“It does not matter how Strong your Opinions are. if you don’t use your POWER for POSITIVE Change , you are indeed part of the problem.” ~ Coretta Scott King
Women’s Day dates to February 28th, 1909, on the advice of Theresa Malkiel. Theresa was the first American woman to rise the ranks from a factory worker to a leader of the socialist party. She was convinced that the only way to fight for women’s inequality was to band together. Over a century now, the same principle holds true.
Fifty years, since the inception of a global celebration to address women’s accomplishments, some of the challenges and inequalities faced by many women around the globe have not advanced as fast as we would like it to be particularly in healthcare.
This year’s UN theme is “DigitALL : Innovation and Technology for Gender Equity.” Post Pandemic, the use of technology has skyrocketed, especially in medicine. Case in point this week as I tried to take care of my husband’s and mothers’ medical needs including my own, I was not able to speak to a single person at first try while contacting the various healthcare providers offices, pharmacies, and insurance representatives. Despite multiple attempts in many cases I was only able to hear a digitized recording which directed me to the ‘patient portal’ never mind I may have neither accessible portal nor reliable internet. This got me thinking about what our true goal is. We are supposed to be empowering women and giving them tools to navigate their care in a manner to have greater access to care along with more resources. In theory digital technology is supposed to decrease disparities among groups of people and eliminate gender biases and improve inequalities. However, my personal observation and experience in caring for neurological patients is that the forced implementation of technology at medical institutions for instance while eliminating all other means of communication is alienating minority groups as well as the elderly, financially disabled and cognitively impaired patients. we know that about 40-50 % of patients with Parkinson’s can develop dementia.
We must not forget who it is we are trying to benefit and provide tools to overcome the challenge of being a single mom with a fixed income living with a progressive neurodegenerative disease for instance. We have to find innovative ways of engaging and teaching women around the globe in this case, how to use technology to serve as another tool for communication, access to health, and empowerment but NOT the only choice or means of engaging the community.
To be successful in using much of technology available one must have access to internet and know how to use it. I have several elderly close relatives who live alone and are otherwise independent. Yet, as many attempts have been made to incorporate into mainstream ways of accessing care, the challenges that have ensued can create an unnecessary burden and handicap when once there was none. Plus, circumventing these barriers and challenges of remotely facilitating supervision and care by a third party in a different city or state can lead to much agony and frustration as I have learned firsthand. Keep in mind that I am not only quite savvy as to how to navigate many situations especially in the healthcare system along with being extremely persistent yet frustration at times can hit the roof especially when considering my own disabilities. According to a report cited by the UN 37% of women don’t even have internet (I would venture to say the percentage is much higher than this). Although, women account for nearly half the population, it is estimated that 259 million fewer women have access to internet. Now think about the fact that women already have lower income, lower education and live longer than men especially in minority communities such as the Hispanic/Latin, we are perpetuating gender inequality and will continue to do so unless we intervene. Technology should not be an end all be all but rather should be a tool in the armamentarium to help people in this case women get support be it financial, physical, or psychological to live the best life possible despite having a chronic illness. Since women are less likely to even own a mobile device by at least 12% around the globe only 25% is estimated to be connected especially in underdeveloped areas.
2nd problem is that women outnumber men in significant neurodegenerative disease which can affect cognition such as Alzheimer’s (it is believed that more than half are women), 70% of those living with MS are women and roughly about 40-50% of PD are women. Further it is estimated that about 25 % of PD people living on Medicare are living in long term care facilities which we know don’t have access to digital technology commonly.
3rd problem we know that humans are social beings and that all of us do better when we are mentally and physically active but not just random activities but those with meaningful connections like having social interactions so as we become more digitally dependent we are becoming even more isolated which does not help anyone living with neurological diseases like Parkinson’s which in women has even more negative impact because of tendency to have more depression, challenging the dogma of ‘first do no harm!’
Finally, as we face the last frontier in the treatment and care of women in Parkinson’s and try to bring equality, we must continue to appeal to healthcare professionals, public policy makers, Technology innovators and scientists and women of all walks of life to first band together to break down barriers; but also to remain steadfast as the guardians of humanity or we as women will continue to suffer the disparities. For it is only the combination of knowledge infused with the human touch that the true art of healing results and the only one capable of empowering change and decreasing the gap in women’s health.
” Porque si callas absolutamente en este tiempo, respiro y liberación vendrá de alguna otra parte…”
Esther 4:14
Hola. Mi hombre es María pero todos me conocen como “La Diva del Parkinson” por los libros que he escrito sobre temas de mujeres que viven con la enfermedad. Ademas, mis amigos íntimos y familiars saben que soy una verdadera Diva en lo profundo de mi ser. Me fascina todo sobre la moda pero también empezar estilos nuevos por eso mi gran lema es como dijera Marilyn Monroe: “ dale a una mujer los zapatos apropiados (para lo que desea ser) y conquistara el mundo”
Porque toda mujer desempeña varios papeles a la vez desde ser madre, esposa, compañera, trabajadora laboral y cuidadora. Pero cuando enfermamos por todas las responsabilidades que temenos nos olvidamos de cuidar de nosotras mismas. Desafortunadamente a veces hasta nos olvidamos de que somos mujeres primero. Esta es una de las razones por la cual he dedicado gran parte de mi vida al empoderamiento de las mujeres especialmente aquellas de nosotras que vivimos con el Parkinson Algo tan simple como el uso de un lápiz labial, como en mi caso siempre cuando sea un color rojo, puede alentarnos para seguir luchando un día o una hora más. Lo importante es aprender a utilizar no solo nuestra belleza interior sino también los talentos que son únicos para cada una de nosotras. En sí sabiendo nuestros límites y lo que queremos para nuestras vidas utilizando las lecciónes del pasado podemos convertirlas en herramientas muy valiosas para combatir los síntomas del presente.
Lo que quiero decir con esto es que como mujer tendemos a ver y experimentar la vida completamente diferente comparado con los varones de la misma edad que padecen de una misma enfermedad pero también presentamos con un cuadro clínico distinto y tenenos diferentes reacciónes (por ejemplo más discinesias) a los mismos medicamentos. A pesar de esto, nosotras tenenos de nuestro lado el poder de la fuerza interna algo que nadie puede quitarnos. No estamos solas en esta travesía de la vida. Unidas podemos vencer la discriminación y tardanza de un diagnóstico correcto de Parkinson porque apesar de que estamos en pleno siglo XXI seguimos siendo victimas de prejuicios y de nociones preconcevidas. Por ejemplo, ‘el Parkinson no occure a edad joven;’ ‘si no hay temblores predominantes no existe un diagnóstico de Parkinson,’ ‘no hay diferencias en la presentación de la enfermedad entre los varones y las hembras,’ o mi favorito ‘las hormonas no influyen en el tratamiento o en la presentación de los síntomas.’ Todos estos mitos debemos romper si queremos que haya igualdad en el diagnóstico y tratamiento de la mujer con Parkinson. Por eso estoy muy contenta de comentarles que he unido mis fuerzas con tres grandes mujeres españolas (Francisca ‘Paqui’, Laura y Ana) que fueron al igual que yo diagnosticadas a temprana edad. Hoy luchan para levanter conciencia sobre esta enfermedad en las mujeres.
Hemos empezado una reacción en cadena…y el tiempo es hoy para levantar conciencia sobre la salud de la mujer que lucha contra el parkinon. Así es que las invito a ponerse sus calzados, sombreros, o prendas favoritasy se unan a esta causa porque juntas todas las mujeres con parkinson podremos cambiar el futuro y retomar el control de la enfermedad y nuestras vidas.
Empezando el mes de enero de 2021 se emprendera la campaña de #mujeryparkinson #womenandPD
Chicas, les pido que porfavor se unan a esta campaña mandando textos, y poniendo fotos de ustedes junto a una frase de lo que significa ser mujer con Parkinson y usen el hastag #womenandPD #mujeryparkinson.
Porque como escribió Isabel Allende, “Nosotras somos las narradoras de nuestras propias vidas …” así que depende de nosotras que es lo que queremos contar y como queremos cambiar el mundo.
“When the winds of change blow, some people build walls others build windmills”- Chinese Proverb
Lately, I have been a bit distant from my social media sites and blogs and I must ask for forgiveness. After a month of joyful celebration on the occasion of my birthday, I have discovered that even the good times can end up in flames and the best things can go up –up-up into the stratosphere in a split of a second. At that time, we stop and try as best we can to reach and hold on to the good times and fond memories before they are completely out of our reach till the wind changes once again bringing us back the things we love.
So, at present the winds of my sail have slightly shifted into some rough waters and I am struggling to hold onto the elusive butterfly of good health ( as much as one can have good health in the midst of a chronic illness like PD) waiting for a favorable wind once more.
Funny thing is that as we all live with a chronic illness, we tend to worry about things that will most likely never happen; yet the things we never see coming can take us for a loop and blindside us especially when they come unexpectedly on a Tuesday afternoon as most unexpected things do.
After a month of pancreatitis followed by a wonderful month of birthday celebrations, reuniting with old friends and working on the things I love writing, speaking, sharing stories over coffee with other fellow Parkinson’s friends, I got a most unexpected call. You have a “mass” in an unexpected place- my liver.
As my life came to a scratching halt, I have come to realize a few things.
First, how lucky I am to have a wonderful husband, daughter, family as well as wonderful friends such as you guys.
Second, despite the fact that in this country we are experiencing a terrible health crisis, we are still very lucky to be able to have choices regarding what doctors to see, multiple treatment options even for those of us with low socioeconomic means due to many charitable organizations which help many individuals and families pay for costly treatments. Recently while at the medical center in Houston, I happened to run into a patient who told me she had traveled alone from Australia after selling a great deal of possessions just to be able to make the trip to this country. She said she came here because ‘the US has the best doctors and medicines in the world!’ She was visibly desperate to find answers and new forms of treatments for her cancer. She told me that in her native country although medicine is socialized and free for all, the waits are long and they don’t have many choices …it is first come first serve and one treatment type for all. In her case for her type of cancer. I felt so sorry for her and wished that I could help somehow. After all we know, prognosis and treatment plans really need to be individualized because not a single one among us is the same as the other. Even when we have the same disease or cancer our responses to treatment are entirely unique partly due to our genetics, our sex, as well as our cultural imprinting and belief system.
I referred her to several programs which typically help people with cancer not knowing if they could help her since she was not from this country. All the while hoping and praying they could offer her the assistance she needed to help her chances of recovery and fight her cancer with the best treatment options available.
Little that I know that a few months later I would find myself in a similar situation trying to find the best doctors and treatment options for my own disease. Unlike her, I do have insurance in this country but if it turns out to be a malignancy I will also need some form of assistance from some charitable organization since according to my healthcare provider I am already in the catastrophic range for this year. I thought I was doing great!
Thus my worries at this time are concentrated only on finding the best team of physicians to help me get back to doing what I love; spending time with family and taking care of people with PD. Thank God for the fact that although out healthcare system is in desperate need for an overhaul, we have many entrepreneurs who are willing to help fill in some of the gaps. Nevertheless, we still need our government to step up their efforts so that we don’t end up in a country such as Mexico where medicine like the rest of the country is ruled by the have’s and have –nots creating a sense of laissez-faire attitude in most of the population- why seek care if won’t be able to afford treatment?
Third, dealing with my doctors over the last few weeks, I have once again confirmed the need for self-advocacy. This seems particularly true in this day and age of high physician burn -out and demands within the practice of medicine. This undue stress is imposed especially on those who treat chronically ill patients. That is because the patients with the most medical problems like myself eventually become Medicare recipients. As with any government agency there are always more regulations, restrictions, and demands on the physician. These demands have in turn left physicians stretched so thin that more things are apt to fall through the cracks then previously over the last 2 decades. Abnormal tests can be over looked easily at times…
Hence, when dealing with chronic illnesses have a voice that can advocate on your behalf if you are unable to. It takes time and effort particularly if you are already feeling bad to keep up with doctors’ appointments, insurance bill’s, tests, medications, and so on. Keep a diary, ask specific questions, keep problem issues to no more than 3, make more frequent appointments (don’t settle for I will see you in 6 months if you have ongoing problems), when getting tests done ask specifically what this test will show or help with and during follow up ask again by name the results of that test (e.g. what did my MRI brain show?). If you know you are waiting on test results make sure you schedule to follow up also if you have gotten a new treatment. Always call if in doubt or with questions. Remember to practice patience, which is the most difficult thing to have in the midst of bad news or new procedures. All things in medicine take time especially the more complicated the procedure, the history of the patient, or the findings – which is always my case. Most likely you will have to wait weeks for an answer even when all things are running smoothly – keep your cool, rest, eat well and follow up until you get the desired answer.
This too shall pass and the wind will once again blow in our favor!
when the wind blows don’t be the one fighting it rather be the one to harness it and find a new direction…
@copyright 2018
All rights reserved by Maria De Leon
“Self care is not self indulgence. Self care is self respect and an act of survival.” Lorde
I am not sure about you ladies, but as of late I have been wobbling on an emotional precipice between the recent negative medical news of my husband, my daughter going away to college (perhaps far from home in a world where there appears to be increased chaos at each turn), my mother’s declining cognitive status, and my own current relentless wave of medical trials and tribulations. Sometimes as my dad would often say, “too much is too much.”
My natural inclination is to push forward on all fronts no matter how I feel. As a physician and a mother, I am used to taking charge during a crisis and stepping up as the caregiver placing my own needs at the bottom of the list. However, throughout my years of living with PD, I have discovered that not prioritizing myself however only leads to a slippery slope. My bottled up frustrations, stress, and malaise have a tendency to creep up to the surface like an erupting volcano seeping through every pore of my being (Curse you Parkinson’s disease, migraines and whatever other medical problem I have) causing me to become the true epitome of a fiery dragon. Just like a volcano can no more contain its pressure so do our feelings must find a way out – unfortunately when they do they cannot only be explosive but extremely lethal causing devastation in its wake, as we have seen in the news last few days with the eruption of Kilauea.
One of the things I always talk about in managing this chronic and any chronic illness is self-care and prioritizing once self. Easier said than done especially when you got all the burners on.
So, in the midst of all these new challenges, I have had to force myself to find time for me to heal in order to continue caring for all those who depend on me and get to the root of my ailments.
Of course, this is much more difficult when you look and feel like you are ten months pregnant carrying twins! Yes, I got a partial small bowel obstruction-yikes! How did this happen? I was doing so well? For starters traveling lots, not keeping schedule on meals, along with increase stress did not help and possibly aided in my current predicament.
First order of business besides getting rid of relentless nausea and vomiting and prevent dehydration while reliving obstruction was to disconnect from the world- hence my lack of presence in social media as of late. I have also committed myself to spending more time with my daughter talking…this time is priceless.
Reminding myself and my family that frivolous time spent on one self like reading a favorite book, doing art, laughing with a friend, watching a favorite movie, listening to great music, or simply resting actually does more for the healing process than medications at times.
I have caught up on sleep. Allowing myself to sleep as much as my body needed to recover. I am doing better but not 100% back to ‘normal’ yet. Even in my “pregnant” state, I have continued my breathing treatments and meditation. These have helped me tremendously in calming my pain, anxiety and discomfort of having a huge belly.
I even had a manicure just to feel better- bright pink! Plus, even though I have been feeling like crap for the last 3 weeks, I found that doing some talks over the web helped my mood and my overall predisposition. Bringing smiles to others always brings back positive vibes into our souls.
Remember, that if we want to be ambassadors for those who have a chronic illness like PD and bring positive changes, we must first be good to ourselves and be happy behind the scenes when just you and no one else is watching. Do the things I have recommended often, like take time for yourself every day, make time for family and loved ones, do things that make you happy, pamper yourself (there are many ways of doing this without going broke). If you feel that the world is spinning out of control, go ahead and inject some kindness back into it.
Love to hear your own self-care strategies in dealing with chronic illness.
Xoxo
Parkinson’s Diva
copyright@2018
all rights reserved by Maria De Leon
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 burnoutand 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.
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!
“A woman is strong because she has been weak; she is beautiful because she knows her own faults; and lives without fear because once she was afraid.”
Carolina Herrera
As we draw near the end of another year, I am prone to reflect on the good, the bad and the ugly that which has greatly impacted my life. Not everything that touches us or makes us who we are is necessarily good or at least not on the surface.
This year has been a year of great losses for many of us as well as great victories. Is my experience that these usually go hand in hand. The triumphs allow us to get through the sorrows and hardships while the devastating moments make the victories that much sweeter.
The year started strong with me finally getting better after last year’s pulmonary embolism and TIA (mini stroke) which took me nearly 6 months to fully recover.
Then it suddenly took a turn for the worst with my best friend being diagnoses with stage 4 cancer! a week after we had made all kinds of plans for the year…
Got to travel to DC see old friends, make new friends, and even meet a few celebrities such as MJFox while advocating for changes in public policy to improve research funding, and better more affordable health care at Capitol Hill.
Traveled to a new country with my husband and daughter and found the perfect city that made my hair look fabulous because there was no humidity. Who knew my hair could look good first thing in the morning?
After much prayer and seven long months of grueling chemotherapy and bone marrow transplant, my friend is finally cancer free- confirming that miracles still exist!
Saw two of my nieces and nephews graduate – one doing a master and one started college and i got to play the fun Tia (aunt) role throwing parties and even traveling with my niece to her new university. Since it all is connected somehow, I got to meet my new friends (Kate & Chris) at Health Union where I am now a contributing author on the health communities of http://www.migraine.com and http://www.parkinsonsdisease.net; where I am cherishing the opportunity to work with like minded individuals who are just as passionate about making a difference in someones world. For me doing something that I love doing aside from Parkinson is also a huge plus.
Let’s not forget that this year, we celebrated 200 year’s since Dr. James Parkinson annotated his observation on a disease we now call by his name. As such, I was a part of a huge campaign to bring PD awareness to the Hispanic community in this country by appearing on sites like Dr. Isabel show on Univision and was broadcasted around the country through the radio to several Spanish speaking station from Texas to Florida, Georgia and the Carolina’s. Plus, I now can boast of having two published books with my latest Spanish book on PD – Viviendo mas alla del parkinson was recently published.
Of course before the summer was over, I was down for over two months with a viral infection after seeing my doctor the day before, where he complimented my good health and said i did not need to see him till next year. Famous last words! this little viral infection caused me to miss my opportunity to travel to South Dakota. Fortunately, I was able to at least virtually meet a few of them including saying hi to my friends whom I like to call ‘the Mary’s!’
Lost an old friend and regained an old friend. But, as I was driving around the other day dropping off and chauffeuring my daughter and classmates all over the place I realized is not such a bad life. Sure I can’t multitask to save my life, can’t remember even my own name a couple of hours after taking amantadine or even where I opened a bank account – “at some bank on a corner street”, I told my husband. “Which corner?”, he asked extremely perplexed since there is one in nearly every corner. “I don’t know,” I said. “I am pretty sure I will know when I see it.” Not comforting words to my husband or any other man.
I get frustrated easily and my goodness the heat is unbearable dripping droplets of water from my forehead on a regular basis but not a drop of fat lost- husband’s theory is that my body is conserving its nutrients because I seem to go into starvation mode for a few days at a time when my gastroparesis is at its peak. At any rate, I have learned to appreciate my curves and the moments when I am totally ‘me’ feeling as good as any young healthy person would – for which my husband has dubbed my life as the Curious Case of Maria D. When I am on top of my game and not choking on my own saliva and not tripping over myself or running over the garage- I seem to be getting younger and stronger in his eyes!
Perhaps, I am not afraid of PD because I was once consumed with fear of the unknown; it no longer has a strong hold over me. Thanks to PD, I have learned to be more forgiving of mine and others shortcomings and have learned when to rely on my strengths and when to ask for help because I am weak- which happens a lot. I constantly get inspiration from strong, independent, beautiful, intelligent Hispanic Women who happen to be icons in their own fields such as Isabel Allende, Carolina Herrera. i identify with the latter because she began her career in her 40’s, at an age when I too had to make a new transition in my life from physician/clinician to writer/motivational speaker and most important of all patient advocate. And like her, I believe that fashion is an outward expression of ourselves free and unencumbered. But, the best garment any woman can wear is knowledge.
Aside from all this things for which I am truly grateful, one of the greatest gifts and joys has been able to share my journey with all of you.
Although, fortunately the new health reform bill was turned down last night we as patients still face the uncertainty of what the future healthcare system will bring reform will bring. Thus, we strive to have members of congress understand what it means to live with a chronic illness and deal with the financial burden it places not just on the patients and families. More importantly, society as a whole can suffer if there is no assistance for the growing number of people living longer with chronic illnesses like Parkinson’s and Alzheimer’s, and cancer to mention a few. As I give thanks to God for the miracle of modern medicine and His Grace which has brought healing to my best friend, I reflect on the issues of healthcare. And as she begins her slow recovery from recurrent metastatic stage 4 cancer which was wide spread, I ponder not only on the toll the illness has left on her body, her family, the relationships but also the enormous financial burden it has placed on them after 8 months of hospitalization, numerous bone marrow transplants, labs, testing and the slew of chemotherapeutic agents not counting the number of specialists and other ancillary staff. The toll that the cost of medicines takes on a family or individual can be insurmountable. Unfortunately, this is also a place where few people ever come back or recover from. Not only is the sudden realization that our health is not under our control but the daunting reality of having to live a progressive illness as many of us like myself lose their livelihoods and ability to continue working can be far too overwhelming.
The grave reality is that financial factors play a major role in patient’s use of medications and subsequently sadly the patient’s outcome with a disease process. I have seen this first hand as a patient, doctor and caregiver. Sometimes, we don’t think about the financial issues at the onset of illness since our priority is to get well; but as the disease progresses and the time from diagnosis extends, this is the most critical factor in a person’s long term outcome for which many of us are ill prepared and as physicians don’t provide adequate guidance and support. I summit that low incomes and poor finances along with lack of access to medicines and treatments is the number one cause for patients and families demise and dissatisfaction with disease rather than the lack of treatments. I have heard time and time again from both patients and doctors the frustration in their voices in regards to lack of coverage of much needed medications. Unfortunately because always have to revert to the “cheaper” treatments the options become quite limited and not always offer the best outcome.
As I prepared another talk about the 200 years of Parkinson’s and the latest discovery and treatments options I was reminded by the people in the audience to whom I have addressed in past conferences. Most elderly, Medicare on fixed incomes who cannot afford the luxury of paying high premiums for newer medications even if they do promise to be more effective, with fewer side effects or prolong quality of life decrease disability and so on.
Looking at other patients with chronic illnesses, especially cancer patients are at risk of filing for bankruptcy due to severe financial burden but what is most interesting is that those who file for bankruptcy in context of chronic illness are at greater risk for having an early demise. Un fortunately, I have seen it firsthand particularly those who are young and don’t have the financial stability that an older person might have from years of productive labor hence are more likely to forego treatments or seek alternate remedies as in the Hispanic communities because of lack of monetary resources and lack of access to health care because of poor or no insurance coverage. And even when the chronically Ill are over 65 and on Medicare, the restrictions placed by an outside third party who does not understand the intricacies of a complex illness such as Parkinson’s can tie the hands of the healthcare practitioners. Forcing patients to use less effective treatments or older treatments or asking doctor to find the cheapest medication which in the case of Parkinson’s is levodopa/ carbidopa. Although it still remains the gold standard, 50 years’ experience has shown us that this medication alone is fraught with side effects when used as a sole treatment option increasing likelihood of dyskinesia’s and subsequent decline in quality of life.
We cannot allow our chronically Ill to continue to undergo increased financial toxicity due to lack of government support. We must stand up and ask our representatives to continue to provide support for those who are chronically ill and not remove benefits for those with preexisting conditions and improve access to healthcare especially much needed drug treatments.
Some of the questions you might want to have early on with doctor when diagnosed with a chronic illness is referral to social worker, and to lawyers experts in chronic diseases for financial planning including long term care for spouses or caregivers.
When discussing medications ask the price but also price benefit ratio. Don’t simply ask for a cheaper drug which might result in more adverse effects causing more hospitalizations and more doctors’ visits or side effects than a more expensive medication which in the long run would be more cost effective to keep you stable and also avoid the inherent confusion many have by having different generic brands for same medicine. (In my experience, the varying colors and shapes of same medicine gets patients confused by making them believe they are different especially in the elderly). Ask if there is a less expensive treatment option that is equally effective.
Are there any nonprofit organizations or community organizations that can aid with burden of Drug cost. Also inquire what about any drug programs from companies – different companies have different philosophies in regard to helping patients.
But also important to note that many drugs used in neurology to treat many non-motor symptoms are off label but widely accepted among the community physicians to treat certain causes but with the new restrictions of Medicare. Previously employed medicines maybe denied leaving you stranded …I am in a quandary at this point with one of my meds. Discuss with your physician have them appeal if denied or find other appropriate alternatives. Don’t just suffer because insurance denied or medicine is expensive.
Here is a foundation where some of you might find assistance Patient Advocate Copay relief -1-866-512-3861. Also look at NORD. http://www.patientassistanceprograms.com
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the one who’ll decide where to go.” Dr. Seuss, Oh the places You’ll Go!
I love this time of year, not just because the weather is beginning to change although living in Texas sometimes it seems like we just have hot, hotter, drenching sweat or can’t move humidity. Nevertheless, we have gorgeous days like today where there is a clear blue sky with a gentle breeze and perfect 66 degrees. Suddenly, your mood is uplifted and all seems right with the world. But, also because this is the time of year when we raise awareness for PD which means not only do I get to spend more time pursing my passion; but I get to travel to meet wonderful people who share my same passion and illness. When I travel as I did just last week, to Lubbock to the Southwestern Parkinson’s Society conference, I am always impressed by my agility and ability to flutter along unencumbered by my usual companions (symptoms of Parkinson’s). At least temporarily until they catch up with me, hard as I try to lose them.
On the way to whatever destination I am bound for, I am always ecstatic by the possibilities especially when I travel with friends or schedule to meet friends along the way. However, inevitably my old friend shows up with its entourage of little dwarfs for the party: jerky, sleepy, clumsy, Reggie rigid, sweaty, and sometimes plain dumb. Once they arrive uninvited without party streamers, confetti or balloons, I am transported back to my cell without as much as a gift or slice of birthday cake. As the scent of freedom and the image of a woman who is Parkinson free lingers in the air like an afterthought, I begin to choke on my lunch. In the commotion of it all my inner Diva pulls out a song which has become sort of an anthem for me,”It’s my party and I’ll cry if I want to, cry if I want to….You would cry too if it happened to you.” Invariably, listening to this sound track play over and over (because of OCD) in my head, puts me in a happy mood realizing the triviality of it all taking into account how lucky I really am to be allowed to be a part of so many great people. At times although, It may feel like we are inside a prison, the truth Is that the cell doors to the jail are WIDE-OPEN, there are no chains and no one is holding us back! we are just as free as ever to do what we want with our lives.
However, we must remember that in order to be productive and effective advocates, mom’s, wives, friends, exercising our freedom with enough energy to bolt out of our prison cells and comfort zones ( to live a fuller life despite chronic illness – ), we must find time to recharge. We all recharge differently. Despite being an extrovert which thrives on having friends and family near by, I need my quiet time and rest. Traveling although exhilarating can be terribly exhausting especially when I have to deal with ill behaved companions who show up at the most inopportune times. Thus, when I return I need down time- usually in form of undisturbed sleep away from uninvited guest who have over stayed their welcome. No matter your method to recharge; it is imperative that you do so. I know that is never easy to carve time away from your responsibilities to step back and pamper yourself. For me it requires depending on others to fill in the gap when resting and rebooting. I would love to be the ‘super’ woman who can master it all with a single bound. However, it is impossible to act independently even when you are 100% healthy much less when you live with a chronic neurodegenerative disease (i.e. PD). If I should try to go at it alone, I am sure to make many mistakes along the way and make my symptoms worse. Thus, sleeping 10 hours when possible is not a bad compromise to allow me to sharpen my skills to be better at what I do- writer, advocate, teacher, mentor, mom, wife, sister, and friend. As I lie down to sleep, I think this is in preparation for continuing to dream, travel, and inspire others to become all they are meant to be despite their PD busting the cell doors of their prison wide open to see beyond themselves to help others in their journey as I strive to do as well.
So, in the end knowing that my life has a purpose and I am free to go out whenever I choose out of my own cell to travel and encourage others in their walk with Parkinson’s – even when I have to frequently face and deal with my pesky companions who are always at the door looking to crash my party. I will still gladly sing “it’s my party and I’ll cry if I want to..” But, instead of tears of defeat, frustration, sadness, or regret I will happily shed tears of joy and gratitude for the people I have met along the way and the places I will go thanks to my PD. You too would cry if it happened to you!
I feel very blessed to be part of a greatly empowered group of individuals from all around the country, brought together by the generosity and leadership of MjFox foundation. We all came collectively to D.C. committed to advancing the cause of Parkinson’s disease which affects nearly 2 million people nationally. Myself and others are thrilled to speak to congress to ensure a better future for our families and for all those of us who live with PD. We are all advocating for a chance to have the best quality of life possible and to remain productive members of society.
I, personally, have been extremely lucky to have started treatment early in my disease by way of my profession and have access to excellent physicians and colleagues who have helped me remain active for the past decade despite my illness. However many in our communities have not been as fortunate to have access to healthcare, physicians /MDS (since many states lack neurologists), or even be able to afford the latest and newest medications and treatments available making living with PD that much more difficult. Hence, I along with others have descended upon Capitol Hill to make our voices heard on behalf of those who are unable to stand with us physically and the thousands of patients in each of our communities back home.
The goal of our visit is encourage increase funding ($36.6 billion) to the NIH to help biomedical research in all neurological areas but mainly in Parkinson’s disease. We are fast losing ground as a leading medical research country with China fast on our heels; if we don’t secure these funds not only will we lose our status but more importantly human lives will be at stake with loss of employments (we have the brightest minds in the neurological sciences and without money will be forced to move on to something else) and loss of quality of living . This money also helps fund our neurologists/MDS in training without it we will face and even greater shortage. We also know that the more minds working on an issue can potentially increase our odds of arriving to better treatments and a possible cure of any given illness i.e. PD.
Secondly, we are requesting allocating $5 billion to CDC to help put the surveillance act in effect. although bill was passed to start a registry of who and where PD is most prevalent it has not been instituted formally due to lack of funding. if we are to make ways in understanding the causes of Parkinson’s in various subpopulations such as young vs. old or understanding the significance of PD pockets as the one that exists in my neck of the woods in EAST Texas a.k.a. ‘East Texas PD belt.’ Without a national registry we can only estimate the number of people affected, which most of us believe is grossly underrepresented, thus we cannot begin to address the needs of the PD community in its entirety and allocate appropriate resources if we don’t know who and where these people are. Plus, we already know and estimate that the number of PD is on the rise and expected to double by year 2040, so chances are everyone will know someone affected by this illness at some point in their lives and may even have to be a caretaker or a patient themselves. The DoD (department of defense) also needs money to evaluate PD in military with an increasing number of its soldiers returning with Parkinson’s and Parkinson’s like diseases after serving overseas.
Thirdly, we also want to encourage health care reform that will continue to put the needs of patients first allowing them access to care (this includes physicians and other treatment modalities), to therapies (e.g. PT, OT, and ST) without caps. more importantly, to due away with the donut hole since 80% of PD patients are Medicare recipients on a fixed income and don’t have $8000 in the bank to cover medical expenses like drug therapies. As I have said many times, I firmly believe that patients could do so much better and have greater quality of life if doctors were able to treat their patients without restrictions from the government and allow us as doctors to choose the best treatments available and deemed necessary not what the insurances or government allow. Having affordable access to the newest treatments would allow millions of people like me to continue the work we do and even continue to have jobs without burdening the system keeping us out of Medicare and institutions.
Finally, the thing to remember is that we patients don’t exist in a vacuum. We could not make it through our days without the help and support of our spouses, families, loved ones and our team of physicians and other healthcare providers. Some have suggested that for every PD person afflicted with this disease 7 other people are affected by it including the immediate family. Thus, fourthly, we would like to support the Raise Act (recognize, assist, include support and engage family caregivers act). Being a full time caregiver puts people who are caregivers at financial disability because they are forced to leave the work force early. this is especially devastating since the majority of caregivers are women who already are at a financial disadvantage compared to men when they stop working not only is their income diminished but the lose number of credits / earnings eligible for social security upon age of retirement. since women usually live longer then the burden on society increases. (40 million caregivers who provide 470 billion dollars of unpaid care. 1/4 are millenniums )- thus by supporting this act and making it law we can provide assistance to those of us who have diminished the cost of the government by giving of our time and resources to care for the chronically ill (i.e. PD). this especially important because often times the caregivers themselves (especially as we get older) can also be affected by illness as well.
If you could not join us at the forum this year, you can still do your part by contacting your State Senators and Representatives from your district and ask for the above issues to be considered when voting. Ask your representatives to join the Parkinson’s caucus if not already part of it.
thank you for allowing me to be a representative ….. and let’s bring the 21st century cure act to fruition! this acts promotes and funds the acceleration of research into preventing and curing serious illnesses.
thank you also for Parkinson’s foundation, Parkinson’s alliance support, and Parkinson’s unity walk.
The count down to PD forum has begun and I have begun to feel a stir in my belly for the chance to meet with members of congress to discuss salient matters regarding the needs of all people with Parkinson’s. (on the side perhaps catch a cherry tree blossoming)
Who would have thought that one summer internship, as a high school student learning the ways of the state legislature, role playing a congressional woman would be of great benefit lo this many years later? Since that time, I have had to rely and recall my experiences in law making as I have become an active advocate for Parkinson’s disease and neurological issues in general at Capitol Hill. I am well known in the office of my State Representative Louie Ghomert due to my many letters and phone calls. Plus, I have had the pleasure of meeting him in my home town once or twice. I still remember with fondness meeting Tip O’Neill Speaker of the House back when I was just a freshmen at college. I have also had the pleasure of serving as Assistant State Representative for Texas for Parkinson’s Action Network for a number of years, now merged with MJFox. As Fox volunteer, I continue to serve in that function and looking forward to my upcoming trip.
Long before I was a neurologist or PD patient, I was already an activist of human rights and patient’s advocate. I am just glad that I now get to have a stronger voice and hopefully greater influence than in my youth as to the well- being of those with chronic neurological diseases particularly Parkinson’s disease.
We all have a long list of issues we would like to see addressed and changed in order to better the quality of life of those living with and caring for people with PD.
One of my biggest frustrations and dissapointments in caring and treating patients with PD is the lack of access to neurologists followed by restrictions/ limitations in access to medications neeeded. This last point, in my opinion, is the cause why so many with PD do so poorly. There are many states in the U.S. devoid of neurologists much less movement disorder specialists. One of the things, I would like congress to address is the expansion of teleneurology along with passing a law which allows patients to receive the treatment deemed necessary by their treating physicians not a third party who knows nothing of medicine!
Since 1999, Telemedicine has been used for evaluating and diagnosing acute strokes with moderate success across the country; yet despite its many benefits it is still NOT universally used. (which by the way as an intern at UT -Houston working in the stroke unit I was involved with the inception of this technological way of evaluating remote stroke patients as well as in the stroke scale development). Of course teleradiology (extremely familiar with thanks to my husband’s profession) has been in practice for years with great success but still with limitations due to credentialing issues across state lines.
However, in regards to this much debated subject the tide maybe beginning to turn as some who have been on the fence regarding this issue are slowly conceiding its potential benefits. although much work still remains to be done regarding the rules of credentialing, liscencing, liability, and above all reimbursement which is fair to physicians. Nevertheless, 29 states have already passed laws requiering private insurances to pay for telemedicine delivered services same as they would for in patient care.
But, since the majority of neurological patients especially those with chronic disabilities /illnesses are primarily Medicare recipients, the federal government remains the biggest barrier to its implementation. The government has always had back wards thinking when it comes to the rules of medicine …they pay for nursing homes but won’t pay to prevent patients from getting services, treatments and medications to avoid worsening of symptoms or becoming recluse while becoming a burden of the state and family. they refuse vital ancillary services like PT, OT, ST but instead they are willing to pay thousands more for a hip replacement which many times in the case of PD patients signifies the beginning of the end. yet, they won’t pay for the medications needed to keep these same people from freezing which cause the falls to begin with or the therapy to keep mobile. Rather than valuing the individual care of those suffering with chronic neurodegenerative disease like Parkinson’s to improve their quality of life, and increase or continue to benefit from their contribution to society thus diminishing the burden on society and families; currently, Medicare pays nothing for having a physician care for them remotely via telemedicine but rewards those that visit hospital/ university based clinics as well as costly hospitalizations.This type of care serves only to polorize and increase the disparity between urban and rural as well as solvent and financially needy individuals. It’s no wonder we have few or no specialists in rural communities where the majority of patients reside when the physicians time is not deemed as valuable as one practicing in urban setting.
What about thinking about our patients first ? We could unburden some of our caregivers by reducing their drive time and frequent visits to specialists for instance. What about unburdening the care partners by making patients self sufficient and independent because they are on the correct doses of the appropriate medicines not the one the insurance or government thinks we should take because it is cheaper.
An example, I like many of you am a walking pharmacy. As all of you who live with a chronic illness know that a single change can throw a wrench in the whole well oiled machine causing the whole system to come to a complete hault. This is because not only are we experiencing all the systemic effects of our illness but also deal with the myriad of drug to drug interactions thus finding a balance the more meds we take is a true art. Now when everything is fine tuned, you can breath and go about your life without having to give too much thought to the ever present PD. But what happens when every time you go to the pharmacy to get a refill you have to fight to get your meds? not only is this extremely stressful but worse if suddenly “the insurance” or “Medicare” decide that it’s too expensive and you don’t need this medication but rather something ‘similar’ because its cheaper. They are essentially saying we don’t care about you as an individual, your illness, nor do we care if you fall, get psychotic, or end up dyskenetic or hospitalized all of which will cost insurance 10x more; never mind the emotional and financial anguish incurred by patient and family of patient as long as they same a buck on the front end. either take what they give you and suffer above consequences or like me many times end up paying a heavy price to keep my health in check and out of hospital. there has got to be a better way.
What I am hoping is that some day people with chronic neurological illnesses like Parkinson’s can have better access to providers and the medications they need. Only then can there really be a true improvement and advance in the care of people with PD. What I am also hoping is that someday I can work side by side other great public policy makers like my friend Ted Thompson (Senior Vice-President of Public Policy for MJfox Foundation) as a Public Policy maker myself doing Public Health fellowship through Neurology once my daughter has left home.
So although sometimes our roads take many unforeseen detours, in the end its the passion within our souls which fuel our destinies allowing us to arrive at the exact destination at just the right time for the greater good of others. I guess despite PD, I remain a dreamer…after all it is the dreamers who posses the exorbitant imagination that underlies the power to change the world. I like Mr. Smith Goes to Washingtonintend to prove that one voice can make a difference. Now imagine what we can accomplish together!
Keep you guys posted on my travels and interactions at the hill. for those going see you there and for those not able to, I hope you feel you and your needs will be well represented.
Parkinson's Diva 