The Road to Capitol Hill: By Maria De Leon

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 Washington intend 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. 

 

Musings of a Parkinson’s Night Owl: By Maria De Leon

“Every Renaissance comes to the world with a cry, the cry of the human spirit to be free…” Anne Sullivan Macy

 

The other day as I stayed up half the night like most of us with PD tend to do, I was too tired to read, or write and too restless to lie quietly in the dark. I decided to make my way to the Living room and surf the T.V. channels. After a few minutes, I stopped as I recognized an old movie which I had not seen since medical school “Lorenzo’s oil.” A movie starring Susan Sarandon (for which she won an Oscar) and nick molten about a child who develops a neurological illness known as adrenoluekodyatrophy. This Terrible condition occurs only in boys because is x-linked causing behavioral problems, blindness, deafness and eventually death. As I began to watch a wave of emotions took over me realizing how long it had been since I first saw this movie trying to remember my first impressions and how different they probably were from now having had the opportunity to treat many similar patients. Recalling my last little boy whom I diagnosed and the sadness and hopelessness i felt as I saw him drift into darkness and eventually succumb to death. Remembering the pain, anguish, and despair her mom felt upon confirming the diagnosis, never once remembering that movie.

Now as a seasoned neurologists, mother, and patient I found myself being completely enraged at that mother’s behavior. Wondering what I would have counseled if I were the attending physician on that particular case and weighing my options as a mom and patient. Surprisingly my decisions would have all led to the same path – let the boy die with dignity since he suffered for at least 3 years as he descended deeper into a coma only to slowly come out after years of seizures and suffering regaining some hearing and vision but remaining quadriplegic and bed bound for life. I wonder what he would have said about his life. The lack of choice in the matter. In the end, I wonder if he would have said it was a meaningful life. of course the fact that he survived such ordeal when he was aspirating and suffering asphyxiation continuously for years speaks volumes to the strength and power of the human spirit and to the  fact that life is not in our hands but that of our God.

The parents life revolved around the illness of their son from the moment of his diagnosis- the first rule of living with a chronically ill patient is not to make the disease the center of life. This is giving power and admitting it is stronger than us.  How often we as caregivers make life decisions based on denial or guilt? Sometimes we have to learn to let go and not stop living ourselves. We as caregivers are just as important as the patient. This does not mean we abandon our responsibilities or wash our hands of it rather we must find a way to maintain our own health, goals, dreams in spite of another’s need for our complete attention. We don’t refuse help from others or alienate ourselves from the world as this mom did. Important not to neglect relationships like marriage. Other children, siblings and friends as this couple did.

I am afraid too often we think we are invincible or too proud to let others lend a hand.

Plus, in dealing with any chronic illness we have to avail ourselves of an entire medical team especially if we want to change the science. As I have written before respect is essential for a good patient- physician relationship. Both parties are equally important to advancing knowledge and science of any disease. Anytime one party thinks they can work alone will only truncate progress. This is what unfortunately happened. Although the parents discovery of “Lorenzo’s Oil” was a major breakthrough because it did not go through proper channels of being tested within the confines of medical science, the treatment has mostly fallen into oblivion and rarely discussed in any medical settings due to the controversy and animosity it created among parents of patients with similar disease that were desperate for cure as we are now with PD an the neurological community who was painted as insensitive and uncaring to the needs of their patients.

Remember the saying never bite the hand that feeds you…doctors and neuroscientist have the scientific knowledge and experience of a thousand patients we only have one – ourselves or our loved ones. However, by working together we can fill in the gaps. So let’s not hastily take non- recommended treatments without discussing with our physician’s because if truly beneficial if done outside the confines of scientific methodology few people will reap the benefit as has been the case of the treatment with this oil which according to small studies if used early on in this disease can halt its progression.

This year let’s make waves by working together for a cure!

 

Thanksgiving leads to True Happiness: by Maria De Leon

“In all things give thanks..” 1 Thessalonians 5:18

as the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of another wise ordinary life.

You may say, how can living with PD be ordinary? Living with PD Makes life more challenging for sure – as I sit here fiddling with my heart monitor , which I am to wear for the next month, because the battery light keeps going on and off interrupting my train of thought as I compose this blog.  different, yes- absolutely!; but not less ordinary than any other persons life who struggles with his or her own burdens.

is not my living with PD, being a doctor, a mom, a wife, a cancer survivor or having any extraordinary talents which makes my life so very special filling my heart with overwhelming gratitude towards my God, my family, and friends.  rather my gratitude and sense of fulfillment has come about by the challenges I have thus far overcome thanks to my God and the opportunities that have come my way for which I was never qualified yet was chosen to do.girls (few of the women I worked with)

One of the best examples of this was undertaking the task of teaching and working with a group of women over the last four months. I have lectured and taught for years in various settings but I have never been instructed to carry on a class for this length of time in a non medical subject.  Never had I been especifically called to teach and instruct women on ways to Become empowered as women, wives, daughters, mothers, and professionals to other women like me who are dealing with chronic neurological disease in their lives many at younger age than me or are caregivers to loved ones with dementia. Certainly, I felt at the time and still do that there are many other women who are much more qualified on the subject matter than myself. Yet, it was me who was asked to do this job when I walked in one day to make a donation to a women’s ministry.  My initial instinct of  trepidation was met by an inner voice  which said:” you can do this because I am with you.” Thank goodness I did not let my  fear of the unknown keep me away from one of the greatest privileges of developping, mentoring, and growing along side women who were facing similar challenges in their lives as many of us women who live with a progressive disease do. As they learned to conquer their fears of living life with a progressive debilitating illness and an uncertain future, they found support in one anther and realized that self – love is the beginning to a well-adjusted life even in the midst of adversity.

I have long realized through my career and personal life that the only way to grow and discover new things is to leave the safety of the shore. Because women have always been one of my passion’s especially those with neurological disease ; hence, the reason for putting ink to paper developing a woman’s mantra for living well with chronic disease –Parkinson’s Diva. With this philosophy in mind, I set out to learn how to become a better mentor and teacher to 12 beautiful women. What happened is that although my PD symptoms were giving me heck and my memory is atrocious due to amantadine, we still shot we still learned the fruits of the spirit in sign language.

As the last two weeks of class neared by, I wanted them to know how very special they were and how proud of their progress I was. So, I gave each one of them a tiara to remind them of their “diva-neess” and accomplishes thus far. I reminded them to put on their crown daily literally and figuratively especially when confronted with adversity or situations that may threaten to strip their power and confidence. I spoke of how important it is to always rise to the occasion no matter how impossible it seems because the reward will always be worth the sacrifice.

In the end, what we choose to do with our abilities and talents, as well as what we choose to focus our attention and energy on really determines our capacity to develop empathy for those around us. Subsequently allowing us to realize how very blessed we truly are. My chest swelled up with pride and humility, for having been given the opportunity to be a part of these women’s journey even if for a short time. As, I saw one of the women entering the stage to receive her diploma wearing a sparkling tiara, Suddenly, the nausea, shortness of  breath, leg restlessness, and back pain I was feeling dissipated watching her glow on stage. Thus, I gave thanks to God for allowing me this opportunity to witness this precious woman become empowered taking control of her destiny as a stroke “Diva” raising up to meet the challenges of living with her stroke at a young age while being a single mom.

Thus, I give thanks for the simple joy of making someone else’s life a bit better simply by being me – “Parkinson’s Diva”

My goal is as one of my favorite American writers and poet  R. Emerson would say:” ..to leave the world a bit better, whether by a healthy child, a garden patch..to know even that one life has breathed easier because {I} have lived… this my friends is what I am most thankful for this holiday season.

Happy Thanksgiving!

Food for Thought on the Future of Health Care: by Maria De Leon

Now that the new president has been elected, politics aside, I am a bit excited and hopeful about the possibility of new, much needed in my opinion, healthcare changes.

As a physician and patient I have seen the drastic changes and not for the better, I might add, brought on by the recent year’s Health Care laws. These atrocious laws began targeting the medical practice since I was in medical school but only worsened in last several years culminating in a complete overhaul affecting the lives of millions of patient’s as well. As a physician, I have met only a handful of people whose’ ‘Affordable Health Care Act’ (AHCA) actually benefited while the majority of people like myself have only suffered. This is not even mentioning the breakdown in the establishment of medicine as we knew.

I don’t think I am alone when I say we need change desperately!

The first sign that that things were going array was the continues reduction of payment imposed by government on doctors with an increase intrusion of the government into how doctors practice medicine insisting on many new requirements such as electronic records-EMR (which are extremely expensive to buy and maintain to say the least) before they would compensate for our services and time. Thy also try to impose how we practiced medicine by attempting to dictate what medicines we should use on our patients .No other sector of society would tolerate such intrusions and governmental dictation on how to practice trade not related to government. Subsequently because of increased paper work and requirements doctors have been forced to increase their patient volume just to maintain their overhead and make a living. This, however, has created much discontent among patients because now (we) have to wait longer hours (even longer than previously) and be seen even shorter time because the demands on doctors time has tripled and quadrupled (especially in neurology where many physicians have left the field altogether) plus their need to make a living. Before I sold my practice, at the beginning of all these changes I was already forced to hire more clerical workers just to keep up with the demand of paperwork imposed on us. This alone was extremely stressful because it meant working longer hours just to come out barely even at times.

The increased wait time at doctor’s office or to be given an appointment by a physician especially a specialist like an MDS has created immediate discontent in all involved; but mostly in us patients who fail to see the big picture and attribute all problems in medicine to the only person we see- the doctor. 

For us patients feeling like we are not as important with the ever increasing impersonal settings with little eye contact and minimal physical interaction due to the constant need for doctors eyes to be focused on the machines required to document things and send prescriptions leaves a bad taste in our mouths particularly when already feeling scared, vulnerable and ill increasing our feelings of distrust and discontent towards our health care providers who are only human and trying their very best to tend to our needs while feeling multiple internal and external pressures. So please try to put yourselves in their shoes before exploding and feeling as if your time and your personal needs are not being taken into account.

Furthermore, the fact that prescriptions are now almost required by all pharmacies to be emailed can be another off -putting experience at the doctor’s office especially when computers fail. Dealing with equipment failure in our offices is not part of our training when it relates to EMR, which invariably happen much more than you think, is extremely frustrating and costly. Dealing with these government imposed issues of technology serve only to detract from the time spent with patient greatly impacting the patient –physician relationship. And in this society which demands immediate satisfaction for our needs, a one chance encounter is nearly doomed to failure with such high expectations from our parts.

Two personal Examples of technology deeply affecting the patient-doctor relationship are the following scenarios 1) when I was in practice my computer system crashed and took nearly a week to fix so my staff and I had no idea who was scheduled for following day to call to remind of their appointments; but worst we had no idea who would be showing up to our office. So not only did we not have charts ready (thank God no EM records yet) but could not check on their lab results nor the benefits beforehand for new patients. But, at least we could pull the charts and make new ones when patients arrived. Needless to say this caused a lot of confusion, headaches, and delays to all involved. 2) Fast forward a few years later now as a patient, I went to visit my neurologist and her system was down at the university, she had no chart, no record of my tests ( fortunately I am always prepared and had my own copies) and could not email my meds. She spent half of her time trying to email my meds then finally had to write down in a separate sheet to call in or email later.  I could empathize with her pain and frustration. Knowing that she was dealing with this all day would probably leave something out so I called the office another day to remind staff of which meds I needed.

Thus, we find ourselves in a Catch 22- 

Compound these frustrations on the physicians side by fact that patients are getting sicker and using up more hospital visits because they can’t afford their medication, are in never ending donut hole, and no longer can have medication samples or assistance as easily as before Medicare part D was instituted. Patients no longer have continuity of care essential to successful treatment because they go from Doctor to Doctor therefore never building a good rapport along with a long term care plan essential for any chronic illness. Furthermore, many patients feel flabbergasted and bamboozled because the affordable care is an oxymoron. Moreover, the majority of patients and hardworking individuals are getting less and less for their money. We are paying higher premiums yet have access to fewer doctors, medications, ancillary specialists, and qualify for fewer diagnostic test. We are forced or pressured to see more physician assistants (PA’s) and Nurse practitioners (NP’s) if want to be seen sooner or closer to our homes which can be disappointing for many who expect to see an actual physician especially in regards to specialists. Yet, these patients unjustly are paying the same premiums although the insurances and government pay less for the services provided by these other providers.

Moreover, the government and insurance companies have tried to convince everyone, doctors and patients alike, that all medications (brand and generic) are equal. The result is that previously controlled patients now are having many more break through seizures, migraines, strokes, dyskenesias, hallucinations, and falls to name a few because the changes in medications are proven to be ineffective or are no longer taking medication as prescribed because cannot afford. In my experience 7/10 times these things along with hospitalization can be prevented if either the insurance companies (which now falls under the government umbrella since AHCA was passed) would simply allow us doctors to do our jobs. Sadly, unless something is done there is absolutely no need for new research or new medications if they are not to be used in the treatment of diseases like Parkinson’s. I am appalled at the new attitudes emerging in this country calling for less medication. Stating that chronic pain can be cured with exercise- obviously these people never had chronic severe pain and calling for no or fewer medications again – they have never been in our shoes with chronic illnesses. Since I cut down the dosage of my medications because of ill effects on my heart my heart is good but my PD symptoms are no longer controlled. Am I happy to be taking fewer meds yes! Am I happy that I feel like awful without it – absolutely not! Is not just the feeling but the limitations on my body imposed by my disease without medicines that I can’t tolerate and will find a way to blend the two so that I can function better for me and my families sake.

Another issue with our current healthcare system is the substitution of brand name medicines for generic ones, which was initially based on cost, makes absolutely no sense anymore in regards to patients needs because generic medications now cost as much or more as brand name medicines both requiring an enormous amount of paperwork from your physician and their staff just to allow us to have things we need to get along on a daily basis. My husband is prime example of how the system has failed many. He has severe cholesterolemia (critical numbers) which was well controlled for years until the new healthcare changes occurred. Our insurance plan first kept increasing the price of meds then refused to pay for them so came a long list of trial medication causing a slew of side effects one worse than the previous each time and not controlling his cholesterol which is sky high..(Only thing that gives me comfort is the longevity of life in His family) we are at the point that all meds which he needs have been denied and out of pocket cost is about thousand dollars per month along with the multiple high cost medications I need this is not feasible. Thus, he is now trying a variety of over the counter supplements while I am praying he does not have a fat emboli causing him to have a stroke or heart attack.

So as I said at the beginning, we desperately need reform in the way doctors and patients are viewed (rather valued) by our government/society. With new changes perhaps the field of neurology can once again flourish and tend to the needs of an ever growing elder population in which Parkinson’s disease plays a major role. One never knows if things change enough I would be happy and capable of rejoining the ranks of my fellow neurologists and MDS to help PD persons like me without having to worry how I will be able to pay for my overhead and employees salary causing my own illness to spin out of control dealing with the external unnecessary burdens which have sucked the life of those still in the practice of medicine including my husband’s. Although, I am aware that with any new scientific discoveries, making new health policies and /or making amendments to existing policies can be a slow process but one we should all strive to see happen for our health and that of our children.

 

Contact your state representatives as well as the public policy branch of the Michael J. Fox Foundation for Parkinson’s research and let them know your specific issues with accessing health care, getting medications and seeing MDS in your area. Change cannot occur without first admitting there is a problem.

 

 

A week in the life of a Parkinson’s diva- by Maria De Leon

“It is a beautiful thing when a career and a passion come together.” ~unknown

It is always nice when things work out serendipitously. What can be better than combining one’s own passions?  I tell you there is a great joy when your passions and interest and mesh together as it did this past week for me.

I was forced to be on a strict diet for the last 3 weeks in preparation for this past weeks poking and prodding in order to rule out any underlying recurrent cancer. Not being able to eat seafood, nuts, pasta, bread, or  dairy products was a challenge. Particularly when my to go snack is a handful of nuts. Plus, having teenagers around who are constantly foraging and gravitate top these same food groups did not make it any easier. I must admit it was hard and had to sneak in a couple of bites here and there of bread. Mom making fresh flour tortillas for breakfast did not help in the least.

So of course when my tests were done despite having severe nausea and feeling weak, I headed straight to an Italian restaurant to indulge in some lentil soup, and chicken sandwich loaded with mozzarella cheese, only after taking Zofran.

I was so extremely overjoyed to enjoy food once again that although the nausea seemed to have returned after eating, I could not pass the opportunity of visiting one of my favorite clothing stores-TALBOTS- love their red doors! Especially since there is none close to home. Plus,  I was sad I would have to miss yet again another great customer “party.” To my surprise, they were in the midst of hosting a fashion show. Of course this delighted me completely and quickly found a spot to sit. Initially, the nausea, heat and hot flashes from the small radiation doses I had received were extremely distracting. But as my husband always says “where there is a ‘Bebe’ (one of my many nicknames) there is a way.”  Surely I was not going to miss this fashion show and special prices event which I had stumbled into fortuitously just because I had some side effects to the treatment and was stiffer than usual.  So for a while I simply sat there quietly enjoying the ambience wishing I could feel better so I would not be sick in the middle of the floor. I stood once again and made my way to the table of delectable goodies to grab some cold water to take more pills when one of the attendants asked me how I was liking show. Trying to be polite and making small conversation so I could return to my seat, I asked how the models were chosen? she then proceeded to ask me if I would be interested in modeling for them at their next event.

Seems like suddenly I was experiencing another ‘Kamehameha’ moment all over. When we were in Hawaii over spring break while doing our usual touring, I began to experience severe discomfort which escalated to more intense pain in my back as we were walking. but suddenly upon reaching the site where King Kamehameha statue is located in Honolulu  because it is the headquarters for the T.V. show Hawaii- five- o, I became so enthralled that my pain and all discomfort dissipated completely- forever known in my family as the ‘Kamehameha effect.

Image result for king kamehameha statue in honoluluT

Having regained some energy, when the national sales manager Pam approached me about what I liked about their products and fall line, I seized the opportunity to discuss possible partnership to do Parkinson’s awareness just like they do breast cancer awareness. After discussing my role in advocacy, my platform on women’s issues in PD and explaining my love for fashion and need for women with PD to feel empowered over their disease, she was completely on board. although, they could not endorse PD as they do breast cancer awareness, she was willing to take back to headquarters and in meantime offered to partner in the winter for a charitable event with their red winter wardrobe line which could involve several stores in the Houston area. Although, nothing is set in stone as of yet, the possibility of this is taking place is terribly exciting, more importantly the seed was planted. Like all fruit trees  even though they must be watered and cared for, a fertile soil is essential for it to take root and grow. Lets hope this new idea takes and leads to greater awareness in women (gender) issues within the Parkinson’s community.

Furthermore, I was ecstatic about the possibility that I mentioned it to a good friend of mine who happens to be a drug rep for Azilect and she took was excited by this that she said she would talk to her superiors.

After spending a week in my old stomping ground (Houston Medical Center ) and seeing patient after patient with PD many of whom were young women- the time to take action is now and what better way to bring women of diverse backgrounds together and inform on PD then through a fashion show. After all, as one of the world’s best fashion designers who happens to be a Hispanic woman like myself  – Carolina Herrera, once quipped : “the impossible does not truly exist for (a PD) woman only time to achieve it.”

Together we are strong

Together we can #end PD

Looking for the Lovely in Life: by Maria De Leon

Suffering creates patience and patience builds character and character builds hope.”

Romans 5:3-5

 

It is easier to find things to be happy about when things are looking up and everything is going our way. However, when we are faced with a chronic illness, especially as our strenght diminishes looking and finding lovely things around us, which reminds us of brighter days and better tomorrow’s, is not always an easy feat.

I love the word lovely…it means beauty beyond compare. Something that is worth loving and fighting for. In the Bible Queen Esther was described as lovely. this is the same word I would use to describe the love of my life- simply lovely!

Lately, as I have once more been confronted with declining health, I started thinking about this word which unfortunately is not use very much in our society. the power of this word led me to think about the loveliness of God in my life through the years. Now more than ever, I wish to again hold on to that loveliness and beauty  as I find myself being torn yet again about knowing what needs to be done from a doctor’s perspective  while being terribly unhappy as a ‘impatient’ patient that needs to submit herself once more to the medical scrutiny and becoming a test subject to determine my full health issues and get back on track.

As I gear up for an extensive week of testing which involves, poking, prodding and a bit of educated guessing I really have to focus on the lovely things in my life to get me through this rough patch where I may become worse before I am better; or discover another bad problem which I am not ready to accept or deal with just yet. All the while trying to maintain my composure, hope, faith, and a daily routine especially as the new school year is about to commence with all of its challenges and demands.

When we are down and troubled we as humans sometimes just want to quit and give up . But this is the time when we need to persevere the most.

How do we persevere in the midst of trials and hardships?

We do so by finding the lovely in our lives. Looking for lovely is akin to remembering someone we love deeply and is no longer present or near by.

I am sure you are all aware of what I am referring to. when you love someone wholeheartedly, everything reminds you of that person.

Similarly, when you are down and trying to hold on conjure up those images of people and places which brought great joy and comfort. Think about all the situations in the past which seemed bleak  yet; you were able to overcome through perseverance. Look around at the beauty of a sunset, or the colors of the changing seasons, or the calmness of a wintery scene. All of them are beautiful in their own unique way and serve a purpose.

Appreciate the changes that are inevitable as the seasons. Look forward to new discoveries, new beginnings, times of rest and pruning as we welcome the unexpected changes and surprises.Me suddenly having a mini stroke and pulmonary embolism certainly was out of the blue and unforeseen but  I am learning to embraced it as a way to enhance my patience, since this has always been one of my worst traits. As the above verse came to mind, I guess in order to achieve patience one must suffer. I got a disease that makes me slow in more ways than one. But, patience is not the end goal rather than living a life full of loveliness and hope as my character is further enhanced and stripped of things that make me less than lovely and keep me from my work of helping others.  So as I undergo further testing and evaluation, I will meet friends that remind me of beautiful things, I will cherish the love of the man I love, talk more with God and appreciate His goodness in my life even as I write this. Then use what I learn to take the next step in my journey in life with Parkinson’s disease.

Hospital Adventures of a Parkinson’s Diva: By Maria De Leon

Last week after having a very successful trip to Baton Rouge for their 5th PD conference, I was suddenly struck with neurological symptoms resembling a TIA (transient ischemic attack) like all good doctors for that matter ‘bad’ patients, I self-diagnosed and continued with my flight itinerary. Upon returning home, I took some aspirin and proceeded to call my neurologist of my bizarre events and went to sleep. But, before I could make an appointment to follow up on my symptoms with my doctor, I had another unexplained episode. This time resembling a ‘heart attack’. This was scary as heck!  I then took myself to emergency room feeling lousy with chest pain, shortness of breath and mild tachycardia (fast heart rate) because I did not want to upset my husband who already had enough on his plate. don’t know how in really intended to keep from him since he is the only radiologist at hospital I went. of course as soon as my name came up, he was in the ER looking for me.

The initial thought of both consulting physicians was that my symptoms were related to PD. Although, esophageal spasms can occur in Parkinson’s disease causing severe chest pain which can radiate to arm, this is extremely rare and merits further studies to rule out more serious causes. Yes, women can die of heart disease and die more often than men because of unusual presentation.Also my medication Rytary can cause chest pains but no other symptoms; plus I had been on it for almost 8 months without problems. Thus, unlikely to be the cause of my new onset of symptoms.I was admitted for evaluation looking suspicious for a pulmonary embolism and proceeded to have a million dollar work up which again reminded me of the need for better understanding on the part of physicians and medical staff towards patients – particularly those with chronic illnesses like Parkinson’s. Also  for the need of us patients to develop greater self-advocacy while maintaining an open mind regarding physician’s point of view and expertise.

Both sides, I discovered still have room for improvement…this coming from someone who is both patient and physician.

First, it is hard to be objective even if you are an expert when it is your health on the line. However, having said this, you and no one else is the authority on your body. Only You know when things are NOT right!

Second, you must advocate for yourself. If you know something is NOT quite right. Find someone that is willing to listen and understand your feelings.

Third, although it is our nature to get upset when someone dismisses us or does not have a quick answer for our problem -remember that we have a chronic disease which can complicate presentation of many other illnesses. They also complicate the treatment plan for such illnesses. Nothing is black and white …even if you only have PD and nothing else. Now imagine what is like being my doctor looking at my list of meds and diseases? A veritable headache. Not everyone welcomes the challenge as easily as I do. in the spirit of making the best decision plan for my complicated disease state, a day was spent deliberating best treatment option that would have the least complications and side effects (which I truly appreciate).

As my pharmacist came to Inquire regarding my medication list because as she put it “this is a very long list. You can’t possibly be taking all of these?!” To which I replied, “yes I am!” I did not want to shock her even further by explaining that she was missing 6 other pills! Use these opportunities to raise awareness.

 Fourth, like in every realm of life there are always kind and not so kind people. Don’t take it personally. Be grateful for those who treat you kindly. Fortunately, there are always more whom are kind and willing to learn and care. Although, the haters can certainly make the days more challenging. It is best to laugh and move on. As I been doing regarding this one person who forgot her manners at home before coming to work and deal with sick patients.

There I was sound asleep for less than two hours, when in walks this person turning on all the lights stunning me and asking for my name. I was trying to get sleep out of my eyes while trying to orient myself to time and the scenario. Unable to read the clock correctly due to blurred vision, I asked her for the time, to which she replied in a loud voice several octaves from previous question, I might add, “Como se llama?”  As if I had not replied to her answer of what my name was because I was both deaf and non – English speaking. I barely answered when she plunged a huge needle in my hand almost at a 90 degree angle to draw my blood. Needless to say my vein blew leaving a large hematoma for which she proceeded to blamed me.By then my sweet nurse came into room to sooth me and reiterated my request to be gentler and use a smaller needle.

Fifth, always have advocate with you when hospitalized that knows your condition if you are not able to voice it yourself. Plus, always carry your PD (other medical illness)medicines with you. This has saved many patients including myself because hospitals don’t always carry the medications you are taking or are able to administer them in a timely manner as you may need.

The hospital was never able to get Rytary or Neupro and they were not able to get my medicines squared away till 24 hours after admission. Fortunately, I had my own to take on a timely basis.

Never dismiss new symptoms as automatically being part of PD and be ready for sometimes extensive evaluations to get to the root of things.  Remember to voice your concerns in a polite manner as you give the experts an opportunity to care for you keeping in mind that having a chronic illness that is systemic in nature can pose rather significant challenges and hurdles to overcome to achieve the best possible outcome which may take time to achieve as well.