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

Risk of Melanoma in PD in Women especially those of a Darker Hue. By Maria De León

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“The summer knows….”

In many parts of the world the heat index is beginning to rise making it feel like summer although summer is officially a few weeks away. Summer means freedom, happiness, ocean breeze, long days and sand between my toes. However, it also reminds me of the ways we must take care of ourselves to enjoy life to the fullest. Even though having sunshine is a great thing we must have balance like everything in our lives. Especially for those of us who have PD and are women are at higher risk by simple fact that not only PD increases risk of melanoma but melanoma is the second – most common form of cancer in women ages 15-29. Plus, according to some surveys it is increasing faster in our gender than in men of same age.

My very first experience as an intern of having to comfort someone with cancer diagnosis in their terminal stage was a young Hispanic man who was about to lose fiancée to metastatic melanoma. This was a devastating moment in my life as well since I had to pronounce dead someone who not only was Hispanic but of my same young age.
IMG_0709
Little did I know then that over the next few decades I would be diagnosed with melanoma a few times already? Fortunately, all 3 times have been caught in first stages where resection was all that was required. However, as a doctor I know that having a history of certain cancers like melanoma are always something to consider when new symptoms arise for these cancers re highly malignant and can spread to almost any part of the body particularly the nervous system.
Now that I have PD, the risk of developing melanoma is greater for me and all people with PD. but, especially for those who have family and personal history of the same. Sadly, for those of us who are Hispanic (who by the way have higher risk of PD) have a higher rate of developing melanoma than two decades ago. Apparently, those of us who have darker skin tone need better sunscreens or perhaps need to begin applying sunscreen. There might be a misconception in our culture that not having pale skin somehow protects us from skin cancers but nothing is further from the truth. Melanin does offer some protection but not nearly enough. IMG_0818

I for instance I don’t tan, I simply burn with minimal exposure to UV rays. I discovered this purely by serendipity one summer at the beach. I had applied sunscreen to my shoulders and face primarily, as most Hispanic women tend to do, but never reapplied by that evening I was swollen like a big toad primarily in my face with glistening puffy water filled bags under my eyes and swollen lips almost disfiguring. Never mind the pain, I was glowing like I had received some form of radiation where even my hair was three shades lighter with only a few hours of sun exposure. This is when I remembered how my grandfather always insisted I wear gloves, hat and long sleeves in the sun…why had I not listened this time? Too busy being young and carefree. For weeks later I simply peeled.
Now even though I love the sun and beach I make sure I use the necessary protection. However, many minority women have not taken heed of the dangers of sun exposure. Plus the fact that among Hispanics, blacks and Indian women melanomas tend to occur in inconspicuous places not usually exposed to the sun. As was my case 2 out of three were not in sun exposed regions of my body. I also lost an Indian friend at young age due to metastatic melanoma which had started in her groin area. Thus by time of detection it had already spread.

Subsequently according to the Journal of the American academy of Dermatology nearly half of black women and a third of Hispanics are diagnosed with this disease in late stages compare to less than a third in white women. Thus fatality is higher in these groups. The question remains is there a biological difference in genetics causing greater risk? Perhaps! But the presentation in soles, palms, and nail beds make it harder to detect, diagnose, and treat appropriately for many doctors might not think melanoma since not directly exposed to sun. Here again the question of healthcare disparity comes into play. Are they going longer without diagnosis because of poor access to care or physician bias? Much more research is needed in this area.

The truth is that we all need to remember to use sunscreen to protect our skin from harmful UV rays especially if you are in the minority groups.Perhaps using sunscreens that leave our skins white and pasty might not be an appealing thing rather serve as a deterrent to many since it is aesthetically unpleasing; especially for those of us who have darker skin. Of course the best sunscreen is one that is used regularly!
Fortunately, the cosmetic industry has taken notice of the need for diverse products which can be used by various groups. Besides sunscreens many cosmetics now have an SPF protection.

How to protect yourself and diminish risk of melanoma:

We may not be able to do anything to avoid getting PD or other chronic illnesses but we sure can do something to prevent skin cancer.IMG_0857

• Use Cosmetics with SPF protection
• Frequent skin checkups especially in winter and in the nude – whole body, if no insurance visit aad.org for list of free SPOTme skin cancer screenings in your state.
• Self-inspection especially of inconspicuous areas – ask partner to help
• Wear gloves if driving in sun
• Use SPF protective garments like bathing suits/hats
• Avoid shellac use of nails routinely because this is applying UV light
• Avoid sun tanning (tanning booths) use instead bronzers than can be sprayed or applied. Many cosmetic brand s offer great products
• Don’t forget your eyes? Wear shades with UV protection
• Apply sunscreen vigorously multiple times don’t forget toes, hands and feet. Must have one with zinc oxide, also avobenzone and oxybenzone but these can be greasy. Look at screen stars which can be friendlier to women of darker skin color
1. Apply one ounce of SPF 45or higher (minimum 30) enough to fill shot glass or golf ball size at least 30minutes before going outside or in the water
2. Reapply every 2 hours or immediately after heavy perspiration or swimming

• Use moisturizers like oil of Olay (my favorite) or Neutrogena both which have SPF.
• If you are a woman with dark skin watch out for sore that won’t heal, patches of rough and dry skin (sounds like I have to go to dermatologist asap), watch for dark lines around finger and toe nails, look for spots on hands, feet, lower legs, groin, mouth, lips buttocks and scalp.
• Hydrate, hydrate, hydrate
After being in sun use some aloe Vera sap all over the exposed body this is soothing and healing.

Have a lovely summer! Soak up the sunshine but don’t forget to be good to yourself and your skin…you will be grateful you did.
IMG_2288

Source:
Douglas Deborah. (S.O.S) the Oprah magazine June 2018 9(6):109-113

@copyright 2018
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