Could a cluttered life and house be a sign of poorly controlled symptoms? By Maria De León

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“It’s not clutter, is my unique filing system.” Jonathan Lockwood Huie

Have you ever noticed that when we are ill we revert to doing the bare minimal which means basic survival activities.  No make -up, no color coordination with our clothes. We are lucky to even shower and get dressed without passing out or exhausting all of our energy.  I had been feeling so run down that I had neglected my writing not to mention my home.

Who cares if the clothes are not put up as long as they are clean and folded? That alone took an act of congress to do (ha- given present circumstances in Washington that is saying a lot!)

Recently, I went to my PCP because I was finally feeling like myself and was able to drive myself there. I proceeded to tell her about my last several month’s ordeal with all the specialists I had seen along with the myriad of tests and treatments I had had. Much to my chagrin, all she wanted to know was if I was doing anything to exercise and lose weight. Granted exercise is a way to maintain our illness in check and prevent us from deteriorating faster. However, before one can exercise one must be able to have enough physical strength to even move, shower and do basic hygiene. Here I was proud I had been out all week after several months of feeling like a recluse. I had actually dressed and groomed without any problems like a normal person would.  I was even wearing with make-up once more, had a nice hair do and jewelry on. I was back!

But my triumphant attitude was quickly deflated by my physician’s lack of interest in the fact that I was looking well.

Chronically ill patients due to their illness have a lot of ups and downs and our goal should be to have a smooth course with our illness avoiding as many ups and downs. Our jobs as patients is to work with our health professionals to smooth out those bumpy roads. However, if our doctors don’t acknowledge a problem we are going to face greater challenges. So we must learn to speak up and ensure that the message is getting across about our difficulties with essential activities of daily living.

I think sometimes we as physicians miss the trees for the forest. We should really begin by asking basic questions like are you able to dress yourself in a normal fashion – never mind the falls, choking, dizzy spells and so on. What does your home life look like? Have there been any changes lately?

Heck yes!

Over the last 6 months not only did it take me hours to do basic hygiene leaving me exhausted and often needing a break before, during and after but also neglecting non- essential house duties.  As laws of thermodynamics dictate the world tends towards chaos it takes energy and constant work to keep organized and tidy in our appearance as well as our surroundings. Those of you who have kids or grand kids know this. You barely finish picking up the toys, shoes, coats etc. and before you it, as the kids go by thunderous swoop, the room is once more untidy and disheveled. Needing order once more. But what happens when there is no extra energy to do these basic cleaning activities- clutter begins.  

As a neurologist I was taught to think as hoarding as a mental illness very often a sign of dementia but perhaps we need to look at degrees of untidiness as a sign that things are amiss and underlying illnesses are present or not well controlled.

I have always prided myself as a very tidy and neat individual except in my work space which has always been cluttered with all sorts of things that inspire me or interest me. However, over the last year as my health has been more precarious my neatness has fallen somewhat to the way side. At home, I have slowly begun to accumulate things that I simply had no energy to sort out on any given day. Meanwhile developing a few pile of objects in various rooms of the house. This was not because I did not care or liked the mess or did not want to clean I simply had no energy to do the basic things like take care of my daughter, going grocery shopping, cooking, paying bills, going to doctor, tending to my mothers and my own medical needs. I simply said tomorrow I will get to it and next day came I was equally exhausted and worn out and something more pressing took my limited energy.  So either you like me learned to ignore it or are just too tired and sick to really notice.

Funny thing having a cluttered house during poorly controlled illness is like when you been sick for a time and can’t seem to get enough rest and spend most of the time lying in bed finding it very comforting and soothing.  But as soon as our bodies are restored the first thing we want is out of bed! When our chronic illness symptoms are restored we want order back in our lives!

I knew I was back to “normal” when I realized that the things that had not bothered me for nearly a year we’re now demanding my attention. Screaming in fact. So I have decreed 2019 the year of de-cluttering!

But now I know that when the clutter begins if it does again I won’t wait a year to get help with my symptoms because this is the first sign that something is amiss! I hope you do the same. Talk to your doctor if this is occurring.

@copyright2019

all rights reserved by Maria De Leon

Developing a New Vision for the New Year!By Maria De Leon

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“Where there is no vision people will perish.” Proverbs 29:18

This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctors’ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinson’s (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinson’s diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test …I have learned that in life like in science nothing happens overnight. We must learn to wait on God’s time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples life’s better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you don’t give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus Test…We can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- “I can & I will”

So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.

Happy New Year to all my friends, families and followers!

@copyright2019
All rights reserved By Maria L. De Leon

PD & the ‘Kamehameha Effect’: By Maria De Leon

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Have you ever heard your loved ones complain or say that when you are up and about in public you seem different? They may describe you as lively, happy, and energized but moving better even. However, they gasp, as my husband often does, asking why can’t we simply have that kind of motivation when we are at home rather than just sit around like bumps on a log?

Not long ago when my family and I traveled to Hawaii for vacation my husband finally put a term to this positive effect of well-being that ensues when confronted with something utterly delightful to us. The ‘Kamehameha effect’ as my husband lovingly has coined it, is the end result of a natural boost of dopamine in our brain’s when confronted with pleasurable, enjoyable things. After hours of touring the island, there I was barely able to walk, shuffling, feeling stiff all over particularly in my lower back which was beginning to hurt down to my feet. I was choking on my own saliva and was beginning to lose my voice. When suddenly we came upon the current Supreme Court of Hawaii – also known as Aliiolani Hale building which has in its courtyard a statue of King Kamehameha I which is facing Lolani Palace. At the site of this grand structure I became so ecstatic since it happens to be the headquarters of Commander Garret and his Hawaii 5-0 unit. Seems like within minutes, I was no longer stiff, shuffling or choking. Husband was astonished at the effect calling it the ‘Kamehameha effect’ and still teases me about this every chance he gets. IMG_1866

He insists that this effect is purely is psychological and wishes I could summon it at will. However, although it has a psychological component is not that easy. It is instead a chemical reaction that takes place in our brains once ignited by exterior forces. The ‘Kamehameha effect’ is one that can be seen even in groups of Parkinson’s people at the same time if united by same outside force as was the case in New Orleans when the Saints won the Super bowl in 2010. According to Dr. Georgia Lea, a neurologists and assistant Neurology professor at the Oschsner Institute in NOLA, that during the super bowl championship all her PD patients who were fans of the SAINT’s suddenly were cured for hours to days!

This is the ‘Kamehameha effect’ at its core – ignite our own happy endogenous neurochemicals to bring forth dramatic improvement in our PD symptoms.
Although, this effect is not a switch which can be turned ‘on’ and ‘off’ at will, there are things we can do to promote the repeated occurrence of this phenomena by doing things which brings us joy, passion, love, gratitude and satisfaction. As one of my favorite literary authors Gabriel Garcia Marquez would say; “there is no medicine to cure what happiness cannot.”
Go ahead find your passion and unleash the ‘Kamehameha effect

@copyright2018
all rights reserved by Maria De Leon

What I have been surprised to discover while living with Parkinson’s disease? By Maria De Leon

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The other day, I dreamt of God above – He smiled and said: ‘don’t worry, your faith is strong; you know you have been here before. Just gaze upon my face and everything shall be alright.’ I smiled at HIM and softly uttered a broken Hallelujah! – Alleluia. Alleluia
Although, my faith IS strong and has grown immensely over the last decade somedays it seems that the dark clouds in life want to hang on just a bit longer than usual putting all our beliefs to the test.
This seems to be the case for me over the last month.

So, I had to remind myself of how far I have come and all the challenges I have endured in the past which have only served to make me stronger. I like to think of the peaks and valleys we have gone through in our life as a mechanism to help us get through things faster and with greater ease. (Just like the brain network is connected via myelinated sheaths which help disseminate information quicker from one area to another- if we would interrupt the myelin, information would surely get delayed and we might even find ourselves stuck. Such are our past experiences, the more we have overcome the greater ease we have of moving forward…)

I have learned that God is strongest when I am weak.
I have learned that I am much stronger than I once thought and much more resilient than I ever gave myself credit for. I thought I would never survive the first diagnosis of a chronic illness, nor giving up my practice. Yet, here I stand …
Despite years of trying to hide my physical flaws, I have learned to embrace those blemishes, scars, and all. I have learned to focus on my most attractive features which are my smile and my “Spanish” eyes.
I have learned to love myself strengths and weaknesses. After all beauty begins when we first decide to love ourselves. At times, we must learn to turn our weaknesses into strengths. For instance, once upon a time I was extremely shy and afraid of speaking in public (hard to believe I know). I would become paralyzed with fear of being judged. These days however, I embrace it fully. Public speaking has been a source of great joy in my life as I seem to have become the voice for women with Parkinson’s disease and other chronic illnesses.
I have learned that we all have the inner fortitude to do what you could not do before- I am learning to wait in silence and developing beaucoup patience!
I have learned that you will feel what you did not before- sympathy, empathy, kindness, love, gratitude…
I have become knowledgeable on things I never knew.
I have also learned that inner beauty never fades.
I love being a mom.
I am creative after all.
I am a trendsetter and fashionista at heart.
I am excited about living life to the fullest.
I cherish my time with my girlfriends.
Beauty and inspiration come from places we least expect.
All women are strong beautiful and able and we were fiercely made for a time such as this.
So go ahead find your passion and bring out your inner beauty by discovering new horizons and gifts within yourself. Despite what you may be facing today- you are not alone, you are loved, and this too shall pass! You just have to hold on long enough and keep the faith.

@copyright2018
all rights reserved by Maria De Leon

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

copyright@2018

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

 

 

“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

Perils of Fast & Furious – Life with PD: by Maria De Leon

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In life some people trip and some fall but some take that trip and make a beautiful dance out of it.Sometimes, I feel like everything is just going too fast with my daughter nearly finishing high school and my only nephew applying for master’s program while my oldest niece heads off to college. I remember holding all these babies in my hands thinking I could hold them forever in my arms. Now, although I am happy and proud, I just want time to stop and enjoy all of it. Why can’t time have Parkinson’s? Wish it would crawl like molasses as my body often seems to do when I want so much to move faster. Wish time would have a bit of memory loss, as  I often do after taking my amantadine, when it comes to the bad days and freezes during the moments of  sheer joy like when I listen to my daughter play the piano and marvel at her talent as she plays one of my favorite melodies-Nocturne. But, alas as much as I would like time to develop PD it would have none of it. However, it has become my friend showing me the beauty around even as my disease progresses and seasons change – there is always something new to behold,  and learn from.

So has been my life this last month,  I thought that once my practiced closed I would feel a void in my life. But, rather I have discovered new activities, skills, talents, and friends I never imagined that I would have all thanks to living with PD.

In my role as ambassador of PF and activist for all people with Parkinson’s, I got the opportunity to have several interviews nationally to raise awareness in the Hispanic community as we celebrate 200 year anniversary of the “Shaking palsy” publication.

No more fast paced times have I had than during these days of interviewing sitting by my phone starting way too early for me and my meds to kick in- fortunately I did not have to go further than my bedroom. one talk after another and another- feeling my words begin to slur as my mouth became thick and dry and hypophonic (low voice) as the effect of  the medication wore off quicker than usual due to the high mental activity. The days went by in a blur compounded by other responsibilities and activities, I as a mother have. Two of my favorite stories which will live in my memory bank forever that occurred during this crazy period are as follow.. which will forever cause a big smile.

My daughter was to sing in the choir at church, I was spent from all the awareness activities and radio show talks that I could barely move and my neck was in a state of complete spasm from talking on the phone for hours. The cervical dystonia invariably triggers a wave of migraines which usually I can abort but not this week when I needed most because the insurance had refused to cover my Maxalt which I have taken for years and the medicine I was given to replace only caused my head to hurt more. There I was with severe migraine throwing up and stiff as a board trying to get dress in a hurry. No can do my body protested. But, I must get ready and attend my daughter’s performance I insisted despite by husbands better judgment, of course I should have listened because by the time we arrived we only saw her leaving the stage.

The second scenario-came about in the middle of the week in the midst of a hectic schedule which include teaching. A friend associated with a group of women I teach left me a voice mail saying there would be a get together and would love for me to attend the following day at noon. No more details or at least I did not hear. The following day  after completing all my morning activities, I realized it was almost noon. I did not want to let my friend down since she insisted I come. But, having been on the computer and phone since 6:30 in the am I was in no way ready to socialize. The dilemma was go all grungy an hope to get there on time or make effort to look presentable knowing full well I would be late. Realizing lunch was being held at a place usually considered a bit more upscale I opted for the latter – thinking this was an informal get together. I arrived late of course and entered a room full of  well- dressed women seated at tables with fine china and cutlery. I nearly retreated but the host caught a glimpse of me and said: ” I am so glad you made it. let me show you to your seat which had my name inscribed on a card.” this was an etiquette luncheon! First faux pas – do not show up late! but, thank God at least I was presentable! after a very enjoyable lunch and fellowship which extended way longer than I hoped for (and could not leave early since I was already late too begin with) I had to sit getting stiffer and more antsy since I had another meeting to attend and the time for this to start was beginning to draw near.   I am still not sure as far as etiquette if would have been better to not look good but be on time or arrive late looking fabulous!  This week back to my slow crawl pace – till next adventure. In the meantime will try to catch up on some reading curled in my favorite diva couch!

Happy Week to everyone!

Art By Ross Webb

copyright-2017

All rights reserved – Maria De Leon  MD

Perils of Parkinson’s disease : By Maria De Leon

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“When you face the perils of weariness, carelessness, and confusion; don’t pray for an easier life. Pray instead to be a strong man or woman of God.” ~Luis Palau

The longer I live this illness and work with people who have this disease in their lives whether be a patient or caregiver, the more I realize that when you wage war (in our case against PD) there will always be casualties and unfortunate collateral damage.

The last couple of weeks have been particularly hectic for me trying to juggle family, friends, teaching responsibilities, writing my second book, my mom’s sudden illness, being in a small collision accident, repairing car, and to top it all off- MY OWN ILLNESS!

Any given day can be terribly exhausting requiring some flexibility on our parts in allowing ourselves the time needed to reenergize to keep on tracking. However, there are days and even weeks where life comes at you from all directions and there is no rest for the weary making the recovery when things finally let up that much longer and painful at times.

As I have learned, life does not stop just because we do. Two, just because we have energy and are ready to go does not mean that the people who are close to us are ready to do the same. this can create some resentment on both parts. dealing with these mixed emotions and feelings can be a bit tricky. Sometimes we have to learn to do and go alone although we would prefer some company. We must utilize the little energy we have to accomplish the things we must like caring for our families and then if we have left over energy if someone else wants to come for the ride greeeaat!  if not perhaps next time. We must convey this sentiment to those around us so there will be no hard feelings. In this case, communication is of the utmost importance.

However, there may be times when you find yourself at a loss and having important people walk away from your life because they don’t get your illness. They make undue demands on your time without allowing you flexibility to still maintain a healthy relationship. For instance, one of the biggest problems my PD has caused is being unable to commit to things very often. I do so very hesitantly and when I do I allow myself maximum time as possible to rest before and effort to gather strength to accomplish task. But, life does not care about our commitments, unexpected things will happen which will push us over the edge and sometimes the greatest of intentions go out the window.

Those that are closest to me, have understood this and know I am not always able to keep up so if for whatever reason, I cancel or cant make a commitment they are ok with it without judgement. plus, we all know that sometimes our dystonia’s act up, our voices fade, and our fatigue levels  maybe through the roof and all we want to do is hide under the covers. All these things can fluctuate hour to hour, one of the things I absolutely hate the most! I can be all perky one hour and feel crappy the next so when I say I will call you or hang out later I may not be able to because of illness plus unexpected family drama comes into play as it invariably does in any one.

How do I compensate? I text friends a lot to let them know I am still there for them. with my family I use the same approach as when I travel rest well before I travel to see them and boost my doses of medications to have enough energy to give them my undivided attention whenever possible. (For my husband an daughter since they are home in the evenings I try to make sure I rest well especially if I know my daughter has events afterschool or my husband is working long hours and I have to take care of things longer). When I can, I call or visit; but sometimes this is not enough and issues surge because the other person feels neglected and unloved and may even choose to walk away from your life. This is what I call unfortunate collateral damage because all I was trying to do is fight this disease to keep going while minimizing outside contact at times in order to ensure my survival and ultimate victory.

So sometimes marriages end, long friendships die, and people you thought would be there forever move away. This unfortunately, is the price we have to pay sometimes in order to keep breathing and fighting. As long as you have tried and done all in your power to show those you love how important they are to you, there should not be any regret. May still have feel heart ache so Leave the door open …in case they decide they did want to be part of your life after all and stand side to side with you in the fight against PD. So don’t be afraid of losing something good because you may gain something better! Your inner peace…

 

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We stand today on the edge of a new frontier …
a frontier of unknown opportunities and perils –
a frontier of unfulfilled hopes and threats.
– John F. Kennedy

copyright-2017

all rights reserved – Maria De Leon MD