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)