Embrace the Possibilities: by Maria De León

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As we reach the end of another year, one thing is certain the one thing we can count on is change. Seasons change, fashion changes, friends come and go, our goals, our likes dislikes change and our health stands in the balance of a see-saw not knowing when we will go up or come down.

When I was staring my medical career, I knew I was in for a long haul of commitment and focus. I needed to get myself prepared for what laid ahead mentally. So my best friend from childhood and I decided to take a trip to Acapulco. No better way to replenish the soul and mind than by sitting at the edge of the ocean contemplating and listening to the sound of the  waves. After 27 hours, we finally arrived anxious to enjoy the beach, my friend and I ventured out in the evening as the sun was going down and the tides were beginning to pick up. Yet, all we wanted was to bask in the view and maybe get our feet wet a bit. I carefully laid out my beach towel, my clothes, sandals, and other possessions, I was about to sit on my towel when a huge wave crashed upon the shore engulfing my belongings. Our carefully chosen spot had proven to be not far enough from the rising evening  tides. Apparently, this was high tide season. As the waves retrieved, it carried with it all my possessions leaving me mystified.

As I watched all of my things being dragged into the ocean, I took off running after it. It had taken my wallet. However, the waves were not only faster but retrieved deeper into the bay. As we sat there a bit dumbfounded about how quickly it had all happened taking us by surprise and resigning myself that on my first day I had lost all my money.  When a few minutes later another huge wave happened upon the shore bigger than the first one as it crashing briskly upon us and the rocks but as it retrieved I began to notice a resurfacing of my things. Quickly my friend and I sprang to retrieve my wallet first before it could be engulfed again perhaps this time never to be seen an de completely ruining my vacation. Of course, everything was completely soiled. The large beach towel was filed with muddy sand, seashells and a few small crabs. I did not care all my things were back.

This event thought me that sometimes the change of the tides can take us by surprise leaving us discombobulated and dumbfounded, wondering were to go next or what to do.

But, just as surely as the sun rises and sets, if  we just keep breathing staying alive fighting for the things we want and keeping a watchful eye eventually the same tide will come again bringing back that which we thought was gone and lost forever. Better yet giving us a way to move from the shore to new lands and dreams because at some point all of us have to move person past the crest line.

as we start a brand new year with 365 blank pages to fill, remember that although we are not in control of when the tide comes in or how big the crest of the waves are, we are in control of how we allow the tides of life to impact us. In the same trip a couple of days later, my friend and I decided to eat at this mom and pop makeshift restaurant on the same beach while we ate barefooted. I enjoyed the coming and going of the waves past my feet underneath the table where we sat. To this day I savor the thought and wish to return to that place.

So as you find yourself face to face with an unexpected tide which might leave you Topsy curvy rather than panic or give up; wait awhile the tide will eventually change allowing you to move forward an din doing so take inventory and breath in the endless possibilities. Notwithstanding that It is our impossibilities that become our greatest gifts – it certainly has been the case for me having reinvented myself and enjoying my life fully despite living with pd for a decade.

Trust that nothing is ever wasted and in the end if you allow yourself to embrace the changes that the tides brings you will emerge softer, gentler, kinder, more courageous, and stronger than ever.

Happy Holidays!

@copyright 2017

all rights reserved by Maria De Leon MD

A Year in the Parkinson’s Diva Life: By Maria De Leon

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A woman is strong because she has been weak; she is beautiful because she knows her own faults; and lives without fear because once she was afraid.”

Carolina Herrera

As we draw near the end of another year, I am prone to reflect on the good, the bad and the ugly that which has greatly impacted my life. Not everything that touches us or makes us who we are is necessarily good or at least not on the surface.

This year has been a year of great losses for many of us as well as great victories. Is my experience that these usually go hand in hand. The triumphs allow us to get through the sorrows and hardships while the devastating moments make the victories that much sweeter.

The year started strong with me finally getting better after last year’s pulmonary embolism and TIA (mini stroke) which took me nearly 6 months to fully recover.

Then it suddenly took a turn for the worst with my best friend being diagnoses with stage 4 cancer! a week after we had made all kinds of plans for the year…

Got to travel to DC see old friends, make new friends, and even meet a few celebrities such as MJFox while advocating for changes in public policy to improve research funding, and better more affordable health care at Capitol Hill.

Traveled to a new country with my husband and daughter and found the perfect city that made my hair look fabulous because there was no humidity. Who knew my hair could look good first thing in the morning?

After much prayer and seven long months of grueling chemotherapy and bone marrow transplant, my friend is finally cancer free- confirming that miracles still exist!

Saw two of my nieces and nephews graduate – one doing a master and one started college and i got to play the fun Tia (aunt) role throwing parties and even traveling with my niece to her new university. Since it all is connected somehow, I got to meet my new friends (Kate & Chris) at Health Union where I am now a contributing author on the health communities of  http://www.migraine.com and http://www.parkinsonsdisease.net; where I am cherishing the opportunity to work with like minded individuals who are just as passionate about making a difference in someones world.  For me doing something that I love doing aside from Parkinson is also a huge plus.

Let’s not forget that this year, we celebrated 200 year’s since Dr. James Parkinson annotated his observation on a disease we now call by his name. As such, I was a part of a huge campaign to bring PD awareness to the Hispanic community in this country by appearing on sites like Dr. Isabel show on Univision and was broadcasted around the country through the radio to several Spanish speaking station from Texas to Florida, Georgia and the Carolina’s. Plus, I now can boast of having two published books with my latest Spanish book on PD – Viviendo mas alla del parkinson was recently published.

Of course before the summer was over, I was down for over two months with a viral infection after seeing my doctor the day before, where he complimented my good health and said i did not need to see him till next year. Famous last words! this little viral infection caused me to miss my opportunity to travel to South Dakota. Fortunately, I was able to at least virtually meet a few of them including saying hi to my friends whom I like to call ‘the Mary’s!’

Lost an old friend and regained an old friend. But, as I was driving around the other day dropping off  and chauffeuring my daughter and classmates all over the place I realized is not such a bad life. Sure I can’t multitask to save my life, can’t remember even my own name a couple of hours after taking amantadine or even where I opened a bank account – “at some bank on a corner street”, I told my husband. “Which corner?”, he asked extremely perplexed since there is one in nearly every corner. “I don’t know,” I said. “I am pretty sure I will know when I see it.” Not comforting words to my husband or any other man.

I get frustrated easily and my goodness the heat is unbearable dripping droplets of water from my forehead on a regular basis but not a drop of fat lost- husband’s theory is that my body is conserving its nutrients because I seem to go into starvation mode for a few days at a time when my gastroparesis is at its peak. At any rate, I have learned to appreciate my curves and the moments when I am totally ‘me’ feeling as good as any young healthy person would – for which my husband has dubbed my life as the Curious Case of Maria D. When I am on top of my game and not choking on my own saliva and not  tripping over myself or running over the garage- I seem to be getting younger and stronger in his eyes!

Perhaps, I am not afraid of PD because I was once consumed with fear of the unknown; it no longer has a strong hold over me. Thanks to PD, I have learned to be more forgiving of mine and others shortcomings and have learned when to rely on my strengths and when to ask for help because I am weak- which happens a lot. I constantly get inspiration from strong, independent, beautiful, intelligent Hispanic Women who happen to be icons in their own fields such as Isabel Allende, Carolina Herrera. i identify with the latter because she began her career  in her 40’s, at an age when I too had to make a new transition in my life from physician/clinician to writer/motivational speaker and most important of all patient advocate.  And like her, I believe that fashion is an outward expression of ourselves free and unencumbered. But, the best garment any woman can wear is knowledge.

Aside from all this things for which I am truly grateful,  one of the greatest gifts and joys has been able to share my journey with all of you.

Thank you & Happy Holidays to everyone!

XOXO

@copyright2017

all rights reserved by Maria De Leon

3 Tips to Making the Most of the Holidays: By Maria De Leon

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“People change when they realize they have the potential to change things.” Paulo Coelho

Here we are again approaching what many people feel is one of the most stressful periods of the year although its intention by design is to be one of a joy. Adding a chronic illness to the mix can make things more volatile even in the best of circumstances.

As a neurologist, this was always the season I dreaded because I knew that I would have to take care of many sick people whose depression, loneliness, hopelessness, and general stress invariably exacerbated an underlying chronic illness causing them to decompensate.

In order to avoid this scenario- the following should be considered.

Have a plan

This means you have to be realistic about your health and family situation. If traveling is difficult ask members of family to come over to your place instead. If this causes too much chaos or is not feasible for others to travel either then consider gathering with close friends or a smaller gathering with loved ones.

As most of us that live with chronic illnesses will attest to the fact that mornings are usually not our best time. So don’t kill yourself trying to have everything ready by lunch time. Take your time, and ask to meet later in the day when you are more likely to be at your best to enjoy the fellowship. Focus on fewer but more meaningful interactions. This way if you have trouble speaking you can more easily focus on one on one conversation. Make sure to maintain eating and medication schedule throughout the holidays.

Do things that make you Happy

This year my family and I have decided that instead of rushing to see other relatives, not knowing how I will feel that day while feeling pressured not to let anyone down especially since those members have schedule constraints, we will leisurely arise and enjoy a meal at home. I love watching the Macy’s parade, this year I plan to enjoy it in my p.j.’s sipping some hot cocoa with my daughter and nephew by my side.

Rethink the Big Picture

Before you commit to anything, ask yourself what are the pros and cons of doing whatever it is you are doing? Will these activities give you purpose and joy or leave you more frustrated and worn out? Or worse cause you to decompensate physically? Having a clear purpose in mind can be extremely gratifying as well as help reduce stress and burden brought on by PD. My main purpose now is spending as much time as possible with my daughter who will be leaving for college soon. Making her happy and enjoying her company is my principal motivator for making this season the best ever.

Find your purpose to enjoy the holidays this season which will leave you not only with great memories but a sense of well-being.

BEST GIFTS ARE THE ONES THAT SPARKLE!!!! So let your inner DIVA sparkle this holiday season!

 

Painting by Ross Webb

@copyright 2017

all rights reserved by Maria De Leon

Things that Send a Chill Down my Spine: By Maria De Leon

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” If  you are reading this than you are blissfully unaware of what is behind you (or rather in front of us).” ~unknown

As we approach the end of October and many are beginning to get excited about Halloween, I begin to ponder on all the scary and crazy things we have gone through this year. This year seems like nature brought about the biggest scares with hurricane after hurricane and wild fire after wild fire leaving many homeless, destitute and without medical care to boot.

Many of us may still be reeling from the personal losses we might have endured this year while having to contemplate our mental and physical well being with great trepidation as we go into a new medicare enrollment period (since most of us with chronic illnesses are under this program).

I fear for the future of  the community of chronically ill and disabled individuals (e.g. Parkinson’s patients) as it seems no one is really looking out for them. All year there have been many attempts to alter the present health care laws. Although,  supposedly these were meant to improve current policies in reality all proposal have fallen short of  their intended goal -helping the sick and poor. Fortunately, most have been rejected but no real progress has been made in this arena.

Now, the new passing of bill failing to revive subsides for poor may bring a whole host of new issues especially for states with a large number of indigent and people on medicaid as is the state of Texas. some experts are now claiming that “President Trump’s decision to cancel key ObamaCare payments could be backfiring” by bringing into effect the laws of supply and demand forcing patients to shop around for better deals.

However, this reasoning is fret with dangers since we are talking about an elderly, sick, and in many cases poorly educated population who have neither the time, the skills, or the savvy-ness to know that there may be better plans out there. While for those of us like me who are able to and know about these options it is still a huge ordeal that requires countless man hours to determine what is the best plan considering all the medical issues and number of medications I take.  Plus, when you change plans, there is always a risk that a doctor whom you are well established with will not take that particular insurance. As it has happened to me and many others when changing insurance due to enormous premiums i am now forced to see my specialists out of network costing me even higher out of pocket expenses. One does not always have this liberty one due to increase expense for seeing out of network specialist and two  there may not even be a specialist in your area covered by your plan. This is one of the biggest reasons teleneurology for Parkinson’s needs to be allowed to be covered across state lines.

Also, even if a person with much labor could get a better deal in insurance premiums, there is no guarantee that the medications one needs to function will be covered. As we get sicker and more disabled we are less able to cope with all these changes and regulations making it harder for chronically ill to stay insured and receive adequate benefits. My insurance has already informed me that my premiums were tripling for next year- which means need to find new insurance but it is with heavy heart I have to undertake this because i finally got insurance after 8 months to cover the medications that I need. so i am not looking forward to having to battle this issue again. because it is easier to stay with current plan when you have so many things going on like trying to survive a chronic illness, i see these new changes in the law as causing bigger problems to the infirm.

Getting rid of medicare part D would greatly improve things in my opinion. Ever since this was introduced i saw a huge increase in my patients having exacerbation of their once stable illnesses as well as increased hospitalization due to the fact that many like me who take a lot of expensive medications reach the gap within first 2-3 months of the year leaving them with a choice between medicine or paying other essential bills. in the past prior to this law, most doctors including myself were able to help out patients by providing samples or finding resources to meet the needs. But, once part D came into effect these options were taken away.

So in effect the uncertainty of my illness for upcoming year along with all the healthcare changes coming our way are more frightening and terrifying than most things I can imagine especially since like many others I am part of the  sandwich generation. I not only have to worry about my own decaying health but have to take care of several infirm elderly parents and raise a child.

Thus, I urge everyone to contact their state representatives regarding need for teleneurology and improvement in access to health care and ability to maintain our own physicians and right to have the medicines prescribed by our healthcare professionals.

In conclusion, this Halloween let’s ‘use our imagination not to scare ourselves to death’ but to inspire us to pursue those things which are worthy of our time and resources for a better, healthier life with PD (and any other chronic illness).

Happy Halloween everyone!  Eat drink and be spooktacular!hall

Sources:

Sullivan, Peter. (Oct 27 2017) Trump Obamacare may bolster law

Judge rejects bid by 18 US states to revive ACA subsidies Reuters health Info Oct 25 2017

 

@copy right 2017

all rightsd reserved by Maria De Leon

 

 

Singing the “blues” away: by Maria De León

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“If you are feeling BLUE try painting yourself a different COLOR!” -Hannah Cheatam

We all have episodic feelings of the blues, feeling blah or meh; but how we cope and deal with these feelings are as crucial to our happiness and well being as air itself.

The other day after being sick for nearly 3 weeks, I was finally on my way to feeling physically better. However, my emotional state did not seem to have received the memo. I awoke completely refreshed physically and energized for a new day  but I was just feeling blah inside. Perhaps, I was now crashing after having been so hi on steroids.  Whatever the reason my insides were not matching my outside was not as important as figuring out to how to overcome that feeling of  genuine indifference.  Yet, despite this general lack of care, I had a little voice inside of me that kept playing the words… “tell you what I want, what I really really want..” (Spice Girls- Wannabe) before I knew it  I was uttering words out loud without much feeling initially.blue ocean

I was not about to let the feeling of nonchalance get in the way of  enjoying the gorgeous cool sunny day. So I opted to start singing softly at first then louder. Since I was not particularly feeling happy, I began to think of songs with the word ‘blue’ in the title and thus began my recovery to actually feeling happy inside. After singing a few lyrics from such songs like blue velvet, blue Christmas, my brown eyes blue, blue bayou, blue moon,  and blue (da ba dee da ba daa), I actually began to feel happy and dance moving shoulders, head and hips. My ‘blue’ song repertoire took a turn for a more upbeat selection beginning with Pharrell’s Happy song.

As Bob Marley once said, ‘music when it hits you it goes straight to the soul.’ I discovered that music in its purest form can express that which is silent within us  and in doing so it can lift our mood  by releasing a cascade of happy chemicals starting with dopamine.

In less than half a day I was dancing singing and feeling whole and myself again.

So next time you too feel like everything is blue and all you want to do is shrug your shoulders and throw your arms up in the air because the meh feelings have taken over start humming and singing even if it’s a few chords of sad, depressing blue songs and move to a more up beat repertoire and before you know it you too can beat the ‘blues’ trough song. May be we can start with “you don’t owe me” Parkinson’s and go slowly (despacito) from there.

Copyright@2017

all rights reserved Maria De Leon

“How Do You Solve a Problem like Maria?”: by Maria De Leon

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When life gives you lemons -you make lemon meringue pie…

For the last few weeks, i have been so excited about going to South Dakota to a Parkinson’s retreat in an abbey and all i could think was ..running up a hill singing “the hills are alive with the sound of music…” from one of my all time favorite musicals and beloved character because it not only happens to bear my name sake but is the first movie i recall seeing with my grandfather as a child in Mexico.

But as usual, when I get too excited about something as of late PD always rears its ugly head. so perhaps i should have written how do you solve a problem like PD?

That’s the million dollar question, although no solution as of yet we have to still find a way to make margaritas, pies, lemonade and whatever else you can think with the citric juices of lemons that sometimes having a chronic illness leaves us with.

Although, the theory of PD being immunological is not proven, I am a firm believer that at least in those of us with LLRK2 phenotype do seem to have a higher propensity for getting immune based illnesses like UC ( Ulcerative Colitis),  and other immune mediated disease like thyroiditis and diabetes. ever since i been diagnosed with PD my immune system has been more chaotic than ever leaving me more and more prone to any and all viruses and bacteria circulating about which for the average healthy person would not even have a minimal reaction. But for me a common viral upper respiratory infection it leads to a whole cascade of problems and a new one this time around.

As all of you who live with PD and other chronic illnesses very well know it takes twice as long to recoup from any minor illness than normal people do. One way i have learned to cope with this is make sure start treatments ASAP, drink lots of fluids, rest and take extra vitamins, and levodopa to decrease length of illness which typically works fine. this was the strategy since i got sinusitis infection over 10 days ago knowing full well that i have a huge list of commitments and especially looking forward to traveling to see old friends, meet new ones and run up the hill although with the cough and bronchitis I developed i figured i would be more like a slow crawl. nevertheless, I was optimistic surely I would be all back to normal in more than 10 days time.

Well, little did I know that Maria an unsolvable problem by itself combined with my old pal Parkinson’s would come in to wreak as much havoc on me as it did in Puerto Rico. I am always amazed how many new symptoms of PD I am discovering as a patient that I never knew as a doctor specializing in this disease. I have treated many a MS, stroke, and spinal cord injury patient with dysautonomia- in other words dysregulation of the autonomic system. This is where a mild or seemingly innocuous event like a viral infection can trigger a whole host of responses from the body worst than infection itself. typical triggers are dehydration and bladder infection. Even in the multi system atrophy (MSA) patients who commonly have this problem, have I ever seen such an exaggerated response.

In Parkinson’s patients the dysautonomia is usually confined to abnormal functioning of bladder. But, never in my years of treating patients have I seen a full blown decompensation of organs which are regulated by autonomic system..means all the organs which secrete substances like the pancreas, heart, bladder, sweat glands, gut and so on. So i am experiencing horrific chest pain , breathing problems with increasing mucous production, severe palpitations, increased heart rate, nausea, increased tremors, and profuse sweating. Even though I am freezing to death feeling like I am inside an ice box. so in the middle of 80 degree weather, I am looking ridiculous, as per my daughter, because  on top of all my layers of clothing I have a coat and walking around with a faux fur blanket trying to keep warm. Plus, I am trying to keep my sugar from dropping by forcing down food.

When patients with this problem have an infection they have an exaggerated response of dealing with infection as was my case- having higher fever, increased exaggerated sweating, chills and rigors. But, interestingly and another one for the books is that my cold symptoms were much more unilateral making me think i had a thalamic stroke (organ in brain involved in temperature regulation) or a lesion in my spinal cord. but, after consulting with 2 other movement disorder specialist we came to conclusion it was most likely the PD; although never seen as affecting one side more than another- hence unsolvable Maria problem.

But, as I am always an optimist, I feel that my misadventures have once again left me with a new lesson to impart to all my fellow Parkinson’s patients. should you ever have this problem – don’t panic. But, if having symptoms need to talk to doctor ASAP because it can potentially be life threatening. We treat symptomatically.  This means lots of hydration, high salt diet, head elevation, sometimes requires iv fluid replacement and medications to increase blood pressure like midrodine, flurocortisone.

And of course treat underlying cause which triggered problem in my case upper respiratory infection.

On the positive side, I am hoping that all the sweating has shrunk my waist line a bit or at least partially counteract the effects of the steroids given to me – which thankfully helped to increase my blood pressure and my sugars to prevent me from crashing.

So instead of running a a hill– i will stay home and do conferencing via skype discussing how to solve a problem like me and pd.

 

Source:

To learn more about dysautonomia go to…

  1. ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

 

 

 

Do it with passion or not at all: By Maria De Leon

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“It takes a glacier about a year to move, but eventually it carves out canyons.” Perseve(red)

Since the time of Ancient Greece, a life full of passion was one worth living well. Whether or not the ancients had eulogies at funeral is unclear. However a man’s life might still have been measured on what drove him- the amount of  passion or ‘pathos’ he possessed – that which made him go all in. In other words, what is it that makes us fearless in pursuit of what sets our souls on fire? For me, I have 3 passions God, my family and Neurology in particular working with those who live with Parkinson’s in their lives.yo y mi libro diva

In the last few weeks my love for PD has been fueled as I have traveled north to drop off my niece at college.  I got the opportunity to meet various Parkinson’s advocates like Chris and John from Philadelphia who graciously opened their hearts and their homes to me and my family for an enchanting evening of conversation and entertainment. I also had the great pleasure of meeting two wonderful people Kate and Chris part of a great social media medical community of Health Union who not only have shared their passions with me but granted me an opportunity to continue my passion for writing about the things I love while helping the PD and migraine communities. Plus, I am super excited that my Spanish book on “living beyond PD” (Viviendo más allá del Parkinson) will finally be making its debut in the next 4 weeks. Plus, I am always completely at awe and stoked to be able to come to you in this humble way to share my life with you so as to provide a ray of hope and sunshine because no matter how strong we are we all need to be loved and cared for. We need each other because we all have days when all the digging and struggling only makes us more muddled.me chris and stephanie

However, as I have fallen many times flat on my face and risen again to fight another day, I have confirmed once again that having and living with a chronic illness like PD does not have to decrease our interest for living, succeeding and dreaming. Life is what you make of it -weather we live with an illness or not have Parkinson’s or something else we all have struggles, hardships, and traumatic events which can propel us forward to a better tomorrow or crush us if we let it.  I have been given the opportunity to travel to South Dakota to do a weekend retreat at an abbey for those who care for someone with Parkinson’s as well as for PD patients which will include exercise classes, and educational classes to teach other the skills of living well beyond their own limitations brought on by the disease.me john chris

Please don’t let the shock and pain you are experiencing g today make you numb for the rest of your life. Even if you got nothing left, find your purpose maybe start by reaching out to your neighbor or friend who has less than you. The storm brings forth character, integrity, honesty especially when comfort is removed. The first step in sorting g over or getting back up is up to us. So, don’t wait for others to rescue you first, rather make your first step in improving your situation and others will join in to help. Remember none of us can do it all alone or know it all. But everyone knows something, can contribute something to our lives. So go ahead and start small. Who care how it looks? Ask for help when needed. When I first began this journey I could not even walk had to use a walker then a cane. I needed help to do most activities including dressing myself. This is not a race or a competition but it is about being empowered and finding yourself  as you push through the darkness into the light as you find your purpose, your own passion that will make you defy all the odds and come out victorious. But the driving force can’t be just anything – it has got to be BIG enough, strong enough and powerful enough to propel you forward.

What drives you today to keep moving? Do you have the passion to go all in and fight as if your life depended on it because it does?

sources:

Be Inspi(red): words of Hope and courage 2007 by Hallmark Licensing Inc.

@Copy right  2017; all rights reserved Maria De Leon

The cost of Parkinson’s and other chronic illnesses…

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Although, fortunately the new health reform bill was turned down last night we as patients still face the uncertainty of what the future healthcare system will bring reform will bring. Thus, we strive to have members of congress understand what it means to live with a chronic illness and deal with the financial burden it places not just on the patients and families. More importantly, society as a whole can suffer if there is no assistance for the growing number of people living longer with chronic illnesses like Parkinson’s and Alzheimer’s, and cancer to mention a few. As I give thanks to God for the miracle of modern medicine and His Grace which has brought healing to my best friend, I reflect on the issues of healthcare. And as she begins her slow recovery from recurrent metastatic stage 4 cancer which was wide spread, I ponder not only on the toll the illness has left on her body, her family, the relationships but also the enormous financial burden it has placed on them after 8 months of hospitalization, numerous bone marrow transplants, labs, testing and the slew of chemotherapeutic agents not counting the number of specialists and other ancillary staff.  The toll that the cost of medicines takes on a family or individual can be insurmountable. Unfortunately, this is also a place where few people ever come back or recover from. Not only is the sudden realization that our health is not under our control but the daunting reality of having to live a progressive illness as many of us like myself lose their livelihoods and ability to continue working can be far too overwhelming.

The grave reality is that financial factors play a major role in patient’s use of medications and subsequently sadly the patient’s outcome with a disease process. I have seen this first hand as a patient, doctor and caregiver. Sometimes, we don’t think about the financial issues at the onset of illness since our priority is to get well; but as the disease progresses and the time from diagnosis extends, this is the most critical factor in a person’s long term outcome for which many of us are ill prepared and as physicians don’t provide adequate guidance and support. I summit that low incomes and poor finances along with lack of access to medicines and treatments is the number one cause for patients and families demise and dissatisfaction with disease rather than the lack of treatments. I have heard time and time again from both patients and doctors the frustration in their voices in regards to lack of coverage of much needed medications. Unfortunately because always have to revert to the “cheaper” treatments the options become quite limited and not always offer the best outcome.

As I prepared another talk about the 200 years of Parkinson’s and the latest discovery and treatments options I was reminded by the people in the audience to whom I have addressed in past conferences. Most elderly, Medicare on fixed incomes who cannot afford the luxury of paying  high premiums for newer medications even if they do promise  to be more effective, with fewer side effects or prolong quality of life decrease disability and so on.

Looking at other patients with chronic illnesses, especially cancer patients are at risk of filing for bankruptcy due to severe financial burden but what is most interesting is that those who file for bankruptcy in context of chronic illness are at greater risk for having an early demise. Un fortunately, I have seen it firsthand particularly those who are young and don’t have the financial stability that an older person might have from years of productive labor hence are more likely to forego treatments or seek alternate remedies as in the Hispanic communities because of lack of monetary resources and lack of access to health care because of poor or no insurance coverage.  And even when the chronically Ill are over 65 and on Medicare, the restrictions placed by an outside third party who does not understand the intricacies of a complex illness such as Parkinson’s can tie the hands of the healthcare practitioners. Forcing patients to use less effective treatments or older treatments or asking doctor to find the cheapest medication which in the case of Parkinson’s is levodopa/ carbidopa. Although it still remains the gold standard, 50 years’ experience has shown us that this medication alone is fraught with side effects when used as a sole treatment option increasing likelihood of dyskinesia’s and subsequent decline in quality of life.

We cannot allow our chronically Ill to continue to undergo increased financial toxicity due to lack of government support. We must stand up and ask our representatives to continue to provide support for those who are chronically ill and not remove benefits for those with preexisting conditions and improve access to healthcare especially much needed drug treatments.

Some of the questions you might want to have early on with doctor when diagnosed with a chronic illness is referral to social worker, and to lawyers  experts in chronic diseases for financial planning including long term care for spouses or caregivers.

When discussing medications ask the price but also price benefit ratio. Don’t simply ask for a cheaper drug which might result in more adverse effects causing more hospitalizations and more doctors’ visits or side effects than a more expensive medication which in the long run would be more cost effective to keep you stable and also avoid the inherent confusion many have by having different generic brands for same medicine. (In my experience, the varying colors and shapes of same medicine gets patients confused by making them believe they are different especially in the elderly).  Ask if there is a less expensive treatment option that is equally effective.

Are there any nonprofit organizations or community organizations that can aid with burden of Drug cost. Also inquire what about any drug programs from companies – different companies have different philosophies in regard to helping patients.

But also important to note that many drugs used in neurology to treat many non-motor symptoms are off label but widely accepted among the community physicians to treat certain causes but with the new restrictions of Medicare. Previously employed medicines maybe denied leaving you stranded …I am in a quandary at this point with one of my meds. Discuss with your physician have them appeal if denied or find other appropriate alternatives. Don’t just suffer because insurance denied or medicine is expensive.

Here is a foundation where some of you might find assistance Patient Advocate Copay relief -1-866-512-3861. Also look at NORD. http://www.patientassistanceprograms.com

 

@ July 2017 All rights reserved Maria De Leon MD

 

 

 

 

 

3 Rules to Avoid Confrontation with your Partner when Chronically ill: By Maria De Leon

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The good and the bad mix themselves so thoroughly in our thoughts, even in our aspirations, that we must look for excellence Anthony Trollope, He knew He was Right

Most of us marry someone who is our opposite which is what makes us work as a team by bringing different assets and points of views into the relationship. However, if 3 important rules are not established or discussed, as we get diagnosed with a chronic illness or as Parkinson’s progresses (in my case), there maybe a build up of resentment, quiet seething, and increasingly snide remarks along with looks that could kill if given half a chance.  So, instead of working as a team our contrasting ideas, and managerial styles can lead to friction which can pull us apart by making us feel alienated; as if we were working alone towards different goals.

I have seen this over and over in many patients and friends who both feel as if the other did not care when it fact both are committed to achieving the same goal- well being of the patient and stable, happy marriage. For instance, a wife after suffering a devastating illness in which she has practically been hospitalized for nearly 6 months has left her completely devoid of any will power physically, emotionally, and spiritually she is at the border of giving up from pure exhaustion. What she needs is complete rest and time to process everything she has gone though without anyone fussing over her. Yet, her fears are making her clingy and desperate putting her husband on edge. Husband recognizes depression and her need to talk to someone so he asks doctor for a counselor to help but she refuses the much needed intervention.  His managerial style is to find a solution to her beloved wife’s problem depression which is causing her to not eat and wither away more. After being by her side day in and day out through out the entire ordeal, he too is in desperate need of respite.

Sometimes because of different ways of approaching the situation it may appear instead to the other person that the partner has either given up or does not care. When these sentiments begin to build up inside of a relationship, especially one that has endured much already, is a sign that you are reaching a dangerous zone. A frustration like a patient refusal to adhere to doctor’s orders, or to loved ones wishes for their own well being as the case above, can spark a fire and unleash a fury causing at times a twenty year marriage to implode on itself. Then we are left alone to pick up the pieces  and deal with our illness at the same time through lenses of disillusion.

The epiphany– sometimes a feeling of neglect and betrayal we feel from our spouse is more about us than them. We have to start peeling the layers back one by one before we are confronted with our own insecurities and fears. This will lead to self discovery and understand what we are really upset about. Since, as Maya Angelou wrote “tragedy (chronic illness), no matter how sad, becomes boring to those not caught in its addictive caress.”  Thus, at some point in our lives we have to confront adversity all by ourselves. when you do, remember that Healing is a life long process which starts by being kind to yourself.  You must love yourself before you can love others fully. I pray that you discover this before you lose something more valuable. In our struggle to survive living with a disease or trauma which has greatly impacted our lives is to focus on the “cure” (be healed). Sometimes, sadly as it may occur with cancer patients or trauma victims, physical healing can take place only to expose our deepest darkest fears leaving us emotionally and spiritually devoid.

I have discovered that ironically the best way to heal completely and be free to live life to the fullest is to let go of the idea of finding a quick fix. The answers is not on the outside rather within us and it takes time. Many people go through therapies and treatments like yoga, bicycling, mindfulness, pharmaceuticals, acupuncture, etc. as if by partaking in these we will eventually reach a point where we can say I am finally – completely healthy and cured (from whatever ails us)!

Not so. This is not the end of the world or us for that matter. Not only is it okay to not be perfectly healed since it reflects life as it truly is- imperfect. We are a work in progress.

Instead on focusing on the bad- focus on the good and learn to compromise. Learn to let go of resentments and things that don’t nourish the soul, give you joy, or strength.

Remember, when dealing with an illness like in any relationship 3 rules apply:

#1 Neither one is going to be entirely comfortable all the time–  we are all unique individuals, thank goodness if everyone was like me it would be very chaotic. The pendulum is always swinging back and forth in any good relationship- is a give and take – if one person is always in control then there are bigger issues with poor boundaries that need to be addressed.

#2 Decide upon a philosophy to tackle the illness – this does not mean you are not free to make decision as the situation arises on the spare of the moment -simply means you have an agreed upon common goal-

#3 There can only be one driver at a time– I am sure you are all familiar with the saying “too many cooks spoils the broth.” But, in order to enjoy the drive whatever the scenic route may be, there must be trust that the person in charge of steering will get you to the right destination safe.

Now, you can start living life with the fullest not dwelling on the past, focusing on the future but living the here and now. embrace life do things because they nourish you, they make you a better person not because you are trying desperately to be healed. always be grateful for what you have and the people around you who are willing to stay by your side and support you and share your journey victories and defeats.

Have a blessed week everyone!Image result for Dancing Quotes About Life

Sources:

Spiegel Amy, “Letting go of Perfect: women expectations and authenticity.” Foreword Smith, Angie. B&H Publishing Group, Nashville,TN  2012

Harvey, Cig  (Aug. 2017): “Let it Go.” The Oprah Magazine, Vol 18 (8): 92-103

Copyright@2017

All Rights Reserved Maria De Leon

 

Fashion & Chronic Illness: Maria De Leon

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Fashion is a form of art. It is an outward expression of my inner self.  Just because  I have Parkinson’s and have had cancer, on more than one occasion,  does not mean that I  have to abandon my sense of style and neither should you!

Image result for images of quotes on art and fashionFashion is the most powerful art there is, it’s movement design, and architecture all in one. It shows the world who we are and who we would like to be.” Blair Waldorf

Just like Coco channel, ” I don’t do fashion …I am {and make my own} fashion.” however, when you live with a chronic illness like PD where sometimes there is not enough energy to even get dressed or get out of bed being stylish and fashionable can seem a bit trivial.

But, I say is not because when we feel the lowest that’s when we have to mustard all the strength in the world to paint our canvases that will shout without saying a word…I am still me and no matter how bad it seems I will not be defeated!

Ralph Laurence said it best, Fashion is something that comes from within. are we in the game or are we out? Will be surrender to live in a constant state of hopelessness and oblivion with our stretchy pants and pj tops or are going to be women who will find a way to rise pink boxing gloves in hand?

This does not mean you have to spend a fortune or dress up in formal apparel, it simply means that no matter what you will paint your own destiny with the things that make you who you are.

If you can’t do your lashes get fake ones cost very little to put on  and they last 4-5 days and you will feel fabulous. If eyeliner is hard to do, consider permanent eye liner. Get thick mascara brushes for lashes which can be applied easily in one stroke or vibrating brushes (Lancôme) which will help with the dystonia and tremors if fake lashes are not your thing.

God knows that taking a gazillion medications wreak havoc with our skin, hair and nails. when these look bad we tend to feel more self conscious and perhaps it might even aggravate our depression. But, doing our nails especially our toes can be more than a challenge. First, we can’t always easily bend to apply nail polish to our toes due to the stiffness.  If by some miracle we are able to, the tremors and dystonia make the paint brush strokes look like those of a 3 year old. Then if we manage to paint our beautiful little toes, removing the darn nail polish  can take an act of congress. My hands cramp and twist just trying to remove polish off one toe which is a work out in and of itself. Now that summer is here, we certainly don’t want to go out to the beach with our toes bear and poorly manicured, I know I don’t. Especially, given the fact that the medications can make our toe nails brittle and discolored on top of bendy twisty toes. I choose to put my best foot forward and splurge for a good pedi -cure with a good massage to the achy feet and legs. of course, you may choose traditional colors or even a bit of whimsy like I have this summer …going for some watermelon toes or a rainbow of pastels.Image result for watermelon toenails

But, if you prefer to do it yourself. There are a few options. You may wish to buy fast drying gel polishes which look great even if you mess up some plus they last longer ..but make sure to buy gel polish remover so you won’t struggle so much. Also because we are more susceptible to other illnesses when we have a chronic disease avoid using artificial nails which trap bacteria and can lead to fungal infections. Look  for water based polishes which are non toxic and  non- flammable-especially great if you will do some traveling this summer.  you may also wish to purchase those strip nail which may be fun to play with. you simply have to cut/ trim to fit your nail.Image result for strip nailsImage result for strip nailsImage result for strip nails

If you want to splurge a bit and have your nails look great for a longer time, consider doing shellac – comes in a rainbow of colors, which I love. But, under no circumstances should you file your nail bed before applying gel polish for shellac because it will destroy your nails for months. I just had mine done for the summer. Having manicured hands and toes makes me feel special and “normal” not like a chronic illness person.  This year I went for patriotic look -(sorry, a bit blurry)

nailsHowever, I would not recommend doing this method more than once a year. This requires the  use of UV light and those of us with Parkinson’s disease are more prone to having melanomas which does not exclude the nail beds. They do take more time to remove- but if you soak with non-toxic gel nail polish remover then place a cotton soaked in polish remover and wrap with foil for a few minutes, this will peel off easily. make sure you use vitamin e oil on your nail beds afterward and don’t forget to moisturize your hands nightly.

Now, that you are feeling almost human again having had a nice mani and pedi go out and frolic about and soak those sun rays which are full of vitamin D. But, while you are out there showing of your own personal style don’t forget the heat can be brutal for those of us with chronic illnesses. make sure you stay hydrated remember that even a tiny amount of liquor if you are craving for a margarita with a little umbrella can seriously interfere with your medications especially if you are tired,  and dehydrated as it did me the other day. Thank goodness for mom’s who are around to help out in times of need. A tiny mango margarita with barely a touch of alcohol did me, on my birthday, making me feel dizzy and putting me to sleep for the rest of the day. Although, the saltiness and coldness of it tasted good, the after effect was not worth the trouble. Guess no more celebrating for me. This 4th of July is water and sweet tea!

So as you enjoy your favorite activities of the summer – don’t forget to wear plenty of sunscreen, sun glasses and something red if cant think of anything else to wear and above all don’t forget to Image result for fashion quoteslove,

Parkinson’s Diva

Happy Fourth Everyone!!!!

copyright@2017

all rights reserved by Maria De Leon