disease is advance thus we can still use whatever portion is left to our advantage. Plus, since loss of smell is linked to depression, fatigue and memory loss perhaps boosting our olfactory nerves and stimulating them can makes us combat any Holiday blues while filling us with joy and energy.

As you go through the holidays, I recommend that you make a list of the things that are important, give yourself extra-time especially allotting time for naps or unexpected wearing “offs,” let others know you may require assistance and make sure you ask for help; but most importantly make time for yourself! Surround yourself with rich aromas that will help you relax and build beautiful new memories each time those same fragrances are encountered.

For instance, as you are in the kitchen cooking and preparing your Holiday/Christmas meal make sure you add some spices to titillate your senses. This is especially helpful for those of us with more severe olfactory loss (no smell). The spicier the food the more endorphins your brain will release, this may be the reason why I am always happier when I eat my mom’s cooking which is so much spicier than mine.

We know that a big part of the holiday season is baking as well as consuming a myriad of desserts and sweets. Chocolate my favorite substance in the entire world is by far the most complete substance in its ability to release several of the brain’s ‘happy’ hormones like dopamine, serotonin and beaucoup of endorphins. Go ahead bite into a nice warm chocolate cookie or a dark chocolate cake especially one infused with vanilla extract. If you are baking make sure to take a big whiff of the vanilla or the chocolate before adding to your cookies or cakes particularly if feeling anxious for this will help calm you down. In fact have a few vanilla scented candles or oils around the home to give you that calming effect.

Have some citrus foods (orange, lemons) around and peel if stressed, the odor which will linger in your hands will also help to uplift your spirits.

I also love the aroma of peppermint particularly on a cold crisp day it permeates throughout the house –boosting my spirits, and invigorating my spirits helping to stimulate my mind and yours if you try as well, you can either buy as an essential oil, candles, or wall plug ins. Of course what Holiday Party can do without candy canes!!

Lastly, for those of you who still love to enjoy the smell of a natural tree a pine or a cedar are the best ways to uplift and invigorate your spirits and your mind.

My hopes is that everyone has a wonderful healthy, happy, joyful Holiday season and keeps the Happy hormones all year long for a very prosperous New Year!

Enjoy the scents of this and every season of your life along with your loved ones!

 

ALL I WANT FOR CHRISTMAS IS……By Maria De Leon

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This past two months, as I struggled to get a new secondary insurance to cover my long list of medications  as well as obtain a new plan for my family,  I began to realize more and more that this country has completely lost sight of what’s important. Having been forced by “Obamacare” a.k.a. Affordable Care Act to give up our reliable insurances and go on Medicare or suffer the ridiculously exuberant prices of both having an insurance that does not cover anything because for a great majority of chronically ill patients the deductibles are upwards of 3,000 up to 10,000 which was the case for my family and I or get penalized for NOT having insurance, all the while not being able to “afford” neither the medications nor the doctor visits which ironically was the reason why such laws were instituted.

As I sat at my doctor’s office waiting for my appointment, long over due because insurance refused to pay my visits on account that they felt I should be on Medicare, I heard the complains from the patients in the waiting room, the staff, the nurses, and the doctors  about how terribly broken the system has become. As I listened to the stories of medication denial, of exuberant prices even for generics which also require preauthorization along with numerous letters, forms, and phone calls from the nurse and doctor just to get a single medication or treatment approved, the poem “SEE ME” came to mind.

“What do you see…what do you see? What are you thinking when you look at me?-….I think of the years, all too few- gone too fast, And accept the stark fact that nothing can last. So, open your eyes, open and see.. look closer SEE ME!

So My Wish for this Christmas is not a cure but a change of heart… a true understanding of the needs of the chronically ill. Chronically ill patients like Parkinson’s individuals have limited resources due to the nature of the progressive illness – we already stress about finances and the future well being of our family and loved ones and having to add a burden of  choosing to eat or take medications is not something we should have to do in this country or any country for that matter. What good is it to have new medications if the majority of patients can not afford? it serves no purpose to spend billions of dollars in research if no one is allowed to diagnose, treat, or implement care, I say this with the utmost respect. However, as someone who has done research, trained as a doctor and is a patient, I say the most important thing is quality of life and living a full life and you cannot do this without the aid of a doctor that is there to treat, knows how to treat and when to treat so that life can continue.

The problem in this society is that we do not value people. We undervalue the doctors, the skill and the time required to become experts and the time needed to care for a deeply complex disease such as PD. While I was in practice, it took me an average of 55 minutes to see a PD patient. the same is true for my MDS doctor. This means that you can only see about 10 patients a day in clinic and since most PD patients are on Medicare it means lower reimbursement especially since it has been dropping steadily each year since the Clinton administration. Now since Obamacare those in solo private practice in rural communities are struggling to stay afloat. That is  worst for neurologists and PD specialists because we don’t do a lot of procedures which have high reimbursements therefore what practicing neurologists make in a day goes mostly to maintaining overhead -that is to say payment of staff which has escalated considerably due to all the red tape of having to deal with insurances. When you work primarily to pay your staff and office bills while incurring all of the liability is no wonder so few doctors stay in rural areas. this combined with already shortage of neurologists due to being a difficult field, the gap is going to continue to increase while the needs of PD patients will continue to go unmet unless the government along with the leaders of  PAN and other Parkinson’s Foundations step in to better take care of its neurologists especially considering that the population is aging which means increase in PD along with other neurodegenerative illnesses.

I believe that it is within each one of our powers if we unite to make a difference and to bring about change. Parkinson’s patients SHOULD NOT have to continue to experience a great amount of dyskenesias or hospitalizations because they are not able to afford new treatments costing the government and society much more money in the long run than if they would set aside funds to care for patients even if it means decreasing funding research since we are not optimally using the medications and treatments we have at this point. Example- I have been on Azilect for almost five years through samples and done well. However now that I am on Medicare of course its not covered!!! The insurance wants me to try things that are not the same although they claim they are… so I asked my pharmacists how much it would cost for me to purchase without insurance and I almost fell backwards when I got a staggering $1,300 for a month supply so no wonder patients continue to deteriorate in the face of so many different types of drugs and continue to take primarily the old levodopa/carbidopa which alone and for extended periods of time will CAUSE adverse side effects simply because it is the ONLY affordable drug! Well I think it is time we unite and change this short sighted thinking and begin to look at the BIG picture and TRULY focus our vision on the PD community and SEE THEM with their dreams, ambitions, desires, aspirations, struggles and beating hearts full of Hope and Optimism for a better tomorrow…

This is my Christmas wish….

MERRY CHRISTMAS EVERYONE!!!!

 

 

 

(Please feel free to comment or remark on your experiences- I admonish everyone in the various states to send a letter to the directors /assistant directors of PAN of their respective states as to their experiences in obtaining care but especially medication-thank you-God Bless)

 

 

 

Something’s Missing: By Maria De Leon

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“Let God’s love touch you like an ocean breeze…”

A boat without a sail, …an empty bird’s nest, a lighthouse without light…we can walk past these common objects a hundred times without paying much attention or allowing our minds to focus on the missing parts. Yet, when something happens in our lives out of the ordinary, like getting a diagnosis of Parkinson’s disease (PD), we suddenly stop and begin to take notice of the missing components that rightfully belonged with those things we never paid much mind to. We ourselves begin to feel that something within us, once an integral part of our beings is no longer there.

Can you relate to this feeling?

The longing for the old self can be devastating initially. No one else can comfort us no matter how well intended they are. Perhaps, friends are encouraging us to look beyond the illness directing our thoughts towards the blessings in our lives such as family, friends, and loved ones. But despite the good intentions, the initial optimism from everyone else can reinforce feelings of negativity within us, or heighten our grief and depression making us feel like somehow we are the ones not strong enough! Ultimately, this does not fix the desire of the newly diagnosed PD person to revert to the old life, to wish it was all a dream, or to prevent the mourning of something lost.

However, I say to you my esteemed reader that if you have a loved one, a friend, or a spouse now feeling this way, the best remedy is a tender hug and a listening ear for as long as it takes without commentary.

To you who have just been diagnosed with PD, I say courage. It takes lots of it to let go especially in such a deep personal level when the future seems uncertain and frightening. It may require you to change the focus of your life, as well as the direction of your sails, and begin expanding your energy on new horizons but it is a step that must be undertaken at some point. The grief and tears MUST cease and the windows of our hearts once again opened wide open if we are to again enjoy life despite PD and have peace in our hearts.

In time, you will discover that part of you is not missing at all it has simply transformed itself giving birth to something more beautiful like a caterpillar which has morphed into a majestic blue butterfly.

Go ahead spread your wings & be free!

blue@copyright 2016

all right reserved by Maria De Leon MD