defeatparkinsons

Health & Beauty Tip # 13 : The art of caregiving by Dr. De Leon

Health & Beauty Tip # : The art of caregiving by Dr. De Leon

“Do what you can to show you care about other people, and you will make our world a better place.“-
Rosalynn Carter

Today, I am writing about a topic that has gotten me so enraged, I could no longer keep quiet. Few blogs ago, I started to mention the difficulties navigating a marriage when a spouse becomes chronically ill and the overwhelming evidence that the great majority of these couples end up tragically in divorce at an alarming rate higher than our already scandalous national divorce rate.

Well, today I say…the selfishness MUST end!!!

Marriage was supposed to be the union of two souls “for better or for worse in sickness or in health.” No where was it written that marriage could be terminated if one partner was no longer attractive, healthy, working, or “abled.” When did it become all about OURSELVES! Have we forgotten the biblical principal that is better to give than to receive?! ( Acts 20:35)

Seems like our whole society is about instant gratification – if is not pleasant or slightly uncomfortable we want nothing to do with it! I am truly sick and head it up to my eye brows with SELF!

The theory is that we must do something for ourselves, to ourselves, or with ourselves problem is that this way of thinking leaves no room for anyone else in our lives much less time to be a caretaker.

As I have said before in previous blogs, my advice comes from a broad experience not only as a professional – neurologist but also as a Parkinson’s patient, and caregiver!

Whether you are a man or woman, we all need love and validation to thrive. Remember, that Even the strongest person needs encouragement, support and loving embraces or they too will crumble eventually!

During the time I cared for my grandmother who had Parkinson’s, I had a 4 year old, a full solo practice and was in the middle of building my office. Even though, I had hospice care for her 7 days a week, a sitter which cared for her while I worked along with the full support and cooperation of my husband, I barely survived as did our marriage!

Therefore, If caregiving was easy than it would not be an ART because you can’t have art without HEART.
Being end stage, she was completely bed bound. On top of this, she had severe tremors which made feeding herself extremely difficult which required someone to feed her. The responsibility usually fell upon me which I gladly did….but was time consuming. This meant that instead of finishing hospital rounds at 9, I would be working until midnight. She also had severe hallucinations……which would result in some very interesting conversations with my child that sometimes ended in fighting over dolls and other toys. I had to step in an referee and explain to my toddler that grandma was sick ( and in her mind the doll was the baby she had lost as a young woman!)
There was NEVER a DAY OFF! or quiet time to myself! Much less time as a couple or family! People were always at my house! I was in a PERPETUAL ROLE of a CAREGIVER given my profession! Always taking care of someone even on my supposed day off!

I would be tending to grandma’s hallucinations as I would walk out the door, only to walk into office to evaluate someone with same problem to continue hospital rounds on same confused psychotic Parkinson patients only to return home to same scenario!..

It was a Non ending cycle. Plus her room in my house looked like a hospital room and towards the end was beginning to acquire that same smell that you first notice when you walk into nursing home! No matter how many febreze and air fresheners and perfume bottles I used that’s because all the hospice workers were spilling things on the carpet each time….carpet had to be removed! I could not seem to get away from it all! It was disheartening because even though I loved her and no one else could manage her medical problems like me or calm her when she got confused. I needed a few hours to my self without any demands or pressures from anyone to recharge and refocus …
I did not know at the time, but she gave me the best gift ever ……how to become a better human being and doctor!

Since, she was always a GREAT cook and loved to eat interestingly enough most of her hallucinations involved cooking! I would come home and she would say could you please serve me the upside down cake I just made or take out of the oven and give me a piece. So, as to not agitate her and to please her I would scurry to the kitchen to bake or make. Mind you I have never been a great cook! So, I learned from her …I would ask well, what ingredients does that require and so on… as time went on I got better. I would be a proud day, when she would comment ,” I out did myself today!” If she was not pleased with my cooking, I would simply say, ” well grandma, tomorrow you can try again!” She would be satisfied …..

my daughter learned to play nice with her grandma and color with her and play dolls and dress up….memories still remain and we both still laugh and are happy to have had chance to be with her.

Soon, I learned to pay closer attention to the caregivers in my practice and started noticing all the same signs of fatigue, bags around their eyes, withering of spirit because we forgot that if the person in charge, captain making all the decisions, the caregiver in this case, if he/she goes down so does the ship!

Running around putting out flames and solving everyone’s problem can be exhausting kind of like having to walk on crutches by leaning on them constantly—-leaves you bruised and sore!

So, I tell all caregivers have alone time daily (even if its just one hour of the day ) if not possible at least once a week….the spirit needs recharging more so then our bodies. Look for ways to support, encourage, build up, and stimulate your loved one-all from the heart! Make it fun! Use what is around you….the simplest things can bring so much joy what matters is your time TOGETHER!!!!! The MEMORIES being forged!

remember- the key to being a great caregiver with heart is giving hope and of yourself….one life does makes a difference …holding on matters and being kind to others pays off…treat others as you would be treated…. instead of focusing on yourselves look at others around and regard them ( your loved ones) as more important than yourself!

“”Sometimes when faced with an intractable problem, the brain is not the one to solve it but rather the heart “- ( perception)

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org

Health & Beauty Tips #12: Creativity & Parkinson’s Disease by Dr. De Leon

Health & Beauty Tips #11 Living a Full Life with PD by Dr. De Leon

“Creativity involves breaking out of established patterns in order to look at things in a different way!” -Edward de Bono

The biggest challenged we all face in living with this illness is the disconnection that occurs gradually between our of minds and our bodies! How do you survive? Much less thrive in a world designed for the abled not the disabled? When each one of us still has dreams, ambitions, goals, families to raise, jobs and careers to pursue?

The answer lies perhaps in the brains ability to cope and form new connections from one neuron to another bypassing old defective ones! This is accomplished by the gift many have discovered after starting treatment with L- dopa and dopamine agonists.

This is what makes our Journey with Parkinson’s disease so very interesting. When we are tested to our limits , we must find a way to rise above our circumstances despite our not so cooperative or disabled bodies to live and be happy!
We have all heard the old adage; “necessity is the mother of invention or innovation!” When the roads between the neurons are obstructed or no longer functioning to full “speed” or “capacity” we feel the need to find another mean of arriving at the same destination in a place where we feel valued, unique and useful! After all being able to express ourselves in a singular fashion is what differentiates us from the rest of the animal world.

So, thank goodness that for a great number of us that have PD the principal treatment with dopamine replacement has created a much debated phenomenon- artistic expression.
Recently, there has been a great deal of talk and interest in this new phenomenon known as “artistic expressivity” in Parkinson patients. There is a great debate among experts as to the origin because it is not entirely clear if this is de novo expression or simply a surge of dormant innate talent. Although there are several theories one thing is for sure -all the increase in artistic phenomenology appears to be related to the intake of dopamine both L-Dopa and dopamine agonists. There have been reports of de novo sculptures and painters who previously had no experience or training prior to onset of disease as well as reports of increase desire to create and express themselves through whichever means possible whether that be through music, writing, humor or painting.

One theory proposes that this occurs due to a sudden release from social inhibitions due to the effect of the dopamine or because dopamine is not only involved in motor control but in “pleasure and reward center” being able to achieve a new goal and have a new purpose may have its own unique drive!

Others opine that simply adding the medication allows them to become more artistically sensitive because they experience a greater desire to create when the dosage of dopamine increases.

In my profession, I always had to be logical and concise in my diagnosis and decision making but the inherent drive to always look at the bigger picture and take a holistic approach to life and medicine was always present. I have always loved color and admired great works of art even if I never considered myself as being “artistic.” However, interestingly about the time I began to develop Parkinson symptoms I noticed I became much more bolder in my color schemes both in my home and office. At the time, I was building a new office which I helped to design. Turned out to be not just colorful, but uniquely bold. It was designed around my Parkinson patient’s and other patients needs in mind but not lacking any flair of personality and air of museum! Needless to say doctors offices around here have never been the same ever since. I started a trend- Before I sold my office, we even considered highlighting it in architects digest. But, since I was so ill all the décor was taken off before we could take pictures! My patients and drug reps and others used to comment on the décor and were always surprised to find out it was all my design. They even started suggesting that I have a separate desk for interior designing consultations…

So for me, I think it brings out the innate talents to the surface that somehow you once were to afraid to express!

No matter the reason for the increase in artistic expressivity, I agree with the experts, that the therapeutic value is immeasurable. This form of helping the brain cope with substantial losses has already been explored in other neurologic diseases like (vascular) dementias and strokes. Similarly, this type of “art therapy’ could hold great benefit to Parkinson patients helping them circumnavigate the motor problems or deficits. Thanks to the external stimuli the once impaired motor skills ( e.g. not able to button shirt or feed oneself) consumed by tremors, or rigidity or severe bradykenesia can become normal or almost normal when engaging in this type of therapy -like painting or sculpting. Allowing patients to perform fine motor skills not otherwise able to achieve in their normal activities. But the greatest benefit derived from allowing one to express itself artistically is the psychological and physiological well being that brings forth to all patients with Parkinson. Furthermore, being able to create makes people happy and provides hope while temporarily allowing one to forget about one’s own disabilities.

Because I have seen the value of “art therapy” in other neurological disease, I firmly believe that opening oneself to this type of expression is not only psychologically beneficial. But, I firmly believe this may be the key to longevity and perhaps slowing down the disease process by the building of new connections – recruiting unused brain to take over the function of those parts no longer functioning well! This is just my theory- but for years we thought NOTHING could be done for STROKE patients until we discovered the power of rehab and although the infarcted (dead) brain usually does not recover a great deal of recovery goes on physically on an individual basis. We already know exercise seems to help the Parkinson patient- I think of art therapy and artistic expression as mental exercise!

So, go ahead don’t be shy start a new painting, music or writing class or whatever else makes you happy and allows you to use your fine motor skills! Engage your kids, grandkids…the more the merrier!

Remember, being Happy It’s all a matter of perspective……
Is the glass half empty or half full?… a dear sweet friend of mine, who also had Parkinson’s disease, …. thought me- WHO CARES?!!! just BE HAPPY YOU HAVE A GLASS WITH SOMETHING IN IT!!!!

As doctor Gene Cohen would say; “art is like chocolate for the brain” and if chocolate has similar characteristics to dopamine-the essential deficient chemical in Parkinson patients then by all means let us continue expressing ourselves artistically to continue battling this chronic illness avoiding spiritual, mental and moral decay and find a greater quality of living for us and our loved ones!

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Los Tulipanes Rojos : Símbolo de Esperanza y Expresión Artística Por La Dra. De Leon

Al prepararnos nuevamente para celebrar el tercer Congreso Mundial del Parkinson hacemos honor a todos aquellos que viven y luchan con la enfermedad diariamente. Este evento se llevara a cabo el mes de octubre del dia primero al 4 en la ciudad de Montreal. Hay se reuniran las mejores mentes scientificas y clinicas al igual que los pacientes y sus familiars para entablar conversacion de como mejorar la calidad de vida y discutir los nuevos avances en este area de la medicina.
Hay gran jubilo entre aquellos que nos dedicamos a luchar contra el Parkinson pues este congreso se reune solo cada tres anos. El Parkinson es la enfermedad mas comun despues de los temblores esenciales entre las enfermedades de Desordenes de Movimientos abnormales. Se estima que hay aproximadamente 10 millones de habitantes en el mundo que enfrentan cara cara esta condición neurodegenerativa que ataca las celulas que contienen una quimica llamada dopamina. La falta de dopamine hace que los que padecen de esta enfermedad precenten un cuadro clasico con rigidez muscular, temblores cuando estan descansando, lentitud de movimientos , y problemas para caminar.

El Parkinson nos podra robar las fuerzas, los movimientos precisos de las manos, y el sentido del balance pero nunca el espíritu indomable que existe adentro de cada individuo que pose la enfermedad. Ese espíritu que enfrenta la adversidad con coraje y hace de los “limones que da la vida margaritas” para festejar y compartir con los demás,es el que hoy celebramos, aplaudimos y elevamos como ejemplo para otros que padecen de otras enfermedades crónicas. Por eso creo que no hay mejor símbolo que el TULIPAN ROJO para definirnos a nosotros los que padecemos del Parkinson, especialmente como Hispanos. El color rojo de la flor demuestra nuestra pasión por la vida, sacrificio, esfuerzo, amor, devoción, esperanza, valor y fe. Todas estas cualidades son expresadas individualmente por medio del arte, la cultura, la música y la poesía. El desenrollo artístico pude ser a causa del deteriora miento del los niveles de la dopamina en el cerebro o como podría ser también resultado de los efectos secundarios de los medicamentos como son los agonistas de la dopamina o L -Dopa. Todavía no se sabe en realidad si el tener Parkinson promueve ala expresión artística en pacientes que nunca han tenido conocimientos o habilidades artísticas en el pasado o los lleva a encontrarse con talentos latentes pero lo cierto que habido varios casos en los cuales después de contraer la enfermedad se han desarrollado talentos como pintores, escultores, escritores, y músicos. Algunos expertos son de la opinión que esto sucede por falta de inhibición en áreas del cerebro normalmente dadas a la función visuo-espacial dando mayor atención a otros aspectos como el placer y la motivación y prestando menos atención a convenciones sociales. Pero cualquiera que sea la causa del aumento de expresión artística ya sea como mecanismo para hacer frente a la enfermedad y evitar altibajos o como proceso natural a consecuencia de los cambios químicos que ocurren en el cerebro del paciente con Parkinson, lo cierto es que todos beneficiamos. Como dijera el doctor Gene Cohen ” el arte es como chocolate para el cerebro”y si el chocolate tiene características similares con la química esencial defectiva en esta enfermedad (la dopamina) entonces sigamos expresándonos artísticamente para seguir combatiendo la enfermedad y evitando deterioro espiritual, moral, mental y encontrar mejor calidad de vida.
Así es que este octubre les reto a que porten un tulipán en su vestuario, planten tulipanes rojos, o saquen sus pinceles y pinten tulipanes en su vecindad o lugar de empleo para conmemorar las familias y los pacientes de viven con el parkinson. A la vez estos murales, flores y obras artísticas servirán de inspiración para los que quieran dejar de luchar porque la enfermedad ha cobrado demasiado ,la pasión por el arte y su colorido los ayude a toa seguir esforzándose porque sin pasión no se puede vivir.
Y nos vemos en Canada!

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—Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at http://www.pdf.org or at www.wemove.org

Movie Review of “Awakenings” : by Dr. De Leon

“What lies behind us & what lies ahead of us are tiny matters compared to what LIVES WITHIN us.”- Henry David Thoreau

I had the chance to watch AWAKENINGS (PG13) for the second time not long ago. I realized that my life had come full circle in the nearly 20 years, that had passed between those two times. The first time I saw this movie, which was inspired by true events that unfolded in the lives of a group of people after the great Flu Pandemic of 1918, I was a student at medical school eager to learn all about the brain. Few years later as a neurology resident, I discovered the actual book written by Dr. Oliver Sacks by the same name and could appreciate the details and intricacies described therein with greater appreciation, knowledge and understanding having treated a few Parkinson patients myself by this time. Although, this movie was great in its entirety and extremely moving the first time. The second time, the viewing experience unlocked a gamut of emotions within me ranging from pride in the human spirit to poignant realization of the limitations still present today within science and medicine despite all of the recent medical and neuroscience advances. It saddened me to think that still 60 years later, the gold standard of treatment for PD remains the same medicine discussed in the movie. Although, the advent of L-dopa has helped many a life it has not been without side effects similar to those experienced by Leonard played in an Oscar nominated performance by Robert De Niro.

For you see by now, Parkinson’s disease was no longer just a professional passion of mine but a personal journey having myself been diagnosed with PD. Watching the interplay between Leonard, a catatonic patient who “awakens” after Dr. Malcolm Sayer played by Robin Williams administers an experimental novel drug (L- dopa), I could empathize with both the patient and doctor – now having had the chance to play both in real life. I was able to feel their joy, frustration, and ethical conflict having found myself struggling with all of these as a doctor trying so very hard to make a patients life better wondering what the limit of ones own ability to push the confines of science and medicine in hopes of offering someone including my grandmother, who also had PD, just one more month of quality of life perhaps? Of course now as a patient, wondering all the while how far would one go to feel NORMAL again?

Leonard is the first of many patients to AWAKEN from a long sleep like state due to a rare disease (encephalitis lethargica) caused by the flu. After nearly 20 years, Leonard becomes normal again by this miraculous drug. However, like all drugs there is a down side to taking them and the side effects soon take over the life of this patient causing severe dyskenesias. Soon Dr. Sayer along with the staff of the facility in which these patients are housed have to confront the issue of cost in maintaining these patients on the medication. We as audience are drawn in and forced to think along with Dr. Sayer, at what price do we pay for QUALITY OF LIFE? And WHO IS TO DECIDE WHAT QUALITY MEANS TO EACH INDIVIDUAL? This issue still rings true today…in the time of Obama care…where there may not be enough neurologist/Parkinson specialist to care for such patients what do we do?

As the story unfolds you see an initially shy doctor with very little zest for life begin to blossom and becomes a tower of strength when fighting for the livelihood of his patients. He in essence becomes the champion of life and all that is good in it. He gives voice to the individuality of the human spirit and recognizes its merit even if short lived, as he desperately struggles to save each patient as they one by one slowly slip back into a deep sleep. In the end, he finally gets what life is all about, just as I have realized what is truly precious after witnessing countless lives ravaged by this horrible illness called Parkinson’s.

All of us who have ever played a caretaker role have struggled with these very issues. We have perhaps shared in the joy of seeing loved ones improve from chronic illness like Parkinson’s and Alzheimer’s only to watch them slowly wither away in the end. To what ends do we go to get medicine and provide care for our loved ones who we know have devastating, incurable illnesses? How much freedom do we allow them especially when we know full well they are not capable of taking care of themselves? What are the alternatives? How about for those of us with similar conditions, are we prepared to take the good with the bad? Would we be ready to go gently into the night or will we fight with all our might to our last breath to preserve our dignity, humanity, and individuality? These are the questions we must all ask ourselves.

For these reasons, I think that Awakenings is a MUST see movie because it touches on all of our humanity, our frailties as well as the strengths of the human spirit. Especially, if you or a loved one have recently been diagnosed with Parkinson’s disease isa good introduction and sage way for discussion….can be done at home or at support groups. However, this must not be done without a whole box of tissues near by.
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Health & Beauty Tip # 9 : Unveiling the truth behind Visual Problems in Parkinson’s Disease – By Dr. De Leon

Health & Beauty Tip # 9 : Unveiling the truth behind Visual Problems in Parkinson's Disease - By Dr. De Leon

At least 2 years before my Parkinson’s diagnosis, I began experiencing difficulty with night vision particularly in depth perception which progressively got worst thus making driving at night not only increasingly more cumbersome but also more hazardous. Of course being a neurologist my mind went immediately to a differential diagnosis including rare disorders like Refsum’s Disease known for its accumulation of long chain fatty acids which leads to night blindness.

But never was PARKINSON’s DISEASE in my differential – well at least not idiopathic (cause unknown) regular garden variety PD! YES! Several Atypical Parkinson Syndromes or Parkinson Plus Syndromes ( e.g. PSP – Supranuclear palsy known for its limitations in vertical gaze causing patients to frequently trip on side walk or drop food on their shirts, or CBGD – corticobasalgangliadegeneration which is known for having visual spatial problems- not recognizing a part of your body as your own!)

Never really seen visual disturbances early on in PD as a preclinical- pre motor symptom (now with hind sight I can recall only one patient presenting this way but no one -several PD experts including myself- thought that the visual problems were part of the PD scenario!)
Although, for years many Parkinson patients have complained of visual deficits, they typically have been non specific and because Parkinson patients as a whole tend to be older, the problems have always been assumed to be related to AGE!! ( e.g. cataracts, glaucoma, macular degeneration, other eye disease).

I began to experience even more pronounced night vision loss without a clear etiology. My ophthalmologist assured me there was “Nothing” wrong with my eye sight other than mild near sightedness “normal” for my age. There were no abnormalities on my MRI of Brain to explain this and I did not have any neuromuscular deficits although at times my symptoms acted like I had a visual field defect! As my disease progressed with increasing slowness, stiffness, gait difficulty and worsening dystonia, I realized that so was my ability to judge distance especially at night. I knew that these symptoms had to be related. Although, at this time my neurologist still could not relate it to PD nor frankly could I! At the beginning, I thought it might also be stress or fatigue related from overworked muscles and severe eye strain since symptoms appeared to wax and wane.

Initially, I was left with my frustration and only means of treatment was to wear corrective lenses at night. However, the sense of NOT Knowing Exactly how close the cars where to me hit me one night as I was nearly run over by an 18 wheeler which had appeared to be several feet further than it actually was. As I began to merge unto oncoming traffic, the sound of the horn and the lights glaring at me of the 18 wheeler, nearly blinded me but somehow I managed to swerve off the road just in the nick of time before being flattened like a pancake. After that near death experience, I did not drive at night for a long time! I still did not know for sure that my visual problems were related to my Parkinson symptoms. Nevertheless, I had a high degree of suspicion. My visual perception failed me at the most inopportune times but particularly troublesome were the times I had to park the car in the garage. I always felt a sense of accomplishment getting my car into the confines of the garage. Only to discover that what appeared to be a perfect alignment from inside the vehicle was a mere façade as I performed yet another futile attempt to climb out of my car. For you see, I had once again wedged myself up against the wall without even realizing it. So, I try to back out without hitting the garage door which was not always successful. Sometimes, I would get stuck trying to climb out of the passenger side due to the stiffness and would be stuck there for a while! Other times, don’t even know how I would park my car nearly horizontally in my garage! I would depend on my husband to realign the car so I could exit successfully from the garage once again when I need to use the car the next time. Fortunately, I never knocked down a wall. Although, I came close several times leaving several dents in my car and the garage for posterity. Since I was on L-dopa, this did not happen daily but often enough that I had to paint the far left side wall of the garage neon orange to keep me from parking so close to it. The color would serve as visual contrast reinforcement and thus help me avoid hitting the door knob in the closet in the garage which is now all bent out of shape from parking car to close to the wall. During this time of visual fluctuations, parking close to two cars in close proximity was an impossibility never not without denting one on the way in or out!

For this reason, I had my ophthalmologist make me prisms to help with the depth perception which has improved my ability to judge distances dramatically!! This is what I would typically recommend for my PSP patients so I thought I would try… I did not want to have to give up my drivers license.

My husbands solution of course is even more practical. Trade in my Lexus for a “Smart Car.” This way I would be able to fit ANYWHERE!! If I could only get in and out of one without difficulty, I would drive the “Hello Kitty” model for a while just to make a statement and lead the world in ONE BIG PARKIE parade!.

Although, the idea of riding a HELLO KITTY “Smart Car” sounded good & funny in theory, in principal not so much. Therefore, I knew something had to be done before I lost my independence completely and had to be chauffeured around. Even though my friends were terrific, I did not want to be driven around if there was a solution for my problem. So, I began researching the matter. Initially, I did not find a lot of information until the last few years when the concept of non motor symptoms and premotor symptoms have finally taken root. This is the acceptance that these symptoms which are non dopamine derived can at times precede the motor symptoms, can be the MOST troubling and disrubtive to a persons quality of life yet are the most treatable as in the case of Visual disturbances. Even tough, vision problems is a dopamine problem it is classified in the non-motor symptomatology because it is a sensory issue- how we perceive and process the world!

We have missed visual problems in Parkinson’s because traditional tests do not tell the whole story in a persons ability to see. Acuity does not tell us how some one sees in regards to contrast in background ( i.e. shades of grey). It turns out that Parkinson’s causes a decrease in contrast perception and color discrimination because the retinas uses dopamine as a transmitter!- something which I had forgotten from my neurobiology. There is also decrease in actual acuity and voluntary eye movements with poor convergence which leads to blurred vision and at times double vision ( diplopia). There is also irritation of the surface of the eye causing a decrease blinking. Compromised vision can then lead to increase occurrence of hallucinations especially in elderly, with certain medications, or if a person has other eye problems or dementia.

The best treatment and gold standard for visual problems in PD is Levodopa. This can improve volitional eye movements and rate of blinking, Also any of the dopa- agonists. Ever since I started Neupro Patch all my visual field defects and vision problems including depth perception and trouble driving at night have dissipated. However, of note as of my last eye exam my acuity had changed significantly with advance of my illness! I assumed that the reason my symptoms were fluctuating despite being on L-dopa was the off states now that I have steady states of dopamine with agonist I don’t have fluctuations in vision….my hypothesis!
I recommend to everyone that you discuss with your physician any vision problems,
maintain good visual hygiene
yearly ophthalmologic exams,
corrective refraction and/or prisms
artificial tears if needed
rest your eyes!
if you do this you too will have no need for a “Smart Car!”

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@copy right 2013

suggested reading for further information on the subject:
Visual Symptoms in Parkinson’s Disease by RA Armstrong-2011
http://www.ncbi.nlm.nih.gov>journal List> Parkinsons Dis> v.2011;2011

Dr. M. De Leon is a retired movement disorder specialist,
PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network).
You can learn more about her work at http://www.facebook.com/defeatparkinsons101
you can also learn more about Parkinson’s disease at http://www.pdf.org or at http://www.wemove.org

Love & Parkinson’s: by Dr. De Leon

“Love will find a way through paths where wolves fear to prey.” Lord Byron

Today on this day of love and friendship I want to remind everyone about the power of LOVE in our lives- as it is the biggest intrinsic dopamine producer of our brains!!!

We all know that feeling of being completely head over heels with someone and feeling on top of the world, unable to eat or sleep, yet having complete clarity of mind. This my friends is the natural effect of dopamine. It feels GREAT! this is the feeling we strive to imitate each day we take our medicines- no wonder cocaine a dopamine receptor drug is so addictive!

According to the Greeks there are 8 types of love – and in my opinion all of them are capable of releasing copious amounts of dopamine in various degrees. This is the reason why we must not only stay connected with one another and develop these types of relationships but also find our passions to maintain a steady stream of dopamine in our brains keeping us healthier and more satisfied with our lives.

We all know about Eros which is our romantic love but this one is as quick as taking apomorphine- comes on strong but burns out fast and in order to preserve the feeling and connection we must switch to another type of love or dopamine replacement medication one which will be not so intense but last longer and be steadier. But if you are with your best friend – sparks will fly each and every time sending dopamine in truck loads with a single smile or look as it does me and the love of my life!

Philia– or brotherly or affectionate love was considered by Greeks as a much powerful type of love because it involved love between equals. This is the type of love between good friends. Having a friend that will keep you accountable in your disease is crucial to your well- being and success. Having a friend that sees you through your tough times with PD is invaluable. Be thankful for your friends today and make sure you let them know how important they are in your life. If you don’t feel like you have any close friends is time to find a new one in your support group or church. Don’t be afraid to make the first move.

Storge or familial love is the kind of love between siblings, parents and children. This can also occur between childhood friends lasting ’til adulthood. This is equally important to a better life with PD because lack of support from our family and special friends can lead to depression, anxiety, and isolation. Make sure that you include them in your care and diagnosis to help you become more empowered as an individual.

Pragma or enduring love is the kind of love in marriage a matured love (hopefully). This type can also be found in friendships which have endured for decades. I am lucky to have a few of these. How about you? This is a reciprocal kind of love which forces you to know yourself and boundaries well. Thus making you a more balanced and happier individual.

Then there is agape or selfless love. This type of love is unconditional like the type God has for us, or what we have for our kids and our pets have for us. This is filled with boundless compassion and endless empathy. This is the purest type of love. I have discovered that my little kitty knows exactly how much love I need. It is amazing how he knows when I am sick and in those days he does not leave my side for a second. It is comforting to know that there is someone out there that will love us no matter what- flaws and all. When we are loved unconditionally it gives us strength to keep fighting and moving forward. So be thankful today for those people that empower you to face an ever changing illness without fear of what might happen because there is someone to care for you and be there no matter what. For me my greatest love is God. I am not afraid of what tomorrow might bring because I know He has my best interest in mind and is strongest when I am weakest.

Finally, there is Philautia or self -love. This is the type of love many of us lack and I myself had to rediscover when confronted with a chronic illness. My being was wrapped in being a doctor and had to rediscover myself-

I found that …

•I am stronger than I thought •Despite years of hiding my physical flaws I embrace them •I love being a mom •I discovered that there is a life after PD •I can be me and still use my medical knowledge •I am creative after all •When I was young I was very shy and afraid of public speaking- now I have become a voice for women •I am excited about living (can’t sit around waiting to die) •I believe in the power of love, prayer and faith! •I believe in fighting for what you want and NEVER EVER Giving up – that there is always another dream!

You will discover that once you love yourself you will want to fight this disease with all of your might-you will have a positive attitude and view of your future. Once you are comfortable loving yourself can you begin to grow and expand your universe and give love to others!

Happy Valentine’s Day Everyone!!

Health & Beauty Tip #5: When livin’ with Parkinson’s or just plain livin’ -Do the good you can.. by Dr. De Leon

Health & Beauty Tip #5: When livin' with Parkinson's or just plain livin' -Do the good you can.. by Dr. De Leon

Rule # 4 : Life is all about how you handle plan B

A lot of you might be feeling frustrated, bitter, angry, sad or just plain anxious because prior to this so called Parkinson’s disease so many of you like myself had big dreams, ambitions and hopes for a different life than the one you might be living now. Perhaps, you were a doctor like myself whose career got cut short . So, instead of being head of a department at a prestigious university you are just sitting around wondering why things have not panned out. Perhaps, You were going to be a best seller writer but the opportunities have not presented themselves since the disease has limited you physically or mentally…To you I say, if you can’t do the good you WOULD do the good you CAN! Would you be willing to write a newsletter for your local Parkinson’s support group? Maybe, You are a nurse who had to give up her career because of the physical demands of PD but your training is still invaluable. You can teach local high school students, college students or even nursing students about caring for chronically disabled people with PD. What if you were a law enforcement officer that could no longer uphold the law and protect its citizens because now you have too many tremors or are to unstable when you walk…don’t lose heart you can still influence the law and fellow officers to recognize signs of neurological deficits like drooling, uncoordinated gait and hard to understand speech and prevent mistreatment and prejudices against patients that may look inebriated (drunk) but unfortunately suffer from Parkinson’s disease and other similar conditions from being wrong fully detained or Incarcerated.

The choice is yours…wallow in self pity or DO the GOOD you CAN where you are with what you have…..You are only limited by your imagination and willingness to help yourself and others. This the reason some people say we have 2 hands, one to help ourselves and one to help others.
The key to being happy with plan B when it’s suddenly thrust upon us is realizing that often times It is during life’s interruptions that we may find our true calling and joy!

So, are you willing to bloom where you have been planted? To follow the example of great people like Joni E. Tada, who became a quadriplegic after a diving accident and instead of giving up and throwing in the towel, learned to paint with her mouth. Not only is she now a world renowned artist but has authored numerous books and has become an active advocate for disabled people all over the world.

Remember, next time you feel sad or questioning the path to take…that are always many opportunities all around you to help others and use your God given talents. Nothing that you have done, achieved, or learned prior to your PD diagnosis has been a waste. So, go ahead allow yourself the freedom to start something new and joy will surely follow. Everything has been in preparation for something BIGGER and BETTER! You must learn to take life as it comes …there will never be a perfect time where all conditions are free of risks and absolutely safe. Tomorrow is not guarantee to anyone of us so we must embrace plan B and learn to bloom in adversity …after all “a flower that blooms in adversity is the rarest” and most beautiful of all. (Mulan)

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Dr. M. De Leon is a retired movement disorder specialist,
PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network).
You can learn more about her work at http://www.facebook.com/defeatparkinsons101
you can also learn more about Parkinson’s disease at http://www.pdf.org or at http://www.wemove.org

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