Is there still benefit to doing a Levodopa Drug Holiday as PD treatment in this day and age? by Maria De Leon

health and PD, making most of PD, Parkinson's Disease

 ” A vacation is what you take when you can no longer take what you’ve been taking.”

~ Earl Wilson


As we celebrate Columbus Day weekend, I am reminded of another holiday we don’t uphold much nowadays– levodopa drug holiday! Since we were first diagnosed with PD and introduced to levodopa, all of us who live with this disease have come to realize the wonderful effect one little pill can exert over our minds and bodies making us forever be holding to it. Yet, as an addict that tries to recapture the first sensation or effect of a drug, we too continue to take our Parkinson’s drugs daily in hopes of making us feel like ourselves once more. But, as with anything that alters the chemistry of our brains, levodopa effects also wean over time requiring a larger dose to have similar effects on our bodies and minds. This in turn leads to greater potential of abnormal or unwanted side effects the higher dosages or length of time we take these treatments like dyskenesias. Even when you stop taking these medications, you can never go back to a de novo state – your dopaminergic and entire brain network is forever altered.

For me nearly 10 years of taking medications for my PD has meant recent development of serious side effects like arrhythmias and malignant hypertension as well as chest pains. These terrible side effects prompted me to start thinking more and more about ‘Drug holidays.’ As I have tried to regain control of my PD symptoms and my quality of life, by bringing a balance of drug efficacy and minimizing drug induced nasty effects, I began thinking about the many PD patients I have treated over the years. Several of my patients I was able to management effectively only by giving them a much needed ‘drug holiday.’ Of course a lot of this occurred before we had so many new drugs to choose from and DBS (deep brain stimulation) was not as widely used accepted or approved as of yet in our armamentarium against Parkinson’s disease. The purpose of these so called holidays was to restore balance and well -being for those having dyskenesias, motor fluctuations and other unwanted difficult to manage or live with side effects. The idea is not unlike that of Huxley’s Brave New World where people (in this dystopian society) took “soma holidays” to induce a state of total relaxation. In our case these much needed holidays were designed to improve or restore quality of life by decreasing drug dose and subsequently reduce side effects.

I am not really certain when we stopped offering drug holidays from levodopa as a another tool but it seems long gone are those days we neurologists / MDS used to employ this now unorthodox practice in the treatment of our advanced PD patients.

Why did it ever stop? Perhaps, because we felt that we could manage patients symptoms successfully with new drug treatments as well as prevent some of the unwanted problems altogether with the advent new, better, and more specific drug treatments. For the most part this has been the case since as a whole we are now able to delay dyskenesias by addition of longer acting, continuous delivery of drugs; yet there are some people like me that eventually will build tolerance to these PD drugs or somehow develop antibodies to treatment drugs as in other neurological disease states like Multiple Sclerosis – (or even be part of a small group of individuals who naturally possess antibodies to particular drugs such is the case with a small subset of people known to have antibodies to the class of medication known as beta blockers). Although no one has ever looked at this phenomena in PD patients to date, there are now new quick techniques emerging which can tell us with certainty what medicines we can and cannot tolerate. Perhaps we should start using and taking advantage of this new technology to aid our patients in being able to achieve a higher quality of life particularly in patients like us with chronic illnesses such as PD. All it requires is swabbing of the cheek and voilà. As I await for my own, I decided to undergo a levodopa holiday myself.

Although several studies have confirmed the benefit and was widely practiced during my training, some still believe the practice to be risky and controversial particularly for those in late or end stages of PD where this technique was believed to be best suited. This type of procedure always required close supervision by a physician and very often required hospitalization. We used to withdraw patients slowly of their meds and placed them on amantadine. Similarly, I undertook the same route of withdrawing myself of all my Parkinson’s medications while staying only on amantadine. I would not suggest anyone doing this on their own without first discussing in full with your MDS/ treating physician. If your physician agrees, he or she will most likely insist in a hospitalization or very close supervision. I discussed with my physician and was in the vicinity of the medical center everyday should there be any problems. The reason for the close monitoring is due a potential complete paralysis which can occur from a rapid sudden withdrawal (the common way of doing in the hospital setting). Of concern when doing this is paralysis particularly that of respiratory and swallowing muscles. I was at lower risk of developing profound paralysis because my disease is not end stage nor am I having motor fluctuations or dyskenesias and I was not taking a very high dose of levodopa. Furthermore, rapid withdrawal of levodopa can cause severe autonomic dysfunction and a syndrome known as neuroleptic malignant syndrome and/or ocular gyric crisis where eyes deviate involuntarily.

In cases of drug holidays, a gradual reintroduction is usually more successful minimizing potential for side effects than reintroducing drugs at previous dosages and schedules. Usually patients confirmed in a small study of 16 patients can go back to taking half doses which in turn result in fewer unwanted side effects.

Based on my knowledge and experience, I stopped all my meds except amantadine – felt wonderful for two ½ days especially intriguing were the fact that my arrhythmias, chest pain and extremely high blood pressure normalized immediately. After this, I slowly began having increased stiffness, slowness, restless legs, and hypophonia. As the week went by the severe stiffness of my axial muscles triggered an excruciating back pain leading to severe radiculopathy and difficulty walking due to pain and radiculopathy not to mention return of increased frequency and urgency which was not fun especially since I could barely ambulate. I then developed some mild swallowing difficulty. It was clear I needed to reintroduce my medications before I worsened. I resumed intake of my Neupro patch at previous dose which decreased my bladder symptoms and aided in my slowness and stiffness but brought on once again some irregular heartbeats. Thus, I opted to decreased dose to half which stopped abnormal heart beats but once again worsened my pain and stiffness. Thus, slowly I reintroduced levodopa but at a lower dose than previous which stopped the back pain and stiffness. However without the aid of the Neupro patch and Azilect the wearing off of levodopa was much more pronounced. Subsequently, I restarted Azilect which invariably led to an increased my blood pressure once more and irregular heartbeat. In the end I have decreased my levodopa only as well as taking alternating smaller doses of both Neupro and Azilect. I am doing great except I have to be more mindful of my dosing schedule otherwise I feel the wearing off much more pronounced- still tweaking.

Good thing is that I was able to cut down not only my PD meds but also I have been able to cut down on my blood pressure medication. On the down side, reintroduction of medications has returned side effects I no longer had such as my nausea returned even with intake of Zofran and having wild crazy dreams due to medication effect. I trust I will develop tolerance once more and these will disappear.

So this holiday weekend I am once again enjoying myself with my family thanks to having had a nice drug holiday….

When all else fails take a ‘drug’ holiday and start a new with a new lease on life and better PD control.

I like to see this practice return as an option …how about you?



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

Beauty tips for PD, Fashion tips for women with PD, health and PD, Parkinson's Disease, PD Advocacy, Uncategorized

“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


Setting Appropriate Boundaries when Living with a Chronic Disease like PD- by Dr. De Leon

health and PD, Parkinson's Disease

Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on boundaries. This class has been fun and challenging at the same time particularly in regards to the physical realm.

Of course, I am always thinking about the relation and interchange of one aspect of my life to another. As I have been preparing lessons for my students, I realized that these same rules of good boundary setting could be applied to those of us living with Parkinson’s disease.

If you lived long enough, you have undoubtedly understood the importance of having clear boundaries (limits, clear likes and dislikes etc.) in order to have a healthy, happy life. This means knowing exactly when to say yes to things and when to say no. For instance, many of you know how involved I am with the Parkinson’s community thus I had been looking forward with great anticipation to traveling to Portland for this past week’s World Parkinson’s Congress. I had my room and flight reservations all squared away since the early part of the year. Then my health took a bit of turn …as I began to feel better the question was “should I go or should I stay?” (With that little giggle running through my head). Needless to say that during the moments of feeling well, I was completely ready all for another great adventure which included meeting so many new and old friends.

Yet, I had to be realistic about my health. In the end the toll on my health, assuming I were better to fly such a long distance, would not be worth the experience. Learning to say ‘no’ to the seemingly good things that can potentially be harmful in the long run is an example of having clear defined boundaries. Plus had I gone, I would have missed all the drama and excitement of my daughter being asked out to her first homecoming dance. These moments are priceless.

Seeing the excitement and drama unfold throughout the week led me further to think about how we cope and live with PD particularly in the context of raising children and teaching them appropriate boundaries.

We all know that having kids is a difficult thing – each time you think you have mastered a particular situation there comes a curveball. We all worry about raising well- balanced, happy, self- reliant individuals. Those of us with chronic illnesses like PD know that the job is even tougher when we don’t even have enough gumption to shower or get dressed somedays.

What worries me is that sometimes especially because of our illness and fluctuating symptoms we give mixed signals to our children making them confused due to inconsistent limits. One minute we may require them to grow up faster act like adults, be the parent, the caregiver, and other times to simply be a loving child. I ponder about the influence we might exert on our kids as our mood see-saw according to our pain levels and other motor & non-motor fluctuations. Are we being loving and tolerable to their needs one minute and harsh or overly critical the next?

If the answer is yes- we may be guilty of inadvertently causing our children to grow up being guarded.

  • In addition, specific traumas like dealing with a debilitating illnesses such as PD may lead to a questioning of 2 basic principles needed for kids’ essential growth into healthy individuals.
  • One is that they have control over their lives
  • Two that the world around them is a relatively safe place.

If we are not careful, they may grow up feeling these essential foundations are distorted or shaky and thus feel that they have no say in their life’s or situations. The same thing can happen to some of us who live with chronic disease in context of being able to advocate for ourselves. This feeling of lack of control can lead to poor health care and a less than optimal quality of life.

There are two important rules to healthy boundaries that will help us experience our world differently especially when we seek care for our chronic diseases.

  1. -responsibility
  2. -respect

First, don’t put up with doctors or healthcare professionals who are jerks because they don’t offer respect to others while commanding it themselves; but remember that we as physicians are human too. In all honesty most of us are really trying our best and want to help. However, in these last few weeks as I became more frustrated after seeing several new physicians, I had to take responsibility for the way I was feeling. I had to revert to my role as a doctor to remind me how I it was that I felt and treated chronically ill patients (those of us who not only have an extensive medical history, long list of medications with an equally long list of physicians and specialists they have or are currently seeing).

Although, I considered myself to be better than most at dealing with patients with chronic diseases partly due to my own personal temperament- thriving on challenges and solving difficult puzzles. Yet, even I remember being extremely frustrated at some occasions with a couple of Parkinson’s patients whom I could not make better try as I might. This frustration and powerlessness sometimes related to patients as if I were angry or uncaring. At other times, it was difficult to convey to patients who wanted a quick response (for it’s our human nature as well as a natural expectation when you live with chronic pain or a disease permeating all aspects of life) for which I had none. I felt that same disappointment, as I am certain my own patient’s experienced at times, over the last few weeks.

Thus, I had to remind myself that it was their first time seeing me and they did not have the breadth and depth of knowledge I possess having lived with my disease for 10 years. It is important to keep in mind that even when we see doctors who are specialized in our own chronic disease such as PD – they have not lived in our shoes. They have the general understanding of the complexities of a disease like PD but have no insight into the daily intricacies of living with it as it happened to me – is like knowing everything about living on planet earth vs. actually living here. Such was my knowledge of PD until I became a patient of the same.

I determined that people like us because of our extensive knowledge are the knives easily tear the veil unmasking the illusion of physicians being in complete control and able to FIX things (people) and cure diseases. I know what being a doctor is and know how they feel because I am a doctor 100 % of the time even when I am trying to be a patient which has been more often as of late. I know that because of my knowledge, I too scare my doctors a lot of the times. Knowing that we scare health professionals is the first step to a successful patient -doctor relationship. This is the second rule- respect for the practice of medicine. This also means don’t get easily upset if they forget some important aspect of your life because they have thousand other patients to see. Plus, they may be tired from being up all night on call or simply forget because they are human too. Remind them gently if it is important otherwise let it go.

In order to forge a long lasting meaningful relationship with your physicians. Remember respect and take responsibility. Don’t come in the first visit too strong knowing everything and demanding things. This will surely break a relationship before it begins. Your knowledge is a great asset as you build the relationship but your knowledge and high expectations on the first visit is like showing a possible new mate all of your flaws on the first date. What do think are the chances of having a second date?

Finally, as I said before never have more than three complaints at a time otherwise it will diminish the effectiveness of your visit. Do assume responsibility and ask for more frequent appointments to have your problems answered. As any relationship it is a give and take and the longer it last the more familiar the doctor will be with you and be able to ask for your input more and acquiesce to your needs and give you freedom to ask reason when they seem frustrated (which the majority of time is not related to you but rather a feeling of inadequacy on our part).

Happy trailing and pass it on for better long term patient- doctor relations everywhere.


Andre Kohn 1972 -  Russian-born Figurative Impressionist Painter - White umbrellas - Tutt'Art@ (3)

Finding Inspiration All Around Us: by Maria De Leon

Beauty tips for PD, health and PD, making most of PD, Parkinson's Disease, Uncategorized

With the new day comes new strength and new thoughts.” Eleanor Roosevelt  

 We are all planned, planted and pruned for a purpose by God.

The last month, as all of you who have been following my blogs have discovered,  I had a small set back which has led to some decompensation due to having PD as a chronic underlying illness. This is not entirely uncommon especially for those of us who are as complex as I am. But, as  bad as I have felt most of you know that I am not one to give up or just sit around ….although I must admit I have been sleeping a lot more than usual. Nevertheless, I am determined to get back to my base line and able to continue traveling and speaking so besides having a ton of doctors appointments which have required someone else to drive me in one or two occasions, I have resumed water therapy.

We have a new instructor who is simply wonderful and understands well the complexity of the body especially for those of us who have neurological illnesses like Parkinson’s disease and incorporates techniques of tai-chi, yoga, and cardio all in water settings. while doing these exercises I have discovered two things. one, that I am weaker than I thought ant two that even though I feel great while doing these exercises afterwards I feel completely wasted due to severe nausea and vertigo it triggers. However, within this same setting I have encountered several of my patients who I was not only delighted to see but also glad to see they were engaging in therapy.

One particular patient has completely inspired me to continue despite the ill effects it has produced. because I know this too shall pass as I always say but recently I heard someone say that it would pass like a kidney stone. That is exactly how I feel, slow and at times down right excruciating. Yet, my discomfort no matter how painful is nothing comparable to what some of you have endured and what some of my patients have suffered. particularly, this courageous lady who has a most severe neurological disease which has now left her nearly paraplegic with severe upper extremity tremors. But having this illness has not stopped her one bit. You will see her around town frequently in her motorized wheelchair doing for herself and others. Similarly, she is there in the pool without fail trying her best to follow the instructor. Last session she nearly drowned a couple of times. somehow I doubt that this minor things in her mind will keep her from coming back. Knowing that she has endured  for a lot longer than I have and continuous to fight daily has given me the courage to persevere and deeply admire her inner fortitude. so, when Wednesday comes I will take some Zofran prior to my exercise therapy and I will be there working at getting myself well once again and encouraging her to continue while keeping a closer eye on her so no more incidents of near drowning occur like having life guards near by and having her wear a life vest.

So you see, all you have to do is look around and you are apt to find some inspiration in your life . No matter how bad we think we might be or have it there is always a reason to go on fighting. it may take a bit longer but I know I will be among you chatting and visiting once more very soon; because in the end we are always worth MORE than we feel and there are no strongholds greater than God.

Image By Andre Kohn


Looking for the Lovely in Life: by Maria De Leon

Beauty tips for PD, health and PD, making most of PD, Parkinson's Disease, PD Advocacy, Uncategorized

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.

diva me

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

carepartners, health and PD, Parkinson's Disease, PD Advocacy, Women &PD Initiative

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.


Grey Matters: By Maria De Leon

health and PD, making most of PD, Parkinson's Disease, PD Advocacy

Lately, I have found myself thinking about the areas of my life in which things do not fit neatly into a box.  As Forrest Gump said; ‘Life is like a box of chocolates and you never know what you’re gone get.’

One minute everything is all ‘hunky-dory’ and the next thing you know life is a train wreck; we are not even sure what hit us.  As many of my dear friends and their loved ones have suddenly taken ill and some gone to be with the Lord, making decisions about my (our) health and that of others we love appears more complicated than I (we) ever imagined. Even as a physician, the answers are not always clear cut or black and white.  Some of the decisions we have to make on behalf of our loved ones seem like they are more complex as we age.

Learning to make the right decisions is something that does not come easily if you tend to live your life in the grey areas as I often do these days- not by choice but by sheer life’s design. For instance, sometimes what I want as a patient is directly opposed to what I want as a doctor or know that needs to be done as a doctor or neuroscientist to advance the science. As a neurologist, I know that medicine is much an art as it is a science. Perhaps even more than we realize. As with everything in life some have more passion and talent for the art than others.  This means a lot of trial and error (more for some than others) to reach the right combination of medications and treatments to make me (patients) better. However, as a patient and an Inpatient, one at that, I want to feel better yesterday and don’t like to have to feel like a Guinea pig when trying new treatments.

In this age of Obamacare, doctors are  under a great deal of pressure to see as many patients as possible in a short amount of time just to stay afloat in the business side of the practice – but as a patient no one wants to feel like just another number. We desperately need someone not only to listen to us as people with living with a chronic disease; but to also to understand our needs. This is where having knowledge of both is greatly needed to arrive at the right decisions in the care of any patient.  I am extremely glad to know there are new centers popping up in various universities like John Hopkins University that offer classes in ethics and decision making to prepare doctors, health professionals as well as researchers to understand the complexity of decisions that need to be made on a daily basis regarding others life’s.

Sure it’s easy to recommend no driving when clinically mandatory but what if this is the only person who drives in the family on whom everyone depends on for transportation for school, work, shopping, doctors’ appointments, extracurricular activities, etc. ? Of course this decision will be met with a great deal of antagonism more from the person being asked to quit driving as well as from the rest of the family; as opposed to a person  who is retired has no young kids and has others in family who can do driving!

After watching the heart wrenching story of ‘me before you’ based on the novel by JoJo Moyes by same name.I am torn even more as a physician and patient with the struggles of others and even my own wishes should I ever become in a state where there is no more quality of life. What is morally and Ethically correct does not always align with the patients’ or family wishes. Should we be allowed to play God? Who decides? When do we decide? Are there consequences to this type of thinking? Are our decisions sound? or emotionally charged based on what we may be feeling at the time?  Me Before You

There is no easy answer and ultimately we all have to make our choices based upon our convictions and religious beliefs. However, as a Christian and physician, I know for a fact that miracles do occur, that God always has the last say, that physicians make mistakes and new advances always in the horizon. Plus, I also know that we tend to make poor decisions when we are emotionally exhausted, fatigued and in pain. I have had enough pain in my life to know that it does not take very long before it begins to grate on your nerves and those around you. However, I have also learned that nothing, even the worst, pain last forever!

Therefore, it is important to always allow some passage of time and reevaluate your wishes and decisions because feelings and circumstances change. One should never underestimate someone’s will to live and fight either or vice versa. However, this does not mean we should give up, take our own life, or worst ask others to take our life. It’s one thing to stop medications, it is another totally different to stop feeding, watering, and oxygenated if needed to survive. Many times as a physician, I had to abide by families wishes on a patient that I would never have given up on and many other times I have wonder why we were forced to hang on to someone who was only existing. As you see I have cried many times for others. I cried so very much at the movie, I just mentioned, and was so extremely disappointed in the ending – which unfortunately has happened several times with people chronically ill who want to terminate their own lives.  Aside from the fact that he was euthanized, as a physician I found several problems with this. Seems like sometimes, as he did in movie, we (he made) make  a decision based on emotionally charged depression and frustration and others feel guilty about their own health and pleasing the invalid they go along with these irrational thoughts even if they themselves do not agree. Sadly, even when circumstances change they feel they must stick to a plan agreed upon and are not willing to allow for life’s variables such as love lifting depression to derail their initial thought. As a caregiver, team player, physician, and person with PD, I encourage everyone to reevaluate their wishes and desires every so often especially taking into accounts new treatments and new life’s circumstances.

For instance, I had a patient with severely advanced Parkinson’s disease who had tried everything and was now bed bound unable to swallow and was having trouble breathing due to severity of muscle rigidity. He was placed in the nursing home thinking he would be transferred to hospice soon after. Within a few weeks of him being there, Neupro patch came out, so I had to try. Would you know it that he was able to regain motor function, feed himself and ambulate on his own. He left the nursing home and lived the next 4 years to the fullest.

Remember, ‘as long as there is life there is hope’… immortal words from an ancient slave who became a writer. (Life of Cicero)

Sometimes is good to step back and re-evaluate disease from a different perspective even if it does not fit neatly into someone else’s idea of what life should be like with PD as long as you are living to your full capability- must continue as if cure was already on the way!