Perils of Parkinson’s disease : By Maria De Leon

“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

 

Reflections: By Maria De Leon

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!

 

 

Caregiving is not for the faint of heart: 7 tips to make it work: By Maria De Leon

“Don’t dwell on the disease, value the moments. the pearls of wisdom, their smile and humor.” ~unknown

 

Whoever says caregiving is easy has never really been a caregiver; it is absolutely hard work. But, if you do it with love it will be the most rewarding thing you ever do in your life. I absolutely guarantee it.

Many of us will at one point in our life be called to play this role and provide full or part-time care for someone we love (i.e. – spouse, parents, grandparents, children, grandchildren, even close friends). Some of us may even have to provide care to multiple generations simultaneously known as the ‘sandwich effect’.

The caregiver role typically falls under the responsibility of women. Because women are often viewed as natural nurtures, we are often put in this role even if not fully equipped. I recently had the privilege of speaking at a Parkinson’s caregivers support meeting in Dickinson, Texas and was very pleased to see many men attending the meeting. With the perceived increased in young women with PD, I believe that this current trend will be shifting as men are suddenly thrusted into this role. The effect on the caregiver independent of age and gender is nearly always the same.  The caregiver struggles with issues of depression, anxiety, and isolation the longer the length of time performing this duty. These issues are further compounded by rising cost of health care, uncertainty of future, and inability to work as desired to better the financial situation due to the pressing need of that person to remain at home to care for loved one.

I have on an occasion or two been responsible for the care of several loved ones in my family. Although, in two instances the duration was relatively short, less than a year; at the time it felt interminable. The stressed soared through the roof as the demands physical, mental, and emotional increased along with my demands at home as a mother, wife and physician piled on. Also, my patience decreased with increased fatigue and physical exhaustion and in my grandmother’s case, I had help from a lady I hired to watch grandma while I worked and from my spouse during weekends and after hours. Yet, at times I felt as if I would be completely shattered under the heavy burden of life’s duties and responsibilities compounded by 24/7 care of a loved one at home. Having psychotic patients at the office, hospital as well as at home can be quite maddening at times. With my father the burden of long distance was also difficult since I was the primary decision maker regarding his health. Traveling weekly and staying away from home weeks at a time was also difficult.

Now, imagine the type of stress, frustration and anxiety a caregiver must succumb to in the presence of a chronic progressive illness such as Parkinson’s disease in a loved one who have no other outside help or assistance?

Compound this feeling and multiply it ten-fold in the case where both partners are chronically ill or are elderly – the result is a veritable hot mess ready to implode on itself at a moment’s notice. Sometimes it is absolutely impossible to tend to someone else’s needs when our own medical and personal problems are at stake. I know this all too well from my own personal experience. In dealing with my father’s cancer week after week my Parkinson’s symptoms suddenly jumped up a notch. This meant it was harder for me to stay in the hospital with him, drive to and fro my house to his, and tend to his needs and whims; not without causing me to feel at times like his illness was a major imposition in my own life. This meant forgoing medical treatment for my own medical issues, leaving my daughter and husband unattended frequently meanwhile the need for larger doses of dopamine rapidly escalated to keep up with the physical and emotional demands.

I have worked with thousand’s of patients and family members who have been caregivers (partners) for various lengths of time and the feeling is unanimous. Caregiving can be exhausting, soul sucking even if you allow it by not getting outside help and allow friends, and other family members to become part of the inner circle of trust. These valuable individuals can lend a helping hand, a shoulder to lean on, prepare a meal, run errands, do grocery shopping, sit with your loved one or simply hold your hand in times of overwhelming stress. Never forgetting that the key to successful long term care depends on a few factors.

Even when you have aid from outsiders, there is an amount of stress that comes about due to blurring of boundaries. It is difficult to maintain a private personal life or achieve quiet time if continuously bombarded with people at your home. We all need respite from time to time even if it’s just to sit alone undisturbed for an hour of peace to be alone with your own thoughts.

#1 open communication –know your loved ones desires and wishes and vice versa- dreams should not die because of illness rather be modified.

#2 get support – no man is an island, we are all connected and when one is ill the others suffer as well.

#3 take care of yourself first- can’t burn candle at both ends otherwise the flame will be extinguished much sooner and your loved one will suffer and wither faster.

#4 plan activities together and separate- have friends over, do book clubs, bingo, puzzles, etc.

#5 don’t sweat the small stuff -Laugh and share stories. So what if the house is not perfectly tidy as long as you and loved one happy.

#6 concentrate in the love- look at the situation as a glass half full not half empty.

#7 this too shall pass!!! When the loved one is gone like my dad and grandmother you would give anything to have them back. So savor the moments together. Life goes by in a blink of an eye!

Today is my dad’s death anniversary, he has been gone from us for 2 years but the laugher and the love remain. Miss you and love you dad!

Leave you with a Prayer-

 Unknown and often unnoticed, you are a hero nonetheless.

Your love is GOD at is BEST.

You walk by faith in the darkness of the great unknown,

and your bravery, even in weakness, gives life to your beloved.

You hold their shaking hands and provide the ultimate care; 

With your mere presence you provide immeasurable comfort

and courageously face the giant of PD and its despair.

It is your finest hour, although you might be unaware.

You are resilient and beauty excelled;

You are the caregiver and have been blessed for simply being there.

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

 ” 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

Finding Inspiration All Around Us: by Maria De Leon

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

Como ser una Mujer que no se Rinde Frente a la Enfermedad del Parkinson: Por Maria De Leon

“He peleado la buena batalla, he llegado a la meta- he mantenido la fe.” 2 Timoteo 4:7

 

Siento como que he estado alejados de ustedes mis estimadas amigas por largo tiempo. Aún más por los estándares de hoy en día impuesta por la sociedad y las redes sociales que nos lleva a querer todo de inmediato sin tardanza ni retraso. Así es que les admito que tal vez estado fuera y lejos de ustedes más tiempo de lo que creía.

Pero a veces para continuar sirviendo y siendo de beneficio para otros necesitamos tiempo para restablecer nuestras almas agotadas.

Precisamente esto es lo que he estado haciendo las últimas semanas del mes. Para poder ser mejor persona, escritora, mentor, y orador. Además tenía que tomar tiempo para celebrar un año más de vida que Dios me concedió, pues hace una década me dijeron que solo me quedaban 6 meses. Aunque ya no es tanto celebrar el número exacto de anos sino que estamos vivos y podemos seguir luchando y disfrutando de las riquezas del Todopoderoso.

Este año ha sido increíble permitiéndome viajar a varias comunidades donde habitan personas con párkinson para alentarlos y motivarlos a seguir luchando. Durante las cuales he tenido el placer y orgullo de conocer mujeres valientes y fuertes de espíritu que viven y luchan del diario con esta enfermedad.

Todas ustedes son mi inspiración – lo que me motiva a seguir a delante- so lo tengo que recordar a mujeres como mi amiga Nan Little que a pesar de tener párkinson pudo escalar la montaña del Kilimanjaro hasta la cima.

Lo que he aprendido a través de mi jornada en esta vida especialmente en los últimos años desde que me diagnosticaron a mí la enfermedad, es que las mujeres fuertes nunca se rinden frente al fracaso o la tormenta, ni se olvidan de sí mismas y mucho menos de los demás.

Mi espíritu guerrero viene por medio de mi fe la cual esta contantemente siendo probada y les juro que no es perfecta y muchas veces fracaso y hay días que es necesario empezar de vuelta varias veces para poder seguir costa arriba.

He aprendido 5 lecciones importantes que toda mujer que no se da por vencida jamás tiene que aprender. Esto lo aprendí de un estudio bíblico sobre el libro de Ruth.

Ruth era una mujer que había perdido todo su marido, su familia, su hogar, hasta su fe (por un breve tiempo), pero nunca perdió la esperanza. ¿Cuantas de nosotras nos hemos encontrado en la misma situación? Estoy segura que alguna de ustedes como yo se sintieron solas, abandonadas y quebrantadas.

¿Qué es lo que entonces debemos de hacer para continuar la batalla y perseverar?

Especialmente cuando las fuerzas se nos agotan y quisiéramos quedarnos para siempre metidos bajo las sabanas y no enfrentar al mundo nunca más o simplemente no SENTIMOS las ganas de luchar un minuto más.

  1. Tenemos que aceptar nuestra presente circunstancias. Nadie disfruta una vida difícil, lección dura o tener párkinson. Pero a veces es preciso tener estas lecciones o dificultades para reforzar nuestro carácter y sacar lo malo. Yo por mi parte aunque no le deseo a nadie esta enfermedad ha sido una bendición pues me ayudado a ser mejor, tener más gratitud y vivir con mayor dicha que anteriormente.
  2. Necesitamos aprender disciplina y continuar aunque no tengamos o sintamos ganas de hacerlo. Hoy en día damos demasiada importancia a los sentimientos- como nos sentimos, que sentimos… pero a veces los sentimientos pueden ser engañosos y nos pueden paralizar. Tenemos que ser disciplinadas en nuestras vidas. Por ejemplo cuando estudiaba medicina aunque no me gustara el horario, el clima, las clases tenía que estar allí. A veces tenía que atravesar todo el centro de filadelfia a las 3 de la mañana para poder llegar a tiempo y pasar por las montañas altas de hielo congeladas en las esquinas bloqueando la pasada.
  3. Debemos tener generosidad emocional hacia los demás. Es fácil dar lo que nos sobra o tenemos de más, al igual que hacer donaciones y escribir un cheque. Pero es mucho más difícil dar algo que no tenemos y aún más cuando lo que nos piden es algo que nosotros también necesitamos. Me recuerdo un día como los que a veces tenemos en lo cual todo es trabajo y dificultad, donde no podemos ni vestirnos ni toleramos las medicinas y todo se nos cae de las manos dándonos más trabajo. Pues así había empezado y no podía salir de casa por lo mal que me sentía pero estaba en un grupo de estudio bíblico de mujeres y volví a llegar tarde. Ya iba molesta y frustrada conmigo misma y con la enfermedad pero al entrar al fin me relaje un poco pero no necesitaba un sermón amonestándome acerca de mi tardanza. Pero una dama ya de edad de repente me dio la sorpresa al reprender me con agresividad por llegar tarde y me recordó que si ella con su edad podía llagar yo también debiese de hacer lo mismo. Claro, esto no me callo nada bien y en ese instante quería descargarle toda mis frustraciones. Pero calle. Le pregunte en seguida si se sentía bien pues era fura de carácter que estuviera tan molesta. Al instante soltó el llanto pues había sido diagnosticada con cáncer. En ese momento todo mi enojo se derritió y me dedique a consolarla a pesar de que solo quería ir me a la casa y seguir vomitando. Lo interesante es que al transcurrir la mañana entre más le dedicaba tiempo a ella mis malestares y achaques se volvieron insignificantes. Al fin de todo yo me sentí mucho mejor el resto del día. La mejor manera de suplir nuestras necesidades emocionales es dando a otros lo que nos hace falta. Si amor. ¡Da amor!
  4. Estar siempre con las manos abiertas. Cuando uno está accesible hacia otros, las personas se acercan con más facilidad y frecuencia para ayudar y apoyar. No podemos aconsejar a otros si no se nos pueden arrimar o si siempre estamos molestos y amargados. Recuerda que la vida siempre se va a empeorar/complicar antes de mejorar
  5. Finalmente, sigamos adelante en Fe aun cuando es imposible ver la luz al final del túnel. Muchas personas se han dado por vencidas ya para cruzar la meta. No sé por qué pero nosotras las mujeres tenemos esa tendencia a darnos por vencidas más fáciles y antes de tiempo tal vez porque como yo son impacientes cuando lo que esperamos no se nos da de inmediato. Yo tengo casi treinta años esperando un sueño y seguiré esperando hasta que sea realidad. La vida es como escalar esas montañas peligrosas y resbalosas pero para poder vencer y llegar a la cima se necesita escalar con cuidado un pie adelante del otro sin mirar atrás. No quiero que nos volvamos como la mujer que intento cruzar el canal Ingles y duro días y atravesó por muchas dificultades y a la hora de lograr el propósito fallo por que la neblina oscureció su visión estando la meta a solo unos cuantos pies más.

 

 

My Experince with the Evolution of Retail Prescriptions:By Maria De Leon

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Every time I go to the pharmacy as of late, the joy seems to be knocked right out of my soul for at least an hour. Used to be that I could just call and have my prescriptions delivered to my office no questions asked. Then as the number of medications began proliferating due to my Parkinson’s diagnosis I had to start doing drive through. First, no problem would request pick up and a handful of bottles would be given to me at a reasonable price. Then came the next stage…”please move to next window,” wherein I would sit there patiently each time longer and longer as the pharmacist would have to argue with insurance about coverage with an ever increasing escalation of price and a decrease number of pills given. This eventually led me to having to park and go into the pharmacy to discuss alternative options. Then came the inevitable forced changed by new Obamacare to get Medicare. Although, I had perfectly good insurance which although expensive it allowed me to get my medications without much hassle other than increasing yearly out of pocket cost. But suddenly because of my diagnosis, I was told to be “fortunate” to qualify for Medicare so my other insurance simply refused to cover expenses because under new law I WAS eligible for this so called wonderful privilege of having Medicare! After two months of trying to get the RIGHT Medicare coverage, I obtained the one government assigned to me NOT one I chose because I had too many illnesses. Was this new law not supposed to give insurance to all people independent of health status?

Well, I got insurance. I guess they forgot to qualify as to what sort of coverage people like me with chronic illnesses in reality will obtain!

Now, no longer can I get the medications I want, when I need but is a monthly battle of wits between me, the pharmacist and the insurance company taking a couple of hours at times just to get my meds and sometimes even after this length of time even with letters from the insurance company stating I have approval of medications in hand the insurance company refuses to honor this contract leaving me with two choices due without medicine or pay upwards of $300 per prescription.  All the while, as I sit there I see person after person of all ages and walks of life get the same comment…” Sorry, your insurance did not approve this prescription” or “you must get authorization from your physician first,” as if physicians sole job was to spend all day filling out the hundreds of Forms requested on a daily basis by their patient clientele. No wonder doctors are currently experiencing more burn out and frustration and disappointment in their career choices than ever before. They have no time to treat patients or to practice their calling because filling out mundane useless paperwork. web_banner_2_300x250

Each time invariably they will say how desperately they need their medication for management of current illness requesting retail price without insurance and the great majority have a sinking saddened look as they walk away without their much needed prescriptions. This is because in the last several years’ retail prescription prices have increased six times faster than 1.5 % inflation. This is according to the new AARP Public Policy Institute (PPI) report. Even the prices of so called generic drugs has escalated to the point of in some cases being more expensive than brand name drugs. The average annual prescription cost has reached new heights of over $11,000 which according to the experts is nearly 75% of the average annual Social Security benefits.

If these trends continue people are simply going to stop medications which are no longer affordable increasing the taxpayers burden of having to not only pay for the extra cost of medications; but also for an increase number of institutionalized people with chronic disabilities like Parkinson’s disease and other neurologically progressive illnesses such as stokes, and Alzheimer’s which will invariably result as their disease progresses due to absence of adequate treatment. As it is now, my opinion and that of many of my colleagues is that many Parkinson’s patients are not well controlled and suffer unnecessary side effects and disabilities due to the contra into in treatment options dictated by each individual insurance plus the increased limited availability of samples or assisted drug programs for patients to qualify under.  For instance although there are no generic alternatives to Azilect many insurances insist of altering doctors recommendations of use of this medication for an older drug Edepryl which has a generic form known as Selegeline HCl. Although both are in same class, they are altogether different in composition. Azilect is much better tolerated and effective MAO-B inhibitor while the former acts as an inhibitor to both A & B.  Another  example for which I believe so many patients suffer from dyskinesias is the persistent use of older traditional levodopa/carbidopa compounds in lieu of newer intermediate release formulations which are shorter acting and have more side effects than newer compounds in my experience. pdftulip

These newer formulations like Rytary are upwards of $ 500 a month no one can take this at these rates especially if they have to take another 10 medications half of which are almost s expensive so they opt for cheaper drugs with higher side effects decreasing their quality of life in the long run. And since we can’t even rely on cheaper generic drugs to offset  the cost of brand name medications and specialty drugs we are threading very dangerous waters leading to serious implications not just for us with chronic diseases like PD but for the entire health care system which will inevitably implode on itself at this rate unless we do something.  As I said many times, we must lobby for our rights to have access to the medications that our physicians feel are necessary for us to have a true quality of life  and not what our insurances or government think is best for us! Lest we become a nation over run with vexation and cost in attempting to care for an increasingly growing elderly population with increased  neurological diseases like PD. Take action and start demanding change today by writing to your state and national congressmen and letting PAN  (Parkinson’s a ion Network) / MJFOX  what the real concern is for it makes no difference if we have a hundred new PD compounds no one can afford except the extremely wealthy.

So, I take my daily Rytary samples with a great deal of gratitude and introspection since it is affording me to feel like myself again after 10 years of battling with this disease. but as I do I am wondering how long I will have to continue feeling like ‘me’ because when samples dry up no longer will I be able to afford to take this expensive drug. I will continue to pray for change in the system for all who have the right to access to medications that allow them to be themselves once more. In the meantime, I will also continue to make use of my time, efforts and  productivity to advance Parkinson’s awareness, fight for better treatments along with a cure with equal affordable access of these treatments for all who currently live with PD.

Together we can #EndParkinsons