Bridges & Scenic Roads: by Maria De León

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“Nothing comes ahead of its time and nothing ever happens that did not need to happen.” Byron Katie

As I sit here fighting another bout of bronchitis, yet again; I am inclined to feel a bit sorry for myself. But, all I have to do is stop and look at all the road I have covered over the last year to quickly shake this silly notion.

I have never been a very patient person especially when traveling. I like to zoom, zoom. I am a highway kind of girl. I remember the first time my husband and I took a trip toghter as newly weds to visit his family, he thought it would be nice to take the Natchez Trace Parkway. I nearly lost it; it seemed we had travelled for an eternity at a turtles crawl (can’t travel faster than 45mph). Had I been driving, I would have probably gotten several citations or found a way to get off faster than immediately.Image result for beautiful architectural wooden bridges

At the time, I was not interested in the beautiful sights we encountered along the way nor in the fauna present. I simply wanted to arrive at our destination. This was the state of my life at that time-pretty much rush, rush between work, family, commitments, conferences, etc.. I was always looking ahead at the next destination never really enjoying the moment for the most part until Parkinson’s decided to pay me a visit and make its self at home. Suddenly,  the breaks came screeching on putting a stop to all my senseless running around.Image result for beautiful architectural bridges of the world

Over the last decade, I  have had to learn to enjoy those backroads and not be so concerned about the destination. We all know that living with a chronic illness like PD  permeates into all aspects of our lives affecting everyone which comes into close proximity. thus, more than ever we have to learn to find a balance and enjoy each moment as it comes and not be paralyzed or fearful of what might happen next. Living with PD is truly unpredictable day to day and even hour by hour. Friday was another perfect example of this. I woke up feeling great attended a GO Red luncheon for women with my friend. We had a blast but by the  time I got home in the afternoon, I was out of commission screwing up all the evening and weekend plans.

Instead of worrying about reaching some obscure destination, or fretting over the plans that have been ruined (these days I prefer calling it altered rather than ruined). I have come to enjoy those unexpected detours along the way which may lead to unexpected finds like an old wooden bridge or a beautiful waterfall. These sometimes brief other times extended detours through backroads and scenic routes has helped me discover myself, my true friends, my family and many other people who suffer chronic illnesses which I might have not gotten to know otherwise. This weekend I got to enjoy the company of my daughter and husband although from a distance since I did not want to contaminate them.Image result for beautiful architectural bridges of the world

When I find myself feeling restless and impatient like today, I remind myself that those  eternally winding back roads are helping me build a bridge to my ultimate destination. As we know some bridges are short and some are much longer. Image result for beautiful architectural bridges of the world

Those bridges took years to build some even had to be rebuilt.  Meantime, i keep moving forward even if I feel it’s only one step a day. Someday my bridge will be completed and it will be a grand architectural monument just like those magnificent bridges, I love (e.g. Sydney Harbor Bridge, the London Bridge, and the Golden Gate Bridge to name a few).  My life like those grand architectural structures will stand as a testament of a victorious life which conquered adversity and overcame big odds to bring beauty and function to others.

Thanks to my illness, as my favorite poet Frost once penned, I have taken the road less travelled and this has made all the difference…

I hope today wherever you may find yourself, you find the strength and courage to enjoy those unexpected detours in life and beginning anew building those magnificent bridges.

@copyright 2018

all rights reserved by Maria De León

Need for Ongoing Affordable Access to Medical Care : by Maria De León

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I am a physician with many friends and colleagues still attempting to practice medicine throughout the country. It is particularly difficult for those who have chosen to remain in rural areas like the one I live in.  Due to the current hostile changes that have taken place in recent years, many physicians have been forced to move to the city to join academia.  Subsequently, we the patients are the ones bearing the brunt of the cuts and loss of specialist in many areas throughout the country.  With these changes patients are now forced to travel farther many miles to find a especially a specialist which believe me is not an easy feat to do as the disease progresses and also as our capacity to drive diminishes.

Moreover, those physicians who are truly committed to patient care and remain not just in the field but in areas where there is a need quickly find themselves overwhelmed, frustrates, on the verge of a burnout. Why ? I believe this one of the few professions in which the expert does not only lack autonomy but has to constantly fight with everyone to be able to do what he/she was trained to do and what he/ she deems best for the patient. No wonder 42% of all doctors are facing burnout and symptoms of depression, to make matters worst nearly 1/2 of those physicians are neurologists! With the increase in Parkinson’s disease, Alzheimer’s dementia, and stroke in the aging population, we simply cannot afford to lose any more specialists.

Not only do we need to continue encouraging the US Congress to increase funding for research to halt these diseases but also provide adequate compensation for physicians managing these extremely complex entities, as well as provide funding and make necessary changes to the laws so that we can have tele-neurology availability  independent of where the patient or provider lives in the country. This form of care is essential for those that are too sick to travel, unable to drive, or have no other means of seeing a specialist because non exists within their state. The need for tele-neurology/telemedicine has become more pressing than ever before as we have seen this past year as several major catastrophe natural disasters have left many people stranded and afraid and without their much needed medications and access to medical care. thus, increasing morbidity and mortality in the chronically ill.

Another way we can decrease the stress level in our specialist and healthcare providers is getting rid of unnecessary red tape/bureaucracy. One example of this is allowing doctors autonomy to manage their patients medications as they see fit. Nothing creates more work and frustration,  for both patient and doctor than having to waste valuable time in getting pre-authorization and pre-approval of medications which have not been altered in years due to patients stability. of course if i went much longer without medication, I would no longer be stable ! This happened last week when ice storm hit 1/2 of country. Subsequently many offices including doctors and insurance companies were closed for days.

Meanwhile patients like me who desperately need their medications to continue functioning could not get a refill or even purchase a few til doctors were able to be contacted because price of each pill was nearly $100 ($3,000 for month supply- who can afford this?). It took me 5 days to get my medication and that’s only because I am a physician who could talk to her friend and to insurance  review committee without having to wait for medical records and could sit for hours on phone waiting to speak to someone otherwise it would have taken much longer given the circumstances. Many times, however, people that are sick neither have the savvyness to know who to call or dispute claim and/ or they lack the time, and energy required to carry out such feats. All I could think was that many people (such as doctor, pharmacist) were wasting valuable resources on me  trying to get a medicine i have been on for a decade when there are people out there who truly needed help because they were having problems and physicians offices closed, etc. walking thehalls

Sadly, as the problems and complexities increase in the field of  neurosciences/ and incidence of progressiveness diseases like PD augment, doctors and patients will continue to be stretched to their limits until someone breaks from pure physical and emotional exhaustion. Thus, I encourage everyone once again to contact their Congressional Representatives to help improve not only our quality of life by funding research ( which will not only help patients but also  provide salaries for clinicians who are doing research), the Raise Act (passed recently to help caregivers with financial burden), and telemedicine. Without your voice demanding  healthcare changes, there can be no hope for patients with chronic neurological illnesses to live better, healthier lives while maintaining access to their own specialists.

Join in me in March In DC as we (MJFOX public policy forum 2018) make our way to Capitol Hill to advocate for these salient issues. See you there!

Sources:

https://www.medscape.com/slideshow/2018-lifestyle-burnout-depression-6009235

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all rights reserved by Maria De Leon

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

Adventures of a PD Diva At Girl Scout Day Camp: by Maria De Leon

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Seems like no matter what I do trouble always finds me. Benefit usually is a good story for years to come.

As some of you may know, I have been dealing with chronic upper respiratory infections and severe bouts of asthma and bronchitis since September. Each time I think is over – wham there it comes again! I feel like that mucus family shown on T.V, about some decongestant medicine, have decided to make my body their permanent residence with kids, in-laws and pets. My friend says is because I am too hospitable …so I have taken to sing Taylor’s Swifts ‘shake it off’ see if they decide to go and even added ‘somebody I used to know’ by Gotye. But nothing!

This chronic hacking and coughing is becoming a major inconvenience to say the least. A couple of weeks ago, I was asked to help out with Girl Scout camp as first aide – sure I said since my daughter was volunteering as well and I seemed to be back to my usual cheery disposition without a sign of infection insight. No later had I finished committing myself did I start feeling ill again. I thought this will pass by time weekend comes around. Plus not only do I enjoy an opportunity to be involved in my daughter’s life and activities especially since our time together is drawing near as she heads off to college soon; but I still have to drive to and fro.

However, the crud which has remained a mystery as to the cause was not letting up rather seemed to scale up a notch. I called the person in charge of event and asked to find a replacement, since I was not up to the challenge at that time. I was reassured this would be handled.

But as always this seemed too easy. The morning of my commitment to drive daughter (thinking I would just drop off and get back to bed) I was difficult to arouse from sleep having ingested more cough syrup with codeine. Many years ago when I was prescribed this only effect it had was making me have a very restful sleep with no further sequella throughout the day. Husband warned me that I may feel the effects longer this time- I should have believed him. Here I was listening to my daughter putter around asking me to get up because we had agreed on going to breakfast before camp yet I could not even oven my eyes or form cohesive sentence much less in English. Finally, after what I thought was only 15 minute of sleep actually close to 2 hours, my daughter’s frantic yells awoke me. I stumbled out of bed completely discombobulated unable to walk a straight line much less change. I seriously contemplated driving her in pj’s but I still had to steady my vision and equilibrium before attempting to drive.

Thank goodness for Center Island which helps me recline and hold on to when putting clothes especially pants. Already time constrained did not want to spend time searching for some stretchy pants so jeans it was. You all know that jeans are difficult to put on any normal day now imagine being bloated, nauseated, dizzy, shaky, and stiff? I was like a ball inside a pin ball machine bouncing all over the place.

Once on the road, I tried to focus but we missed the turn and made a few loops before we got to our destination. All I could think was getting back home and in bed.  But because we were late gates had been closed to the camp and daughter asked me to accompany her inside. On the way, we ran into the person in charge of the day’s events and asks who we were. – I said, ‘this my daughter with troop …’ not recalling number. The lady in charged proceeds to tell me she was waiting for Dr. Maria De Leon- the first aide-to arrive.  I took a huge gulp taken aback, thinking to myself why did I come? I should have had a friend drop off and why on earth was I still assigned to this duty?  I believe my shoulders and posture dropped even further down.

Why was this happening to me? I was having chills again, hungry dizzy, with severe cotton mouth which did not allow me to speak cohesively. Finally, I managed to ask, feeling faint, if they really needed need at that point? Of course my daughter having heard that they had not cancelled me felt bad but scurried away, not before saying ‘mom please be careful and take care.’ I asked for an hour wishing to take a nap crash. In reality I need to take rest of my medicines for my pounding head and neck pain and quiet the burning in my belly. So after getting medicines putting something in stomach grabbing first aid kit, water bottles and making a couple of sandwiches because I did not pay attention to message about whether or not food was provided by troop.  I managed to make it back to camp without missing turns this time.

After taking me to my station and handing me everyone’s forms I thought I was going to pass out. So I decided to get a bit of fresh air and go to the restroom. The closest facility looked questionable. So I decided to walk a bit further wishing I had my cane in this uneven terrain in my off balanced state. After using facilities, I see 2 young girls walking very deliberately with a fright in their eyes. They did not seem to be stopping rather proceeding to the exit. I ask what was wrong and where they were going. They said they went into facility, which I thought questionable, and there was a big black snake (only black snake I know is Black mamba) so they ran out. But, they really need to go to the bathroom.  I pointed them to restroom I had just used but they refused to go in without me to search first. Then they wanted me to catch the snake – to which my answer was there is no way no how- the ranger was called instead to retrieve. I walk girls to main camp where there is a congregation of elementary school girls screaming and coordinator is on top of table. Of course only one not screaming and front and center of all the action is my daughter! Figures.

More screaming takes place when ranger comes out with snake. I was trying to remain calm but kept looking all around. I did not want this to be the day I have to take care of someone with a snake bite.  Of course my friend who is an expert but nor present at camp said it was probably a water snake and not to worry because this was his home! I don’t care if it is its home or that is most likely harmless.  I still don’t want it around my legs.

The rush gave me a high for nearly the duration of the camp when I finally had to go lay down in my car for the remainder of the afternoon.

Next time I am not getting off the car or even agreeing to camping- for me roughing it is staying at the holiday inn.

My daughter and I passed out from exhaustion when we got home without saying a word to each other on the way back.

I am certain this will be another story we talk about in years to come.

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all rights reserved by Maria De Leon

Celebrating Caregivers Month Diva style!- By Maria De Leon

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” Don’t dwell on the disease, value the moments, the pearls of wisdom, their smile and humor.”

I have been most fortunate in having my BFF act as my caregiver. Ironically, I was her husband’s parkinson’s doctor for years and still continue to look after him from the side lines. but, when i was diagnosed and forced to close my practice due to medical issues, she was the first one to assume the role of not just my friend but also that of caregiver and travel companion. She often says she retired, the same year I did, to take care of me.

I suppose its a great symbiotic relationship. I provide levity, distraction, adventure and humor as well as advice in dealing with her own husband’s Parkinson’s of 20 plus years.

In truth, as many of you know it DOES take a village to care for a chronically ill person. She eases my husbands burden and I ease her burden. Although,  as of late since her knee surgery we have become each others caregiver.

Even though we have traveled together many times, this last excursion truly was the most memorable and fun.

Since I have gotten a bit more frail, I asked her if she would like to accompany me to my last meeting for medical writers in Orlando. However, as the day approached she also became increasingly physically compromised which made me wonder if it was a good idea to travel together. The last time I had taken a companion along, I ended up being the caregiver 24/7 which not only wore me out physically but mentally and emotionally as well. In my current weakened state, I was uncertain I could handle the task of caring for someone else. This is often what happens to many care partners, especially those that are older, when they become ill not only do they suffer but also the love one who depends on them.  (this is the time to ask for intervention and help from outside source such as respite care, a home aid, consider assisted living or temporary nursing home, call on other family members or close friends).

However, when both partners are willing to work together and rely on each other strengths, the stress of care-giving can be greatly diminished and might even end up having fun as we did.  So, we set out on an adventure thinking about our needs coming up with the best plan to maximize our well being and minimize any possible injuries and stressors.

start by formulating a plan- including expectations (this is not just for traveling or long term goals but day to day activities)

We knew we both had hard time traveling so we upgraded to comfortable seating in plane, we got a scooter for her and took a walker and cane in case either one of us needed it. I took all the medicines which could help with any incidentals- which by the way came in very handy when I got sick the second day.

Her scooter was great because, I did I not have to carry any bags which usually cause spasm in my neck triggering migraines. we took time to eat so we could take our medicines on a timely manner and rested when we felt like it. It was the first time i did not feel pressured to do or go because if she was tired and needed rest I rested as well and vice versa. Yet, we were able to enjoy nice dinners a day at Epcot and I was able to attend my conference while she rested.

We decided on the best mode of transportation – i.e. whose car was more comfortable for travel and who did best driving depending on time of day and physicality. She drove while I was sedated by medications. Also we considered time of day when we are at our best to take charge of situation, I am best at night and she in the morning- ease peace to divide responsibilities just as I do with my husband in caring for our daughter and other house responsibilities. { don’t try to do it all or go at alone- unless your spouse/ patient is completely incapacitated and demented, there are things that can be split up- giving them a sense of purpose and also allowing you free time}

So in the end, with open communication, realistic goals and expectations care-giving can be a bit less stressing and accept that there may be days when plans just have to be thrown out the window due to unexpected circumstances. (we both were so tired one morning, we decided to forgo early morning event we had scheduled.)

Despite, many physical impediments we manged to have a good time- even got our picture taken with a couple of Disney characters!

 me and chip
 jan and me

@copyright2017

All rights reserved 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. dysautonomia – ninds.nih.gov

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