How to Overcome the Fear of Failing Care giving: By Maria De Leon

What enables a general to conquer and achieve things beyond the reach of ordinary men is foreknowledge” Sun Tzu ‘The Art of War

Over the last month, I have read and heard much about the needs of the caregiver, the fears of the future for both the patients and caregivers as well as the stresses of living with a chronic illness imposes on a family, a spouse and a caregiver who may also be frail, infirm or elderly.

It is one thing to care for a loved one or spouse when the caregiver is young and healthy and is another one all together to provide care when the caregiver he or she are of advanced age with less energy, stamina and resources.

I have been struggling with this notion more in the last several months as not only my disease progresses but also as various members of my family including my own caregiver have become ill. I wonder if I will have the fortitude to handle and rise to the challenge.

The answer is YES!

First, I have found that where there is a will there is always a way! This does not mean that the journey will be easy or without challenges simply means that God never gives us more than we can handle. Nothing last forever! All pain and suffering and struggles eventually pass. We must learn to ride the storms bend without breaking.

Second, we should not allow fear to paralyze us and keep us from enjoying the present or being derelict in our duties and responsibilities. This however, does not mean that we throw caution to the wind and live only for the moment without planning for future contingencies.

We all have felt at one time or another like our strength and care giving skills were sub-par. Yet, what invariably happens is that when 2 people in a relationship are sick one will always assume the role of the caregiver while the sicker, weaker individual recovers.  This means that for a time one person has to put his/her needs aside to care for the more person with the more pressing medical issue as in the case of a friend with PD who suddenly was thrust into the caregiver role when his wife (the usual caregiver) had surgery, or another one who had to mustard strength to deal with spouses cancer despite their own medical problems.

In order to facilitate care and decrease stress, guilt, anxiety and fear I recommend a few things.

#1 do not let fear become a stronghold. You and I have the power to say NO and not continue with the negative thoughts that will lead us to desperation – mainly because is not healthy. Plus, I have found that our worst fears usually don’t happen rather it is the unexpected that hits us like a freight train. So why waist energy and worry over something that probably will never happen.

#2 decide in advance what it is that each partner needs or wants done when illness worsens- are these desires plausible, feasible and achievable within the confines of the relationship.

#3 make plans in advance for specific contingencies like what if the caregiver needs surgery and patient who will now be provider is unable to carry out that responsibility talk to support groups religious and otherwise for assistance, speak to the physician about having patient stay in a facility longer or be admitted together or send social worker and other ancillary staff to the home to help prepare meals or help with house chores. Doctors and social workers along with other health professional are there for you to use in times of undue stress. You should not have to go at it alone. Involve friends, neighbors, relatives to assist with specific needs like transportation, sitters, etc. Medicare often pays other family members to become caretakers. In some cities there is free transportation for sick and elderly like New York and some have free Uber services.

#4 for the future- meet with financial advisors, purchase long term disability insurance, decrease gap in distance between care giver and person with PD, down size before problems arise, have OT evaluate home for safety and accessibility for those residing within. Think about access to physicians perhaps moving closer to university centers would offer peace of mind.

#5 don’t neglect your health to care for the other person. Think about how much more the person whom you care for will suffer if you are no longer able to care for them.  Being prepared assures us confidence! But relying on God gives us victory!

@copyright2019

All rights reserved by Maria De Leon MD

Soaring Neurological Retail Prescription Drugs: By Dr. De Leon

As I have battled with Parkinson’s disease and my illness has gotten more complex so have my challenges in obtaining medication. I am sure I am not alone in this. Every time I go to the pharmacy as of late, the joy seems to be knocked right out of my soul for at least an hour. I have to brace myself and be in a sound state of mind to be able to navigate through all the hurdles a routine visit to the pharmacy can pose. It used to be that I could just call and have my prescriptions delivered to my office/home no questions asked. No let’s see if your insurance will allow it nor let’s see how many pills insurance will allot this time around. Each time, I step into the pharmacy, I wonder if the quantity be enough to cover my needs?

While I was practicing prior to Medicare part D (intended for patients to have better access to treatments they needed) patients had greater access to treatments even those that were costly in the form of subsidy programs, samples and other pharma assistance programs. However, with the advent of Medicare part D many of these programs disappeared, at least in my area, leaving patients high and dry without medications for months at a time. The reason being the soaring price of medicines which typically places a patient into a ‘donut hole’ (where insurance does not cover cost of medication). In some cases, this period can extend for months, as it does me. An estimated 17% are said to skip doses or stop treatment all together because of cost.

With the advent of the Affordable Care Act I found myself, like many others with chronic neurodegenerative illnesses, forced out of plans.  As the number of medications began proliferating, due to my Parkinson’s diagnosis, I had to start allotting a good chunk of time just to visit the pharmacist (at times it is almost as lengthy as a doctor visit!).

All the while, as I stand there at the counter arguing yet again about the importance of getting my medicines on a timely basis, I see person after person of all ages and walks of life get the same comment…”Sorry, your insurance did not approve this prescription,” “you must get authorization from your physician first “or my favorite “if you want it costs such and such you have to pay…usually an exorbitant price and rarely for a full months prescription, which no one ever seems to be able to afford!  The great majority of individuals have a sinking saddened look as they walk away from the counter without their much needed prescriptions others like myself may have a sudden rise in blood pressure causing severe head pain.

 In the last several years’ retail prescription prices have increased six times faster than 1.5 % inflation. This is according to the new AARP Public Policy Institute (PPI) report. Even the prices of so called generic drugs has escalated to the point of being more expensive or as expensive as  ‘brand name’ drugs, one such example is Rasagiline (Azilect) . The average annual prescription cost has reached new heights of over $11,000, which according to the experts is nearly 75% of the average annual Social Security benefits. This is madness!

If these trends continue people are simply going to stop taking medications which are no longer affordable increasing the taxpayer’s burden in the long run. This is because as I have experienced many times as a practicing physician as well as a patient when the appropriate medications are not given or taken routinely due to financial constraints there is a subsequent increase number of institutionalized in our case Parkinson’s patients due to worsening of symptoms including falls, strokes, hypertensive crisis, along with pain, aspiration pneumonia’s, and cognitive status changes.  Other times, as I have recently experienced, when medications are altered to save insurances money, patients end up suffering needlessly and in the long run also end up costing not just insurances but inflict a monetary burden on patients as well. This is not even taking into account the time along with emotional distress caused on the entire family.

Placing a system of check and balance on the rising cost of medications is long overdue. Currently the rise in cost of medication is the fastest growing over any other health cost according to US News report of December 2017. To make things worse the drug cost in neurological illnesses like PD are disproportionately high. Medicare drug expenses for neurology has an annual spending of roughly 5 billion, the fourth highest in Medicare drug expenses. The hardest hit are those on Medicare and Medicaid due to Federal anti-kickback Statute, which prohibits pharmaceutical companies from offering shared assistance to beneficiaries of government subsidized health plans. With the majority of PD patients being on Medicare including younger patients due to medical disability this can be a great deterrent and challenge for many.

However, there are a few things we can do to ease our stress and burden in obtaining necessary medications:

  1. Be vocal- self advocate – let your needs be known to affect change. Talk to your lawmakers about the challenges and need for changes to health care to truly make affordable and accessible to all who live with PD. For me, this has been my biggest coping strategy. Although extremely time consuming at times for the most part it ensures I maintain a constant supply of medications.
  2. Team up with a clinical pharmacists, social workers and doctors to find the BEST treatments keeping in mind your personal financial situation. In my case having a clinical pharmacist through my insurance has been of little service. However, having my personal designated local pharmacist has been a great asset. Further, my biggest advocate and key team advisor has been my own MDS who advocates on my behalf continuously and provides me with the necessary medications and authorizations in a timely fashion. (She Rocks and I am extremely grateful for her). Some of the questions you should be asking yourself when discussing options with doctors, pharmacist, insurance etc. How many side effects, drug trials, and out of pocket cost am I willing to tolerate before I become proactive or vocal in demanding or asking for what I need? Do I have a choice and will I allow substitution of medications for a cheaper alternatives which may not be in same class as the ones I am taking. Can I pay extra to reduce or cut ‘donut hole’ altogether and are there supplement insurances or programs I can qualify for to aid in the cost of drugs?
  3. Consider generics only when available and appropriate keeping in mind there is a difference – but if you decide to stay with generics remember to keep same generic each time. Plus, if you get generic initially and do not get a positive response before discarding medication try a different generic or even brand ( highly recommend) to truly know whether it works or not. For instance, some drugs like Neurontin (gabapentin) do not work as well for tremors as brand name – this is years of experience treating patients with tremors.
  4. Use resources like national organizations to find assistance.
  5. Use additional resources like pharma assistance programs/NORD

 Remember that the solution lies in all of us working together for better health.

References:

Melville, Nancy. “Soaring Neurological Drug prices: How docs can help” (Feb. 17, 2019) Medscape Neurology

The facts about rising prescription drug cost. https://www.csrxp.org/…/2016/04/CSRxP_Facts-of-Rising-Rx-Prices.pdf

The high cost of rising drug prices. https://http://www.usnews.com/…/the-high-cost-of-rising-drugprices

@copyright2019

All rights reserved by Maria De Leon

Los Tulipanes Rojos: Símbolo Perfecto By Dr. De Leon


“Un tulipán no se esfuerza para impresionar a nadie. No batalla para ser diferente de una rosa. No tiene que hacerlo pues es diferente. En el jardín hay lugar para ambos…por lo tanto solo esmerence en ser sí mismos, en hacerlo no podrán evitar brillar.” Marianne Williamson

Al celebrar nuevamente el mes del Parkinson al nivel nacional y mundial, quiero reconocer a todos aquellos que viven y luchan con la enfermedad diariamente. Se estima que habremos aproximadamente 1.5 millones de habitantes en nuestra nación que enfrentan cara cara esta condición neurodegenerativa la cual a veces nos pudiera robar las fuerzas, los movimientos precisos, el balance, el sentido del olfato y hasta la memoria pero nunca el espíritu indomable que existe en de cada uno de nosotros. He sido testigo por más de 3 décadas del valor y el coraje incansable de aquellos que viven y luchan contra esta enfermedad. A medida que transcurren los años estoy más sorprendida del poder de ‘poner buena cara al mal tiempo’ y decir ‘si puedo’ cuando  apenas tenemos voz para hablar. Los eventos para levantar conciencia que se llevan acabo durente el mes de abril, como en el cual tuve el honor de participar este fin de semana en Tampa donde se presentaron más de mil personas para decirle al párkinson no estamos solos y juntos venceremos son aun mas formidables. Por eso creo que no hay mejor símbolo que el TULIPAN ROJO que nos represente como comunidad. Pues primeramente el color rojo de la flor demuestra nuestra pasión por la vida, sacrificio, esfuerzo, amor, devoción, esperanza, y fe. Y por  segundo, porque el tulipán al igual que nosotros aunque parecemos frágiles no lo somos. Al contrario el ‘tulipán del párkinson’ está más bello con sus ondas blancas alrededor de sus pétalos a causa de un virus, pero al igual que nosotros el hecho de tener o ser tocados por una enfermedad no lo hace menos hermoso ni valioso sino todo lo contrario. Su esplendor es mucho más grande a causa de la imperfección.

Ese espíritu que no se rinde y se enfrenta la adversidad  cara a cara haciendo que los tragos amargos que son como limones agrios puedan aun ser usados por otros en pasteles o en tarta de limón el cual se puede compartir con los demás para festejar lo hermoso de la vida. Por eso hoy celebro, aplaudo y elevo como ejemplo estas flores preciosas que sirven como símbolo para recordarnos lo frágil y fuerte a la vez que somos aquellos que vivimos con la enfermedad.  Por tanto no dejemos de luchar y expresarnos siendo ejemplo para otros que también luchan y se sienten no tener ánimo para emprender una nueva jornada.

Recuerden que dentro de nosotros se encuentra la semilla para ser un gran tulipán aunque  en este momento no aprecien su distinción. Nosotros al igual no podemos ser algo más de lo que somos a causa de la semilla que llevamos dentro. Somos en esencia unos preciosos tulipanes. No neguemos entonces nuestra existencia ni nuestra aportación a la belleza de este mundo aun cuando sea efímera y delicada porque de lo contrario viviríamos una vida amarga y pasajera.

@copyright2019

all rights reserved by Maria De LeonMD

Raising PD awareness ONE shuffling Step at a time. By Dr. De Leon

As we approach Parkinson’s Day on the 11TH of this month, I am reminded how far I and others have come in this journey with PD.  I am more determined than ever to continue the fight against Parkinson’s disease both on a personal level as well as a collective effort. As a physician, and patient I have been privy to many extraordinary advances in the understanding of this complex illness over the last decade. In 2016, I saw a rise of a new movement towards better understanding the gender differences; in an attempt to to find a unifying link that will lead us one step closer to a cure- if not for all with PD perhaps for various distinct sub-types. I have been privy to be part of Women in PD and the first guidelines and recommendations were recently published by the Parkinson’s Foundation on this subject.

Many new advances have also been taking place in the genetic realm with studies like Large PD, supported by Parkinson’s Foundation, which aims to unveil genetic characteristics particularly among Hispanics which could be the culprits in the development of PD. Other genetic projects which are equally fascinating to me, particularly since I am a LRRK2 carrier, is the ongoing Nasa project (funded by MJFOX Foundation) to grow LRRK2 proteins in space to a larger size since on earth they are too small and too compact to study properly.  The discovery of GBA1 (glucocerobrosidase) gene mutation in 2004, the most common of all gene mutations presenting up to 10% of all PD patients, has open the door to even more  possibilities requiring further investigations. The question remains as to why this gene which directs the production of glucocerebrosidase protein, which plays a major role in the waste disposal of the brain malfunctions? More importantly, why does it only develop enough build- up of waste in the form of clumped misfolded alpha- synuclein leading to formation of Lewy bodies in a very low percentage of those with gene mutation?   I believe that finding these answers will lead us one step closer to finding a cure.

However, being a clinician, I believe that the biggest answers lie within the clinical realm. If we understand the physiology and disease progression being able to tackle it earlier I believe we can halt the progression. One step in the right direction is recognizing the importance of non-motor symptoms presentation years before the motor key features upon which diagnosis still relies. I use myself as a prime example of how criteria need to be revised and non-motor symptoms incorporated to better treat and diagnose patients. Because of the high suspicion having a family history of PD and also of essential tremors with a genetic mutation although I did not by any means qualify as a “typical idiopathic Parkinson’s” patient I began treatment couple of years after my onset of symptoms still in my late 30’s. To my amazement many of the symptoms which had never occurred to me a specialist of PD to be related to be subsided with treatment. I have done well overall nearly 13 years out and remain for the most part independent and fully active. Yet, if I would have waited to develop all 4 key features (tremors, bradykinesia, rigidity and postural imbalance) I would not have been diagnosed till 10 years later. Not only altering the disease progression and my life style and quality of life significantly but I would be considered borderline for early PD. I believe that this happening around the world very often especially with young women who seem to have more pronounced non-motor symptoms.

In light of this, how do we then begin to raise awareness along with the standard of care for the families and nearly 10 million people who live with Parkinson’s worldwide? 

Start by educating each other along with your physicians. Begin by opening up about the things that are embarrassing, frustrating, and down right infuriating, as well as the things that matter most to you and your family as you battling this illness, leaving aside the shame which only serves in my experience to make diagnosis and treatment more difficult.

You may prefer starting these personal conversations in a more intimate setting like a support group.  As many of you know from personal experience, support groups are in essence the life line to living well with PD and bringing insight back to the health care professionals.

Yet, the reality is that not everyone has access to a support group because of distance, economics, place of residence, etc.  Thus, how does one have access to this? Of course there is always social media which can bridge any socio-economic or distance. Another option is starting your own group if you prefer something more intimate, personal and face to face which affords the benefit of having closer people in the same community to lean on when times get tough, because we all know it takes a village to make PD work for us.

Look around at your community to see if there are some groups already established. Ask your friends, your health care communities, the various Parkinson’s organizations, go online. If there are multiple groups in which you are interested attend a few or all to get a feel of the vibes…

Become a mentor- you have a story to share…

Send letters to your government leaders for more research money, more access to health care and treatments. Funding for projects like art therapy, music therapy, aquatic therapy etc.

For instance if you are young person with PD, you might prefer to join a young support group, a women’s group (because gender issues are different especially if child rearing), or single people with PD, or even one based on PD status like already had DBS (deep brain stimulation) and such. I, myself, truly enjoy meeting with other women with and without PD because independently of our health status most of us women share the same goals and life challenges like working and having kids, being a mother, a wife etc.  Sometimes we simply feel more comfortable in expressing ourselves or talking about sensitive issues if we are surrounded by similar minded individuals. But, above all choose wisely. Stay open to others ideas. 

Whatever you choose to do remember to make the shuffle a part of your dance by embracing PD without letting it define you.

Keep going even if its one shuffle at a time ….

@copyright2019

All rights reserved by Maria De Leon