Letting go of perfect: by Maria De Leon

Leave a comment Standard

“if you are interested in happy endings, you would be better off reading some other book .” Lemony Sniket, A Series of UNFORTUNATE Events

These last few days, although terribly exciting have been spent in a hurried frenzy. Partially, due to my daughter’s hectic schedule, planning activities for Parkinson’s awareness month, and Easter weekend around the corner. Plus not to mention pulling all night-ers while attempting to finish writing my Spanish book on top of all my OTHER responsibilities.

Yet,  when I was invited to be spokesperson for Parkinson’s foundation for Hispanic community, I jumped at the opportunity to raise awareness and encourage further participation in clinical research.

As I am KNOWN to do when I have a task to complete, I become hyper focused with  tunnel vision. However, I am learning to let go of perfect. This profound revelations has not happened over night and in no way fully mastered. If it were the case, I would get myself and family to church more often. Instead of wasting precious time fighting to get into my nice dresses and figure out a way to keep make-up from running down my face because sweaty decided to pay me a visit; which he seems to time perfectly when I want to look my best. Imagine My wild MANE not so proudly dripping like an open faucet. Of course, the beautiful Spanish fan my dear friend Alex gave me a year ago is nearly falling apart from the speed with which I furiously attempt to cool myself off and send my little friend packing. Unfortunately, he always finds his way home no matter how far I send him. Needless to say I feel, I have become like Martha in the Bible. Instead of worrying about having a perfect appearance for God, I should concentrate only on enjoying my time with Him and with those that matter most. He along with those closest to have seen me at my worst. So a few fashion faux pas from a nauseated, stiff, slow shuffling, extremely overheated women attempting to look graceful as she ascends the stairs to the sanctuary might not be such a big deal to God or anyone else for that matter.Image result for images of imperfect things

Having 7 radio talk shows in a single day, you can imagined triggered-my alter ego-control freak to go on super high alert. Even though, I managed to suppress these urges, a bit reared its head. First, I withheld my amantadine and sleeping pill so that I would be able to function better than usual so early in the am. Plus, forming cohesive sentences during my interview was critical which meant more dopamine. Then I tried 4 outfits to make sure I looked my best for national radio live streaming of face to face interview with Dra. Isabella -“The angel of the radio.” Funny thing, you could not tell what I was wearing and I wore myself out even more. Had I not try to control how I looked as much or worried about how embarrassed I would feel if I stumbled speaking do to short-term memory loss from anticholinergic. I would not have had this morning’s episode. Trying to do it all with little or no sleep in last 48hours led to me experiencing a full array of emotions in the most inappropriate of ways.

I had been craving waffles drenched [usually drizzled but I like my sugar] in caramel layered with praline covered nuts. The sugar craving only increases with extended brain activity. Since, both my husband and I been so busy this morning was our chance to connect over sugar treats which made me almost giddy. But my exuberant mood rapidly came tumbling down when the server said they did not have what I was looking for. Did they not understand that it not me but my BRAIN needing it’s  sugar fix to feel normal and only the caramel, praline nuts would suffice! Sure, I was disappointed. But, when the tears began to roll down my check, I knew my brain had enough. Of course, my husband was dumbfounded by my obvious emotional reaction to breakfast food.

I could have let it ruin my breakfast along with entire day. Instead I shushed away Mr. insane and told my brain to please send Mr.. happy down with the clowns because what we had was a BIG circus in the making.  Then, I pulled up my chair, leaving perfect behind, for a better view and brought my family for a ride in the merry go-round.

Remember not to sweat the small stuff for is in these rare moments where memories are created and bonding occurs. SO, next time you stumble make it part of the dance; but whatever you do- don’t stop dancing!

copyright-2017

all rights reserved – Maria De Leon MD

OH, the places you will Go!: By Maria De Leon

Leave a comment Standard

“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!Image result for pd tulip logo

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!

 

Remember to #uniteforparkinsons

#together4PD  on this April Month

copyright-2017

all rights reserved – Maria De Leon MD

Perils of Parkinson’s disease : By Maria De Leon

Comment 1 Standard

“When you face the perils of weariness, carelessness, and confusion; don’t pray for an easier life. Pray instead to be a strong man or woman of God.” ~Luis Palau

The longer I live this illness and work with people who have this disease in their lives whether be a patient or caregiver, the more I realize that when you wage war (in our case against PD) there will always be casualties and unfortunate collateral damage.

The last couple of weeks have been particularly hectic for me trying to juggle family, friends, teaching responsibilities, writing my second book, my mom’s sudden illness, being in a small collision accident, repairing car, and to top it all off- MY OWN ILLNESS!

Any given day can be terribly exhausting requiring some flexibility on our parts in allowing ourselves the time needed to reenergize to keep on tracking. However, there are days and even weeks where life comes at you from all directions and there is no rest for the weary making the recovery when things finally let up that much longer and painful at times.

As I have learned, life does not stop just because we do. Two, just because we have energy and are ready to go does not mean that the people who are close to us are ready to do the same. this can create some resentment on both parts. dealing with these mixed emotions and feelings can be a bit tricky. Sometimes we have to learn to do and go alone although we would prefer some company. We must utilize the little energy we have to accomplish the things we must like caring for our families and then if we have left over energy if someone else wants to come for the ride greeeaat!  if not perhaps next time. We must convey this sentiment to those around us so there will be no hard feelings. In this case, communication is of the utmost importance.

However, there may be times when you find yourself at a loss and having important people walk away from your life because they don’t get your illness. They make undue demands on your time without allowing you flexibility to still maintain a healthy relationship. For instance, one of the biggest problems my PD has caused is being unable to commit to things very often. I do so very hesitantly and when I do I allow myself maximum time as possible to rest before and effort to gather strength to accomplish task. But, life does not care about our commitments, unexpected things will happen which will push us over the edge and sometimes the greatest of intentions go out the window.

Those that are closest to me, have understood this and know I am not always able to keep up so if for whatever reason, I cancel or cant make a commitment they are ok with it without judgement. plus, we all know that sometimes our dystonia’s act up, our voices fade, and our fatigue levels  maybe through the roof and all we want to do is hide under the covers. All these things can fluctuate hour to hour, one of the things I absolutely hate the most! I can be all perky one hour and feel crappy the next so when I say I will call you or hang out later I may not be able to because of illness plus unexpected family drama comes into play as it invariably does in any one.

How do I compensate? I text friends a lot to let them know I am still there for them. with my family I use the same approach as when I travel rest well before I travel to see them and boost my doses of medications to have enough energy to give them my undivided attention whenever possible. (For my husband an daughter since they are home in the evenings I try to make sure I rest well especially if I know my daughter has events afterschool or my husband is working long hours and I have to take care of things longer). When I can, I call or visit; but sometimes this is not enough and issues surge because the other person feels neglected and unloved and may even choose to walk away from your life. This is what I call unfortunate collateral damage because all I was trying to do is fight this disease to keep going while minimizing outside contact at times in order to ensure my survival and ultimate victory.

So sometimes marriages end, long friendships die, and people you thought would be there forever move away. This unfortunately, is the price we have to pay sometimes in order to keep breathing and fighting. As long as you have tried and done all in your power to show those you love how important they are to you, there should not be any regret. May still have feel heart ache so Leave the door open …in case they decide they did want to be part of your life after all and stand side to side with you in the fight against PD. So don’t be afraid of losing something good because you may gain something better! Your inner peace…

 

Image result for free images of perils of life

We stand today on the edge of a new frontier …
a frontier of unknown opportunities and perils –
a frontier of unfulfilled hopes and threats.
– John F. Kennedy

copyright-2017

all rights reserved – Maria De Leon MD

New Year Resolutions! By Maria De Leon

Leave a comment Standard

First, let me take a moment to wish everyone a very happy and prosperous new year! I am sure that many of you as is customary made a list of New Year’s Resolutions which you wholeheartedly intended to keep. But, by now many of you like me find the resolve to keep those well –intended plans slowly begin to dwindle away as the month unfolds. Perhaps, some of you, like me, feel no need to go through the charade of making any determinations.

However, this year I would like to challenge you to develop a more proactive attitude towards achieving our goals in an effort to live a happier and fuller life no matter where we find ourselves.

Think of these as a new adventure which is going to enhance your life not cause stress or mental anguish.

Here are some examples of common resolutions people make:

I want to eat healthy and lose weight. We join exercise classes and begin to avoid all the stuff which has sugar, butter, and tastes good and replace with more incipient foods. Well, no wonder we abandon this in an instant when someone offers us a piece of moist chocolate cake, as my grandmother used to make every year around this time for my grandfather’s birthday.

Instead, let’s look at food not as our enemy but a way to connect to people, explore tastes, and discover new things. Is not what we eat but rather the quantity, I always say. Everything in moderation. Don’t eat half the cake, just a sliver or small slice. Trust me your taste buds will thank you, and don’t leave the butter out when cooking. Your brain needs fats in order to thrive. A recent, study published in magazine Neurology Today stated that people with a bit more meat in their bones later in life could potentially benefit more by protecting their brain’s against dementia. That does not mean you eat the whole tub of butter and let your diabetes get out of control but does not mean you don’t have to deprive yourself from rich foods. Eating fatty fish high in omega 3- fatty acids like salmon, sardines, and trout can be beneficial to the brain and help with memory. One of my favorite dishes and easy to prepare is salmon with mint in the oven served over rice. 

I want to stay fit or get in shape. It’s a lot easier to exercise routinely when you have a friend to do it with or better yet get a pet like a dog which you have to walk and you will exercise without trying to. Pets are not for you? How about ballroom dancing? I bet you will be the life of the party if you display some of your moves. Exercise also has been proven to prevent or at least truncate development of dementia with as little as 30 minutes a day of walking three times a week especially in women. The best way to maintain an exercise routine is finding something you love.

Another common resolution, I want to travel. Well, sometimes our health and/or our financial circumstances are not what we like making this dream a bit hard to achieve leaving us disheartened. Well, now you can have some of the advantages of traveling without leaving home. Invest in some virtual reality glasses (you can buy some at amazon for under $20) and feel like your there. Better yet, invite friends over and cook some foods indigenous to those areas that you like to visit. Better yet, if out are like me and don’t like to cook much then find a place to cater or do put luck and while you dine listen to the music of the region and even learn a few phrases. There are several little packages called “Music and Cuisine for Dinner with a Theme” which I have enjoyed using. These inexpensive treats which can be purchased on line or at Hallmark stores come with a authentic music cd of the region like Italy (several countries to choose from). They come with tips for throwing, in this case Italian – inspired soiree along with 20 plus recipes from appetizers to desserts for a whole meal experience which are easy to prepare. The experience will be just as memorable, I guarantee. Plus, you will also be learning something new another common resolution.

Self-improvement also makes top of list for New Year’s resolutions easily broken. If you concentrate on helping others and being kind to others, you will grow infinitely as a human being.

These basic changes in attitude and perspective are sure to be a hit with anyone who dares to be bold. Don’t forget to always smile and be thankful for the little things.

copyright-2017

all rights reserved – Maria De Leon MD

Reflections: By Maria De Leon

Leave a comment Standard

He who learns must suffer and Even in our sleep pain which cannot forget…falls drop by drop upon the heart until in our own despair against our will comes wisdom through …the awful (awesome) grace of God” -Aeschylus

As another year has whizzed on by, I am beginning to reflect on the year’s events particularly as so many of my Parkinson’s patients have gone to be with the Lord this year.

First, I am eternally grateful I had the opportunity to be part of the life of so many wonderful individuals and families who took me into their homes even after I stopped practicing. Particularly grateful I am to have shared this life’s journey with many Parkinson’s women who were also pillars in my community. Their faith and struggles with this chronic illness has served as a living testament to the grace of God in theirs, as well as in my life.

One such lovely lady, whom I had the pleasure of caring for; once asked her mother as a child if “God (Jesus) could come next year,” yes her mother replied. “Mom, could he come next month?” Yes, sweet child. “Could he come tomorrow? But, of course he can sweet girl. “Could he come today?” Yes, sweet child. “Then, mom could you hurry up and do my hair.”

As I learned of this story recently from the family member of my dear precious patient’s love for God, I was reminded of how that kind of love and enthusiasm is what this season is about. Even when she got PD later on in life she was always prepared and thankful sharing her love with others.

We should all strive to have such a spirit of gratitude every day of our lives not just during special seasons. I know it is hard to feel grateful or happy when tragedy strikes or when life does not go according to plan. But, one way to help us remember that adversities are not just a part of life but sometimes are meant to bring out the good in us. If we always went about our lives without a care or struggle, we would take things for granted as many of us did before we became ill. Imagine spending your whole life as an athlete training for a competition (a Race) that will never take place. Not only is it disheartening but most likely many of us would start slacking off. The biggest travesty would be to never know if we really had what it took to finish the goal.

Sometimes in order to bring the best to the surface we have to be sifted like wheat or dumped in hot water as a tea bag in order to reveal its (our) strength as Eleanor Roosevelt would say. This means that sometimes we must deal with adversity in our life’s which sometimes comes in the form of a chronic illness like Parkinson’s.

My patients have taught me that you have to take the good with the bad and make the best of it. Some of the saddest times in my life were also the most fulfilling and fruitful. For instance, when my father became ill with cancer and was ravaged by it, I spent countless hours agonizing over his care, his health, and coming to grip with the idea of losing him yet at same time I completed my book –Parkinson’s Diva – partially inspired by the loss of my dad and grandparents.

Looking back on my life, I find that almost every major decision has been guided by God. Even when I first was diagnosed with my illness and I was having trouble doing basic things for myself including driving, He was there looking out for me sending me my dear friend to help out. I was unable to get around even in my small community because I was so sleepy with the medications (Requip, Mirapex, and Sinemet) that I had become my own worst nightmare. In my mind I was checking yes to every box in the Epworth sleepiness scale – even chuckled in disbelief as I fell asleep at stop light and was startled by a loud honk behind me, once when I attempted to go down the street to the shopping center on my own. All I needed to complete the picture of narcoleptic was to fall asleep while eating and flop my head into my plate. Although, I was not far from this state; yet something inside propelled me to apply for a position as PPAC (People Parkinson’s Advisory Committee) for PDF (Parkinson’s Disease Foundation).

I was not sure what I would do if I got accepted since I could not go very far on my own or stay awake for more than an hour at a time for that matter. However, I knew it was in God’s hands. Sometimes in life we have to learn to navigate through life with faith and realize that our strength and our refuge come from above. I have had my share of disappointments, frustrations, and setbacks dealing with Parkinson’s among other illnesses; yet all I have to do is remember how far I have come, how despite the doctor’s predictions, I am still here when I was given 6 months to live 8 years ago.women

Thus, this year I am grateful for all the wonderful people I have met along the way, the stories we have shared, the battle wounds we have bound together. Plus, having shared an unexpected journey with you my readers has given me not only tremendous joy and happiness but also afforded me greater insight and compassion to the needs of those who like me are living with this terrible disease. As a neurologist, I have gained a wider perspective in life as well-that no matter how bad we think we have it, there are always worst illnesses to have and maladies to endure.

So in the end, as any doctor would tell you, in order to properly bind a wound a patient must first allow himself to stay(sit) still and allow someone else to be in control to fix the brokenness of a bone, etc.

As the year draws near, I have security and hope knowing that God has been with me in the darkest as well as in the brightest days. He alone can heal and can lift us up when we feel we have no more strength to go.

Perhaps it would be wise to start the holiday season and New Year with the thought that- life is simply too short and precious to live miserable, unhappy, and complaining about something we have no control of…

Remember, it is the natural order of things to change- there will always be losses and gains.

However, because we do have a say on how we choose to live our lives in the midst of adversity and Parkinson’s disease lets try to focus on the gains and not the losses. I choose wisdom that comes only from above ( after despair and sorrow have inundated our hearts) plus a bit of sparkle and bling. What will you choose today?

Never let your inner beauty die out. You are more than your disease.

(my Greek goddess sandals)

my-foot

As another author (Martha Beck), much more famous than I, would say, “have the courage to open up to life..” especially as we are about to start a New Year.

 

Happy Holidays from my house to yours!

copyright-2016

all rights reserved – Maria De Leon MD

 

Parkinson’s & My Love for Fashion: By Maria De Leon

Comments 3 Standard

” Style is a way to say who you are without having to speak.” ~ Carolina Herrera

Image-“Red Shoes” by Ross Webb

 

As you all know I am a fashionista at heart and having PD initially put a damper on my love of shoes and actually diminished my collection because the initial foot dystonia and pain caused me so much discomfort that it was hard to work. In my profession as a neurologist, I had to stand and walk a lot. The burning, searing pain along with involuntary toe movements made it extremely difficult to wear some of my favorite shoes. Erroneously thinking it was the shoes I was wearing the culprits of my pain, I got rid of many pairs including some very cute and stylish red shoes which I absolutely loved. In my practice I was known as much for my shoes as I was for my hugs so having to change was a huge deal. Due to my severe discomfort, I was then forced to wear tennis shoes for the first time in my life which I absolutely abhorred but unfortunately it was the only thing I could stand on my feet.meshoes

Of course after my disease was confirmed, in the process of stabilizing my doses, it was difficult to walk with my stilettos and even chunky heels if they were higher than an inch. Because of initial poor balance and mild stooped posture wearing heels only served to shift my center of gravity forward causing severe back pain along with increased unbalance. However, even though there was a time of a year span in which I had to use a walker and barely able to lift my feet I never lost sight of being able to wear beautiful shoes again. Although, I did have to accommodate and find a new way of meshing the styles I love with the practicality and comfort required for someone who has PD. Fortunately, there are so many choices to choose from compared to even 20 years ago.

PD has not stopped me from loving shoes and looking for stylish comfortable pairs that would work with PD rather it has become another challenge to thrive on. I have discovered that I am unable to wear high shaft boots without zippers – hard to put on and nearly impossible to take off. Never mind the off balance waddling that sometimes would occur if begin to shuffle while wearing them.

Thankfully, as I have improved with medication and therapy, I am so happy to put away my tennis shoes which I hope not to see again for a long time. So in the last couple of years, I have been once more augmenting my shoe collection. I find that sometimes, the best therapy for self-esteem and empowering of a woman particularly one dealing with chronic illness like those of us with PD is retail therapy especially shopping for beautiful shoes. This was certainly the case for me this past month. After being hospitalized and being poked and prodded over the last two months, I needed some new shoes to parade about as I slowly regained my composure and returned to my normal Parkinson’s diva self. Although, it began as a simple trip to the mall with no expectations, other than just get out of the house and spend time with mom it ended up being one of the most rewarding and fulfilling shopping spree I have had in a very long time. Particularly when we found this one shoe store that had so many new styles and colors for the fall season mom which happened to be 1/2 off. I love nothing more than buying beautiful shoes at an affordable rate. So I bought grey booties & stylish suede loafers, blue high heel espadrilles, red pumps, my very first pair of brown leather boots in a very long time (since brown is usually not my color), and an evening shoe which happened to be leopard print… no one can be without a high heel animal print to put some fun and mischievousness in a woman’s wardrobe.za

The outing was an exhilarating one which prepared me mentally to continue my PD fight to show PD go is boss. With my new fall collection at my disposal, I am poised once more to continue my work with women in PD alongside health professionals, law- makers and women with PD everywhere. Today, as I finished discussing my impressive shoe collection and latest spree with my sister-in-law, I came across an article I had missed about another young professional with PD who seems to love fashion and shoes as much as I do. She too appears to have amassed an impressive shoe collection as I. But, I must say that at least in her pictures her shoes are better displayed than mine which sometimes end up on the floor because I am too stiff to bend over to pick up. I, like her, am using my love for fashion to increase strides in the neuroscience of PD while empowering other women (you) with PD to do the same. Go ahead use your own fashion sense and favorite shoes to show PD, you still have the upper hand. As the moto for this blog site goes… ” a woman can conquer the world with the right shoes!”

Tips for wearing stylish but safe shoes  with PD :

Be accessory conscientious – don’t buy shoes with lots of traction if freezing nor slippery ones if tendency to fall

Don’t get frazzled and tied down – if you have tremors that are hard to control don’t want shoes with lots of stamps or dainty clasps which are nearly impossible to tie. Wear ones with big zippers on the side or one with big buckles better yet slip on if having trouble bending

Always keep a spare as I often do when I travel I wear lower heel more comfortable shoes that I can change easily when I arrive to my conferences and a more stylish chunkier heel or dressier shoe is called for.

copyright-2016

all rights reserved – Maria De Leon MD

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

Leave a comment Standard

 ” 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?

Sources:

https://www.researchgate.net/publication/16005903_Drug_holiday_and_management_of_Parkinson_disease

https://www.ncbi.nlm.nih.gov/pubmed/3793959

https://www.ncbi.nlm.nih.gov/pubmed/17370308

http://onlinelibrary.wiley.com/doi/10.1002/j.1552-4604.1986.tb02969.x/abstract

https://www.ncbi.nlm.nih.gov/pubmed/3793959

copyright-2016

all rights reserved – Maria De Leon MD

Finding Inspiration All Around Us: by Maria De Leon

Leave a comment Standard

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

copyright-2016

all rights reserved – Maria De Leon MD

Looking for the Lovely in Life: by Maria De Leon

Comments 2 Standard

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.

copyright-2016

all rights reserved – Maria De Leon MD

(inspired by Bible study of same name )

Grey Matters: By Maria De Leon

Comment 1 Standard

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!

copyright-2016

all rights reserved – Maria De Leon MD